1. Difficulty with Reciprocal Social Interactions
Those with Asperger's syndrome display varying difficulties when interacting with others. Some children and adolescents have no desire to interact, while others simply do not know how. More specifically, they do not comprehend the give-and-take nature of social interactions. They may want to lecture you about the Titanic or they may leave the room in the midst of playing with another child. They do not comprehend the verbal and nonverbal cues used to further our understanding in typical social interactions. These include eye contact, facial expressions, body language, conversational turn-taking, perspective taking, and matching conversational and nonverbal responses to the interaction.
2. Impairments in Language Skills
Those with Asperger's syndrome have very specific problems with language, especially with pragmatic use of language, which is the social aspect. That is, they see language as a way to share facts and information (especially about special interests), not as a way to share thoughts, feelings, and emotions. The child will display difficulty in many areas of a conversation processing verbal information, initiation, maintenance, ending, topic appropriateness, sustaining attention, and turn taking. The child's prosody (pitch, stress, rhythm, or melody of speech) can also be impaired. Conversations may often appear scripted or ritualistic. That is, it may be dialogue from a TV show or a movie. They may also have difficulty problem solving, analyzing or synthesizing information, and understanding language beyond the literal level.
3. Narrow Range of Interests and Insistence on Set Routines
Due to the an Asperger child's anxiety, his interactions will be ruled by rigidity, obsessions, and perseverations (repetitious behaviors or language) transitions and changes can cause. Generally, he will have few interests, but those interests will often dominate. The need for structure and routine will be most important. He may develop his own rules to live by that barely coincide with the rest of society.
4. Motor Clumsiness
Many individuals with Asperger's syndrome have difficulty with both gross and fine motor skills. The difficulty is often not just the task itself, but the motor planning involved in completing the task. Typical difficulties include handwriting, riding a bike, and ball skills.
5. Cognitive Issues
Mindblindness, or the inability to make inferences about what another person is thinking, is a core disability for those with Asperger's syndrome. Because of this, they have difficulty empathizing with others, and will often say what they think without considering another's feelings. The child will often assume that everyone is thinking the same thing he is. For him, the world exists not in shades of gray, but only in black and white. This rigidity in thought (lack of cognitive flexibility) interferes with problem solving, mental planning, impulse control, flexibility in thoughts and actions, and the ability to stay focused on a task until completion. The rigidity also makes it difficult for an Asperger child to engage in imaginative play. His interest in play materials, themes, and choices will be narrow, and he will attempt to control the play situation.
6. Sensory Sensitivities
Many Asperger children have sensory issues. These can occur in one or all of the senses (sight, sound, smell, touch, or taste). The degree of difficulty varies from one individual to another. Most frequently, the child will perceive ordinary sensations as quite intense or may even be underreactive to a sensation. Often, the challenge in this area will be to determine if the child's response to a sensation is actually a sensory reaction or if it is a learned behavior, driven mainly by rigidity and anxiety.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
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Changes in Adolescence
Aspergers syndrome children eventually go through the adolescence on their way toward becoming strong, focused adults.
While adolescence is difficult for all teens, it can easily be much worse for those suffering from Aspergers syndrome.
With the right education and support, many Aspergers children go on to graduate from high school.
Because they tend to be loners and have odd mannerisms, they can be shunned from popular groups of kids and can be the focus of teasing.
Even so, these children and teens develop feelings for others they become attracted to, even though they can’t always express their feelings correctly.
This can lead to frustration and anger in the teen with Aspergers who develops his or her first tentative relationships.
They are more likely to face rejection from their peers and be left with a low self esteem as a result.
Often, a child with Aspergers syndrome fares best with one or two close friends with whom they can practice adolescent social skills and growing up behaviors.
Even one relatively close relationship can make the difference between a depressed, awkward teen and one who is beginning to learn valuable social skills with a select few others.
Parents and family may need to help facilitate relationships between their Aspergers syndrome child and other teens their own age.
Offering to have other children overnight or taking their child to an activity with one or two other acquaintances can help facilitate closer connections between their child and others their own age.
Having a teen love experience is often much more difficult for Aspergers syndrome teens.
Their tendency to want to be alone comes into conflict with their desire to be close to another person.
Psychotherapy and family support can go a long way toward helping a teen with Aspergers syndrome get through the difficult adolescent time.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
While adolescence is difficult for all teens, it can easily be much worse for those suffering from Aspergers syndrome.
With the right education and support, many Aspergers children go on to graduate from high school.
Because they tend to be loners and have odd mannerisms, they can be shunned from popular groups of kids and can be the focus of teasing.
Even so, these children and teens develop feelings for others they become attracted to, even though they can’t always express their feelings correctly.
This can lead to frustration and anger in the teen with Aspergers who develops his or her first tentative relationships.
They are more likely to face rejection from their peers and be left with a low self esteem as a result.
Often, a child with Aspergers syndrome fares best with one or two close friends with whom they can practice adolescent social skills and growing up behaviors.
Even one relatively close relationship can make the difference between a depressed, awkward teen and one who is beginning to learn valuable social skills with a select few others.
Parents and family may need to help facilitate relationships between their Aspergers syndrome child and other teens their own age.
Offering to have other children overnight or taking their child to an activity with one or two other acquaintances can help facilitate closer connections between their child and others their own age.
Having a teen love experience is often much more difficult for Aspergers syndrome teens.
Their tendency to want to be alone comes into conflict with their desire to be close to another person.
Psychotherapy and family support can go a long way toward helping a teen with Aspergers syndrome get through the difficult adolescent time.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Adult Diagnosis
As more and more doctors and society in general understands more about Aspergers syndrome, the condition is being diagnosed in adults as well as children.
Sometimes the diagnosis doesn’t come out in adults until their own child is diagnosed with an Autism Spectrum Disorder.
Typical symptoms associated with Aspergers syndrome in adults include having an average or above average intelligence, having difficulty thinking abstractly, showing difficulty empathizing with others, having poor conversational ability, and having difficulty controlling their feelings.
They also tend to adhere strongly to routines and schedules, show some inappropriate social behaviors and tend to specialize in specific fields or hobbies.
Adults with Aspergers syndrome often cannot clearly understand the emotions of others.
They may miss the subtleties of facial expression, eye contact and body language.
Like children with Aspergers syndrome, these adults are often seen as odd.
In addition, more males than females are affected with adult Aspergers syndrome.
In years past, such people muddled along in society, sometimes on the fringes and others were diagnosed with different types of mental illnesses.
Now that Aspergers syndrome has been brought into the public light by cases of people who either have succeeded despite Aspergers syndrome or committed crimes as a result of having previously undiagnosed Aspergers syndrome, more adults are being picked up and treated for the condition.
Often these aren’t adults specifically asking for help for suspected Aspergers syndrome but rather have depression, issues around self esteem or other mood issues that bring them to doctors or therapists that are now making the correct underlying diagnosis.
By finding the correct underlying diagnosis, more help can become available even to those who’ve likely had the diagnosis their entire lives but were unnoticed or labeled something else.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Sometimes the diagnosis doesn’t come out in adults until their own child is diagnosed with an Autism Spectrum Disorder.
Typical symptoms associated with Aspergers syndrome in adults include having an average or above average intelligence, having difficulty thinking abstractly, showing difficulty empathizing with others, having poor conversational ability, and having difficulty controlling their feelings.
They also tend to adhere strongly to routines and schedules, show some inappropriate social behaviors and tend to specialize in specific fields or hobbies.
Adults with Aspergers syndrome often cannot clearly understand the emotions of others.
They may miss the subtleties of facial expression, eye contact and body language.
Like children with Aspergers syndrome, these adults are often seen as odd.
In addition, more males than females are affected with adult Aspergers syndrome.
In years past, such people muddled along in society, sometimes on the fringes and others were diagnosed with different types of mental illnesses.
Now that Aspergers syndrome has been brought into the public light by cases of people who either have succeeded despite Aspergers syndrome or committed crimes as a result of having previously undiagnosed Aspergers syndrome, more adults are being picked up and treated for the condition.
Often these aren’t adults specifically asking for help for suspected Aspergers syndrome but rather have depression, issues around self esteem or other mood issues that bring them to doctors or therapists that are now making the correct underlying diagnosis.
By finding the correct underlying diagnosis, more help can become available even to those who’ve likely had the diagnosis their entire lives but were unnoticed or labeled something else.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
How can people with Aspergers cope with anger and depression?
Ideally, the focus should be on prevention and on helping younger children with Aspergers syndrome develop communication skills and develop a healthy self esteem. These things can create the ability to develop relationships and friendships, lessening the chances of having issues with anger or depression.
Anger can also come in Aspergers syndrome sufferers when rituals can’t get accomplished or when their need for order or symmetry can’t be met. Frustration over what doesn’t usually bother others can lead to anger and sometimes, violent outbursts. This kind of anger is best handled through cognitive-behavioral therapy that focuses on maintaining control in spite of the frustration of not having their needs met.
While it is better to teach communication skills and self esteem to the younger children, communication skills and friendship skills can be taught to teens or even adults that can eliminate some of the social isolation they feel. This can avert or reverse depression and anger symptoms.
The truth is that some Aspergers syndrome patients become so depressed that they commit suicide. Other Aspergers syndrome patients become angry enough that they get violent and hurt or kill others as a result. The challenge becomes recognizing these individuals before they do harm and getting them into therapy or starting medications for depressions or for obsessive compulsive symptoms so that tragedy can be avoided.
To discover Natural Approaches to dealing with anger and depression please go to: www.NativeRemedies.com
The Aspergers Comprehensive Handbook
Dealing with anger management (older kids).
Children with Aspergers syndrome easily can have as much of a problem controlling their anger as other children. Because children and teens with Aspergers syndrome have difficulty understanding emotions and their impact on others, however, they often have more difficulty than other children reigning in their anger.
In addition, teens with Aspergers syndrome aren’t living in a void in which they don’t understand that they’re different from other kids. Often teased by their peers, they can have incipient anger they don’t understand and can’t easily control.
Helping older children and teens with Aspergers syndrome who also have anger issues requires direct communication about the affect of their anger on others as well as methods of improving the self esteem and sense of self worth often at the root of the child’s anger.
Anger that’s acted out badly needs to be treated like any other unwanted behavior. Some form of reasonable punishment directed at getting the point across that the behavior is wrong needs to be combined with a pragmatic discussion of the meaning behind the anger and other ways to control the anger. Remember that what punishes the Aspergers child can be much different from what punishes other children.
If the anger seems to be a part of the child’s frustration over how he or she is treated by others or from depressive feelings, finding better avenues to discuss what is really going on with the child can help them deal with the issues without using anger as an outlet. Most Aspergers children are of greater than average intelligence and have the resources to understand the relationship between their anger and the underlying social issues their dealing with.
In situations where the anger seems to be an overwhelming issue, families should not hesitate to speak with a family or other psychotherapist for help.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
In addition, teens with Aspergers syndrome aren’t living in a void in which they don’t understand that they’re different from other kids. Often teased by their peers, they can have incipient anger they don’t understand and can’t easily control.
