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Who Speaks For Autistic People?

My mind goes round and round on this one. The medical professionals, who by and large are NOT disabled themselves, get to cobble together the DSM that spells out which problems are considered conditions and which are not. And it bothers me that it's starting to look as though Asperger's is going to be eliminated from the next edition.

Call me paranoid, but what if we just eliminated all the well-adjusted and verbal schizophrenics or dyslexics from their little DSM categories and left ONLY the ones who couldn't advocate for themselves or others? What kind of advocacy would the "real" disabled people be able to cobble together? You see where I'm going with this.

Now, I *totally* and completely get this idea that one person might not be "as disabled" as another. Or that maybe the person on the more functional end of the spectrum oughtn't qualify for aid when dollars are tight and we need to concentrate on those who are more severely affected. But the truth is that being autistic does not HAVE to mean life in an institution. It can. It doesn't HAVE to mean being "disconnected" from others. It can.

But you see, not only are we dealing with disability, we're also dealing with personality mixed in with the disability. Doctors and others, in diagnosing, have to tease out how one may affect the other in deciding who gets what label. And hey! I get that autistic folks generally may be more introverted as a group and that there's a fine line between "introverted and weird" and "disabled."

I have several children who manifest their disabilities in different ways. I would LIKE funding for my oldest autistic child who is unable to keep his thoughts to himself and/or can lose his temper royally. It's so way far beyond the "just teach the child to mind" category that it isn't even fair to comment upon. Suffice to say we are doing all we can. This child, without special help, will likely bounce from one low-paying job to another and have difficulty with his relationships. Even with special help, he's got some troubles. I'm truly sorry. I'm doing all I can for him. But eliminate the PDDs from the DSMs and we have a MESs.

Elfie McMelfie will likely just need a bit of sheltering. Please, no jury duty, as just the very thought that someone else isn't a Christian is enough to shock him to tears. The eternal Hell that awaits them is too frightening! (IMO that doesn't make for an impartial juror. I love him, and it's nice that he cares about people so deeply... and maybe more of us should... but just saying.) Please, no big crowds. No rock concerts. No putting any book on top of the Bible. Even anther Bible, unless it's the King James Version with no typos in it. You've been warned. Elf should be ok if people understand his quirks and let him work with a small group of folks doing the same thing each day. He will be ok with just a bit of understanding; he really will.

But Woodjie. Poor little guy needs LOTS of help! This fellow is leading me down a path I have never travelled. I am not sure how to help him. I do know he needs lots of help to succeed. I know he would probably want other autistic people who know a bit better about what life is like for him to speak for him rather than a doctor who sees him for 15 minutes. For that matter, I know that little fellow well and would be the very best advocate I can be for him... but I'm still Mommy. Still see him with the Mommy heart. Certainly if other people with the "autistic" label are advocating for autistics in general, it would be better for Woodjie.

Then again, too bad we have to have labels. Too bad we can't have a number and say well, Woodjie's life skills are at a 10 out of 100 (100 being typical three-year-old, going potty but needing help with snaps sort of thing). Then we could more closely advocate between labelled groups. Certainly my child has things in common with a Downs Syndrome child, and things NOT in common. But yet we seem to rally people in our own organizations without looking to the commonalities between conditions.

Where am I going with this? I don't know. Just wanted to chat with you today about the fact that having the more "functional" people losing the label soon probably will not bode well for those remaining. Probably it will reinforce stereotypes about autistic people as well.

If you have any thoughts on this, I'd like to hear them unless your surname happens to be "Savage."


  1. Wow that article from Savage was really shocking and disturbing. It's hard to believe there are people out there who are not only that stupid and insensitive, but we are paying to hear them talk. Sad, sad, sad.

    Re: his comment on minorities and asthma--I'll be sure to tell my bi-racial son (part African American) to cut out the fake coughing. He's had asthma since he was 4 mos old and he's a minority--he must be faking.

    Mrs C.--so sorry to hear about these proposed changes to the DSM. It's a shame that we need a book to define or list disorders and diseases. I guess we have to have a place to start, but I wish there was a way to diagnose and get help that was more flexible and individual. What is really scary is how much harder it will be to get a diagnosis and treatment if America goes the way of socialized medicine. Children here wait so much longer for very limited help, if they ever get help.

  2. The proposed changed to the DSM concern me too. There are also a number of people who I follow on twitter and talk too who have the dx of Aspergers and they are also concerned. I have learned a lot by "eavesdropping" on the conversations they have with each other on twitter and it has given a better understanding of my own son.

  3. Well, that's lovely. I didn't know about that.

    I got tired of the doctors my son was seeing because they would see him for 15 minutes and then try to change everything around.

    Chaz has a major anger problem and gets upset so easy! When he gets in trouble or goes into time out, he loses it BIG TIME.

  4. Mrs. C,
    We have had the opposite problem. I could get lots of help for Christian when he was small but after he turned 3 it all vanished. No one wants to give him therapy because they say he hasn't shown any substantial progress. He was dropped from speech therapy in 1st grade at public school even though he was totally nonverbal and had no true way of communicating.
    On the other hand every one is eager to work with Tyler because he makes a lot of progress and that makes them look successful.
    I struggle with the whole labeling of autism personally. It seems the media seeks out those who are super bright and high functioning therefore that is what most people associate autism as. We often get comments from people who think they know so much about autism because they some savant on Oprah and wonder why we aren't doing more for Christian because surely there is an autistic genius in there somewhere just dying to come out. It often hurts more than it helps us.
    There are days I wish we could just get rid of the labels and give each child the help he needs based on the symptoms.
    Sorry for the long comment!

  5. Bonnie, I really hope people don't take him seriously, but it sounds like he gets lots of airplay and attention. I have two minds about even bringing it up, but just saying what's "out there" is sometimes enlightening, eh?

    Thank you, Rose. It is something to be concerned about. I can't imagine the DSM could get changed by political activism... oh. Well, I don't think they have homosexuality listed as a deviant sexual behaviour any more. Wonder why?

    Virginia, I KNOW there is a lot you and I don't blog about. You have my understanding and hugs.

    Bronwyn: We've gotten a bit of understanding with G. So far. But Elf, since he has not manifested a learning disability, well, the PDD NOS diagnosis means he needs no special help. (??)

    We started to get some difficulty with Woodjie even in First Steps. I started to hear the same argument YOU did... that he makes no improvement so might as well spend our resources somewhere else. Thankfully we were able to keep the twice-weekly speech therapy, but I know I'm looking down the road at a situation similar to yours. And I am unhappy about that.

  6. I wish I hadn't read that. It saddens and outrages me that people actually really think like that.

    And big hugs. You are doing a great job.

  7. I wish services were truly individualized and based upon functional status rather than diagnosis. Marissa will need supported employment. She doesn't qualify. Lacking that, she will be chronically un-employed or under-employed with a lot of free time on her hand. Do you know how much trouble a person with poor executive function can get into with loads of free time? An overwhelming percentage of adults with FASD are confined in prison, a mental health facility or a drug treatment program... supported employment would be cheaper.

    Sad really...

    And, what am I offered? Taking Marissa to court and trying to have her declared incompetent so that she can live in a group home and receive a check every month. Uh, I may be making a mistake, but we aren't going there.


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