Problems with Proper Diagnosis: Is it Adjustment Disorder or High-Functioning Autism?

"We have a 2½ year old son with Alpha-1 Antitrypsin Deficiency and some other undiagnosed problems. When we did the routine screening at his Pedi’s office, the Pedi said he showed possible Autism and wanted us to see a behavioral specialist. When we went to see her, my sister and I showed her a couple of videos of him “blacking out” during one of his meltdowns and hurting himself.   We explained to her his sensory and tactile issues and other things we had noticed.  This was the winter of 2015 when he was just 1½.  She said “I don’t think he has Autism because he makes eye contact occasionally and has good interaction with us.  I think he is pretending and acting this way because he does not feel good and he knows if he does this he can be left alone.”  With that we left and drove the 1 hour 45 min back home.  Now he still have the same behavior and he is not only hurting himself (he just punched himself in the lip) but he is becoming aggressive towards others.  The babysitter and I say he gets an “I’m going to kill you look.”  My mom says his eyes go glassy. He is gluten and casein free because a biopsy revealed those enzymes are there but don’t work fully/properly. 

Becoming concerned I emailed the behaviorist and she emailed me back saying my son needed to see a psychologist, in which a immediately made an appointment.   Again the psychologist could not put a true diagnosis on him because he said he could not find anything about Alpha-1 and behavior problems so he didn’t know if it was related to that.  I asked him if my son could possibly have Asperger's, and he said that he could not diagnose him with that because that diagnosis has been taken out of the medical books. He ended up diagnosing him with Adjustment Disorder- nonspecific, and said he was developmentally and environmentally delayed.   I don’t know what to do and no one (even the sitter) understands him and just want to spank him and punish him all day long.  I know there are times he needs to be put in time out but my husband and I are getting frustrated."




Answer:

Re: We have a 2½ year old son with Alpha-1 Antitrypsin Deficiency and some other undiagnosed problems.

This condition definitely has an impact on both behavior and mood (i.e., there is a correlation between A1AD and acting-out, but not necessarily a causal relationship).

Re: When we did the routine screening at his Pedi’s office, the Pedi said he showed possible Autism and wanted us to see a behavioral specialist. When we went to see her, my sister and I showed her a couple of videos of him “Blacking out” during one of his meltdowns and hurting himself.   We explained to her his sensory and tactile issues and other things we had noticed.  This was the summer of 2011 when he was just 1½.

It’s hard to diagnose any child with a developmental disorder at 2½. Based solely on what I’ve read throughout your email, it does sound like High-Functioning Autism (HFA).

Re: She said “I don’t think he has Autism because he makes eye contact occasionally and has good interaction with us.  I think he is pretending and acting this way because he does not feel good and he knows if he does this he can be left alone.”

This wouldn’t be inconsistent with HFA.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

Re: With that we left and drove the 1hour 45 min back home.  Now he still have the same behavior and he is not only hurting himself (he just punched himself in the lip 4/13/12) but he is becoming aggressive towards others.  The babysitter and I say he gets an “I’m going to kill you look.”  My mom says his eyes go glassy.

He acts this way because he is stressed, and he is attempting to relieve this stress through physically acting-out because he hasn’t learned to express feelings using words yet.

Re: He is gluten and casein free because a biopsy revealed those enzymes are there but don’t work fully/properly.  

Good!

Re: Becoming concerned I emailed the behaviorist and she emailed me back saying my son needed to see a psychologist, in which an immediately made an appointment.   Again the psychologist could not put a true diagnosis on him because he said he could not find anything about Alpha-1 and behavior problems so he didn’t know if it was related to that.

It’s true that there hasn’t been much research on the relationship between A1AD and behavior.

Re: I asked him if my son could possibly have Asperger’s and he said that he could diagnose him with that because that diagnosis is being taken out of the medical books.

It has not been taken out of medical books, it simply has a new name (i.e., “High-Functioning Autism,” which is the same thing as Aspergers).

Re: He ended up diagnosing him with Adjustment Disorder- nonspecific and said he was developmentally and environmentally delayed. 

Again, this wouldn’t be inconsistent with HFA. Unfortunately, you may have to wait until he is a bit older to get an accurate diagnosis. In the meantime, you can do your own detective work.

1. To start with, you'll want to narrow your focus to one particular behavior to analyze and change. Although it's tempting, don't just choose the thing that most annoys you. A better choice will be something that particularly puzzles you. For example:
  • Why can your son eat his lunch just fine some days, and balks on other days?
  • Why does he insist on punishment even when it upsets him?
  • Why does he get so wound up and wild?
  • Why is your son sweet and compliant sometimes, then resists to the point of tantrum over something inconsequential?

As long as you're going to be a detective, you might as well give yourself a good mystery. While you're stalking one behavior, you may need to let others slide, unless it's a matter of safety. Don't try to change everything all at once.

2. Next, keep a journal (or if it is a frequently occurring behavior, keep a chart) for noting every incidence of the targeted behavior. Include the time of day the behavior occurred, and what happened before, during, and after. Think of what might have happened directly before the behavior, and also earlier in the day. Think, too, of what happened directly after the behavior, and whether it offered your son any reward (even negative attention can be rewarding if the alternative is no attention at all). Ask yourself the following questions. Does the behavior tend to:

·  be more frequent during a certain time of day?
·  occur after a certain event?
·  occur during transitions?
·  occur in anticipation of something happening?
·  occur when routine is disrupted?
·  occur when something happens - or doesn't happen?
·  occur when things are very noisy or very busy?

Keep track over the course of a few weeks and look for patterns.

3. It may seem as though your son saves his worst behavior for public places, where it causes you the most embarrassment. But there may be a reason for that. Ask yourself the following question:
  • Does he have a hard time resisting touching and banging things like buttons or doors?
  • Does he have trouble in places where he needs to stay still and quiet (e.g., church)?
  • Does he resist places where children may be cruel (e.g., playground)?
  • Does he panic in places that are busy and noisy (e.g., the store)?
  • Does he shy away from places with strong smells or bright lights?
  • Is there something about any particular place that might be distressing?

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

Notice reactions to different environments and add these insights to your journal or chart.

