FASD and Fear

Yesterday I lost it with my son. We were at swimming and had put our stuff in our favourite extra big changing room but realised we’d left something in the shower. When we came back with it, another family were innocently going into the changing room thinking it was free. Then came the almost inevitable reaction from my boy, screaming and aggression and shouts of ‘shit girl’. Although I’m more used to this than I have been, the usual wash of shame worked in combination with the cumulative drip drip effect of fetal alcohol symptoms we’d experienced throughout the day. A day which earlier featured real pain and a cut under my eye from a book being thrown at me with force from across the room.

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I really shouted, popped his bag of crisps and threw them in the bin because the idea of just obligingly handing over snacks when he’d just behaved like this felt too galling. But then my son said something interesting. I railed with the usual and seemingly pointless ‘whys’. Why did you say that to the girl? etc. And then he told me. I can’t remember the exact words but he said he was scared or worried that the girl would take his things.

This reminded me yet again of something fundamental about fetal alcohol. Fear. And threat. There are so many areas of the brain that are affected by exposure to alcohol in the womb. We hear a lot about executive functioning deficits, the damage to the pre-frontal cortex at the front of the brain which results in reduced ability to plan, predict and to inhibit impulses. But for many with fetal alcohol it is the combination of this with the damage to the limbic region, the area of the brain responsible for the experience and expression of memory and emotion, that causes some of the most challenging symptoms. I am no neuroscientist so bare with me on this. But from lots of research I’ve discovered the vital role of this fear processing region that includes the hypothalmus, the brain stem and the amgydala.

The Greek word for almond, the amygdala are two almond shaped clusters of neurons often described as the emotional centre of the brain. The amygdala allows the brain to detect and respond to threats and pre-natal alcohol damage often causes disorder in its processing ability. Added to this is the damage to the inhibitory connection between the front and back of the brain. The pre-frontal cortex doesn’t do its job of sending messages to the limbic system to control negative emotion and the related aggressive behaviours.

Fear is primal. In the wild, it serves as a protective mechanism, allowing animals to survive by avoiding predators or other perceived threats. With my son it can be like he is a guard dog, on permanent alert and often stuck in a state of hypervigilant fright. And so much is threatening to him. Depending on how generally anxious and (dys)regulated he is, ending an activity, someone coming into the room, a sudden laugh, being told no, and certainly a family trying to enter a changing room with his stuff in it can all instantly fire him off. It can feel like the smallest things for him are like the equivalent of having a knife held to his throat. And his brain and central nervous system sends him immediately into that flight or fight zone where he is literally fighting for his survival. As in the wild the verbal and physical attacks are his protective response.

And normally he is not able to tell me why so it was great that he could tell me this time. But soon after he told me why, he then asked me why. ‘Why did I say shit to that girl?’ And that is also very revealing. Because mostly I don’t think he understands why he reacts like he does. His brain just does it. And then he is left confused and even more anxious. Which in turn can make him react with even more anger. Or sometimes shame. But I can never be reminded enough that it all comes from fear. And it is easier to feel empathy more than fear myself when I have that reminder.

Because fetal alcohol is not just about fear for the sufferer. The combination of factors which include the threat of physical and verbal attacks, fear of feeling shame in front of others, and fear of the future are a cocktail that can result in very similar threat responses from me. Although I have a better functioning brain that is more able to respond relatively to perceived threat and more able to inhibit an aggressive response, I am also capable of joining my son in the red zone. That sudden searing rage that overtakes and overpowers all else. And again, understanding the basis in fear helps.

For about nine years now I’ve been practicing mindfulness meditation. And lately I’ve been reading some amazing Buddhist books on fear and anger that are really helping me. They are getting me to see that, along with all the heartache and difficulty of my son having fetal alcohol, this experience can also be a teacher. My son’s displays of anger and rage are his protection mechanism for fear and threat. And so are mine. Anger is a way of trying to escape and protect myself from painful, fearful emotions that make me feel helpless. Faced with the threat of an unpredictable attack and all the other layers of fear and grief this brings, my own amygdala fires off, wanting to gain control, power and protection. And wanting to escape from danger.

But in her brilliant book When Things Fall Apart, Pema Chodron talks about ‘getting to know fear, becoming familiar with fear, looking it right in the eye.’ Rather than escaping from fear into other emotions and reactions, she advocates being present and relaxing with it. I find this very difficult to comprehend. As Pema points out, ‘no one ever tells us to stop running away from fear. We are very rarely told to move closer, to just be there, to become familiar with fear.’

And putting this into practice when my son starts hitting me over the head with a plastic fire engine is obviously a work in progress…However, I think the basic idea of getting to know and trying to stay with the emotions I’m feeling rather than trying to escape from them through anger is helpful. Because with his threat levels on such red alert, if I add any fuel to the fire, it just ignites and escalates into a horrible scene and adds more suffering for both of us. Rather than joining my boy in the rage, getting curious about our emotions could potentially help us both.

