Stigma

By @FASD_Mum

On 2 April World Autism Awareness Day was celebrated in ways big and small around the world.  It made me pleased to see the ‘mainstream’ rally behind this condition.  President Obama issued a proclamation that said in part, “Every person deserves the chance to reach for their highest hopes and fulfill their greatest potential…Today, and every day, let us reach for a future in which no person living on the autism spectrum is limited by anything but the size of their dreams ‑‑ one in which all people have the opportunity to live a life filled with a sense of identity, purpose, and self-determination.”   There were walks/runs/bake sales/educational ad campaigns. Mainstream schools wore blue for fellow students with autism.  In the UK a new tv series, The A Word, is featuring a family as it struggles to come to terms with the full impact of their son’s autism diagnosis.  It is fantastic that a wider group of people are learning about the condition, that kids are being included in schools and other opportunities.  It’s overdue to finally see those with autism recognized for their many talents and very encouraging to see emphasis put on the need for more research and deeper understanding of this still confusing condition.

But here is a thought:  FASD is believed to be as prevalent as autism spectrum disorders.  Now ask yourself, how many bake sales and walks/runs have you seen for Fetal Alcohol Spectrum Disorders?  How many kids with FASD do you know about in your child’s school?  I am willing to bet, none. Zero.  Zilch.  And yet, statistically, they are there.  In fact, many kids with FASD are misdiagnosed with autism, as our son was at first.

FASD is a spectrum of conditions that includes brain damage and a range of other physical disabilities, a condition that we know is underdiagnosed and widespread – a spectrum affecting as many as 2% of our children, and yet we as a society, as a community, ignore it?  Why?

Stigma.

This isn’t a condition with unknown origins. There is one cause for FASD.  And it hits us hard, right in the gut of our pub culture.

At some time a woman (who may or may not have known she was pregnant) drank alcohol (either because she wanted to or because she couldn’t stop herself) and that alcohol crossed the placenta and burned its way into her baby’s future.  With this condition the cause and effect are perfectly clear.  What is not understood is why sometimes the damage can occur with very small amounts and why in other instances even with a great deal of exposure the damage is not there.  People worry about the brain damage caused by the Zika virus, and accept suggested preventative steps, but no one wants to talk about alcohol and pregnancy – this 100% preventable major cause of brain damage.

As a result of not wanting to address the irrefutable, black and white, scientifically proven cause and effect, society ignores the need to help the innocent children, young adults, and adults with FASD.  To address the issue, we have to reexamine our own role in its root causes.  This is deeply uncomfortable for a society that prides itself on freedom of choice.

Every conversation in the UK about why more is not done to address FASD starts with, “We don’t have the statistics.” Every time parents seek help from professionals, from schools, from local governments, we are told, “We don’t know about FASD.”  “We don’t have services in place for FASD.”  “We weren’t trained in FASD.”  “We don’t have the funding.”

Well, why not?

Recently the US Centers for Disease Control took a leadership role and advised women of child bearing age to use birth control if they are having sex and drinking, and if they are not using birth control to avoid alcohol.  This common sense advice created an international media firestorm (fueled in part by their own ill-advised graphic designs).  FASD is only ever reported in the news when something like this flares up.  Suddenly any of us who try to support commonsense advice are accused of trying to patronize women, to take away their choices, to view them only in terms of their wombs.

Or the media responds when a really tragic case comes to the fore – an adult with FASD who is unable to read, a young adult with FASD who tries to murder his dad in a rage.  These tragic examples do exist, and are very sadly real.  But not everyone with FASD is affected that severely.

Most people have no idea that 2% of the population is potentially somewhere on the spectrum.  Most people don’t know that FASD can take many different forms, that quite often there is overlap with other conditions – that child you think has ADHD or autism may in fact have been affected by alcohol in utero.  Or maybe that kid who is always ‘trouble’ or that relative who is ‘irresponsible’ is walking through life with a hidden disability.  Without wider coverage of the range of the spectrum, people don’t see the problem at the less extreme ends.

The stigma and shame is hypocritical of a society that seeks to suppress the science and rejects the medical advice from the UK Chief Medical Officer, the US CDC and the American Academy of Pediatrics and other national and international expert bodies.  We can’t simultaneously refuse the advice and blame the women.  We can’t give half-assed ‘guidance’ and sneer at those women who admit to having had alcohol in pregnancy.  Those birth mothers who come forward are among the most determined and courageous women I know.  They stare down the stigma in their efforts to seek help for their kids.

