The diagnostic criteria for diagnosing Autism in Autistic People is primarily based on weaknesses and deficits, talking about (ONLY) the ways that Autistic People can struggle in society or what we look like in distress.
These limited criteria fail to describe what it looks like if Autistic People are doing well, have all of their needs accommodated, and have enough support in their lives? This leads me to ask the question:
What Does an Autistic Person Who is NOT Struggling Look Like? Would we even recognize their Autism?
Based on THIS (https://neurodivergentrebel.substack.com/p/what-does-an-autistic-person-who) Substack post from January 2024.
Transcript:
Lyric Rivera: What does an Autistic Person who’s not struggling look like? Would we even recognize their Autism?
Intro Music.Lyric Rivera: The criteria for diagnosing Autistic People is widely based on weaknesses and deficits, talking about only the ways that Autistic People struggle in society. These limited criteria fail to describe what it looks like if Autistic People are doing well, have all of our needs accommodated, and have enough support in our lives.
According to the CDC and the DSM-V, to meet the diagnostic criteria for Autism, “a child must have persistent deficits in each of the three areas of social, communication, and interaction, plus at least two of the four types of restricted repetitive behaviors.
“I’m going to choose to move past the part where the CDC uses the word “child”, ignoring the fact that Autistic People can also be adults, and that many of us won’t be diagnosed in childhood if we are diagnosed at all… mostly because I have so many thoughts on that issue it could be a completely different video on its own.
Let me know if you would like for me to expand on the way Autistic adults are basically ignored.Let’s get back to the lists one must have in order to get an Autism diagnosis:”Deficits in social and emotional reciprocity, deficits in nonverbal communication behaviors, used for social interaction, deficits in developing, maintaining, and understanding social relationships, as well as at least two of the following: stereotyped or repetitive motor movements (the use of objects or speech), insistance on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior, highly restricted fixated interests, that are abnormal in intensity or focus, and or hyper or hypo sensitivity to sensory input, or an unusual interest in sensory aspects of the environment”- air quotes because that’s not my language. That is the medical language that describes Autistic People in the DSM-V.
While the first three items are required for every Autistic Person. The last four items won’t apply to every Autistic Person, because a minimum of only two (out of the four) of the ” behavioral items” are required to qualify as Autistic, medically.
I, personally, check all of the boxes, but some Autistic People may only check as few as two of these items.
Another qualifier listed when diagnosing Autism is that “symptoms must cause clinically significant impairment in social, occupational, or other important areas of current functioning.” Meaning Autism can only be diagnosed if a person is struggling and feels as if being Autistic is causing significant troubles in their work school, social life, or other areas of “current functioning.”
At least they seem to understand that functioning fluctuates.It says current functioning. However, there are still many significant limitations in the way they have described Autistic People, only by our struggles, trauma, pain, and distress. What if an Autistic Person isn’t struggling? What if an Autistic Person is thriving?
Then according to the medical definition, would they qualify as Autistic?
Could an Autistic Person who has been medically diagnosed, lose their diagnosis, if they gain enough support to thrive in life? And will they get it back if they find themselves struggling enough in the future?
Who decides how much struggle is enough struggle for an Autistic Person to qualify as Autistic? Non-Autistic psychologists?
When I was diagnosed Autistic at the age of 29, I was in a time of crisis. I was struggling in survival mode.
Most of my adult life, since leaving school at 18, I’d done reasonably well, by leaning into my strengths, and avoiding as many of my weaknesses as I could. Because I had enough support for life’s demands, and by not forcing myself into environments and situations that I was poorly suited for, I created a life that worked well for me.
It wasn’t until I decided to push myself into a career, and a workplace that would require me to overcome and face my weaknesses (with little to no support and constant scoldings whenever I struggled or made mistakes) that I fell apart mentally and physically.Corporate America broke me.
My new career choice has started as an assistant / HR role, office work for a company that liked to party and socialize with each other regularly.
At most workplaces, socialization and fun are optional. However, my new boss had a way of guilt tripping people into functions after work (unpaid) and convincing people, they had chosen to participate on their own, and that the opportunities were “privileges” we should be happy to attend. Our team was “like a family” and we were all supposed to “be friends” and “develop close bonds.” And I was regularly scolded for not making enough efforts to bond with my team members, whom I struggled to relate to.
Nobody knew I was Autistic, but still my Autistic traits were coming up as “things I needed to overcome” on my performance reviews. I didn’t have “appropriate” posture or body language in front of clients, and I didn’t sit “properly” in the chair, which I’m not doing right now.
