When I was given the entirely too large stack of files from my childhood late last year, it was a lot to process. The files contained everything from my childhood; before and after Foster care and my adoption. It contained items such as newborn discharge paperwork, evaluations, IEPS, report cards, even short stories I wrote. Everything. I know this is a privilege and I am so grateful I have information. I am aware and understand that this is not a reality for many adoptees and I acknowledge that. However, with these files, also comes heartache and pain.
The first piece of information I stumbled upon was dated October 1, 1991. I was about 1.5 years old and about 6 months into being placed within my current foster family, who would eventually adopt me right before my fourth birthday. Before their home, I had been in a few other placements when I entered the foster care system at two weeks old.
Paperwork described me as bubbly, happy and sweet when I was residing with my previous foster home. I had visits with my first parents, which were sometimes bumpy but always consistent. I was developmentally on target and right where I was supposed to be.
There was a drastic shift in the way I was described after my move into my new home. It becomes clear, as anyone might expect, I was not adjusting well. As if I had not been taken from the most secure home I was in, as if I had not been taken for the third time from people I had grown to know as my mother and father. I was struggling. Due to my age, I lacked the skill of language to express my pain and trauma. Instead, this came out in my “refusal” and struggles with sleep, my “difficult” nature and what would soon be called as “stubbornness”. This stubbornness was the catalyst for future diagnoses. I was 1.5 years old.
The document that I first saw when I opened the (first) Manila Folder was a correspondence letter from a well known children’s hospital, more specifically, the Division of Medical Genetics.
“Enclosed is a copy of my genetic consultation notes of 24 Sept. 1991 on the above-named patient. If there are any questions, I would be pleased to try and answer them.
Best wishes,”
Taken from the original letter
The entire evaluation was difficult to read. It was full of bias and second hand accounts. Ironically, the notes from the in person assessment conducted that I was developmentally typical and on target. Basically, the doctor concluded, I was normal. However, they made sure to make it known that it does not mean much that I presented absolutely normal, considering my genetic and family history.
Impressions (Reason for Referral):
Developmental Delay (As per Foster Mother’s Report), particularly language.
Family History of Mental Retardation
Family History of Emotional Disorder (both parents diagnosed as having some type of schizophrenia)
Rule out Chromosomal Abnormality
I did not have a developmental disorder, but because of my family history it was not questioned when it was suggested by my foster mother. I have the same evaluations that this doctor was waiting to receive in order to complete the full assessment. These documents were the results of an actual developmental assessment that showed I had no developmental issues or struggles. Yet even though they did not have those in hand at the time of their assessment, they still moved along with the appointment as if I was destined for the same diagnoses as my first parents. I was supposed to be “faulty” and have problems, and there was no question that any behaviors or issues were the result of genetics and genetics alone.
At 1.5 years old I underwent extensive genetic testing (karotyping using peripheral blood) and chromosomal abnormality rule out testing (Plasma amino acid chromatography). I underwent this because I did not adjust well to my new family after being moved for a third time in to a third family (this not including the two weeks I spent with my first parents). I underwent this because I had a family history of problems and my parents had “significant emotionally disorders and mild developmental delays”. I underwent this because “for genetic purposes it will be of help to the —— Family in particular since they may plan to adopt this child”. I all of this even though I did not have expressive signs that I was developmentally delayed and even though there was no other factors considered for why I may be experiencing some struggles in my new home.
As I practice clinically and work with children, youth and their families experiencing the foster care system and adoption, I have noticed that my above situation is not that abnormal. Not all of the cases I have come across are as extreme as what I experienced. However, what I see when it comes to these genetic biases, runs across a continuum. They are fluid and changing, but they are evident in many adoptive and foster families in connection with the adoptive and foster children placed with them.
The term for this is Genetic Essentialism. This refers to the tendency to view a behavior as determined exclusively and directly by a genetic cause. This includes viewing the behavior as being unchangeable and having one exclusive origin because of genetics – even if there is little proof (Dar-Nimrod & Heine, 2011).
It was evident that in my case, the fact that I had just been uprooted from the family I had known and grown to see as “mine” did not seem to cross anyone’s mind. It didn’t cross my foster parent’s mind, it didn’t cross my caseworker’s mind, it didn’t cross those who had the decision making power in the court or child welfare system and it did not cross the above specialist and geneticist’s mind. The only thing that was clearly being looked at to account for my poor sleep, moody behavior and struggles in my new home were the fact that my first family had a lot of “issues”, therefore, that must be the reason I was not smoothly adjusting. The reason that I was destined to have “issues” and the reason I was struggling at that moment. At 1.5 years old.
In my work as a clinician, I help adoptive families navigate challenges their children face. This includes helping them avoid genetic essentialism. A child’s origins and absent genetic family can be an easy target for blame. Yet, it’s unhealthy and inaccurate for adopted kids to hear that their very existence shares the same cause as their most challenging problems.
Genetic essentialism is often based on good intentions such as wanting to protect a child from problems their first parents faced. For example, an adoptive parent who knows that addiction has a genetic component may over-emphasize their adopt child’s risk or propensity to use drugs if they know the first parents struggled with addiction.
There is a tendency in adoption to conduct genetic tests on children even when not medically relevant. Genetic ethicists rightfully voice concern about how this wrongfully labels certain children as undesirable (American Society of Human Genetics, 2000). I encounter families who have trouble viewing their children outside of those test results – even if the children don’t display any concerning issues. This is also something as shown above that I directly experienced myself as an adoptee.
I have also, encountered families and clinicians alike who may approach a child’s developmentally normal behavior (i.e. tantrums) as though there is a sign of a developmental delay when they are heavily influenced by the knowledge that a genetic parent had a developmental delay. Once again, something I have directly experienced. I quiet obviously did not have a developmental delay, however, it was enough to know that my parents may have experienced this diagnosis for it to become an obsessive thought (held my the adults in my life) to rule in or out for myself as a child. This lasted up until I left my home at the age of 17 years old.
Parents and children alike can feel troubled by information gaps in a child’s history. Children are particularly prone to answering unknowns about themselves with negative imagined answers. It is important that their parents avoid reinforcing this by blaming challenges on a child’s origins or genetics. Sometimes the most accurate answer to a challenge is “I don’t know.” Parents can model accepting this as an answer.
According to social learning theory, children influence their environment and the environment influences children. A child’s genetics cannot be isolated from this dynamic or exclusively blamed for their behavior.
Avoid having young children in the room when needing to share burdensome details of their genetics or origins they are not old enough to understand. Your child may misinterpret this as your opinion of them and silently carry this burden. If a child has to be present, be vigilant about the tone of your voice, our body language and your own presentation when relying this information. Children, especially adopted and foster children observe the details.
Children revel and celebrate how they are connected to their families. They know that families share traits, pass things down and share similar characteristics. If all your child hears about is how that negative behavior, mental health diagnosis or medical ailment is probably from their first family; How do you think that would make them feel about the rest of themselves?
Talk about the good things. Look for things that you can actually say with certainty about your child’s genetic traits. For older children, discuss the option of doing a genetic test to explore more of where their ancestry orginates from. Research different genetic activities that focus on learning what positive traits and characteristics are solidly tied to genetics and allow your child to appreciate them. Research ahead of time different genetic attributes that are scientifically accurate and also positive. Make this a special activity or time. Stay focused on things that you know for a fact are tied to genetics and that can’t be discredited later.
It’s important to be mindful of genetic essentialism and to be aware of your own biases in relation to how they may effect your adopted or foster child. Your intent may be to protect but the impact can still be harmful for your child.
References
Dar-Nimrod, I. & Heine, S., (2011). Genetic essentialism: on the deceptive determinism of DNA. Psychological Bulletin. University of British Columbia. Vancouver, B.C.
The American Society of Human Genetics Social Issues Committee and The American College of Medical Genetics Social, Ethical, and Legal Issues Committee (2000). Genetic testing in adoption. American Journal of Human Genetics. Health Law and Policy Institute, University of Houston, Houston, TX
Adoptee LIT 