My Nephew has Foetal Alcohol Spectrum Disorder

My nephew has foetal alcohol spectrum disorder (FASD).

Charles* has multiple cognitive and physical disabilities due to exposure to alcohol during pregnancy. He also has ADHD, which is a frequent associated and/or secondary diagnosis with FASD and  he is bipolar. We don’t know whether or not the diagnosis of bipolar is an associated diagnosis or if it is a secondary diagnosis like Charles’ diagnosis of ADHD. Charles has FASD: a disability he developed in the womb.

I don’t normally write about Charles’ diagnosis mostly because I find the judgemental responses infuriating. Almost everyone responds with something about “one of those families” as if alcoholism was only prevalent in poor families living in sink hole estates a la Shameless. I’m never entirely sure what the correct response is here but I usually respond with the wrong one: he’s adopted. Charles is adopted but the only reason I need to share that with people is because, subconsciously, I don’t want strangers to know we are “one of those families”. It’s an offensive response and I hate myself every time I say it to those who judge.

I wouldn’t have written about Charles here had it not been for the reaction I have seen on social media to the Telegraph’s “Drinking alcohol during pregnancy could be ruled a crime“. As a radical feminist, I believe no one has the right to tell a woman what she can and can not do with her body. I support abortion up to 40 weeks because I believe women know what is best for them. I believe any attempts to curtail women’s bodily autonomy – abortion, breastfeeding, tattoos, sexuality, medication – are based in misogyny. It is nothing more than the continuing perpetuation of male domination and oppression of women.

Yet, my nephew has a disability caused by his birth mother’s consumption of alcohol during pregnancy. Every day I wish his life could be easier for him: reading, playing and understanding his emotions. He struggles as a consequence of his mother’s illness. I find it hard to separate my politics from my love in this situation. I worry when I see women drinking alcohol during pregnancy. I instinctively want to tell them to stop. I know what the risks are for FASD. I’ve read the research and I know. But, knowing doesn’t stop the worry.

What I do know is how to prevent further children from being born with FASD. And, it isn’t criminalising women whose alcohol misuse results in their child being born with FASD.

Charles birth mother’s alcoholism was a direct result of the life time trauma of male violence. If we want to prevent further children from being born with FASD, we need to eradicate male violence. We need to end child sexual abuse. We need to end physical and emotional abuse of children. We need to start believing children who disclose abuse.

I know Charles’ mother’s personal history because it was an open adoption. We have constant contact with Charles’ extended birth family. I know why Charles was placed for adoption and why my sister was chosen to be his second mother. I also know this wasn’t a real “choice” for his birth mother.

This is why we also need the following:

  • a fit-for-purpose child welfare system which is child centred.
  • real social programs supporting parents
  • alcohol/ drug rehabilitation programs which care for women who are pregnant or with small children that doesn’t involve them losing custody of their children
  • adequate education programs within schools to help children with FASD
  • we need a criminal justice system which is victim-centred
  • a real healthcare system supporting women through pregnancy and whilst raising their children

Whilst I believe criminalisation is the worst possible way to prevent children being born with FASD  and I do not believe, as a radical feminist, anyone has the right to make decisions about a woman’s body, I’m also incredibly uncomfortable with the “well I drank during my pregnancy and I’m fine” response to the reality of FASD. Personal anecdotes do not make research-based evidence, particularly considering how much research there is into how the general public continually underestimates the size of a single unit of alcohol.

I’m disgusted by suggestions that alcoholism is only a problem for poor women living in sink hole estates and that a child born to a middle class mother can’t possibly have FASD. We are causing actual harm to women and their children by refusing to acknowledge the reality of trauma due to male violence and that this trauma isn’t class-specific. We are causing harm to children by suggesting that FASD is caused by buckfast and not over-consumption of sauvignon.

If we want to help prevent more children from being born with FASD and help support women to raise their children to the best of their ability, then we need start talking honestly about the reality of FASD, male trauma, violence and stop pretending FASD is only a problem for some other people over there. Accurate diagnosis can help children. Pretending that middle class children can’t be born with FASD stops them from getting help.

As  a radical feminist, I believe that women’s bodily autonomy is sacrosanct. As an aunt to a beautiful nephew with FASD, I worry.

I do know, right now, we are failing everyone: we are failing mothers and we are failing children. And, we all deserve better.

*Not his real name

4 thoughts on “My Nephew has Foetal Alcohol Spectrum Disorder”

  1. Oh you are so damn wise. I am so sorry about Charles. It must be so hard to see how difficult is life is. And the knowledge of the fact that this would have largely been preventable. And even with that personal impact you still support full body autonomy for women up until birth.

    There is also such an acceptance of drinking to the extent that people DO drink too much regularly and it is an acceptable thing to do. That is a very difficult to thing to oppose without seeming dictatorial.

    Anyway, as ever, beautifully written and essentially kind.

    1. It breaks my heart seeing Charles struggle and knowing that it was entirely preventable if we lived in a culture which clearly addressed the issue of male violence and properly supported women and children.

  2. Better mental health and substance misuse support funding would also incredibly help to stem the number of babies born with FASD. But therein lies the problem, this society has multiple layers of oppression including ableism and classism, the effects of which the patriarchy magnifies in women.

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