Autism and Adoption

by Jodi Gibson Moore born in the UK and adopted to Northern America.
This is part 2 of a 3 part series written for Autism Awareness Month.

April is Autism Awareness Month

I always knew I was “different”. It took 40 years of almost continuous searching to find the right words for my kind of “different”, although being internationally adopted had a lot to do with it. My father’s sister took me from my home country when I was 21 months old, with the help of her mother, my paternal grandmother who was my guardian at the time. My aunt and uncle finalised their adoption of me when I was almost four. They would have told anybody that I seemed to have “adjusted” to the multiple disruptions in those early years but my behaviour screamed otherwise and I never bonded with either of them.

Growing up, I always knew I was adopted; I don’t remember being told or having to be told. My adopters told me about my flight from England with the woman who adopted me and her mother, my grandma. They talked about me being sick on the plane and how surprised the man who would later adopt me was when he picked up his wife and mother-in-law at the airport, and there I was with them. They laughed at my childish attempts to say their first names. Later, they would punish me for calling them by their names. I always knew they weren’t my parents but they wouldn’t answer any of my questions about my parents or my origins. I was told I came from the puppy farm, like Snoopy in the comics and I learned they expected me to pretend I was their daughter or else I would be lectured and punished. That didn’t sit right with me. I knew babies came from their parents and since I hadn’t come from them, they weren’t my parents. They made me go along with their pretend game but I got in trouble for pretending and making up stories. I was 12 years old when the woman who adopted me finally told me she was actually my aunt. I was angry at her for lying to me all this time and betraying me but I was glad I finally had a category to put her in: auntie. When I told her I wanted to call her that and her husband “uncle”, she yelled at me and told me not to. I had broken the rule of not upsetting her, so of course it was my fault, not hers for keeping a secret from me for ten years. She apparently had a medical condition and I wasn’t allowed to say or do anything to upset her and my uncle, who hadn’t wanted children in the first place, had a bad temper and yelled a lot. Instead of blaming him, she used to tell me she’d never heard him shout before I came along – so that was my fault too. They had me walking on eggshells the whole time I lived with them and I was too clumsy not to shatter them.   

At the age of 41, I finally received an official medical diagnosis of autism spectrum disorder, Asperger’s subtype (this was around the time the DSM-5 did away with the separate diagnosis of Asperger’s and merged it with autism spectrum, so the updated diagnosis is level 1 ASD) along with ADHD, sensory processing disorder (SPD), and developmental coordination disorder/dyspraxia. Had I been diagnosed in early childhood, doctors, educators and my aunt and uncle adopter would have understood why I had trouble focusing at school or transitioning between activities, didn’t always understand verbal instructions, wanted to wear dark glasses even on cloudy days, didn’t like making eye contact with others, talked more comfortably with adults than children, “switched off” at times, and couldn’t stand on one foot for more than about three seconds. All of the symptoms were documented in my medical files when I was 5 but that had been the late 1970s and there wasn’t much awareness of “high functioning” autism back then, especially in girls.

As I was trying to decide how to approach this topic, the intersection of adoption trauma, international adoptee status, and disability/neurodiversity, it occurred to me that there is much symptom overlap and several parallels between developmental trauma and autism spectrum, along with other conditions comorbid with ASD. These conditions include, as I mentioned above, ADHD, SPD and other possible processing differences that impact how we take in information. We may have trouble understanding instructions for a variety of reasons. I remember being a little kid in daycare trying to open a bag and getting yelled at repeatedly to “untwist the wire.” I didn’t know the strip of green paper concealed a wire. All I saw was paper. The daycare woman didn’t have a lot of patience with me or think very highly of my intellectual abilities. Between her and my aunt and uncle adopter, I grew up feeling like I was stupid. My aunt constantly spoke in euphemisms or British colloquialisms that nobody else around me used and I couldn’t understand what she meant and she wouldn’t explain them for me. It was like a secret code I couldn’t crack, or a foreign language. She just didn’t like to call things what they were, the same as when she refused to tell me what she knew about my background, which deprived me of a lot of the grounding and structure I needed. I learned not to trust her. I learned to be ashamed of the ways in which I was different; I learned to hate myself for the things that set me apart from everybody else. Very few people focused on my strengths, but everyone commented on and most made fun of, my shortcomings.

Is it adoption or autism?

