American U AXiD members disaffiliating

[navane]

Originally Posted by DGTess

I have a cousin who joined AXiD in part *because* of their affiliation with AS. Her sister is severely autistic.

Am I mistaken in the impression those opposing AS do so because it doesn't do enough for individuals? Instead focusing on research? Is that a bad thing? It may not be what some want, but I don't see it as a bad thing.

What am I missing?

A few posts above, SWTXBelle posted a link to a website which describes some of the issues people have with the organization.

[naraht]

Arguably, the *original* Autism Speaks founding setup by Bob and Susan Wright wasn't nearly as offensive.

However, the mergers with National Alliance for Autism Research and (even more so Cure Autism Now) have taken an organization that had a general concept of helping those with Autism to one devoted to finding a cure including a pre-natal test (allowing for selective abortions). The organization views Autism as only those with severe impact (such as those who are non-verbal, seizures etc.)), those whose additional care will in their advertising lead to such severe impact on the family that things like divorces will be caused.

https://en.wikipedia.org/wiki/Contro...cy_initiatives is a decent start on the difference between the Pathology paradigm and the Neurodiversity paradigm.

[DGTess]

Originally Posted by navane

A few posts above, SWTXBelle posted a link to a website which describes some of the issues people have with the organization.

Yeah, that's the post that caused my question. The first three points are simply "they don't do enough for individuals". The fourth is their marketing, which *in this woman's opinion* is disgusting. I've not seen it, and realize this is only one person.

No biggie; I was just curious. Just trying to understand.

[SWTXBelle]

Originally Posted by DGTess

Yeah, that's the post that caused my question. The first three points are simply "they don't do enough for individuals". The fourth is their marketing, which *in this woman's opinion* is disgusting. I've not seen it, and realize this is only one person.

No biggie; I was just curious. Just trying to understand.

I think you've missed some of her finer points. I'll try to help you understand.

- Spending 4% of the budget on family grants vs. 22% on fundraising - one metric to evaluate charities is the percentage spent on fundraising and administrative costs. It's why I don't give to the Red Cross and Good Will. YMMV, of course, but it's more than just "they don't do enough".

- One other big issue is more than not doing enough for individuals - it is the lack of those with autism in the organization. The irony behind the name "Autism Speaks" is that they haven't allowed the very people they are seeking to serve to speak. They did have someone, who quit the board, and she notes that they have finally added some people with autism, no doubt in direct response to the criticism, which I have been familiar with for a number of years.

- Did you watch the videos? As a person with autism, and the mother of a child with autism, her opinion carries more weight than Joe Blow off the street, at least to me. The examples she cites are certainly disgusting to me. Featuring a woman who wanted to kill herself and her child with autism, but doesn't because she has a neurotypical child? How is that advancing the needs of those with autism?

There are other charities whose focus is autism, and which I and many wish A Xi D would consider supporting. I like https://autisticadvocacy.org/

[ASTalumna06]

In addition to what SWTXBelle said above, Charity Navigator (charitynavigator.org) and GuideStar (guidestar.org) are two free resources for research into nonprofits, and the former provides an overall rating for each nonprofit based mainly on finances and accountability/transparency.

Historically, Autism Speaks certainly doesn't rank high when compared to other autism nonprofits. And the number of people they serve seems relatively low considering their revenue, name recognition, and advertised outreach. Also, it looks like the President is making more than $600,000/year.

I would like to point out, too, in regard to the fundraising and operational budgets of nonprofits: just like with for-profits, it's about balance. If a fundraising budget is higher, the expectation would be that funds raised and used for those in need are higher. A fundraising budget of 22% isn't necessarily too high and can be justified if enough money is being raised from those expenses and being used as advertised.

[navane]

Originally Posted by DGTess

Yeah, that's the post that caused my question. The first three points are simply "they don't do enough for individuals". The fourth is their marketing, which *in this woman's opinion* is disgusting. I've not seen it, and realize this is only one person.

No biggie; I was just curious. Just trying to understand.

Oh ok, since you didn't mention having questions about the content of the link, I thought you perhaps didn't see it.

My understanding of the controversy is simply this: autistic people vs. people with autism. Some people object to Autism Speaks for being an organization which seems to take the stance that autism is a disease which needs to be cured. As in, autistic people are seen as "defective" and a cure for these defects needs to be found. Instead, others prefer to take the approach of helping "people with autism". The distinction here is that people with autism are different, not defective, and deserve to have support just as they are.

I hope this helps.