Autism

7 Reasons Why I Support Autism Speaks as an autistic adult

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I’m autistic and I work for Autism Speaks as their Senior Social Media Manager. I work there because I support them, and have for a few years now. The opinions I’m sharing here are solely my own, as one autistic person. I don’t speak for Autism Speaks or the autism community. No one alone speaks for the autism community. 

Anyone who has read my book knows that until a few years ago I was neutral about Autism Speaks. Why? Because I didn’t have enough information. I had incorrect information, too. I’m not the type of person who reads an opinion online and takes it at face value. I formed my opinion based on my own research and what I discovered to be facts. 

Now that I’ve worked for Autism Speaks for a while, I can confidently say that what I discovered was correct, and I do support Autism Speaks and its mission.

Is Autism Speaks a hate group?

Every single time I mention Autism Speaks in one of my posts, someone comments that I need to do my research because Autism Speaks is a hate group. 

It’s people’s right to not support Autism Speaks, of course. If that’s the case with you, say “I do not support Autism Speaks,” not “Autism Speaks is a hate group.” I encourage you to do research to challenge your belief. See what you find. Spreading misinformation about an organization you don’t support has real-life effects.

7 Reasons Why I Support Autism Speaks

1. They listen to autistic people

Not only do they want people on the autism spectrum to reach their full potential as individuals, but they listen and give a voice to autistic people.

In the past, they’ve listened to feedback from the autism community and made positive changes. 

One of the things that keeps being said about Autism Speaks is that they don’t hire autistic people and don’t have autistic people on their board. Both accusations are false. How do I know? I’m autistic and I work at Autism Speaks and I’m far from their only autistic employee. People aren’t obligated to disclose their diagnosis and honestly, I don’t blame those who don’t, when I see the bullying of anyone who supports Autism Speaks. 

On their board, there’s Dr. Stephen Shore, who is openly autistic. For those who don’t know, he’s the guy who originally said, “if you know one autistic person, then you know one autistic person.”

Autism Speaks also has a podcast called Adulting On The Spectrum, produced and hosted by two autistic adults, me and Andrew Komarow. We have only autistic adults as guests — even those who don’t support Autism Speaks.

2. They don’t support eugenics 

No idea where the rumor that Autism Speaks supports eugenics came from, but it’s completely false. “Autism Speaks does not support eugenics. Our research in the genomics field (via AGRE, MSSNG, and PATH) exists to help advance the field so that ultimately autistic people have access to personalized, precision care that will empower them to lead their best lives.”

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3. They use the puzzle piece symbol

Just like many autistic adults, and loved ones of people with autism, I like the puzzle piece symbol. Contrary to what’s said on social media, Autism Speaks doesn’t use the puzzle piece symbol because they want to represent that people with autism are missing a piece. They use it because they believe that their updated, more colorful puzzle piece, represents inclusivity and optimism as they look toward a future of progress for those on the autism spectrum. It has never been about autistic people “missing a piece”. Let’s stop that rumor, okay?

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4. They’re not looking for a cure

“Cure” was removed from its mission statement in 2016. The thing is, even if they were looking for a cure, it still wouldn’t be a reason to call them a hate group. Many autistic people are in favor of research into a cure. Many are offended by the idea. We don’t even know what a “cure” would look like. What if we could target a specific struggle that affects many autistic people, while keeping the more personal or preferred traits? 

Some of us struggle more than others and don’t see our autism as just a personality difference. It should be a personal choice. Back to the point though, Autism Speaks is NOT trying to cure autism.

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5. They do a lot for the autism community

Recently, they helped get Medicaid to cover autism for children in all 50 states, Texas being the last. They also helped develop the WHO Caregiver Skills Training Program. Here are some other goals they have: 

  • Increasing early childhood screening and timely intervention with our bilingual public service campaigns aims to lower the age of diagnosis to help children with autism reach their fullest potential and offer resources to help caregivers better support their children with autism. I personally was able to get an early diagnosis for Charlie (22 months old), thanks to the M-Chat, the results of the test are what got the ball rolling. He scored so high that doctors took us seriously right away.
  • Improving the transition to adulthood for the 70,000+ autistic Americans who age out of school-based support each year by offering free online resources for transition, employment, education, housing, and community living. We also launched our new inclusive employment initiative (WIN) to build and support inclusive workplaces through a comprehensive suite of resources. 
  • Ensuring access to reliable information and services throughout the life span by continuing to expand our Autism Response Team’s reach, technical skills, and knowledge to provide more people– particularly in underserved areas and communities – access to resources, information, and support from time of diagnosis through adult life.
  • Their autism hotline is amazing

Their hotline is The Autism Response Team. For everyone looking for help, The Autism Response Team (ART) is an information line for the autism community.  Autism Speaks Team members are specially trained to provide personalized information and resources to people with autism and their families. 