4. You can stubbornly insist that your son is responsible for his own behavior, but you're liable to be waiting a long time for the behavior changes you want to see. While you may find some behaviors annoying, disruptive, or inappropriate, it may be filling a need for your son. And even if your son is genuinely unhappy about the negative consequences of his behavior, he may not understand it enough to control it.

In the end, it is far easier for YOU to change (e.g., your expectations, actions, reactions, responses, etc.) than for your son to change. You will need to do some detective work to determine the support your son needs to improve his behavior, and provide it. Ultimately, you can teach your son to do this for himself. But you have to lead the way.

5. Take the data from your journal or chart (e.g., patterns you've discovered, observations on environments, etc.) and see if you can figure out what's behind the behavior. For example:
  • Maybe he balks at lunchtime when he sees too many food items on the plate.
  • Maybe he begs for punishment because going to “time-out” feels safer than dealing with a challenging situation.
  • Maybe he explodes over something inconsequential because he's used up all his patience weathering frustrations earlier in the day.
  • Maybe he gets wound up because “being good” gets him no attention.

Once you have a working theory, make some changes in your son's environment to make it easier for him to behave. For example:
  • Give your son lots of attention when he's being good - and none at all for bad behavior (other than just a quick and emotionless timeout).
  • Instead of being happy that your son seems to be handling frustrating situations, provide support earlier in the day so that his patience will hold out longer.
  • Recognize situations your son feels challenged by - and offer an alternative between compliance and disobedience.

You may not always guess right the first time, and not every change you try will work. Effective parents will have a big bag of tricks they can keep digging into until they find the one that works that day, that hour, that minute. But analyzing behavior and strategizing solutions will help you feel more in control of your family, and your son will feel safer and more secure. This alone often cuts down on a lot of behavioral problems.



COMMENTS:

