What is so bad about Autism Speaks nowadays?

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First off, let me preface this by saying that Autism Speaks was a terrible organisation 10, even 5 years ago. But all the objections against them seems to be based on what they have done instead of what they are doing now.

Objection 1: Perpetuating stigma against autistics

This was true in the past but a look at their youtube channel and website shows that they are all about neurodiversity and autism acceptance now.

Objection 2: They lobbied for ABA

In 2014, ABA was the only evidence-based therapy available, as defined by the NPDC.

However, their current website also has information about other therapies like Floortime even though it isn't an evidence-based practice yet.

And they are funding research into alternative treatments like minocycline and ketamine. To see what exactly they are funding go to https://science.grants.autismspeaks.org/search/. The minocycline study can be found by selecting the science radio button and selecting 2018 as the year. The ketamine study is being conducted by Cincinnati Children's Medical Centre, which is part of their Autism Treatment Network.

Objection 3: Low percentage of their funds goes to autistic people and families

For example:



But this is a gross misrepresentation of the facts.



That 4% is derived from only the grants section of their awareness, family services and advocacy program expenditure. The rest of the $23 million is lumped under "Awareness" & Lobbying.

Look at it this way:



Not counting the donated media which probably means donated airtime(?), a majority goes towards salaries. According to https://www.payscale.com/research/US/Employer=Autism_Speaks/Salary, the average salary at Autism Speaks is 81k a year.

The 10 million is used to pay the 120+(?) people who man their hotlines, set up their website, organise events, get more funding, work on inclusive hiring initiatives, help pass legislation, make sure autistic therapies are covered by insurance and do stuff like https://www.thespectrumcareers.com/.

To say that only 4% goes towards helping autistics and their families is misleading at best.

If I did the same thing to ASAN's form 990, then they only spent 5% on autistic people in 2016.

Objection 4: CEO pocketing the money

Autism Speak's form 990 states that their president was paid $514k in 2017.

This might look like a lot but according to Charity Navigator 2016 CEO Compensation Study, this is higher than normal but not the highest. With total expense of $42,861,302 in 2017, this means that they paid their president 1.2% of their total expenses. In comparison, other charities with similar expenditure paid their CEOs anywhere between 0.7% - 2% of their total expenses (as best as I could see from their scatter graph).

Objection 5: Researching causes and interventions = eugenics

This might have made sense when Autism Speaks was still searching for a cure but they have since stated themselves that a cure is scientifically impossible.

This objection doesn't make sense now.

Researching causes and interventions looks something like this article.

Summary: Researchers found that offspring of mice fed high-fat diets had social deficits and a reduction of a certain bacteria in the gut. Restoring that bacteria reversed their social deficits.

The next step would probably be to see if it's the same for some autistics.

Another article.

Summary: People with Timothy syndrome have defective calcium channels which causes too much dopamine and norepinephrine which are important for sensory processing and social behaviour. Now that they know the cause, they can develop and test treatments that target the defective calcium channel.

And of course, the defective calcium channel might not be limited to autistics with Timothy syndrome. It is possible that other autistics might also have the same defect and could benefit from the same treatment.

Is it possible that a prenatal test for Timothy syndrome be developed? Yes. Is it possible that mothers would abort babies with Timothy syndrome? Yes.

But as far as I know, there is no country in the world with mandatory tests and mandatory abortions if the tests are positive for some disability or other. The decision is to abort or not is also left to the mother or the parents of the baby as far as I know.

Autism Speaks is not responsible for the personal decisions of mothers and/or parents. They also seem to be doing the opposite of eugenics nowadays with their neurodiversity message.

TLDR
Autism speaks used to be bad but now seem to be better. Or am I missing something?

Autism Speaks has been unknown to me most of my life, and I only found out about their actions a few years ago. I am not certain about the current actions of AS at this very moment as I have been avoiding it for a few years now.

Just because they recommend other therapies does not mean their support for ABA has lessoned.

They partner with Google on the #MSSNG massive genetic database project. I find that name along with the puzzle piece offensive. I am not missing nor a puzzle but part of the human race(which is why I find the name of this website problematic).

This is not my opinion but many people believe the change in mission statement, the resignation of Bob Wright as CEO, the appointment of 3 autistic board members is a smokescreen to cover up that they have not changed at all. In thier view the #MSSNG project is still proof they are going for eugenic elimination. The word “solution” in the mission statemet is a code word for the true goal of “final solution”.

