Aspies For Freedom

http://www.newsday.com/news/opinion/ny-o...0355.story

Don't try to make autistic kids 'normal'

It seems nowadays that autism has become a center of controversy. As an autistic person, it disheartens me to see that most people lack a clear understanding of what autism is like for their children, peers, students and so on, yet they claim to know what is best for us.

Autism is called abnormal and a disorder only because neurologists operate under a Philistine's notion that there is "normal" within all things, and that only their arbitrary definition of "order" is valid.

An autistic person often is said to think outside the box, or deliberately cross the line. I can tell you from experience that we don't. To us, there's no box, there's no line. And we find neurotypical people absurd for complaining about something that just doesn't exist. This comes from the fact that many of us don't naturally develop intuitive thought and imagination, though once we learn how, we're quite capable of these feats.

I have been diagnosed with various autistic spectrum disorders. As I proved more capable than the charts predicted, the diagnosis was modified repeatedly, from PDD (pervasive developmental disorder) at age 2, to low-functioning autism when I learned to speak in sentences at age 4, to high-functioning Asperger's Syndrome when I was found to have an IQ well above average, to high-functioning autism when the Asperger's Syndrome diagnosis no longer fit.

This is a common experience for autistic people, but even more common is the idea among those of us who have found acceptance that we're happy the way we are and don't want to be "cured." The part about us that is especially different is that we don't process data via symbological means. In other words, we don't consider things to have greater meaning than themselves.

I had severe social difficulties from preschool onward, and by the time a term like "autism" would have had any meaning to my peers, most had already drawn conclusions, and would continue to do so.

My isolation, combined with a longstanding rift I had with my family, led to severe depression by age 9, which went undiscovered until I was 14 or so. Unable to express my emotions, I was placed in outpatient therapy for four years, which was enough to allow me to see my existence as valid. In all, I'd say that part of my life wouldn't have happened if I were better understood and wasn't persuaded that I was diseased, disordered or sick and in need of a cure.

Parents, educators and others who work with autistic people should take these words to heart, and continue to do all they can to work with autistic kids and teens, rather than trying to make them normal.

*beep* This is erkolos speaking

Some really good comments.

"My isolation, combined with a longstanding rift I had with my family, led to severe depression by age 9, which went undiscovered until I was 14 or so. Unable to express my emotions, I was placed in outpatient therapy for four years, which was enough to allow me to see my existence as valid. In all, I'd say that part of my life wouldn't have happened if I were better understood and wasn't persuaded that I was diseased, disordered or sick and in need of a cure."

Family ignoring people with autism.  It is the same with a hearing impaired person -- the family dog treatment when no one else in the family bothered to learn to sign or teach the child to sign.  They see that the autistic person does not respond the same as others so they just give up and ignore them.  

For some people it is just about a power struggle.  They can't make us behave in a certain manner or teach us the way they like to -- so they just ignore us or push us out.

I remember reading an article in a local magazine about an Asperger's "megaschool" that was being built and would cost the school district $80,000/ yr per child.  The administrators of the school declared that the money was worth it "because the end product will be a child indistinguishable from a neurotypical child."

I found this absolutely bizarre.  First, how do they expect to go about doing this unless they intentionally select the least impaired students?  And even if they do manage to create such a "product," is it really a good idea?  I remember reading a post on another AS board from a man who claimed he could pass for NT and had received a lot of social skills training as a child, but he felt dead inside from all of it, as an adult.  He didn't even know who he was, like he had lost his identity somewhere along the road.

I think an all Asperger's school is a cool idea (except for the issue of diagnosis-- who will be let in and who won't-- but I won't go into my rant here), but not one that has changing the child as its intent.

As far as modifying autistic behavior, the one trait I do think should be "therapized" is violent stimming or outbursts towards others. Self-harm is counter-productive and obviously harming other people physically, is wrong.

I have vivid memories of head banging in school.  The teacher knew my mother personally so she kept it quiet and told only my mother.  I remember my mother being furious with me for "behaving badly"... every single autistic trait I showed as a child (even the really classic things like head banging, rocking, insisting on wearing the same clothes for a year) was dismissed as "bad behavior."  When as an adult I read that parents often dismiss autistics traits in their children, especially daughters, I nearly fell out of my chair.  It is a power struggle, an offense that you're not a perfect reflection of them (since after all, isn't that what children are supposed to be?).

Sounds like Judge Rotenberg Center.

They won't take kids as impaired as that center takes.  I can't remember the name of the school though.

My mother actually told me that the reason she was no longer allowing me on the computer for more than half an hour was "because I don't have enough control over you".
I wouldn't dare to say that it's like this for all or even most families with autistic kids, but certainly for some of them, control does become a huge issue.  For those that really get messed up, they follow a weird pattern of overcontrol followed by utter dissmissal, ignoring the child like M mentioned, or even both overcontrol and dissmissal at the same time (For example, saying a problem you're having isn't "real" and then making up some ludicrious rule that's supposed to help you "learn to behave").
It's one of many things that comes about from the lack of understanding these families have about autism.  They don't understand their child and neither does anyone else; they feel ashamed and frustrated at not being able to change their child; and they feel like they "lost" the child they wanted.  It's all an illusion, but many parents never get over it.  If I were in charge of alotting money to autism services, I'd put a lot into educating families.  Stopping this sort of thing is very important to the well-being of all the people involved.

Interesting reading about the stimming, etc, and how parents want the "normal" child of their dreams.  I had a different experience - my father was a surviving twin, his brother having died during infancy, and no other children.  My mum, although one of a very large family, was brought up by her aunty and uncle, (who she called mum and dad) as an only child when her birth mother couldn't cope with all the kids.  Both dad and mum were brought up on isolated farms.  So their experience of "normal" was a little skewed.  I was their first child and they accepted everything that I did, all my little autistic traits, as "normal", to the extent that my NT sister had a problem in our parent's eyes, when she did none of them!  I think Judy is still a bit resentful of it, to tell the truth; she's the most NT in our family.  My third and fourth sisters tend to be cousins; my third has a child who is Aspie, as well.  
So Judy was rather like the song about the lonely little petunia in the onion patch!
Alison

Then we should probably act as a "watchdog" group in this case, and keep an eye on it as best we can.  What do they need $80,000/year/child for anyway?

To all things in life, there is balance.

INSPIRING WORDS:
Life is a series of letting go's- an "infinite" series of letting go's.
All things in life are given us "on loan".
"Stand face to face with life, learn to let go, and whatever comes our way- success or failure, joy or sorrow, support or betrayal, light or darkness- it all blesses us."

I don't know many Autistics who would find the ability to have an imagination a feat. If anything, it's the NTs who seem to have no imagination, relying on their fellow NTs to tell them what to think and do.

We must be dealing with two very different definitions of the word "imagination" here.  I'm quite familiar with the fiction-generating / idea-generating kind.  What's the other kind, then?

I think she is talking about the fiction/idea generating kind - In this case, applying it to thinking of "outside the box" decisions and actions...