How Aspergers Students Learn: Strategies for Teachers

Do you, the teacher, have a clear understanding of what your Aspergers (high functioning autistic) student’s needs will be prior to the start of school (perhaps as dictated by the IEP), and does your student know what to do and say if he gets “stuck”?

If you know your Aspergers student to be a strong visual thinker and learner, ensure that any verbally communicated curriculum is reinforced with visuals. Some Aspergers kids cannot process visual and auditory input simultaneously without distraction – they are “mono-channel” so to speak (i.e., they can’t absorb what they are seeing and hearing at the same time and can attend to only one or the other). As many kids with Aspergers are so visual, this means there is potential for them to be distracted by everything in the room, so that they absorb only bits and pieces of the instruction.

In one instance, a young "Aspie’s" school team members were frustrated because they thought they were supporting her fully by assigning her a classroom aide. However, the aide was verbally reiterating the teacher's direction in such a way that their words overlapped. The Aspie student was receiving almost exclusively verbal instruction, out of sync, and in stereo! Now, consider her predicament in desiring to pay attention to the teacher, but knowing she must also attend to the aide. Layer on top of that the constant hustle and bustle of a typical elementary school classroom setting, and it was a recipe for disaster.

Many kids with Aspergers generally possess a number of strengths which teachers may build on. For example, these students:
  • best understand logical, concrete topics of discussion
  • desire to conform to rules and boundaries
  • retain information best when it is visual, sequential, and linear
  • have a strong knowledge base for individual topics of passionate interest
  • have a willingness to please and to keep trying

Your Aspergers student may well benefit from a classroom aide in order to support his comprehension. It will be best, though, if all the kids in classroom understand that the aide is accessible to them if they have questions or need guidance to reinforce the teacher's instruction. In this way, the aide's role is discreet (i.e., doesn’t look like the Aspie is receiving special treatment).

It will also be important that you embrace the concept of “building on the Aspergers student’s passions.” It is unrealistic to expect a teacher to center educational curriculum around one student's passions; however, wherever possible, it will help engage him if you can artfully introduce elements of the passion(s) into the lessons. Strategies for “linking passions to learning opportunities” is best applied by your student's classroom aide – or directly by you if no aide is assigned or available.

All Aspergers kids are eventually confronted with educational concepts that are vague and indiscernible for them. “Connecting lessons to passions” is intended to occur outside of the classroom setting and, ideally, before and after the confusing assignment. Your job is to “coach” your student on the sidelines before sending him out into the game (i.e., deconstruct the concept with which he is struggling by using his passion both before and after he's expected to learn and retain it). For example, you might suggest that the names given to parts of plants also relate to the hanging vines in a Mario Bros. computer game. Instead of asking that your student recite the textbook plant parts, request that he link the same information to the Mario Bros. plants. He will retain this information, and with a gentle reminder, he will “call up” the knowledge when it's required (e.g., at test time).

Some Aspergers kids take this to extremes and don't realize they are sidetracking a teacher's instruction with lengthy explanations of their special interest (which can prompt teachers to stereotype the interest). Kids who do this need clear, concise, and written rules provided to them about when and where it's okay to expound upon their passions.

Your student likely has a strong “associative link” when learning (i.e., he learns on the spot and in the moment while “doing” whatever it is, and will forever retain and “link” that experience with the moment). Many kids with Aspergers think and learn this way. It will be important, then, to understand your student's struggles if you wish to place emphasis on “pull out” programs or classes in which your student works one-on-one with an adult with the expectation that he process, retain, and apply what was just learned to the classroom situation. The two rarely mesh with success because of the strong associative link.

Your student will be poised for success if he can learn by doing in the moment and through incorporation of as many visuals as possible to reinforce it. In so doing, a visual “imprint” is recorded in his memory that, with gentle prompting, he can call-up and replay. You may then incrementally build on such experiences by relating them to something novel. For example, you might suggest to your student, “Remember when we made homemade apple sauce?” (Give him process time to replay the event in his mind.) Then continue, “The way a factory processes peanut butter is similar because ________.”

You may be surprised at the quality of detail with which your Aspergers student is able to relay information. He may very well become excited about taking a fun learning experience and applying it to something new and different.