•    Anonymous said… A person with higher functioning autism can make eye contact and interest to some extent. That does not rule it out. My 13 year just got his diagnosis last year because of people saying stuff like that. Yes, he made eye contact with certain people under certain circumstances. Yes, he could answer questions about himself. Yes, he wanted friends, thought he had friends. Did he actually have friends? Nope. Can he have an actual back and forth conversation about something that is not video games? Nope. Would it ever occur to him to ask about what happens in someone's life while apart from him? Nope. It is a spectrum and no one can say that just because your son made eye contact or answered questions that he isn't on it.
•    Anonymous said… Absolutely Nicky Logan. My son's Aspergers (ASD his psychiatrist has relabelled) a late diagnosis. A lot of people including the medical practitioners misunderstand autism especially about eyecontact. People with Aspergers/ASD like my son gives eye con...
•    Anonymous said… Asperger has been consumed within the Autism Spectrum Disorder in the newest edition of the DSM. Asperger has not gone anywhere- they have simply reorganized that section. I think sometimes we spend too much time trying to settle on a particular diagnosis. Keep in mind, these diagnoses are really just a definition. Most kids don't fit neatly into any diagnostic box. I wonder if we should just treat what is in front of us and not worry so much about the label?
•    Anonymous said… Don't worry so much about the diagnosis as about getting the appropriate early interventions. He needs OT to address any sensory or regulation issues-muscle tone-motor skills, psychologist to work on identifying and expressing emotions-coping skills-social skills, and speech/language therapist to work with pragmatic/reciprocal communication. Structure his days to reduce anxiety. Read what you can on meltdowns and how to de-escalate. Engage in self care and find a solid treatment team. As a psychologist, I work with children that are on the spectrum frequently and it is so difficult to watch developmental Windows close because of lack of access to services. Don't give up!!!
•    Anonymous said… Hmmmm my son has aspergers diagnosed and we have alpha 1 in our family.....very interesting. They also believe there is a link between gut health and autism....that aside, i would keep persisting if you know there is something as a parent, there is something
•    Anonymous said… I had a similar issue, my son was not diagnosed until he was 11, because he made eye contact and was very advanced verbally. And a diagnosis WAS really important for us, we got him medication and the right therapy. He's a whole new kid. Many of his behaviors have almost disappeared. See if you can get Autism services without a diagnosis. ABA therapy is a wonderful tool for kids with Autism. Don't give up, if you know something is wrong. As his parent you know more about your child. Maybe get a second opinion from an Autism specialist.
•    Anonymous said… I would add to the advice given to find a daycare or sitter that has experience with children on the autism spectrum. Do not allow the sitter to spank him and punish him all day long. He needs people who are willing to learn what he needs and try to work with him rather than pigheadedly beating a round peg into a square hole.
•    Anonymous said… Make sure u have some1 very patient & understanding caring for him when ur not there! Im shocked they won't diagnosis aspergers as my son was diagnosed with this 4 years ago! Don't give up! There's lots of people u can turn to for help & advice x
•    Anonymous said… My grandson is still waiting to be properly diagnosed ,here in NEWZEALAND they are so slow he was first seen at 2 but still waiting for the correct diagnoses and he is 8 .I fully understand the glassy eye bit almost to the point of evil its very scary ,but theses type of children prefer to be alone and god help you if you interupt sounds like asperges to me with the high function autism but he will be great when hes older its just that I believe that these children live in a totally different worrl to us that cll ourselves normal .At times I wonder if its the child that is normal and we the adult dont function right .Hang in there.
•    Anonymous said… My son is asd and makes eye contact with people and was still diagnosed
•    Anonymous said… Please consider trying a salicylate- and amine-free diet, also colours, flavours and glutamate-free. My ASD kid had behavioural issues similar to this as a toddler. I spotted an article in the paper about this diet, asked my gp and she said don't bother. But I figured it can't hurt to try for a couple of weeks. The day after starting my son calmed down significantly and life for everyone improved dramatically. If your child is already lacking enzymes in his gut this could be worth trying. The following website has all the information you need.
•    Anonymous said… Please take him to a child neurologist. They can also diagnose ASD and High Functioning Autism (Aspergers). Write down and record things you think are off to take with you. I barely had to fight for a diagnosis. My son has eye contact most of the time but still has HFA. The diagnosis is SO important to get your son the services he needs. Early intervention is key!
•    Anonymous said… Second opinion third opinion whatever it takes. Find psychologist that specializes in autism spectrum disorders. ..just don't give up. Took 4 years to get the diagnosis that I knew was correct.
•    Anonymous said… Sometimes it takes a long time to get a diagnosis, my son was diagnosed aged 10 even though I knew there were differences/frustrations from around 6 months. He was referred by everyone he came into contact with health visitors, two nursery schools, school and his doctor. But for the longest time the specialists just said challenging behaviour and not to give into him. The diagnosis when it came was high functioning autism but it was mentioned to me about PDA but some practitioners don't recognise this, but it certainly fits my son well. Hope you find someone who will help you getting to the truth. Remember parents know their children better than anyone else. Keep going xx
•    Anonymous said… Would get another opinion, insome children with autism aspergers etc. (Think there lumping it all under Autism Spectrum Disorder ,but its a spectrum so can be any were on it from low to middle to high and a whole lot more inbetween them).....They can actually have some eye contact and interaction with others deepending on the situation and the person just like they can show some empathy also etc..... sometimes some of these doctors have there preconsept ideas of just what autism should look like when infact its alot broader .......
•    Anonymous said… Thanks for a very interesting article. My main, and possibly sole, point of contention is the adult assumption that our children should comply with our instructions, simply on the basis that we're their parents (or teachers). Since different adults have different concepts of right and wrong, it stands to reason that there's no absolute definition of correct behaviour. Without any absolute to be guided by, it behoves us to allow children space to explore their own parameters rather than having everything laid out for them. This then opens up the possibility of empowering children through spoken observations and questions to develop a deeper understanding of their relationship with and their impact on other people they come into contact with, including other children. Manipulating their behaviour through punishment, reward, or sanctions and bribes of one kind or another, serves to undermine their personal and social development. What gets left behind is a compliant person - or a rebel - who is lost when confronted with new situations which can't be matched with stereotypes learnt in childhood. This person, constantly checking for approval, experiences loss of creativity and imagination in close relationships and in work situations. He or she is likely to be as flexible or inflexible as the upbringing s/he experienced, without being able to account for inconsistencies noticed by observers, defending poor decisions and resisting self-realisation and personal development throughout life. It's almost too easy - although not easy at all in the long-term - to opt for behaviour modification to suit the moment, the mood or the currently held philosophy of child-rearing. Empowerment produces deep long-term rewards and satisfaction for all concerned, but the rewards are the intangible outcome of generous trust, both in the child and in oneself as a parent. Having made these observations, I recognise that the number of physical, mental and emotional syndromes and their unprecedented proliferation in recent times, can complicate the process of raising children into adults responsible for their own attitudes and behaviour. But they can also lead us into reaching out for an expert, when the only problem is that were presented with a child-rearing experience we don't know how to handle, and we've lost the support of a community with ready access to people with natural understanding and wisdom.
•    Unknown said... hi thanks for your post. I am alpha 1 diagnosed PIZZ. I am also dyslexic and dyspraxic. My Father was, in hindsight, aspergers. He was a mechanical engineer My brother was dyslexic and unable to read or write when he left school at 16, my other brother was PIZZ and dyspraxic and my nephew is PIMZ, slightly less severe form of alpha 1, and is dyslexic, dyspraxic, OCD and has High Function Autism. So i definetley think there is a link between neuro diversity and Alpha 1. There is a little bit of research i have found that you might find useful. https://www.ncbi.nlm.nih.gov/pubmed/22414631
•    Unknown said... Europe and the US are well behind countries such as Israel (ref Eli Lewis) in their research on the impact of A1ATD in a number of other auto-immune conditions. It is now known that it can lead to T1 diabetes, and there is evidence that it can play a role in Crohn’s, Rhematoid Arthritis and other conditions. There is also some little known research which shows that it plays a role in so called psychiatric conditions such as bi-polar and OCD. As Autism has now been mooted as a auto-immune condition, it seems to me fairly obvious that there is a relationship between A1ATD and Autism. The gene expression is due to the legacy of communities where there has been inter marriage or lack of gene diversity and/or may be a Neanderthal inheritance. There is no doubt in my mind whatsoever, based on extensive reading, conversations with Eli Lewis in Israel (at the forefront of A1ATD research) and empirical evidence, that Autism and A1ATD are linked. One day the U.K. will wake up to this, but the defensive medicine practised by most doctors, and the lack of funding for advances in this area are hugely obstructive. There will come a time when the gene links are well known, when augmentation therapy is available for anyone with the deficiency, as a preventative measure, and the cost is not prohibitive. At this point there will be a breakthrough in the treatment of autoimmune conditions and Autism. Sadly, we are many years away from this I fear.
•    Unknown said... Cycling instructor is right - my daughter was A1ATD (PiZZ), T1 diabetic, possible Lupus and had Asperger’s. Doctors need to join up the dots.

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Classroom and Homeschooling Strategies for Students with High-Functioning Autism

There's been an explosive growth in the number of children with High-Functioning Autism (HFA) in recent years. Following is a list of some of the common issues that these individuals experience in the classroom and beyond. These characteristics are usually not isolated ones; rather, they appear in varying degrees and amounts:
  • coordination problems with both large and small muscle groups
  • difficulty in following complicated directions or remembering directions for extended periods of time
  • difficulty in working with others in small or large group settings
  • difficulty staying on task for extended periods of time
  • easily confused
  • easily distractible
  • inflexibility of thought; is difficult to persuade otherwise
  • low tolerance level and a high frustration level
  • poor auditory memory—both short term and long term
  • poor concept of time
  • poor handwriting skills
  • spontaneous in expression; often cannot control emotions
  • weak or poor self-esteem



Whether you have a special education class, or just a few students on the autism spectrum, the chances are you could use some help. Below are some crucial points to consider when teaching these “special needs” students:

1. An increase in unusual or difficult behaviors probably indicates an increase in anxiety for the student with HFA. Sometimes anxiety is caused by feeling a loss of control. Many times the anxiety will only be alleviated when the student physically removes herself from the stressful event or situation. If this occurs, a program should be set up to assist the student in re-entering and/or staying in the stressful situation. When this occurs, a "safe-place" or "safe-person" may come in handy.

