Far from the media spotlight, in Facebook groups and living rooms around the world, people with Foetal Alcohol Spectrum Disorders and those who support them are debating a news report that speculated as to whether or not the Florida shooter might have undiagnosed FASD. A major news outlet used this raw moment to highlight the too-often overlooked effects of prenatal exposure to alcohol. Better understanding FASD is an important topic. Earlier this month a US study showed that more people have brain-based disabilities due to FASD than have autism. Days ago an Australian study showed that people with FASD are a disproportionate segment of the prison population.
But I have never subscribed to the idea that ‘all media is good media.’ Some articles play straight into the anti-disability prejudice and stigma that exists. Our colleagues in the autism community know this well and are feeling this backlash once again, since reports are also circulating that the shooter had an autism diagnosis. Linking any condition with violent acts in this way ignores society’s failures which are by far the more salient issue in such cases. It’s easier to identify the ‘other’ – someone not like us – as being ‘flawed’ and therefore prone to such heinous acts. Whatever condition this shooter may or may not have had is not the reason why he did what he did.
An adult with FASD summed up why it is harmful to link a condition so quickly to such an emotive news event: “I don’t want this to be the general public’s mental association to FASD. ‘Oh, you have FASD? Uh-wait; isn’t that what they said that school shooter in Florida had?’ YES because from now on NOT ONLY will I be seen as ‘stupid’ or ‘retarded’ now I get to be seen as having the potential to kill and EVERYTIME I get upset about ANYTHING I will be under heavy scrutiny because ‘They said this this and this about FASD.’ I don’t understand HOW this is REMOTELY a good thing! It makes me afraid to be open about it because I don’t want to frighten people; what people fear-they destroy.”
Myles Himmelreich wrote, “This is leading to a misunderstanding, judgement and incorrect information about FASD. I am a motivational speaker, FASD consultant and FASD trainer and as such I shake my head and say ‘we still have work ahead of us’ this shows a blanket statement and will continue to misguide people to believe individuals with FASD will automatically be violent, NOT TRUE. Oh and I’m also an individual with FASD and as such I say ‘please see me, know me, support me and join me in truly understand the struggles but also the success I face every day.’”
All around the world people with FASD live lives of courage and accomplish amazing things. There are many examples of FASD role models. Sadly, the media rarely takes the time to acknowledge the good work they and others like them are doing. Instead it wakes up when it can sensationalise a story. This comes at great cost.
The US National Organisation on Fetal Alcohol Syndrome issued a statement that said in part: “We see no good reason for FASD to be discussed at all in the context of this shooting. There is no evidence of any connection between FASD and violent behavior. In fact, individuals living with FASD are disproportionally likely to be victims of violent crime, not perpetrators.”
The Minnesota Organisation on Fetal Alcohol Syndrome also responded: “Many people with an FASD and their families find it upsetting, stigmatizing, and dehumanizing to read media stories linking FASD and violence. It’s worth noting that countries with similar, and even higher rates, of FASD do not have the same issues with mass shootings that we have in the United States. This strongly suggests FASD is not the issue.”
People with FASD can have more than 400 related conditions due to damage done to developing systems while in utero and secondary issues can kick in if their primary needs are unmet. It’s a complicated mix. While FASD does not equal violence, we also should not ignore the fact that some with FASD need help with channelling aggressive and impulsive behaviours that can sometimes become quite consuming.
Savanna Pietrantonio, an adult with FASD who co-chairs one of the longest-serving support groups in Canada and who helps run an international FASD online support group Flying With Broken Wings, thinks it’s important that we use this moment for developing a deeper understanding of FASD and the powerful impact that proper supports can have on someone’s life. She said, “We’ve been the less and the least and the left out for too long. It’s too bad not everyone and even most people don’t have the all the information from which to make this event into a meaningful conversation. We can overcome and cope with the trauma involved with having brain damage due to FASD when we have support. It makes all the difference with acceptance and unconditional love and someone who isn’t afraid of our brain or mistakes!”
She and others in Ontario are pushing Bill 191 to amend the Education Act to “promote awareness and understanding” of FASD and “best practices” to meet their needs to reinforce the tremendous responsibility schools have to provide awareness, understanding and support to meet these needs, rather than punishing, suspending or excluding troubled students. As Mark Courtepatte, co-chair of the Hamilton support group said, “For people with neurological disabilities, their actions are communication. Whatever his condition may be, the Florida shooter’s actions communicated that he was overwhelmed, his brain was not able to comprehend or deal with his environment of continuous non-support and not being understood. He ‘snapped.’” He noted that discussion about the culpability of Cruz’s school is missing from the media.
Raewyn Mutch, one of the researchers from the Australian study, is quoted as saying, “The longer you leave someone unrecognised with a neurocognitive impairment, the more frequently they experience negative repercussions from not having their impairment recognised…They experience more often punitive responses to their behaviours rather than reflective responses based on the fact that you understand they have a cognitive brain impairment.” In other words, it matters greatly that we recognise and address the needs of people with FASD.
FASD is as prevalent here in the UK as it is in other countries, if not more so due to having one of the highest rates of drinking alcohol during pregnancy. We have seen recent UK reports about many adoptive families experiencing child-on-parent violence. These stats may include undiagnosed cases of FASD. (In the aforementioned US study only 2 of the 222 cases of FASD found were previously diagnosed.)
The good news is research shows that using known strategies to support those with FASD can create brighter futures. This positive approach is the basis of the FASD UK Alliance which runs an online support group for more than 1,600 families. NOFAS-UK promotes FASD Wellbeing by working with those with FASD, families, policy makers and practitioners.
The bad news is there are parts of the UK where it is not possible to get a diagnosis for those on the FASD spectrum, where people are denied support by the NHS and schools despite the fact they have brain damage. If the person doesn’t have the dignity of a diagnosis, that all-important insight into the ‘why-s’ of their struggles, tools and strategies are not put in place: the support, the assessments, the Education and Health Care Plans they deserve, the benefits that are increasingly denied to those who need them most.
Here in the UK adults with FASD are seeking to create change. As Lee Harvey-Heath, Chair of the FASD Advisory Committee said on the launch of the committee last year, “It is vital that those affected by FASD have a voice. Individuals with FASD need to be heard in order to gain the support that they so desperately need and deserve. My own undiagnosed FASD took me to a place that many neurotypical adults don’t come back from. That is what I want to prevent happening to anyone else affected by prenatal exposure to alcohol.”
How to prevent this from happening is the task for us all. It takes political will, prioritising a vulnerable and too-often overlooked segment of our society, and compassion not sensationalism. We must not stigmatise the very same people we are trying to help. We have to hear their voices too. We have to seek change together.
This is personal. I am American, though I have lived in the UK for nearly 12 years. I am mum to a teen with FASD. The reason why I would not move back to the USA has nothing to do with the fact that there are people there with FASD, just as I would not leave England because there are people here who have FASD. I would not move our family back to the USA because of the guns, the increasingly militarised and polarised society, the failing health system, the lack of safety nets for the vulnerable, the fact the sitting US president openly mocked disabled people. I most certainly do not fear people with FASD, nor should you. Fear – if you must – prejudice, stigma, and inaction. Those are the killers. Fear another generation bearing the weight of this hidden epidemic because our political leaders didn’t think we cared enough to make it a priority.