I probably ask myself this question several times a day and more often than not, it leads to overthinking and no definite answers. Social anxiety, difficulty identifying or verbalising emotions, keeping lots of space between myself and others – “social distancing” is a way of life for me – and not knowing how to participate in group activities may be signs of hypervigilance and consequences of preverbal trauma rather than autistic behaviors. Not picking up on social cues? My aunt adopter thought I just didn’t want to pay attention and I don’t know how she perceived my inability to interpret her veiled speech. The fact I viewed the adopters as guardians instead of parents, literally as my aunt and uncle when I found out the truth, could be simply realism and logic. In my mind, my aunt and uncle couldn’t be my parents. I didn’t even meet them until I was almost two and I never felt close to them or safe with them. That could be autistic black-and-white thinking but there are other things I remember or have been told from my early childhood. I learned to read early when I was three, but even before then I could identify almost any car on the road. My uncle adopter used to laugh about the time he caught me lining up my grandma’s cigarettes in front of the fireplace, making sure they were exactly straight and doing the same thing with my toy cars. I’d prefer to use dolls to act out the stories in my head than play with other girls. Due to the neighbourhood and the fact my aunt and uncle adopters were old enough to be my grandparents, I didn’t have a lot of kids to play with other than their friends’ children. I always thought their age and the huge generation gap was the reason I didn’t really know how to socialise and “hang out” with girls my own age and found it easier to talk with adults if they didn’t intimidate me, but that seems to be another autistic trait.

Even hypersensitivity to rejection, which seems to be an almost universal part of the adoptee experience (after all, we perceive early maternal separation as a rejection or abandonment) can be attributed to rejection sensitivity dysphoria (RSD), a recently identified condition often comorbid with ADHD and autism spectrum. Autistic individuals tend to like routine and order, need to be prepared well in advance for changes or disruptions, and I can’t think of a worse disruption to a small child than being separated from their whole family in one day, uprooted from their home and placed with strangers in a different sensory environment. Strangers who look, sound, and smell different; strangers who aren’t tuned in to the child’s needs and could overwhelm them; strangers who want to touch and hold the child when the child needs to keep a safe distance and may have an aversion to being touched.

I often ran away from the adopters as a child and adolescent. Sometimes I’d walk far enough ahead of them so that nobody would associate me with them; sometimes I’d lose them in stores; sometimes I’d wander away from them on outings. I’ve heard that a lot of autistic children do this, perhaps because of impulsivity, distraction, or just a lack of concern for safety. For me it was an escape behaviour, the “flight” aspect of the stress/trauma response. I just didn’t want to be around them – had to get away from them. I might have been distracted by somebody who reminded me of a parent or someone else from home (this may often be the case with older adoptees) or I may have been hoping that someone would find me and return me to my parents – help me get back home. It never happened.   

In what some might call “typical ADHD,” my thoughts often go in several different directions, probably giving me enough material to write a whole series on neurodiversity and how it intersects with adoption, and maybe I will. But it needs to be said that adoption, and more specifically the act of early maternal separation sets us up for “trauma brain” regardless of genetic predisposition to certain neurotypes. I first read about Nemeroff’s (1998) research involving rat pups separated from their mothers for a few hours a day during infancy and the impact this had on their neurological development, the effects of which persisted into adulthood, in a psychopharmacology textbook (Meyer & Quenzer, 2018). Other researchers are still performing these studies and documenting the same outcomes: anxiety, increased sensitivity to stress, depression-like behaviours, emotional dysregulation, eating disorders, and metabolic disorders throughout the rats’ lifespan. And unlike the rats, we adoptees aren’t returned to our mothers or siblings when that phase of the experiment ends. It’s not a perfect comparison, but research ethics officially prohibit doing similar maternal separation experiments on human infants. At least, now they do. Watch the documentary Three Identical Strangers and see for yourself.

My doctor who diagnosed me several years ago with ASD and Asperger’s syndrome told me at the start of my assessment that childhood trauma doesn’t cause autism (for that matter, neither do vaccines); it’s a genetic condition. However, I believe that developmental trauma such as early maternal separation may have a deeper impact on certain neurotypes; we may be more sensitive to early stressors or less resilient. Trauma responses may increase – or be mistaken for – neurodivergent traits. For example, adoptees, especially those of us adopted internationally and/or after our first birthdays like myself, can display self-calming/self-soothing behaviours (Tirella & Miller, 2011) that resemble what would be called “stimming” in autistic children and which I would call an attempt at emotional regulation following a profound loss. We adoptees don’t always have, or eventually get, access to our family medical history so we don’t know what we’re at risk for but as the rat studies found, the non-separated rats developed typically while their separated littermates, who shared the same DNA, did not. We don’t have to have a documented family history of autism, ADHD, anxiety, or depression to develop these traits after a severe developmental trauma.

While there is more understanding over the last few decades of the neurological impact of early maternal separation or parental loss that precedes adoption, there needs to be more research into how this overlaps with autism spectrum, ADHD, sensory processing differences and other neurodivergent conditions. My hope would be that adoptees’ needs and vulnerabilities can be addressed in early childhood when we would most benefit from interventions – and perhaps more can be done to prevent these traumatic separations in the first place.