You’ll get personalized advice based on what your situation and needs are. It’s free, of course.

Get in touch with their Autism Response Team here.

6. Their website is a mine of autism resources

It’s not the easiest website to navigate but when you know where to look, you’ll be amazed at the resources available for free.

I often get asked about how to teach children AAC. That’s a complicated question and task but their guide is a great starting point:

  • If you suspect your child has autism, take the M-CHAT here.
  • Haircuts? Autism Swim lessons? Autism evaluations. You’ll find your answers here.

7. They include everyone on the spectrum

Everyone on the spectrum is included at Autism Speaks, people with low support needs, people with higher support needs, and everyone in between. They also provide support to caregivers of autistic people. As someone with level 1 autism, raising a child with level 3 autism, I find this representation very important. Just take a look at the diversity of profiles and stories shared on the Autism Speaks Instagram page. No one is left out and that’s amazing!

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The Autism Speaks controversy

So where does the controversy come from? Some of it comes from mistakes made a decade ago that have since been fixed and some of it comes from the constant propaganda being spread on social media.

The main mistake was the “I am Autism” video, which depicted autism in a rather uncomfortable way with some questionable wording. Not only is that video TWELVE years old, but Autism Speaks has also apologized for it and it was taken down from their website within a few days of being posted. This video does not represent Autism Speaks. Here’s their statement about it:

“I Am Autism” was a mistake and the video was removed from our channels shortly after it was posted, in 2009. We apologize for the video and the harm it may have caused. Since 2009 we have not shared or distributed the video. We are aware that the video is still being posted and shared today by others as an example of our current campaigns and messaging – which it is not.

We are focused on supporting autistic people of all levels of need so that ultimately, they can lead their most meaningful lives – of their choosing. Our public service campaigns and marketing efforts reflect this focus on personal growth and inclusivity.”

I’d like to add that non-profit organizations are required to report their expenses publicly so if you see that fake pie chart being circulated, again don’t take it as face value. I implore you to go Autism Speaks website to look at public numbers and facts.

Give organizations the chance to evolve

Bottom line. Companies evolve. I think it’s amazing that Autism Speaks listened to the autistic community, took the feedback, and made meaningful changes. We can’t expect perfection but we can request to be listened to, and on that front Autism Speaks delivered.

I’m autistic and I support Autism Speaks, and I hope you give them a chance.

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12 Comments

  • Reply
    LorrieAnne
    2022-06-14 at 4:27 AM

    My life has been hell. I just learned that I am autistic in 2020 at the age of 57. Now my life is more hell!!!!

    • Reply
      Helen
      2022-08-05 at 10:05 PM

      Why is it more hell after learning you’re autistic?

  • Reply
    mars
    2022-07-18 at 1:05 AM

    wow this is like bad like real bad did you get paid to write this by autism speaks bad still only 1 autistic person of 28 individuals on its Board of Directors from what i know and they are still funding cures do better.

  • Reply
    Helen
    2022-08-05 at 10:11 PM

    I don’t understand why people are offended over talk of a cure?
    The high functioning autistics are rejected by society and the low functioning autistics need daily support.
    I am undiagnosed but I can say with certainty that I’m on the spectrum. I’m considering socialization training for myself and possibly for my daughter. It gets tiring living on the fringe of society.

    • Reply
      Noah
      2022-09-26 at 5:42 PM

      You shouldn’t be living on the fringes of society, though. Therein lies the problem. What the good autism advocacy groups are doing, are fighting FOR autism’s acceptance in society, not AGAINST it like Autism Speaks is. Socialization training is good, and it worked for me, but I was taught to embrace my autism instead of suppressing it.
      If you have autism, you shouldn’t be living with the thought that there’s something wrong with you. Like you need to be “fixed.” It is the public view of autism that needs fixing.

  • Reply
    amgil
    2022-08-13 at 3:45 AM

    as an autist, fuck off. whos paying you?

    • Reply
      Fuck You... That's Why!!!
      2022-10-04 at 6:50 PM

      Was going to ask the same thing. I don’t for a minute believe this person is autistic and if they are they are being paid by Autism $peaks so autism speaks as someone who they can point to and say “look this autistic person supports what we’re doing”..

      The idea that something that isn’t a disease and is completely genetic needs to be “cured “is fucking offensive and is a covert way of advocating for eugenics.

      When it comes down to it autistic folks just want the same thing as everyone else we want to be accepted for who we are and we don’t want people to pretend something that is part of our lives/personalities is some sort of disease that needs to be “cured” when many of us are extremely proud to be autistic and we wouldn’t want to be neurotypical if we had the choice.

