Autism Diagnosis

Autism Diagnosis: Where do we start?

If you have just received a diagnosis of autism, you are most likely feeling very anxious about your child's future.

The first step is to arm yourself with as much information about autism as you can.

Make sure you find this information from credible sources, and don't believe everything you read!

Although your child has a diagnosis of autism, his or her abilities are going to vary from any other child with autism.

There are some key features of autism that probably led to the diagnosis, but how they affect your child will as individual as any child.

Based on your child's needs, there are some assessments and professionals you should consider.

Communication is a common problem area for children with autism.

Contact a speech therapist to assist you in evaluating your child's strengths and needs.

Finding the appropriate communication system will help your child tremendously across all environments.

Your child may be verbal, but need some training in initiating communication.

If your child is non-verbal, there are a variety of communication systems, sign-language, PECS (using pictures and symbols), or communication boards.

Have an occupational therapist assess your child for sensory dysfunction.

Autistic children sometimes have difficulty taking in sensory information and organizing it for future use.

Planning a sensory integration program can help your child organize their sensory input and reduce sensitivity to a variety of sensory information.

Create a routine within your home, for you child, and to the extent possible don't vary from that routine.

Autism isn't a life sentence for your child.

Prepare yourself to turn to others for support.

Join a local support group and/or an online message board where you can ask other parents for information.

Be willing to learn from others, and be willing to accept assistance from others.

Help the rest of your family learn what they can about autism.

Be an advocate for your child.

You know your child better than anyone else, and no one will love your child like you do.

The Parenting Autism Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Autism.

What are the long term outcomes for people with Aspergers?

The long term outcomes for those with Aspergers syndrome (high functioning autism) depends on the severity of their symptoms, their baseline IQ, their ability to communicate and what kinds of interventions and support they receive. Those who come from supportive families, retain a reasonable sense of self-esteem, and become relatively well-educated, stand a good chance of getting into solid relationships, finding good jobs and having a normal life.

In other cases, the Aspergers symptoms are severe enough to affect speech and interpersonal relationship or the individual’s IQ is low enough to impair their ability to find a good job, leaving them with a low paying job or on disability.

Because some Aspergers syndrome individuals suffer from depression and OCD as adults, these secondary characteristics can negatively impact how an Aspergers syndrome individual develops and grows into adulthood. Some have landed in prison for violent behavior against others.

Several research studies have looked at outcome in Aspergers syndrome. In one study, outcome was looked at in a cross section of sufferers. After a five year followup using specific outcome criteria, the outcome in Aspergers syndrome was found to be good in 27% of cases. However, in 26% of cases, the individual maintained a very restricted life, with no occupation/activity to occupy their time and no friends.

Another study looked at outcome in those who had Aspergers syndrome to see which factors were more related to a poor or good outcome over time. It was found that language and communication skills were the greatest predictor of good outcome, with social interaction skills being a secondary predictor. The actual Aspergers symptoms like ritual behaviors and obsessions were less likely predictors of outcome. The study indicated that early intervention directed at improving communication was a good idea.

Finally, researchers studied an 8 year followup of a specialized job program for those with Aspergers syndrome to see if such a program helped improve job outcome. For those with Aspergers syndrome (IQ 60+) over an 8 year period, approximately 68 percent of clients found employment. Of the 192 jobs found, most of the jobs were permanent contract work and most involved administrative, technical or computing work. The study indicated that programs like these can be helpful in improving career outcome in Aspergers syndrome individuals.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.

Aspergers: Research Projects

==> Autism/AS/PDD Research Project Mount Sinai Hospital is doing research on families who have more than one member with an autistic spectrum disorder.

==> Autism Research Institute "ARI is primarily devoted to conducting research, and to disseminating the results of research, on the causes of autism and on methods of preventing, diagnosing and treating autism and other severe behavioral disorders of childhood." -This site also includes information on B6 Vitamin Therapy, MSG, and Secretin.

==> Current Autism Research Projects This is a link to The Autism Research Foundation's web site. Here you'll find information on several ongoing research projects.

==> Autism Research, Dr. Szatmari, McMaster University This webpage was created by the Autism/PDD research team at Chedoke McMaster University, Hamilton, Ontario, Canada. For the past 15 years, Dr. Peter Szatmari and his team have been conducting a variety of research studies in the area of Autism, Asperger Syndrome and PDD. Their page contains information on their research studies, research newsletters, educational resources and more. They are currently seeking participants from families who have two or more children the autism/PDD 



==> University of Cambridge, Cambridge, U.K.
Volunteers Needed for Research Into Asperger Syndrome
We are a team of psychologists at Cambridge University carrying out research studies into Asperger Syndrome (AS). These studies are investigating cognitive aspects, behaviour and personality. Many of these studies simply involve filling in questionnaires and returning them (in prepaid envelopes). Others involve being assessed by one of our team. We would like to hear from parents of childen and teens with AS or HFA and adults with AS or high functioning autism who are interested to receive further details about these different studies (with no committment on your part). If you are interested, please contact Dr. Simon Baron-Cohen by e-mail sb205@cus.cam.ac.uk, visit their web site at Autism Research Centre, or by mail:
Professor Simon Baron-Cohen
Autism Research Centre
Section of Developmental Psychiatry
University of Cambridge
Douglas House
18b Trumpington Road
Cambridge, UK
CB2 2AH 



