Beyond the Autism Diagnosis
Crafting a Personal Autism Profile
Years ago, I imagined a form, a sheet of paper (or many sheets of paper) that someone could fill out.
The top of the form was data:
First name
Middle
Last name
Date of birth
Address
Phone number
E-mail address
Which is pretty standard for a lot of forms these days. Get contact info out of the way. Maybe there's proof of insurance or proof of identity, but otherwise, it's a basic form.
Then, and I believe this is important, we begin to deviate. The next question is a pair of checkboxes:
NT or ND1
This is an important distinction when filling out this form. Because, in my mind, what you choose dictates what follows. In a strictly paper world, it would be a series of 'if this, then fill out sections 8, 17, 42'.
In a digital world, checking the NT vs ND box changes the form entirely.
The form would include sections on Theory of Mind and Executive Functioning skills. It would delve into a history of possible abuse or bullying. The contents of the form would help inform how a therapist is chosen and the best doctor to have, as the presentation of symptoms in treatment and pain expression may be different.
Theory of mind is often considered the empathy aspect of our thinking. One misconception about autism is that people with autism lack emotions. While emotional expression may be limited, a lack of emotions is false. Rather, I propose the defining in Theory of Mind is one of processing time vs an ability to see the significance within an emotional situation or event and respond appropriately.
Executive functioning skills are those skills that allow you to plan ahead, have access to recent memories, before they become long-term, and to make realistic and achievable goals. When these areas are lacking, as with ADHD, then getting things done or accurately preparing for the near future becomes a problem. One that I try to fix by writing things down, putting what I need to remember in my phone, or asking the people around me to remind me if I forget.
Things like this become a tool to help determine next steps and best practices. What I understand as Normal Protocols in medicine take a new form when it comes to the whole body, whole mind approach to someone whose brain is literally wired differently.
One of my posts, recently, was on autism profiles and used PDA or pathological demand avoidance as one example of an autism profile, you can read that post here. But a profile is more than one thing. It's more than just autism and a specific flavor of autism. It should encapsulate the experiences and life of an individual in a way that helps positively inform best practices for their life, but doesn't go so far as to cause problems for the individual when seeking treatment, additional supports, or help.
The profile should list specific parts of the autism experience and how much support is needed for each one. What medicines have been tried, which medicines have been more effective, and which medicines have been less effective. The same would be true of therapy, interventions, medical visits, possible social interactions, and so on.
What is true in an autism diagnosis, and I’m guessing in medical and therapeutic notes, are the reflections of the professional, their observations, and in some cases guesses and assumptions about what’s happening and what needs to happen.
All of this is good (though some of it may be construed as bad, and rightfully so), but all of it, when combined together, helps to create a whole person view of autism (or not autism) that, when applied correctly, allows for better and more informed levels of support.
When I go see my doctor, he has in his notes that I have autism. If the conversation and visit begin to veer in a direction that indicates to me he isn’t keeping autism in mind as we go through the process, I bring it up as well as any relevant reading and material that might help to inform the outcome of my visit in a positive and progressive way.
The same is also true when I go to the emergency room, regardless of whether I am a patient or accompanying caregiver (not often, thankfully). My objective in these instances is to allow the medical professionals to know two things: I present differently than most of the people they are dealing with; and, I may not always respond appropriately or at all to what they are saying. I’m not asking for anything special. I don’t want to be there in the first place, and I understand the ER or even Urgent Care (staffed by the ER in our area) has a primary goal of getting people in and out, stabilized if possible, with a referral to their regular doctor and not necessarily to fix what’s broken.
Since things like this are meant to be symbiotic, hopefully, with the onus of care and medical decision making through a primary care provider, this relationship and associated limitations make sense to me.
So much so that when establishing relationships with Command's (and Camper's) pediatrician's office, it’s important to recognize and reaffirm that Commander is autistic and therefore needs different kinds of attention than Camper. Since I’m the stay-at-home parent who takes both boys to the doctor (and dentist), letting them know part of my autism profile is also necessary as I’m also the primary decision maker for the boys.
Knowing Commander’s general profile and then adjusting and adapting for it as he grows older (also the main reason I started following the PDA information path) allows me and others to adjust our expectations and help adjust medical or others' expectations toward what is most likely to work. Like me, Commander has an insanely high pain tolerance. Like me, he’s resistant to being comforted when hurt. There’s a whole list of these things that might make either Commander or me seem distant and detached, but when recognized, offer a more robust and clearer view of what’s happening.
All of which is good.
And all of which needs to be captured and shared, when appropriate. While my form idea may be a starting point, the other reality is that it also needs to be considered in terms of the right to privacy and the right to disclose or decide not to disclose to others.
Ideally, this wouldn’t be a problem as NT would also have a form and a profile, and their needs and scaffolds, the things they present, would also be part of the much bigger picture. When information about someone is shared, as in a classroom or academic setting, that information is there to inform the teacher, professor, or whoever is in charge of what changes need to exist for different participants and not as a mode of disclosure, but as an extension to the right to privacy.
Ultimately, I believe, by embracing a culture in which people, as in individuals, start to look for answers and begin creating personal profiles and then insisting on using those profiles in collectively beneficial ways, we will end up in a world and in cultures that will better embrace differences and more instinctively adapt to the different needs within a community for both individuals and the collective group.
This of course assumes a world in which people understand the differences between NT and ND and a diagnosis is possible and correct for everyone.