The following article details my stance as a provider on the neurodiversity vs. medical model of Autism (and could be applied to many other neurodevelopmental differences as well). As a spoiler, I tend towards favor of the neurodiversity model. Anecdotally, as a clinician, I've seen this mindset lead to better outcomes for my kids in terms of increased self-esteem, more social connection, and less depression and anxiety. That said, I'm not here to judge families or individuals who want to talk to me about their alignment with the medical model or engagement in services of that ilk. I likely won't agree with those perspectives or choices and may say so, but recognize that when people make meaningful change it is most often the result of dialogue not condemnation. Plus, growing up Catholic (and continuing to practice this faith), I've had enough condemnation to last a lifetime. This blog is a safe space for people trying to find their way.
Neurodiversity vs. Medical Model: My Understanding of the Conflict
I'd like to state again, that all opinions shared here are my own and do not necessarily reflect the opinions of my family, friends, employers, or employees. My favorite resource for understanding this conflict is an article by British Autism researcher, Simon Baron-Cohen linked here. (Fun fact, he is the cousin of comedian Sacha Baron Cohen, which is just so funny to me.) Dr. Baron-Cohen defines three key words to this discussion:
Disease: when a disorder can be ascribed to a specific causal mechanism
Disorder: when an individual shows symptoms that are causing dysfunction and where the cause is unknown
Disability: when an individual is below average on a standardized measure of functioning and when this causes suffering in a particular environment (see further explanation of the social model of disability below)
Difference: refers to variation in a trait, like having blue or brown eyes
Broadly speaking, the medical model views Autism as a disease and/or disorder and the Neurodiversity model views Autism as a disability and/or difference. Medical model oriented research focuses on preventing and curing Autism. Neurodiversity oriented research focuses on accommodations and supports for Autistic people, as well as Autistic joy, thriving, and well-being.
My stance as a provider: As I said above, I'm not militant about, it but I lean strongly towards the Neurodiversity model. I take a strengths based approach as a therapist and find that celebrating my patient's differences and focusing on their joy and thriving has had the best results in their care.
Person First vs. Identity First Language
The medical model uses something called "person fist language" in which someone's personhood is recognized before their disorder. From this perspective one would say "person with Autism." The Neurodiversity model utilizes identity first language in which one claims or refers to Autism as a central part of the person's identity. People using this language might say "he/she/they are Autistic" or "Autistic person." Something else important to acknowledge is that many folks feel that when using person first language Autistic should not be capitalized. My understanding is that this is because the capitalization designates it as a disease or disorder. From this perspective one would write "autistic person" or "they/she/he is autistic."
My stance as a provider: When I meet with a patient for the first time, I ask them which language they prefer. Most of my patients don't express a strong preference. If my patients don't express a strong preference I usually default to identity first language. I struggle wit whether or not to capitalize Autistic. In my mind I capitalize descriptors like Black, Asian, and White, and Autism seems to fall along the same spectrum of identity to me. But then again I don't capitalize things like male, female, and non-binary. So I'm opening to learning more about this and actively trying to!
The Social Model of Disability
The social model of disability is a way of understanding disability that connects disability as inherently related to the environment. It asserts that disability only really exists in certain contexts and it is these contexts that are disabling when interacting with a given persons attributes and abilities.
That's all a really long way to say that if we all used wheelchairs, not being able to walk wouldn't be a disability because there wouldn't be any stairs in the world. But the fact is we don't all use wheelchairs, so there are stairs in the world. Not being able to walk isn't inherently a disability, it's a disability only in a world where there are stairs.
My stance as a provider: I know there are folks on the more intense end of the neurodiversity spectrum who assert that Autism isn't a disability, only a difference. I don't feel this way because I ascribe to the social model of disability and we're so obviously living in a world that isn't set up to work well for Autistic people. Hence, currently, I see Autism as a disability. However, I think that with time and systems level change a world could be created where Autism is simply a difference.
Where to Go Based on What You Think
There is a lot of information on the internet, and as a provider I've seen parents and Autistic youth get confused about which information is in alignment with their beliefs. I've made a table below with resources organized by which model they align with. (For some, their alignment with this model is directly stated, for others it's just my observation of their alignment.) Whether you/your kid want to storm the ableist tower, or just get yourself/your kid through college in one piece, I'm hopeful this list will give you some helpful materials!
Medical Model | Somewhere In The Middle | Neurodiversity |
Autism Speaks | ||
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I'm always wanting to add to this list please contact me if you have other helpful national resources you think I should check out to include!
Finally, I bet a lot of you are wondering what the current thinking is on Applied Behavior Analysis (ABA) therapy. This topic is really intertwined with the topics here but there is so much to discuss both about the discussion around ABA as well as my own journey with ABA that that will be a separate blog post. Look for it coming soon! Probably titled- "I Was An ABA Provider- Am I Going To Hell?: And Other Thoughts"
Also, totally "unrelated", look for a post soon about how Catholicism has impacted my world views...
Until next time!
Ashley
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