==> Teaching Students with Aspergers and HFA


Aspergers Students: Causes of School-Related Anxiety

It's common for Aspergers (high functioning autistic) children of all ages to experience school anxiety and school-related stress. This is often most apparent at the end of summer when school is about to start again, but it can occur year-round. Social, academic and scheduling factors play a major role, as do hidden environmental stressors.

CLICK HERE for the full article...


Avoiding Negative Reinforcement in the Classroom: Tips for Teachers with Aspergers Students

Negative reinforcement requires the student to work for the removal of an in-place, unpleasant consequence. The student's goal is to get rid of something that is unpleasant rather than to earn something that is desirable. In a negative reinforcement model, instead of working to earn a positive consequence, the student works to distance himself from an aversive consequence.

Negative reinforcement is often used in the classroom to manage problem behaviors in Aspergers (high-functioning autistic) children. Educators inadvertently pay attention to a student who may not be complying and withdraw their attention contingent on the student's compliance. Surprisingly, this strengthens rather than weakens the noncompliant behavior. The next time a similar situation occurs, the student again will not comply until confronted with the aversive consequence (i.e. the teacher's attention). Negative reinforcement is often seductive and coercive for educators. It works in the short run, but in the long run, is likely to strengthen rather than weaken the undesirable behavior.

Behaviors that in-and-of themselves may not be negative become negative reinforcers when paired with certain events. For example, a teacher approaching a student who is not working quickly becomes a negative reinforcer, even though the action itself, the teacher walking up to the student, does not have a negative connotation. Researchers found that negative reinforcement was rated by educators as the most frequently used classroom intervention. Kids with Aspergers often experience negative reinforcement because of their temperament, which makes it difficult for them to complete tasks – their consequent learning history reinforces them for beginning, but rarely for finishing.

A number of simple, effective ways exist to deal with this problem. If you, the teacher, are using negative reinforcement, pay attention to the student until the assignment is completed. Although this too is negative reinforcement, it teaches the student that the only way to get rid of the aversive consequence (i.e., your attention) is not just to start – but to complete the task at hand. As an example, you may move the student's desk next to your desk until that particular piece of work is completed.

A second alternative involves the use of differential attention or ignoring. The term differential attention applies when “ignoring” is used as the negative consequence for exhibiting the undesirable behavior and “attention” is used as a positive consequence for exhibiting the competing desirable behavior. This is an active process in which the teacher ignores the student engaged in an ‘off-task’ activity, but pays attention immediately when the student begins working. Many educators avoid interaction with the student when she is ‘on-task’ for fear of interrupting the student's train of thought. It is important, however, to reinforce the student when working so that a pattern of working to earn positive reinforcement rather than working to avoid negative reinforcement is developed.

Secondary school educators at times complain that if they ignore the Aspergers student during an hour-long class, they never have the opportunity to pay positive attention as the student may never exhibit positive behavior. Waiting, however, even if one has to wait until the next day, is more effective in the long run than paying attention to ‘off-task’ behavior.

Educators need to make a distinction between ‘off-task’ behavior that ‘disrupts’ and ‘off-task’ behavior that ‘does not disrupt’. Differential attention works effectively for the latter. However, when a student is ‘off-task’ and disturbing his neighbor, you may find that being a negative reinforcer holds an advantage in stemming the tide of an ‘off-task’ behavior that involves other children as well. Differential attention alone has been demonstrated to be ineffective in maintaining high rates of ‘on-task’ behavior and work productivity for children with Aspergers. In part, it is suggested that many factors other than teacher attention maintain and influence student behavior.

Differential attention is a powerful intervention when used appropriately. Once the strategy of ignoring inappropriate behavior is employed, it must be continued despite escalation. If not, the teacher runs the risk of intermittently reinforcing the negative behavior, thereby strengthening its occurrence. For example, if you decide to use differential attention for a student's out-of-seat behavior, but become sufficiently frustrated after the student is out of his seat for 10 minutes and respond by directing attention to the student, the behavior will be reinforced rather than extinguished. The 10 minutes of ignoring will quickly be lost in the one incident of negative attention. If the teacher shouts, "You need to down!" …the student has received the desired attention by persisting in a negative behavior.

Researchers evaluated rules, praise, and ignoring for inappropriate behavior in two Aspergers kids in a typical second-grade classroom and in one Aspergers student in a kindergarten class. The results indicated that in the absence of praise, rules and ignoring were ineffective. Inappropriate behavior decreased only after praise was added. Others have demonstrated the importance of praise in a general education classroom. Specifically, whenever teacher approval was withdrawn, disruptive behaviors increased.

