HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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Viewing Aspergers as a Difference Rather Than a Disability

If one examines the facts, attempting to be non-judgmental about them, Aspergers kids could be said to show the following differences (these are based on diagnostic features):
  1. communicates less than other children do
  2. has a strong preference for experiences that are controllable rather than unpredictable
  3. has strong, persistent interests
  4. is very accurate at perceiving the details of information
  5. may be fascinated by patterned material, be it visual (shapes), numeric (dates, timetables), alphanumeric (number plates), or lists (of cars, songs, etc.)
  6. may be fascinated by systems, be they simple (light switches, water taps), a little more complex (weather fronts), or abstract (mathematics)
  7. may have a strong drive to collect categories of objects (bottle tops, train maps), or categories of information (types of lizard, types of rock, types of fabric, etc.)
  8. notices and recalls things other people may not
  9. possesses a view of what is relevant and important in a situation, which may not coincide with other people’s view
  10. shows relatively little interest in what the social group is doing, or being a part of it
  11. spends more time involved with objects and physical systems than with people
  12. tends to follow their own desires and beliefs rather than paying attention to, or being easily influenced by, others’ desires and beliefs

The list could be expanded, but these 12 behavioral features are sufficient to illustrate that Aspergers kids are different in ways that can be described in value-free terms, none of which imply any necessary disability.

Most of the above facts show the youngster as immersed in the world of things rather than people, which might be a basic way of defining the difference between a child with Aspergers and one without it. Being more object-focused than people-focused is clearly only a disability in an environment that expects everyone to be social. Aspergers children would cease to be disabled as soon as society’s expectations change.

For many years now, there has been a movement underfoot to reclassify Aspergers as a condition of being “differently able” rather than “disabled.” Although parents and advocates of Aspergers youngsters may beg to differ, those in favor of changing the classification do make some compelling points. Here are the main ones currently:

1. Routines are symptom of Aspergers, and it has been documented that Aspies have the hardest time functioning in a classroom setting where such order is frequently interrupted or even missing. This may be seen as a disability to some, but others simply believe it to be a sign that the youngster has a very serious affection for that which he can control versus the unknown.

2. The mere fact that Aspies are seen paying attention to those things for which they have a general interest (as opposed to those that teachers believe they should notice) does not make Aspergers a disability. Instead, it may be viewed as a tacit nod to absolute honesty in one’s desires, and therefore is simply an ability to overcome social conditioning.

3. The systematic organization of things and items may be of unique interest in a youngster diagnosed with Aspergers. It does not really matter if this is the means of taking a picture with a camera by holding down a button, turning on and off a light, or delving into the intricacies of a physics equation. The problem arises when the system in which the youngster shows interest is simple, and soon has some clamoring at needing to be outgrown.

4. What earned Aspies the description of ‘little professors’ may not be a disability but could be much more aptly described as a strong interest in a given field of study. This causes the Aspergers child to notice nuances others do not and thus renders him differently able and perhaps even superior in perception.

5. What has been referred to as latent antisocial behavior so often exhibited in young kids diagnosed with Aspergers (characterized by their inability or unwillingness to interact with moms and dads extensively) is found to be an expression of their desires to pay more attention to the world of objects as opposed to subjects. This may be attributed to a simply matter of preference, not a disability.

6. Perhaps the most convincing fact used by those suggesting that Aspergers is not a disability rests in the fact that the mere decision to value one trait or situation more than another is one of personal preference, not one born from a lack of ability. Therefore, a child who does not interact well with others – but instead finds it far more important to invest time in physics and other subjects he deems important – may be considered eccentric, but it does not render him disabled.

It is not clear why the object-focused child is seen as doing something less valuable than the people-focused child or why the Aspie’s behavior should be seen as an indication of impairment. In fact, behavior in Aspergers is not better or worse than that seen in typical development.

The Aspergers Comprehensive Handbook

16 comments:

Anonymous said...

What I find interesting about this entire concept is that when I was a kid and was first classified as "gifted" in the first grade, everyone thought it was grand. Even the term "gifted" makes it sound happy and wonderful. Everyone wants a "gifted" child!