==> University of Wisconsin-The Waisman Center & Brandeis University - Heller School for Social Policy and Management
Adolescents and Adults with Autism: A Study of Family Caregiving
This project, funded by National Institute of Health, is a "... study of 400 families of people with autism who live in Wisconsin and Massachusetts. Our goals are to describe the quality of life of these families, to assess the extent to which their service needs are adequately met, and to examine the plans they have made and put into place for the future" For more information visit their web site at: http://www.waisman.wisc.edu/family/index.htmlx
 
==> University of Florida - Psychology Department: Seeking Video Tapes of Infants (up to 15 months) of individuals now diagnosed with AS
In our earlier work, we have shown that movement patterns as early as 6 months of age are reliable markers for diagnosing kids at risk of autism. We believe people with AS display the same movement disturbances and therefore can be diagnosed much earlier than is typical by current methods. WE NEED VOLUNTEERS! If you have been diagnosed with AS, or you are a parent with such a child and have home videos taken in infancy (up to 15 months) and are willing to share these videos, please contact us. Videos will copied and the originals will be returned.
Contact:
Professor Philip Teitelbaum
Psychology Department
P.O. Box 112250
University of Florida
Gainesville, FL 32611 e-mail: teitelb@ufl.edu

==> Yale University Child Study Center in conjunction with LDA, is involved in a long-term Asperger Syndrome Research Project. They are actively seeking participants. Visit this page for information on this project and how you can participate.

==>Mount Sinai School of Medicine – Neuroscience PET Laboratory
Research Study: “Diffusion Tensor Imaging in Autism and Asperger’s Disorder”
We are looking for individuals with autism and/or Asperger’s Disorder (18- 40 years old) in the New York City area to participate in a neuroimaging research study. The purpose of this study is to learn more about which areas of the brain are involved in attention and how they connect with each other. By learning more about the mechanisms of attention, the investigators may help the discovery of new treatments for autism, Asperger’s Disorder, and other neurological and psychiatric illnesses.
Your participation will involve three visits to Mount Sinai School of Medicine. The first visit will involve a diagnostic interview to clinically verify your diagnosis. In addition, you will receive a Positron Emission Tomography (PET) scan and a Magnetic Resonance Imaging (MRI) scan on separate days.
If you receive both PET and MRI scans you will receive $200 in reimbursement for your time and expenses. You will receive $100 if you only have one of the scans.
If you are interested in participating in our research study or if you have any questions, please contact Liz LiCalzi at 212-241-6314 or email elizabeth.licalzi@mssm.edu
For more information about the Neuroscience PET Laboratory visit our website: www.mssm.edu/psychiatry/PETlab.shtml
 
==> Massachusetts General Hospital, Charlestown, Massachusetts
Yale Child Study Center, New Haven, CT,
University of Chicago, Chicago, IL
University of Michagan, Ann Arbor, MI
High-Functioning Autism/Asperger Syndrome Study:
Neurobiology and Genetics of Autism and Related Disorders
The goals of this research are to better define the boundaries and clarify the distinctions between HFA and AS, as well as to identify familial patterns of inheritance in these two disorders. This study is a collaborative effort and includes our site at McLean Hospital as well as sites as the Yale Child Study Center, The University of Chicago, and the University of Michigan. This investigation is supported through the NICHD and was just awarded funds for another 5 years of study.
We are currently enrolling families with at least one child between the ages of 6 and 21 with a diagnosis of High Functioning Autism or Asperger Syndrome (IQ >70), and no other significant disorders.
For more information on how you can participate go to:
www.mgh.harvard.edu/allpsych/psychneurogen/psychneuro_research_highfunction.htm
 
==> University of Cambridge - UK
Autism Research Centre
Asperger Syndrome (AS) Sibling Pair Project
We are looking for adults or children who are diagnosed with AS to take part in a new genes project, along with their brothers and sisters.
This new worldwide study involves collecting a DNA sample and a questionnaire from individuals with Asperger Syndrome and their biological brothers and sisters. Providing a DNA sample is quick, easy and a completely painless process. This research may enable us to identify specific genes involved in Asperger Syndrome, furthering our understanding of the condition and possibly leading to earlier diagnosis.
For further information please see:
www.autismresearchcentre.com/volunteers/sib_pair.asp
Or email Sally Wheelwright: sjw18@cam.ac.uk
 
==> Autism Diet and Nutrition Study
University of Delaware, Center for Disabilities Studies
Online survey - looking for participants from throughout the United States
A collaboration of programs and agencies, including the Delaware Division for Developmental Disabilities and the Delaware Department of Education, are interested in the nutritional and dietary needs and concerns of children with autism. During the past decade, a number of professionals, families, and advocates have raised numerous questions about the impact of nutrition and diet on the development of children with autism. Your assistance with determining these needs and concerns is critical.

Click Here to complete the survey



The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.