Kids with Aspergers perform as well as typical kids with a continuous schedule of reinforcement, but perform significantly worse with a partial schedule of reinforcement (e.g. reinforcement is provided only sometimes), which is typically found in most classrooms. Praise is important for the development of other attributes in kids (e.g., self-esteem, school attitude, motivation toward academics, etc). In addition, the opposite is also true: A large amount of punishment can negatively affect emotional development and self-esteem.

P.S. Parents are encouraged to copy, paste and print the information above and share it with their Aspergers child's teacher(s).


•    Anonymous said... Our special Ed teacher really helped son interact in group discussions. The kids were use to ignoring my son but taught them to see his thoughts as valid while teaching him how properly give and take. Now he can join without being shutout.
•    Anonymous said... I would have loved to show this to my son's 3rd grade teacher! That lady was a piece of work!
•    Anonymous said... I have a child with that is an aspie. He is now 18 and an amazing young man. I never used negative reinforcement. They are so emotional and so fragile. I totally disagree with negative reinforcement. It is unnecessary. They want acceptment. They don't think like "normal" people. When they act out they need a hug and to be explained to that what they did was wrong. They need people and parents that understand where they are and to be ready for uncommon circumstances. They are special and need to be treated as such.

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Aggressiveness in Aspergers Children and Teens

"My son will be 11 in September. There are so many issues, but the biggest concern now is the aggression associated with his meltdowns. The aggression is getting worse, both physical and verbal. He uses foul language, hits, kicks, spits and threatens to kill me. I am desperate for a solution of some kind. I don't know what I should do when these meltdowns occur. They start the minute I pick him up from school. He does not have this problem at school. Since school started back last week he has had a major meltdown every day. I know that school (he's at a new school this year) is a major stressor. He's completely uncooperative with homework and as I said above, the aggression associated w/ these tantrums is escalating. I am desperate for help."

Click here for my response...

The Complete Guide to Teaching Students with Aspergers and High-Functioning Autism

Aspergers is a condition on the “autism spectrum” that generally encompasses high functioning children with autistic tendencies.

A child with Aspergers (high-functioning autism) can have difficulty in school because – since he fits in so well – many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive. When teaching Aspergers students, a teacher should be aware of their special needs and accommodate both her classroom and teaching strategy to support the students’ special needs.

Are you setting-up your Aspergers student for success? 

Use the following checklist to see where your areas of strengths and weaknesses are:
  1. Are your activities engaging and motivating for the Aspergers student?
  2. Are your objectives, routines and rules clearly understood by him or her?
  3. Are your rules and routines posted clearly and stated positively?
  4. Do you always demonstrate respect for the student and value his contributions?
  5. Do you ensure you have her attention before starting?
  6. Do you give instructions and directions at the child’s level of need?
  7. Do you have a variety of rewards and consequences that are well known by the Aspergers student?
  8. Do you have smooth transitions from one subject to another and when students return from recess or lunch?
  9. Do you pause when he/she interrupts?
  10. Do you promote self-esteem and confidence?
  11. Do you remember to have fun with her/him and provide humor when the opportunity presents itself?
  12. Have you considered the child’s learning style?
  13. Is your Aspergers student able to cope with assigned tasks?

If you can answer ‘yes’ to these questions, your teaching plan will be very successful with the Aspergers student. If you answered ‘no’ to the items on this list, look toward improving that specific area.

Teaching strategies specific to the Aspergers condition are essential for any teacher with an Aspergers student. The “Aspie” has difficulty navigating social situations, and as a result, is often teased and used as a scapegoat in the classroom. In addition, he or she often has "odd" behaviors (e.g., clumsiness, being obsessive about a specific subject, insisting on routine, experiencing meltdowns, etc.). In spite of these challenges, there are many things that teachers can do with instructional practices, classroom accommodations, and behavioral interventions to promote success for the student with Aspergers.

Aspergers students exhibit significant social communicative difficulties, as well as other defining characteristics, which may severely impact their ability to function successfully in the school setting. But, when given appropriate support strategies, through direct teaching and various accommodations and/or modifications, the “Aspie” can learn to be successful in her unpredictable, sensory-overloading, socially-interactive world. It is critical that a team approach be utilized in addressing the unique and challenging needs of a child with Aspergers -- with teachers being vital members of this team!