      Not to mention autism speak pretty much only exists to let crappy parents feel like they’re in the right for wanting to abuse their autistic children because with the way Autism $peaks talks they genuinely make it sound like having a kid with autism is more devastating than losing your kid to cancer.

      This whole piece reeks of “look at all the money Autism $peaks gave me to dunk on my own people”

      And then you see the idiotic neurotypicals claiming that they don’t understand why suggesting something that isn’t a disease needing a curious offensive because they don’t realize that if it’s not a disease it doesn’t need to be cured and there’s nothing wrong with us it’s honestly fucking disgusting if you ask me.

      • Reply
        Jae
        2022-10-23 at 6:53 AM

        I’m in my late 20s. I was diagnosed with Aspergers as a child and have been living with it, ADHD, and a learning disability my whole life. There are positives and there are negatives, but if I could choose not to be on the spectrum, I think I would. It is exhausting and overwhelming. Every day. It is possible to say this without devolving into stinking self-hatred and self-pity, as hard as that may be to believe. Do I think people could do more to just take me as I am and accept me, and help accommodate me in some ways? Yes of course, and hell, I’m in school to be a nurse right now and I get extended testing time on all my exams, among other things, but that doesn’t mean I’m not gonna do work on my end to improve my social skills and figure out ways to accommodate for my sensory processing issues.

        And in regards to your comment that trying to find a cure is “eugenics”, people decide to get abortions or not have children all the time for any number of reasons related to their genetics (as is their choice), and there is no way I would sit and listen to some hysterical screed like what you’ve written trying to tell me and mine that choosing not to have a child or to abort, when there’s a very high chance our child could have autism or down syndrome or some other developmental disability, is eugenics and that it’s “wrong”. I know very little about Autism Speaks, I really just found this blog or whatever because I googled “are there any autistic people who support Autism Speaks” out of curiosity after watching that stupid “I Am Autism” video, but never forget that Autism is a diagnosis, not an identity, or at least it’s PART of an identity; not all of us who have it think the same and not all of us are obnoxious and cultlike about it (like you appear to be from your comment).

        One more thing, the fact that you say “idiotic neurotypicals” and “dunk on my own people” tells me something too, I think you treat having autism as some kind of badge, as an identity, as something that makes you feel a part of some chosen few, almost like a race or an ethnic group. We’re not special. I know the world is hard to navigate for us, I know it often feels unconcerned and arbitrary, and I know people could often stand to have more patience with us, but truly, the pigheadedness and sectarian attitude that you put on display here is not going to do shit for anyone. Bye-bye for now xoxoxo.

  • Reply
    KG
    2022-08-16 at 4:23 AM

    Thank you for writing this blog post! As an autistic person who personally knows former employees of AS, I know that the controversy around the org is not as black and white as the Internet likes to make it out to be.

    Most of the people who vehemently hate on Autism Speaks haven’t actually done their research on the history of the charity. I kept on seeing the “I Am Autism” video going around on TikTok despite the fact it was made in 2009 and the board of directors agreed to take it down because it upset a lot of the community (and even some of the directors). Autism Speaks isn’t like that anymore. It’s upped its game and has progressively stopped with the fearmongering over the years, which indicates it’s going in the right direction.

    As early as 2012, quite a few representatives of the organization spoke out after the Sandy Hook shooting. They were adamant in saying that autism does not cause violence, and that many autistic people would be stigmatized as a result of that false claim. Does that sound like something that members of a hate group would say?

    I’m not saying AS is perfect, as they could do some more stuff to improve their reputation, but I don’t dislike them by any means. They’ve done a lot to help our community despite what people claim. I applaud autistics like Eileen who have joined the organization to represent us. Instead of writing hateful messages to her because of her opinions on a charity (that she personally works for and knows the ins and outs of), maybe do something to actively help the autism community?

    I really wish that people would do actual research before making extreme claims. The iilluminaughtii (or however you spell her name) video had a lot of misinformation and even promoted some dangerous ‘advocates’ in the autism community, but it gained millions of views. Even the autistic employee who resigned from Autism Speaks due to Suzanne Wright’s questionable speech in 2013 doesn’t think they’re a hate group. He wrote a very nuanced essay about it, called “My Time With Autism Speaks” (by John Elder Robison). Anyone who wants a more middle ground perspective should take a look at what he has to say.

    Again, thank you for speaking your truth and doing your best to counter misinformation in the autism world, Eileen. Always enjoy reading your blog!

    • Reply
      Noah
      2022-09-22 at 10:45 PM

      What information specifically featured in illuminatii’s video was false?

  • Reply
    Fred
    2022-10-20 at 11:00 PM

    Have a guess whose husband made the video for Autism Speaks?

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