Aspergers: Causes

Hans Asperger described common symptoms among his patients' family members, especially fathers, and research supports this observation and suggests a genetic contribution to Aspergers. Although no specific gene has yet been identified, multiple factors are believed to play a role in the expression of autism, given the phenotypic variability seen in this group of children.

Evidence for a genetic link is the tendency for Aspergers to run in families and an observed higher incidence of family members who have behavioral symptoms similar to Aspergers, but in a more limited form (e.g., slight difficulties with social interaction, language, or reading).

Most research suggests that all autism spectrum disorders have shared genetic mechanisms, but Aspergers may have a stronger genetic component than autism.

There is probably a common group of genes where particular alleles render an individual vulnerable to developing Aspergers; if this is the case, the particular combination of alleles would determine the severity and symptoms for each individual with Aspergers.

A few autism spectrum disorder cases have been linked to exposure to teratogens (agents that cause birth defects) during the first eight weeks from conception. Although this does not exclude the possibility that autism spectrum disorders can be initiated or affected later, it is strong evidence that it arises very early in development.

Many environmental factors have been hypothesized to act after birth, but none has been confirmed by scientific investigation.

Causes of Autism—

Autism and autism spectrum disorders are complex neurodevelopmental disorders Many causes of autism have been proposed, but its theory of causation is still incomplete.

Heritability contributes about 90% of the risk of a child developing autism, but the genetics of autism are complex and typically it is unclear which genes are responsible.

In rare cases, autism is strongly associated with agents that cause birth defects.

Many other causes have been proposed, such as exposure of children to vaccines; these proposals are controversial and the vaccine hypotheses have no convincing scientific evidence.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.

Aspergers: Characteristics

Aspergers is distinguished by a pattern of symptoms rather than a single symptom. It is characterized by qualitative impairment in social interaction, by stereotyped and restricted patterns of activities and interests, and by no clinically significant delay in cognitive development or general delay in language. Intense preoccupation with a narrow subject, one-sided verbosity, restricted prosody and intonation, and motor clumsiness are typical of the condition, but are not required for diagnosis.

 

Speech and language—

Although children with Aspergers acquire language skills without significant general delay, and the speech of those with Aspergers typically lacks significant abnormalities, language acquisition and use is often atypical. Abnormalities include verbosity; abrupt transitions; literal interpretations and miscomprehension of nuance; use of metaphor meaningful only to the speaker; auditory perception deficits; unusually pedantic, formal or idiosyncratic speech; and oddities in loudness, pitch, intonation, prosody, and rhythm.

Three aspects of communication patterns are of clinical interest: poor prosody, tangential and circumstantial speech, and marked verbosity. Although inflection and intonation may be less rigid or monotonic than in autism, children with Aspergers often have a limited range of intonation; speech may be unusually fast, jerky or loud. Speech may convey a sense of incoherence; the conversational style often includes monologues about topics that bore the listener, fails to provide context for comments, or fails to suppress internal thoughts. Children with Aspergers may fail to monitor whether the listener is interested or engaged in the conversation. The speaker's conclusion or point may never be made, and attempts by the listener to elaborate on the speech's content or logic, or to shift to related topics, are often unsuccessful.

Children with Aspergers may have an unusually sophisticated vocabulary at a young age and have been colloquially called "little professors", but have difficulty understanding figurative language and tend to use language literally. Children with Aspergers appear to have particular weaknesses in areas of nonliteral language that include humor, irony, and teasing. They usually understand the cognitive basis of humor but may not enjoy it due to lack of understanding of its intent.

 

Restricted and repetitive interests and behavior—

Those with Aspergers often display intense interests, such as this boy's fascination with molecular structure. Children with Aspergers display behavior, interests, and activities that are restricted and repetitive and are sometimes abnormally intense or focused. They may stick to inflexible routines or rituals, move in stereotyped and repetitive ways, or preoccupy themselves with parts of objects.

Pursuit of specific and narrow areas of interest is one of the most striking features of Aspergers. Children with Aspergers may collect volumes of detailed information on a relatively narrow topic such as dinosaurs or deep fat fryers, without necessarily having genuine understanding of the broader topic. For example, a kid might memorize camera model numbers while caring little about photography. This behavior is usually apparent by grade school, typically age 5 or 6 in the U.S. Although these special interests may change from time to time, they typically become more unusual and narrowly focused, and often dominate social interaction so much that the entire family may become immersed. Because topics such as dinosaurs often capture the interest of children, this symptom may go unrecognized.

Stereotyped and repetitive motor behaviors are a core part of the diagnosis of Aspergers and other AUTISM SPECTRUM DISORDERS. They include hand movements such as flapping or twisting, and complex whole-body movements. These are typically repeated in longer bursts and look more voluntary or ritualistic than tics, which are usually faster, less rhythmical and less often symmetrical.

 

Social interaction—

The lack of demonstrated empathy is possibly the most dysfunctional aspect of Aspergers. Children with Aspergers experience difficulties in basic elements of social interaction, which may include a failure to develop friendships or enjoy spontaneous interests or achievements with others, a lack of social or emotional reciprocity, and impaired nonverbal behaviors such as eye contact, facial expression, posture, and gesture.

