Autism speaks - Mothering Forums

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#1 of 6 Old 10-19-2007, 04:00 PM - Thread Starter
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If memory serves there is a split in the community of parent with kids who are on spectrum or close to it about Autism Speaks.

The reason I am looking to refresh my memory is because it seems that someone from that group is coming to the local university to speak about "red flags" to look for in children. The information is getting passed around to all the parents lists.

I remember hearing some pretty negative things about this group. Am I recalling this correctly?
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#2 of 6 Old 10-19-2007, 04:23 PM
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Ooh - it's complicated. There are several issues - the biggest one being the incredibly downer video they released called Autism Every Day which has mothers discussing how horrible their lives are and at least one who has thought about killing their child.

Then there are issues w/ the founders of the group (grandparents of an ASD child) who are at odds with their daughter (the mother of the child) over environmental and biomedical issues.

So - I don't think they are inherently evil, but they are definitely not friends of the neurodiversity crowd OR the biomedical crowd - which is kinda funny since those 2 groups are often at odds as well :
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#3 of 6 Old 10-19-2007, 04:52 PM
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Autismspeaks/Cure Autism Now

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;
Autism is not a disease, autistics are not sick.

Since their stated reason for existing is offensive to me, there isn't much we can agree on.
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#4 of 6 Old 10-19-2007, 05:27 PM
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I think a lot of the problem stems from the fact that an organization called Autism Speaks has no actual autistic board members, though many have asked to be on their board.

Ah, here's some older threads on it.
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#5 of 6 Old 10-19-2007, 05:41 PM
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And their money goes to research almost solely dedicated to finding the origins of autism, as opposed to putting their money toward supporting autism as it is.
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#6 of 6 Old 10-19-2007, 05:48 PM
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Thank you for bringing this one up. I have wanted to say something about this here and make a post on it, but I am too shy to do that.

Here are my issues with autism speaks:

1.) Autism Everyday. Just look at the video and tell me you are not ill by watching it. There are reports that some parents of autistic children actually killed their children after watching this. One of these kids was Katie McCarron.

2.) They depict autistic characteristics as being things that are wrong with a child. They view people who are autistic as broken. They are not broken. There is nothing wrong with them. They just view the world differently than so called NT people. They still deserve all human rights and dignity.

3.) There are no autistic people on the board. Likely because they view autistics are sick people who are inferior and in need of a cure.

4.) They focus on scaring parents and the population into giving them money and so called "awareness". They use little kids who are on the spectrum as the cute "heartbreakingly young kiddos who are in need of help". A cute toddler gets more donations than a teenager or adult.

5.) Their money goes to researching why autism occurs instead of helping those with it or helping to fund schools and therapies.

6.) The founders cannot even agree on how to run their group. They actually hung their child out to dry in the media.

7.) They focus on curing autism instead of accepting autistic people for who they are and helping them cope and be productive and successful people.

8.) They fear monger and lobby. And each time one of them opens their mouth or goes on TV, many parents of autistic kids have to hear about the dribble they spew from every single well intentioned branch of their family tree.

I have a kid who has autistic tendencies but is not dx'ed as autistic. And even still, I hear all the "hey did you hear about Jenny McCarthy" or "did you hear about Autism speaks?" or "did you hear they cured this kid or did _______ therapy to help their kid" bullcrap.

It is time for Autism Speaks to shut up.

I love my children for who they are. I do not believe that their personalities or minds are diseased. I do not want them to be cured. I want them to be happy and successful and live up to their fullest potential. If it means a therapy, medication, surgery, diet, ect....I will do it. I will do all that I can to help them reach the goals they want in life. But I would NEVER call their minds or personalities diseased or broken. Anything we do is to help them cope and do well in life. Who they are as people does not need to be cured.
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