When I was new to autism, I got involved with several autism support groups. The first, probably not surprisingly, was the local chapter of the Autism Society of America. Across the board, ASA chapters tend to be solid and helpful - and since ASA has no particular therapeutic agenda, a broad range of parents attend. Even better, there are ASA chapters in many communities. Typically, members of your local ASA Chapter are good folks to approach for information about local doctors, therapists, schools and more.
Later, I joined our local school's special needs parenting group. Even later, I found a support organization in the area dedicated to the needs of families whose children are "higher functioning" - and while my son didn't quite fit in, I found the meetings and parents to be helpful.
Are you a part of an autism support organization? What do you like/dislike? Which organizations would you include in a top ten autism support organizations list? (Qualifications: the organization must be national/international, must offer actual support meetings, and must offer information about local resources, options, etc.).
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The Autism Science Foundation is one of the few groups I know of that haven’t been co-opted or influenced by the bio-med movement. I’m guessing that’s what you mean by “a therapeutic agenda”. ASA is better than most, but its website still pushes the autism epidemic angle, and its annual conference attracts the usual bio-med vendors.
Most autism organizations are loathe to take a principled stand against bio-med quackery for fear of alienating their rank and file members – the parents who organize and support the autism walks and bake sales that bring in the donations. The Autism Society of Wisconsin kicked a member off its board a few years back for objecting to ASW list serve members who were openly discussing ways to commit insurance fraud, so chelation would be covered.
No, ANB, that is NOT what I mean by a “therapeutic agenda.” ASF does not provide parent support groups.
What I MEANT was that some support organizations are organized, for example, around ABA, biomedical treatments, floortime, etc. As a result, the parents who come to those meetings are only parents dedicated to those treatment modalities.
PLEASE don’t put words (or agendas) into my mouth.
Lisa
Then please be less obtuse in your posts. Your definition of “therapeutic agenda” is what I had in mind. You’re just arguing matter of degree.
As far as I can tell, your agenda is the same as the autism advocacy orgs. You know what’s right, but can’t say because it might make you less popular with the wrong people.
ANB, I’m actually not arguing at all. I’m asking readers to offer information about support groups they like. For example, I really like a group called ASCENDgroup.org, which provides get togethers, conferences, a website, buddy groups and more to families of children with aspergers and HFA in the greater Philadelphia area. That group, however, isn’t national/internation, so it’s not really helpful to anyone outside of greater Philadelphia.
But I must say that I’m impressed that you can turn a request like this one into a full-fledged fight! Congratulations!
Lisa
And by the way, when it comes to “what is right,” what I do know is that it is a helpful thing to have a group of autism parents to turn to for local help, information and resources. How you can possibly suggest that’s controversial I have no idea.
You have no idea. Amen to that. ; -)
ANB, every day in every way you remind me more and more of my brother.
why in the world are you arguing with me about support groups? are you just trying to make me nuts, or do you have an actual point to make? if your point is “Alison Singer’s research organization does good work,” that’s a fine point of view, but has nothing to do with the topic at hand.
which is – support groups.
Hi Lisa, ANB, don’t have a support group to recommend, but I do enjoy reading/communicating on this site a lot.:)
A bit off topic, but I did not know where to post it; it seems some spam has gotten in on the thread about therapy hours;starting at post 4 with a very offensive sexual comment. Figured I would let you know so you could delete it.
thanks, Hera!
Just to clarify, ANB, when Lisa said, “since ASA has no particular therapeutic agenda, a broad range of parents attend” that was just her comment on something she likes about ASA, at least that’s how I took it — not knocking any particular form of therapy, just appreciating the diversity of members and interests in the group she visited.
I love TACA. They offer support in so many forms — especially meetings, seminars, and on the internet — on a variety of aspects of autism — from education, therapies, biomedical, family issues, science and more. They have gone national and are still growing.
The Canadian National Autism Foundation was formed in June 2000, by parents of children with autism.The CNAF is a foundation that was formed in June 2000 by parents and caregivers of children with autism.
The CNAF is dedicated to promoting autism awareness, assisting families with information they require and raising funds to support Canadian based autism research.
The foundation is completely operated by volunteers that are dedicated to helping and raising awareness
Easter Seals across the country have resources, networks and services for families living with autism. We also partner closely with ASA both nationally and locally.
ANB gets wound up about this? … Wait til September…. My vote is for TACA Generation Rescue. I have actually had some frustrating experiences with ASA. TannersDad Tim Alison Singer’s Group does nothing to support parents.
Tim – am afraid to ask… but… what happens in September??
My top votes are for the National Autism Association, TACA, Generation Rescue, and the Autism Research Institute.
In September the world changes. Two Gentlemen Dan Olmsted & Mark Blaxill go back in time & trace our interaction with Mercury over the years. They look at the original 11 cases that brought about the word Autism. The path is made clear. We did this to ourselves. The Book: The Age of Autism Mercury, Medicine and A Mandmade Epidemic … My review is here…. http://bit.ly/cZLvmd
No therapeutic agenda there, either.