Unlike those with autism, children with Aspergers are not usually withdrawn around others; they approach others, even if awkwardly, for example by engaging in a one-sided, long-winded speech about a favorite topic while being oblivious to the listener's feelings or reactions, such as signs of boredom or haste to leave. This social awkwardness has been called "active but odd". This failure to react appropriately to social interaction may appear as disregard for other children's feelings, and may come across as insensitive.

The cognitive ability of children with Aspergers often lets them articulate social norms in a laboratory context, where they may be able to show a theoretical understanding of other children’s emotions; they typically have difficulty acting on this knowledge in fluid, real-life situations, however. Children with Aspergers may analyze and distill their observation of social interaction into rigid behavioral guidelines and apply these rules in awkward ways—such as forced eye contact—resulting in demeanor that appears rigid or socially naïve. Childhood desires for companionship can be numbed through a history of failed social encounters.

The hypothesis that children with Aspergers are predisposed to violent or criminal behavior has been investigated and found to be unsupported by data. More evidence suggests children with Aspergers are victims rather than victimizers.

 

Other—

Children with Aspergers may have signs or symptoms that are independent of the diagnosis, but can affect the individual or the family. These include differences in perception and problems with motor skills, sleep, and emotions.

Children with Aspergers often have excellent auditory and visual perception. Children with AUTISM SPECTRUM DISORDERS often demonstrate enhanced perception of small changes in patterns such as arrangements of objects or well-known images; typically this is domain-specific and involves processing of fine-grained features. Conversely, compared to children with HFA, children with Aspergers have deficits in some tasks involving visual-spatial perception, auditory perception, or visual memory. Many accounts of children with Aspergers and AUTISM SPECTRUM DISORDERS report other unusual sensory and perceptual skills and experiences. They may be unusually sensitive or insensitive to sound, light, touch, texture, taste, smell, pain, temperature, and other stimuli, and they may exhibit synesthesia, for example, a smell may trigger perception of color; these sensory responses are found in other developmental disorders and are not specific to Aspergers or to AUTISM SPECTRUM DISORDERS. There is little support for increased fight-or-flight response or failure of habituation in autism; there is more evidence of decreased responsiveness to sensory stimuli, although several studies show no differences.

Hans Asperger’s initial accounts and other diagnostic schemes include descriptions of motor clumsiness. Children with Aspergers may be delayed in acquiring motor skills that require motor dexterity, such as bicycle riding or opening a jar, and may appear awkward or "uncomfortable in their own skin". They may be poorly coordinated, or have an odd or bouncy gait or posture, poor handwriting, or problems with visual-motor integration, visual-perceptual skills, and conceptual learning They may show problems with proprioception (sensation of body position) on measures of apraxia (motor planning disorder), balance, tandem gait, and finger-thumb apposition. There is no evidence that these motor skills problems differentiate Aspergers from other high-functioning AUTISM SPECTRUM DISORDERS.

Children with Aspergers are more likely to have sleep problems, including difficulty in falling asleep, frequent nocturnal awakenings, and early morning awakenings. Aspergers is also associated with high levels of alexithymia, which is difficulty in identifying and describing one's emotions. Although Aspergers, lower sleep quality, and alexithymia are associated, their causal relationship is unclear.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.

Aspergers: Classification

Aspergers is one of the autism spectrum disorders (ASD) or pervasive developmental disorders (PDD), which are a spectrum of psychological conditions that are characterized by abnormalities of social interaction and communication that pervade the individual's functioning, and by restricted and repetitive interests and behavior.

Like other psychological development disorders, autism spectrum disorders begin in infancy or childhood, have a steady course without remission or relapse, and have impairments that result from maturation-related changes in various systems of the brain.

Autism spectrum disorders, in turn, are a subset of the broader autism phenotype (BAP), which describes individuals who may not have autism spectrum disorders but do have autistic-like traits (e.g., social deficits).

Of the other four autism spectrum disorder forms, autism is the most similar to Apergers in signs and likely causes, but its diagnosis requires impaired communication and allows delay in cognitive development.

Rett syndrome and childhood disintegrative disorder share several signs with autism, but may have unrelated causes, and pervasive developmental disorder not otherwise specified (PDD-NOS) is diagnosed when the criteria for a more specific disorder are unmet.

The extent of the overlap between Aspergers and high-functioning autism (HFA—autism unaccompanied by mental retardation) is unclear. The current autism spectrum disorder classification may not reflect the true nature of the conditions.


The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.

Asperger Syndrome

Asperger syndrome Classification and external resources
ICD-10	F84.5
ICD-9	299.8
OMIM	608638
DiseasesDB	31268
MedlinePlus	001549
eMedicine	ped/147

Asperger syndrome also called Asperger's syndrome, Asperger's disorder, Asperger's or AS) is one of several autism spectrum disorders (ASD) characterized by difficulties in social interaction and by restricted, stereotyped interests and activities. Aspergers is distinguished from the other ASDs in having no general delay in language or cognitive development. Although not mentioned in standard diagnostic criteria, motor clumsiness and atypical use of language are frequently reported.