Helping older children and teens with Aspergers syndrome who also have anger issues requires direct communication about the affect of their anger on others as well as methods of improving the self esteem and sense of self worth often at the root of the child’s anger.
Anger that’s acted out badly needs to be treated like any other unwanted behavior. Some form of reasonable punishment directed at getting the point across that the behavior is wrong needs to be combined with a pragmatic discussion of the meaning behind the anger and other ways to control the anger. Remember that what punishes the Aspergers child can be much different from what punishes other children.
If the anger seems to be a part of the child’s frustration over how he or she is treated by others or from depressive feelings, finding better avenues to discuss what is really going on with the child can help them deal with the issues without using anger as an outlet. Most Aspergers children are of greater than average intelligence and have the resources to understand the relationship between their anger and the underlying social issues their dealing with.
In situations where the anger seems to be an overwhelming issue, families should not hesitate to speak with a family or other psychotherapist for help.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Aspergers and Comorbid Conditions
Children with Aspergers syndrome are known to have several comorbid conditions. Comorbid conditions are those conditions or diseases that go along with having Aspergers syndrome. One of these conditions is known as ADHD or attention deficit hyperactivity disorder. Sometimes, these children can be misdiagnosed as only having the more common ADHD, with the Aspergers syndrome being missed.
Obsessive compulsive disorder can be a comorbidity with Aspergers syndrome. In some cases, this doesn’t show up until the Aspergers syndrome individual is an adult. What both conditions have in common is the need for order, and the presence of compulsive, sometimes irrational, repetitive behaviors. Some scientists believe that there is a neurological relationship between the two conditions.
Because those with Aspergers syndrome know they are different and have difficulty relating to others, they often suffer from acute or chronic depression. Others can have anger or violent symptoms out of frustration for being “out of place”. There have been reports of suicide and suicide attempts among those with Aspergers syndrome. The symptoms of depression can respond to antidepressant therapy and also to psychological therapy, aimed at helping the Aspergers syndrome patient feel more accepted and acceptable to others.
Seizures are a common comorbidity of Aspergers syndrome with some researchers believing that up to 30 percent of Aspergers syndrome children also have a seizure disorder. Medication can work in some cases, while other sufferers require specialized brain surgery to be free of seizures. While the Aspergers syndrome itself has no known cure or medications specifically designed for it, many of the comorbidities can be treated effectively. Not only can seizures and depression be treated, but the ADHD and obsessive compulsive symptoms have known medical therapies directed at helping them. Using these medications can often make the Aspergers syndrome symptoms more tolerable and increases the functioning of the individual who is experiencing it.
To discover Natural Approaches to dealing with comorbid conditions please go to: www.NativeRemedies.com
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Obsessive compulsive disorder can be a comorbidity with Aspergers syndrome. In some cases, this doesn’t show up until the Aspergers syndrome individual is an adult. What both conditions have in common is the need for order, and the presence of compulsive, sometimes irrational, repetitive behaviors. Some scientists believe that there is a neurological relationship between the two conditions.
Because those with Aspergers syndrome know they are different and have difficulty relating to others, they often suffer from acute or chronic depression. Others can have anger or violent symptoms out of frustration for being “out of place”. There have been reports of suicide and suicide attempts among those with Aspergers syndrome. The symptoms of depression can respond to antidepressant therapy and also to psychological therapy, aimed at helping the Aspergers syndrome patient feel more accepted and acceptable to others.
Seizures are a common comorbidity of Aspergers syndrome with some researchers believing that up to 30 percent of Aspergers syndrome children also have a seizure disorder. Medication can work in some cases, while other sufferers require specialized brain surgery to be free of seizures. While the Aspergers syndrome itself has no known cure or medications specifically designed for it, many of the comorbidities can be treated effectively. Not only can seizures and depression be treated, but the ADHD and obsessive compulsive symptoms have known medical therapies directed at helping them. Using these medications can often make the Aspergers syndrome symptoms more tolerable and increases the functioning of the individual who is experiencing it.
To discover Natural Approaches to dealing with comorbid conditions please go to: www.NativeRemedies.com
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Aspergers and Medication
A medication called atomoxetine has been found to improve some of the aspects of Aspergers syndrome that mimic those of attention deficit disorder. Several studies have used the drug to reduce symptoms of irritability, social withdrawal and repetitive speech seen in this disorder.
Medications normally directed toward treating obsessive compulsive disorder have been tried in children with Aspergers syndrome who have shown obsessive and compulsive tendencies. While the medication doesn’t treat some of the core symptoms of Aspergers syndrome, it has been shown to improve OCD symptoms.
Antidepressants can be attempted in those Aspergers patients who suffer from secondary depression. The depression isn’t generally a part of the Aspergers syndrome itself but is found as a result of some of the distressing life circumstances often found in Aspergers syndrome. Many of these patients know that they do not fit in with others and while some prefer social isolation, others lament their lack of ability to get comfortable dealing with others. This and other issues of self esteem, etc., can lead to depression which is often manageable with antidepressant medication.
Finally, Aspergers syndrome patients often suffer from debilitating insomnia. While it’s best to use non-drug ways of controlling the symptoms, some Aspergers disease patients can make use of sleeping medication that doesn’t have to be addicting. Sometimes a short course of sleeping medication can get a patient back into a regular sleeping pattern.
Medications directed at anxiety may be necessary when the Aspergers patient suffers from nervousness or irritability surrounding their life situations. Aspergers patients can become quite distressed by things not being the same or as expected, and anti-anxiety medication can help with this.
In truth, there is no single medication or class of medications that works to treat many of the core symptoms of Aspergers syndrome. Some of the secondary or related symptoms can be effectively managed, however, with certain psychotropic medications.
The Aspergers Comprehensive Handbook
Best Comment:
Medication will help in very specific ways. Medication helps in reducing panic attacks, anxiety and aggression and explosive behavior. AS kids have restricted interests by definition of the disorder. They focus in on details on whatever it is they are talking about. Even with medication. But it helps to have the medication reduce some the stress. A good book to refer to for doses for AS kids is "Clinical Treatment of Autism" by Dr. Eric Hollander (From Mt. Sinai Autism Center) For example, AS kids start at low doses of Zoloft (25mg up to 50mg) or Prozac (10mg up to 20mg).
What else is needed is a different approach. Many activities need to be rehearsed in very small steps over years of exposures. And with a positive reinforcement plan. I have found Yale University Parent and Child Conduct Clinic very helpful. I have been trained by them on the phone over the last two years.
Here are some strategies:
1) Avoid stores with him until you can work on a behavior plan with him on this. When you have time, he needs to be taught to shop from a list, stick to a budget, ignore items he sees that are not on the list and that shopping is a reward to be earned by doing both. Tagging along with parents shopping is going to be irritating to him for a long time in the future.
2) Only pair him up with kids that are younger or not challenging personalities. Make the social activity predictable (movie, with defined snacks), or (park and a drink and chips we bring with) or (bowling 2 games and a snack and drink). Rehearse the social activity. And praise all positive behavior. Often as they get older, they will start to be able to be more flexible with peers.
3) Practice talking at meals about pleasant things that others are interested in. Don't allow dinners to be all special interests all the time. Practice at some meals taking an interest in the parent’s interests or other members of the family. This is a skill that takes time to develop. If he was shut out of conversation all day at school, then dinner may be his time to talk about his interests. It may have to wait until a less stressful time of the year to practice this skill.
3) Church is going to be difficult. All those people and the noise from all directions. It is an irritating place for many AS kids. My daughter goes to Sunday school (and I have taught the class for 8 years) not church services (except for Christmas and Easter when there is lots of music and we attend the children's mass).
I think parent's need support from a behaviorist. Parents of typical kids and teachers will not understand that these kids need very small steps and exposures to life in general.
Teachers and school staff will push too hard, it is only a certified behaviorist of autistic kids that understand behavior shaping is a slow process of gradual change with positive supports.
A better day for your son would be:
1) Lunch at his favorite place with you only. Agree on your limits ahead of time. The less limits the less irritated he will be. So pick an affordable place with food choices that you approve of.
Practice menu choices. Without a fight. Practice budget. When he can go to the lunch place without a meltdown over menu choices he is ready for your boyfriend to be there and then his son.
The goal of this exercise is to have a positive social experience. Don't expect to go to a busy noisy rushed
place at lunch on Saturday with a group of people and expect him to be well behaved. It all has to be rehearsed and practiced.
2) Find him a church setting where there is very small Sunday school groups for kids his age. Let the teacher know he needs support and understanding.
3)Melatonin tablets are very helpful for relaxing AS kids at bedtime. This really works. The Mayo Clinic recommends them an hour before bedtime. I forgot the dose I use for my daughter, look at the Mayo Clinic web site on Asperger kids and medications. It has made a huge difference for my daughter. She use to get very anxious and had a busy mind at bedtime. Now she is asleep within an hour.
4) Follow this plan: One outing a day, one place, and allow 1 hour or more. Don't rush him to leave. Give him a warning. Offer a small reward if he leaves calmly when it is time.
There is so much to share about parenting an AS child. This is a rushed summary, and I am rushing through the details. But it is meant to give you an idea of the strategies that work. You will find a behaviorist very helpful. Yale was affordable for me. $75 for 45 min and I did get some money from insurance back.
Aspergers and Stress
Being a member of a family in which one or more members have Aspergers syndrome can be extremely stressful at times. Sometimes it seems as if the entire family focus is on the Aspergers child and on the various tantrums and behaviors that come with it. Family members, and especially parents, can feel a low level of anxiety in anticipation of what could happen next.
It’s vital to take steps as a parent or family member to take time for yourself away from the situation when things feel overwhelming. Take turns with the other parent so you each have peaceful times away from the situation. If possible, spend one on one time with other children in the home. This will reduce their stress level as well.
Get plenty of sleep. If your Aspergers syndrome child has difficulty sleeping, speak with his or her doctor to find ways to help your child sleep better so you can get your sleep, too. Don’t be afraid to take naps so you have enough rest to cope with whatever comes.
Don’t skip meals and eat as healthy as you can. If your child is on a special diet, make sure that the rest of the family and you get the type of nourishment that suits you best and revives your energy levels.
Consider exercising with or without your child. Take walks or bicycle rides to calm your nerves and increase your body’s endorphin levels. Stress levels automatically decrease with exercising just a few times per week.
Some herbal supplements like kava kava, valerian root and St. John’s Wort have relaxation and calming properties. In serious situations, these herbs can come in handy when you just can seem to stem the anxiety on your own. For questions about herbal supplements, speak to your doctor. There is a great website that sells these product at 20-70% discount called EVitamins which you can visit to search for more information on them.
If the family appears to be in crisis over the stress and anxiety of some of its members, family therapy can be very helpful. Individual therapy is also an option for those family members needing extra help. Often the therapist can coach you in the coping skills necessary to stay healthy and to raise your Aspergers syndrome child as best as is possible.