2. Assume nothing when assessing skills. For example, the child with HFA may be a "math whiz" in Algebra, but not able to make simple change at a cash register. Or, she may have an incredible memory about books she has read, speeches she has heard or sports statistics, but still may not be able to remember to bring a pencil to class. Uneven skills development is a hallmark of HFA.

3. Avoid verbal overload. Use shorter sentences if you perceive that the “special needs” student does not fully understanding you. Although she probably has no hearing problem and may be paying attention, she may have difficulty understanding your main point and identifying important information.

==> Teaching Social Skills and Emotion Management to Children and Teens with High-Functioning Autism

4. Be aware that normal levels of auditory and visual input can be perceived by the HFA student as too much or too little. For example, the hum of florescent lighting is extremely distracting for some children on the autism spectrum. Consider environmental changes (e.g., removing "visual clutter" from the room, seating changes, etc.) if the student seems distracted or upset by her classroom environment.

5. Being an effective teacher of “special needs” students requires many tools, most of which are chosen through trial and error. Many resources are available to help you plan lessons, manage classroom environments, and develop high-quality instruction for HFA students, for example:
  • develop and maintain a pool of mentors
  • develop a system that allows for easy and comprehensive data collection to help monitor and adapt lessons
  • evaluate and adapt lessons as necessary
  • gather some “tricks of the trade” from fellow teachers, including those who teach special education
  • keep a list of resources for teaching, lesson plans and professional development
  • monitor and verify student responses to lessons
  • set a professional development plan for yourself and track your goals
  • use a multiple-scenario approach to developing lesson plans
  • use peers to review lesson plans and to develop ideas that might be applicable

6. Behavior management works, but if incorrectly used, it can (a) encourage robot-like behavior, (b) provide only a short term behavior change, or (c) result in some form of aggression. Use positive and chronologically age-appropriate behavior procedures.

7. Do not take misbehavior personally. The HFA student is not a manipulative, scheming child who is trying to make life difficult for you. He is seldom, if ever, capable of being manipulative. Usually misbehavior is the result of efforts to survive experiences which may be confusing, disorienting or frightening. Young people on the spectrum are, by virtue of their disorder, egocentric. Most have extreme difficulty reading the reactions of others.

8. If the HFA student has a short attention span, consider the following:
  • break assignments into smaller pieces to work on in short time periods
  • carry out everyday routines consistently
  • develop a reward system for good behavior, completing work on time and participating in class
  • set clear expectations 
  • share ideas with moms and dads so they can help with homework
  • space breaks between assignments so the child can refocus on tasks
  • use visual and auditory reminders to change from one activity to the next

9. If the HFA student does not seem to be learning a task, break it down into smaller steps or present the task in several different ways (e.g., visually, verbally, and physically).

10. If your class involves pairing off or choosing partners, either draw numbers or use some other arbitrary means of pairing. Alternatively, ask an especially kind student if he or she would agree to choose the child with AS or HFA as a partner before the pairing takes place. The student with HFA is most often the kid left with no partner. This is unfortunate since this youngster could benefit most from having a partner.



11. If your student with HFA uses repetitive verbal arguments and/or repetitive verbal questions, you will need to interrupt what can become a continuing, repetitive litany. Continually responding in a logical manner or arguing back seldom stops this behavior. The subject of the argument or question is not always the subject which has upset the student. More often, she is communicating a feeling of loss of control or uncertainty about someone or something in the environment.

Try requesting that the student write down the question or argumentative statement. Then write down your reply. This usually begins to calm her down and stops the repetitive activity. If that doesn't work, write down her repetitive question or argument and ask her to write down a logical reply (perhaps one she thinks you would make). This distracts from the escalating verbal aspect of the situation and may give the student a more socially acceptable way of expressing frustration or anxiety. Another alternative is role-playing the repetitive argument or question with you taking her part and having her answer you as she thinks you might.

12. Kids with HFA have problems with abstract and conceptual thinking. Some may eventually acquire abstract skills, but others never will. When abstract concepts must be used, use visual cues (e.g., drawings or written words) to augment the abstract idea. Avoid asking vague questions like, "Why did you do that?" Instead, say, "I did not like it when you slammed your book down when I said it was time for gym. Next time, put the book down gently and tell me you are angry. Were you showing me that you did not want to go to gym, or that you did not want to stop reading?" Avoid asking essay-type questions. Be as concrete as possible in all your interactions with this “special needs” student.

13. Students on the autism spectrum have trouble with organizational skills, regardless of their intelligence and/or age. Even a "straight A" student with HFA who has a photographic memory can be incapable of remembering to bring a pencil to class or of remembering a deadline for an assignment. In such cases, assistance should be provided in the least restrictive way possible. Strategies could include having the student put a picture of a pencil on the cover of her notebook or maintaining a list of assignments to be completed at home.

==> Teaching Social Skills and Emotion Management to Children and Teens with High-Functioning Autism

Always praise the student when she remembers something she has previously forgotten. Never denigrate or "harp" at her when she fails. A lecture on the subject will not only NOT help, it will often make the problem worse. The student may begin to believe she can’t remember to do or bring these things. Students on the spectrum seem to have either the neatest or the messiest desks or lockers in the school. The one with the messiest desk will need your help in frequent cleanups of the desk or locker so that she can find things. Remember that she is probably not making a conscious choice to be messy. She is most likely incapable of this organizational task without specific training. Attempt to train her in organizational skills using small, specific steps.

14. Prepare the HFA student for all environmental and/or changes in routine (e.g., assembly, substitute teacher, rescheduling, etc.) Use a written or visual schedule to prepare her for change.

15. Remember that facial expressions and other social cues may not work. Most children with AS and HFA have difficulty reading facial expressions and interpreting “body language.”

16. Since these “special needs” students experience various communication difficulties, do not rely on them to relay important messages to their mother or father about school events, assignments, school rules, etc. (unless you try it on an experimental basis with follow-up, or unless you are already certain that the student has mastered this skill). Even sending home a note for the child’s parent may not work. The student may not remember to deliver the note or may lose it before reaching home. Phone calls to moms and dads work best until the skill can be developed. Frequent and accurate communication between the teacher and parent is very important.

