Knowing Why: Adult-Diagnosed Autistic People on Life and Autism

Knowing Why: Adult-Diagnosed Autistic People on Life and Autism (2018) Autistic Self Advocacy Network

This is an anthology of essays from a diverse group of adult-diagnosed autistic people.

Introduction by Elizabeth Bartmess
Emerging From Burnout by Erin Human
Being the Dictionary: On Passions, Diagnosis, and Integration by A.J. Odasso
Sensory Issues and Social Inclusion by Stuart Neilson
Working While Autistic by Kelly Bron Johnson
All of Me: How Do I Know Where Blackness Ends and Neurodivergence Begins? by Morénike Giwa Onaiwu
Using Intersecting Identities and Radically Accepting Communities to Increase Coping Skills by Samantha Hack
Autistic Navigation of Chronic Illness, Mental Illness, and Healthcare by Amythest Schaber
The Spectrum and Depression: Four Stories by M. Kelter
Cyborgs, Luddites, and To-Do List Apps: An Autistic Use of Technology by A.C. Buchanan

This is not an about-your-diagnosis book, but instead a set of essays on personal experience.

As such, it is incredibly reaffirming. I highlighted to very many passages. Ones where I went, “oh, so that’s why…” or “I thought it was only me being weird…”

The stories both reaffirm that I’m not the only one to deal with these things, as well as explanations for why I react the way I do in some situations.

For me, the bits that hit the hardest were on burnout.

Often, by the time we learn we are autistic, our needs have gone unmet for so long we are in burnout or crisis.

(B)urnout— a period when, after many years of struggling to cope, the demands of everyday life become increasingly difficult or impossible.

That is precisely how–at the age of 51–I got my neurodiversity diagnoses. I was simply no longer able to function. I’d gone through similar periods in the past, but the pandemic exacerbated everything.

None of the coping mechanisms I’d used in the past were working, and things other people used to relax and unwind create anxiety for me.

One person who was trying to help me asked when was the last time I spent time in a hair salon: well, I started cutting my own hair over a decade ago when I couldn’t afford a pro cut, and I’ve never stopped, because making small talk with a hairdresser is one of the most exhausting things I can imagine.

There is a retail phenomenon called (in a tragic irony) the Gruen Effect in which sensory disorientation and sensory confusion can be deliberately engineered in a shopping mall to create uncertainty and anxiety in shoppers. The response of most people is to resolve their anxiety by transferring all their uncertainties into shopping, with an easy resolution (literally) staring them in the face.

…

For people who don’t receive a sense of certainty and fulfilment from impulse shopping, the modern shopping mall is an experience of extreme discomfort that only obstructs carefully planned purchases.

Another essay described how I get overwhelmed so clearly it was a revelation.

When I have too much on my plate, my brain goes into overdrive and executive function (I call it executive dysfunction) issues start to rear their ugly head. I become overwhelmed by everything I have to do, and then freeze and can get nothing done at all. I no longer know where to start or even how to start. I then become angry at myself and fear letting everyone down.

I highlighted so many passages while reading this book–things that resonated deeply for me. Now that I am further along in learning about my new diagnoses and how I react to certain situations, it is probably time for a reread, to see what I pick up this time through.

Publisher: The Autistic Pres

Rating: 9/10

• Browse the archives:
  
• We’re Not Broken: Changing the Autism Conversation » »
• « « Uniquely Human: A Different Way of Seeing Autism