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Re: [Autismlist] How the Autism Community Radically Changed in the Past 15 Years

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  • Tom Smith
    ... Nada. Nothing is happening. ... I could never figure out what the big deal was with the Me List . ... Apparently you re not the only one. The truth is
    Message 1 of 3 , May 1, 2008
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      --- Rose Alford <omlick@...> wrote:

      > I am just curious about what other forums you have found out there
      > these days.

      Nada. Nothing is happening.

      > I was kicked off the ME LIST years ago (well at least I
      > stopped receiving the postings) because my email address changed and
      > the moderator just could never get around to fix it for me.

      I could never figure out what the big deal was with the "Me List".

      > I have been totally out of touch though with the new goings on in
      > the ABA world. I am just too tired to care anymore about Autism
      > treatment.

      Apparently you're not the only one. The truth is these general
      discussions went round and round for 15 years on the net and folks have
      said everything they wanted to say. With autism, experience seems to
      be the only teacher.

      > In other words I became apathetic. Is the ABA push as
      > strong as ever?

      You bet. Now the behaviorists have a multi million dollar industry and
      use it to organize the parents. It's like feminism for crissakes.
      They even have a stranglehold in academic psychology thanks to all the
      money they are making off us. They're going to ride on the backs of
      autistics until the parents have had enough.

      > Did they ever duplicate the Lovaas experiment which
      > had about a 47% cure ratio?

      Never. Some studies found either no effect or even a negative effect.
      The studies that showed improvement showed very little improvement
      among very few autistics. It was obvious to anyone who has taken
      experimental psych in college that the Lovass study was a garbage study
      with too low a sample. The whole thing was a scam to get the school
      districts to fund it. Most everyone in the know knew that but
      rationalized that they had to get help some way. Plus like I said, the
      parents were misinformed and scared by FC rising and the behaviorists
      were just the ticket to stop that. The behaviorist's already a strong
      foothold in autism and were looking to better their position. FC could
      have knocked them out of the picture. Don't get me wrong, there are
      some very real problems with how the official FC people were promoting
      it, but those problems could have been rectified with more support.

      > What are they saying now? How are they
      > going to afford the long term care costs of the more severely
      > affected autistics like my son.?

      Well, that's one of the consequences of the parents going the early
      intervention route. Nothing has been or will be done to help the older
      autistics. In fact we have gone backward. The institutions that have
      been closed in favor of group homes had been getting better in
      preceding decades and were actually doing a good job. There's fewer or
      no services in the group homes so now what we have is them being
      "warehoused" in group homes.

      I'm 60 years old and I fought most of my adult life for these guys.
      What has happened is a heartbreaker. I don't know what to do. I'm
      sure many others feel the same way. Let's hope they don't feel the way
      I do when they are 60 years old.


      > Rose
      > Tom Smith <qim@...> wrote:
      > Due to the lull on this list I started checking out the
      > other autism
      > forums. This list was the first major list outside of the usenet list
      > "bit.listserv.autism" which then became the "St John's list". We were
      > the first to be formed as an alternative at yahoogroups, then
      > "eGroups". Many followed with niches in biomedical approaches, which
      > took off like a rocket natch, but this group was the only general
      > open
      > discussion and is still now except for the aspie groups.
      > Having worked in the field for 25 years before I hit the net I had a
      > general idea what was going on in the larger autism community and it
      > was verified when I arrived on the net. But there was a large group
      > of
      > new and very unhappy parents starting in about '94 or '95 on the net
      > who were tired of business as usual in the autism community and
      > targeted the Autism Society of America (ASA). They wanted government
      > help and didn't think ASA was doing enough to get it. Their best bet
      > at getting that help was by advocating early intervention using ABA
      > plus they absolutely hated the idea of Facilitated Communication (FC)
      > which was on the rise at the time by the traditional autism
      > advocates.
      > The behaviorists hated it too so they banded together with these
      > disaffected parents (Lenny Shaffer and FEAT) and in 10 short years
      > took
      > over the autism community lock, stock and barrel. Out with the old
      > and
      > in with the new.
      > There's more details in all this but I wanted to know if anyone had
      > anything to add or had a different perception of all this who
      > witnessed
      > it.
      > What's troubling about it is the tactics of these new parents. They
      > mean business and that alone has transformed the autism community.
      > Before it was rather casual and "humanistic", but overly politically
      > correct. These new parents are both politically correct and sort of
      > fascistic. They organize in a way to shut out anyone who doesn't
      > agree
      > with them. I noticed it at first when I went to a FEAT meeting back
      > in
      > '96. At first they allowed us professionals and others besides the
      > parents in but as soon as the pros and others started questioning
      > what
      > was going on, the science behind ABA etc., they shut everyone but the
      > parents out. In my recent internet travels I see they are now
      > organized by regions using internet forums and it's the ABA pros who
      > own and run the lists and they shut out the competition by saying
      > they
      > are only "parent groups".
      > As the society goes, so goes the autism community...
      > Tom
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