After my training in conducting assessments for neurodiversity, I had a lot more questions than answers. For context, I’m only talking about assessments in adults.
Why are doing assessments this way?
Are we actually serving the community with our current methods?
How can we be better?
And how can we provide a safer, more affirming experience?
What struck me in my studies was the staggeringly high un-aliving rate in adults who are “diagnosed” with autism. I use quotations here because the word ‘diagnosis’ in this context is problematic. It implies that something is wrong, when autism is a part of the neurodiversity landscape, not a condition. But I use it carefully because maybe that is part of the problem.
Some of my teachers said that they use neuro-affirming language during assessments, but when they provided the final report, it was riddled with non-affirming language. They rationalized it by saying that we have to play the game, that it helps people get the accommodations they need.
But I think we can do both.
We can be both neuro-affirming and help our patients get the support they need.
We have to be safer. This means trying to do things differently, so that people have more of a space to be heard and seen. Neurodiversity assessments are intimate. We talk about past trauma, childhood, deep things you may not have ever told anyone. What makes sense to me is calling this more of a conversation. A relationship. A collaboration. Not just a finite set of appointments for the assessment and then ‘BYE.’ The information I provide is perhaps a paradigm shift for you and/or the people in your world. It takes time and support.
Here are ways we can do better:
After the assessment period is over, provide checkups at regular intervals to answer any questions, help patients work through any feelings, provide a space for the person to be seen and witnessed.
Provide more useful tools. I don’t think that very long reports are relevant for most. (Perhaps it is for kids and those with high-support needs to work within systems). Certainly as a doctor, it’s difficult to find the time to quickly extract relevant information. Let’s be more intentional with what information we share and how we share it.
Ask and don’t assume. Ask your patients what feels right for them. Do they want specific labels? Great. Do they only want terminology that’s relevant for self-understanding? Also great. It’s important to be adaptable.
This is a learning process for most of us. I’d love to hear your thoughts—what’s worked for you in the past? What do you wish could have been better? What are your ideas?