17. Use and interpret speech literally. Until you know the capabilities of the HFA student, you should avoid:
  • sarcasm (e.g., saying, "Great!" after the student has just spilled a bottle of ketchup on the table)
  • nicknames
  • idioms (e.g., save your breath, jump the gun, second thoughts)
  • double meanings (most jokes have double meanings)
  • "cute" names (e.g., Pal, Buddy, Wise Guy)

While each student with HFA is different, there are standard methods that can serve both the “special needs” child and the educator. A movement is emerging in education called "neurodiversity," which suggests that teachers view their “special needs” students in terms of "diversity" rather than "disability." By embracing this more positive viewpoint and implementing techniques that build on strengths, teachers can help ensure that their HFA students achieve success both in the classroom and out in the real world.

Resources for parents of children and teens on the autism spectrum:
 
 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

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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 starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child 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 in full force.

Click here for the full article...

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Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the 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 to read the full article…

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Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

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Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

Click here to read the full article...

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Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

Click here for the full article...
 
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A child with High-Functioning Autism (HFA) 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.

Click here for the full article...

"Thinking Errors" in Asperger's and High-Functioning Autistic Children

Philosophers have long known that your thoughts can be your own worst enemy. As Shakespeare once said, "There is nothing either good or bad, but thinking makes it so." Children and teens with Aspergers and High-Functioning Autism are especially vulnerable to such “thinking errors” due to a phenomenon called “mind-blindness." 


 
 
More articles for parents of children and teens on the autism spectrum:
 
Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

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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 starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child 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 in full force.

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

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Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

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A child with High-Functioning Autism (HFA) 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.

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Part 12: Teaching Strategies for Students with Asperger’s and High-Functioning Autism – Emotional Vulnerability

Kids with Asperger’s (AS) and High-Functioning Autism (HFA) have the intelligence to participate in regular education, but they often do not have the emotional resources to cope with the demands of the classroom. These “special needs” kids are easily stressed due to their inflexibility. Self-esteem is low, and they are often very self-critical and unable to tolerate making mistakes.

Young people with AS and HFA, especially teenagers, may be prone to depression (as a side note, a high percentage of depression in grown-ups with AS and HFA has been documented). Rage and temper outbursts are common in response to stress and frustration.

Kids with AS and HFA rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be. Interacting with peers and school staff – and coping with the ordinary demands of everyday life take constant strenuous effort.

==> Teaching Students with Aspergers and HFA

Programming Suggestions for Teachers:

1. Teachers must be alert to changes in behavior that may indicate depression (e.g., greater levels of disorganization, inattentiveness, isolation, decreased stress threshold, chronic fatigue, crying, suicidal remarks, etc.). Do not accept the youngster's assessment in these cases that he is "OK."

2. Teach the AS or HFA student how to cope when stress overwhelms her in order to prevent outbursts. Help the youngster write a list of very concrete steps that can be followed when she becomes upset (e.g., breathe deeply three times; count the fingers on your right hand slowly three times; ask to see the special education teacher, etc.). Include a ritualized behavior that the youngster finds comforting on the list. Write these steps on a card that is placed in the pocket so that they are always readily available.



3. Report symptoms to the youngster's therapist or make a mental health referral so that the youngster can be evaluated for depression and receive treatment if this is needed. Because AS and HFA kids are often unable to assess their own emotions and can’t seek comfort from others, it is critical that depression be diagnosed quickly.

4. Kids with AS and HFA are so easily overwhelmed by environmental stressors and have such profound impairment in the ability to form interpersonal relationships that it is no wonder they give the impression of fragile vulnerability and immaturity. When these “special needs” youngsters are compared to their “typical” peers, it becomes very evident just how different they are and the enormous effort they have to make to live in a world where no concessions are made and where they are expected to conform.

5. Prevent outbursts by offering a high level of consistency. Prepare these kids for changes in daily routine in order to lower stress. Kids on the autism spectrum frequently become fearful, angry, and upset in the face of forced or unexpected changes.


6. AS and HFA kids who are very fragile emotionally may need placement in a highly structured special education classroom that can offer an individualized academic program. These kids require a learning environment in which they see themselves as competent and productive. Accordingly, keeping them in the mainstream where they can’t grasp concepts or complete assignments serves only to lower their self-concept, increase their withdrawal, and set the stage for depression. In some situations, a personal aide can be assigned to the youngster rather than special education placement. The aide offers emotional support, structure and consistent feedback.

7. Kids with AS and HFA must receive academic assistance as soon as difficulties in a particular area are noted. These kids are quickly overwhelmed and react much more severely to failure than do other kids.

8. It is critical that teenagers with AS and HFA who are mainstreamed have an identified support staff member with whom they can check-in at least once daily. This person can assess how well the student is coping by meeting with him daily and gathering observations from other teachers.

==> Teaching Students with Aspergers and HFA

9. Be aware that teenagers with AS and HFA are especially prone to depression. Social skills are highly valued in the teenage years, and the AS or HFA student realizes she is different and has difficulty forming normal relationships. Academic work often becomes more abstract, and the teen finds assignments more difficult and complex. In one case, teachers noted that an AS teen was no longer crying over math assignments, and therefore believed that she was coping much better. In reality, her subsequent decreased organization and productivity in math was believed to be a function of her escaping further into her inner world to avoid the math, and thus she was not coping well at all.

10. Affect as reflected in the teacher's voice should be kept to a minimum. Be calm, predictable, and matter-of-fact in interactions with the AS or HFA youngster while clearly indicating compassion and patience. The teacher who does not understand that it is necessary to teach AS and HFA kids seemingly obvious things will feel impatient and irritated. Do not expect the “special needs” youngster to acknowledge that he is sad or depressed. In the same way that they can’t perceive the emotions of others, these kids can also be unaware of their own emotions. They often cover up their depression and deny its symptoms.

Teachers can play a vital role in helping kids with AS and HFA learn to negotiate the world around them. Because these kids are frequently unable to express their fears and anxieties, it is up to caring adults to make it worthwhile for them to leave their safe inner fantasy lives for the uncertainties of the external world.