Having a student with Aspergers in your class gives you the chance to show your students that people who have challenges can also have strengths ...that in looking past someone's quirks, you can find someone worth knowing ...that life is richer if you don't solely interact with children who are like clones of yourself.

Teaching the Aspergers student to expect change, to be an active problem-solver, to gain skills in flexible thinking, and to manage anxiety builds a foundation for her/his future success in an unpredictable and uncertain world.

In The Complete Guide to Teaching Students with Aspergers and High-Functioning Autism, teachers will: (a) gain a better understanding of the disorder, (b) gain insight into how the child acts in an academic setting, (c) learn effective educational interventions for the child, (d) learn the warning signs that the “Aspie” is being overcome with frustration and about to experience a "meltdown", and (e) learn to treat the child in a more holistic manner.


Tips for Reducing Stress Related to Parenting Kids with HFA and AS

"My (high functioning autistic) child is one of the most wonderful blessings of my life – yet at times, stress may cause me to wonder if he is at the root of my most intense times of irritability and anxiety. I don't like thinking like this. Any tips on how I can reduce my stress while at the same time, care for my son's special needs.?"

Click here for the answer...


The School Environment: Issues for Aspergers Students

For the Aspergers (high functioning autistic) student, schools are full of environmental stimuli that can (a) create a state of anxiety and (b) wreak havoc on his or her sensory sensitivities. Many Aspergers kids are already anxious about wanting to follow the rules, live up to the teacher’s expectations, and get through each day without any major problems. 

There have been plenty of studies out there conducted by educational psychologists that show that school settings affect not only those with Aspergers, but other students as well. But keep in mind that the "Aspie" student must also grapple with having her senses assaulted throughout the day. In some instances, if she is not yet a self-advocate, or if she is unaware of her own sensitivities, she may be unable to pinpoint exactly what triggers her anxiety and subsequent loss of control.

Most Aspergers children are keenly aware of the social, educational, and environmental expectation that they “fit in” with the crowd. To compensate, they “keep it together” all day long the best they can. Once they return home, many Aspies breathe a sigh of relief, allow their pent-up stress to explode, and meltdown in the safety of the home environment where they feel most comfortable to let down their defenses. This creates a confusing dilemma for educators who report to moms and dads that their youngster “seems fine” during the day. It also creates a frustrating set of circumstances for moms and dads who may internalize their own self-doubts about “something they must be doing wrong” at home. But it is no one's fault! The Aspergers youngster is simply reacting to the stress-relief that comes with dropping the faƧade he's been wearing during seven hours of school time.

Here are a few suggestions that parents may want to share with their Aspie’s educators to minimize the stress-inducing “environmental stimuli” that accompanies typical school settings:

1. Partitions around learning stations and computer centers are great for creating visual blocks on both sides of a student and can also cut down some noise.

2. Classroom walls can be over-stimulating and “busy” with decoration. If visuals cannot be streamlined, at least keep them somewhat static so the Aspergers youngster can become accustomed to them.

3. Helping the Aspergers student maintain some element of ‘structure’ during relatively ‘unstructured’ times can be quite helpful. For example, an alternative to being swallowed up by the lunchroom crowd would be to establish “lunch-time discussion” tables in a quieter corner of the cafeteria. Also, some schools assign seating on the bus, which helps alleviate some anxiety experienced by the Aspie when seating is a daily “free for all” and he must compete for seats with older kids.

4. Consider felt pads under the feet of all classroom chairs as buffers against the constant scraping noise they make.

5. Ensure that all children have advance knowledge of schedule changes outside of the routine, such as early dismissal or assemblies.

6. Focus on natural lighting instead of fluorescent lights when possible, using fewer overhead lights or adding alternate lighting such as floor lamps.

7. Many Aspergers kids thrive during those portions of the school day that are structured by routine, but those same children may flounder and feel lost during the many unstructured school events that occur throughout the day (e.g., gym class, hallway socializing between classes, lunchtime, recess, riding the bus to and from school, school assemblies, etc.). As a result, your youngster may be best poised to weather the awkwardness of unstructured school situations if he can volunteer for, or be assigned, a responsibility or role during the activity. For example, many Aspergers children are not as physically adept as they want to be. Playing on a team in gym class can be confusing and uncomfortable, but this can be tempered if he is also in charge of keeping score.

