Table of Contents
Listed chronologically, oldest to newest. In my opinion, the best articles are the newest, and are thus at the bottom of the list.
My Position on Lovaas-style ABA (Applied Behavior Analysis) editorial Warning: Very blunt; many are bound to be offended
What's the Difference? Exploring AS and autism
Introduction to Autism and AS: So your child was just diagnosed (understanding the autistic/AS mind)
The Story of Shane:
A tragic tale
Experiences with the Pittsburgh University autism study
Build the Autistic,
Don't Tear Him Down: A clarification of my opinions regarding
teaching autistics how to live
Prejudice: My Experiences at Aventis Bio-Services Updated 22 Oct
Proponents Attacking Autistics: Showing their true character
These are so
much in line with the message of this site, I just had to link to them.
Envisioned as a companion
to this site, the Autistic
is a place for parents, professionals, autistics, and anyone else
interested in autism spectrum issues to get together and discuss how to
parent autistic spectrum kids (AS, autism, PDD, et cetera), and to
overcome the various barriers to development that come with autism,
while celebrating the wonders of the autism spectrum. This is not
a place for the Cure Autism Now! folks... there are enough places like
that on the net already.
Autistic Boy Dies During Controversial Treatment
About this page
This site is no longer under development. I have not added to it in years, and I do not think I will be doing so again at any point in the near future. The reason for this is simple: I am no longer involved in advocacy in any capacity. My perseverative interests do not last forever; typically they go a few years, and then I become interested in something else. That is what has happened here.
This site is presented not as a finished product by any means, but as a suspended work-in-progress that remains in its most recent state of development. It remains online because many people still write to me regularly and express thanks for what I have written here, which tells me it is still helping even though I haven't added anything to it in a very long time.
After some thought, I have removed the email link at the top of this page. It is still valid, if you have it, but I don't really read email anymore, so any email to me is more than likely never going to be seen.
Be well everyone.
When a parent embarks in a "war" on the autism beast, it soon becomes clear that the total destruction of the beast is the ultimate goal. Even if the parents know that autism is not curable, the total death of the autism beast is a wish they keep in the back of their minds. They can imagine nothing less, so great is their hatred of the beast. As they see it, destruction of the autism beast would mean that the normal kid that they expected to have, that they sometimes thought they had before the child "regressed," would be freed, and all would be well.
When one has that mentality, life becomes a series of battles against the beast. War is hell, they say, and I am sure that parents that are prosecuting this war against autism would tell you that hell is an apt metaphor for what they are going through. So would the kids, I am certain, say that, if they could.
The problem with this vendetta borne of hatred for the autism beast is that you cannot wage a war on a part of what the child is without also hurting the child. No matter how much anyone wants it to be so, the fact is that autism is not seperable from the whole of the child; there is no "shell" of autism surrounding an innately normal child. There is no seperate entity called "autism" that, if it were destroyed, would allow the child to be normal. Autism is a function of someone having an autistic brain, and you cannot fight the autism separately, any more than you could fight the femaleness of a girl but not hurt the girl herself.
Autism fools people. They think that because they (the parents) are (ostensibly) normal, and that since their child may have appeared normal for some time, that the child really is innately normal, and that he was normal, until autism struck. Science has shown us that this is not so. Infant monkeys were given specific brain injuries in a part of the brain associated with autism, and even with those injuries, the monkeys appeared to develop normally-- until a point. When the monkeys were developmentally ready to start using the part of the brain that had been injured, they then began to act very differently than the normal monkeys of their brood.
Autistics are not monkeys, of course, but the parallel is strong. A part of the brain can be abnormally configured prenatally (before birth), and when that child is born, he may seem quite normal, since the abnormal part of the brain has not been used yet. When he develops to the point where the abnormal part of the brain is activated, he then may appear to withdraw, to lose interest in others, and to show other autistic traits that had not been seen in that child before. There was no beast that came in the night and hurt the child-- this is, in fact, the child that was always here.
The hatred of the autism beast, and the overwhelming desire to defeat it, leads many parents to think that accepting the autism and parenting the child as he is, would be the same as giving up, or giving in to the beast. It would be seen as failure. Peer pressure from other parents would be strong; normal parents seem to be very much concerned about how they are perceived by other parents, and none wants to appear like he or she is not doing everything possible to slay the beast.
When one is stressed beyond belief, and has feelings of guilt for having had an autistic child, and has the "war" mentality, it is almost impossible not to project their own feelings of hatred for autism onto the child. Parents describe their fight against autism, very often, as the child's fight against autism, and they think that anything they do to fight the autism is almost automatically the best thing for the child. The child, though, is not waging war on autism; that autism is simply who he is. The hatred his parents have for autism, though, often prevents them from ever seeing that.
A "war" mentality is not required to help an autistic child. There seems to be a peculiar idea out there, that the only alternative to full-on war against autism is total neglect. That is what is known as a false dichotomy. I have not met any autistic advocates that promote total neglect. I, for one, am glad that I am able to communicate, and I would certainly not deny that to any autistic. That is just one example among dozens.
Calling an end to the war does not mean giving up on the child-- not by any means! It means recognizing that the child is not normal, that the child is not going to be normal, and that this is okay. It means loving and appreciating the autistic traits as well as the normal ones, because they ALL are part of who the child is. It is folly to pick out the normal traits and say that "these are who my child is," and to pick out the autistic ones and say that those are just the symptoms of autism. The autistic is the sum total of all of his traits.
I advocate parenting the autistic child, and doing everything that is humane and appropriate that helps the autistic child to learn and develop. I advocate that parents act to help every autistic child to be the most capable autistic person that he can be.
It's not "giving up" to stop trying to defeat the autism-- it's accepting the child as a whole. If people worked on helping autistic kids to learn in ways that are designed for autistics, and in finding ways to get around the various barriers that autism can present, then I am sure that autism would not be as disabling as it often is.
People have often written to me and said that it would be great if their child was as high functioning as I am... that if their child was like me, they would not necessarily want to cure him, but that it is different with their child. Acceptance of autism is fine, in other words, if the person is not severely disabled by it, but for those that are more disabled, curation is warranted as a goal. I have to wonder, though: Does anyone really think that having his parents accept him for who he is, for what he is, ceases to be important if that person is "lower functioning?"
I can tell you from experience that being allowed to be what I am has been vitally important, and has allowed me to function in normal society to a much greater degree than I would otherwise. Why would that not also be so for people that are like me, but who cannot talk, or take care of themselves? Is there really a point at which acceptance of who someone is would not benefit them?
The first seven articles were written before I realized I am
more high-functioning autistic than aspie, so in them I will often
to myself in that way. Regardless of which label I use, the
message in each remains the same.