`I DON'T WANT TO BE AUTISTIC ANYMORE'

I really dislike the whole “spectrum” diagnosis of autism. I feel that a child who has accomplished as much as Josh doesn’t need the label of a serious disorder. Dad, my understand is that your child has more severe difficulties. Do you think a child like Josh needs this diagnosis? Obviously, his family felt it is helpful - more to the story than “the story”. I feel that high functioning kids may not benefit from a diagnosis for what we just used to consider “unique” or “a little different”.

I must respectfully disagree. The article stated was labeled Mentally Retarded as a 10 year old. It shows with the proper services and help, SOME autistic children can grow up to be functioning adults. The article also pointed out that he is still shadowed by his special education because there are times he needs it. I don’t think you can look at a success story then judge that they did not need the help or the label. Josh will always be autistic. He is just able to function better because he received the correct help when he was young.

I agree … the bigger issue is our human tendency to perceive people through those labels and impose our limits on them (and on ourselves). Often, though, knowing what will work for teaching and doing it makes the difference between a walking label and a human being.

A point made by Claire Sainsbury, a very high-functioning lady from the UK is that being just a step onto the Spectrum is in many ways more difficult than being profoundly autisitc (like my boy). One of the most important aspects of having a formal diagnosis is being able to identify with a group of pers for mutual support as well as being able to get beyond the sense of “alienism” that many HFA and Aspies feel.

I understand the point about labeling creating pre-determined outcomes in the minds of those wehose eyes are closed. It is my opinion that that particular issue is best addresssed on its own merits.

I didn’t read the article, just the portions Dad posted, to read about the retardation label. I just know that there were no services for my child, no peer group, no point to an autism diagnosis. My son has gifted intelligence, but could not read. Psych testing shows a huge discrepancy and a Non Verbal LD suggestion. NVLD is not a medical diagnosis so you end up on that autism spectrum. Pointless for us. Public special education had nothing to offer him where we live, except a remedial education without the possibility of graduating high school. So we left many ignorant “professionals” behind and did what we needed to for our son. At this point he has been wonderfully successful because of his hard work, a private ld high school, two private counselors and two very dedicated parents. He goes forward in his life as a bright, capable person who has some special needs. For us the diagnosis just gives him a label that few will understand or care about. For me an autism diagnosis just means one more way to negate all of his strengths and focus on aspects of his brain that are beyond our understanding at this time.

It hurts me to hear what a terrible time you and your child has had because of lack of qualified professionals and educators who want to understand your child. I do now understand where you are coming from. I can see how you believe a label doesn’t help. But, as you have expressed, your son’s label doesn’t really fit his strengths and weaknesses. It is just the only label they have available because of the the way the DMSV works.

I do agree that labels don’t alwasy help because the proper services and help must be given. That part breaks down alot. Especially in the public school system. And, I have just found out, there are alot of professionals out there that don’t do their jobs properly. There are also alot of ignorant people around that cannot understand that just because someone doesn’t do something exactly the way you do doesn’t make them unintelligent.

I wish you and your family the best.

Is it better to excel in the Special Olympics than to participate and be weak in high school sports?

Is it better to have the lead in a play in a theatre group that caters to the mentally disabled or a small walk on in a local theatre group of neurotypical folks

My gut reaction to this is that we need to listen to Josh and let him choose to be mediocre in society if HE would prefer that to excelling with the accomodations given to him with his label

Isn’t that what he is saying?

That’s what I’m hearing

This is a very complex issue, and one that could have point-counterpoint volleys until we are all toothless in nursing homes and still consensus might not be achieved. While I agree with what Josh has said (and you have paraphrased marycas) I also agree with what Claire Sainsbury has written (from her experience both as an Aspie as well as her tenure working with HFA children in the UK).

In a perfect world parents would be effective advocates and proper mentors for their difficult children, society would not bully or otherwise oustracize those who were significantly different from the herd, and the schools would be outfitted with all the resources, both financial and human, needed to give each child what they need to thrive to their fullest, and labels would be completely unnecessary. In the imperfect world in which we currently reside, labels represent a very necessary evil to point us, educator, parent and child alike, towards those services which have shown the promise of progress. Yes a label like autism spectrum can be self-limiting because of preconceived ideas about what that entails (and the most recent revelation that the overwhelming majority of autists are NOT MR is the latest misconception being directly challenged by true investigation). Buteven when a label comes with baggage it may also do some good, if only because it would give a HFA or Aspie a chance to see that they are not alone, they are not at fault for their inability to fit in with the typicals and that they have people who have enough in common that they can find the peer support even if it is only online.

In Josh’ case, we have no way of knowing how much assistance and protection he got when he was younger that allowed him to reach the point he is at now - wishing to step out of his label and join the world of the herd. The single most common thread in life for those at the upper end of the Spectrum is the harassment they face from us typicals, peers, professionals, family and society at large. If using lavels which are imperfect fits and have limitations presumed attached can reduce the abuse, if only by allowing them to fall into protected categories, and we exercise said protections, they may be worth maintaining.