 

Getting truer on fetal alcohol

One of the things I am passionate about getting truer on is a disability that is so common, it probably effects at least 5% of the population but is so stigmatised hardly anyone has heard of it. My 5 year old son is one of the millions affected. His brain, central nervous system and body were damaged by being exposed to alcohol while he was developing in the womb. As a result he has a lifelong condition called fetal alcohol spectrum disorder or FASD.

Alcohol, or ethanol to give it its chemical name is a teratogen. This means it is a toxic poison for a fetus which crosses the placenta and the blood brain barrier with ease, and which the growing baby’s body is unable to process. It is more harmful to the fetus than smoking and other drugs and acts like a scattergun, damaging the brain, central nervous system and body. This can result in a wide spectrum of permanent, life long disabilities and birth defects. Research in The Lancet found that there are 428 conditions co-occuring with fetal alcohol. And my own research produced a 15 page long document of the unbelievable havoc that alcohol wreaks on the developing fetus.

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Too numerous to list in detail, some of the effects include physical damage throughout the body, changes to DNA, altered immune responses, altered hormone functioning, difficulties with executive functions like planning, problem solving and cause and effect, emotional dysregulation, speech and language issues,  attachment difficulties, raised anxiety, learning disabilities, cognitive issues, distractibility, memory problems, sensory processing disorders, behavioural disorders including demand avoidance, oppositional defiance and physical and verbal aggression, mental health problems, tic disorders, autistic like traits, attention deficits and hyper activity and developmental dysmaturity. To name but a few!

If people know about the harm caused by fetal alcohol they often assume it needs to be at very high levels, and have an image of it only being a problem for alcoholics. In fact, mounting research is increasingly showing that even low levels of alcohol in pregnancy can do damage.  One study found that just one unit of alcohol stops the fetus’ breathing and movement for up to two hours, another that neurotransmitter systems in the developing brain can be effected by exposure to low levels of alcohol. As few as two drinks a month can effect a baby's IQ and research also found that any amount of drinking in pregnancy can change the way the baby’s face forms. Despite such shocking evidence of widespread alterations, many continue to insist that some drinking whilst pregnant is fine and one study found that as many as 60 – 70% of mothers reported drinking some alcohol in pregnancy.

Those who know about harm from high levels may have heard of fetal alcohol syndrome or FAS. This is a diagnosis that depends a lot on physical features such as obvious facial differences and growth restriction. Facial differences are believed to be caused between the 10th and 20th week of gestation. and, whilst many of those with fetal alcohol effects will have very subtle facial features, only one in ten will present with obvious ones. Many are also average sized or even particularly tall or big for their age.

To account for the rest, as if things weren’t complicated enough! there are four other labels in addition to FAS that come under the collective umbrella of FASD. What I think many professionals and societies around the world have yet to fully comprehend is the full extent, range and spectrum of effects that exposure of a fetus to alcohol can cause. The effects vary so much because they depend on so many variable factors: age of the mother, birth order, genetics, nutrition and other drugs and smoking in pregnancy, stress levels in pregnancy, timing and dosage of the alcohol.

My son is an example of not fitting in the full FAS category. Our adoption social worker reassured us that he wasn’t diagnosed with fetal alcohol syndrome and was meeting all his milestones and developing normally. But, following increasing concern about his development, we did our own research, and sought a diagnosis.

The journey to diagnosis can be a long and frustrating one for many families fraught with misdiagnoses and professionals with little to no knowledge of the condition. Following a visit to a paediatrician who tried to insist we go down the autism route, we were lucky enough to see a geneticist who knew about the subtle effects of fetal alcohol and agreed our son has FASD.

Recognising and diagnosing this condition can be scary. And with the list of its potential effects, this isn’t surprising. But rather than steeping it in denial and stigma, grappling with the fear and truths of fetal alcohol is essential.

On a societal level, we need to have proper prevalence studies so we can finally start to get to grips with how common this condition is and how much it exists along a spectrum. We also need so much research, funding and understanding so that we can start to really prevent, treat and support those living with this life changing disability. As a society we could see vital improvements in mental and physical health, crime rates, school exclusions and family life. And we could save a LOT of money.

On a parental level understanding this condition means I get why my son has the symptoms he does. When faced with the most challenging behaviours and the searing emotions of rage, grief, shame and sadness that these bring up it is really hard to feel empathy.