Aspergers is named after Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, failed to demonstrate empathy with their peers, and were physically clumsy. Fifty years later, Apergers was recognized in the International Statistical Classification of Diseases and Related Health Problems (ICD-10), and in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as Asperger's Disorder. Questions about many aspects of Aspergers remain: for example, there is lingering doubt about the distinction between Aspergers and high-functioning autism (HFA); partly due to this, the prevalence of Aspergers is not firmly established. The exact cause of Aspergers is unknown, although research supports the likelihood of a genetic basis, and brain imaging techniques have identified structural and functional differences in specific regions of the brain.

There is no single treatment for Aspergers, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of treatment is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and clumsiness. Most individuals with Aspergers can learn to cope with their differences, but may continue to need moral support and encouragement to maintain an independent life. Researchers and people with Aspergers have contributed to a shift in attitudes away from the notion that Aspergers is a deviation from the norm that must be treated or cured, and towards the view that Aspergers is a difference rather than a disability.

A Video About Asperger's Syndrome--

This video will help you understand about what it's like to be inside the head of an autistic person (I have Asperger's). I show you how I behave through the way I learn by using cartoon pictures I drew on paints. Ever since I posted my video it became a Featured Video, it won 2nd place in the 2007 East End Student Film Project, it was nominated for Best Commentary Video for the 2007 YouTube Awards, it was shown in a teachers convention, been in the newspaper 3 times, and also this video have received over thousands of comments most of them are strong positive comments from Parents, Teachers, People who has Autistic friends, and even people who are also Autistic themselves.



The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.

Meltdowns in Children on the Autism Spectrum: Crucial Strategies for Parents and Teachers

"Is there a difference between meltdowns and temper tantrums, and how can you tell the difference? Also, why do children with Aspergers have meltdowns, and what can parents do to prevent them?"

Aspergers (High-Functioning Autism, or Level 1 Autism) is a neurological condition. The brain is wired differently, making this disorder a lifelong condition. It affects communication, social interaction and sensory issues. Aspergers is often referred to as the "invisible syndrome" because of the internal struggles these kids have without outwardly demonstrating any real noticeable symptoms. Thus, difficultly assessing someone with Aspergers is even more impacted.

Kids with this disorder struggle with a problem and internalize their feelings until their emotions boil over, leading to a complete meltdown. These outbursts are not a typical temper tantrum. For children with Aspergers (and for their parents), these episodes are much worse.

Many Aspergers kids may appear under-receptive or over-receptive to sensory stimulation and therefore may be suspected of having vision or hearing problems. Therefore, it's not unusual for parents or teachers to recommend hearing and vision tests. Some kids may avoid gentle physical contact such as hugs, yet they react positively to rough-and-tumble games. Some Aspergers kids have a high pain tolerance, yet they may not like to walk barefoot in grass.

There are nine different types of temperaments in Aspergers children:

1. Distractible temperament predisposes the child to pay more attention to his or her surroundings than to the caregiver.
2. High intensity level temperament moves the child to yell, scream, or hit hard when feeling threatened.
3. Hyperactive temperament predisposes the child to respond with fine- or gross-motor activity.
4. Initial withdrawal temperament is found when children get clingy, shy, and unresponsive in new situations and around unfamiliar people.
5. Irregular temperament moves the child to escape the source of stress by needing to eat, drink, sleep, or use the bathroom at irregular times when he or she does not really have the need.
6. Low sensory threshold temperament is evident when the child complains about tight clothes and people staring and refuses to be touched by others.
7. Negative mood temperament is found when children appear lethargic, sad, and lack the energy to perform a task.
8. Negative persistent temperament is seen when the child seems stuck in his or her whining and complaining.
9. Poor adaptability temperament shows itself when children resist, shut down, and become passive-aggressive when asked to change activities.

Some meltdowns are worse than others, but all leave both parent and kid exhausted. Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it ends, both you and the Aspergers kid are totally exhausted. But… don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day, and sometimes into the next, the meltdown can return full force.

Meltdowns are overwhelming emotions and quite common in Aspergers kids. What causes them? It can be anything from a very minor incident to something more traumatic. How long do they last? It’s anyone’s guess. They last until the kid is either completely exhausted, or he gains control of his emotions, which is not easy for him to do.

If your kid suffers from Aspergers, expect her to experience both minor and major meltdowns over incidents that are part of daily life. She may have a major meltdown over a very small incident, or may experience a minor meltdown over something that is major. There is no way of telling how she is going to react about certain situations. However, there are some ways to help your kid learn to control his emotions.

Aspergers sufferers don’t really have the knowledge to decipher when their actions are inappropriate. When your kid is calm and relaxed, talk to her about her meltdowns if she is of an age where she can reason and learn to work with you. This will probably not be until the kid is seven or eight years old. Then, tell her that sometimes she does things that are not appropriate. Have her talk to you about a sign you can give her to let her know when this happens.

All you can do is be patient with your kid while she is having a meltdown, though they are emotionally exhausting for you as well as he. Never punish her for experiencing a meltdown. Overwhelming emotions are part of the Aspergers traits, but if you work with your kid, she will eventually learn to control them somewhat.