I was also afraid to speak in front of a group. Yes me- back then, I was afraid to speak in front of a group.My boss wanted me to take public speaking courses to help me get past my social anxiety, a medical diagnosis I received, when I was diagnosed Autistic.
Sometimes I had typos on emails, and in text messages, and work chats that I couldn’t see, thanks to how my brain processes and automatically corrects text.
I was told unless I progressed in correcting those items, I wouldn’t be able to move up within the company.
Be cause I didn’t know I was Autistic, I pushed myself to do, and be, all that was expected of me, throwing myself into efforts to extinguish any weakness my employer wanted me to get rid of, without much success. My efforts at assimilating into the neuro-typical workplace without support (and accepting blame for my inability to fit myself into systems that weren’t designed with my needs taken into consideration) broke me, sending me into a deep spiral of shame and doubt.
Everyone around me could do what was asked of them with very little effort, but here I was giving everything I had, only to be told repeatedly that I needed to try harder, or do better than my best.When I couldn’t reach the unfair out of reach bar that had been set for me (because I didn’t understand why I was struggling more than others to do certain things), I, a recovering perfectionist who tied my entire sense of identity to my job, took it as a personal failure of my inherent worth as a human being.
I could not see the systemic issues and stigma preventing my success back then, so I took all of the fault and blame for every shortcoming and failure, without compassion or understanding for the unmet needs and systemic issues I was struggling against.
When I didn’t know myself and my needs, I didn’t understand how to care for myself. Not knowing the truth about my brain prevented me from getting support, because I didn’t know what to ask for.I also felt ashamed when asking for help with things other people weren’t needing help with, because I’ve been mocked and scolded for asking for help with “easy things,” air quotes. In the past.
Because I’d been disconnected from the reality of my brain for most of my life, it left me not knowing myself. So I struggled a lot more, especially whenever I was forced to face my dreaded weaknesses.
My Autism diagnosis came at a point in my life when I was at a physical and mental health crisis.At that time, it was apparent, as it had been in school, that I was struggling.
I was experiencing “clinically significant impairment in social occupational or other important areas of my current functioning,” as it says in the medical language.
Over the past seven years, since learning about my NeuroDivergent brain, I have been learning how to honor my NeuroDivergent self authentically. In a lot of ways, I’ve removed myself from society, embracing my dreams to become, mostly a hermit, limiting how often I visit stores, and rarely socializing with people outside of my partner and my really, really, tiny friend circle (of NeuroDivergent friends who are also mostly long distance).
While every Autistic Person is different, I don’t crave engagements with other people. I find people, I don’t know, especially neuro-normative people, to be overwhelming, confusing and draining. And this is something I used to be ashamed of.
Some people get hangovers from drinking alcohol. I get hangovers from spending time with people- even people I know and I’m comfortable around.
Now that I know I’m Autistic, I have embraced the fact that I am thrilled to be left alone with my keyboard, hobbies and art supplies for weeks, even months, with very little socialization. As I get back in touch with my true self, my life continues to steadily improve, and get better.
I know I will always be Autistic, because Autism is a lifelong neurodevelopmental difference. It’s still part of me is starting to wonder if being Autistic is always something that people struggle with, or if Autistic People’s challenges are always clinically significant (as is required by the DSM).I also think a lot about aging, as an Autistic Person, and I have a fear that, in aging, the amount of support I need may increase, and I don’t know if I will be able to acquire the amount of support I need, as I age.I also think about all of the Autistic People who similar to me, lean really heavily into their strengths and avoid their weaknesses, and how many of these Autistic People may never know they are Autistic. I think about this a lot.
For example, if I had stuck to all of the tasks that I was well suited for, and never pushed myself to assimilate into neuro-typical roles, and never pushed myself into a role that I was poorly suited for, would I have ever found out I was Autistic? Would I’ve ever met that criteria? Would I have ever been diagnosed? Would I learned the truth about my brain?
I have so many questions about what an Autistic Person, who’s not struggling, looks like and if such a thing can exist. I think it does. I just think our medical definitions are really limited and we might not know how to recognize that Autistic Person.
Let me know in the comments below what you think about this one. Can an Autistic Person who is not struggling exist and still be Autistic, or would they no longer be Autistic if they’re not struggling? I’d love to know your thoughts.
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– Lyric Lark Rivera | NeuroDivergent Rebel