But understanding that the behaviour is symptoms of brain and CNS damage means that more empathy is at least possible. It means we can manage on our own emotional regulation better and try and give our son the things that he needs. And it means we don’t spend our lives fighting the wrong fights. We can understand just how hard he is trying and how amazing he is. We can help him understand his condition and help him find strategies to deal with life. And crucially we all have the potential to suffer less if we can understand rather than blame the symptoms of fetal alcohol and those living with it.

 

why be truer?

As I get older I feel like time is speeding up and I worry about not making the most of it. I love Buddhist teachings about living in the here and now and how the present moment is all there is. But it’s not easy to live by and there is one thing in my life that sucks me right out of the moment: searching online. My main digital missions over the years have been houses and holidays. How much time have I wasted on Rightmove?! For a long time I was searching for a new house in Liverpool…then it was Manchester…then it was rental properties….At one point there was even a crazy scheme about holiday rentals in Bulgaria! And it doesn’t matter if there isn’t a real property to look for. Checking sold prices, or ogling mansions out of my price range. I can get sucked in for literally hours, getting increasingly adrenalized with that tight buzzy agitated feeling like I’m in some kind of vacuum packed vortex. Once gripped by the search it becomes harder to emerge, blinking into realisation of the time wasted.

The search for holidays has waned now that I have a challenging five year old. And maybe the fact that we have to go on virtually the same predictable holiday every time is a bonus! But at one point I could also while away the hours putting together packages of the cheapest possible flight and accommodation. Often for holidays that we had no intention of going on. A hilarious friend once admitted that she also did this and pointed out how she would never dream of doing it in a travel agent. She was, she said, “not that much of a nutter!”

Social media is inevitably another challenge. I’ve lost hours buried deep in the four year old wedding photos of an old school friend that I no longer see, feeling a bit stalkerish and guilty for judging her dress. I also scroll mindlessly through profiles feeling distant from close friends. Cut off and not quite valid enough to be part of their shiny looking life.

But even though I know intellectually that online searching may not be good for me, I keep returning. Why is it so addictive and appealing? And is this website just adding to the issue?

We now know that social media’s design features like notifications at random and pull to refresh are specifically designed to give us the neuro chemical buzz that colonises our attention and keeps us hooked. Neuro marketing is being used to target our brains. And it’s this way that marketing works with our brains, behavour and emotions that is so fascinating.

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Shame and vulnerability researcher Brene Brown’s work on emotions is so spot on. Through her insights I’ve realised how much my activity online is about trying to avoid feelings of shame and vulnerability and how marketing exploits this. Shame is “the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging.”  If I’m feeling uncomfortable, exposed, inadequate, uncertain, alone, anxious, fearful, hurt, bored, dissatisfied, I enter the (anti) social glossy world and it offers promise of escape. And what’s this escape into? The quest for perfection.

Brene defines perfection as about trying to earn approval and acceptance. And that defines digital. Managing impressions is what marketing is about. So we enter a vicious cycle of being persuaded through marketing practices to seek perfection, and using marketing practices of impression management to do that seeking. When I search for the perfect property or view smiling celebrity families there is a feeling of potential that rightness can be reached. There is a hopeful and exciting momentum to moving on, moving up and taking control. If only I could do it all just right. If I could just make more money, ace that diet or generally transform myself into something I’m not. I would know people approved of me then.

Likes, mentions and follows, are also well designed to give me the buzz of validation. One step closer to perfect! And despite having a website, my hunt for approval is tame. One man with unbelievable amounts of cosmetic surgery has 50,000 followers on Instagram and is addicted to selfies, taking 200 a day. And in China over 325 million people use an app to live stream themselves. We perform and please, pretend and perfect. And when we do this we keep our truer selves and experiences under wraps and airbrushed out of our image. But according to Brene, it is this secrecy that actually works as a petri dish for shame.

So what could feel better? The antidote to shame is empathy. How would it be if we were less judgmental and more honest about our truer lives and vulnerabilities? It’s uncomfortable to feel uncertain and emotionally exposed, to acknowledge feeling unworthy. It can be difficult to let go of trying to control our image. We want to be able to control what others think of us so we can feel good enough. And it’s not always easy to slow down and be with ourselves and our mixed and uncomfortable feelings. But what if we took that risk more?

I went to see Viv Albertine of punk band the Splits in conversation recently and she was direct and raw and funny. And she talked about how she wanted to speak honestly about the messy realities of her experiences, struggles and emotions in order that others may feel less alone. Just hearing that was a refreshing relief.

It is my intention that the films, events and words on this website will help people connect through empathy and understanding. It will be a forum for sharing shame and vulnerabilities with less comparison and judgment and for greater openness about hidden and stigmatised experiences. And it will bring an ahhh of relief through allowing us to let go of the pressures of perfection. So we can laugh in recognition and realise that we are not alone. Let’s join Viv in closing the gap. Let’s get truer!