Aspergers kids don’t like surprises and some don’t like to be touched. Never rush to your Aspergers kid and give her a hug. If you want to hug her, tell her exactly what you are going to do. A surprise hug can send her into an even worse meltdown than she is already experiencing.

Aspergers kids like to be left alone to cope with emotions. If your kid says something like, “I just want to be left alone,” respect her wishes for at least a while. You can always go back in ten minutes and ask if you can help. Do not be hurt if she refuses.

Work with your Aspergers kid as she grows older to help her learn to cope with daily life. Remember, she sees the world much differently than we do and needs help deciphering exactly how we see the world. While working with her on this, she will give you clues as to how she sees the world and a firmer bond will be established.

It is much easier to prevent meltdowns than it is to manage them once they have erupted. Here are some tips for preventing meltdowns and some things you can say:

• Avoid boredom. Say, “You have been working for a long time. Let’s take a break and do something fun.”
• Change environments, thus removing the child from the source of the meltdown. Say, “Let’s go for a walk.”
• Choose your battles. Teach children how to make a request without a meltdown and then honor the request. Say, “Try asking for that toy nicely and I’ll get it for you.”
• Create a safe environment that children can explore without getting into trouble. Childproof your home or classroom so children can explore safely.
• Distract children by redirection to another activity when they begin to meltdown over something they should not do or cannot have. Say, “Let’s read a book together.”
• Do not ask children to do something when they must do what you ask. Do not ask, “Would you like to eat now?” Say, “It’s suppertime now.”
• Establish routines and traditions that add structure. For teachers, start class with a sharing time and opportunity for interaction.
• Give children control over little things whenever possible by giving choices. A little bit of power given to the child can stave off the big power struggles later. “Which do you want to do first, brush your teeth or put on your pajamas?”
• Increase your tolerance level. Are you available to meet the child’s reasonable needs? Evaluate how many times you say, “No.” Avoid fighting over minor things.
• Keep a sense of humor to divert the child’s attention and surprise the child out of the meltdown.
• Keep off-limit objects out of sight and therefore out of mind. In an art activity keep the scissors out of reach if children are not ready to use them safely.
• Make sure that children are well rested and fed in situations in which a meltdown is a likely possibility. Say, “Supper is almost ready, here’s a cracker for now.”
• Provide pre-academic, behavioral, and social challenges that are at the child’s developmental level so that the child does not become frustrated.
• Reward children for positive attention rather than negative attention. During situations when they are prone to meltdowns, catch them when they are being good and say such things as, “Nice job sharing with your friend.”
• Signal children before you reach the end of an activity so that they can get prepared for the transition. Say, “When the timer goes off 5 minutes from now it will be time to turn off the TV and go to bed.”
• When visiting new places or unfamiliar people explain to the child beforehand what to expect. Say, “Stay with your assigned buddy in the museum.”

  

There are a number of ways to handle a meltdown once it has started. Strategies include the following:

• When possible, hold the child who is out of control and is going to hurt himself or herself or someone else. Let the child know that you will let him or her go as soon as he or she calms down. Reassure the child that everything will be all right, and help the child calm down. Parents may need to hug their child who is crying, and say they will always love him or her no matter what, but that the behavior has to change. This reassurance can be comforting for a child who may be afraid because he or she lost control.
• If the child has escalated the meltdown to the point where you are not able to intervene in the ways described above, then you may need to direct the child to time-away (not to punish, but to remove the child from the current environment!). If you are in a public place, carry your child outside or to the car. Tell the child that you will go home unless he or she calms down. In school, warn the child up to three times that it is necessary to calm down and give a reminder of the rule. If the child refuses to comply, then place him or her in time-away for no more than 1 minute for each year of age (again, not to punish, but to remove the child from the current environment).
• Remain calm and do not argue with the child. Before you manage the child, you must manage your own behavior. Spanking or yelling at the child will make the meltdown worse.
• Talk with the child after the child has calmed down. When the child stops crying, talk about the frustration the child has experienced. Try to help solve the problem if possible. For the future, teach the child new skills to help avoid meltdowns such as how to ask appropriately for help and how to signal a parent or teacher that the he or she knows they need to go to “time away” to “stop, think, and make a plan.” Teach the child how to try a more successful way of interacting with a peer or sibling, how to express his or her feelings with words and recognize the feelings of others without hitting and screaming.
• Think before you act. Count to 10 and then think about the source of the child’s frustration, this child’s characteristic temperamental response to stress (e.g., hyperactivity, distractibility, moodiness), and the predictable steps in the escalation of the meltdown.
• Try to intervene before the child is out of control. Get down at the child’s eye level and say, “You are starting to get revved up, slow down.” Now you have several choices of intervention.
• Unlike a meltdown, you can ignore a tantrum if it is being thrown to get your attention. Once the child calms down, give the attention that is desired.
• You can place the child in time away. Time away is a quiet place where the child goes to calm down, think about what he or she needs to do, and, with your help, make a plan to change the behavior.
• You can positively distract the child by getting the child focused on something else that is an acceptable activity. For example, you might remove the unsafe item and replace with an age-appropriate toy.

