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.

Wearing Your Fate

by Bina Mirjam de Boer adopted from India to the Netherlands, adoption and foster care coach @ Bina Coaching.

Recently it was announced there is a surrogate company in Ukraine which will remain with hundreds of ordered but undelivered babies due to the coronavirus. They can’t be picked up during the lockdown by their foreign parents. In RTL 4 news post we see upset nurses and hear the lawyer of the adoption company talking about the importance of these babies going to their foreign parents as soon as possible.

The bizarre thing is that by commissioning the surrogacy and / or the adoption company, these babies are taken from their mother, their origins and their birth country and end up in a family in which one, or none, of the parents are genetically their parent.

On Monday 18 May, the lawsuit by adoptee from Sri Lanka, Dilani Butink was aired whereby she is suing the adoption organization / permit provider Stichting Kind en Future and the Dutch State. Her case shall hold both parties liable for her fraudulent adoption. This is because the Dutch state and adoption organisations and / or licensing holders, have known about the fraudulent practices and trafficking of children from the sending countries for many years. Nevertheless, thousands of children have been legally adopted (and without agreement) from their motherland to the Netherlands after discovering the trafficking. Yet we are still focusing on putting the wish for a child first.

Currently, the Dutch government is working on adjusting the law for surrogacy. Under its guise and around the wild growth of baby farms, the surrogate and child need to be provided protection from surrogacy abroad, but Ukraine does not offer this. It is pretty weird because the cause of this law ie., creating children in a “non-natural” way affects this child’s right to exist. Whoever reads this bill soon sees that the child’s rights and safety of the mother is not sufficiently protected and / or respected. The reason for this law is that we still have international adoption and conception of children through a donor surrogate mother and it is not a fairy tale or an altruistic thought.

Thinking about what my adoptive parents used to say when asked if I was grateful to them for my new life, namely they answered that I didn’t have to be thankful. This is because they wanted a child so badly and were so selfish, they let me come from abroad.

In most cases, the wish for a child is not a wish to make a child part of your life but a biologically driven desire to reproduce or to have a child of your own. If it were really only about the child, the thousands of forgotten children who live in children’s homes would be collected by childless couples. That we live in a world where the wish of having our “own made” child is exalted above the child’s wishes and health, ensures the financially driven market continues to function that dominates the adoption, donor and surrogacy world.

To realize this wish for a child at all costs, ways are being used that cannot be done without medical or legal surgery. Overseas mothers are helped to give up their child instead of breaking taboos or helping the mother raise the child herself, or leaving the legal family ties intact, which is best for the child. The influence of distance (legal parenting to be elevated above genetic parenting) on a human life is still compartmentalised, denied and ignored, with all the consequences.

Despite all the stories of adult adoptees and adult donor children about the influence of distance and a (partly) hidden past or the low performance rates of composite families, the wish for a child remains elevated above the child’s wishes.

In 2020, we are apparently still not aware that these actions not only relieve wishful parents of the unbearable fate of a childless existence, but also dismiss them from their responsibility to carry their own destiny. At the same time, we ensure that these children are burdened unsolicited, with an unbearable fate. Namely, a life with a hidden and a made identity. I don’t want to say that a childless couple has no right to a child in their lives but there are other ways to let a child be part of their lives without giving a mother and child an unbearable fate.

Adoptees often don’t know who they are, when they were born, what their age or birth name is, which family systems they originated from or what their operative story is. They are raised with the idea that they belong to a different family from which they originated genetically. However, this legal disinheritance does not cut the adopted from his original family system (that is impossible) but they have to discover in their adult lives that the foundation on which their lives was built is not the right one. Donor children are looking for the father and find out that they have dozens of (half) sisters and brothers or that they are twins but come from different donor fathers. Both times, it’s a question of demand for a child and making it available.

Many adopted people come to the discovery at some point in their lives that they live with an unbearable fate, they live in a surreal story that they missed the essence of but experience their emotions in their bodies. This also makes you hear adoptees often say they feel like they have to survive instead of thriving.

I hope that the legal trial of Sri Lankan adoptee Dilani Butink will contribute to an increasing awareness and cessation of child trafficking in any way and that we leave fate and responsibility where it belongs. As a Korean adoptee once said, “Do you prefer to die of hunger, or death from sadness?” .. a sentence that I still regularly observe during group meetings with adoptees.

I am aware that not being able to have children is an unbearable fate while at the same time I notice and work daily with the effects of the consequences of distance and adoption. And this is also unbearable for many, unfortunately we adoptees and donor children cannot put away our fate and the responsibilities we have received and this is a burden that we must bear unwanted as a life sentence.

I also hope that the legal trial will contribute to getting assistance. In 2020, governments still do not take full responsibility for looking away from these forms of child trafficking in intercountry adoption and its consequences. In the end, in my opinion, the question remains: do you dare to take responsibility and carry the fate you received? It is a choice to live without “homemade” children or you charge another person with the fate to live without his or her original identity, family and culture.

Please let’s learn from history and not use children as enlightenment of fate but carry our own destiny.