My Aspergers Child: Preventing Meltdowns
It’s vital to take steps as a parent or family member to take time for yourself away from the situation when things feel overwhelming. Take turns with the other parent so you each have peaceful times away from the situation. If possible, spend one on one time with other children in the home. This will reduce their stress level as well.
Get plenty of sleep. If your Aspergers syndrome child has difficulty sleeping, speak with his or her doctor to find ways to help your child sleep better so you can get your sleep, too. Don’t be afraid to take naps so you have enough rest to cope with whatever comes.
Don’t skip meals and eat as healthy as you can. If your child is on a special diet, make sure that the rest of the family and you get the type of nourishment that suits you best and revives your energy levels.
Consider exercising with or without your child. Take walks or bicycle rides to calm your nerves and increase your body’s endorphin levels. Stress levels automatically decrease with exercising just a few times per week.
Some herbal supplements like kava kava, valerian root and St. John’s Wort have relaxation and calming properties. In serious situations, these herbs can come in handy when you just can seem to stem the anxiety on your own. For questions about herbal supplements, speak to your doctor. There is a great website that sells these product at 20-70% discount called EVitamins which you can visit to search for more information on them.
If the family appears to be in crisis over the stress and anxiety of some of its members, family therapy can be very helpful. Individual therapy is also an option for those family members needing extra help. Often the therapist can coach you in the coping skills necessary to stay healthy and to raise your Aspergers syndrome child as best as is possible.
My Aspergers Child: Preventing Meltdowns
Books to share with your AS child.
Children with ASD struggle when trying to learn social skills, and the lack of social skills may have a bigger impact on their life than any other aspect. Peers can bully them for their differences and it is important that these children learn these skills as early as possible to minimize the effects of bullying and rejection from peers. Knowing these skills will help them be stronger people and make them less vulnerable to the actions of others.
Children learn from stories that share the same experiences that they may be having. Reading to your ASD child also provides the opportunity to provide the repetition that they need to absorb learning of new skills. It also provides the opportunity to role play skills that they don't seem to comprehend simply from the story. Further, the reading of these stories lets ASD children that they are not alone in the challenges that they face.
Diane Murrell, the author of two stories is the parent of children with ASD and has a first-hand understanding of the challenges they face. Tobin Learns to Make Friends teaches some of the skills necessary to make friends.
Children with ASD want to make and keep friends but often lack the skills to do so. Murrel highlights some of the skills necessary using incidents of shouting, crowding, sharing, borrowing, interrupting, taking turns, being kind, having good manners, and following rules.
Also by the same author Oliver Onion - The Onion Who Learns to Accept and Be Himself builds on the friendship building skills that were learned in "Tobin Learns to Make Friends," This book is aimed at children aged 4-10 and helps children with ASD accept who they are.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Children learn from stories that share the same experiences that they may be having. Reading to your ASD child also provides the opportunity to provide the repetition that they need to absorb learning of new skills. It also provides the opportunity to role play skills that they don't seem to comprehend simply from the story. Further, the reading of these stories lets ASD children that they are not alone in the challenges that they face.
Diane Murrell, the author of two stories is the parent of children with ASD and has a first-hand understanding of the challenges they face. Tobin Learns to Make Friends teaches some of the skills necessary to make friends.
Children with ASD want to make and keep friends but often lack the skills to do so. Murrel highlights some of the skills necessary using incidents of shouting, crowding, sharing, borrowing, interrupting, taking turns, being kind, having good manners, and following rules.
Also by the same author Oliver Onion - The Onion Who Learns to Accept and Be Himself builds on the friendship building skills that were learned in "Tobin Learns to Make Friends," This book is aimed at children aged 4-10 and helps children with ASD accept who they are.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Suitable Careers/Jobs for Adults with Aspergers
Other careers include working in the music industry. Aspergers syndrome individuals often develop striking musical abilities and can then work in this field as a later career. Careers involving mathematics or science are also common in Aspergers syndrome. This can include becoming an accountant, working in economics, working in scientific research, working as a university professor or other mathematical or scientific area. Often, the interest in math and science are natural gifts for these children and the transition from avocation to vocation is usually a seamless one.
Careers in writing are not uncommon for Aspergers syndrome individuals. Writing is a solitary task and often, the Aspergers individual can learn to use words on a page to create books, articles and other material that overcomes their natural need to think in pictures.
Think about the future career of an individual with Aspergers syndrome needs to be proactive and often the process of exploring careers needs to be done sooner than with other individuals. Talking with guidance and career counselors is a good idea in order to explore possible options. Tours of different careers or shadowing a scientist or mathematician may help the teen get an idea of which type of career would be the best for them.
Do plenty of reading about careers and jobs for those with Aspergers syndrome. Two books, Aspergers Syndrome Employment Workbook: An Employment Workbook for Adults with Aspergers Syndrome (Paperback) and Employment for Individuals with Aspergers Syndrome or Non-Verbal Learning Disability by Yvona Fast are available in some bookstores or at www.amazon.com. There are plenty of ideas as to how to begin searching for an appropriate career.
There’s nothing to limit an Aspergers person to just these areas and many Aspergers individuals have found success in other areas of employment. Pay attention to the child’s strengths and weaknesses, as well as the interests they exhibit.
The Aspergers Comprehensive Handbook
How to deal with bullying.
Children with Aspergers syndrome often exhibit behaviors that are peculiar enough to hold the attention of children who do not have the best interests of the child in mind. Besides simple teasing, bullying of the Aspergers child can happen in situations in which the Aspergers child has little ability to protect him or herself.
Fortunately, if such bullying happens in school, it can be managed more easily, provided your child divulges that it is going on. Most schools are cracking down on bullying and are treating such behavior as assault and punishable by legal means. Parents have every right to speak with the principal, teacher or counselor in order to ask their help in controlling the bullies. Some schools have behavioral support staff whose job it is to get to the bottom of behavior issues and crack down on bullies.
Teach your child to walk away from bullies, preferably before they get started. Help the child learn to recognize those situations that may lead to bullying, such as after school, on the playground or in lunch and teach the child to be more vigilant and stay near adults in such circumstances.
Sometimes, just having another friend around may reduce the incidence of bullying. If your child has problems making friends on his or her own, facilitate friendships with mature, understanding children who can both be a friend to your child and can help out if bullies try to tease or hurt the Aspergers child. Facilitating friendships may mean inviting a child over for a meal or for some games or television. It may mean taking the two children to a movie or on a shopping trip.
Bullies are a fact of life for some children with Aspergers syndrome. The more a parent can do to intervene with the help of other adults or children and teach the Aspergers child mechanisms for self preservation that don’t include fighting back, the better able the Aspergers child can be in dealing with this difficult situation.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Fortunately, if such bullying happens in school, it can be managed more easily, provided your child divulges that it is going on. Most schools are cracking down on bullying and are treating such behavior as assault and punishable by legal means. Parents have every right to speak with the principal, teacher or counselor in order to ask their help in controlling the bullies. Some schools have behavioral support staff whose job it is to get to the bottom of behavior issues and crack down on bullies.
Teach your child to walk away from bullies, preferably before they get started. Help the child learn to recognize those situations that may lead to bullying, such as after school, on the playground or in lunch and teach the child to be more vigilant and stay near adults in such circumstances.
Sometimes, just having another friend around may reduce the incidence of bullying. If your child has problems making friends on his or her own, facilitate friendships with mature, understanding children who can both be a friend to your child and can help out if bullies try to tease or hurt the Aspergers child. Facilitating friendships may mean inviting a child over for a meal or for some games or television. It may mean taking the two children to a movie or on a shopping trip.
Bullies are a fact of life for some children with Aspergers syndrome. The more a parent can do to intervene with the help of other adults or children and teach the Aspergers child mechanisms for self preservation that don’t include fighting back, the better able the Aspergers child can be in dealing with this difficult situation.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Can Aspergers be inherited?
Aspergers syndrome is a neurobiological disorder in which known areas of the brain are affected in ways scientists do not yet understand. Aspergers syndrome is considered to be inherited in a complex fashion—more complicated than disorders like color-blindness or Huntington’s disease. The recurrence rate for the disease in brothers and sisters of affected children is approximately 2% to 8%, much higher than the rate in the general population but much lower than in single-gene diseases.
Other autism spectrum disorders are closer to finding a genetic basis behind them. Rett’s syndrome is an autistic disorder for which the exact genetic cause is believed to have been found. In Aspergers syndrome, studies suggest problems in several chromosomal (genetic) regions, including areas on the chromosomes 2q, 7q and 15q. While the 7q region is considered the most promising area of study, research studies involving this chromosome in Aspergers syndrome have failed to observe its linkage to this region.
For reasons doctors do not know, there are far more boys diagnosed than girls. Scientists have evaluated whether or not Aspergers syndrome represents an X-linked genetic disorder—one passed down generally from a mother to a son. Unfortunately, there have been cases of father to son transmission of the condition, which means that the disease cannot be X-linked.
In at least one case, two parents with Aspergers syndrome had a child that also had Aspergers syndrome but did not have a severe case of the disorder, nor did the child have autism. In another case, identical twins both had Aspergers syndrome but this is not always the case.
While some scientists support the idea that at least a portion of Aspergers syndrome isn’t genetic at all, there have been no specific findings associating the syndrome with any environmental condition, including a lack of association of the disease with pregnancy characteristics and pregnancy complications.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Other autism spectrum disorders are closer to finding a genetic basis behind them. Rett’s syndrome is an autistic disorder for which the exact genetic cause is believed to have been found. In Aspergers syndrome, studies suggest problems in several chromosomal (genetic) regions, including areas on the chromosomes 2q, 7q and 15q. While the 7q region is considered the most promising area of study, research studies involving this chromosome in Aspergers syndrome have failed to observe its linkage to this region.
For reasons doctors do not know, there are far more boys diagnosed than girls. Scientists have evaluated whether or not Aspergers syndrome represents an X-linked genetic disorder—one passed down generally from a mother to a son. Unfortunately, there have been cases of father to son transmission of the condition, which means that the disease cannot be X-linked.
In at least one case, two parents with Aspergers syndrome had a child that also had Aspergers syndrome but did not have a severe case of the disorder, nor did the child have autism. In another case, identical twins both had Aspergers syndrome but this is not always the case.
While some scientists support the idea that at least a portion of Aspergers syndrome isn’t genetic at all, there have been no specific findings associating the syndrome with any environmental condition, including a lack of association of the disease with pregnancy characteristics and pregnancy complications.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Aspergers and Comorbid Conditions
Aspergers syndrome is a neurologic brain disorder of unknown origin. Its sufferers often experience oddities of behavior, poor communication skills, difficulties with sensations and a relative lack of social skills. This makes them generally more isolated than other children and they often grow up with few friends and very narrowed foci of interest.
Researchers have found that certain psychiatric disorders are more common in those who have Aspergers syndrome. One of these is obsessive-compulsive disorder or OCD. In fact, some researchers feel that Aspergers syndrome is a subset of OCD. This is especially true when the Aspergers child grows to adulthood. They may have problems with intrusive, obsessive thoughts and might perform certain ritualistic behaviors to control these obsessive thoughts. In some cases, the disorder can be very debilitating.