 

Post-tantrum management:

• Teach the child that anger is a feeling that we all have and then teach her ways to express anger constructively.
• Never, under any circumstances, give-in to a temper tantrum. That response will only increase the number and frequency of the tantrums. Also, when an Asperger child has become accustomed to successfully manipulating parents with tantrums in the past -- but then doesn't get his way with today's tantrum -- it can often escalate into a meltdown. Now the parent has two distinctly different problems (that may look the same) to address.
• Never let meltdowns interfere with your otherwise positive relationship with the child.
• Explain to the child that there are better ways to get what he or she wants.
• Do not reward the child after a meltdown for calming down. Some children will learn that a meltdown is a good way to get a treat later.

My Aspergers Child: Preventing Meltdowns

The Adolescent Years

Adolescence is full of challenges for any teen. The change is fast, everywhere, and hard to keep up with: The body changes in response to increasing levels of sex hormones; the thinking process changes as the teen is able to think more broadly and in an abstract way; the social life changes as new people and peers come into scope. Yet the teen needs to deal with every single one of these changes, all at the same time! With their willingness to help, that’s where the moms and dads come in, who have "been there", with the life experience, maturity and resources. So, how can moms and dads help? Recognizing the complex and sometimes conflicting needs of an adolescent would be a good point to start.

Teens yearn to develop a unique and independent identity, separate from their moms and dads’. Yes, they love their moms and dads, but they don’t simply want to follow their footsteps. They challenge their moms and dads in any way they can. They disobey their rules; criticize their "old fashioned" values; they discard their suggestions. Experienced moms and dads know that sometimes they have to be very "political" approaching their adolescent teens, if they are going to get their point across. On the other hand, teens give a lot of credit to their peers. They yearn to belong to a peer group, which would define and support their identity. They may attempt to do things very much out of character just to gain the approval and acceptance of their peers. They tend to hide their weaknesses and exaggerate their strengths. Of course, what teens consider as "weakness" or "strength" may sometimes shock their moms and dads.

Teens with Aspergers bring their special flavor to the adolescence, essentially determined by the levels of three ingredients: interest, avoidance and insight.

Level of interest: Since all forms of Aspergers have an impact on social development by definition, most teens with moderate to severe Aspergers will show little or no interest in others. They may seem to be totally unaware of their peers’ presence or they may appear indifferent when peers try to interact. As Aspergers gets less severe, the level of interest in peers usually increases. For these teens, the quality of social interactions mostly depends on the levels of avoidance and insight.

Level of avoidance: In the social development of teens who show some interest in peer interactions, social anxiety and resultant avoidance play an important role. Some teens get very nervous just with the thought of approaching others and may choose to avoid it at all costs. Their avoidance may appear as if they are not interested in others. It is important to differentiate this since anxiety can be treated much more easily than genuine lack of interest.

Tip:

Most frequently, interaction with peers will create more anxiety than interaction with younger or older people: Younger teens are safer to approach since they would be more likely to accept the dominance of an adolescent with Aspergers and less likely to be critical. Older teens and adults are safer because they will be more likely to understand and tolerate. Moms and dads therefore commonly observe that their teens with Aspergers prefer to interact with younger teens or adults over their peers.

For teens with Aspergers who show interest in peers and do not avoid contact, the quality of social interactions will depend on the level of insight.

Level of insight: Yet some teens with Aspergers will not avoid interacting with others younger, older or similar age. Rather, they are eager to communicate, though, often in a clumsy, in-your-face way. The level of their insight into their social disability will then become the determining factor of their social success. If they are unaware of their shortcomings in gauging the social atmosphere and reading social cues, they may inadvertently come across as rude, insulting or boring. They may miss subtle criticism, sarcasm or tease. As they develop better insight, they become more motivated to learn which had not come naturally and intuitively. They also have a better chance to work through a sense of loss, common to all disabilities.

Coping with the Loss of Normalcy

Regardless of the individual developmental route, most teens with Aspergers start realizing that they are not quite like others at some point during their adolescence. A few factors seem to facilitate the process:

· A higher IQ

· A higher level insight into difficulties in social interaction

· A higher level of interest in others

Once the adolescent realizes that he has significant difficulties in conducting social relationships compared to his peers, he needs deal with this loss, just like dealing with another loss. Understanding the thoughts, feelings and behavior of an adolescent with Aspergers is the necessary first step in helping him out and being there for him. Considering this coping process in a few stages may make the caregivers’ job easier:

· Anger

· Denial

· Depression

· Acceptance

· Adaptation

Most commonly, the adolescent will not go through these stages one after another, but rather display a larger or smaller aspect of each at any given time. This is a painful process for not only the adolescent but for others who care for him as well. Moms and dads may find themselves compelled to forget the whole thing and act as if nothing is happening. Well, we are all tempted to avoid pain and denial is an excellent painkiller. The good news is, as much as the denial is contagious, the courage and strength, too, and seeing his moms and dads dealing with the pain calmly and matter-of-factly will encourage the adolescent talk about his anger and frustration. This will in turn help the adolescent get closer to the acceptance and adaptation:

· Don’t try to change the subject, unless your teen does so.