My opinion is similar to yours is that this is not the same organization that put out fundraising videos 10 years ago equating autistics to satanic doppelgängers. Based on their history and the fact that there has not been a true investigation as to where the money is really going I agree that there are still legitimate reasons to be suspicious. But I think the sheer significance and number of changes mean that these changes are a lot more than cosmetic. While the there has been change at the top I am sure there are people within the organization looking for an opportunity to go back to the full on fear and hate of autism days. I am a supporter of the Neurodiversity movement but the continuing near universal sentiment by its supporters that these changes are all a smokescreen and the near daily statements by people saying they want to eliminate us and the false statements that they have no autistic people working for them undermines those within the organization seeking to hold onto and continue the progress made. If I was a member of Autism Speaks pining to go back to the way it was all I need to say “Why should we be pandering to these ungrateful bastards?” I would argue their continuing irrational behaviors is proof of what we have have been saying all along Autism is a horrible defect.

Right now their list of therapies is sorted alphabetically so it is just coincidence that ABA is first on that list.

If you meant that they should not mention ABA at all, what other options are there? The Early Denver Start Model and Pivotal Response Treatment are based on ABA. Floortime has only 2 studies showing it's efficacy. RDI has 0. Occupational Therapy, Speech Therapy and TEACCH all don't have the "What is the evidence that it is effective?" section. Verbal Speech Therapy is only effective at helping autistic children develop spoken language.

Maybe they should fund more Floortime and RDI studies but I would rather they fund studies for pharmacological treatment options first since those can work for both children and adults and will be cheaper than therapy.

Your objection to MSSNG and the puzzle logo is another common objection.

However, the missing vowels in MSSNG is supposed to represent missing information, not that autistics are missing something. But since they didn't go out of their way to explain that (I couldn't find that article on google but it is the fourth result in duckduckgo when searching for MSSNG), I can understand how you came to your interpretation as well.

As for the puzzle piece, one interpretation is that autistics are puzzles to be solved. It's a valid interpretation but another equally valid interpretation is that autistics are part of a bigger human jigsaw. For more interpretations, read https://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/.

I'm glad we share similar opinions. Based on Twitter, I thought I was the only one.

ABA is considered the “gold standard” treatment. That is the reason that there are so many more scientific papers saying ABA is “effective” compared with other treatments. ABA is a monopoly. If you are a researcher you want prestige and need money and there is little of both chasing “alternative” treatments. Autism Speaks as the go to organization for the media and government wanting information about Autism has been an important factor in ABA both becoming a monopoly and continuing to be one.

Autistic people have had extremely limited role in defining what is an “effective” treatment is.

If you are a parent of an autistic child and do not want ABA it might mean uprooting family to find the “alternative” therapy you want and paying for it out of pocket. This is not a good thing for a change averse autistic child. To do this is beyound the means of many families leaving the only option ABA or trying to do it yourself which is beyond the capabilities of most parents. Even if the family can afford going for an unvetted treatment poses considerable risk. If you conform and stick with ABA most areas have it and insurence companies in most states thanks to Autism Speaks lobbying are mandated to cover it.

One should treat any posting by Autism Speaks or any company with suspicion. These postings are designed to make the company look as good as possible.

I think the main gripe with them is AS doesn't seem to do much of anything on a practical level. It's all walks to raise money, celebrities to raise money, but what does the charity actually DO? For example American Cancer Society can help arrange housing and transportation for cancer patients but when was the last time AS did even that?

@ASPartOfMe

I'm going to have to disagree with the part about Autism Speaks being an important factor for ABA becoming a monopoly. It's just a simple case of ABA being around since the 1960s and so it had more time for more studies to say it is effective.

As for them lobbying for ABA, it was probably the safer option, politically speaking. If they had lobbied for some unproven option, the bill might not have passed because insurance companies would have lobbied against it with a great case of "Why should we provide coverage for an expensive and unproven treatment?"

@BobinPgh

You can see exactly where their grant money is going by going to https://science.grants.autismspeaks.org/search/.

Their form 990 also has a section that lists out major accomplishments. For example one of their accomplishments they listed in their 2017 990 form was:

With Insurance Change, Access To ABA Therapy Expected To Grow

You forgot the 6th objection that they used to dabble in anti-vaccine quackery even after most researchers believed that Andrew Wakefield's paper was wrong. Though that's no longer the case either.

