Why is society only focusing on mild autism?

Question

What about those that have severe autism? The ones that cant speak at all, have random fits of rage, have seizures on a regular basis, etc? Why are we only seeing the autistic kids that can talk and play with others? Why dont the tv shows and books ever show or talk about the ones that cant do anything but grunt and groan all day long? Or the ones that that have to be physically restrained because they started ramming their head into the wall for no reason whatsoever? Its disheartening to see a 13 year old with the mind of a 2 year old and we see absolutely nothing in periodicals, videos, books, etc that gives us any help whatsoever.We cant even find a book on dealing with severely autistic males going through puberty. I rather doubt that they are shipped to Australia at the age of 11 so there has to be information somewhere. What gives?

Answer 1

My neice is almost 11 and is MAYBE up to a 2 year old level. She is finally out of diapers but still has BM issues. She rarely bangs her head anymore but she does kick holes in walls.

There are many reasons there is much more focus on mid- to high-functioning autism.

One reason is that most people with autism are much higher on the spectrum. As much as 80% (data is hard to find and varies widely) of all kids diagnosed with autism have Asperger's (High-functioning). At the support groups I went to I don't think I met one person who's kid was lower functioning than my neice. At the seminars, may 5 to 10% were parents of children at or lower than my niece.

Another reason is the people love the "overcoming all odds" kind of human interest stories. So the junior high kid that made a record number of points in a basket ball game gets on national news.

People also love the "savants." Kim Peek is a man who needs help dressing himself, but mention where you are from & he will site you all the vital stats of your home town. He also knows many other lists of info. He was the inspiration for the movie "Rainman." (Although the movie was a rediculous exsageration)

Also, if you look at the history of autism, before the 80's it was widely thought that the mother was responsible for causing autism. And our society aslo had a tendency to ship people like this away. So up until recently, such kids were institutionalized. That is what was expected of the parents. So there was not demand for books on dealing with adolescent severly autistic kids.

I have a cousin who might know something. I'll get back to you if I find something.

Answer 2

As a special education teacher of students with severe autism I agree with you there is not as much attention put on these kids. Which a lot of times makes parents feel as though they have done something wrong the school has done something wrong or they have not found the cure that some people like to bring on tv. They like to place a child that is higher on the spectrum and give them a treatment and then say that it can work for all children well that is not only false information it disheartens parents when it does not work for their child who is lower on the spectrum. These are great kids to work with and no two are the same but there are common ground among them and it is worth reporting. It would help a lot of parents that are in the same position.

Answer 3

To be honest, if you look at what's out there, it's usually the larger organizations who are solely focused on the negatives of autism. Many of their fundraising videos only show autistics in the most pitiful light (unable to communicate, toileting issues, extreme behavior). Of course, they have an agenda, and it isn't to paint autism as something good. My point is, there is way more publicity focused on the more extreme behaviors associated with autism. This serves no purpose other that further propogating false stereotypes and spreading more mis-information. There needs to be more balance in explaining what autism is. Perhaps you are disheartened to see another side of autism that doesn't quite capture your situation.

Overall, there is a global misunderstanding of what autism is. Being a spectrum disorder, each person falls on a different area of the spectrum. On one end of the spectrum, people are mildly affected and get more extreme towards the other end. This seems to be too much for people to understand-they think every autistic is like rain man. Their world doesn't make sense if everyone can't be categorized. Until this ignorance is conquered, there won't be much more help or understanding for ANYONE on the spectrum.

Answer 4

Actually, a rather big news story a few weeks ago was about parents of a young autistic man who used a cattle prod /electric shock to stop his violent head banging. They had been to court and appealed as the group home their son is in would not use it. I would assume he was severly autistic.

As a mother of an Autist, I was becoming more and more pissed off at shows like Larry King, The View, Oprah that did their obligatory autism show last month (for Autism Awareness Month). Seemed to me they all were about mildly autistic kids and what saints their parents were. After trying to look at these programs from a general public view, I understood why they did it that way. It was about letting the public get some general knowledge of autism as a whole and the fact that it has reached epidemic proportions. There isn't the time to put 250+ diagnosis of the spectrum on the show.

For those of us like you and I, that have autistic children, this sucks. But as you know, no two autists are alike, so how could they (media) possibly document them all? I guess for me it is trying to learn tolerance...

Best wishes!
PS. In the book Autism for Dummies there is a section on puberty and the autist.

Answer 5

Yeah... kids like that are not running around on tv shows. They are in behavioral crisis units being treated for this behavior that you talk about.

For one, it's a small population in relation to the enire population which means 2 things.
1. Low interest nationwide
2. Low demand (therefore low supply (tv shows, etc)

Secondly, it's easier to be politically correct or include the easy-to-deal with autistic population, so they do it where they can... who wants to deal with a kid ramming their head into a wall for no reason?

There are behavioral stabilization units with comprehensive programs serving these individuals... some pretty good places, some not. Also, refer to Journal of Applied Behavior Analysis for studies on these types of kids... its full of articles.

Answer 6

From my experience, there is a lot of media attention placed on those few autistic individuals with savant abilities. It gives parents hope. There is also a lot of research looking for a "cure". Again, it gives parents hope. They should have hope, but they also need to realize that many, many children with autism do wind up functioning in the severe range. It's hard for parents to accept. Parents of children with autism are BIG advocates. They are well organized and well informed. Unfortunately, for many, not all of their children will reach an independent level. Can't blame them for trying. What else can they do? They refer to autism as a spectrum disorder. What's the difference between someone with severe autism and severe mental disability? Just a label. The ability to function is the same. Autism is a nicer word than mental disabliltiy.....it lumps you in with children that are savants, kids with aspergers......not with "retarded" kids. It's important to get past labels and focus on functioning. Helping each child reach their personal best.