8. Give the Aspergers youngster advance notice of fire-drill times so that he may brace himself for the noise. If he cannot tolerate it, small foam earplugs may help, or wearing iPod or MP3-player headphones may diffuse the noise.

9. Hallways can become extremely noisy (e.g., the echo of footsteps, load conversation, etc.). Wherever possible, keep classroom doors shut.

10. Numbering classroom rules as written reminders for the Aspergers youngster is a good idea, but publicly displaying them on a desktop is stigmatizing. Tape them inside a youngster's notebook or binder and refer to them discreetly.

11. Ringing classroom phones can be startling. Switch to a flashing light instead of a ring to indicate a call.

12. The volume of the PA system in the room may be too loud. If it's possible to adjust the volume, this can help. Same for the change-of-class bell.

For more suggestions on how you, my child's teacher, can make the school-setting more tolerable, please visit MyAspergersChild.com.

Implementing the ideas above may significantly help the Aspergers youngster to “hold it together” in a more environment-friendly school. These methods shouldn’t be seen as “pampering” the Aspie. It just makes sense to poise him for success rather than set him up for failure – especially in light of the fact that he spends the majority of his day at school.


My Aspergers Teen

Although Aspergers (high functioning autism) is at the milder end of the autism spectrum, the challenges parents face when disciplining a "special needs" teenager are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels -- unless the parents' disciplinary techniques are tailored to their child's special needs.

Click here for My Aspergers Teen eBook


Autism Spectrum Disorders: Everything Parents Need To Know

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 kids ages 3-10, a disorder that causes disruption in families and unfulfilled lives for many kids. In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 kids 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 Aspergers. 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.

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 kids 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 youngster evaluated by a professional specializing in these disorders.

Moms and dads are usually the first to notice unusual behaviors in their youngster. In some cases, the baby seemed “different” from birth, unresponsive to individuals or focusing intently on one item for long periods of time. The first signs of an ASD can also appear in kids 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 moms and dads 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 ASD) range from a severe form (called autistic disorder) to a milder form (called Aspergers). If a youngster 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 ASD are Rett syndrome and childhood disintegrative disorder. This brochure will focus on classic autism, PDD-NOS, and Aspergers, with brief descriptions of Rett syndrome and childhood disintegrative disorder below.


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 ASD 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 kids 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 ASD was 3.4 per 1,000 for kids 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) kids 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 kids), but higher than the rates for cerebral palsy (2.8 per 1,000 kids), hearing loss (1.1 per 1,000 kids), and vision impairment (0.9 per 1,000 kids).3 The CDC notes that these studies do not provide a national estimate.

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 moms and dads 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 Youngster 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 kids much sooner, and improving the quality of life these kids experience.

Childhood Disintegrative Disorder—

Very few kids who have an ASD diagnosis meet the criteria for childhood disintegrative disorder (CDD). An estimate based on four surveys of ASD found fewer than two kids 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 youngster 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 ASD are more common in the pediatric population than are some better known disorders such as diabetes, spinal bifida, or Down syndrome.2 A recent study of a U.S. metropolitan area estimated that 3.4 of every 1,000 kids 3-10 years old had autism.3 The earlier the disorder is diagnosed, the sooner the youngster can be helped through treatment interventions. Pediatricians, family physicians, daycare providers, educators, and moms and dads may initially dismiss signs of ASD, optimistically thinking the youngster is just a little slow and will “catch up.”

All kids 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 youngster differently. For instance, a youngster may have little trouble learning to read but exhibit extremely poor social interaction. Each youngster will display communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASD.

Kids with ASD do not follow the typical patterns of youngster development. In some kids, hints of future problems may be apparent from birth. In most cases, the problems in communication and social skills become more noticeable as the youngster lags further behind other kids the same age. Some other kids start off well enough. Oftentimes between 12 and 36 months old, the differences in the way they react to individuals and other unusual behaviors become apparent. Some moms and dads report the change as being sudden, and that their kids start to reject individuals, 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 youngster with autism and other kids 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.4

Possible Indicators of Autism Spectrum Disorders—

• Does not babble, point, or make meaningful gestures by 1 year of age
• Does not combine two words by 2 years
• Does not respond to name
• Does not speak one word by 16 months
• Loses language or social skills

Some Other Indicators—

• At times seems to be hearing impaired
• Doesn't seem to know how to play with toys
• Doesn't smile
• Excessively lines up toys or other objects
• Is attached to one particular toy or object
• Poor eye contact

Social Symptoms—

From the start, typically developing infants are social beings. Early in life, they gaze at individuals, turn toward voices, grasp a finger, and even smile.

