Autistic writer, YouTuber, and ABA survivor Faye Farhrenheit shares her story with the Therapist Neurodiversity Collective’s Amy Grant, M.S, CCC-SLP
*Warning: 18+ adult content, ABA, ableism, trauma, restraints, abuse, grooming
It is with the deepest gratitude to Faye Farhrenheit that we share her story with you all today. The labor she spent answering such charged questions in an effort to educate therapists and families is immeasurable. Faye, you are a remarkable person and we, as a Collective, are thankful that you sacrificed both time and emotional energy to educate us. We wish you continued healing, happiness, and success.
How old were you when you had ABA?
First time I was 8-14, I believe. I was diagnosed around 8. Then the next time I went to ABA, I was 15-16. The first program I attended was in Arizona, and the second program was in Colorado.
What led you to being enrolled in ABA?
It was offered to my mom by Medicaid in Arizona, as the only option, for a few years. I saw the same lady and attended therapy with other children and I hated it. During that time I was put into segregated classes and the teachers used the ABA principles in school.
Then, at age 15 I attended another segregated school program for “special needs” teens in Colorado. I remember getting up before sunrise every morning to get on “The Short Bus” for an hour plus long ride to a school far away that had “a better autism program” according to my mom.
The bus came to my house, which was nice. I remember getting on the bus for the first time and the next stop was another Autistic girl’s house. I watched her climb on and sit down, and then the bus driver got up and tied her to the bus seat with a restraint jacket and ties. She was clipped into the seat, unable to get up. Every morning she’d be put in her restraint jacket for school, and the bus driver would take it off when she was dropped off at home. The bus even dropped us off in a different area of the school, specifically in the back, and told us that it “would prevent bullying” that could be caused by “the normal children” seeing us get off the “short bus”.
I had a few classes with “the normal kids” but most of my time was spent in a program that totally isolated developmentally, physically, and intellectually disabled kids away from the rest of the student population. Our classes were in the lower levels of the school, and some were even in the basement. I ate in the “special needs” classrooms with the other disabled kids, rather than in the normal cafeteria, most of the time. Much of the time, because the other kids knew I was in the “autism program”, I avoided the main public restrooms, and instead went in the disability accessible bathroom in one of the autism classrooms. We were totally cut off from the “normal kids” and it was deeply isolating.
How long did you receive ABA and how long were your sessions?
On and off, for a low number of hours per week compared to recommended 40 hours per week, for 7-8 years. Most of this therapy was provided by school system, much of it was in the segregated classroom, and the rest was state Medicaid paying for private sessions with an ABA therapist, who I saw for at least 3-4 years, twice a month.
When I was in the special school system in Colorado, 3 times a week, for 2-3 hours each time. My one-on-one appointments with a therapist lasted usually between 1-2 hours.
Will you tell us about your experience with ABA?
“They used food deprivation in my program and they made us pair up and do it to each other. I feel incredible guilt over this.
Every morning I’d cut up a peanut butter and jelly sandwich into as many pieces as possible. Each piece was like a little bigger than an M&M.
Then I’d be told to force this non-verbal Autistic boy to do behaviors for each piece of the sandwich. He’d cry, hit his head in frustration, and say “hungry” which was one of like four words he could use.
I have no words to describe how bad I feel about being forced to do this as a child. If he didn’t “behave” he’d get no food and he’d go hungry.
He and the rest of us were expected to perform like trained circus animals for basic rights, like the ability to go to the bathroom.”
Do you feel like ABA positively impacted your life?
I feel like ABA “therapy” is conversion therapy for autistic people. Pretending you are “normal” isn’t real therapy, and pulling yourself up by your bootstraps is NOT advisable for permanent developmental disabilities. No amount of pretending will ever make me not autistic. Would we ever ask someone with Tourette’s to just try real hard and stop? I think that ABA needs to be put in the trash bin of retired scientific ideas, alongside the lobotomy, “curing” gayness, and the vivisection of alive and fully conscious animals. I think ABA therapy is outdated, unscientific, and has no place in modern medicine. So, has ABA positively impacted my life? No. It has, however, made me develop passionate opinions about ABA!
Do you feel like ABA negatively impacted your life?
I have trauma about being forced to try and be normal. I wanted to answer these interview questions a few months ago but I’m pretty sure I have PTSD and I decided to seek care first. I struggle with knowing that other people are accepting of me because of the extreme micromanaging in ABA.
When you tell a child they don’t even play with toys correctly it damages their sense of person. When you grow up learning that everything you do and everything you are is wrong and that you have to be a fake person in order to be accepted it devastates you.
They think they are teaching us appropriate social skills but it’s no different than training a child who is naturally feminine to act more masculine because you think that’s how boys should behave. It’s cruel and unaccepting.
Now I have a YouTube channel that talks about disability rights, among other things. Faye Fahrenheit is my YouTube channel and Twitter handle, and I’m happy to use my platform on YouTube and Twitter to educate people so they don’t get tricked into thinking ABA is necessary or healthy, like so many other parents were.
Many parents tell me that their child “loves” going and “loves” their “therapist.”When you went to ABA did you ever appear to “like” going or enjoy being there?
I’m sure on the surface it seemed like I enjoyed it, at times. I enjoyed receiving rewards, like candy and toys, and the therapists and teachers were often very nice to me. Unfortunately, children can often go along with things they don’t fully understand or aren’t comfortable with, just because the adults said so. In my case, I felt like everyone resented my autism and I was being sent to normal people training classes, which was humiliating and embarrassing.
