Puzzle Pieces

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

The Duality of being Disabled and Adopted

by Erin E. Andy (지현정), adopted from South Korea to the USA.

March is Cerebral Palsy Awareness Month.

As someone who has lived with this condition all my life, I can say it’s a struggle. As someone who is a transracial intercountry adoptee on top of it, I have felt conflicted about my identity.

There are times my limbs do the opposite of what I want them to do. There have been times I’ve had difficulty getting out of bed when my body is too fatigued by the spasms. There have been times I’ve had to take extra doses of medication to calm myself so I can function in my daily life. There are more times than I would like to admit being stared at for the way my body acts. I’m fully aware of the judgemental looks I receive, which makes my body involuntarily tense up even further. I can never hide my excitement or nervousness as my Cerebral Palsy gives my emotions away.

When people joke about “maybe I should use a wheelchair instead of walking”, it comes across as insensitive. Yet those jokes persist. It can be tough at times to see people mock those of us who can’t control our bodies.

Growing up with Cerebral Palsy, it was difficult enough to fit in, constantly being reminded by my wheelchair and its restraints that I was different. However, on top of coming to terms with my disability, I had to face another aspect of my identity: being a transracial intercountry adoptee.

Within my adoptive family, I felt somewhat comforted knowing I was being raised with other Korean adoptee siblings as well as having a dad who is of Japanese descent. However, going out with my mom was a stark reminder that I was adopted. I don’t look anything like her, and seeing strangers looking at us curiously made it clear that this was different; that I was different. Only when our family attended campouts with other families with adopted kids did I feel comfortable. I wasn’t the only one who was disabled and adopted. I felt accepted. They normalised my existence.

With that said, it was difficult as I grew up to come to terms that my biological family relinquished me. I often wondered why. I was told they were trying to give me a better life, but the pain and rejection of being given up is difficult to reconcile with their good intent.

I never asked to be disabled. I was angry they gave me up so easily. I never understood the reason, at least not for quite some time. I was given up at the age of five, so I knew my biological family, but even so, they made the choice to relinquish me to Holt Adoption Services. I stayed in a foster home for a little while until the adoption agency found a family to adopt me.

Upon going back to Korea in 2014 for a reunion with my biological mother and seeing my homeland again, I came to an uncomfortable realisation: I hardly saw anyone in a wheelchair on the streets in Seoul. I didn’t see anyone else like me outside of my tour group who had a physical disability like Cerebral Palsy. It wasn’t until we went to an orphanage in Ilsan that I saw a few people with physical disabilities. I was confounded and ultimately disappointed. After coming back from Korea, I saw videos and articles over the years of how they viewed the disabled.

Would I have been here in the USA if I had been born head first and given the oxygen I needed to avoid having this disability? What would my life have been like if I stayed in Korea? Would I have been placed in an orphanage as I grew older, or would I have been sent to an institution to live the rest of my days hidden away from the outside world? To this day, I ponder what my fate would have been, had I not been adopted.

My adoption came about because of my Cerebral Palsy, but the struggle of each doesn’t deter from the other. While I still mourn the life which could have been had I never been disabled, I know this life is worth living, here in the USA.

I have a loving husband, many friends from various places, families who care about my well being, and perhaps the biggest thing, the ability to thrive.

I never asked to have Cerebral Palsy or be given up for adoption…

But, even so, I’m here. I exist. My condition is not who I am nor should it define me.