Staff who work with these youngsters in schools must provide the external structure, organization, and stability that they lack. Using creative teaching strategies is crucial, not only to facilitate academic success, but also to help these young people feel less alienated from other human beings and less overwhelmed by the ordinary demands of everyday life.

==> Teaching Students with Aspergers and HFA


 COMMENTS:

 •    Anonymous said…  you are not alone!"Just keep swimming..."
•    Anonymous said… Absolutely spot on in relation to my 10 year old son.. & worthwhile sharing with his school!
•    Anonymous said… Absolutely spot on. How I've described my son and why I moved him to a school which actively seeks to get the best from him every day, without the mainstream inadequacies. He has gone from strength to strength.
•    Anonymous said… Absolutely...my 16 year old is dealing with a chaotic class right now. He has not failed a class ever but is on the verge. He is begging to be switched out, so we are pushing the admin to allow him to move.
•    Anonymous said… Every time I read " depression" next to "mainstream", I hardly believe that school officials would be accommodating or patient enough to deal with emotional HFA child. I suspect they'll just drop it on the clinical psychologist laps to avoid liabilities.
•    Anonymous said… I just started homeschooling my 11 year old girl. I don't know what took me so long! Five years of banging my head against the wall of the public school system. What was I waiting for??
•    Anonymous said… I'm thinking about pulling my 10 year old 4th grader from Public School!!! Same as you both, I'm mad at myself for letting him suffer this long.
•    Anonymous said… It's a fear thing. If I didn't have the K12 program I don't think I would have the guts to do it yet.
•    Anonymous said… Mine is in her thirties. I had to fight with the school almost constantly (and college was no picnic neither). She lacks one class from having an Associate's Degree. She lacks a science class because we just could not find a science class instructor who really cared to do any modification at all. She did have a "special populations" counselor at the college and that did help to an extent (but not when it came to the science dept ... ironic how ignorant they are). The modification would have been minor (although it is not a minor issue when not put into place) and she is, of course, expected to complete the workload and pass the exams just like everyone else. I am almost sixty. My husband just retired and I am totally burnt out. At least she does have three technology degrees from the college (and she definitely EARNED them). However, she is a grocery store clerk and has not found a job in her chosen field ... kind of doubtful (although hopeful) that she someday will. I feel like I fought with the school district the entire time she was growing up. They did not seem to understand what autism is at the time she attended school .... much less that there are different levels of autism. They tried to label her MR, but I resisted. They said that they did not have a program for autism. I told them that they were ACQUIRING one! She was mainstreamed, because I insisted. Sure, there were bullies .... both children AND adults. However, there were some of the most wonderful people .... both children AND adults .... who came to her aid at times. And, yes, I did have to go to the school and make the school officials confront the bullies. I had to actually threaten the school district with a law suit one time because the prinipical did not want to contront the bullies who were htting my child by the lockers. The principal stated that she could not punish the bullies as she did not witness the abuse. I countered that comment with the fact that she could "call them on the carpet and put them on notice" and tell them and their parents what she had heard about their behavior. Fortunately, this was resolved ..... however, it was totally inappropriate on the school's part that I had to take such measures to protect my child. I realize that I have rambled on, but this is a small slice of our experience. It seems that it is an uphill battle, but, although burnt out, I am glad that I fought. It still is not ideal. She lives with us and the government does not give her any type of check (as some people probably think). Her father and I have always been working class people. Lol ... the government relies on people like us to support welfare with the taxes they take from our paychecks. Our daughter takes care of very basic things with her part-time job money. She cannot afford to pay rent, so she lives with us. (Not many people are catagoried as "full-time" in the grocery store). She did qualify for "Obama-Care" so at least she has some type of coverage. We live in Texas (that probably explains part of it anyway).
•    Anonymous said… So incredibly timely for me as my 13 yo ASD son is struggling with school. I will be sharing this with this school. They have been wonderful in working with him.
•    Anonymous said… So very true. My son calls high school - social hell.
•    Anonymous said… Thank you for posting. I am going to pass this on to my daughters principal.
•    Anonymous said… That describes my child so well!
•    Anonymous said… That's why I homeschool my oldest for right now. When I have tried communicating his needs before we started school they seemed like they didn't want to help at all.
•    Anonymous said… The school structure just didn't fit him- so much stress from transitions, unexpected changes, assemblies, substitutes and rule changes. He would fall behind and only two teachers tried to do anything. He is homeschooling this year and is doing fantastic and also making friends!
•    Anonymous said… This is so spot on! Hand this to all of your Aspie's teachers!
•    Anonymous said… this is what I was talking to u about...
•    Anonymous said… Very helpful!
•    Anonymous said… We pulled our son from the public system in the 5th grade and enrolled him in a mainstream, small private school where he does much better socially...but it still isn't perfect. He does not require a special needs school, but he does require specialized care at times. I really wish there were more options out there for these high functioning, quirky kids.
•    Anonymous said… Yay! The BEST description of my son!
*  Anonymous said... This was my son to a T, and despite lawyers, advocates, etc. we never got him the support he really needed in school. Barriers included many teachers' unwillingness or inability to believe that this very bright, verbal, gifted and often funny kid was so significantly affected by this hidden disability; my son's unwillingness to have supports/accommodations that singled him out as "different;" and the fact that by the time he got diagnosed he already had full-blown depression as well as (I believe) PTSD from all the stress of the first 7 years of his schooling, and from being blamed for all his own problems by almost everyone. I really hope this information is passed along and helps others.....If you suspect your child may have special needs, do not put off going to a specialist!! Our pediatrician was treating him for ADHD all those years and even when he was getting in trouble in school no one suggested further testing until I got him to the right therapist. 

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Teaching Nonverbal Communication Skills to Kids on the Autism Spectrum

"How can parents teach nonverbal communication and body language to a child who can read neither?"

Most children communicate naturally and instinctively. However, communication is a highly complex process that requires the spontaneous organization of several different functions. For example:
  • Emotional controls: to be comfortable socially requires that a child learns how to control his emotions and use them in a way appropriate to the circumstance
  • Listening skills: for a child to understand what she is hearing requires that what she hears is automatically turned into understood thoughts
  • Reading body language: reading body language accurately requires that the child learns the meaning of non-verbal cues (e.g. smiling, frowning, etc.)
  • Verbal communication: to speak naturally requires that the cerebellum has hard wired the process of turning thoughts into speech



With Asperger's (AS) and High-Functioning Autism (HFA), one or more of these skills are not fully developed, so children on the autism spectrum ‘overload’ their working memory and don’t take into account all of the various information required for natural social interaction.

