A little bit about me, before I talk to you
An open letter to any doctor or medical professional to facilitate the communication process between you and your Autistic patient. Below you'll find my email if you wish to reach out to me.
Practicing since: 2011
Licensed Master of Social Work #6801093232
You're receiving this open letter because your patient identifies as Autistic. They are hoping that you'll read this to be better able to provide them care. As a fellow healthcare worker in mental health I know that in recent years the demands on us have increased so I appreciate you taking the time to read this today. My intent is to guide you toward appropriate resources and explain some basic information.
Depending on when you went to medical school and your specialty you may not have learned much about Autism Spectrum Disorder. In 2013, the former diagnosis of Aspergers was subsumed under the category of Autism Spectrum Disorder. This Very Well article describes the changes in a sanitized way, discussing the changes to the DSM-5. This article in Scientific American talks about Hans Aspergers collaboration with the third reich, which was one reason to eliminate the name, the other was the reality that all those folks are on the same spectrum. If you went to school before this change or you never worked often with the psychological development of children, you might not know a lot about Autism. And that's okay, we can't expect doctors to know everything.
In the spirit of ongoing learning, something all healthcare professionals take on when we go into this field, let me mention that one of the key changes to the DSM-5 was the acknowledgement of masking, something particularly relevant for folks who are diagnosed with Autism later in life. I was diagnosed at age 34 and it was because I was incredibly good at masking. I even pursued a degree where I was formally trained on how often to talk vs. listen (listen 80%, talk 20% of the time) and given feedback on my eye contact and hand movements. Masking is what Autistic people do to hide how "weird" we are in an effort to gain friends and forestall social exclusion. We do it because we receive thousands of messages by the time that we're adults that something is wrong with us. Those messages are often the result of unconscious bias against us.
Given that many people who perform assessments graduated prior to 2013, even folks in the Autism Assessment field are not educated on masking or how Autism presents in adults. There also seems to be a pervasive idea that somehow Autism is a children's issue, when really it is how your brain/nervous system and body engage with all the world, which means it's both an integral part of your identity and lifelong. I cannot tell you how often I would search for resources for myself or clients only to see that the entire article was written toward a neurotypical parent with an Autistic child. During my assessment, which again took place at the age of 34, I was assessed using the ADOS which involves a children's book. I think it's easy to see how adults might view this type of assessment as condescending.
Autism does not need to be cured and I would encourage you to read more articles and books by Autistic people, or listen to podcasts to learn more about our lived experiences. Since assessments are expensive and this is indeed an important aspect of identity, many in the Autistic community are pro self-identification. If your patient doesn't have the money or desire to seek a formal assessment, I would proceed assuming that it's likely they're Autistic.
Most people are aware that folks who are Autistic have "communication difficulties." In a neurodiversity affirming paradigm this is often framed as Autistic communication. Selective mutism is common with Autistic people. This might mean your patient communicates in writing, like sending a message through the portal before / after appointments, or bringing you a typed up letter detailing symptom history. This is normal Autistic communication. It helps compensate for the fact that in a stressful environment with sensory overwhelm we may not recall all the things we wanted to, so we write them down. Autistic people are often deeply curious and if we've struggled with a health issue for a long time we will likely research this. If you're concerned about the sources your patient is reading, direct them to better information. Ask them the way they learn best and then find good sources of information for them in that medium, be it articles, books, YouTube vidoes or podcasts. You might notice that my resource pages usually have all of these types of resources and that's because people learn in different ways. It's my attempt to accommodate anyone who would use my website.
It would be useful for you to know that Autism is not just something that affects how someone socializes, but also a neuromotor condition. Autistic people often lose coordination when overwhelmed or struggle to make sense of sensory stimuli. Autism can affect anesthesia and other medications. We are prone to several co-morbidities including but not limited to: Post Traumatic Stress Disorder which is experienced differently by Autistic people, migraines, epilepsy, allergic disorders, gastrointestinal issues, and Ehler-Danlos syndrome. We are completely autistic it's part of who we are.
If you're new to Autism, I hope this letter helps you pursue other resources for learning. If you were aware of Autism prior to this, I hope you learned something new or were exposed to an additional resource. I'm always open to feedback about my website and collaboration with colleagues. If you know of a resource that helped you with your patients please feel free to send it to me. If you want to learn more you can book a consultation with me.
Resources + Citations
True Node resource pages
I have curated quite a few resources on my Autism+ADHD Page. There's a separate page for Autistic Catatonia because it is different in presentation from catatonia tied to depression for example. And I have a separate section collaboratively built with other Autistic peple regarding our sensory needs. This is an education tool aimed at you, the sensory page is aimed at your clients who might be struggling to meet their sensory needs.
Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments. DOI: 10.1038/srep40700
Possibility Models is a term I heard from Lavern Cox to refer to the idea that if you can see it, you can be it. Here are some Autistic people who share their experiences:
Neuroqeer essays and blog posts by Nick Walker
Yo Samdy Sam's YouTube Channel
Autistic Hoya by Lydia X. Z. Brown
Women and Autism: Toward a Better Understanding TEDTalk by Sarai Pahla
Oh, That's Just My Autism! podcast by Melissa Tacia
Mind Your Autistic Brain Talk Show by Carole Jean Whittington