Since the group of autistic self-advocates have disbanded and had no contact with Next for Autism, I would like to make a personal statement to reflect on the Color the Spectrum event.
To me, this Color the Spectrum event was about a lot more than Next for Autism and their really awful responses to autistic people. I would like to explain why.
I know as an autistic community generally that we haven’t been heard. At all. In any capacity. People haven’t listened to us. People haven’t learned. No one has responded to us quickly or transparently about things that are about us without us.
For the first time, at a large charity event on this livestream, I heard the words “autistic person.” Not just once or twice, but consistently throughout the entire program. An explanation was given as to why towards the end of the livestream. That change came about by one person listening to one autistic person. I know a lot of autistic people will consider that to be the bare minimum and not an important change, but I never thought I’d ever hear any non-autistic person say “autistic person” in a big event like that, about autism. I never thought in my lifetime I would hear those words. In my world, it’s monumental and nearly historical. It has never happened before.
This is something that I had to think about:
How many autistic kids watched that show last night? How many parents of autistic kids watched it? And saw identity-first language being used consistently? How many people saw an autistic person (@autistamatic) telling people to listen to autistic people and work with us instead of “for” us? That we have blogs and videos and can educate people about what it means to be us?
Autistic people have every right to be angry about all of this. I get the anger and frustration about this entire thing. I’m angry and frustrated too, that many autistic people had to spend many days and enormous effort to get this change to happen, and that we weren’t allowed to be transparent about this process at the time. There is no tangible benefit to the advocacy that happened right now. And the autistic community deserves an apology and deserves acknowledgement for the harm that has been caused both by Mark Rober and Next for Autism.
I just want to acknowledge that those changes to the event were real and they really did happen, and someone (Mark Rober and likely the production team, honestly) did listen and change.
That has never happened before.
That is a first step. A very, very small first step. But it’s still a step.
I just want to let people know that yes, it is possible. It is possible for someone to listen. It shouldn’t hinge on one autistic person’s privilege and access to do it, but it’s possible. I’ve seen it firsthand. And that’s something that I’ve literally never seen before. It is by far the bare minimum that is owed to us, but it is something. It is a start. In 5 days, one autistic person changed nearly an entire event because someone listened. I want autistic people to know that we can be heard, and things can change. It will not happen overnight and we will not be happy with every change and the pace of every change, but it’s at least possible. And I honestly don’t know if I thought that was possible before.
I hope that Mark Rober apologizes to the autistic community and considers working with autistic people in the future to attempt to make up for the harm that was done. He did listen to almost all of our suggestions and implemented them in the livestream, when the planned event originally had no autistic representation to begin with. I hope that he attempts to reconcile with the autistic community by making a public statement regarding the harm done and his role in it, and that he boosts autistic voices and supports autistic-led charities in the future.
On Next for Autism and Lack of Autistic Voices
I know Next for Autism may not follow through with what they were recommended. I absolutely know that. And honestly, if they truly cared, they would give all of the money fundraised to autistic-led organizations to begin with.
At the time, I didn’t have an ounce of power in the situation to ask for that without fear of them deciding to just ignore us anyway, considering that they literally never directly communicated to me in any form. And the fact that they are merely accepting the terms (and honestly, barely doing that) is telling.
If you’re a non-autistic person reading this, consider how absurd it is that two thirds of those funds are still going to non-autistic led organizations. That this nonprofit chose to keep doing that, after hearing the outcry from the autistic community.
I also know that if Next for Autism doesn’t follow through on the recommendations that were given, the autistic community will hold them accountable for their actions. And I know the autistic community will absolutely be watching what they do – and yes, they will be keeping receipts. It is in Next’s best interest to be as transparent as possible to the autistic community going forward.
If Next for Autism doesn’t change right now, in this moment, they will become obsolete. This is because more people outside of the autistic community are finally getting the information that autistic adults exist and that autistic-led organizations exist. Next for Autism does not serve the autistic community, and they certainly haven’t been helping autistic people by supporting and funding ABA therapy.
Future Directions in Autistic Advocacy
I get that some autistic people disagree with the decision that happened. And I’m not saying I was the one who was supposed to make it.
In the future, I’d personally really love if some sort of response team could be put together from the autistic community for when something like this ever happens again, so that more voices and diverse voices can be involved in the conversation. We didn’t have that this time. This time it was just one anonymous person reaching out to me, saying he had contacts to people at the event. I had to decide then and there what I was going to do, without further context, and I decided to go in. That’s on me.
To be clear, the CEO of Next for Autism never once contacted me or anyone else directly besides the anonymous autistic person. Not once. I don’t believe that if we, as a community, had continued to boycott that they would’ve done anything at all. I honestly think the CEO is simply too bad at her job for that (this is just my opinion obviously).
I have a very small sliver of hope that someone within their organization has heard us. I don’t know if that means anything will change, however.
If this situation has told non-autistic people anything, it should be this:
1. You should not be doing anything “for” us that excludes us. You should not take power to do something “for” autistic people, and should instead relinquish that power and platform to autistic people themselves.
2. Organizations who continue to ignore and actively harm the autistic community will become obsolete because our voices have been heard and we are not going to be silenced anymore. People outside our community are finally listening.
3. The autistic people I know are some of the most selfless human beings on the planet, and I know that many of them will break themselves mentally, physically, and emotionally just to make a tiny sliver of change in the system. We are persistent.
4. We’re not asking for a tiny sliver of change anymore, we’re asking for the entire non-autistic platform. Small change from autism organizations and non-autistic people in general will never be enough to lead to autistic liberation.
To Next For Autism:
Autistic people do not trust you. I do not trust you. You continue to openly support ABA therapy when it is traumatizing for autistic people. Stop funding organizations which support, fund, and promote ABA therapy. And if you think “Well there’s just no other way!” there are lots of other ways and you only need to literally read my blog to find out what those “other ways” are (occupational therapy, speech therapy, physical therapy, AAC, sign language, headphones, sunglasses, and much, much more).
I hope you will follow through with your promise of implementing the bare minimum of recommendations and actually give selection power to autistic people, not simply as an “advisory committee” as is currently stated on your website. I’d recommend hiring @MorinikeGO and @RealKaristina (twitter handles) as autistic consultants if you truly want to do better.
Stop speaking for autistic people.
– Autistic Science Person (only)
Reflections of other autistic self-advocates: