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.

I Haven’t Forgotten My Chinese Orphanage Friend

Hello. My name is Thomas Fernandes but everybody calls me TJ. I was born in Nanjing, China in August 1998 as Yu Ming Yang. I was found with baby formula at only 4 months old which makes me honestly feel that my Chinese family cared about me.

I was adopted by awesome family at the age of 6. I have three siblings and my older brother was also adopted from China. My parent also adopted my sister from India. I was also born deaf with microtia which is an ear deformity. My sister from India is also deaf like me. This mean that when I was adopted into the family, the communicate was not that hard because they were already familiar with creating an environment supportive of deaf kids. We would communicate by pointing to things and using actions. My parents were a doctor and nurse so they knew medically what was best for me. I am truly grateful for what they have provided to me and my sibling.

I was 7 years old when I started to learn my first language which was American Sign Language. I used sign language until I got my hearing aid at around 8 years old and from then, I was able to learn how to speak English. I went to the South Carolina School for the Deaf until 8th grade. Then I went to MSSD (Model Secondary School for the Deaf) which is on Gallaudet University (a well known university for deaf and hard of hearing students). After graduating from MSSD, I am currently at RIT (Rochester Institute of a Technology) for my IT Technician major (3rd year). I am also currently studying Korean and Chinese at the same time.

In thinking about my past, I learned that my orphanage, known as Changshu Children’s Welfare Institute (in Nanjing, China) is a place for children who have a disability and with special needs such as down syndrome, cerebral palsy, blindness, deafness and heart disease. The nurse put me in a room where it has many beds and I remember that my bed was near the wall. I did try to make a friend but I noticed their mouths moved a lot and I knew that they were hearing. I tried to talk with them but I didn’t know how to speak Chinese.

Lucky for me, I did make one friend and she didn’t talk. She was very hyper so I decided to hang out with her. Surprisingly her bed was right next to me. We always communicated a lot about what we saw in the books and on the television. Her and I would always watch Teletubbies shows and my favourite character was the red one. I think she might have been deaf too because she seemed normal to me.

One day I saw her with a group of people. That was when I knew she was going to be adopted. I was deaf at that time and didn’t have a hearing aid. I tried to get her name so I ran to school (in the orphanage) to get a note so that she could write her name and I could find her when I got older. But since she was deaf, she didn’t know her name either. I also didn’t know my name at that time. We only knew our character name but didn’t understand how to write it. So I went to nurse and pointed to her, then at the paper, trying to communicate – could she put my friend’s name on the paper – but they didn’t understand me. I was left crying and bawling hard because I wanted her to be my best friend for rest of my life.

I still think about her and wonder how she is doing. I hope I see her again one day. That was the most heartbreaking experience for me. I do think of her and hope she’s doing great. I hope she was adopted by an amazing family just like I have because she deserves it. Maybe I might find her someday, maybe in one of the groups for asian adoptees?

I wish I knew her name! Hopefully she’ll recognise my orphanage photo and remember me. If she does, she can contact me here.

Adoption Like This Has To STOP!

To my fellow adoptees who were triggered recently by the news about the Stauffer family who publicly told the world about rehoming their 4 year old little boy Huxley (of Chinese origins also living with autism).

I speak out with you in solidarity against the way some adoptive families and the adoption industry continues to treat us as a commodity! The recent coverage crassly reminds us of how traumatic our life has been .. the adoption wounds together with our bedrock of relinquishment trauma, gets further layered upon when multiple abandonments occur. I know when the “system” allows or facilitates re-abandonment like this (deportation is another form), we personally feel violated, as if it has literally happened to us, again.

I personally know adoptees who have lived this experience of being relinquished by multiple adoptive families – “rehoming” is such an impersonal term for an experience that is so immensely personal! What most people don’t understand is the trauma never leaves our being and it takes us decades to war through it – if we get through at all!

I want adoptees who suffered this experience to know, it wasn’t something wrong with you — it’s that there is SO much wrong with the current system of intercountry adoption that allows this to happen.

The recent experience highlights everything we adoptees speak up about that is wrong. We are treated like a commodity! Given away and discarded when it becomes too hard, not the ideal that the family signed up for (and purchased).

There is something inherently wrong with the mantra of adoption that everyone naively believes Huxley will be better off with his second family. This assumes that second time round, the agency and adoptive family will get it right — but our lived reality of adoption highlights that the process of matching is such a random lottery! The agency may do no better the second time round, especially when they have no incentive or punishment for either outcome, nor are they forced to be held accountable for failures like this or to report it.

I’m sure that you, like me, might feel mad about this situation because we continue to receive the message that something is wrong with us – that we are not good enough. As relinquished children, this is an internalised message we spend our lives fighting to correct! We often feel like damaged goods. Sadly, not even the best adoptive family in the world can ensure Huxley or others like him, come out of messes like this without lifelong consequences.

