by Jodi Gibson Moore born in the UK and adopted to Northern America.
This is part 1 of a 3 part series written for Autism Awareness Month.
April is Autism Awareness Month
That’s what it’s been known as, anyway. Light it up blue. Puzzle pieces. Be aware of the ways our autistic kids differ from neurotypical children. Donate to “Autism Speaks.” And perhaps the most cringeworthy, “help us find a cure for autism.”
As an autistic adoptee, not diagnosed until adulthood (41), the puzzle piece has always represented adoption to me. The missing piece. We are the missing piece from our blood families. We ourselves are missing our blood family (or in the case of kinship adoptees, our rightful place in it and at least some of our family). We’re missing our origin stories; our true names; our original birth certificates; our actual, unaltered identities; our family medical history…the list goes on. This puzzlement over our origins may eventually be resolved in reunion; for some adoptees, it never is.
One of the often-cited autistic traits is the ability to notice patterns in things, so maybe that’s the reason why, since I began pursuing my own medical diagnosis, I’ve been noticing similarities or symptom overlap between developmental trauma (adoptee-specific and otherwise), autism spectrum, and other conditions often comorbid with ASD such as ADHD and sensory processing disorder (SPD). More about this in future posts.
In an autistic context, the puzzle piece has an entirely different meaning and, perhaps not surprisingly to a population historically considered unable to speak for themselves, was developed and “used without input from the autistic community” (Crosman, 2019). Crosman explains that the originator of the puzzle piece symbol was “Gerald Gasson, a board member for the (UK) National Autistic Society. He and the rest of the board believed that autistic people suffered from a “puzzling” condition, so they adopted a logo of a puzzle piece with a weeping child, displaying the notion that autism is a tragedy that children suffer from. This visualization of autism has led to decades of autistic people receiving unwanted treatments and therapies to treat a disease that they don’t have.” (from “The Ableist History of the Puzzle Piece Symbol for Autism”, 2019).
Crosman draws the puzzle piece debate into modern times with the puzzle piece ribbon symbol designed by the Autism Society of America in 1999, supposedly to raise awareness and increase early intervention, but she points out that this awareness usually involves “increased research of cures and treatments for autism” (2019), and intervention often includes controversial treatments like Applied Behavior Analysis (ABA). Crosman criticizes ABA for “‘correct(ing) autistic behaviors by forcing autistic people to mask their autism” (2019). Masking, which I’ll cover in another post, is the exhausting and not always successful task of attempting to pass for “typical” in order to make neurotypicals more comfortable around us. So much for inclusion and acceptance.
Crosman speaks for many autistic adults when she voices her criticisms of the puzzle piece and its implications that individuals on the autism spectrum are “incomplete” or “missing pieces”, suffering from a “disease”, and do not fit in with the rest of the world. Many autistics choose to discard the puzzle piece due to its ableist connotations and history; the infinity symbol, often in rainbow colors to represent the spectrum, is increasingly visible in the autistic community. Autistic females especially are replacing the “light it up blue” with red or gold, which, with the periodic symbol Au, can mean autism. Crosman (2019) points out that blue perpetuates the male gender bias in autism: historically, autism research was only conducted on males, and due to gender-biased diagnostic criteria, females are more likely to slip through the cracks in childhood, often pursuing a diagnosis ourselves as adults, as I did. Knowing now where the “blue” comes from, I’m not going to turn my Facebook profile picture blue this year.
The attitude that organizations such as Autism Speaks have toward autistic individuals, described by Crosman as “ableist” and “infantilizing” as they claim to speak for those actually affected by autism, reminds me of the way the adoption industry, the law, and society in general has treated generations of adoptees. As the original puzzle piece logo suggests, autism has historically been viewed as a childhood disorder, with very little discussion or research into autistic adults. Not to say the supports and accommodations in schools aren’t necessary. They are. But we don’t outgrow autism. What about accommodations in college, university, career training? What about supports in the workplace? In parenting? We often end up masking so that others won’t find out our “disability” and use it against us, and masking leads to burnout, as I will write in a future post. We grow up and we’re still autistic.
Adoptees also grow up, while the law treats us as perpetual children. Most of us aren’t even allowed access to our own birth records. We are bound for life to a contract that we never signed, supposedly made on our behalf, but after we reach the age of majority we’re still adopted, and most courts won’t even think about releasing us from it, including in cases of abuse. After our adopters die, we’re still adopted. People apply the phrase “adopted child/children” to us into our 30s, 40s, 50s, after we have children and perhaps grandchildren of our own. Laws are beginning to change, but there are still many who consider us incapable of speaking up for ourselves regardless of our lived experience and advanced education. I understand that a legal declaration isn’t the same as neurological diversity, but I also know how it feels not to be taken seriously as the expert on your own life and struggles.
The opinions and feelings expressed in my online autism groups leading up to this April remind me – in a good way – of adoptees coming together to “flip the script” for NAAM in November. Those who have not experienced our reality firsthand have spoken for us long enough, and now we’re speaking for ourselves. Our voices are diverse, but we’re not puzzled anymore. We’re finding our own fit.
I’ll be here all month.
For more from Jodi, check out her contributions to numerous publications including 4 adoptee anthologies:
It’s Not About You: Understanding Adoptee Search, Reunion & Open Adoption
The Adoptee Survival Guide: Adoptees Share their Wisdom and Tools
Adult Adoptee Anthology: Flip the Script
Adoption Therapy Perspectives from Clients and Clinicians on Processing and Healing Post Adoption Issues