Painting With Broad Brushes: Who Needs a Cure?
“You paint with too broad of a brush. You may not want a cure but the family that struggles with their aged out of the system non verbal in diapers and severe self abuse DESERVE A CURE. Open up your world and see others before you say Autism should not be cured.”
I received the above comment from the grandparent of an autistic child on my “What’s Wrong With Autism Speaks?” video last April.
The idea that my world is not “open”, that I do not think of or consider other autistic people or their families, admittedly hurt me. But ten thousand times worse than the hurt to my personal feelings was the despicable way this stranger spoke about nonverbal autistic people, so confidently asserting their status of non-personhood. Such hate demands response, and sadly, this belief is deeply entrenched in the minds of too many.
Considering that it’s April again, and I’ve been getting questions like this one, I felt that my response was worth sharing. and so I’m posting an edited and updated version here. Content warning for discussions of cure culture and ableism, including abuse and filicide.
You say family members deserve a cure– I say that autistic people and their families deserve better.
Firstly, I did not just say that Autism should not be cured: I said that many autistic people and their families do not think that Autism needs a cure, and also, that Autism can not be cured. My opinion is that focusing on a cure for Autism is harmful and unhelpful, but opinions mean little when what our science knows of autistic neurology says that Autism will never be curable.
Autism will never be curable because Autism is a neurological condition- a developmental disorder- not a disease. Autistic people are autistic from birth. It’s the way we developed and continue to develop throughout our lives. Diseases and illnesses can be cured. Developmental disorders can not. There is no ethical way to change the physical and neurological structure of the brain of a living human being.
Secondly, you say that the families of “non verbal in diapers and severe self [abusive]” autistic people deserve a cure. I say that the insistence on searching for a cure for Autism is not only futile, it is unfair to the very autistic people that you mention.
Discussions of a theoretical “cure” are all about the families of autistic people. When non-autistic people lead the conversation about hypothetical cures, the experiences of actual non-verbal autistic people are erased. When non-autistic people call for a cure, they speak of our alarming existence as disabled people, what burdens autistic people are on our families, how our disabilities make us less than fully human, how our lives are so pitiful as to be not worth living. This dangerous rhetoric, this culture of cure, has real world consequences for the autistic community, which we can see in the truly alarming rise in society-sanctioned filicide of disabled people over the last thirty years. You say family members deserve a cure– I say that autistic people and their families deserve better.
If we are talking about what people deserve: Autistic people deserve to have those millions of dollars that currently go to “research” be redirected towards services and accommodation for autistic people and their families. Currently, the vast majority of that research is focused on finding the “Autism gene”, or on developing a prenatal test for Autism.
Meanwhile, one in a hundred people on this planet have ASD, and two of ten of those people are non-verbal. All live with the burden of ableism, of living in an openly hostile society. Many are mistreated, abused, and oppressed and discriminated against. Autistic people are even murdered, usually by family, simply for being born disabled. Given the circumstances, the frustration of non-verbal autistic people is entirely understandable, and entirely human. And a prenatal test for Autism wouldn’t help any of those autistic people or their families.
The thing to know and understand about self harming behaviours in autistic people, non-verbal and otherwise, is that autistic people don’t self injure because it is an inevitable symptom of Autism, or to make the lives of their loved ones more difficult. Self-injurious behaviour is an expression of a frustration that is unimaginable to people who have never experienced it.
Non-verbal autistic people who can’t speak with their mouths and who have no other way to communicate may self-harm out of deep frustration, in an attempt to control their environment, in an attempt to self advocate. Now, what would happen if some of those millions of dollars currently going towards “research” (which isn’t helping any existing autistic people or their families at all) was instead poured into programs to help non-verbal autistic people communicate via alternative methods?
The thing to know and understand about self harming behaviours in autistic people, non-verbal and otherwise, is that autistic people don’t self injure because it is an inevitable symptom of Autism, or to make the lives of their loved ones more difficult. Self-injurious behaviour is an expression of a frustration that is unimaginable to people who have never experienced it.
Text-to-speech, AAC, the rapid prompting method, sign language– all of these alternative methods have the potential to give non-verbal autistic people the chance to express themselves. And the interesting thing about self-harming behaviour is that it greatly decreases as a person’s ability to communicate and make their needs known increases. Self-harming is an expression of being frustrated, misunderstood, and (as Carly Fleischmann has said) “trapped in a body [they] can’t control”.
Another very important thing to know about autistic people: Wearing diapers does not negate our personhood. Needing a caregiver, aid, or 24/7 supervision does not negate our personhood. Self injury and socially unacceptable forms of stimming do not negate our personhood. No matter what comorbid disabilities, conditions, or circumstances we may be dealing with, we are whole, real people who deserve the same dignity, respect, and civil rights as non-disabled people.