Medications for OCD have been used in those with OCD and Aspergers syndrome with some success. The medications stop some of the intrusive thinking and reduce the numbers and severity of compulsive behaviors while the core features of Aspergers syndrome do not change much.
Because those with Aspergers syndrome suffer from social deprivation and feelings of inadequacy, they seem to have a higher incidence of depression as well. The depression becomes a secondary complication of having Aspergers syndrome and comes as a result of unmet needs and lack of meaningful communication—things that most people have little difficulty in getting for themselves. Antidepressant medication may be helpful in this type of depression as can psychotherapy directed at the unique problems of the Aspergers patient.
There has been much written about concerning the comorbidity of Aspergers syndrome patients and criminal activity. Depending on whether or not and when the Aspergers syndrome was recognized and treated, the Aspergers individual may have learned some behaviors that predispose them to violent behavior as adults. While the incidence is not high, the issue comes up in research around whether or not an Aspergers syndrome patient is responsible for their violent action. In some cases, it has been found that the Aspergers patient lacked the insight it would take to know that what they were doing was wrong.
Insomnia is another comorbidity of Aspergers syndrome. This can happen in children or adults and is likely related to the brain disorder itself.
Not every Aspergers patient has a comorbidity but it is a good idea to look for the possibility of other psychiatric syndromes as the Aspergers patient grows and develops.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Researchers have found that certain psychiatric disorders are more common in those who have Aspergers syndrome. One of these is obsessive-compulsive disorder or OCD. In fact, some researchers feel that Aspergers syndrome is a subset of OCD. This is especially true when the Aspergers child grows to adulthood. They may have problems with intrusive, obsessive thoughts and might perform certain ritualistic behaviors to control these obsessive thoughts. In some cases, the disorder can be very debilitating.
Medications for OCD have been used in those with OCD and Aspergers syndrome with some success. The medications stop some of the intrusive thinking and reduce the numbers and severity of compulsive behaviors while the core features of Aspergers syndrome do not change much.
Because those with Aspergers syndrome suffer from social deprivation and feelings of inadequacy, they seem to have a higher incidence of depression as well. The depression becomes a secondary complication of having Aspergers syndrome and comes as a result of unmet needs and lack of meaningful communication—things that most people have little difficulty in getting for themselves. Antidepressant medication may be helpful in this type of depression as can psychotherapy directed at the unique problems of the Aspergers patient.
There has been much written about concerning the comorbidity of Aspergers syndrome patients and criminal activity. Depending on whether or not and when the Aspergers syndrome was recognized and treated, the Aspergers individual may have learned some behaviors that predispose them to violent behavior as adults. While the incidence is not high, the issue comes up in research around whether or not an Aspergers syndrome patient is responsible for their violent action. In some cases, it has been found that the Aspergers patient lacked the insight it would take to know that what they were doing was wrong.
Insomnia is another comorbidity of Aspergers syndrome. This can happen in children or adults and is likely related to the brain disorder itself.
Not every Aspergers patient has a comorbidity but it is a good idea to look for the possibility of other psychiatric syndromes as the Aspergers patient grows and develops.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Dealing with sensory problems.
Parents of children with Aspergers syndrome often recognize early that there are some sensory problems with their child. They may have a hyperactive startled response to various kinds of noises and some of them walk around acting deaf because they have had to tune out the excessive noise around them. Aspergers adults report auditory problems and find themselves unable to carry on conversations in noisy or busy places.
Aspergers children also have difficulty with tactile stimulation. They may startle when touched or feel uncomfortable when held. They may be overwhelmed when dealing with the wearing of new clothing that their body hasn’t become accustomed to. The child may prefer certain textures of clothing, such as soft, loose cotton.
There can be difficulty tolerating certain textures or tastes of food. Parents need to be aware of this when trying new foods or when the child enters a new eating environment, such as school lunches or eating at the homes of others.
Coping with some of these sensory difficulties often means having an understanding of the common problems and trial and error regarding the specific problems your child has. For example, new clothing may need to be washed a few times until they are softer and easier to wear. Some female children cannot tolerate the rubbing of their legs together and so need to wear pants and not dresses.
The proper middle ground between sensory deprivation and a noisy, chaotic environment needs to be found and maintained whenever possible. Exposing the child to dozens of screaming children at daycare may not always be the best option for the child with Aspergers syndrome.
Parents also need to find the most effective way to give affection to their child without creating more anxiety. Cuddling with your child may be less of an option than just verbally showing approval. Parents can show their affection in ways that are less stressful to the child yet still give the same comfortable message.
As your child ages, he or she may have greater insight into what kinds of things they can tolerate and which things they cannot. Until then, parents need patients and creativity in finding the right middle ground that leaves the child as comfortable as possible.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Aspergers children also have difficulty with tactile stimulation. They may startle when touched or feel uncomfortable when held. They may be overwhelmed when dealing with the wearing of new clothing that their body hasn’t become accustomed to. The child may prefer certain textures of clothing, such as soft, loose cotton.
There can be difficulty tolerating certain textures or tastes of food. Parents need to be aware of this when trying new foods or when the child enters a new eating environment, such as school lunches or eating at the homes of others.
Coping with some of these sensory difficulties often means having an understanding of the common problems and trial and error regarding the specific problems your child has. For example, new clothing may need to be washed a few times until they are softer and easier to wear. Some female children cannot tolerate the rubbing of their legs together and so need to wear pants and not dresses.
The proper middle ground between sensory deprivation and a noisy, chaotic environment needs to be found and maintained whenever possible. Exposing the child to dozens of screaming children at daycare may not always be the best option for the child with Aspergers syndrome.
Parents also need to find the most effective way to give affection to their child without creating more anxiety. Cuddling with your child may be less of an option than just verbally showing approval. Parents can show their affection in ways that are less stressful to the child yet still give the same comfortable message.
As your child ages, he or she may have greater insight into what kinds of things they can tolerate and which things they cannot. Until then, parents need patients and creativity in finding the right middle ground that leaves the child as comfortable as possible.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
Autism Spectrum Disorders (Pervasive Developmental Disorders)
Not until the middle of the twentieth century was there a name for a disorder that now appears to affect an estimated 3.4 every 1,000 children ages 3-10, a disorder that causes disruption in families and unfulfilled lives for many children. In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label early infantile autism into the English language. At the same time a German scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger syndrome. Thus these two disorders were described and are today listed in the Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (fourth edition, text revision)1 as two of the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD). All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior.
The autism spectrum disorders can often be reliably detected by the age of 3 years, and in some cases as early as 18 months.2 Studies suggest that many children eventually may be accurately identified by the age of 1 year or even younger. The appearance of any of the warning signs of ASD is reason to have a child evaluated by a professional specializing in these disorders.
Parents are usually the first to notice unusual behaviors in their child. In some cases, the baby seemed "different" from birth, unresponsive to people or focusing intently on one item for long periods of time. The first signs of an ASD can also appear in children who seem to have been developing normally. When an engaging, babbling toddler suddenly becomes silent, withdrawn, self-abusive, or indifferent to social overtures, something is wrong. Research has shown that parents are usually correct about noticing developmental problems, although they may not realize the specific nature or degree of the problem.
The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder.
Rare Autism Spectrum Disorders--
Rett Syndrome
Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl's mental and social development regresses—she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.
Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and improving the quality of life these children experience.*
Childhood Disintegrative Disorder
Very few children who have an autism spectrum disorder (ASD) diagnosis meet the criteria for childhood disintegrative disorder (CDD). An estimate based on four surveys of ASD found fewer than two children per 100,000 with ASD could be classified as having CDD. This suggests that CDD is a very rare form of ASD. It has a strong male preponderance.** Symptoms may appear by age 2, but the average age of onset is between 3 and 4 years. Until this time, the child has age-appropriate skills in communication and social relationships. The long period of normal development before regression helps differentiate CDD from Rett syndrome.
The loss of such skills as vocabulary are more dramatic in CDD than they are in classical autism. The diagnosis requires extensive and pronounced losses involving motor, language, and social skills.*** CDD is also accompanied by loss of bowel and bladder control and oftentimes seizures and a very low IQ.
What Are the Autism Spectrum Disorders?
The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome.2 Prevalence studies have been done in several states and also in the United Kingdom, Europe, and Asia. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old had autism.3 This wide range of prevalence points to a need for earlier and more accurate screening for the symptoms of ASD. The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions. Pediatricians, family physicians, daycare providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will "catch up." Although early intervention has a dramatic impact on reducing symptoms and increasing a child's ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten.
All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look. Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.
Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other children the same age. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and that their children start to reject people, act strangely, and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.
ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Webcast, Autism Among Us.
Possible Indicators of Autism Spectrum Disorders
* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
Some Other Indicators
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired
Social Symptoms
From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.
In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parents' displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to "read." To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.
Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues—whether a smile, a wink, or a grimace—may have little meaning. To a child who misses these cues, "Come here" always means the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other people's actions.
Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of "immature" behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to "lose control," particularly when they're in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms.
Communication Difficulties
By age 3, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is "no."
Some children diagnosed with ASD remain mute throughout their lives. Some infants who later show signs of ASD coo and babble during the first few months of life, but they soon stop. Others may be delayed, developing language as late as age 5 to 9. Some children may learn to use communication systems such as pictures or sign language.
Those who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some ASD children parrot what they hear, a condition called echolalia. Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.
Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The "give and take" of normal conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. Another difficulty is often the inability to understand body language, tone of voice, or "phrases of speech." They might interpret a sarcastic expression such as "Oh, that's just great" as meaning it really IS great.
While it can be hard to understand what ASD children are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what they are saying. Also, their tone of voice fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common. Some children with relatively good language skills speak like little adults, failing to pick up on the "kid-speak" that is common in their peers.
Without meaningful gestures or the language to ask for things, people with ASD are at a loss to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, ASD children do whatever they can to get through to others. As people with ASD grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result they may become anxious or depressed.
Repetitive Behaviors
Although children with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.
As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children need, and demand, absolute consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world of confusion.
Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or science topics.
Problems That May Accompany ASD
Sensory problems. When children's perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the child's experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream.
In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.
Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.
Seizures. One in four children with ASD develops seizures, often starting either in early childhood or adolescence. 5 Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a "blackout"), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram—recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizure's presence.
In most cases, seizures can be controlled by a number of medicines called "anticonvulsants." The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective.
Fragile X syndrome. This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome. 6 Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome.
Tuberous Sclerosis. Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to 4 percent of people with ASD also have tuberous sclerosis.7
The Diagnosis of Autism Spectrum Disorders
Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD.
In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASD may be apparent in the first few months of a child's life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during "well child" check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.
Screening
A "well child" check-up should include a developmental screening test. If your child's pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child's development will be essential in helping to screen your child.8 Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.
