Image description: A youtube comment posted by user “grandmasbabees”. Their avatar is a family portrait featuring a white multigenerational family. The message reads: 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.
Above is a youtube comment that I recieved on my What’s Wrong With Autism Speaks? video. Below is my response:
Hi grandmasbabees. Firstly, I did not say Autism should not be cured: I said it can not be cured, and that many Autistic people and their families do not think that Autism needs a cure. 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.
The reason that Autism will never be a curable condition is because it is a developmental disability. Autism is a neurological condition, not a disease. Diseases and illnesses can be cured. Developmental disorders can not. There is no way to change the physical and neurological structure of the brain of a living human being, and so there will never be a cure for developmental disabilities.
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.
By making discussions of a theoretical “cure” all about the families of Autistic people– by focusing only on how hard it is for the neurotypical family members and by insisting that they deserve a cure– you are erasing the experiences of all the actual non-verbal Autistic people. You say family members deserve a cure– I say that Autistic people, and their families, deserve better.
Autistic people deserve to have all those millions of dollars that currently go to research to be redirected towards services and accommodation for Autistic people and their families. All that “research” is focused on finding the “Autism gene”, or developing a prenatal test for Autism. Meanwhile, one in a hundred people on this planet have ASD, and many of those people are non-verbal and frustrated. Many of these people are being mistreated or even murdered, and their families are struggling. A pre-natal test for Autism wouldn’t help any of those Autistic people or their families.
The thing that we all need to understand about self-harming behaviours in non-verbal Autistic people is that it Autistic people don’t self-harm 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 neurotypical people.
Non-verbal Autistic people who can’t speak with their mouths and who have no other way to communicate will self-harm out of deep frustration and in an attempt to control their environment. Now, what would happen if 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?
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 decreases exponentially as a person’s ability to communicate and make their needs known increases. Self-harming behaviour is not inevitable in Autistic people, it is an expression of being frustrated, misunderstood, and (as Carly Fleischmann has said) “trapped in a body [they] can’t control”.
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.
Autism can never be cured, and since the best we could hope for is a pre-natal test to detect Autism in fetuses, it doesn’t really matter who does or who doesn’t think Autism “should” be cured. So instead, instead of spending millions of dollars trying to find a genetic marker or pre-natal test (a goal that we may never achieve anyway), I believe that we should focus on helping actual Autistic people who are alive now.
You are right. I don’t think that Autism needs a cure, even if it could be cured. I think that Autistic people need understanding, acceptance, and accommodation.
I believe that Autism organizations should be putting money towards providing what Autistic people need to communicate, learn, and grow into healthy, happy Autistic people, and on providing the assistance and services that the families of Autistic people need to thrive and be healthy.
I know that Autism Speaks does a terrible job of being a charity, and that their message of ignorance, fear, and hate actively hurts Autistic people, and that Autism Speaks perpetuates cure culture and the search for cure or medical treatments for Autism to keep parents desperate and generate money.
I also know that messages like yours come from a place of emotional hurt, so I don’t take them personally. While acceptance is the hardest topic for the neurotypical family of Autistic people to understand and accept, I am glad to have the chance to address it.
Speaking of worlds opening up, I feel like you probably haven’t read any of the writings by the “severely autistic” non-verbal Autistic advocates that I linked to in my video description. If you are interested in opening up your world and seeing what the Autistic community is saying about Autism Speaks, cure culture, and acceptance, you can use the resources below as a starting point:
Amy Sequenzia
http://nonspeakingautisticspeaking.blogspot.ca/
Amanda Baggs
http://ballastexistenz.wordpress.com/
Henry Frost
https://ollibean.com/tag/henry-frost/
Dora Raymaker
http://doraraymaker.com/doraraymaker.com/
Carly Fleischmann
https://www.facebook.com/carlysvoice
Ido Kedar
http://idoinautismland.blogspot.ca/👏🏼👏🏼👏🏼👏🏼 beautifully said
Thank you. Thought I’d bring this one back for April.