In contrast, most kids 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 individuals, 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 moms and dads' displays of anger or affection in a typical way. Research has suggested that although kids with ASD are attached to their moms and dads, their expression of this attachment is unusual and difficult to “read.” To moms and dads, it may seem as if their youngster is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their youngster may feel crushed by this lack of the expected and typical attachment behavior.

Kids 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 youngster 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, individuals with ASD have difficulty seeing things from another person's perspective. Most 5-year-olds understand that other individuals have different information, feelings, and goals than they have. An individual 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 individuals 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 kids 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 kids 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 kids 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 kids parrot what they hear, a condition called echolalia. Although many kids with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.

Some kids 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 kids 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 kids 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, individuals 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 kids do whatever they can to get through to others. As individuals 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 kids with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other kids. These behaviors might be extreme and highly apparent or more subtle. Some kids and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.

As kids, 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 youngster may be tremendously upset. ASD kids 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 youngster 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—

• 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 individuals with ASD also have tuberous sclerosis.8

• Sensory problems. When kid’s perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the youngster's experiences of the world can be confusing. Many ASD kids are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some kids 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 kids to cover their ears and scream. In ASD, the brain seems unable to balance the senses appropriately. Some ASD kids are oblivious to extreme cold or pain. An ASD youngster 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 youngster scream with alarm.

• Seizures. One in four kids 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.

• Mental retardation. Many kids 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 youngster with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.

• 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 individuals with ASD. It is important to have a youngster with ASD checked for Fragile X, especially if the moms and dads are considering having another youngster. For an unknown reason, if a youngster with ASD also has Fragile X, there is a one-in-two chance that boys born to the same moms and dads will have the syndrome. 6 Other members of the family who may be contemplating having a youngster 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 kids.

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 kids, 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 kids have a 50-50 chance of inheriting the mutated gene. The odds noted here apply to each youngster the moms and dads have 7 in terms of prevalence, the latest statistics are consistent in showing that 5% of individuals with autism are affected by fragile X and 10% to 15% of those with fragile X show autistic traits.

The Diagnosis of Autism Spectrum Disorders—

Although there are many concerns about labeling a young youngster 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 kids with ASD.2

In evaluating a youngster, 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 youngster'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 youngster” check-ups; the second stage entails a comprehensive evaluation by a multidisciplinary team.9


A “well youngster” check-up should include a developmental screening test. If your youngster's pediatrician does not routinely check your youngster with such a test, ask that it be done. Your own observations and concerns about your youngster's development will be essential in helping to screen your youngster.9 Reviewing family videotapes, photos, and baby albums can help moms and dads remember when each behavior was first noticed and when the youngster reached certain developmental milestones.

Several screening instruments have been developed to quickly gather information about a youngster's social and communicative development within medical settings. Among them are the Checklist of Autism in Toddlers (CHAT),10 the modified Checklist for Autism in Toddlers (M-CHAT),11 the Screening Tool for Autism in Two-Year-Olds (STAT),12 and the Social Communication Questionnaire (SCQ)13 (for kids 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 kids 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 kids with mild ASD, such as those with high-functioning autism or Aspergers.

During the last few years, screening instruments have been devised to screen for Aspergers and higher functioning autism. The Autism Spectrum Screening Questionnaire (ASSQ),14 the Australian Scale for Aspergers Syndrome,15 and the most recent, the Childhood Aspergers Test (CAST),16 are some of the instruments that are reliable for identification of school-age kids with Aspergers or higher functioning autism. These tools concentrate on social and behavioral impairments in kids without significant language delay.

If, following the screening process or during a routine “well youngster” check-up, your youngster'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 kids with ASD.

Because ASD 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.9 In addition, measures developed specifically for diagnosing autism are often used. These include the Autism Diagnosis Interview-Revised (ADI-R)17 and the Autism Diagnostic Observation Schedule (ADOS-G).18 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 youngster'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 kids with ASD.

