The recent media on the finding that up to 17% of children could have FASD felt vindicating. Whilst it’s horrendous that so many of our children live with this preventable condition, it’s brilliant that more people are now more aware of its prevalence. It’s really alienating living with a condition that is so common yet hidden.
But what about the reaction in the adoption community?
It’s really hard to talk about FASD and adoption. FASD is the barely acknowledged condition that people might occasionally mumble under their breath in quiet corners. As if it might be shameful to even utter its’ name. Until recently our son was at a mainstream school with a high number of adopted children. But despite this, we felt isolated in identifying FASD. Some parents mentioned it and attended training. But generally the needs of adopted children were put down to the other go to diagnoses of attachment, development trauma, possible ADHD and sometimes autism.
For my stress levels, I need to stop going on social media for adoptive families. Because it is so frustrating seeing the number of people in crisis with issues that are so clearly FASD, going round in circles seeking the wrong diagnoses, pursuing the wrong medications and not able to get the right support for their children. My partner and I even got blocked from one site for raising the question of FASD – despite trying to do it with kindness. And what was the reaction to the news on the 17%?........no comment.
There is an urgent need to get past this stigma and shame. Research in the North East found that in 75% of medicals for adoption, children had been exposed to alcohol in the womb and it would be my guess that this wasn’t at particularly low levels. Research also shows that even low levels can have an effect on brain and CNS development.
The current treatment of FASD as an exception for adopted children needs to be flipped on its head. Whilst development trauma is a category that sometimes includes trauma in the womb, I feel alienated by this veiled and woolly reference to ‘trauma’ and lack of specific mention of the damage caused by fetal alcohol. Yes, development trauma and attachment issues are often in the mix too but the majority of adopted children are somewhere on the fetal alcohol spectrum. I know many people will balk at this statement – the majority?! But it seems obvious that this is unfortunately the case. With the complication of other drugs and violence in the womb in the mix too.
Why is there so much denial of FASD in adoption?
I imagine one of the main reasons is fear, and I get that. FASD is a permanent condition and there is less potential to fix or heal it than trauma or attachment. The fact that so many of our children have permanent organic brain damage is far from pleasant or comfortable. FASD is also so much more stigmatised than conditions like ADHD and autism and reveals something about the child’s origins that some may not be comfortable with. Perhaps if your child is on the very mild end of the spectrum it’s easier not to go there. And with so few professionals acknowledging it, the route to diagnosis is often difficult. Identifying and diagnosing it is no panacea. It is still hard and scary.
There’s also the potential for self-blame over not knowing. I feel I was naïve in my ignorance about FASD and in not asking questions about it. I feel like we were taken for mugs by the system and these are difficult emotions to face.
But it’s easier now I’m part of the F mums – a group of adopters who identify that their children have FASD. They feel they were naïve too. And a shocking majority of them were initially told by professionals that their children didn’t have it.
Helen’s children were assessed by their local health authorities specifically for FASD due to their unusual eye shape and she was told that they didn’t have it.
Kate was told it was attachment disorder and not FASD because her daughter didn’t have facial features. Despite obvious facial features only affecting 10%.
Elizabeth’s biggest fear was adopting a kid with FASD because she’d read bits of scaremongering. “I feel so ashamed and guilty for saying this, she says, but as older adopters we felt we couldn’t take on a child with mental health problems. I thought it was easy to spot in a child: that’s how little I knew about it”.
Jenny’s words to the social worker were “We’d like to be parents, not carers”’ She spotted something wasn’t right with her daughter within weeks. “No one ever mentioned FASD or even just alcohol and drugs. We were told mum looked after herself as best she could!! My heart melts for my kids but at the same time I’m angry for what it’s doing to my life and theirs.”
Elizabeth is also angry. “The denial perpetuates the shame about FASD. It is really quite unforgiveable. Oh it’s ADHD: medicate him so he behaves in school. Oh it’s behaviour issues: put the parents on a course. Oh it’s sensory processing: put him on a three year waiting list and then say he doesn’t meet the criteria even though we haven’t observed him. And when the parents can’t cope just put them on antidepressants and send them on a CBT course because they need to change their behaviour and be more positive.”
FASD will never be prevented or effectively treated if it remains in the stigmatised shadows. We adoptive parents are struggling to do everything in our power to support our children who we love so much with a condition that can be devastating. Knowledge, understanding, diagnosis, support and treatment make it easier. The denial of FASD by professionals and the adoption community make it considerably harder.
I’d love to hear in the comments on why you think FASD is avoided by so many adoptive families. Also if you have gone down the FASD route, how did this come about? Was it through your own research or was it suggested by a professional?