· Don’t try to minimize his difficulties, but also don’t let him exaggerate, providing gentle reality testing.

· Offer the option of counseling, since sometimes it is easier to talk to a stranger. However, try not to push the idea directly even if you feel that your teen clearly needs professional help.

· You don’t have to bring it up, but when he does, give them a good listening ear and be patient.

Tip:

Sometimes you have to be very political trying to sell an idea to a teenager. The mere fact that the idea is coming from his moms and dads may make him refuse it. Let the idea come from a family friend, teacher, or a neighbor he trusts. Give him time to think about it. He may come back to the suggestion when he feels he is ready.

Consider trying an antidepressant medication if he doesn’t seem to be able to move on. Look for the following common symptoms of clinical depression. If five or more of these are present week after week, put your foot down:

· Appearing sad for most of the time

· Becoming irritable and angry with the drop of a hat so that family members start walking on egg shells

· Complaining that he is tired all the time and wanting to take naps during the day

· Eating less or more than usual

· Losing interest in activities he usually enjoys

· Making remarks like he hates life, he hates you, nobody loves him, or wishing he was dead

· Not being able to fall asleep, waking up in the middle of the night and having difficulty falling back to sleep

· Putting himself down, saying he is stupid

· Withdrawing himself from the rest of the family, refusing to participate in group activities

· Blaming himself unfairly for anything that goes wrong

Most teens with Aspergers excel in one or two subjects. They tend to accumulate a lot of information on the subject and love to talk about it over and over. Unfortunately, after one point family members end up losing interest and start getting bored to death. Rather than avoiding the subject, try finding out new ways to engage the youngster in the subject. Structure the topic in a different way. Find a way to challenge him. Be creative and let sky be the limit! Your interest will make your teen feel better about himself, realizing his mastery on the subject will boost his self-esteem.

Many teens with Aspergers resolve their sense of loss by turning the issue upside down: Rather than clinging to depression and despair, they find their identity in Aspergers. They get in touch with other youth with Aspergers. They take on themselves educating their peers about Aspergers at school. They set up web sites, chat rooms and even write books about it. They gather support for a better understanding and treatment of Aspergers. Encouraging your teen, providing him means to this end and removing the obstacles in front of him may turn out to be the best antidepressant treatment ever. All this may seem remote and you may not know where to start. Consider the following tips:

· Attend support groups for moms and dads and make acquaintances

· If it doesn’t work right away, don’t get discouraged and keep trying, always letting your teen make the first move in showing interest

· Invite your new acquaintances to your house and encourage them to bring their teens

· Leave brochures, leaflets and other information about teen groups around to catch the attention of your teenager

· Set a good example. Get in touch with the organizations like the Aspergers Society of America or Asperger Syndrome Coalition of the U.S. and contact their local chapters

Acknowledging Sexuality

In contrast with their rather slow social development and maturation, teens with Aspergers develop physiologically and sexually at the same pace as their peers. As their sons and daughters with Aspergers grow older and display sexualized behavior, many patents find themselves worrying that

· their daughter will get pregnant or their son will impregnate someone else’s daughter

· their teen will be taken advantage of

· their teen will contract sexually transmitted diseases

· their teen will not have the opportunity of enjoying sexual relationships

· their teen’s behavior will be misunderstood

While some moms and dads get concerned that their teens show no interest in sexual matters, others have to deal with behaviors like:

· masturbating in public

· staring at others inappropriately

· stripping in public

· talking about inappropriate subjects

· touching others inappropriately

· touching private parts of own in public

Talking about sex, especially the sexuality of our teens makes us feel uncomfortable. Even though we all wish that our teens have safe and fulfilling sexual lives, we hope the issue just gets resolved by itself, or at least somebody else takes the responsibility of resolving it. We may find ourselves lost trying to imagine our teens, who have significant problems carrying a simple conversation, building relationships that may lead to healthy sexuality. We may find it comforting to believe that our teens don’t have sexual needs and feelings, and avoid bringing up the subject in any shape or form. We may feel uneasy about sex education, believing that ignorance will prevent sexual activity.

How can we make sure that our teens with Aspergers express sexuality in socially acceptable and legally permissible ways, avoiding harm to themselves and others?

The key is making your mind that you will address the issue, rather than avoid it. Set up a time with your teen to talk about sexuality, rather than making a few comments about it when the issue is hot, right after an incident, when everybody feels quite emotional about what just has happened. Ask direct questions about what your teen knows about sex. Ask about his desires and worries. Tell him what you think should be his first step. After inquiring and talking about the normal behavior, set realistic but firm limits about inappropriate behavior. Seeing your level of comfort around the issue, your teen will get the message that it is OK to have sexual feelings and it is OK to talk about them. Getting this message alone will bring the tension around sexuality a few notches down. If this approach fails, please do not be shy about asking for help. Other moms and dads with adolescent teens would be a good starting point. Your teen’s school may also be able to help. Finally, you may inquire about professional help, which should provide:

· an individualized sexuality assessment and

· sex education based on individual needs, while

· utilizing behavioral modification techniques to discourage inappropriate sexual behavior and promote appropriate sexual behavior.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome.