Today is (or perhaps was. I am late today, as usual) a group writing day for Autistic Wish List (#AutisticWishList), sponsored by #BoycottAutismSpeaks. Mainly, people were encouraged to use Twitter but, as you may have noticed, I have a hard time confining my words to 140 character bites.
The idea of Autistic Wish List is to share our holiday wish list of what we want from autism advocacy organizations (such as, but presumably not limited to, Autism Speaks.) It is a holiday wish list filled with year-round requests.
So, what I want from autism advocacy organizations this holiday season, in no particular order:
Nothing About Us Without Us! Many advocacy organizations have few or no Autistic people in their leadership. Advocacy organizations for the Blind are filled with and led by Blind people. Advocacy organizations for the Deaf are filled with and led by Deaf people. Organizations that advocate for disabled people need to be filled with and led by people with that disability or group of disabilities. Who knows most what we need? Who knows most about the lived experience of autism? Who can communicate with our voice? Quite obviously, the answer to those questions is us. Some autism advocacy organizations were started by Autistics. Some are opening their doors more and more to Autistics, including in leadership positions. Some are woefully lacking in Autistic voices. This holiday season, I wish for Autistic voices to be the loudest in all matters that affect our lives.
Awareness of and real support for Autistic adults! Autism does not end at age 18 or 22 or any arbitrary age. An autistic brain does not suddenly become a neurotypical brain after a certain number of years. Autistic children grow up to be Autistic adults. No amount of talk about “tsunamis” or “epidemics” can change the fact that there are anywhere from 2 million to 4 million Autistic adults in the United States alone. Autism advocacy organizations need to start talking about us, too — and not as the “coming crisis.” We are already here, we have always been here, and the crisis has been in full swing for a very long time.
Autistic adults have a much higher rate of poverty and unemployment than the general population and I can only think of a couple of autism advocacy organizations that are even talking about that fact, let alone doing anything to mitigate it. And the ones who are talking about it can’t be blamed for not making much of a dent in the situation because they are small, grassroots organizations that don’t have the millions of dollars of funding that larger organizations hoover out of local communities without giving back.
I want to see real employment assistance for Autistics, not just sheltered workshops or an assumption that we are all well-suited for computer programming work. I want to see studies on the number of homeless Autistics, followed by real action to remedy the nightmare for those suffering in unrelenting poverty. And I want autism advocacy organizations to acknowledge that this is a bare start which must be followed up with efforts to assist Autistics who are struggling with barriers to healthcare access, exploitation, violence (sexual, domestic, and otherwise), lack of accommodations in the workplace and university settings, bullying from neighbors and colleagues, and so much more.
Acknowledge more than Autistics and Parents of Autistics — some people are in both those categories at once! Too often, I see a silencing of the voices of Autistic parents. (Remember, the autistic community is the community of those who are #ActuallyAutistic — those who are personal stakeholders in autism issues because they are the ones living actually autistic lives. The autism community is the community of everyone for whom autism is an important issue: parents of Autistics, Autistics themselves, teachers, doctors, therapist, legislators — everyone who is a general stakeholder in autism issues, either because they are Autistic themselves or because someone Autistic (or many Autistic people) is/are important in their life in some way.)
So often, when someone says they are an Autistic parent, people hear “autism parent” and assume their child is Autistic but they are not. Hear this now: there is no such thing as an “autism parent.” If your child is Autistic, you are not an “autism mom” or an “autism dad.” You are parenting a child, not autism. You are the mother or father of an Autistic child (or a child with autism if you can’t bear identity-first language.) I’m sorry it takes more words to say it that way, but when you call yourself an “autism mom” not only are you saying something that linguistically means you are raising autism, not a person, but you are appropriating a piece of your child’s identity for yourself.
What’s more, you are muddying the waters for Autistic parents who are getting very little recognition and support — how can they find one another when the search engines are filled with autism parents? Autistic parents need that recognition and support because their path is twice as difficult. They need support as parents and they need support as Autistics. Too often, as soon as the parents and others who were supporting them learn that they, themselves, are also Autistic, that support vanishes along with any respect for their dignity as parents or even human beings. Autism advocacy organizations need to acknowledge the large number of parents who are #ActuallyAutistic and cherish them as valuable resources — adult Autistics with parenting experience. What a goldmine that is! What a tragically untapped resource.