Several screening instruments have been developed to quickly gather information about a child's social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT),9 the modified Checklist for Autism in Toddlers (M-CHAT),10 the Screening Tool for Autism in Two-Year-Olds (STAT),11 and the Social Communication Questionnaire (SCQ)12 (for children 4 years of age and older).
Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome.
During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ),13 the Australian Scale for Asperger's Syndrome,14 and the most recent, the Childhood Asperger Syndrome Test (CAST),15 are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.
If, following the screening process or during a routine "well child" check-up, your child's doctor sees any of the possible indicators of ASD, further evaluation is indicated.
Comprehensive Diagnostic Evaluation
The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASD.
Because ASDs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in-depth cognitive and language testing.8 In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)16 and the Autism Diagnostic Observation Schedule (ADOS-G).17 The ADI-R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors—the child's communication, social interaction, repetitive behaviors, and age-of-onset symptoms. The ADOS-G is an observational measure used to "press" for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.
Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS).18 It aids in evaluating the child's body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child's behavior is rated on a scale based on deviation from the typical behavior of children of the same age.
Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.8
Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the child, assessing the child's unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the parents to explain the results of the evaluation.
Although parents may have been aware that something was not "quite right" with their child, when the diagnosis is given, it is a devastating blow. At such a time, it is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to ask questions and get recommendations on what further steps they should take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.
Available Aids
When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful. Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctors' reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your child; the more you know, the more effectively you can advocate.
For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a Federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide.
By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child's Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the child's goals. When your child's IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or her needs best. Once your child's IEP is developed, a meeting is scheduled once a year to review your child's progress and to make any alterations to reflect his or her changing needs.
If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child's home or a place familiar to the child. The services provided are written into an Individualized Family Service Plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.
There is a list of resources at the back of the brochure that will be helpful to you as you look for programs for your child.
Treatment Options
There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.
Before you make decisions on your child's treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child's treatment based on your child's needs. You may want to visit public schools in your area to see the type of program they offer to special needs children.
Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments:
* Will the treatment result in harm to my child?
* How will failure of the treatment affect my child and family?
* Has the treatment been validated scientifically?
* Are there assessment procedures specified?
* How will the treatment be integrated into my child's current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.
The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:
* How successful has the program been for other children?
* How many children have gone on to placement in a regular school and how have they performed?
* Do staff members have training and experience in working with children and adolescents with autism?
* How are activities planned and organized?
* Are there predictable daily schedules and routines?
* How much individual attention will my child receive?
* How is progress measured? Will my child's behavior be closely observed and recorded?
* Will my child be given tasks and rewards that are personally motivating?
* Is the environment designed to minimize distractions?
* Will the program prepare me to continue the therapy at home?
* What is the cost, time commitment, and location of the program?
Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states, "Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior."19 The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child-teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.
An effective treatment program will build on the child's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programs are beginning to train parents to continue the therapy at home.
As soon as a child's disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skills activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.
Children older than 3 years usually have school-based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.
In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child's needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher-functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.
During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living.24
All through your child's school years, you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child's progress.
The Adolescent Years--
Adolescence is a time of stress and confusion; and it is no less so for teenagers with autism. Like all children, they need help in dealing with their budding sexuality. While some behaviors improve during the teenage years, some get worse. Increased autistic or aggressive behavior may be one way some teens express their newfound tension and confusion.
The teenage years are also a time when children become more socially sensitive. At the age that most teenagers are concerned with acne, popularity, grades, and dates, teens with autism may become painfully aware that they are different from their peers. They may notice that they lack friends. And unlike their schoolmates, they aren't dating or planning for a career. For some, the sadness that comes with such realization motivates them to learn new behaviors and acquire better social skills.
Dietary and Other Interventions
In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with ASD. Although an unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials, that would allow for a comparison between treatment and no treatment. Following are some of the interventions that have been reported to have been helpful to some children but whose efficacy or safety has not been proven.
Dietary interventions are based on the idea that 1) food allergies cause symptoms of autism, and 2) an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If parents decide to try for a given period of time a special diet, they should be sure that the child's nutritional status is measured carefully.
A diet that some parents have found was helpful to their autistic child is a gluten-free, casein-free diet. Gluten is a casein-like substance that is found in the seeds of various cereal plants—wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is difficult.
A supplement that some parents feel is beneficial for an autistic child is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some children respond positively, some negatively, some not at all or very little.5
In the search for treatment for autism, there has been discussion in the last few years about the use of secretin, a substance approved by the Food and Drug Administration (FDA) for a single dose normally given to aid in diagnosis of a gastrointestinal problem. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between patients who received secretin and those who received a placebo.
Medications Used in Treatment
Medications are often used to treat behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed "off-label." This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.
A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the "patient insert" that comes with your child's medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.
Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI's) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older.4 Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI's safely, effectively, and at the lowest dose possible.
Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems.26 However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.
Placebo-controlled studies of the newer "atypical" antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).27 Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.
Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.
Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children.
Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child's unique history and behavior will help your doctor decide which medication might be most beneficial.
Adults with an Autism Spectrum Disorder
Some adults with ASD, especially those with high-functioning autism or with Asperger syndrome, are able to work successfully in mainstream jobs. Nevertheless, communication and social problems often cause difficulties in many areas of life. They will continue to need encouragement and moral support in their struggle for an independent life.
Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.
The public schools' responsibility for providing services ends when the person with ASD reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals. Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know other parents of ASD adults, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved employment services. Research the resources listed in the back of this brochure to learn as much as possible about the help your child is eligible to receive as an adult.
Living Arrangements for the Adult with an Autism Spectrum Disorder
Independent living. Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.
Living at home. Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.
Foster homes and skill-development homes. Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.
Supervised group living. Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.
Institutions. Although the trend in recent decades has been to avoid placing persons with disabilities into long-term-care institutions, this alternative is still available for persons with ASD who need intensive, constant supervision. Unlike many of the institutions years ago, today's facilities view residents as individuals with human needs and offer opportunities for recreation and simple but meaningful work.
Research into Causes and Treatment of Autism Spectrum Disorders
Research into the causes, the diagnosis, and the treatment of autism spectrum disorders has advanced in tandem. With new well-researched standardized diagnostic tools, ASD can be diagnosed at an early age. And with early diagnosis, the treatments found to be beneficial in recent years can be used to help the child with ASD develop to his or her greatest potential.
In the past few years, there has been public interest in a theory that suggested a link between the use of thimerosal, a mercury-based preservative used in the measles-mumps-rubella (MMR) vaccine, and autism. Although mercury is no longer found in childhood vaccines in the United States, some parents still have concerns about vaccinations. Many well-done, large-scale studies have now been done that have failed to show a link between thimerosal and autism. A panel from the Institute of Medicine is now examining these studies, including a large Danish study that concluded that there was no causal relationship between childhood vaccination using thimerosal-containing vaccines and the development of an autism spectrum disorder,28 and a U.S. study looking at exposure to mercury, lead, and other heavy metals.
Research on the Biologic Basis of ASD
Because of its relative inaccessibility, scientists have only recently been able to study the brain systematically. But with the emergence of new brain imaging tools—computerized tomography (CT), positron emission tomography (PET), single photon emission computed tomography (SPECT), and magnetic resonance imaging (MRI), study of the structure and the functioning of the brain can be done. With the aid of modern technology and the new availability of both normal and autism tissue samples to do postmortem studies, researchers will be able to learn much through comparative studies.
Postmortem and MRI studies have shown that many major brain structures are implicated in autism. This includes the cerebellum, cerebral cortex, limbic system, corpus callosum, basal ganglia, and brain stem.29 Other research is focusing on the role of neurotransmitters such as serotonin, dopamine, and epinephrine.
Research into the causes of autism spectrum disorders is being fueled by other recent developments. Evidence points to genetic factors playing a prominent role in the causes for ASD. Twin and family studies have suggested an underlying genetic vulnerability to ASD.30 To further research in this field, the Autism Genetic Resource Exchange, a project initiated by the Cure Autism Now Foundation, and aided by an NIMH grant, is recruiting genetic samples from several hundred families. Each family with more than one member diagnosed with ASD is given a 2-hour, in-home screening. With a large number of DNA samples, it is hoped that the most important genes will be found. This will enable scientists to learn what the culprit genes do and how they can go wrong.
Another exciting development is the Autism Tissue Program (http://www.brainbank.org), supported by the Autism Society of America Foundation, the Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute at the University of California, Davis, and the National Alliance for Autism Research. The program is aided by a grant to the Harvard Brain and Tissue Resource Center (http://www.brainbank.mclean.org), funded by the National Institute of Mental Health (NIMH) and the National Institute of Neurological Disorders and Stroke (NINDS). Studies of the postmortem brain with imaging methods will help us learn why some brains are large, how the limbic system develops, and how the brain changes as it ages. Tissue samples can be stained and will show which neurotransmitters are being made in the cells and how they are transported and released to other cells. By focusing on specific brain regions and neurotransmitters, it will become easier to identify susceptibility genes.
Recent neuroimaging studies have shown that a contributing cause for autism may be abnormal brain development beginning in the infant's first months. This "growth dysregulation hypothesis" holds that the anatomical abnormalities seen in autism are caused by genetic defects in brain growth factors. It is possible that sudden, rapid head growth in an infant may be an early warning signal that will lead to early diagnosis and effective biological intervention or possible prevention of autism.
Prevalence
In 2007 - the most recent government survey on the rate of autism - the Centers for Disease Control (CDC) found that the rate is higher than the rates found from studies conducted in the United States during the 1980s and early 1990s (survey based on data from 2000 and 2002). The CDC survey assigned a diagnosis of autism spectrum disorder based on health and school records of 8 year olds in 14 communities throughout the U.S. Debate continues about whether this represents a true increase in the prevalence of autism. Changes in the criteria used to diagnose autism, along with increased recognition of the disorder by professionals and the public may all be contributing factors. Nonetheless, the CDC report confirms other recent epidemiologic studies documenting that more children are being diagnosed with an ASD than ever before.
Data from an earlier report of the CDC's Atlanta-based program found the rate of autism spectrum disorder was 3.4 per 1,000 for children 3 to 10 years of age. Summarizing this and several other major studies on autism prevalence, CDC estimates that 2–6 per 1,000 (from 1 in 500 to 1 in 150) children have an ASD. The risk is 3-4 times higher in males than females. Compared to the prevalence of other childhood conditions, this rate is lower than the rate of mental retardation (9.7 per 1,000 children), but higher than the rates for cerebral palsy (2.8 per 1,000 children), hearing loss (1.1 per 1,000 children), and vision impairment (0.9 per 1,000 children). The CDC notes that these studies do not provide a national estimate.
Fragile X
"For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome2. Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome."
A distinction can be made between a father’s and mother’s ability to pass along to a daughter or son the altered gene on the X chromosome that is linked to fragile X syndrome. Because both males (XY) and females (XX) have at least one X chromosome, both can pass on the mutated gene to their children.