Good communication is the foundation of any successful relationship – and nonverbal communication speaks the loudest (e.g., facial expressions, gestures, eye contact, posture, tone of voice, etc.). The ability to understand and use nonverbal communication is a powerful tool that can help children connect with others, express what they really mean, and build better relationships.

Since nonverbal communication does not come naturally to AS and HFA children, it must be taught. Below is some vital information that parents (and teachers) can share with their “special needs” child to help him or her begin to develop the ability to read nonverbal cues. Change the wording as needed so your child will understand. And don’t be surprised if, at times, you child feels as though you are speaking a foreign language, because nonverbal communication is indeed foreign to AS and HFA kids. Pick one point at a time to discuss (perhaps one point a day over the course of 12 days), and try to give examples of each point that your child can relate to directly.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

Point #1: Discuss body movements and posture. Consider how our perceptions of people are affected by the way they hold their head, sit, walk, or stand up. The way we move and carry ourselves communicates a wealth of information to others. This type of nonverbal communication includes stance, posture, bearing, and subtle movements.

Point #2: Discuss eye contact. Since the visual sense is dominant for many people, eye contact is an especially important type of nonverbal communication. The way we look at someone can communicate many things (e.g., attraction, interest, affection, hostility, etc.). Eye contact is also important in maintaining the flow of conversation and for evaluating the other person’s response.

Point #3: Discuss facial expressions. The human face is extremely expressive and able to convey numerous emotions without saying a word. And unlike some forms of nonverbal communication, facial expressions are universal. The facial expressions for anger, fear, happiness, sadness, surprise, and disgust are the same across cultures.

Point #4: Discuss gestures. Gestures include waving, pointing, using your hands when you are arguing or speaking animatedly. We often use gestures without thinking about it.

Point #5: Discuss space. Has anyone ever told you that they felt uncomfortable during a conversation because you were standing too close and invading their space? Everyone has a need for physical space, although that need differs depending on the person, the situation, and the closeness of the relationship. We can use physical space to communicate many different nonverbal messages (e.g., signals of affection, aggression, submissiveness, dominance, etc.).

Point #6: Discuss touch. You communicate a great deal through touch. Think about the nonverbal messages given by the following acts: a controlling grip on your arm, a patronizing pat on the head, a reassuring pat on the back, a timid tap on the shoulder, a warm bear hug, or a weak handshake.

Point #7: Discuss voice. It’s not just what we say, it’s “how” we say it. When you speak, the other person “reads” your voice in addition to listening to your words. Things the other person may pay attention to include how loud you speak, sounds that convey understanding (e.g., ahh” and “uh-huh”), your timing and pace, and your tone and inflection. Think about how someone's tone of voice can indicate anger, sarcasm, affection, or confidence.

Point #8: Oftentimes, what comes out of your mouth and what you communicate through your body language are two totally different things. When faced with these mixed signals, the person that is listening to you has to choose whether to believe your verbal or nonverbal message. And in most cases, the other person is going to choose the nonverbal, because it's a natural, unconscious language that broadcasts your true feelings and intentions in any given moment.

Point #9: Pay attention to contradictions. Nonverbal communication should support what is being said. Is your friend saying one thing, but his body language saying something else (e.g., is he telling you “yes” while shaking his head no)? Don’t dismiss your gut feelings. If you get the sense that someone isn’t being honest, you may be picking up on a mismatch between verbal and nonverbal cues.

Point #10: The way we listen, move, look, and react tells the other person whether or not we care, if we are being truthful, and how well we are listening. When our nonverbal signals match up with the words we are saying, it increases trust and rapport. When our nonverbal signals don’t match up, it generates mistrust and confusion.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

Point #11: When you interact with your friends and classmates, you continuously give and receive wordless signals. All of your nonverbal behaviors send strong messages (e.g., how close you stand to someone, how fast or how loud you talk, how much eye contact you make, the gestures you make, the way you sit, etc.). These messages don't stop when we stop speaking either. Even when we are silent, we are still communicating nonverbally.

Point #12: Lastly, along with your child, watch and discuss the video below on “reading facial cues”:



As your AS or HFA child continues to pay attention to the nonverbal cues he sends and receives, his ability to communicate will improve. By using the points listed above, parents can help their child gain the skills needed to communicate nonverbally, which is often the most important component of communication.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

 ==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

The DON'Ts After the Diagnosis of Asperger's

For some moms and dads, a diagnosis of Asperger's may feel like a kick to the groin. You feel overwhelmed, and your world has been turned upside down. 



Part 11: Teaching Strategies for Students with Asperger’s and High-Functioning Autism – Academic Difficulties

Kids with Asperger’s (AS) and High-Functioning Autism (HFA):
  • frequently have an excellent rote memory, but it is mechanical in nature (i.e., the youngster may respond like a video that plays in set sequence)
  • have a pedantic speaking style and impressive vocabularies that give the false impression that they understand what they are talking about, when in reality they are merely parroting what they have heard or read
  • have poor problem-solving skills 
  • tend to be very literal (i.e., their images are concrete, and abstraction is poor)
  • usually have average to above-average intelligence – especially in the verbal sphere – but lack high level thinking and comprehension skills

Programming Suggestions for Teachers:

1. The writing assignments of students with AS and HFA are often repetitious, flit from one subject to the next, and contain incorrect word connotations. These kids frequently do not know the difference between general knowledge and personal ideas, and therefore assume the teacher will understand their sometimes obscure expressions.

2. Provide a highly individualized academic program engineered to offer consistent successes. The youngster with AS or HFA needs great motivation to not follow his own impulses. Learning must be rewarding and not anxiety-provoking.

3. Offer added explanation, and try to simplify when lesson concepts are abstract.

4. Kids with AS and HFA often have excellent reading recognition skills, but language comprehension is weak. Do not assume they understand what they so fluently read.

