Autism Speaks, despite its prominence as a major autism advocacy and research organisation, has faced significant criticism from autistic self-advocates. Let’s delve into the objections raised by the autistic community:
- Viewing Autism as a Disease:
- Autism Speaks was founded on the premise that autism is a disease that needs to be cured. Their original mission statement reflected this perspective.
- Most autistic self-advocates emphasise that autism is not a disease but rather a natural variation in neurotype. We advocate for acceptance rather than seeking a cure.
- Stigmatization and Discrimination:
- By framing autism as a problem to be fixed, Autism Speaks inadvertently contributes to stigma and discrimination against autistic individuals.
- This portrayal reinforces the idea that there is something inherently wrong with autistic people, perpetuating harmful stereotypes.
- Lack of Autistic Representation:
- Autism Speaks is primarily led by non-autistic parents of autistic children. This lack of authentic representation is a major concern.
- Autistic self-advocates argue that an advocacy organisation without autistic voices is akin to a whites-only group addressing racism or a men-only panel discussing sexism.
- “I Am Autism” Video:
- One of the most criticised aspects is Autism Speaks’ “I Am Autism” promotional video.
- In this video, autism is portrayed as an enemy, causing fear and perpetuating negative stereotypes. Many found it deeply offensive and dehumanizing.
- Focus on Difficulties Over Possibilities:
- Autism Speaks tends to emphasise the deficits and challenges associated with autism rather than celebrating the unique strengths and possibilities of autistic lives3.
- Financial Allocation:
- Critics point out that only a small fraction of Autism Speaks’ budget goes toward direct services for autistic individuals and families.
- Less than 1/3 of 1% of their budget is allocated to the “Family Service” grants that fund services.
- Autism Acceptance vs. Awareness:
- Autistic self-advocates prefer a shift from mere awareness to autism acceptance. We advocate for understanding, inclusion, and celebrating autistic achievements.
In summary, while Autism Speaks aims to raise awareness and provide support, its approach has sparked controversy due to its framing of autism, lack of authentic representation, and focus on difficulties rather than possibilities.
Sources used in preparing this post:
- The Mary Sue: The Autism Speaks Controversy, Explained
- Psychology Today: A Reporter’s Guide to the Autism Speaks Debacle
- The Conversation: Autism advocacy and research misses the mark if autistic people are left out
- Autistic Self Advocacy Network: Before you donate to Autism Speaks, consider the facts
- Autistic Mama: 4 Simple Reasons I Don’t Support Autism Speaks
- Reporter Magazine, RIT: The Autism Speaks Controversy
Another Spectrum 
6 Apr, 2024 at 1:53 am
Hi Barry. Is there any other group or person who can start another group more accurately reflecting the current view that autism is not a disease but just how some people are. A group that can focus on the ways society can improve their awareness and acceptance of autistic people? Best Wishes. Scottie
6 Apr, 2024 at 4:09 pm
Hi Scottie, yes there are a few groups that are of autistics, by autistics for autistics, but they lack big donors and don’t have the marketing clout that Autism Speaks has. More publicity can be gained when autism is treated as something to be afraid of, that it robs families of their children, that it has become an epidemic, and so on. People who are autistic are demonised in much the same way as trans and gender diverse folk are.
In the US, a few autism self advocacy groups are slowly being recognised, but it’s still Autism $peaks that most non-autistics turn to when they want to “do something about autism”.
An important self advocacy organisation in America is the Autistic Self Advocacy Network (ASAN): https://autisticadvocacy.org. In this corner of the world there is The Autistic Self Advocacy Network of Australia and New Zealand (ASAN AUNZ),run by Australian and New Zealander Autistic people, for Autistic people – https://asan-aunz.org. There are similar self advocacy groups in other parts of the world.
Unfortunately there is still a widely held belief by the general public and much of the medical profession that we are incapable of self advocacy so it’s still an uphill battle. Perhaps where autistic people are today is where gays were in the 1960s.
7 Apr, 2024 at 9:16 am
Hello Barry. I emphasized with all you wrote. I found such familiarity to all you wrote. I wanted to make the comparison you did in your last sentence. But until I read that sentence I told my self not to steal his thunder, his real outrage about what is happening to his people by comparing it to your community. I feel everyone deserves to express what is happening to them without having others latch on to it. But I do understand. Really
Perhaps where autistic people are today is where gays were in the 1960s. wow so true.
What helped people / kids like me to move to acceptance was the help of others pushing our humanity.
So what I ask you, how can I return that favor? How can I help autistic people in any way. I have said before you opened my eyes to the entire misrepresentation and I have constantly directed people to your blog that may have questions.
Autism is not a disease, it is not something that needs to be cured! It is the way some people are born. Society needs to adjust themselves to recognize people who are different just as they have had to do to married gay people (I still get people who when I mention my spouse make a comment out her, not even considering my spouse is male even after all these years of it being legal.)
Barry I will be a supporter in every way I can. Just let me know. I admit as I said before this is all new to me. I may have in the past been as unintentionally as bigoted or stupid because I simply did not understand. I would hope my nature to be understanding and forgiving of others may have made me not notice a person’s autism. I simply deal with people where they are where ever that may be.
Best wishes. Scottie
7 Apr, 2024 at 1:57 pm
Although my blog is called Another Spectrum, I made a deliberate decision early on not to blog exclusively about autism. The reason being that such a blog would be unlikely to attract readers who know little or nothing about autism and neurodiversity. Effectively it would be like preaching to the converted. I felt it important to gain a readership that would come to realise that an autistic person is more than their autism and is just as human as anyone else.
I also realised that it’s very difficult to empathise with autistic experience unless I can make what I say relatable to the experiences of other minorities. Firstly, in the eyes of other disadvantaged/oppressed groups, the autistic experience can be seen as a struggle similar to their own, and secondly within the liberal elements of the wider Western culture they will see a commonality of our struggle with those of other disadvantaged/oppressed groups.
And of course the opposite has also happened. One discovery I have made is that Western culture is less tolerant of diversity than many other cultures, and I have my familial relationship to Japanese and Māori cultures to be thankful to. I have become more aware and empathetic to the struggles of other groups, and if all I can do is offer moral support, it still helps others who struggle with acceptance/recognition.
I seldom re-blog as I want Another Spectrum to reflect my distinctive voice, but I also realise there are many voices worthy of being heard and I should help in that. I’m not sure how I should do that, but I’m thinking one way might be to do a weekly (or semi weekly) post with summaries and links to other blog articles that I feel should be viewed more widely.
Scottie, simply allowing me to comment on your blog and relating autistic experience to the struggles of the LGBTGIA+ communities is very generous. Some other blogs shut down such comparisons as being off topic. I can’t ask for anything more. But if you find that any of my blog posts or comments cause a “light-bulb” moment, you are more than welcome to share it with your readers.
🙇 🙏