Now, back to the question of cure: Knowing that Autism can never be cured, and that the best we could hope for is a prenatal test to detect Autism in fetuses, it doesn’t really matter who does or who doesn’t think Autism “should” be cured. (It’s autistic people who should get to decide that, anyway). So instead, instead of spending millions of dollars trying to find a genetic marker or prenatal test (a goal that we will probably never achieve), I believe that we should focus on helping actual autistic people who are alive now.
Even if, somehow, magically, autism could be cured- there are so very many autistic people that believe it shouldn’t be. I also believe that a world without autistic people would be a world that has lost something. Autistic people are valuable. Autistic people deserve to exist. Our impairments and our struggles do not negate that. So, that leaves us with a simple conclusion- you’re stuck with us, and what we need is understanding, acceptance, and accommodation.
Along with providing the teaching and technology needed to allow non-verbal autistic people to communicate via alternative methods, putting the money that now goes towards “research” towards the area of “family services” would provide more and better therapies, accommodation, and education for autistic people. That money could also provide services, financial assistance, and respite care for the families of autistic people. Funds directed into these areas would have immediate and life changing impact, particularly for the autistic people and their families living at the points of intersection between ableism and other forms of marginalization, like racism, sexism, and homophobia.
Now that is the kind of fundraising that changes the world.
Image description: Three small signs hammered into the grass lining a paved walking path. The signs are from ASAN Vancouver's protest against Autism Speak's 2016 Walk For A Cure, and they read "Support not cure", "Please stop", and "I am NOT a tragedy".
Further reading
About non-verbal autistic people, and why it’s critical to presume competence:
Five Reasons Why Presuming Competence is ALWAYS a Good Idea
http://www.swiftschools.org/swifttalk/article/45/five-reasons-why-presuming-competence-is-always-a-good-idea
http://www.swiftschools.org/swifttalk/article/45/five-reasons-why-presuming-competence-is-always-a-good-idea
The Assumptions We Make
http://emmashopebook.com/2014/10/06/the-assumptions-we-make/
http://emmashopebook.com/2014/10/06/the-assumptions-we-make/
“Rethinking Your Beliefs About Autism”
http://emmashopebook.com/2014/05/19/rethinking-your-beliefs-about-autism/
http://emmashopebook.com/2014/05/19/rethinking-your-beliefs-about-autism/
Non-Speaking With a Lot To Say
http://emmashopebook.com/2013/10/17/non-speaking-with-a-lot-to-say/
http://emmashopebook.com/2013/10/17/non-speaking-with-a-lot-to-say/
I Have Nonverbal Autism. Here’s What I Want You to Know.
http://themighty.com/2015/04/i-have-nonverbal-autism-heres-what-i-want-you-to-know/
http://themighty.com/2015/04/i-have-nonverbal-autism-heres-what-i-want-you-to-know/
23 Ways To Communicate With A Non-Verbal Child
http://www.friendshipcircle.org/blog/2013/04/16/23-ways-to-communicate-with-a-non-verbal-child/
http://www.friendshipcircle.org/blog/2013/04/16/23-ways-to-communicate-with-a-non-verbal-child/
A list of some nonverbal autistic advocates and their blogs, webpages, or books:
Emma Zurcher-Long
http://emmashopebook.com/
http://emmashopebook.com/
Henry Frost
http://ollibean.com/author/milesfrost/
http://ollibean.com/author/milesfrost/
Ido Kedar
http://idoinautismland.blogspot.ca/
http://idoinautismland.blogspot.ca/
Amy Sequenzia
http://nonspeakingautisticspeaking.blogspot.ca/
http://nonspeakingautisticspeaking.blogspot.ca/
Naoki Higashida
http://www.amazon.com/Naoki-Higashida/e/B00C7AV0KK
http://www.amazon.com/Naoki-Higashida/e/B00C7AV0KK
Carly Fleischmann
https://www.facebook.com/carlysvoice
https://www.facebook.com/carlysvoice
Dora Raymaker
http://doraraymaker.com/doraraymaker.com/
Peyton Goddard
http://peytongoddard.com/index.html
Sharisa Joy Kochmeister
http://sharisa-kochmeister.blogspot.ca/
http://www.users.dircon.co.uk/~cns/sharisa.html
http://doraraymaker.com/doraraymaker.com/
Peyton Goddard
http://peytongoddard.com/index.html
Sharisa Joy Kochmeister
http://sharisa-kochmeister.blogspot.ca/
http://www.users.dircon.co.uk/~cns/sharisa.html