“You were such a good baby!” My parents’ limited recollection of my developmental history.
I love my family. My parents have been loving and caring since day 1.
Would I include them in an autism evaluation? Absolutely not. (If you’re reading this, sorry guys — love you, but no.)
Not too long ago, I actually had the opportunity to include parent feedback in a questionnaire. It asked questions about my mom’s pregnancy, circumstances of my birth, my milestones, my special interests as a kid, my sensory profile, my social behaviors in my earliest years, etc. I sat down next to my mom on my couch and quickly realized this would be a long conversation that would lead to no where.
To sum it all up, her eyes brightened and said “You were such a good baby!” “You were quiet.” “You were shy.” “You never cried.” “You were so smart!” Cue comments about how cute I was.
My parents had me at age 22 and 23. They were young, working parents with no support. Their concern was getting the bills paid and providing for my needs, which they absolutely did. They loved me, did fun activities, bought me all the toys and games, watched Saturday morning cartoons with me, read books to me every night, took me back to school shopping every September and crossed every item off the list. I feel lucky and grateful for all the love. I realize how privileged I was in this way.
However:
Were they aware of developmental timelines? No. Were they aware of my sensory and social differences? Also no. A neurodiversity perspective was not even remotely on their radar at the time, and quite frankly, it still isn’t.
When I hear their feedback about my childhood, I see things through a much different lens. When I hear that I was such a quiet kid and barely cried, I wonder how much I internalized my distress. I wonder if I wasn’t able to communicate important signals about how I felt or what I needed. I wonder if my nervous system was constantly setting off alarm bells without anyone knowing.
I wonder why I needed long car rides in the car seat to fall asleep. (The movement was regulating for me). Feeling comforted by being snugly strapped in a car seat, I wonder if that proprioceptive input helped my little body feel calm.
I wonder why I couldn’t sleep away from my parents until a much later age that I don’t even care to admit online.
There’s so many vague and fuzzy memories of times where I would organize my toys in extremely specific ways.
I do know that around other kids, I’d be off in my own world and I much preferred it that way.
I also avoided gym classes like the plague — big, coordinated gross motor movements were difficult for my body and the social group aspect was unbearable.
I much preferred games with clearly defined rules and guidelines, and almost never engaged in abstract styles of play. I would much rather play a structured game of cards than pretend play with dolls.
I would gravitate towards the same clothing items.
I have fond memories of routines with my family, but I also know that if those routines weren’t completed, I would be dysregulated for hours.
I wonder why when all the kids in the neighborhood eagerly lined up to get ice cream from the ice cream truck, I needed my grandpa to buy it for me.
A lot of my traits were simply just written off as being shy. I wonder how many other autistic girls don’t get identified because they were labeled as “shy” or “anxious” and never get seen for who they are.
This is all just a fraction of the vast and confusing information that I’ve had to piece together retrospectively, and it is nowhere near complete. I understand that for many late-identified neurodivergent people, this can be an extremely complicated process. We can look back and realize more and more things that were different about us in childhood, but we always thought of it as the norm because no one told us differently. It’s even more complicated when we have to unpack this information on our own, or through therapy, with little to no feedback from family.
None of these “cute” qualities, as my mom would call them, were ever seen as atypical by my parents. I was their first and only child. They didn’t attend any parent groups or trainings. There was no Google. There weren’t really forums in the late 90’s where they could stumble upon information that could inform them about developmental differences and things to look out for. There wasn’t a widespread neurodiversity movement. They never thought “my child is different.” They thought “my child is amazing!” and left it at that. Both could be true, of course, I just wish they had a better grasp on early autism signs and characteristics that I exhibited back then so they could reflect on it in an objective, informed way, rather than just swooning or overshadowing key details when recalling those earliest memories.
This is why I appreciate diagnostic processes where family feedback is not a requirement. Providers that go in depth about OUR OWN lived experiences and care to understand things from our point of view, when that’s all we got. It is extremely important for individuals with circumstances like mine. It is also important for people whose families may not be living or are no longer in their lives. They may not be available, they may not be supportive, they may be abusive, or simply be uninformed. We definitely don’t want to put people in situations that can be re-traumatizing for them. I was recently talking to a non-binary client whose family is estranged. This person could not and did not want to include family input at all, and that is okay. Our experiences and self-testimonies as late identified autistics is crucial and valid information. We may have chosen family, spouses, friends, or others who can contribute to our process if we choose to include them.
It also must be said that there can absolutely also be a cultural piece to this. Different cultures have their own set of perspectives, knowledge, beliefs, techniques, expectations, interpretations, recommendations, and acceptance towards developmental and mental health conditions. I can tell you from my own experience that my elderly, traditional, South Asian grandfather pretty much denied that any of my mental health challenges were real and my treatment involvement was very much shielded from my family. I wonder what he would say today if we were to discuss autism. I will never know.
I know that today, my family and friends support me as best as they can, but it’s hard for them not to resort to the unhelpful statements that totally invalidate autistic people, you know the ones…
They acknowledge that I have differences — that much is obvious to them now. Yet, I still get the very frequent caveats:
“But you don’t look autistic!” “But you don’t seem autistic!” “But you communicate so great!” “But you were reading chapter books in kindergarten!” “But you graduated college!” “But you’re a therapist!” “But you love going out with your friends!”
I was watching an episode of Love is Blind recently (I could write a whole blog about this season lol) where Bliss says,
“But” negates everything you just said. So say “and.”
I’ve never heard that before and I loved it. I wish they would list all my strengths, AND acknowledge my differences. Because that would finally feel like they recognize how much harder I had to work to navigate through life as an unidentified autistic child, and what that means for me now as an autistic adult. It’s a learning process for them and to be honest, although I can be a strong advocate and educator, I wrote in a previous blog how burnt out I got by constantly explaining myself in a way that is successfully received by my loved ones. I can’t lie, I haven’t found a solution to that yet. On days were I feel up to that challenge, I still do try to help them understand. On other days, I stick with sharing these thoughts and feelings with other neurodivergent people who do get it. This is a completely necessary form of self-care for me — connecting with people with lived-experience. It recharges me.
This has created a fire in me to help loved ones of autistic children and adults learn how to understand them, support them, and communicate with them in a neurodiversity-affirming way. I have coached parents on how to meaningfully engage with their autistic child, and I have coached spouses on how to support their autistic partner through a meltdown. I believe that a lot of this depends on how open-minded the loved one is, and how ready they are to receive and integrate this information.
Unfortunately, I can’t go back and teach them what they didn’t know then. I can, however, teach my adult self to recognize my inner child in a new way, and that alone has been one of the most enlightening and liberating processes that I have ever personally gone through — and it is a gift I am beyond honored to help impart to the individuals that I work with.
