Awesomely Autistic, Awesomely Distinguishable
I have written quite a lot about ABA (Applied Behavior Analysis), which I call Autistic Conversion Therapy. The official language of the program is “to make Autistic children indistinguishable from their peers”. Every time I write about it, I see comments that go from agreeing with me, and supporting the points I make – sometimes with personal stories of PTSD caused by ABA – to disagreement and outrage, to hate messages.
Text reads “Autistic, awesomely distinguishable ~Amy Sequenzia” The image is a white graphic with pink and teal striped border and large quotation marks in teal above the text.
The people who disagree with me usually say that ABA is what helps their kids learn things like “buttoning their shirts”, or “safety”, or “life skills”. They claim that they don’t want to change who the kids are, even if they say that they want the children to be accepted by a society that will only accept them if they look less Autistic.
As a friend says: let that sink in.
I have many friends who are parents. Some are Autistic parents of Autistic children. Some are non-autistic parents of Autistic children. I love to see young Autistics learning about themselves, learning about Autistic culture, and growing being their awesome Autistic selves.
I love even more when I see them thriving as they (and their parents) openly reject ABA. Even if they are not aware of this, they are debunking every excuse ABA proponents give to justify the awful practices of the “therapy”. They do this by simply being who they are.
I asked three young Autistics for permission to write about them. There are links that I think you should check – because I think you should listen to their voices.
I don’t know if they can – to use one of the ABA proponents favorite “reasons” – dress themselves without help. This is not something I, or you, need to know. Needing help is not shameful. I need a lot of physical assistance, and this does not devalue me as a human being.
I don’t know how overwhelmed they get when the – often – inaccessible and unaccepting world becomes too much for their senses. I don’t know if they experience meltdowns and shutdowns. Most Autistics I know do, including me. If they do, those moments remain, as they should, private. Having a meltdown, or needing to be alone and “away from the world” from time to time does not devalue us as human beings.
These young Autistics are growing, learning, thriving and being themselves without being forced to look less Autistic, without having to comply with normalization.
Emma Zurcher-Long is 14 years old, typing her ideas when her spoken words don’t reflect what her brain wants to convey. She is taking classes that are ahead of her age group and she is a co-director, and main subject, in a documentary.
She values herself, and her voice. She is learning about herself without people telling her that being Autistic and having to find a different way to express herself is shameful. She has a lot to say, she is saying what she wants, and she has a film to show that.
Wisdom, self-knowledge and self-advocacy: these are life skills.
Emma is awesomely Autistic, awesomely distinguishable.
Brooke is 13 years old. She likes dancing and singing. She likes to “script”, something some Autistics do that helps with interaction, initiation, and with coping with stressful situations and anxiety. She has plenty of empathy – something Autistics usually have in excess, which makes expressing emotions very overwhelming – and is learning, in her own time, to show this, while regulating herself. She is learning, in her own time, to communicate in a way the majority understands. She is also learning, in her own time, to express her feelings when she wants people to know them.
Brooke did have ABA earlier in her life but her self-knowledge has improved from the moment she was not forced to comply, or forced to “act normal”.
Brooke said this: “I like to sing and dance and almost anything. I like being autistic.”
She also said she was “all done now” when she had nothing else to add.
Self-advocacy, and finding her own way, her own time: these are life skills.
Brooke is awesomely Autistic, awesomely distinguishable.
Adam Wolfond is 14 years old and non-speaking. He learned how to type through FC (Facilitated Communication), with initial support of his hand and wrist. Today he has several facilitators, with different levels of support. With at least one of them, he only requires a light touch on his back.
Adam wants to be respected for who he is. He is learning and growing without being forced to look and act “less Autistic”. He makes videos of himself, how he experiences the world, and how he learns about safety, like crossing busy streets.
Finding his own way of learning about safety, self-knowledge: these are life-skills.
Adam words: “The way I am is awesome and I am questioning the want of others to change us to be like them”.
Adam is awesomely Autistic, awesomely distinguishable.
These three young Autistics make me happy. They are proud of who they are, they are spreading positivity about Autistic culture.
They are awesomely 100% distinguishable from their peers and this is one big part of Autistics demand to be accepted as we are.
Note: it is not a coincidence that Emma, Brooke and Adam have supportive and accepting families that listen to Autistic adults, and are not afraid to acknowledge possible mistakes they’ve made, then correct them.
They want the world to respect their children, so they respect their children’s voice.
