From the Newsletter
In 2005, after their grandson was diagnosed with autism, Bob Wright, the vice chairman of General Electric, and his wife, Suzanne Wright, founded Autism Speaks, the mega-charity for autism, aided by a $25 million donation from Bernie Marcus, the Home Depot founder. Suzanne, who died of pancreatic cancer in 2016, created the distinctive Autism Speaks logo – a blue puzzle piece.
Almost immediately, Autism Speaks courted controversy, even within the Wright family. Their daughter, Katie, was convinced that her son’s autism was caused by mercury in vaccines. In 2007, she appeared on the Oprah Winfrey Show (shame on Oprah!) to talk about this now-debunked theory. Anti-vaxxers amplified the fight on blogs and even attacked the New York Times for covering this issue. To its credit, Autism Speaks did not support their daughter’s anti-vax agenda. While they acknowledged that environmental issues may play a role in autism, most of their funding was devoted towards genetic research.
A couple of years later, they were under fire again. This time was for a video, “I am Autism.” Along a series of images of children with autism, a narrator in this video gleefully said, “I am Autism … I know where you live … I live there too … I work faster than pediatric AIDS, cancer and diabetes combined … And if you are happily married, I will make sure that your marriage fails.” Autism was Freddy Kruger who destroyed all its path. (Watch the video. It’s a jaw-dropper.)
Not surprisingly, autistic self-advocates were less than pleased about being described as devastating burdens on their families. They said that autistic people should not be stigmatized in order to raise money, and that resources from groups like Autistic Speaks should not be devoted to finding cures like genetic research, rather it should be spent on services and treatments that can benefit autistic people.
Then around 2010, the neurodiversity movement began to gather momentum. Neurodiversity advocates maintained that autism is not a disability, but a feature of normal human variation. With talents in many areas, autism often represents a neurological advantage, in fact. This message was clearly at odds with the older message about the autism curse, which was still embraced by Autism Speaks.
John Elder Robison, the author and autistic self-advocate, resigned from the board in 2013, because the group’s message that autism was a tragedy. Echoing this neurodiverse message, Robison wrote,
I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism – as a neurological difference – confers both gift and disability on everyone it touches. It’s the fire the moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way.
In 2016, Autism Speaks responded to this criticism. They included two individuals with autism on their board. They also changed the language of the mission statement, removing terms like “crisis” and “hardship.” They no longer said that they were looking for a “cure” to autism, but rather their goal was to raise awareness and support autism adults today. They recognized the diversity of individuals on the autistic spectrum, including those with unique gifts, while still stating that other folks on the spectrum have extreme needs. They now spend more on autism awareness than on scientific research on autism.
Anger at Autism Speaks remains. While some of the criticism may be justified, other statements are overblown and exaggerated through social media. For example, one opinion piece from Sara Luterman, a disability advocate, in 2020 required several edits and a lengthy correction notice from the editor.
In 2020, Autism Speaks is still going strong. They had $49 million in assets with most of their $95 million in revenue coming from their “Autism Walks” programs. Despite the pandemic, they increased their assets from the previous year. The lion share of their expenditures went towards building understanding and acceptance of autism. $35 million was spent on media and media services related to that goal, while only $5 million was spent on scientific research.
On Instagram and Facebook, Autism Speaks highlights various individuals with autism and their awesomeness for their 334,000 followers and 2 million followers, respectively. Gone is the message of doom. Now, it’s all “happy hands” and quirky sweetness. I’m a follower on both pages and regularly “like” posts.
I was an early devotee of neurodiversity. My son does have some rather unique gifts that are directly tied to his autism. As a former academic, I know very well that there are a whole lot of people teaching in the physics and computer science departments around the country who are on the autistic spectrum. I definitely don’t think that autism “stole” my child.
But maybe the pendulum has swung too far. Parents of children with extreme needs feel shamed about reaching out for help. On social media, they are quick to say how much they love their children, but they haven’t slept in days because their kids don’t sleep. Or they say that they are crying because they are cleaning poop off the walls again. They don’t feel like they have permission to vent, because it’s only “autism happy time” now.
Perhaps the neurodiversity movement has gone too far and is out-of-sync with reality. Currently, 80 percent of people with autism are unemployed, because autistic people have to blend in to get a job. Workers who need frequent “sensory breaks” are not hired. In schools, teachers do not appreciate autistic kids who have no filter and tell them that they are stupid. (Hello, Ian!) My filter-free son is about to enter an 18-21 program, because at the present moment he cannot blend in enough to take college classes or get a job.
Services at schools and in the community have not improved at all, since I first started on this journey 15 years ago. If anything, things are worse. This 18-21 program isn’t enough for Ian, so I’m trying to piece together other services that will support his autistic needs, foster his academic and career strengths, and create social opportunities for him. I spent five hours on all of that yesterday; I am not sure how much longer I can do this.