However, in all actuality, it is a learning disability. And having a learning disability does not mean that your stupid or otherwise "less" than the rest of the population. In my opinion, it just means that your learning needs are different than the average student in your age group.

Being gifted made me different. I had social issues because I couldn't relate to children my own age. I often zoned out during class because I was bored out of my mind. I procrastinated because I simply had no interest in the subjects I was being taught. On the other hand, I had very narrow interests and became rather obsessed with things like Dinosaurs in elementary school, Star Wars in Middle School and Harry Potter in High School. And by obsessed, I mean obsessed. 'Twas all I talked about. Drove my family and few friends absolutely crazy.

I didn't have a problem with being different though. Still don't. What I would have liked would have been the opportunity to learn material at my own pace, instead of having to sit through a classroom full of struggling readers as they read. one. word. at. a. time. aloud. and I had finished the entire story by the time they finished their paragraph. I would have loved to have had teachers that understood my "disability" as an "ability" so they weren't yelling at me to pay attention or stop doodling or stop writing various novel-length fan-fiction stories.

I'm surprised, considering that most of these adults who wish to have Aspie-ness changed most likely went through the same things that I did as a student. My district now gives IEPs to gifted kids for enrichment opportunities (sitting in with an older grade for a particular subject) and study hall time as early as elementary school. They have done this because of the realization that being gifted falls under the exceptional learning umbrella.

Regardless of labels, I don't know why anyone would want to do something that would lessen the opportunities for the *NEXT* generation of kids with that specific "difference." I'm sorry, but to me, it seems rather selfish and stereotypically Aspie. These select groups of Aspie adults who want to get rid of the diagnoses and just be "quirky individuals" are not thinking about the fact that by having the diagnosis the next students will be able to sit ahead in math and science classes so they aren't bored out of their mind, they'll be able to qualify for various therapies that may help them deal with their levels of stress and anxiety, and they will be able to develop a confidence against being teased and ridiculed by others in school.

I get that I'm a parent, and I may see it differently. But my husband is an adult-diagnosed Aspie and he wishes that his parents would have thought to take him and have him evaluated as a child because of the teasing and such that he went through in school, along with the boredom experienced in certain areas and the struggle he had with the abstract concepts in school.

So for these people to say that they just want it to be a personality "thing" -- they don't seem to be thinking about their childhoods nor the childhood of the several billion future Aspies that may or may not even exist yet.

The whole movement just seems to be getting on my nerves. Perhaps I'm biased because of my son. Perhaps I'm biased because I'm in the process of opening a school in my area just for kids with Asperger's, ADHD and who are otherwise gifted. It does seem awfully selfish to me though -- it lacks the forethought of the future generations.

Anonymous said...

I don't want to "cure" my son of his Asperger's. I love his personality and I love him just the way he is. It doesn't bother me he isn't a social butterfly. It didn't even bother me that he didn't get all excited and greet me when I walked through the door until he was almost 3 years old. It doesn't bother me that he doesn't "look me in the eye."

But then again, my favorite fictional characters growing up were people like Spock, Data (TNG) and Severus Snape. All of which, minus the fact that Data is actually an android, could very easily be considered Aspies in their own right. And I married one. Obviously, I have an affinity for the non-emotional, non-social, intelligent and quirky being.

So don't get me wrong -- I don't want it to be a labelled "disability" so that I can take my kid to social therapy sessions and try to "fix" him. He doesn't need fixed. THAT, I agree with.

What I do want is for him to be able to have a fulfilling and exciting education based on his abilities and strengths/weaknesses, and I want him to be confident in himself so that when the inevitable teasing DOES happen, he can think "Pfft. Your loss, not mine." and go on with his life.

And, having an explanation for inlaws who seem to think that I should just beat my child into submission every time I turn around is quite helpful. "He doesn't like water." "So? Pour it over his head, he'll get over it." "No he won't, it took me 15 months to even get him to put his feet in the bathtub after you did that to him the last time." "Yeah, because you didn't just keep doing it." "Any time that I tried, he'd have a meltdown and try to bang his head on the side of the tub." "Get out the belt then." *roll eyes*

:)

Anonymous said...

