Lisa L Wasikowski is an ASD self-advocate who lives in the Seattle area with her husband and daughter. We are grateful for her generosity in sharing her personal journey, insight, and reflections with Autism Blog readers.
Someone asked me to describe my ASD “coming out story”. Well, this is effectively it. I’ve told a handful of people, and currently wonder how to deal with regrets. When you’re the kind of person who lives as an open book, something like this won’t stay secret for very long, and since some people know, and people like to discuss, I’m sure it’s leaked beyond my pool. Now, it’s in the public eye of discernment. Take it for what it’s worth to you, and kindly move on.
It’s not news to me. I knew back in 2001, when my boss (at the time) gifted me with the Temple Grandin book, Thinking In Pictures. Felt like Dr. Grandin spoke about me in that book; so many parallels. Those parallels followed me like a shadowy stalker, waiting for me to finally turn around and pay attention.
I’m a details person. I see specific components of the bigger picture most others don’t. I see pathways around the hurdles. I see avenues and otherwise inaccessible trails when others just see the mountain. I find the valleys and build bridges. Sometimes I am the bridge. Sometimes the bridge is invisible to all else. Sometimes the image is a blueprint, divine architecture, so I take the cue. Sometimes people block the road simply because they can. No hope lost, just means there’s work to do.
After reading Dr. Grandin’s book again, scholarly articles about Asperger’s, and listening to podcasts about Asperger’s, and re-studying my favorite characters with Aspberger’s on tv and in movies, and listening to my husband’s questions again about my personality quirks or odd behavioral traits I didn’t really have answers for, I drew up a list. The final straw before creating the list was a podcast telling me if I met at least six of the eight possible symptoms, I might want to seek professional help.
MY list:
- Very detail oriented
- Fast input ability, except when in social situations.
- Very longwinded.
- Socially awkward.
- I prefer my own company to the company of others.
- Little to no filter.
- Obsessive thoughts.
- Impenetrable drive.
- Missed social cues.
- Emotional breakdowns.
- Proper / predictable places for things.
- Reliance upon schedule.
- Trouble with eye contact.
- Hypersensitivity to certain sounds / disturbances in routine / personal patterns.
- Very perfectionistic.
- Can be way too literal.
- Love to research to exhaustion and beyond.
- Hypersensitive empathy.
- Awkward facial expressions and physical stances.
- Allergic to chit-chat.
- Specific organizational habits.
- Lists, lists, lists, lists, lists.
- Persistent vocal monotone / lack of vocal range when speaking.
- Easy to be mistaken for angry or defensive.
- Sensitivity to touch, lights, and noise.
- Difficult to focus.
- Difficult to refocus when focus is broken.
- Prone to intense linear thinking.
I saw my doc and showed her the list, and she sent me to a provider who agreed with my best-guess and gave me a number to call to find a therapist. It’s not like the formal diagnosis was a shocker. I mean, it explains a lot, but it’s more a relief than anything else, and was by far the best gift I could’ve received for my 44th birthday, especially in the wake of such stressful events in my life.
My daughter has Intellectual / Developmental Disabilities (I/DD), and I am her primary caregiver. No matter what, I am her mom first, a fierce, mama-bear with a low tolerance for malarkey. I can be a pretty loud, demanding, pain in the tuches, but most of that is due to the system, and how unprepared it is for my daughter. My husband and I just discussed the likelihood of people we’ve worked with (therapists, teachers, doctors, aides) probably not remembering me fondly. Some of them are still in our lives. Others had the pleasure of knowing me in the throes of Postpartum Depression (PPD).
In this chapter of my life, Autism Spectrum Disorder (ASD) is a total blessing. It keeps me fueled. It keeps me inspired. It keeps me locked out of the box society wants so badly to stuff me into. I have a better relationship with myself, and find it way easier to take responsibility for my own shortcomings or unfavorable actions. My intent is never to harm. I wear it all on my sleeve, not because I care to share so much, because I know no other way, which can lead to a tumultuous comedy of errors. If only I got the joke.
I’ve always wondered why I’m so different. Now I know, and now you know. So what? How has the diagnosis changed things? Mostly, I feel like me. I’ve never felt at home in my own mind before, felt trapped, held hostage as if in someone else’s science experiment gone wrong. Plus, my husband has more answers to his questions and it’s allowed him to understand me more, act with more compassion, patience, and resolve. It’s a new road, full of crisp color and hairpin turns. Will “outing myself” help someone else? I sure hope so.
This is such an honest, transparent and heart warming testimony. My son has a diagnosis of ASD and I too have read Temple Grandin books, I am just about to begin Thinking in Pictures, I have just read The Autistic Brain (which was fascinating and explained many thoughts I have been thinking, ie brain scans v behavioural assessments). She like yourself is very inspiring. I also read a book last year called ‘Daring Greatly’ by Brene Brown. She has researched ‘shame’ and in her research over a few years with about 13,000 people, discovered those with the least shame in their lives and the greatest joy in their life, were those with the greatest transparency and openess. She refers to the term the ‘whole hearted’ in her research who were in one of the two groups – those who live courageously and as a result with the most joy and the least effected by any shame. She has a great Ted Talk ‘The power of vulnerability’ Thank you for sharing your journey, it will bring freedom and joy to many who read it.