Image text reads: "Autism awareness has failed autistics. Autism awareness has failed families of autistics, even if many families are in denial about this failure." (The burgundy text is on a pink marbled background.)

Your Autism Awareness Has Failed

It is almost April and it is the time of the year when Autistics have to remind the rest of the world that we are human beings, that we have human feelings.

We need to do that because, more than in any other month, April is when we are talked about, bashed, blamed and demonized, without being asked it feels being erased of our own lives.

It is when the most hateful autism advocacy organization – known as Autism Speaks – will double down on the rhetoric, telling all the world that Autistic people are lost, suffering and causing pain to our families, that we are burdens on society’s resources, that we will never be able to contribute to humanity (unless we endure hours of torturous training, known as ABA, so we can learn how to comply with a majority that will ignore, shun, dismiss and hate us).

Autism Speaks and its very savvy marketing machine will raise millions of dollars by telling parents how desperate they should feel that their child is not the child they were supposed to have. The message is absorbed, and even embraced, by parents who will create “teams”, walk in circles, donate money and go home without the promised help and the accurate information they need.

Other advocacy organizations led by, and directed at parents will follow Autism Speaks lead. Those organizations don’t use hate as their main tool to raise money but still rely on the same rhetoric of despair. With some positive words thrown in their donation request letters, they still deny us a voice in the conversation about us.

Image text reads: "Autism awareness has failed autistics. Autism awareness has failed families of autistics, even if many families are in denial about this failure." (The burgundy text is on a pink marbled background.)
Image text reads: “Autism awareness has failed autistics. Autism awareness has failed families of autistics, even if many families are in denial about this failure.” awnnetwork.org (The burgundy text is on a pink marbled background.)

Autism Awareness has failed Autistics
Autism Awareness has failed families of Autistics, even if many families are in denial about this failure.

Just look at how many of us, who could be employed, are still denied opportunities.
Just look at how many institution-like communities are being developed to isolate us by using fear – the fear parents have that nobody will “care” for their children – in order to “unburden” society with our existence.
Look at how communities still lack resources, services and supports for Autistic children and Autistic adults.

Look at how much more the still small, but growing, Autism Acceptance Movement has accomplished by promoting and valuing Autistic voices and Autistic lives.

Autism Awareness only uses so-called “deficits” of Autistic people in their campaigns. The list tells the world that

We CAN’T do what “real people” do.
We WON’T be what we dream of being.
We will NEVER accomplish anything that can be considered valuable.

Autism Awareness divides us in a “good” group, which is promptly ignored and dismissed as not really Autistic, and a “bad” group – people like me who need extensive supports – which is promptly dismissed as too damaged and not sentient enough to be heard.

The world doesn’t need to BE AWARE of us because the pathologizing language, the deficits lists only make the world BEWARE of us. You can still participate in the Autism Awareness Month, if you promote awareness without blaming us for who we are, without blaming us for society’s unwillingness to accept us as equals. By refusing to use a list of deficits we supposedly have, you can raise awareness about:

.The lack of inclusion in schools, despite studies showing that ALL students benefit from inclusive education.

.The lack of support for all forms of communication, because only one method doesn’t fit all.

.The scarcity of services and supports for Autistic children and Autistic adults who need a lot of them. I am one of such Autistics and I have a pretty good life and, currently, great human support. I am lucky, an exception though.

.The lack of respite care for parents of Autistics who still don’t have the supports they need to fully participate in society. Yes, sometimes it is hard to be Autistic, sometimes it is hard for parents when some co-occurring conditions take over and overwhelm their children and the whole family. The need for respite is not shameful, in the same way that being disabled and needing help is not shameful.

.The disrespect shown at us when our private moments and our image are used as a way to gather sympathy for others, while our dignity and our self-determination are ignored

.The lack of job accommodations. A – still – very small number of companies have proven that Autistics can work and are good at many jobs.

.The disrespect from organizations that promote conferences and reserve the brightest spot to people who don’t believe we are fully humans. No matter how they justify that, these people still make money by demonizing us.

.The “crumbs of goodwill” thrown at us by the same organizations that gush all over people who dislike the Autistic community.

.The many conference organizers ignoring that most Autistics, being part of the disabled community and therefore poor, could benefit from paid lectures and paid essays. We have the lived experience that can help future generations.

.The fact that most of the money raised by the current model of Autism Awareness is used to promote research and studies to erase our voices, our participation and our existence.

Most importantly, you can raise awareness about the lack of awareness people who insist on Autism Awareness are about Autistic people and Autistic lives.


Amy SequenziaAbout the Author, Amy Sequenzia

19 thoughts on “Your Autism Awareness Has Failed”

  1. Katherine Lawrence

    Thank you for this. I will NOT “Light It Up Blue” on Saturday and I will take a great deal of care to not wear a single speck of blue. I loathe everything Autism $peaks stands for – they say “It’s time to listen” but we are the people they WILL NOT listen to, who when we speak (be it through spoken word, signed words, typed words or any other form of communication) stick their fingers in their ears and go “la la la CAN’T HEAR YOU”. I am Autistic, I am human, I am not missing.

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  3. I appreciate what you are saying, and I know that people with autism can do amazing things (like my BIL, who is in college).
    However there really ARE some people for whom Autism is a nightmare. My son cannot be in large groups without becoming violent. He slashes the throats of stuffed animals and obsesses over dead people. He has a therapist, a psychiatrist, and goes to a special school. He is on five different medications and despite two of them being sleeping pills be doesn’t sleep. We all sleep with our doors locked because we are genuinely afraid for our safety and yet every IEP the teachers want to discuss inclusion (even though last time he hospitalized a child) and his psychiatrist doesn’t take his outbursts seriously. I’ve tried taking him to the Hospital myself and the people tell me his insurance won’t cover a stay because he isn’t violent enough. He’s injured several people but apparently he has to attempt murder?
    What do you say for people like him? Autism Speaks is terrible because they imply there is no hope ever, but I think it’s also dangerous to promote the idea that there is ALWAYS hope. There isn’t always. I don’t need a pep talk, I need to have access to a living facility where my son can go so I don’t have to be afraid that he’s going to stab me in my sleep.

    1. You are blaming the autism for this? Autism is a Developmental disability, that has several co-occuring disorders. Autism itself does not cause violence. That is where you will always be wrong. There are other Co occuring disorders that can but autism does not. Don’t blame the autism.

  4. Beautifully written. My son is autistic, and I will always fight for his right to have a say in this world, and support his ambition to be what he wants – currently a world traveller/ piano tuner. And why the hell not? I am sharing this as one of the most important posts everyone should read in April. My stance in April is #notaburden

  5. Thank you for sharing now I understand some things I was lost but now I don’t and what do you tell me about walk un red

  6. I appreciate the Autism acceptance that you are talking about and I love and appreciate all of my friends and students who have Autism! I would like to point out however that ABA therapy has come a long far way away from what I’m sure years ago was torturous behavior modification by untrained individuals. ABA isn’t just for Autism and it does not strive to stamp out people’s individuality, at least not when done by reputable individuals who are ethical and caring. When I conduct ABA therapy with my students my main focus is to teach communication skills, and just like any other teacher I provide instruction. All ABA should be doing is providing positive reinforcement for behaviors that we want to see more of in the future ( behaviors like sign language, vocal communication, listener responding, self care, etc.) and withholding reinforcement from behaviors that are maladaptive such as aggression. Any person who needs help learning something, with or without an Autism diagnosis, can benefit from ABA practices, for example it can help people learn to speak new languages, help employees at companies be more motivated and productive at work, or even help people learn to play musical instruments. In the past the field of ABA went through some dark days and people were mistreated or abused, but this is not the case today with reputable board certified companies who comply with ethical standards. My kiddos run to me when I arrive to their sessions, give me hugs, high fives, and literally smile giggle and jump up and down with excitement as we play together and utilize the natural environment combined with positive reinforcement to increase comminication and self help skills! I love my kiddos so much, they are each unique and have so much to offer the world. They don’t need to be changed or cured, they just need some help learning to communicate their wants and needs and learning to be as independent, successful, and self sufficient as possible. I do celebrate Autism awareness month, in order to bring more awareness so that services and funding will hopefully become more accessible and so that hopefully people with Autism will be more accepted in the community and valued as equals. 🙂 Just some thoughts from an ABA therapist who would never do anything to emotionally harm or otherwise “torture” the clients whom her heart beats for <3 much love!