Even with an IEP, where I live there is no real subject acceleration, let alone grade acceleration...and gifted is kind of a joke for my 2E kiddo.

Anonymous said...

my son with aspergers is certainly disabled. He has a significant exec function disability. Yes those on the spectrum have different abilities and disabilities but they are still disabled. even those who loose a leg and learn to walk on a prosthetic are still disabled even though they have learned to overcome it.

Anonymous said...

all i can say is thank God my sons are in montessori. they are embraced for their differences and get to work at their pace and decide when they want to go to certain work stations and at what pace. they can do some things more remedially and others at an advanced pace. it is up to them. if they need help, it is there and if not, they can go on their own. it works very well for children on the spectrum. all schools should be montessori.....just my opinion.

Anonymous said...

I agree with you, Karen and the school that I am opening in our area will be highly inspired by the Montessori philosophy. The problem is that not all traditional Montessori schools are welcoming to those on the spectrum. My son has trouble sitting still and is very loud, even when he thinks he's whispering. He is orally sensory-seeking and puts a lot of things into his mouth to explore them. When we did our interview for our local Montessori school, they said that he would not be a good fit for their school because of his "odd" behaviors.

After looking up some things online, it appears that there are many traditional Montessori schools across the country who shy away from kids on the spectrum because of their stimming (both physically and verbally), their misuse of materials and their difficulty with instructions. My son had absolutely no desire to imitate the instructor as she showed him the lesson... and one of the key points to strict Montessori schools is that you SHOW the lesson to the student, with as few words as you can manage, and you have them "copy" you in order to complete the lesson on their own.

That's awesome that your local school was accomidating for your son, but unfortunately (just like the IEP issues across the country), it doesn't happen everywhere.

Anonymous said...

I always say, my son doesn't have a problem, it's society that has a problem with my son

Anonymous said...

Erica you make a perfect point, ive been trying to convey that same thing too ppl, if we get rid of the diagnosis we cant get help either. I wasnt helped as a child I was written off as different and lazy. You also make a perfect point that parents want gifted kids but the thing ppl dont understand is that most gifted kids are learning disabled, we have poor grades and ppl assume that you are stupid and lazy. Alot of parents have gifted kids but its hidden behind autism, even kids with severe autism can be gifted. Thanxs for making the point. Your right its selfish that ppl would hide disability bc it keeps us from getting help. Ppl with aspergers arent just a little different, we have completely different brains and if we dont show it we cnat get help learning. I graduated hs with a 1.9 gpa bc I couldnt learn, but I can draw realistic faces and compose piano music even though I dont know theory

Anonymous said...

As long as it is a diagnosis or labelled based educational system you'll need the 'disabled' label. It has been proven that in times of recession governments change definitions in order to cut resources! I think that this piece forgets the fundamental issue of the Aspie meltdown, which is definitely not controllable for the Aspie. It is debilitating!
8 hours ago · Like · 4 people

Anonymous said...

Eleanor exactly! ppl act like we can control it but not always, panic and anxiety can really bring us down

Anonymous said...

It is absolutely a disability. I get tired of the school telling me how smart my son is. I know he's gifted, but right now I would rather he be average with no meltdowns and no anxiety! Being smart, focused (at times), and detail oriented can be silver linings, but I think my son would give them up in a minute to feel calm and happy.

Anonymous said...

Oh, I agree with all of that. Like I said, I don't want to change my son at all. But he does have an IEP which helps him get enrichment in the courses he's already mastered, it gives him extra time to do things that he's struggling with, and it gives him a chance to work on things like over-literalization and such. A good friend of mine said that her 8 year old Aspie daughter was just learning about compound words, and she was having a horrid time conceptualizing the fact that a "notebook" is not a book filled with music notes, etc. It is those few things that need to be considered on an academic standpoint, and as an Exceptional Learning teacher (which covers everything from severe disabilities to the gifted and everything in between), I know that if the "label" would ever be taken OUT of the DSM, the school systems would no longer provide the unique educational opportunities for these children which will help them excel through school, build confidence, and be able to live a very fulfilling life as an adult.