Still another instrument often used by professionals is the Childhood Autism Rating Scale (CARS).19 It aids in evaluating the youngster's body movements, adaptation to change, listening response, verbal communication, and relationship to individuals. It is suitable for use with kids over 2 years of age. The examiner observes the youngster and also obtains relevant information from the moms and dads. The youngster's behavior is rated on a scale based on deviation from the typical behavior of kids of the same age.

Two other tests that should be used to assess any youngster with a developmental delay are a formal audiologic hearing evaluation and a lead screening. Although some hearing loss can co-occur with ASD, some kids with ASD may be incorrectly thought to have such a loss. In addition, if the youngster has suffered from an ear infection, transient hearing loss can occur. Lead screening is essential for kids who remain for a long period of time in the oral-motor stage in which they put any and everything into their mouths. Kids with an autistic disorder usually have elevated blood lead levels.9

Customarily, an expert diagnostic team has the responsibility of thoroughly evaluating the youngster, assessing the youngster's unique strengths and weaknesses, and determining a formal diagnosis. The team will then meet with the moms and dads to explain the results of the evaluation.

Although moms and dads may have been aware that something was not “quite right” with their youngster, 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 moms and dads will have to ask questions and get recommendations on what further steps they should take for their youngster. 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 moms and dads have further questions.

Available Aids—

When your youngster has been evaluated and diagnosed with an ASD, you may feel inadequate to help your youngster 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 youngster 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 youngster has been given so that his or her eligibility for special programs will be documented. Learn everything you can about special programs for your youngster; the more you know, the more effectively you can advocate.

For every youngster 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 kids with diagnosed learning deficits. Usually kids 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 youngster in a special education program. The list of skills is known as the youngster's Individualized Education Program (IEP). The IEP is an agreement between the school and the family on the youngster's goals. When your youngster's IEP is developed, you will be asked to attend the meeting. There will be several individuals 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 youngster care provider, or a supportive close friend who knows your youngster well). Moms and dads play an important part in creating the program, as they know their youngster and his needs best. Once your youngster's IEP is developed, a meeting is scheduled once a year to review your youngster's progress and to make any alterations to reflect his or her changing needs.

If your youngster 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 youngster's home or a place familiar to the youngster. 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 youngster, but will also describe services for moms and dads to help them in daily activities with their youngster and for siblings to help them adjust to having a brother or sister with ASD.

Treatment Options—

There is no single best treatment package for all kids 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 youngster'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 youngster's treatment based on your youngster's needs. You may want to visit public schools in your area to see the type of program they offer to special needs kids.

Guidelines used by the Autism Society of America include the following questions moms and dads can ask about potential treatments:

• Are there assessment procedures specified?
• Has the treatment been validated scientifically?
• How will failure of the treatment affect my youngster and family?
• How will the treatment be integrated into my youngster's current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and social skills are ignored.
• Will the treatment result in harm to my youngster?

The National Institute of Mental Health suggests a list of questions moms and dads can ask when planning for their youngster:

• Are there predictable daily schedules and routines?
• Do staff members have training and experience in working with kids and adolescents with autism?
• How are activities planned and organized?
• How is progress measured? Will my youngster's behavior be closely observed and recorded?
• How many kids have gone on to placement in a regular school and how have they performed?
• How much individual attention will my youngster receive?
• How successful has the program been for other kids?
• Is the environment designed to minimize distractions?
• What is the cost, time commitment, and location of the program?
• Will my youngster be given tasks and rewards that are personally motivating?
• Will the program prepare me to continue the therapy at home?

Among the many methods available for treatment and education of individuals 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”20 The basic research done by Ivar Lovaas and his colleagues at the University of California, Los Angeles, calling for an intensive, one-on-one youngster-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.21, 22

An effective treatment program will build on the youngster's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the youngster's attention in highly structured activities, and provide regular reinforcement of behavior. Parental involvement has emerged as a major factor in treatment success. Moms and dads work with educators and therapists to identify the behaviors to be changed and the skills to be taught. Recognizing that moms and dads are the youngster's earliest educators, more programs are beginning to train moms and dads to continue the therapy at home.

