Trisomy X was discovered in 1959 in humans after it was discovered in Drosophila flies in 1929. The flies were often used in medical research in those days. The flies with three X chromosomes were nicknamed ‘super female’. This name is still seen every now and then, in social media groups and in scholarly publications. I already wrote a blog on ‘super females’. Short summary: We are no super females. We range from very feminine to nonbinary and trans male. Most of us are ‘usual female’. The extra X is part of who we are. It is not the single factor that defines us. This new blog is about another aspect of the ‘super’ wordings.
Toxic positivity
‘Super females’ sounds like we are perfect. And that is what some parents write to new or expecting parents on social media. The new parents often are afraid what this unknown condition may do with their child. The response sometimes is: ‘Do not worry, your girl will be perfect’. How well intended it may be, nobody can predict the future. So in one of my groups, we discourage this kind of responses.
Even worse it is when people write something like ‘We are capable of everything. So please tell your daughters that they can be anything they dream of’. Or ‘you can do anything with determination and hard work’. It may be true for the one who writes this. But it may hurt people who have tried very hard and did not succeed. It can also hurt parents of a child that is not doing so great. Positivity can be toxic. Kendra Cherry explains it very clearly at Vermicellerie
This kind of expectations has made me push myself far beyond what was healthy. My mental and physical health were in danger.
Chromodiversity, neurodiversity
Trisomy X has a wide range of symptoms that often are mild. Although an estimated 85% of women with an extra X is never diagnosed, it can come with significant issues. Language delays are common and also signs of conditions now gathered under the umbrella of ‘neurodiversity’, like autism, ADHD, dyslexia.
Some children with X and Y chromosome variations behave in a way that is difficult for ourselves and for our parents and caregivers. In our groups, parents sometimes ask what to do with the ’temper tantrums’, the ‘big fits’ etc. One mother wrote her girl ‘was giving her a hard time’. Bad behavior, bad child? Later on in life, some of us are diagnosed with DSM codes like autism, ADHD, anxiety, depression.
What many parents and professionals do not know yet
Some children wit trisomy X (and XXY or XYY) process emotional experiences different. A study by Trixy Expertise Centre in 2022 has given lots of new insight.
Our body often responds more intense and gets back to baseline slower. Often, it is also more difficult for parents and others to see what our emotional state is. And it is difficult for us to assess and express our own emotions. This is a complicated combination. In adults, emotion recognition can also be more difficult.
Imagine: Not being fast enough to respond to a nagging sibling effectively. Being terrified by the dog ‘who only wanted to play’ and the human who does not take the dog away. The label in our shirt we do not even realize how much it bothers us, until somebody else notices we have scratched our skin.
This is not a matter of temper or a child that ‘gives her mother a hard time’. This is not a bad child: it is a child being exhausted and not able to ‘act reasonably’. Of course, a child is not allowed to hurt people or animals, to damage goods. But this child does not need more discipline. It needs help to deal with the situation. Brought back to being calm, being taken away from all the triggers. And at best: an adult or two who analyze the situation and try to prevent situations to escalate so much. Escalations are more likely when a child or adult is pushed over her boundaries. By the kind of statements I mentioned before, for instance.
Judging does not help
Judging a child on this, will not help the child grow. Judging does not help in any situation. Not when it is in a bad way, nor when it is in a ‘good’ way. We are no super females, we are not always ‘capable to do all we want’. We are no bad children or bad adults. We are just part of human diversity.
The kids who need the most love will ask for it in the most unloving ways
source unknown, maybe Russel Barkley
Support does help. From parents, people in our neighborhood, professionals…. Understand we can act younger than expected for a child our age. We may need more time to learn to regulate our emotions in mind and body. Help us by being the safe and stable haven when we desperately need it.
They say it takes a village to raise a child.
A child or an adult with an extra X definitely needs that village.