Emma’s documentary – Unspoken – FB page http://bit.ly/29Z6fNv
Emma’s words (Only one example. You can explore the blog for more) http://bit.ly/2afyAEY
Diary of a Mom blog (Written by Brooke’s mom. What is posted about Brooke has Brooke’s permission)
https://adiaryofamom.com
Diary of a Mom FB page: http://bit.ly/2azAdJV
Adam’s video safely crossing the street and explaining what helps him focus
Adam’s video explaining how he experiences the rain (with awesome stimming!)
More videos in that You Tube channel
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I agree with you fully that autistic people should be allowed to behave as they please as long as it isn’t causing harm It is a huge problem that we as society, as individuals have issues with different behavior. But it is also a problem for those who act different, are different. There are times when it is down right life threatening not to pass, and for protection, safety, life reasons, learning to pass, eye contact, acquiescence can be vitally important. The recent case of Hannah Cohen show that in a blistering way, but I ve seen this happen many time in the last 20 years.
For those who cannot do something, there is no shame. It’s a fact of life, but it does behoove those who can, to learn to do them, such as dressing self, Being dependent on others has pitfalls and dangers, so that more one can do, it lessens those possibilities. I would not throw ABA out the window, but temper it as it does teach many who have problems with typical behaviors how to do them which could be essential in life.
This has become a mounting concern of mine as I’ve seen society change over this time to get harsher than ever for those who need help, are different, not able to do things or do them differently. The current political climate is leading to a frightening tipping point that may happen soon.
That my now adult child can “pass” though he hates to do so, has given him things he has so wanted even beyond being able to act as he pleases and feels more natural doing but having to lose his hard won freedom, autonomy, and self sufficiency. They are not overrated to him, as he’s lost out many times on these things and had to go back to dependency. there is also the fear of not having that support in years to come as we will not be here forever and do not have resources to protect him for the rest of his life.
It’s a difficult course for neuro typical people to get through life. I think in many ways even more complicated than 20 years ago. Certainly so in this area. But now it’s gotten so certain behavior can get you thrown in jail, shot, and even killed. I am afraid, and feel with good reason.
Hello, your opinion concerning ABA is enlightening— I hear you. Tempering is essential… And possibly empowering people in the spectrum to have more agency as teachers/ therapists/role models? As a person in the spectrum whom also identifies as queer and *trans, the safety issue of passing as well as the issue of autistics having more influence and power in our own communities and in the public health sector; is very much paralleled with the *trans experience… And probably with the black/African American experience, the undocumented experience, etc….
The power disparity is crushing. Neurotypical people, just like men, just like whites; must acknowledge their privilege and stop speaking for us.
This article is a seriously empowering thing to read – wish people can see this!!!!!! Go you!!!!!!!
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Hello, I am on the spectrum, a former foster youth, and a professional para at a local high school. I work with other teachers and paras that often do not take the time (or have the time) to research articles like these— and educate themselves by stepping back and listening to autistic individuals…and it can be so overwhelmingly depressing and discouraging. Everyday I see adults (neuro-typical) exercising their power over young adults (Nero-diverse) to sort of force our students to act less autistic… To be less like themselves. And the constant question of independence refers it’s head…it’s difficult to open ones eyes to a system of oppression when they have rarely or never felt the clutches of oppression (ableism) and I am beginning to feel the fatigue of compassionate work do to this screwed of system that is in desperate need of transformation. Sometimes I really have to pick my battles because it’s impossible to control the ableism around me, but I speak out at times when I think it’s effective or needed or an educational moment… Because I don’t want to leave this work that I am a part of. By my goodness, we need neurotypical people to shut the hell up and listen.
I can relate to your statements. I also worked as a Behavior assistant and then as a para pro at a charter school. I am getting my own evaluation soon and I had no idea I was autistic at the time. I was good with the kids. I loved what I did. But I did get in fights and was even fired. I was seeing these kids mis treated and then being punished for it. I faught hard for behavior plans and even wrote them myself and forced the other teachers to at least have a copy of it. I was even laid off more than once and written up for trying to stand up for the safety and dignity of children in my care.
[…] Awesomely Autistic, Awesomely Distinguishable -by Amy Sequenzia https://awnnetwork.org/awesomely-autistic-awesomely-distinguishable/ […]
I am a autistic teenage girl.This is really inspiring. I’ve never had ABA but my aunt is always trying to make me act more neuro-typical and less autistic.However trying to do so is exhausting and I’m tired of it. I’m not even allowed in my house to talk about anything more then once because I “might get obsessed” nor am I allowed to stim outside my room “for fear of looking weird.” I love this and I thank you for inspiring me.You know until today I’ve never heard of ABA but then again I’ve only recently been researching autism and trying to learn more about the community without my aunts knowledge.