It made me feel like there was something fundamentally wrong with me, and those are all reasons I tried hard in ABA therapy to impress my mom and my therapists, and my teachers. I wanted to “be normal” for a really long time as a child, and ABA is responsible for those feelings.
I feel like trying to do well in ABA by suppressing my autism is not that different than a gay man pretending to be straight. When people say their kids enjoyed ABA, I can’t help but think of a gay man, deep in the closet, married to a woman, with two beautiful children. On the outside I’m sure his relationship and his family seem perfect, he probably looks very happy, but looks deceive all the time. Nobody can ever truly be happy if they are suppressing a fundamental aspect of who they are.
What would you say to BCBAs and RBTs that argue there is a “good” ABA and a “bad” ABA?
I’d say that they are misinformed. They may have good intentions, but you know what they say about good intentions and the road to hell being paved by them.
Lots of the worst things ever done in human history were in the name of Good intentions and psychiatry psychology and disability care are all relatively in their infancy as fields of study.
Have you ever had other types of therapies?
Yes, as an adult, I went the talk therapy several times, for a couple years. I did this to work through the traumatic events of my childhood, including my time in segregated school programs, and in ABA. Ironic when you have to get therapy in order to move past your bad memories of therapy!
I’m in therapy again now actually, and I think I need to go for a long time because these traumas keep resurfacing.
Will you explain the differences (or similarities) of ABA and the “other” therapies you have been exposed to?
The therapy that I was involved in as an adult didn’t involve rewards and punishments, food, or a lack of consent. I actually wanted to be there.
If you could have a conversation with the ABA technicians that “treated” you, what would you say to them?
I would talk to them about the nature of evil. I think that people aren’t black and white, or good and evil. People are malleable and grey. People can be convinced to do the worst things if they believe that it’s “for the best”.
Have you seen the show, ‘The Handmaid’s Tale’? In this show, an authoritarian figure, Aunt Lydia, is unspeakably cruel to the girl’s she’s responsible for “training” for their new forced roles within the dictatorship. Aunt Lydia can be vicious, but she also shows genuine tenderness at times for her captured subjects, hugging them, crying for them, praying for them, even breaking the rules at times for them, truly believing that her harshness is helping save them from themselves. Aunt Lydia is a great villain because she’s just like you or I, she’s an ordinary person convinced, warped, twisted by ideology into believing that doing terrible things to other people is for the greater good. Before Aunt Lydia was an officer in this dictatorship, she was an elderly woman who was a school teacher. A school teacher isn’t what we think of when we think “evil”. I think evil isn’t always what we are, but rather, what we do, what we can be convinced to do or to look away from.
I think that every single one of us has the potential to hurt others without intending to. I don’t think that makes you a fundamentally bad or evil person, however, I do think that what this means for anyone hoping to help is to study your history.
There have been countless times throughout the history of medicine, and especially psychiatry/psychology, where torture, disfigurement, or permanent emotional/ psychological damage have all been unintended consequences of hurting people while trying to help them, or even save their lives. As far as I’m concerned, ABA is an outdated and debunked idea, that belongs on the shelf next to “hug therapy” and “refrigerator mom theory” for autism.
There is only one way to prevent history from repeating itself, and that is to wholly and completely endorse the civil rights and self-agency of all people with brain-based disorders and disabilities. So, what would talking with them about scientific evil accomplish? I certainly don’t want them to think that I believe they’re evil, but I do believe that what they did was wrong and fundamentally misguided, no matter how well-intentioned. The only way to make it right is to apologize, speak out against ABA, and speak out in favor of #BetterWaysThanABA.
If you could have a conversation with a parent of a newly diagnosed Autistic child what would you say to them?
Please reach out to the #ActuallyAutustic community online. We are here to help and support you. We know that you want the best for your children and we know that doctors fear monger a lot about autism. There’s no need for fear-mongering. But we are here to comfort and support you. We just want you to not make the mistakes our own parents made. We know better now, and when we know better we can do better.
This interview was published in its entirety.
Amy Grant, M.S., CCC-SLP
Owner and Director Therapy Center of Buda; ASHA Certified Speech-Language Pathologist since 2005
After gaining experience in early childhood intervention and outpatient pediatric care, Amy opened the Therapy Center of Buda in 2009, which serves the neurodivergent pediatric population through an interdisciplinary team of speech-language pathologists and occupational therapists. Amy serves as the Clinic Director and lead SLP, and supervises assistants and administrative staff. She practices family-centered, child-led therapy that embraces the neurodiversity paradigm, with a foundational dedication to serving her clients and families with compassion and respect as well as advocating for human rights for all. Amy received extensive training on administering the Autism Diagnostic Observation Schedule (ADOS-2) and provides assistance to pediatricians and neurologists in identifying Autism from the unique perspective of an SLP who embraces neurodiversity. She has a particular interest in empowering others to self-advocate and providing access to alternative forms of communication without prerequisites. Core aspects of her practice include: providing counsel, access, and support for families to apply for social services and grants; helping caregivers to maneuver the school system and empowering them to be strong advocates for their child and/or themselves, and providing education to families about diagnoses, the neurodiversity paradigm, and evidence-based therapies.
Therapy Center of Buda
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- Q&A with Faye Farhrenheit - September 13, 2020
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- ABA is NOT Effective: So says the Latest Report from the Department of Defense - September 8, 2020