Resources:

Meyer, J. S. & Quenzer, L. F. (2018). Psychopharmacology: Drugs, the Brain, and Behavior, 2nd ed. Sinauer Associates, Sunderland, MA.

Tirella, L. G., & Miller, L. C. (2011). Self-Regulation in Newly Arrived International Adoptees. Physical & Occupational Therapy in Pediatrics, 31 ), 301–314.

See Jodi’s part 1 of a 3 part series for Autism Awareness Month: Puzzle Pieces.

Life Lessons from an Adoptee – Part 1

This is a series written by Tamieka Small, adopted from Ethiopia to Australia.

‘Your time is limited, so don’t waste it living someone else’s life, don’t be trapped by dogma, which is living with the results of other people’s thinking, don’t let the noise of other people’s opinions drown out your inner voice, and most important, have the courage to follow your heart and intuition.’

Steve Jobs

There are studies that show it is common for adoptees to create a false sense of self – usually between two identities – the perfect golden child who does everything for the approval of their adoptive families so they will never face rejection, or the rebel who may reject their families before they can reject them (again). The golden child can look a lot like the astute student who pours hours and hours into their classes, gets straight A’s, is terrified to get anything less than this, someone who never disagrees with their parents opinions or ideologies, and may claim there is nothing to complain about in terms of being adopted. They may end up being the type in fact (and of course you don’t have to be adopted to do this) but to live out the life their adoptive families want for them. They may want them to study to be a doctor, a surgeon, a scientist, an engineer instead of doing what their heart truly desires.

For me personally, I was definitely one of those types of false selves that adoptees may tend to fall into, the over achiever, the perfectionist, the one terrified of their parents’ disapproval, or letting my teachers and mentors down. For me ever since I was a child, I always wanted to be an artist. I knew deep down that’s what I wanted to be my whole life; and my parents were very aware of this. However, they tried to bring me back down to reality; saying that I had to be the best of the best in the industry like Picasso or Van Gogh to get anywhere in that field. They especially emphasised this when I got to late high school and had to think about seriously what I wanted to do in my life as a career.

I ended up choosing psychology as that was a science, something tangible and structured that I could follow according to society’s expectations. Don’t get me wrong-psychology; human and social psychology and behaviour does interest me but it didn’t ignite a fire or a spark inside me the way that art does. In the end I chose to study Animal Behaviour when I graduated and got accepted into university. When I was exposed to the outside world, the real world I realised how much of my life I was allowing to be dictated by my parents. I realised that I had to live my own life and my own dreams. And yes, it was scary to face my parents and tell them I was transferring to the Bachelor of Arts and I wanted to be an artist. But I paved a path in my life of so much self-discovery and knowledge; where I met so many wonderful people, I aligned with in so many ways. I don’t regret it to this day.

Let me just say this from personal experience to fellow adoptees; live the life you want to live, not what society dictates you should do; not what your family or friends think you should do – do what you want, what brings you joy, excitement, what makes your heart sing and your spirit soar.

Because when your family and those friends or whoever aren’t in your life anymore you are going to be stuck with the life and dreams that you made. No one else has to live it but you, and you will experience your happiness or lack of happiness, not them nor anyone else. You will be the one who will go to bed every night feeling either fulfilled or unsatisfied with the decisions you make every-day, so make sure you forge your own path, your own dream so you can find true happiness. It isn’t easy sometimes, but nothing in life that is worthwhile is.

Can Intercountry Adoption be Ethical? Does it do Good?

In this new 3-part series, Leigh Matthews at the DoGooder Podcast (also the co-founder of Rethink Orphanages), discusses with me the why and how of whether intercountry adoption does good and can it ever be ethical.

Personally I found this interview to be the most in-depth I’ve ever done on this topic. I had no pre-empting of the questions and by the end, I was a little shaken and rattled as I realised some of the content I’d spoken about wasn’t as cohesive as I’d would have liked because nobody had ever asked such intensive questions before. After all these years in speaking, I have usually refined the way I describe and answer questions because in repeatedly speaking on the topic, I get more succinct over time. This time however, my thinking/speaking is raw for a good portion of it and Leigh did a fantastic job of rattling me! She has a natural way of understanding this topic given orphanage tourism is so closely connected.

I can’t wait to hear the next two ladies in this series: Jessica Davis, American adoptive mother who returned her adopted child to her family in Uganda after discovering she had not been a true orphan nor relinquished with a clear understanding of our western legal concept of adoption. Jessica has gone on to found an organisation Kugatta to assist other adoptive families who find themselves in situations like hers. Then Laura Martinez-Mora, a lawyer and Secretary in the Hague Permanent Bureau team, responsible for the intercountry adoption portfolio who provides her professional perspective.

Our views together on this topic will help develop some much needed in-depth conversation about how intercountry adoption occurs today, whether it does more harm than good, and whether it can be ethical.