5. Multiple levels of meaning, emotional nuances, and relationship issues as presented in novels will often not be understood.



6. Do not assume that kids with AS and HFA understand something just because they parrot back what they have heard.

7. Capitalize on these students’ exceptional memory. Retaining factual information is frequently their forte.

8. Academic work may be of poor quality because the youngster with AS or HFA is not motivated to exert effort in areas in which she is not interested. Very firm expectations must be set for the quality of work produced. Work executed within timed periods must be not only complete, but done carefully. The “special needs” youngster should be expected to correct poorly executed classwork during recess or during the time she usually pursues her own interests.

Teaching Students with Aspergers and HFA

Kids on the Autism Spectrum and Problems with Disruption of Routine

"Our daughter (autistic) has trouble managing her mood and behavior when changes in her daily routine occur. How should we handle this?"

Children with Asperger’s (AS) and High-Functioning Autism (HFA) tend to crave sameness, despise change, become upset when there is a break in routine, or experience a “meltdown” when it is time to transition from one activity to another.

Among these “special needs” children, there is a propensity for doing - or thinking about - the same things over and over, because doing so brings great comfort (e.g., repeatedly lining up toys in a certain order). Unlike “typical” children who may, for example, experiment with lining up train cars in a variety of ways, and move them along the track once they have decided on an order, a youngster with AS or HFA might have only one acceptable order – and have a temper tantrum if a single car is moved out of place.

Many children on the autism spectrum have deep-seated “rituals" where certain things MUST be done in an exact way every time. For example, (1) “Dad must hand me the green towel with the frog on it,” (2) “I must step out of the tub onto a dry towel lying on the floor,” (3) “Dad must pull the bathtub plug,” and (4) “He must dry me off starting with my feet first.” Heaven help dad if he pulls the plug out of sequence or if the frog towel is in the dirty laundry. In this happens, the AS or HFA youngster can fall to pieces, insisting that the tub be refilled and the entire sequence be done again, this time in the correct order.
 
 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

One expert on Asperger’s, Tony Atwood, describes how these rituals can become more and more agonizing:

"The bedtime routine may have started with only lining up three toys, but becomes an elaborate ritual where dozens of toys have to be placed according to strict rules of order and symmetry. When a journey to a destination has followed the same route several times, there is the expectation that this must be the only route and no deviation is tolerated."

What drives this incessant desire for routine? Maybe it’s a form of control, or a way to cope in an unpredictable and frightening world. In any event, the insistence on sameness is unmistakably there.

The strong need to avoid the disruption of routine can make a child with AS or HFA look very rigid to the outside world. Parents – and even siblings – can feel held hostage to certain routines or rituals, dreading the meltdown that will ensue if they interfere with them.

This inflexibility can have other social implications, too. For example, the AS or HFA child may become extremely rigid regarding rules, and want to help enforce them to the dismay of their friends and classmates. The youngster may try to “script” the play of other children so that some pretend scenario is acted out exactly as he or she pictured it. This resembles the “lining up toys” behavior, only now it is peers and their behavior that the youngster is trying to put in order. If the other children are noncompliant, this may lead to a tantrum or meltdown. The give-and-take necessary to play or interact with peers in more complex, mature ways is hindered by the AS or HFA child’s strong need for sameness.

Researchers have demonstrated that the tendency to have rigid routines, the propensity for having a “special topic," and repetitive sensory and motor behaviors (e.g., stimming) often occur together. Whether these various ways of being “rigid” are necessarily connected in some way (neurologically speaking) is still being debated.



The good news about the AS or HFA youngster’s strong desire to avoid disruption of routine is that it can be relatively easy for parents to respond to. The vast majority of children of all ages function better with structure, routine, and predictability in their life. Kids on the autism spectrum simply take it to the extreme and have difficulty adjusting to change.

If your youngster has trouble managing his mood and behavior when changes in his daily routine occur, try to provide him with as much predictability as possible. This can be accomplished by creating a highly structured environment where daily tasks take place in a certain order and things are physically in order. For example:
  • Bulletin boards with individual cards for each task that you can move around with pins, calendars you make on your computer, or dry-erase boards will make it easy for you to post the changes without having to recreate the list every time there is a change.
  • Lists, charts and calendars on the wall help your youngster see what will happen each day. 
  • Warning your child ahead of time of upcoming changes can help prevent upset, or minimize it.



Is there ever a time when you should step in and stop your AS or HFA child from engaging in his or her repetitive routines?

The answer is often that these behaviors are a problem for parents and teachers rather than the youngster herself, who is very content to be preoccupied in these ways. Thus, it is unlikely that your youngster will want to change her behavior. The rules of thumb when making decisions about whether or not to intervene or change routines and rituals are to ask yourself the following:
  • How much of a problem is it – and who for?
  • Does the behavior endanger my youngster or others? 
  • Does the behavior increase the likelihood of social rejection or isolation?
  • Does the behavior interfere with other enjoyable activities or school work?
  • Will the behavior be acceptable in 5 years from now?

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

Treatment—

An effective treatment program for rigidity and insistence on sameness actively engages the youngster’s attention in highly structured activities, builds on his interests, offers a predictable schedule, provides regular reinforcement of behavior, and teaches tasks as a series of simple steps. This type of program generally includes the following:
  • cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious kids on the spectrum to manage their emotions better and cut back on obsessive interests and repetitive routines
  • medication for co-existing conditions (e.g., depression and anxiety)
  • occupational or physical therapy for kids with sensory integration problems or poor motor coordination
  • parent-training and support to teach moms and dads behavioral techniques to use at home
  • social skills training, a form of group therapy that teaches AS and HFA kids the skills they need to interact more successfully with their peers
  • specialized speech/language therapy to help kids who have trouble with the pragmatics of speech (i.e., the give-and-take of normal conversation)

Because change causes anxiety in young people with AS and HFA, they will want to live by rigid rules that they construct for themselves. One of their main rules goes something like this:  

“My routine must NOT be disrupted, and involves X, Y and Z. Each time I can do X, Y and Z – in that order – my life has some predictability. When I don’t have this predictability, I feel anxious, which is a very painful emotion that needs to be avoided at all costs.”