FASD across the Lifespan: Physical Problems
FASD is a lifelong condition. Despite the name of this neurodevelopmental condition beginning with the word ‘Fetal’, Fetal Alcohol Spectrum Disorders never disappear. Children and young people cannot ‘grow out of it’.
Adults carry the effects of FASD for the rest of their days – often developing diseases of older age in their 20s and 30s. The manifestations and difficulties may differ from person to person, and even be modified within the same individual.
Until three or four years ago, many of the physical problems were either unknown or the dots weren’t joined between FASD and these ailments, which confirm cause and effect. This is ironic because a physical indicator, i.e., specific facial irregularities (dysmorphologies) were what alerted health professionals to one part of this spectrum back in the 1970s.
Decades of extensive international research revealed that only 10% of people affected had these facial features. Yet 100% demonstrated brain differences (neurodiversity) that, while not visible, had an impact on their lives and life chances. This led to a shift in attention toward these behavioural, learning and cognitive difficulties for people living with FASD.
It took a group of young Canadians with FASD to challenge this new emphasis on the brain alone. These adolescents and adults with FASD were chatting one day. One of them said, “I have to go. I have an appointment with my doctor; I think I have another ear infection”. Three or four others around the table remarked that they too had experienced multiple ear infections. One noted it even seemed to be impairing her hearing; although some teachers blamed it on laziness and inattention. She and her peers knew this was not the case.
This got the group thinking about whether other people with FASD experienced similar physical problems. With the help of some experienced researchers, they put together an online survey asking a lot of questions about the physical health of people with FASD.
Imagine a group of young people, who many assumed would never amount to much, putting together such a unique survey! Unique in that it was designed by people with FASD for people with FASD. What a welcome example of what can happen when people with ‘lived experience’ of a neurodevelopment condition are taken seriously and encouraged to make the most of their talents. This is what respect, trust and a rights-based approach look like in practice.
To make it more useful, they compared prevalence rates of the problems reported by their group to the rates in the general population. The results were worrying. Rates of congenital heart defects in this group were 23 times higher than in the general population. So too, the likelihood of needing heart surgery as a child was 15 times higher.
Many illnesses create domino effects, with one ailment leading to another. A good example is their finding that chronic ear infections occurred 142 times more often among people having FASD. In turn, untreated hearing loss in the FASD population was 58 times higher than for the general public.
Another link in this chain is that of diminished/extreme pain responses. Although some people with FASD have an increased sensitivity to pain, it was more often true that those affected experienced a significantly lower response to pain. Ear infections can be painful…unless you don’t really feel much pain. How is a parent, educator or health professional supposed to know someone has an ear infection without the person self-reporting? If asked “Does your ear hurt?” and the honest response is “No”, how many adults would take further action?
But untreated ear infections – even if painless/non-symptomatic – can become chronic and cumulatively result in a degree of hearing loss. This links back to my earlier point. If a teacher, social worker, police officer, nurse or other adult is not knowledgeable about FASD, then chances are the child or young person will be falsely labelled as inattentive or lazy when they are actually experiencing physical hearing damage. If the young person is not complaining, then perhaps it will be assumed they just don’t want to be in that classroom or other setting.
For people with FASD (as well as their parents and carers) eating well can be a major concern. Imagine how it would feel to have an acute sense of smell but being required to sit down at the table and feeling overwhelmed by the smell of your brother’s fish fingers. People with FASD reported 55 times higher rates of an acute sense of smell.
There are other problems with food, such as the texture. I remember spending time with a little boy with FASD. He, his family and I were sitting around a table eating delicious peaches we’d bought in the Okanagan Valley. I noticed he was looking at his peach but not touching it. I asked his mum how I could help him. She said to peel the peach and cut it into small pieces. That approach didn’t succeed, as he still just looked at the peach and would not handle it. Finally, his mum quietly gave him a fork and then he began to eat and enjoy the fruit.
One of the other findings revealed that diseases normally associated with older age, such as arthritis, can also be found in young people with FASD. I spoke with the mother of a 22-year-old woman with FASD who experienced such pain in her joints that she sometimes required a wheelchair. The mother had taken her to the GP numerous times and had been told it couldn’t be arthritis. Why? Because “She is too young”. Not an incompetent GP; just someone who is not aware of the problems associated with prenatal alcohol exposure. There are also emerging reports of young adults (in their thirties) with FASD developing features of dementia.
Sleep problems are also very common in this group. Even at the end of the day, when everyone needs to rest, a person with FASD often doesn’t want to sleep. If it is a child who doesn’t want to sleep, then the parents aren’t going to get much sleep either. Together with memory problems, difficulty staying focussed, making decisions and controlling impulses, the picture of what it feels like to be (or have responsibility for) someone with FASD becomes clearer. The amazing ‘neurodiverse’ young people who designed and conducted this pioneering study called it a ‘whole body diagnosis’. While true for the individual, FASD is a ‘whole family diagnosis’.
In the next blog, the issue of FASD-related thinking and behavioural issues will be addressed. Please share your views and experiences through HPBL@qnis,org.uk or @HPBL_Scot.