You can listen here.

Huge thanks to Leigh Matthews for the privilege of being involved in your podcast!

Biology doesn’t matter?

#4 ICAV Blogger Collaborative Series from Adoption Awareness Month 2019

An adoption myth

Do you have any family members who you would never have anything to do with if they weren’t family?

If you discovered your baby had been switched at birth and you had been raising another person’s baby, would you look for your child?

If you discovered you’d been switched at birth and had been raised by another family, would you want to meet your biological family?

Do you love to hear stories of family members who share interests or talents with you?
If there is a hereditary medical health problem in your family, do you feel you have a right know about it?

If a mother loses her baby before she gives birth and never meets the baby, will she grieve it?

Is a relationship with step family different to a relationship with biological family?

If you want to have a family, is your first choice to have a biological child?

If your answer is YES to one or more of these questions, then never tell an adoptee that biology doesn’t matter.

by Juliette Lam

My father was admitted to hospital yesterday as he had tightness in his chest and pain across his shoulder radiating down to his shoulder blade. The first question he was asked was, “Is there any family history of heart disease?” He was able to say, “My father had a heart attack, my brother had a stent put in and my sister also has heart disease, so yes there is.” This was then able to inform the medial team assessing him that there was a high possibility that this was heart related and so they could act accordingly.

When I was diagnosed with hip dysplasia back in 2010 the first thing I got asked was, “Is there any family history?” This of course was not the first time I’ve been asked that question. I’ve been asked that question my whole my life when I’ve presented for menial whatever’s. I’m adopted … oh right … sometimes awkward silence …. and therefore I don’t know.

The first thing we did of course when we found out that I had hip dysplasia, was get my daughter tested and bingo – guess what ?! It’s genetic!! She had it too. I was pleased but also sad that I had passed this on to her. I was pleased that for the first time in my life my newly discovered diagnosis meant I could help her catch hers early enough for her to still need surgery but not as invasive as what I needed to have. And there is the case in point, from a medical perspective on why biology matters.

by Kate Coghlan

Biology doesn’t matter. But they say blood is thicker than water.
Biology doesn’t matter. But more than 26 million people have taken a genetic ancestry test.
Biology doesn’t matter. But you have your grandma’s eyes.
Biology doesn’t matter. But I’m so happy you got your dad’s musical talent.
Biology doesn’t matter. But most states in the USA seal original birth certificates. Permanently.
Biology doesn’t matter. But DNA carries the genetic instructions for development, functioning, growth, and reproduction of all known organisms.
Biology doesn’t matter. But 406 episodes of Forensic Files kept TV audiences enthralled using biological evidence to catch violent criminals.
Biology doesn’t matter. But ‘Finding Your Roots’ is a primetime hit for public television in the USA.
Biology doesn’t matter. But an estimated 8 million children have been born worldwide using IVF and other reproductive technologies.
Biology doesn’t matter. But all I ever wanted was to know who my mother is.
Biology doesn’t matter. But mothers and the children they lost to adoption are desperately searching for each other, all over the world.
Biology doesn’t matter. But it does. It really, really does.

by Abby Hilty

Một giọt máu đào hơn ao nước lã / A drop of blood is worth more than all the water in a pond.

In the house I grew up in, on the second floor, there was a formal dining room and then a hallway leading to a large bathroom, a sewing room, the master bedroom and lastly my bedroom. On the wall opposite the dining room there was plenty of space for my adoptive parents to hang framed black-and-white photos of distant relatives who stemmed from both their family trees. In order to go down the hallway to my bedroom, each day and night, I had to pass by this orderly array of photos. Sometimes I passed right by them, sometimes, usually when I knew I was alone, I would look deep into the subjects’ eyes, so much so, that I’d start to believe they were staring back at me.

It was at these times, and in so many other ways, that I wanted someone with facial features, hair colour and physical stature similar to mine to peer back at me and explain the strange dissonance in which I increasingly felt trapped. But no help was coming because I was beyond help in some odd excommunicative aspect. No matter how much I tried dampening my distinguishable appearance, it carried me right back to my peers who generally judged me to not be wholly compatible with their cliques. As far as my adoptive parents and immediate family were concerned, I was theirs, for all intents and purposes, but when it came to innocuous remarks about familial traits or good-natured physical comparisons between cousins I was set aside and ignored. It was as if they were letting me know that this was “family business that doesn’t concern you.”

When you don’t resemble the people you’re forced to swim with in the big pond of The World, then you lower your body temp and try to cope and always look for an escape.

by Kev Minh

This is the last in the ICAV Blogger Collaborative Series that was created for Adoption Awareness Month 2019. Huge thanks to our ICAV Blogging team for their commitment and generosity in sharing their voices.