Thanks for a very thoughtful analysis, Dvdz.

It's my belief -- based on what I've seen locally from Autism Speaks members and from talking to the Autism Speaks leadership -- that they have moved on from the well-documented and highly objectionable practices of the former leadership team. I'm on the ASAN side of the autism-advocacy spectrum, but I hope that we have the opportunity to collaborate with Autism Speaks on the issues where we have common ground.

Dvds:

Your post looks like a PR campaign for Autism Speaks (AS). Are you affiliated with them in any way? What is AS to you?

I'm not affiliated with AS in any way.

What is AS to me? Well, how to answer that question....

I have heard of AS before, back when they released that "I Am Autism" video and I thought: "What a horrible organisation."

Last April, during the LightItBlue campaign, someone posted that %4 infographic on Twitter. (https://twitter.com/RyanHendry94/status/980460994576175104)



Was it really true? I looked at the source of that infographic myself and found that it was false. Not only had they ignored a significant amount of work by a lot of people in Autism Speaks, they had also used the previous year's expense instead of the current year's expense to make the figure look smaller. The level of data manipulation is insane...

From AS 2016 form 990 (https://www.autismspeaks.org/sites/default/files/2018-08/2016-form-990.pdf):

Previous year's expenses = 60,617,406
Current year's expenses = 46,739,673

Science = 11,729,054 = 25.09% of current year's expenses
Fundraising = 9,981,115 = 21.35% of current year's expenses
Family Grant = 2,497,935 = 4.12% of PREVIOUS year's expenses. Correct % based on current year is 5.34%
Awareness & Lobbying = 23,188,019 - 2,497,935 = 20,690,084 = 44.27% of current year's expenses. But since they removed 1.22% from the Family Grant, they added it back here which made this 45.49% which they rounded up to 46%.
Misc is just the remainder, which you can get by 100% - 25% - 21% - 4% - 46% = 4%

So they got the Science and Fundraising % correct then decided to use the wrong figure for the Family Services to make it look smaller and then fudge the rest of it.

I don't know who was behind this infographic but it was clear to me then that it wasn't based on fact and that there was an agenda behind it.

Just a few days ago, someone announced on Twitter (https://twitter.com/CWA/status/1079448314591014918) that they were going to be an ambassador for AS. Sure enough, in the replies were the Twitter #actuallyautistic community bashing that person for associating with AS. Someone was spouting that 4% figure again and I replied trying to correct that and some replied to me and I began to look into the other criticisms of AS seriously.

Maybe it's that famous autistic sense of justice but this #actuallyautistic community was starting to piss me off. If they wanted to criticise AS, at least have updated criticisms. And I seemed to be the only one who was trying to fight the misinformation on Twitter.

Which led to this post.

Ok, so I did a google Image search and found that ASAN is the one responsible for the infographics

https://autisticadvocacy.org/tag/autism-speaks/
https://autisticadvocacy.org/wp-content/uploads/2018/03/AutismSpeaksFlyer_color_2018.pdf
https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer_color_2017.pdf

And the data manipulation goes back to even their 2017 flyer as well.

Their 2017 flyer states:
32% Research
24% Fundraising
3% Family Services
2% Misc
39% "Awareness" & Lobbying

https://www.autismspeaks.org/sites/default/files/2018-09/2015-form-990_2.pdf

Previous year's expenses = 58,589,552
Current year's expenses = 60,617,406

Science = 19,564,193 = 32.27% of current year's expenses
Fundraising = 12,806,970 = 21.13% of current year's expenses or 21.86% of previous year's expenses. Don't know how they got 24%...
Family Grant = 2,524,195 = 4.16% of current year's expenses or 4.31% of previous year's expenses. Notice that this is not 3% as stated in the ASAN flyer.
"Awareness" & Lobbying = 25,621,093 - 2,524,195 = 23,096,898 = 39.42% of PREVIOUS year's expenses. Current year's expenses is 38.10%. But since they added 1% here, they deducted %1 from the family grant section.
Misc is just the remainder.

Did they do all this just so that they could say "Less than 4% of Autism Speaks’ budget" on the 2017 flyer and "spends more than 5x as much—21%—on fundraising" on the 2018 flyer instead of "4% of Autism Speaks’ budget" and "spends more than 4x as much—21%—on fundraising"?

WTF is going on here?

Um I kinda got lost in the amount of words in that post sorry.

Can someone tell me what Autism Speaks is? I've never heard of it.