Saturday, May 30, 2009

One Mom's Look at Asperger's

One Mom's look at Asperger's

This was not written by me, but I felt I should pass it along to anyone who might identify with it or have comment on its contents. It was posted on a homeschool message board by a mom of a child on the Autism Spectrum. I thought this was a very well thought out, understandable explanation of what Asperger's Syndrome can be like.


Asperger's Syndrome is a neurological condition and can affect anything related to the nervous system including cognitive and sensory functions. Nobody knows what causes it yet, and it manifests somewhat differently from person to person. It is considered by some to be on the "autism spectrum", and by others to be a separate disorder that has many similarities to autism.

By definition, a person with Asperger's has an average to above average IQ (if it's lower, they get a different diagnosis). People with Asperger's Syndrome characteristically have deficits in social functioning, including odd and inappropriate behaviors, difficulty with non-verbal communication such as body language and facial expression, and can often have a hard time understanding non-literal language such as sarcasm, idioms and figures of speech.

They can also have difficulty understanding the ebb and flow of conversation, tending to "lecture" rather than converse. (One nick-name for the syndrome is "little professor syndrome" because they're very smart and tend to speak pedantically.) They usually have very narrow, focused interests, often in unusual things (sometimes referred to as "obsessions" or "passions", depending on one's attitude about the condition).

Often people with Asperger's also experience the world differently with their senses than most people around them (sensory integration disorder). Again, this differs from person to person, but an Aspie may have an aversion to (or conversely may crave) certain types or intensities of lights, colors, textures, touch, tastes, smells, sounds, and so forth, or may have difficulty sensing where their body is in space, making them fidgety and off balance. Many Aspies also have difficulties with changes in routine because they are already dealing with so much that a surprise can really throw them off their precarious mental balance.

Aspies also often have comorbid conditions such as anxiety, depression, seizures, tics, OCD, ODD, PTSD, ADHD and others that can be diagnosed and treated separately, but which often go undiagnosed because they are just attributed to the AS.

Behavior in an Aspie can be rather complicated to unsnarl, as sometimes "bad" behavior can be a reaction to a painful sensory stimulus, an overloaded nervous system, a "fight, flight, or freeze" response triggered by a social situation they perceive as threatening, or just developmentally delayed impulse control. Developmentally these kids can be all over the chart--it's not so much DELAYED development (though there usually are delays in some areas) as it is UNEVEN development

For example, a 12 yo boy might test out at a 22 yo level in some things and about a 5-7 yo level in others, and all of these can vary depending on whether he's hungry, tired, excited, calm, etc. It can be very confusing for the adults in the scenario when they're dealing with a 6 year old child who can multiply multi-digit numbers in his head and read at a high school level, but isn't yet potty-trained. We tend to think of skills developing more or less in a pattern so that if a child can do X, we should be able to also expect him to do Y, but with Aspies that all goes out the window and you just have to really get to know YOUR child's developmental pattern and roll with the punches.

And sometimes "bad behavior" is just plain old bad behavior too, and the proper response is discipline. But discipline isn't going to help if the problem is sensory. If you take a child who is in pain, say from a too-bright light (which you don't notice, because your nervous system is not oversensitive) and beat him for being in pain, it really only makes things worse, if you see what I mean, and will probably escalate the behavior. And if he is really developmentally much younger than he is in some area, such as impulse control, then it's not really fair to expect him to be able to perform at the same level as other kids his age, and no amount of punishment will speed up the development process, and it may in fact impede it.

Aspies often come across as either the "angel" or the "demon" behavior-wise. This is because different people react differently to being overwhelmed, and Aspies spend a LOT of time feeling overwhelmed. The two most typical reactions for ANYONE who is overwhelmed, not just Aspies, are to either withdraw, or to fight back. The withdrawers get labeled as "good" because they tend to just sit there and be quiet, whereas the fighters get labeled as "bad" because they tend to pitch humongous, out of control fits (aka "meltdowns"). But generally both behaviors are indicative of neurological overwhelm, and it's best to help your child find a happy medium where they are cheerfully engaged in what is going on.

Aspergers is sort of a buffet-style diagnosis, which is one reason it seems so different from person to person. Something I think many people don't realize is that since there's not an actual medical test for Asperger's Syndrome, the diagnosis is really more a way of categorizing people according to behavior than it is an indication that some particular, specific thing is anatomically different. There probably is a consistent anatomical thing (or things) going on, but research hasn't nailed it down yet. So it's a very subjective thing, not like, say Down's Syndrome or Fragile X where you can look at the chromosomes and say "yep, he's got it".

parents should keep in mind too when reading over things like this is that the intensity of the symptoms makes a big difference. A lot of "normal" kids are a little socially awkward or have unusual hobbies, most kids throw tantrums, and some are a little oversensitive to certain flavors or whatever. It's not usually considered a "disorder" unless these "normal" behaviors are taken way to the extreme--to the extent that they interfere with the "normal" functioning of a person. If it's causing serious issues in life, it may be a diagnosable disorder. If you can compensate fairly easily and work around it, it's probably just a personal variation on normal. Everyone is different, and something that we seem to be losing touch with in our current society is that THAT IS OK.

written by Amy Beatty, WTM forum


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