Stop calling us burdens, lepers, and worse! If we are burdens, then every child is a burden. We are not broken, we are not missing. We are right here and need love and acceptance right now. The hyperbolic rhetoric of crisis and fear must stop. It is dehumanizing (both to us and to those with Hansen’s Disease (what used to be called leprosy.) Our parents are not saints for taking care of us; they are parents, doing what parents do. No child is a guarantee of anything and a loving parent’s job is to accept the child they were given and mentor that child to be the best they can be while remaining true to themselves, not struggling to become a clone of their parent or fulfill any other unattainable dream set forth more for the parent’s ego stroking than for the child’s benefit.
The rhetoric of fear leads vulnerable parents down a dark and dangerous path that, for some, has led to murder or murder-suicide. The rhetoric of fear leads parents to despair. The rhetoric of fear causes children to suffer. The rhetoric of fear costs adults jobs and relationships. It is time to jettison this sort of doom talk . . . this sort of hate speech, if I may. For what else could I call a habitual way of talking about autism and Autistic people that ends in suffering and death for those who are discussed in such an objectifying and destructive manner? It is hate speech and it belongs absolutely nowhere in the fund-raising or awareness-stirring toolbox of responsible, ethical autism advocacy organizations.
Value Autistic lives . . . ALL Autistic lives! Autism advocacy organizations must stop playing divisive politics. I watch different segments of the Autistic population thrown under the bus repeatedly and it must stop. It is never okay to say that Autistics who speak are just fine but those who don’t speak require therapy “for their own good.” It is never okay to count us all in order to declare large numbers of Autistics for funding purposes yet turn around and tell a segment of us that we are not allowed to have a voice because we aren’t the ones you are fighting for — if you count us, you must listen to us.
It is never okay to say that autistic genetics are important to society because some of us can build or create or design things and thus we must “put up with” those who will never be productive. Autistic genetics are important to society because biodiversity — neurodiversity in this case — is important for the genetic health of any species. We are important because we exist and we should be valued because we are human. Would you dismiss the value of a neurotypical person who spent their life working at McDonald’s and loving their family? What? But they will never design an Eiffel Tower or win a Pulitzer Prize! Why should you value them? . . . what’s that you say? Oh, yes. That is exactly why you must also value us, regardless of our productive output.
You must value and protect all Autistic lives just as you value and protect all other human lives. How we move, how we communicate, what we communicate, what we do or don’t produce in the marketplace of things and ideas — do not base your respect for us on things like these. Value us because we are human beings.
Stop ignoring Autistic People of Color! Autism is not all children, not all male, and not all white. But when I was doing research for my upcoming book, The ABCs of Autism Acceptance, I had a very difficult time researching issues of Autistic People of Color. I found a little bit about Black Autistics, even less about Latin@ and Hispanic Autistics, and pretty much nothing about any other Autistic People of Color. Most autism advocacy organizations aren’t talking about People of Color, there are very few People of Color, Autistic or otherwise, in leadership roles in organizations, and there isn’t much to encourage People of Color to get involved. One terrific exception is the Autism Womens Network (AWN), which has several women of Color in leadership roles and which is working toward releasing an anthology of voices of Autistic People of Color. Other organizations would do well to follow AWN’s lead here.
There is so much more I could add to my holiday wish list, but I’ve offered a big bite for autism advocacy organizations to chew on for this year. We can work on meeting more goals in next year’s holiday wish list. So listen up, autism advocacy organizations (especially Autism Speaks!) and get rid of the puzzle pieces and dehumanizing references, stop silencing our voices, stop pitting us against each other, stop sucking all the resources out of local communities without returning value. Respect our humanity.
It seems so little to ask. Yet the fact that I must ask for these things shows the massive scale of the struggle we are facing. I hope I get even just one thing from my list this holiday season. I would rejoice to get every item listed here, but could I at least just get one? Don’t make me beg for our rights and dignity — can’t you see the irony of that? Have a little holiday spirit and good will toward Autistics, please.