A father with the altered gene for Fragile X on his X chromosome will only pass that gene on to his daughters. He passes a Y chromosome on to his sons, which doesn’t transmit the condition. Therefore, if the father has the altered gene on his X chromosome, but the mother’s X chromosomes are normal, all of the couple’s daughters would have the altered gene for Fragile X, while none of their sons would have the mutated gene.
Because mothers pass on only X chromosomes to their children, if the mother has the altered gene for Fragile X, she can pass that gene to either her sons or her daughters. If the mother has the mutated gene on one X chromosome and has one normal X chromosome, and the father has no genetic mutations, all the children have a 50-50 chance of inheriting the mutated gene.
The odds noted here apply to each child the parents have.3
In terms of prevalence, the latest statistics are consistent in showing that 5% of people with autism are affected by fragile X and 10% to 15% of those with fragile X show autistic traits.
Medications
On October 6, 2006 the U.S. Food and Drug Administration (FDA) approved risperidone (generic name) or Risperdal (brand name) for the symptomatic treatment of irritability in autistic children and adolescents ages 5 to 16. The approval is the first for the use of a drug to treat behaviors associated with autism in children. These behaviors are included under the general heading of irritability, and include aggression, deliberate self-injury and temper tantrums.
Olanzapine (Zyprexa) and other antipsychotic medications are used “off-label” for the treatment of aggression and other serious behavioral disturbances in children, including children with autism. Off-label means a doctor will prescribe a medication to treat a disorder or in an age group that is not included among those approved by the FDA.
Other medications are used to address symptoms or other disorders in children with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are approved by the FDA for children age 7 and older with obsessive-compulsive disorder. Fluoxetine is also approved for children age 8 and older for the treatment of depression.
Fluoxetine and sertraline are antidepressants known as selective serotonin reuptake inhibitors (SSRIs). Despite the relative safety and popularity of SSRIs and other antidepressants, some studies have suggested that they may have unintentional effects on some people, especially adolescents and young adults. In 2004, after a thorough review of data, the Food and Drug Administration (FDA) adopted a “black box” warning label on all antidepressant medications to alert the public about the potential increased risk of suicidal thinking or attempts in children and adolescents taking antidepressants. In 2007, the agency extended the warning to include young adults up to age 25. A “black box” warning is the most serious type of warning on prescription drug labeling. The warning emphasizes that children, adolescents and young adults taking antidepressants should be closely monitored, especially during the initial weeks of treatment, for any worsening depression, suicidal thinking or behavior, or any unusual changes in behavior such as sleeplessness, agitation, or withdrawal from normal social situations.
Disorders/Vaccinations
The Institute of Medicine (IOM) conducted a thorough review on the issue of a link between thimerosal (a mercury based preservative that is no longer used in vaccinations) and autism. The final report from IOM, Immunization Safety Review: Vaccines and Autism, released in May 2004, stated that the committee did not find a link.
Until 1999, vaccines given to infants to protect them against diphtheria, tetanus, pertussis, Haemophilus influenzae type b (Hib), and Hepatitis B contained thimerosal as a preservative. Today, with the exception of some flu vaccines, none of the vaccines used in the U.S. to protect preschool aged children against 12 infectious diseases contain thimerosal as a preservative. The MMR vaccine does not and never did contain thimerosal. Varicella (chickenpox), inactivated polio (IPV), and pneumococcal conjugate vaccines have also never contained thimerosal.
A U.S. study looking at environmental factors including exposure to mercury, lead and other heavy metals is ongoing.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
The autism spectrum disorders can often be reliably detected by the age of 3 years, and in some cases as early as 18 months.2 Studies suggest that many children eventually may be accurately identified by the age of 1 year or even younger. The appearance of any of the warning signs of ASD is reason to have a child evaluated by a professional specializing in these disorders.
Parents are usually the first to notice unusual behaviors in their child. In some cases, the baby seemed "different" from birth, unresponsive to people or focusing intently on one item for long periods of time. The first signs of an ASD can also appear in children who seem to have been developing normally. When an engaging, babbling toddler suddenly becomes silent, withdrawn, self-abusive, or indifferent to social overtures, something is wrong. Research has shown that parents are usually correct about noticing developmental problems, although they may not realize the specific nature or degree of the problem.
The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder.
Rare Autism Spectrum Disorders--
Rett Syndrome
Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl's mental and social development regresses—she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.
Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and improving the quality of life these children experience.*
Childhood Disintegrative Disorder
Very few children who have an autism spectrum disorder (ASD) diagnosis meet the criteria for childhood disintegrative disorder (CDD). An estimate based on four surveys of ASD found fewer than two children per 100,000 with ASD could be classified as having CDD. This suggests that CDD is a very rare form of ASD. It has a strong male preponderance.** Symptoms may appear by age 2, but the average age of onset is between 3 and 4 years. Until this time, the child has age-appropriate skills in communication and social relationships. The long period of normal development before regression helps differentiate CDD from Rett syndrome.
The loss of such skills as vocabulary are more dramatic in CDD than they are in classical autism. The diagnosis requires extensive and pronounced losses involving motor, language, and social skills.*** CDD is also accompanied by loss of bowel and bladder control and oftentimes seizures and a very low IQ.
What Are the Autism Spectrum Disorders?
The autism spectrum disorders are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome.2 Prevalence studies have been done in several states and also in the United Kingdom, Europe, and Asia. A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 children 3-10 years old had autism.3 This wide range of prevalence points to a need for earlier and more accurate screening for the symptoms of ASD. The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions. Pediatricians, family physicians, daycare providers, teachers, and parents may initially dismiss signs of ASD, optimistically thinking the child is just a little slow and will "catch up." Although early intervention has a dramatic impact on reducing symptoms and increasing a child's ability to grow and learn new skills, it is estimated that only 50 percent of children are diagnosed before kindergarten.
All children with ASD demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communication, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences, such as certain sounds or the way objects look. Each of these symptoms runs the gamut from mild to severe. They will present in each individual child differently. For instance, a child may have little trouble learning to read but exhibit extremely poor social interaction. Each child will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.
Children with ASD do not follow the typical patterns of child development. In some children, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the child lags further behind other children the same age. Some other children start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to people and other unusual behaviors become apparent. Some parents report the change as being sudden, and that their children start to reject people, act strangely, and lose language and social skills they had previously acquired. In other cases, there is a plateau, or leveling, of progress so that the difference between the child with autism and other children the same age becomes more noticeable.
ASD is defined by a certain set of behaviors that can range from the very mild to the severe. The following possible indicators of ASD were identified on the Public Health Training Network Webcast, Autism Among Us.
Possible Indicators of Autism Spectrum Disorders
* Does not babble, point, or make meaningful gestures by 1 year of age
* Does not speak one word by 16 months
* Does not combine two words by 2 years
* Does not respond to name
* Loses language or social skills
Some Other Indicators
* Poor eye contact
* Doesn't seem to know how to play with toys
* Excessively lines up toys or other objects
* Is attached to one particular toy or object
* Doesn't smile
* At times seems to be hearing impaired
Social Symptoms
From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.
In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parents' displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to "read." To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.
Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues—whether a smile, a wink, or a grimace—may have little meaning. To a child who misses these cues, "Come here" always means the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other people's actions.
Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of "immature" behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to "lose control," particularly when they're in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms.
Communication Difficulties
By age 3, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is "no."
Some children diagnosed with ASD remain mute throughout their lives. Some infants who later show signs of ASD coo and babble during the first few months of life, but they soon stop. Others may be delayed, developing language as late as age 5 to 9. Some children may learn to use communication systems such as pictures or sign language.
Those who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some ASD children parrot what they hear, a condition called echolalia. Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.
Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The "give and take" of normal conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. Another difficulty is often the inability to understand body language, tone of voice, or "phrases of speech." They might interpret a sarcastic expression such as "Oh, that's just great" as meaning it really IS great.
While it can be hard to understand what ASD children are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what they are saying. Also, their tone of voice fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common. Some children with relatively good language skills speak like little adults, failing to pick up on the "kid-speak" that is common in their peers.
Without meaningful gestures or the language to ask for things, people with ASD are at a loss to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, ASD children do whatever they can to get through to others. As people with ASD grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result they may become anxious or depressed.
Repetitive Behaviors
Although children with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.
As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children need, and demand, absolute consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world of confusion.
Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or science topics.
Problems That May Accompany ASD
Sensory problems. When children's perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the child's experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream.
In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.
Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.
Seizures. One in four children with ASD develops seizures, often starting either in early childhood or adolescence. 5 Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a "blackout"), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG (electroencephalogram—recording of the electric currents developed in the brain by means of electrodes applied to the scalp) can help confirm the seizure's presence.
In most cases, seizures can be controlled by a number of medicines called "anticonvulsants." The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective.
Fragile X syndrome. This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome. 6 Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome.
Tuberous Sclerosis. Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to 4 percent of people with ASD also have tuberous sclerosis.7
The Diagnosis of Autism Spectrum Disorders
Although there are many concerns about labeling a young child with an ASD, the earlier the diagnosis of ASD is made, the earlier needed interventions can begin. Evidence over the last 15 years indicates that intensive early intervention in optimal educational settings for at least 2 years during the preschool years results in improved outcomes in most young children with ASD.
In evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASD may be apparent in the first few months of a child's life, or they may appear at any time during the early years. For the diagnosis, problems in at least one of the areas of communication, socialization, or restricted behavior must be present before the age of 3. The diagnosis requires a two-stage process. The first stage involves developmental screening during "well child" check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.
Screening
A "well child" check-up should include a developmental screening test. If your child's pediatrician does not routinely check your child with such a test, ask that it be done. Your own observations and concerns about your child's development will be essential in helping to screen your child.8 Reviewing family videotapes, photos, and baby albums can help parents remember when each behavior was first noticed and when the child reached certain developmental milestones.
Several screening instruments have been developed to quickly gather information about a child's social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT),9 the modified Checklist for Autism in Toddlers (M-CHAT),10 the Screening Tool for Autism in Two-Year-Olds (STAT),11 and the Social Communication Questionnaire (SCQ)12 (for children 4 years of age and older).
Some screening instruments rely solely on parent responses to a questionnaire, and some rely on a combination of parent report and observation. Key items on these instruments that appear to differentiate children with autism from other groups before the age of 2 include pointing and pretend play. Screening instruments do not provide individual diagnosis but serve to assess the need for referral for possible diagnosis of ASD. These screening methods may not identify children with mild ASD, such as those with high-functioning autism or Asperger syndrome.
During the last few years, screening instruments have been devised to screen for Asperger syndrome and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ),13 the Australian Scale for Asperger's Syndrome,14 and the most recent, the Childhood Asperger Syndrome Test (CAST),15 are some of the instruments that are reliable for identification of school-age children with Asperger syndrome or higher functioning autism. These tools concentrate on social and behavioral impairments in children without significant language delay.
If, following the screening process or during a routine "well child" check-up, your child's doctor sees any of the possible indicators of ASD, further evaluation is indicated.
Comprehensive Diagnostic Evaluation
The second stage of diagnosis must be comprehensive in order to accurately rule in or rule out an ASD or other developmental problem. This evaluation may be done by a multidisciplinary team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASD.
Because ASDs are complex disorders and may involve other neurological or genetic problems, a comprehensive evaluation should entail neurologic and genetic assessment, along with in-depth cognitive and language testing.8 In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)16 and the Autism Diagnostic Observation Schedule (ADOS-G).17 The ADI-R is a structured interview that contains over 100 items and is conducted with a caregiver. It consists of four main factors—the child's communication, social interaction, repetitive behaviors, and age-of-onset symptoms. The ADOS-G is an observational measure used to "press" for socio-communicative behaviors that are often delayed, abnormal, or absent in children with ASD.
Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS).18 It aids in evaluating the child's body movements, adaptation to change, listening response, verbal communication, and relationship to people. It is suitable for use with children over 2 years of age. The examiner observes the child and also obtains relevant information from the parents. The child's behavior is rated on a scale based on deviation from the typical behavior of children of the same age.
Two other tests that should be used to assess any child with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some children with ASD may be incorrectly thought to have such a loss. In addition, if the child has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for children who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Children with an autistic disorder usually have elevated blood lead levels.8
Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the child, assessing the child's unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the parents to explain the results of the evaluation.
Although parents may have been aware that something was not "quite right" with their child, when the diagnosis is given, it is a devastating blow. At such a time, it is hard to stay focused on asking questions. But while members of the evaluation team are together is the best opportunity the parents will have to ask questions and get recommendations on what further steps they should take for their child. Learning as much as possible at this meeting is very important, but it is helpful to leave this meeting with the name or names of professionals who can be contacted if the parents have further questions.
Available Aids
When your child has been evaluated and diagnosed with an autism spectrum disorder, you may feel inadequate to help your child develop to the fullest extent of his or her ability. As you begin to look at treatment options and at the types of aid available for a child with a disability, you will find out that there is help for you. It is going to be difficult to learn and remember everything you need to know about the resources that will be most helpful. Write down everything. If you keep a notebook, you will have a foolproof method of recalling information. Keep a record of the doctors' reports and the evaluation your child has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your child; the more you know, the more effectively you can advocate.
For every child eligible for special programs, each state guarantees special education and related services. The Individuals with Disabilities Education Act (IDEA) is a Federally mandated program that assures a free and appropriate public education for children with diagnosed learning deficits. Usually children are placed in public schools and the school district pays for all necessary services. These will include, as needed, services by a speech therapist, occupational therapist, school psychologist, social worker, school nurse, or aide.
By law, the public schools must prepare and carry out a set of instruction goals, or specific skills, for every child in a special education program. The list of skills is known as the child's Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the child's goals. When your child's IEP is developed, you will be asked to attend the meeting. There will be several people at this meeting, including a special education teacher, a representative of the public schools who is knowledgeable about the program, other individuals invited by the school or by you (you may want to bring a relative, a child care provider, or a supportive close friend who knows your child well). Parents play an important part in creating the program, as they know their child and his or her needs best. Once your child's IEP is developed, a meeting is scheduled once a year to review your child's progress and to make any alterations to reflect his or her changing needs.
If your child is under 3 years of age and has special needs, he or she should be eligible for an early intervention program; this program is available in every state. Each state decides which agency will be the lead agency in the early intervention program. The early intervention services are provided by workers qualified to care for toddlers with disabilities and are usually in the child's home or a place familiar to the child. The services provided are written into an Individualized Family Service Plan (IFSP) that is reviewed at least once every 6 months. The plan will describe services that will be provided to the child, but will also describe services for parents to help them in daily activities with their child and for siblings to help them adjust to having a brother or sister with ASD.
There is a list of resources at the back of the brochure that will be helpful to you as you look for programs for your child.
Treatment Options
There is no single best treatment package for all children with ASD. One point that most professionals agree on is that early intervention is important; another is that most individuals with ASD respond well to highly structured, specialized programs.
Before you make decisions on your child's treatment, you will want to gather information about the various options available. Learn as much as you can, look at all the options, and make your decision on your child's treatment based on your child's needs. You may want to visit public schools in your area to see the type of program they offer to special needs children.
Guidelines used by the Autism Society of America include the following questions parents can ask about potential treatments:
* Will the treatment result in harm to my child?
* How will failure of the treatment affect my child and family?
* Has the treatment been validated scientifically?
* Are there assessment procedures specified?
* How will the treatment be integrated into my child's current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.
The National Institute of Mental Health suggests a list of questions parents can ask when planning for their child:
* How successful has the program been for other children?
* How many children have gone on to placement in a regular school and how have they performed?
* Do staff members have training and experience in working with children and adolescents with autism?
* How are activities planned and organized?
* Are there predictable daily schedules and routines?
* How much individual attention will my child receive?
* How is progress measured? Will my child's behavior be closely observed and recorded?
* Will my child be given tasks and rewards that are personally motivating?
* Is the environment designed to minimize distractions?
* Will the program prepare me to continue the therapy at home?
* What is the cost, time commitment, and location of the program?
Among the many methods available for treatment and education of people with autism, applied behavior analysis (ABA) has become widely accepted as an effective treatment. Mental Health: A Report of the Surgeon General states, "Thirty years of research demonstrated the efficacy of applied behavioral methods in reducing inappropriate behavior and in increasing communication, learning, and appropriate social behavior."19 The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one child-teacher interaction for 40 hours a week, laid a foundation for other educators and researchers in the search for further effective early interventions to help those with ASD attain their potential. The goal of behavioral management is to reinforce desirable behaviors and reduce undesirable ones.
An effective treatment program will build on the child's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programs are beginning to train parents to continue the therapy at home.
As soon as a child's disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In children younger than 3 years, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and initiative of interaction. Included are behavioral methods, communication, occupational and physical therapy along with social play interventions. Often the day will begin with a physical activity to help develop coordination and body awareness; children string beads, piece puzzles together, paint, and participate in other motor skills activities. At snack time the teacher encourages social interaction and models how to use language to ask for more juice. The children learn by doing. Working with the children are students, behavioral therapists, and parents who have received extensive training. In teaching the children, positive reinforcement is used.
Children older than 3 years usually have school-based, individualized, special education. The child may be in a segregated class with other autistic children or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the children learn social skills and functional communication. In these programs, teachers often involve the parents, giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.
In elementary school, the child should receive help in any skill area that is delayed and, at the same time, be encouraged to grow in his or her areas of strength. Ideally, the curriculum should be adapted to the individual child's needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for a part of the day. This instruction should include such skills as learning how to act in social situations and in making friends. Although higher-functioning children may be able to handle academic work, they too need help to organize tasks and avoid distractions.
During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living.24
All through your child's school years, you will want to be an active participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child's progress.
The Adolescent Years--
Adolescence is a time of stress and confusion; and it is no less so for teenagers with autism. Like all children, they need help in dealing with their budding sexuality. While some behaviors improve during the teenage years, some get worse. Increased autistic or aggressive behavior may be one way some teens express their newfound tension and confusion.
The teenage years are also a time when children become more socially sensitive. At the age that most teenagers are concerned with acne, popularity, grades, and dates, teens with autism may become painfully aware that they are different from their peers. They may notice that they lack friends. And unlike their schoolmates, they aren't dating or planning for a career. For some, the sadness that comes with such realization motivates them to learn new behaviors and acquire better social skills.
Dietary and Other Interventions
In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with ASD. Although an unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind trials, that would allow for a comparison between treatment and no treatment. Following are some of the interventions that have been reported to have been helpful to some children but whose efficacy or safety has not been proven.
Dietary interventions are based on the idea that 1) food allergies cause symptoms of autism, and 2) an insufficiency of a specific vitamin or mineral may cause some autistic symptoms. If parents decide to try for a given period of time a special diet, they should be sure that the child's nutritional status is measured carefully.
A diet that some parents have found was helpful to their autistic child is a gluten-free, casein-free diet. Gluten is a casein-like substance that is found in the seeds of various cereal plants—wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and milk are found in many of the foods we eat, following a gluten-free, casein-free diet is difficult.
A supplement that some parents feel is beneficial for an autistic child is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some children respond positively, some negatively, some not at all or very little.5
In the search for treatment for autism, there has been discussion in the last few years about the use of secretin, a substance approved by the Food and Drug Administration (FDA) for a single dose normally given to aid in diagnosis of a gastrointestinal problem. Anecdotal reports have shown improvement in autism symptoms, including sleep patterns, eye contact, language skills, and alertness. Several clinical trials conducted in the last few years have found no significant improvements in symptoms between patients who received secretin and those who received a placebo.
Medications Used in Treatment
Medications are often used to treat behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, that keep the person with ASD from functioning more effectively at home or school. The medications used are those that have been developed to treat similar symptoms in other disorders. Many of these medications are prescribed "off-label." This means they have not been officially approved by the FDA for use in children, but the doctor prescribes the medications if he or she feels they are appropriate for your child. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of children and adolescents.
A child with ASD may not respond in the same way to medications as typically developing children. It is important that parents work with a doctor who has experience with children with autism. A child should be monitored closely while taking a medication. The doctor will prescribe the lowest dose possible to be effective. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the "patient insert" that comes with your child's medication. Some people keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.
Anxiety and depression. The selective serotonin reuptake inhibitors (SSRI's) are the medications most often prescribed for symptoms of anxiety, depression, and/or obsessive-compulsive disorder (OCD). Only one of the SSRI's, fluoxetine, (Prozac®) has been approved by the FDA for both OCD and depression in children age 7 and older. Three that have been approved for OCD are fluvoxamine (Luvox®), age 8 and older; sertraline (Zoloft®), age 6 and older; and clomipramine (Anafranil®), age 10 and older.4 Treatment with these medications can be associated with decreased frequency of repetitive, ritualistic behavior and improvements in eye contact and social contacts. The FDA is studying and analyzing data to better understand how to use the SSRI's safely, effectively, and at the lowest dose possible.
Behavioral problems. Antipsychotic medications have been used to treat severe behavioral problems. These medications work by reducing the activity in the brain of the neurotransmitter dopamine. Among the older, typical antipsychotics, such as haloperidol (Haldol®), thioridazine, fluphenazine, and chlorpromazine, haloperidol was found in more than one study to be more effective than a placebo in treating serious behavioral problems.26 However, haloperidol, while helpful for reducing symptoms of aggression, can also have adverse side effects, such as sedation, muscle stiffness, and abnormal movements.
Placebo-controlled studies of the newer "atypical" antipsychotics are being conducted on children with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).27 Results of the 8-week study were reported in 2002 and showed that risperidone was effective and well tolerated for the treatment of severe behavioral problems in children with autism. The most common side effects were increased appetite, weight gain and sedation. Further long-term studies are needed to determine any long-term side effects. Other atypical antipsychotics that have been studied recently with encouraging results are olanzapine (Zyprexa®) and ziprasidone (Geodon®). Ziprasidone has not been associated with significant weight gain.