As soon as a youngster's disability has been identified, instruction should begin. Effective programs will teach early communication and social interaction skills. In kids younger than 3 years, appropriate interventions usually take place in the home or a youngster 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; kids 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 kids learn by doing. Working with the kids are students, behavioral therapists, and moms and dads who have received extensive training. In teaching the kids, positive reinforcement is used.23

Kids older than 3 years usually have school-based, individualized, special education. The youngster may be in a segregated class with other autistic kids or in an integrated class with kids 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 kids learn social skills and functional communication. In these programs, educators often involve the moms and dads, giving useful advice in how to help their youngster use the skills or behaviors learned at school when they are at home.24

In elementary school, the youngster 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 youngster's needs. Many schools today have an inclusion program in which the youngster 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 kids 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.25

All through your youngster's school years, you will want to be an active participant in his or her education program. Collaboration between moms and dads and educators is essential in evaluating your youngster's progress.

The Teenage Years—

The teenage years are a time of stress and confusion; and it is no less so for teenagers with autism. Like all kids, 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 adolescents express their newfound tension and confusion.

Adolescence is also a time when kids become more socially sensitive. At the age that most teenagers are concerned with acne, popularity, grades, and dates, teenagers 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 kids, many moms and dads continually seek new treatments. Some treatments are developed by reputable therapists or by moms and dads of a youngster with ASD. Although an unproven treatment may help one youngster, 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 kids 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 moms and dads decide to try for a given period of time a special diet, they should be sure that the youngster's nutritional status is measured carefully.

A diet that some moms and dads have found was helpful to their autistic youngster 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 moms and dads feel is beneficial for an autistic youngster is Vitamin B6, taken with magnesium (which makes the vitamin effective). The result of research studies is mixed; some kids 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.26

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 kids, but the doctor prescribes the medications if he or she feels they are appropriate for your youngster. Further research needs to be done to ensure not only the efficacy but the safety of psychotropic agents used in the treatment of kids and adolescents.

• 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 individuals, 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 kids 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 patients of all ages 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.

• Olanzapine (Zyprexa) and other antipsychotic medications are used "off-label" for the treatment of aggression and other serious behavioral disturbances in kids, including kids 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 kids with autism. Fluoxetine (Prozac) and sertraline (Zoloft) are approved by the FDA for kids age 7 and older with obsessive-compulsive disorder. Fluoxetine is also approved for kids age 8 and older for the treatment of depression.

• 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 kids and adolescents ages 5 to 16. The approval is the first for the use of a drug to treat behaviors associated with autism in kids. These behaviors are included under the general heading of irritability, and include aggression, deliberate self-injury and temper tantrums.

A youngster with ASD may not respond in the same way to medications as typically developing kids. It is important that moms and dads work with a doctor who has experience with kids with autism. A youngster 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 youngster responds to the medication. It will be helpful to read the “patient insert” that comes with your youngster's medication. Some individuals keep the patient inserts in a small notebook to be used as a reference. This is most useful when several medications are prescribed.

• 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 kids with autism. These medications may decrease impulsivity and hyperactivity in some kids, especially those higher functioning kids.

• 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.27 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“atypica” antipsychotics are being conducted on kids with autism. The first such study, conducted by the NIMH-supported Research Units on Pediatric Psychopharmacology (RUPP) Autism Network, was on risperidone (Risperdal®).28 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 kids 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.

• 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 kids 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.

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 kids with autism has not been proven. Since individuals may respond differently to different medications, your youngster's unique history and behavior will help your doctor decide which medication might be most beneficial.

Adults with an Autism Spectrum Disorder—

Some grown-ups with ASD, especially those with high-functioning autism or with Aspergers, 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 youngster, as well as the programs and facilities that can provide support services to achieve these goals. Long before your youngster finishes school, you will want to search for the best programs and facilities for your young adult. If you know other moms and dads 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 youngster 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 youngster is eligible to receive as an adult.

Living Arrangements for the Adult with an Autism Spectrum Disorder—

• 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.

• Independent living. Some grown-ups 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 youngster 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.

• Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.

• 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.

Research into Causes and Treatment of Autism Spectrum Disorders—

Research into the causes, the diagnosis, and the treatment of ASD 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 youngster with ASD develop to his or her greatest potential.


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 kids 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.

Research on the Biologic Basis of Autism Spectrum Disorders—

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 ASD 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.31


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