The fact of the matter is, this issue crosses social boundaries.  Young professional women are among the growing population of binge-drinkers.  Whatever people think they know about women who have kids with FASD needs to be tossed out the window.  It can happen at that table where you, me or any of us are laughing, joking, flirting as it can in a darkened room where an abused woman is drinking to mask the pain.  It is never intentional.  But our societal ignorance is.

And let’s clear up something else.  It’s never the kids’ fault: not if they are born prematurely, not as they wrestle a little too hard at play group because their sensory perceptions are messed up, not as they push some kid over on the playground when they are overstimulated, not as they steal candy from the shop because they wanted to please a friend, not as they skip school to self medicate with drugs or alcohol, not as they get into a public altercation with a police officer as a young adult because they became so confused they lashed out, and certainly not when they confess to a crime they didn’t do because their brain filled in what they thought the interrogators wanted to hear.  FASD is a lifelong disability.  We need to talk openly and honestly about it.  Just because the kids grow up, doesn’t make their brains any less affected.  I am really tired of a society that cuddles kids with disabilities when they are toddlers but locks them in jail when they are in their 20s.

Yes.  Kids born with FASD grow up.  And if they do not receive proper intervention at a young age from parents and carers and schools and doctors and therapists and friends and family members who understand the underlying brain issues, they often grow up to have secondary issues that are devastating.  They often grow up to have addictions, trouble with the law, and lives filled with crisis.  Desperate lives, attempts at self-harm. Suicide.  Tragedy after tragedy can possibly be avoided with earlier intervention.  We are told there is no money, and yet no one says there’s not enough money when they slam the expensive prison door on a young adult who did not need to be there, a kid who was so medically misunderstood all his or her young life that he or she ended up in prison because we as a society couldn’t face the uncomfortable facts of FASD.

The good news is that across the UK, and around the world, there are pockets of parents and carers and educators and medical and other experts who are seeking to chip away at the stigma (please see the ‘resources’ section of this blog for some links).  There are courageous people like an inspiring birth mum we met who wiped away her tears, swallowed her pain, and told us about her daughter’s deeply tragic attempts at suicide and her subsequent successes at overcoming that dark period, marking 1-1/2 years of sobriety and pursuing positive life choices.  The mum had no idea that her daughter had been affected by her moderate drinking while pregnant until she learned more about FASD a few years ago. As a group we shared best practices, empathy, and hope.  Through this sharing of experiences, maybe some other kids may be able to avoid the worst of the valleys.  Through these sorts of informal support networks we amateurs are organically responding to a need that should really be addressed on day one of an FASD diagnosis by those experts who know how to support our families.

FASD – I will say it again in hopes the vast import of this statement sinks in – FASD is believed to be as prevalent as autism in our society.  By saying this, I don’t mean for a second that less should be done for those with autism, on the contrary, I believe more should be done for them.  And much, much, much more needs to be done for those with FASD.  Let’s toss out the stigma.  Let’s talk openly about it.  Let’s let our kids name their condition without shame so they can understand themselves and help explain their needs to the society around them.

It will take you, me, teachers, doctors, reporters, policemen, lawyers, judges, store clerks, bartenders, and most importantly of all the women staring into those wine glasses and pints and the men sitting with them, to get on board, to get informed.  We need to properly screen for FASD.  We need to lose the stigma, get the funding, and push our elected officials and the medical experts to provide the protocols and services needed to support the innocent and overlooked population of people who are on the fetal alcohol spectrum.  We all want our kids to have good lives.  A caring society does not ignore its most vulnerable.

My son did not do this to himself.   He is as innocent as a child who might have been run over by a drunk driver.  Don’t deny him his future.

There is a day some groups have designated as FASD Awareness Day – it’s 9 September – the 9th day of the 9th month, chosen to remind people to stay alcohol free for the 9 months of pregnancy.  And there are groups that promote positive awareness campaigns, like the Red Shoes Rock campaign.  But we need a wider platform for our cause.  And we need world leaders to issue proclamations for our community too.  Leaders speaking out on this issue can have great power to change lives, since FASD is one form of brain damage that is 100% preventable.  Our kids must be able to own their diagnosis, without stigma, so they can walk through this world with a sense of identity and purpose, to borrow President Obama’s words.