The system is wrong when prospective parents are not adequately assessed, educated from a trauma informed base, nor rejected. Not everyone should be given the privilege to parent us! It takes a very gifted and emotionally aware type of person to truly help an already traumatised child to heal, flourish, and feel accepted enough to be able to overcome their beginnings!

There is also not enough post adoption supports to ensure better long term outcomes. Governments and agencies treat adoption like a once-off transaction where their responsibility ends the day our adoptive parents take us home. They are rarely given adequate support and their “education” ends the day the transaction is complete, whereas we know, every phase of life opens up a new layer of complexities to unravel. We have no independent advocate who watches out for us long term to make sure we flourish and no reports exist on our long term outcomes over decades. There are certainly very few mechanisms for adoptees to report or take action at the time or later on, when we are mistreated or further damaged. Will Huxley be given a fund from the adoption agency or first adoptive family to provide him with a never ending supply of professional helps should he want – to wade through the maze of compounded traumas? I can’t imagine so! And when we speak out about experiences like this, our voices are usually silenced in preference for the adoptive parents and it is expected the child should “move on” as if a “magical other adoptive family” will “fix us”, so we can live happily ever after! Problem is, we are not living a fairy tale and the next adoptive family is probably not given extra post adoption supports for life either!

The myths in adoption such as “forever family” create unrealistic ideals of adoption that add to the mountains we adoptees and our adoptive families have to overcome. Even with the best family and resources, sometimes there is just too much trauma and sometimes, nothing ever makes it better! Do they teach prospective parents this to set more realistic expectations?

What makes this recent experience for Huxley so triggering for me, is the lack of respect for his personal journey and struggles – his journey made public from day zero with almost a million viewers seeing every detail! His additional challenges publicly displayed to the whole world. That the family monetised their YouTube channel off the back of his trauma is unforgiveable and he will one day consider all this when he’s in his 30s or 40s and ask all the questions we adult intercountry adoptees ask now — how could a family do that, when they are supposed to be supporting and loving? Was it ever really about him or them? We are not a cockle or a peacock to be displayed and show cased when it suits for adoptive parents to be seen as a saviour! Our journey is a lifetime of trauma and loss! Ignorance on a scale like this only acts to compound existing traumas. I wonder if he’ll consider it abuse when he’s older? I would.

It is not okay to participate in an adoption system that churns and spits out adoptees as if we are a gidget with no feelings or soul! We are of immense value, we are vulnerable and deserve better. If this is how intercountry adoption is conducted, we should be all shouting out for it to stop until it’s done in a more appropriate manner that respects us as human beings and teaches families that you either take us with all our gifts and challenges – or you let us go, help us stay with our family and culture, or with another family who has the capability to be there for us long term! With the sheer volume of adoptee led platforms in cyberspace that provide education and insight into our journeys, I wonder how any adoptive parent or agency can continue to claim ignorance and naivety.

I hope the collective anger we adoptees feel right now will encourage us all to shout out from the roof tops about our experiences and free ourselves from the inherent shame we feel in being abandoned and rejected. This is not our shame to bear – it is a system that perpetuates further trauma onto our already traumatised bedrock.

For adoptees who experience rehoming, it’s abandonment multiple times. There is nothing wrong with us but everything wrong with a system that perpetuates a type of people who adopt from a naive and grossly inadequate understanding, fooling themselves into believing they can rescue us – only to fall flat on their faces. I’m a parent of a child on the autism spectrum. I totally know how hard parenting can be – but I’m also an intercountry adoptee with foundational traumas and I understand how important it is, that we get this right so that the trauma vulnerable children live, is no longer compounded by the damaging system we see glaring right in front of us!

Note: I have been astounded by how many amazing and astute adoptive parents exist out there in cyberspace who have been as angry about this as I. I hope that you too will turn that anger into encouraging adoptees to speak out and be heard. Help to elevate our voices!

Resources

Reuter’s Rehoming Expose

Since sharing my thoughts, I have seen many other intercountry adoptees writing and sharing theirs! Wonderful to see our voices coming out of the dark and giving exposure! Here’s a list of what’s been written since:

https://redthreadbroken.wordpress.com/…/myka-stauffer…/

https://gal-dem.com/huxley-adoption-story-youtube…/

https://www.mother.ly/news/myka-stauffer-adoption (this article includes Prof JaeRan Kim, also an intercountry adoptee and the only academic who has so far researched intercountry adoption breakdowns)

https://taylorshennett.wordpress.com/…/a-chinese…/

https://stephaniedrenka.com/open-letter-myka-stauffer/

https://www.buzzfeednews.com/…/huxley-stauffer-youtube… (this article includes Susan Cox, also an intercountry adoptee who works for Holt International)

https://www.insider.com/im-an-adoptee-im-tired-white…

https://danielibnzayd.wordpress.com/2020/05/29/adoptive-parents-not-your-story-to-tell/?fbclid=IwAR35OG2l4M28K4M2-AfcorS7yIW9DjHI_I9sXJim7MJ6QUL7vATtI2Dzb