I do agree with the difference between the reframing as a disability and reframing as a different *ability* -- and I feel that way about most learning disabled kids. The strengths should be highlighted and the weaknesses should be taught according to the child's strengths. A student once had an affinity for dinosaurs at the age of 5. Could recite every single dinosaur as well as what time period it lived in, how big it was and if it was a herbivore, carnivore or omnivore. We used that strength to teach him his alphabet. By taking the different names of dinosaurs, along with a picture, and a Montessori-inspired movable alphabet, we had him copy the name using the single letters and with each letter he matched, we told him what it was and the sound it made. He knew all 26 of them in a very short period of time. Making an "A" puppet that was shaped like an Astronaut or a "K" that looked like it was kicking would not have helped him in the least, although many typical students are then able to put the letter together with the sound by that approach.

The key is definitely to use the strengths to build upon and, in cases where necessary, overcome the weaknesses. The key should ALWAYS be to help the child succeed and live up to his or her full potential, no matter what the potential is. The problem remains with the parents who wish for their child's potential to be social based where it may not ever be. Maybe the kindergarten dinosaur lover will grow to be an excellent paleontologist. Maybe he will find another unique interest as he gets older. But we as parents, educators, and counselors should be much more concerned with helping the child fulfill his or her dreams, just like we would any typical child. We just have to remember that the dreams may be a little different than what we may expect and that the education and confidence that will foster the ability for the child to reach for the stars is going to be different from those NT children.

If it would, in the future, become just a "personality trait" as compared to other personality types, the aspect of helping the child learn in a way that is natural to him may be lost.

So no, I don't think of my son or any of my students as "disabled" in the meaning that they cannot achieve what others may be able to, but I do know that they learn differently and with the beaurocratic and political nature of the public school system across the country, they NEED that label, from an educational standpoint, in order to have those educational needs met so that they can reach the potential that they all have inside of them. :)

Anonymous said...

Jennifer Jones Calling people a certain thing to make them feel better about themselves is not doing much. Helping raise awareness is the only way to get others to understand all people who are diagnosed with anything. It is about those of us who are touched by something sharing with others. Changing names won't help anyone treat someone better. Learning about how special you or your child is will.
17 hours ago · Like

Anonymous said...

Eleanor O'Keeffe McSherry It depends on the perception of the term, Aspergers. I agree to a certain extent but having just spent three years looking at how we medically label and the theory behind it, I came to the conclusion that the perception of these labels are a result of 'political will' and society. Until that is resolved it doesn't matter what we want or say as the majority, at least in a capitalist western democratic society, will always have the definitive say in how the terms like Aspergers are used. As in the case of the marginalisation of people with 'labels', there is evidence to show that society thinks it is acceptable to label, as it is a way of controlling services, who accesses them and how much they need. The proof in the pudding is that now in a time of recession vital services are being cut as a result of lack of money and also medical definitions are being 'reviewed'. It might not be what we want or like but the fact is that in the educational system you need to get assessed to get help with or without a disability (my thesis will be going to be printed after September - hopefully). The reality at the moment is that currently in Ireland because my son's teachers were proud of him and boasted about his progress he is due to have his resources by one third, just as he is about to go to secondary school. This is even with six professionals asking them not to. I have already been told that he might have to drop subjects because the mainstream school will not be able to deal with him! This is the reality unfortunately. I don't agree with labeling but i think we're stuck with it until society is willing to accept difference...this also includes all people with disabilities, illness, mental illness and people with identity issues.

Anonymous said...

I really liked the article, and the very cool blog

Anonymous said...

My daughter as I see it has a disability. Sure she is in special ed. But we are poor people. We cannot afford anything extra. She is literally exhausting to my husband and I. My husband had a bone marrow transplant and is disabled from that. She runs us ragged, has temper tantrums, gets in fights at school and fights with us on a nearly constant basis. This is not a gift.

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers 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. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

Click here to read the full article…

How to Prevent Meltdowns in Aspergers Children

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 child is totally out-of-control. When it ends, both you and the Asperger’s 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...

Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers 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 to read the full article…

Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

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 Aspergers 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…

Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

Click here to read the full article…

Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes. The hardest part is you feel like you’ll never actually get to know your child and how he/she views the world.

Click here to read the full article...

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