Despite these wild swings in message, the reality is that nothing has changed on the ground. Schools are the same. There are still few community services and governmental support for children with autism and their families. Employment and housing still remain elusive. At this moment, I do not care whether autism is disability or a neurological difference. I do not care who is advocating for him – an autistic person or able person. All I care about is results.
Related: What is Woke Autism? and On Autism Awareness Day, Let’s Actually Do Something John Elder Robison’s book, Look Me in the Eyes, is one of my favorites. For more on neurodiversity, check out NeuroTribes by Steve Silberman.
6 thoughts on “The Rocky History of Autism Speaks”
I do feel that the current ‘autism acceptance’ message – that it’s society that needs to change to accommodate autistic people – doesn’t do any favours for the families and autistic people who are struggling. After all, if it’s society (that nebulous concept) that needs to change, why should we funnel money/service to the autistic people – surely the golden world is just on the horizon [sarc]
Comparing this to the similar campaigns for the inclusion of people with a range of other disabilities into society (blind, physically handicapped, deaf, etc.) – you can see that being ‘other’ than mainstream has a whole host of societal problems attached. Yes, there are exceptional individuals who have succeeded within the mainstream (Temple Grandin; Stephen Hawking) – but that’s exactly what they are – ‘exceptional’.
There has been heaps of research shoing that being ‘different’ in any way is a barrier to employment (simply sending out an identical CV, with the name changed to a ‘white bread’ one shows that); and also in education – unconscious bias as well as conscious (parents giving their kids trashy names are doing them no favours – you may be an ‘individual’ but you’re also more likely to be a school drop-out and unemployed)
In a sense, people on the higher functioning end of the spectrum are ‘lucky’ – if they can learn to blend in, then their disability is invisible – and they won’t be immediately excluded (try even getting a job interview as a wheelchair user). Employers, by and large, simply don’t want to take avoidable risks – again there’s a lot of research showing that managers appoint people ‘like them’. Remember when a woman had to be at least twice as good as the competing men to get the promotion (and even then, often missed out).
The ‘woke’ campaigns claim that it’s society that needs to change – but that’s a generational shift (if it can be accomplished at all) – people with autism and their families need support *now*.
I know that the Blind Foundation in NZ is incredibly reluctant to lose any of the legislative protection that blind people have here (through accident of history) – despite the frequent assurances from the government that equivalent levels of support will be provided. They look at the provision for support for other people with disabilities, and go: “Yeah, Right” [That’s a nearly untranslatable NZ phrase – said in a highly dubious/sarcastic tone, meaning roughly: You have got to be kidding; No one would be dumb enough to believe what you just said] [NB: there’s an amazing sequence of Tui (NZ beer) billboards using this meme – if you want to check out NZ humour]
I don’t know that research into genetic causes of autism is likely to be of significant benefit – so I don’t have a particular beef with money moving away from this. I’m not seeing any significant research outcomes in any of the research into genetic diseases. But I’d like to see more funding going into support of people with autism and their families (pressure of government/state agencies, housing initiatives, etc), rather than ‘acceptance’ publicity…..
And if you are happily married, I will make sure that your marriage fails.
That makes it sound like autism cruises bars in a tight dress.
That ad was so tone deaf and clueless that it put the differences between Autism Speaks and other Autism communities into really sharp relief. I’m not in any community and find the ad repulsive. It talks about a person (the child with autism) as though they were inhabited by a a foreign creature, a changeling. It’s ugly..
I think the ad was rooted in parent/caregiver perception at a time when a sizeable group thought external insults were the cause of Autism (vaccines/mercury/environmental toxins, . . . ) and were seeking cures like hyperbaric chambers and chelation. If you think mercury has inhabited your child and it’s possible to kick it out, it’s easier to think of the child and autism as a duality.
That journey was never a part of this blog, but I know people who pursued them (both in real life and on the internet) some of whom are the strongest supporters of accommodation over normalization (not acceptance, really.) Many of the neurodiverse movement supporters want a lot of accommodation and services, including for those people with the highest support needs.
bj said, “I think the ad was rooted in parent/caregiver perception at a time when a sizeable group thought external insults were the cause of Autism (vaccines/mercury/environmental toxins, . . . ) and were seeking cures like hyperbaric chambers and chelation. If you think mercury has inhabited your child and it’s possible to kick it out, it’s easier to think of the child and autism as a duality.”
Yeah, the idea was often that you started with a normal kid but then something (vaccines?) happened and your perfect kid was wrecked.
Thanks for this. I’ve seen some of the controversy about Autism Speaks, but I have never had the time to do a deeper dive to figure out what’s going on. I have a cousin who is profoundly autistic – he doesn’t really speak and cannot function on his own – so I will admit to some skepticism to the message that what we need is acceptance. Acceptance will not help my cousin.
And I definitely agree that what we need are more services, but I am torn about the move away from funding for scientific research. I get that for some people with autism, we don’t need a cure or treatments, but for some, like my cousin, that would be so helpful.
… I work faster than pediatric AIDS, cancer and diabetes combined …
Does that make sense? Cancer isn’t particularly fast in most cases and diabetes is a chronic condition.
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