Seizures. Seizures are found in one in four persons with ASD, most often in those who have low IQ or are mute. They are treated with one or more of the anticonvulsants. These include such medications as carbamazepine (Tegretol®), lamotrigine (Lamictal®), topiramate (Topamax®), and valproic acid (Depakote®). The level of the medication in the blood should be monitored carefully and adjusted so that the least amount possible is used to be effective. Although medication usually reduces the number of seizures, it cannot always eliminate them.
Inattention and hyperactivity. Stimulant medications such as methylphenidate (Ritalin®), used safely and effectively in persons with attention deficit hyperactivity disorder, have also been prescribed for children with autism. These medications may decrease impulsivity and hyperactivity in some children, especially those higher functioning children.
Several other medications have been used to treat ASD symptoms; among them are other antidepressants, naltrexone, lithium, and some of the benzodiazepines such as diazepam (Valium®) and lorazepam (Ativan®). The safety and efficacy of these medications in children with autism has not been proven. Since people may respond differently to different medications, your child's unique history and behavior will help your doctor decide which medication might be most beneficial.
Adults with an Autism Spectrum Disorder
Some adults with ASD, especially those with high-functioning autism or with Asperger syndrome, are able to work successfully in mainstream jobs. Nevertheless, communication and social problems often cause difficulties in many areas of life. They will continue to need encouragement and moral support in their struggle for an independent life.
Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.
The public schools' responsibility for providing services ends when the person with ASD reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals. Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know other parents of ASD adults, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved employment services. Research the resources listed in the back of this brochure to learn as much as possible about the help your child is eligible to receive as an adult.
Living Arrangements for the Adult with an Autism Spectrum Disorder
Independent living. Some adults with ASD are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances or dealing with the government agencies that provide services to persons with disabilities. This assistance can be provided by family, a professional agency, or another type of provider.
Living at home. Government funds are available for families that choose to have their adult child with ASD live at home. These programs include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid waivers, and others. Information about these programs is available from the Social Security Administration (SSA). An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible.
Foster homes and skill-development homes. Some families open their homes to provide long-term care to unrelated adults with disabilities. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.
Supervised group living. Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Higher functioning persons may be able to live in a home or apartment where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.
Institutions. Although the trend in recent decades has been to avoid placing persons with disabilities into long-term-care institutions, this alternative is still available for persons with ASD who need intensive, constant supervision. Unlike many of the institutions years ago, today's facilities view residents as individuals with human needs and offer opportunities for recreation and simple but meaningful work.
Research into Causes and Treatment of Autism Spectrum Disorders
Research into the causes, the diagnosis, and the treatment of autism spectrum disorders has advanced in tandem. With new well-researched standardized diagnostic tools, ASD can be diagnosed at an early age. And with early diagnosis, the treatments found to be beneficial in recent years can be used to help the child with ASD develop to his or her greatest potential.
In the past few years, there has been public interest in a theory that suggested a link between the use of thimerosal, a mercury-based preservative used in the measles-mumps-rubella (MMR) vaccine, and autism. Although mercury is no longer found in childhood vaccines in the United States, some parents still have concerns about vaccinations. Many well-done, large-scale studies have now been done that have failed to show a link between thimerosal and autism. A panel from the Institute of Medicine is now examining these studies, including a large Danish study that concluded that there was no causal relationship between childhood vaccination using thimerosal-containing vaccines and the development of an autism spectrum disorder,28 and a U.S. study looking at exposure to mercury, lead, and other heavy metals.
Research on the Biologic Basis of ASD
Because of its relative inaccessibility, scientists have only recently been able to study the brain systematically. But with the emergence of new brain imaging tools—computerized tomography (CT), positron emission tomography (PET), single photon emission computed tomography (SPECT), and magnetic resonance imaging (MRI), study of the structure and the functioning of the brain can be done. With the aid of modern technology and the new availability of both normal and autism tissue samples to do postmortem studies, researchers will be able to learn much through comparative studies.
Postmortem and MRI studies have shown that many major brain structures are implicated in autism. This includes the cerebellum, cerebral cortex, limbic system, corpus callosum, basal ganglia, and brain stem.29 Other research is focusing on the role of neurotransmitters such as serotonin, dopamine, and epinephrine.
Research into the causes of autism spectrum disorders is being fueled by other recent developments. Evidence points to genetic factors playing a prominent role in the causes for ASD. Twin and family studies have suggested an underlying genetic vulnerability to ASD.30 To further research in this field, the Autism Genetic Resource Exchange, a project initiated by the Cure Autism Now Foundation, and aided by an NIMH grant, is recruiting genetic samples from several hundred families. Each family with more than one member diagnosed with ASD is given a 2-hour, in-home screening. With a large number of DNA samples, it is hoped that the most important genes will be found. This will enable scientists to learn what the culprit genes do and how they can go wrong.
Another exciting development is the Autism Tissue Program (http://www.brainbank.org), supported by the Autism Society of America Foundation, the Medical Investigation of Neurodevelopmental Disorders (M.I.N.D.) Institute at the University of California, Davis, and the National Alliance for Autism Research. The program is aided by a grant to the Harvard Brain and Tissue Resource Center (http://www.brainbank.mclean.org), funded by the National Institute of Mental Health (NIMH) and the National Institute of Neurological Disorders and Stroke (NINDS). Studies of the postmortem brain with imaging methods will help us learn why some brains are large, how the limbic system develops, and how the brain changes as it ages. Tissue samples can be stained and will show which neurotransmitters are being made in the cells and how they are transported and released to other cells. By focusing on specific brain regions and neurotransmitters, it will become easier to identify susceptibility genes.
Recent neuroimaging studies have shown that a contributing cause for autism may be abnormal brain development beginning in the infant's first months. This "growth dysregulation hypothesis" holds that the anatomical abnormalities seen in autism are caused by genetic defects in brain growth factors. It is possible that sudden, rapid head growth in an infant may be an early warning signal that will lead to early diagnosis and effective biological intervention or possible prevention of autism.
Prevalence
In 2007 - the most recent government survey on the rate of autism - the Centers for Disease Control (CDC) found that the rate is higher than the rates found from studies conducted in the United States during the 1980s and early 1990s (survey based on data from 2000 and 2002). The CDC survey assigned a diagnosis of autism spectrum disorder based on health and school records of 8 year olds in 14 communities throughout the U.S. Debate continues about whether this represents a true increase in the prevalence of autism. Changes in the criteria used to diagnose autism, along with increased recognition of the disorder by professionals and the public may all be contributing factors. Nonetheless, the CDC report confirms other recent epidemiologic studies documenting that more children are being diagnosed with an ASD than ever before.
Data from an earlier report of the CDC's Atlanta-based program found the rate of autism spectrum disorder was 3.4 per 1,000 for children 3 to 10 years of age. Summarizing this and several other major studies on autism prevalence, CDC estimates that 2–6 per 1,000 (from 1 in 500 to 1 in 150) children have an ASD. The risk is 3-4 times higher in males than females. Compared to the prevalence of other childhood conditions, this rate is lower than the rate of mental retardation (9.7 per 1,000 children), but higher than the rates for cerebral palsy (2.8 per 1,000 children), hearing loss (1.1 per 1,000 children), and vision impairment (0.9 per 1,000 children). The CDC notes that these studies do not provide a national estimate.
Fragile X
"For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome2. Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome."
A distinction can be made between a father’s and mother’s ability to pass along to a daughter or son the altered gene on the X chromosome that is linked to fragile X syndrome. Because both males (XY) and females (XX) have at least one X chromosome, both can pass on the mutated gene to their children.
A father with the altered gene for Fragile X on his X chromosome will only pass that gene on to his daughters. He passes a Y chromosome on to his sons, which doesn’t transmit the condition. Therefore, if the father has the altered gene on his X chromosome, but the mother’s X chromosomes are normal, all of the couple’s daughters would have the altered gene for Fragile X, while none of their sons would have the mutated gene.
Because mothers pass on only X chromosomes to their children, if the mother has the altered gene for Fragile X, she can pass that gene to either her sons or her daughters. If the mother has the mutated gene on one X chromosome and has one normal X chromosome, and the father has no genetic mutations, all the children have a 50-50 chance of inheriting the mutated gene.
The odds noted here apply to each child the parents have.3
In terms of prevalence, the latest statistics are consistent in showing that 5% of people with autism are affected by fragile X and 10% to 15% of those with fragile X show autistic traits.
Medications
On October 6, 2006 the U.S. Food and Drug Administration (FDA) approved risperidone (generic name) or Risperdal (brand name) for the symptomatic treatment of irritability in autistic children and adolescents ages 5 to 16. The approval is the first for the use of a drug to treat behaviors associated with autism in children. These behaviors are included under the general heading of irritability, and include aggression, deliberate self-injury and temper tantrums.
Olanzapine (Zyprexa) and other antipsychotic medications are used “off-label” for the treatment of aggression and other serious behavioral disturbances in children, including children with autism. Off-label means a doctor will prescribe a medication to treat a disorder or in an age group that is not included among those approved by the FDA.
Other medications are used to address symptoms or other disorders in children with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are approved by the FDA for children age 7 and older with obsessive-compulsive disorder. Fluoxetine is also approved for children age 8 and older for the treatment of depression.
Fluoxetine and sertraline are antidepressants known as selective serotonin reuptake inhibitors (SSRIs). Despite the relative safety and popularity of SSRIs and other antidepressants, some studies have suggested that they may have unintentional effects on some people, especially adolescents and young adults. In 2004, after a thorough review of data, the Food and Drug Administration (FDA) adopted a “black box” warning label on all antidepressant medications to alert the public about the potential increased risk of suicidal thinking or attempts in children and adolescents taking antidepressants. In 2007, the agency extended the warning to include young adults up to age 25. A “black box” warning is the most serious type of warning on prescription drug labeling. The warning emphasizes that children, adolescents and young adults taking antidepressants should be closely monitored, especially during the initial weeks of treatment, for any worsening depression, suicidal thinking or behavior, or any unusual changes in behavior such as sleeplessness, agitation, or withdrawal from normal social situations.
Disorders/Vaccinations
The Institute of Medicine (IOM) conducted a thorough review on the issue of a link between thimerosal (a mercury based preservative that is no longer used in vaccinations) and autism. The final report from IOM, Immunization Safety Review: Vaccines and Autism, released in May 2004, stated that the committee did not find a link.
Until 1999, vaccines given to infants to protect them against diphtheria, tetanus, pertussis, Haemophilus influenzae type b (Hib), and Hepatitis B contained thimerosal as a preservative. Today, with the exception of some flu vaccines, none of the vaccines used in the U.S. to protect preschool aged children against 12 infectious diseases contain thimerosal as a preservative. The MMR vaccine does not and never did contain thimerosal. Varicella (chickenpox), inactivated polio (IPV), and pneumococcal conjugate vaccines have also never contained thimerosal.
A U.S. study looking at environmental factors including exposure to mercury, lead and other heavy metals is ongoing.
The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.
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