The complicated question of diagnosis and disclosure
Within my home, there has been frequent debate about whether or not the whole concept of autism – and diagnosis of any kind, whether it be autism, depression, anxiety, or whatever – is relevant or helpful.
My wife, who is a psychotherapist herself with 20 years of experience and has an autistic brother, was the one who first started calling attention to the possibility that I might be autistic. At the time, I dismissed the idea. I’d been working with autistic children and their families for years and thought I knew what autism looks like. (I did – in children who are heavily impacted, non-verbal or only marginally verbal, mostly boys and mostly under 10 years old.) I was not yet educated on the full range of neurodivergence, like most therapists – indeed, like most people, including all too many professionals who specialize in autism. I wrote off my autistic features as the legacy of complex trauma and chronic toxic stress.
It was only when I went into private practice and started working with a broader range of autistic adults that I started taking the idea more seriously. Especially when my clients started calling me out (gently, and with great kindness and humor) on my “tisms.”
Eventually, as my practice became increasingly focused on neurodivergence-affirming therapy, it started to feel increasingly inauthentic to answer the most common question potential clients would ask – “Are you autistic yourself?” – by saying “I don’t know, my wife thinks so.” How could I truly support people who were newly diagnosed, on the path of discovery, or wrestling with the complex questions around autistic identity when I had avoided walking this path myself?
So I sought out a very good psychologist (Benjamin Neely) who specializes in adult autism evaluations. To my shock and at the same time no surprise at all, after reviewing my testing results it only took him 45 minutes of clarifying questions to confidently state, “Yep, you’re autistic.”
My world shifted, in a subtle way. Many misplaced puzzle pieces about my life suddenly slid into place. A wave of self-compassion washed over me. And grief. And rage – why had it taken so long for anyone to explain this to me? Why had I had to suffer this long, not knowing something so vital about myself? And forgiveness – how could anyone have known? And my inner justice warrior rose up – there are so many people like me, and so little information out there, and so much misunderstanding, and so much stigma, and so few resources to help.
These tectonic shifts in my self-concept and worldview continue, a year later, like aftershocks after the earthquake. Going deeper and deeper, in increasingly subtle ways. The land had steadied, but the reshaping of the landscape of self-concept (inner and outer) continues.
More importantly, my approach to my work as a therapist and so-called “autism specialist” also shifted in subtle but important ways. I say so-called because although I had taken the trainings and done a lot of good work supporting autistic people and their families and loved ones, in retrospect I had only scratched the surface. I certainly knew more than the average therapist who had not been trained in autism and could be more helpful. But I had not fully absorbed the information I had, and I could not fully walk in the shoes of the people I was helping.
It reminds me of what my ex-wife, an OB/Gyn, said about her approach to her work before and after having children. Prior to becoming a mother, she was a competent and highly skilled doctor who was good at the technical aspects of helping pregnant women deliver a healthy baby. After going through childbirth herself, she had a far deeper mind-body-spirit understanding of what her patients were going through. It made her work much more authentic, and much more compassionate.
I found the same, after my autism diagnosis. I wasn’t just a specialist with technical knowledge and a toolkit of possible coping skills and strategies to share. I became a fellow-traveler, searching for answers to complex questions, working with my clients (brothers and sisters) to map out largely unexplored territory together.
My quest for information and training became not academic, but personal. Typically, I went on a wide range of autistic deep dives on a wide range of subjects about neurodivergence and how to live a healthy and happy life with a complicated, delicately balanced nervous system in a world that is all too harsh, loud, demanding, and unwelcoming.
And I started trying to apply for myself some of the tools and techniques I’d been recommending to clients for years. With predictably mixed results.
Along the way, I started receiving a lot of the messages that so many so-called “high functioning” or “low support needs” or “Aspie” autistics receive.
“Don’t define yourself by your diagnosis.”
“Don’t use your autism as an excuse.”
“Why do you talk about autism so much?”
“Stop being so obsessed.”
“You don’t look autistic.”
Combined with the usual judgments and criticisms of my more autistic and PDA behaviors, and the usual lack of acknowledgment about what triggers and escalates these things and the difficulties in finding accommodations for my needs (even within my own home), this has made life very confusing at times.
How much does my autism – and, I now increasingly recognize, my internalized PDA – really define who I am?
How much do I want to define my life experience through this one particular lens?
Out of the myriad aspects of neurodivergent experience and identity, which ones fit me, and which don’t?
How much do I share about this experience, and with whom, and with what purpose?
How much masking should I continue to do, and in what settings? Where is it safe to unmask and let my inner freak flag fly?
And – this is probably unique to autistic therapists and other healthcare professionals – how much self-disclosure in my therapy sessions is healthy for my clients, and to what degree does it start to edge into a boundary violation or other ethical issues?
I continue to navigate these issues, sometimes in consultation with other professionals, both autistic and neurotypical. There are no easy or universal answers.
I do believe that it is important – no, vital – that I self-identify as an autistic therapist. Not just because that’s my authentic identity, and I wear the label with pride. But also because it might give courage and cover for other autistics of all types and in all professions to self-disclose (if they choose) with less shame and stigma. The more of us there are out there in public, showing the world just how diverse the neurodivergent community is and just how limited (and limiting) their stereotypes of us are, the better.
Increasingly, I’m expanding my work beyond 1-on-1 therapy to include more advocacy, education, training, consultation, public speaking, and publication. I’m scheduled to appear on two podcasts in the next couple weeks. I’m starting to offer consultations on neurodivergence-affirming care to other therapists who are not autism specialists, as well as medical professionals, employers, educators, and others.
And most importantly, I’m starting to use my own voice with greater courage and openness. Opening up my 5thChakra, if you will.
I encourage you to do the same. Please feel free to share your own experiences in the comment section. As the life coach Lisa Nichols says (paraphrasing), “Let your own light shine bright. If anyone doesn’t like it, give them shades.”