  7. Connie Sealey-Holczer

    Perfectly timed for us who are parents of a 13 y/o autistic who has been so socially rejected as of late, we are tired but foraging forward & your post has invigorated my will to continue to fight. Peace …we have never lit the blue light because we have always believed Autism Speaks to be fraudulent.

  8. I was just looking for infographics for April, and was really appalled by how depressing most of them are! There were so many telling me what percentage of people with autism will become unemployed, need lifelong care or have multiple mental health problems, and very little about how to support friends or family.

    I work in a small clinic in Cambodia as a speech and language therapist. A lot of parents have a limited understanding of what Autism is, even once (if) their child receives a diagnosis. I was really looking for some straight-forward information about what Autism is, how they can support their child, and also a bit about the causes (I think a lot of parents here think they’ve somehow caused their child’s condition, however many times we tell them this isn’t the case). I thought most of what was out there was total crap, and would terrify anyone reading it!

    If you know any positive infographics, please let me know. Is your site running any further events or do you have any resources for us to use during April?

  9. Thomas Sutcliffe

    Excellent post. The West Norfolk branch of the National Autistic Society will be holding a Positive Autism Awareness Conference on April 15th, which I (as one of two autistic adults who are on the committee) will be helping ro run, while also putting on a photographic display by way of showcasing one of my own talents. The foregoing is diametrically opposite to what you have outlined as the Autism Speaks approach – the emphasis is on positivity and there are autistic people playing important roles in the organisation of the event.

  10. Thanks for this!!!! I am an autistic individual who is trying to become a music therapist!!!!! This is exactly what we go through each time April hits.

  11. Thank you thank you thank you. As someone who was told I wasn’t autistic enough if I didn’t want a cure — I’m so thankful for this real information to share and help awareness, acceptance and inclusion.. My first thought when asked if I was going to light it up blue — why would I do that? I’ve been aware of autism my whole life, I live with it. And now I realize the movement that happened in the 2000s have left folks aware of autism by no smiles, puzzle pieces, and pity Not the movement I remember. So much more advocating to do. <3

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  13. I agree, you have put into words everything that made me uncomfortable about the concept of Autism Awareness Month. I started a petition on change.org asking the UNITED NATIONS to change the wording FROM Autism Awareness to Autism Inclusion. I was saddened by the lack of response from the autism community, less than 150 people signed. I am holding an event in Sydney with our largest bookstore and rather than me talking about autism, I have invited 5 young people on the spectrum to speak and share with us their hopes and dreams, their achievements and challenges. I want to give them a platform to talk about themselves rather than passively sit back and have people talk for them and about them. The youngest speaker is non verbal but highly intelligent and will be communicating via her iPad. They are so excited about this opportunity, that’s what we need more of, our children and adults leading the conversation, telling us what they want, helping them to develop their skills and talents. I will post video highlights after the event on April 24 on my Facebook page ‘Dealing With Autism’. Bravo on a well written piece. I wish you much peace and many blessings!

  14. I am a statistic – 47 years old, bullied out of every legit job I have had, my accomplishments belittled, discredited or stolen by vicious NT’s and being told I am too masculine and my only option is to accept the worst or least, because there’s nothing out there for “people like me.’ I have gone for help and it seems like other autistic people who call themselves advocates are telling me to settle. As my parents played martyrs in public but were abusive behind closed doors, I am forever set up in a life where I am marginalized and I can’t get help and it is just a matter of time before I am homeless. I am sick of being told people I have not even said two words to already know I am on the spectrum and I have BPD, I am sick of having my disability walk into a room ten minutes before I do. I am sick of having all these gifts I cannot monetize, and I am sick of being told I will still be seen as ugly and freakish to the rest of the world.

    I have spent my whole life trying to prevent what has happened to me, from getting good grades, to getting adjustments to my physical appearance and working out, to building a freelance portfolio anybody would be pleased to have. I have decent friends. But I will never see my dreams of financial stability or a relationship with a man who is my equal.

    I give up.

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