Lack of Services for Fetal Alcohol Disorders is Not Just a Crisis, it’s an Injustice

As a behavior consultant for children, teenagers, and adults with Fetal Alcohol Spectrum Disorders (FASDs), I consult with dozens of families and professionals per year and come into contact with hundreds more through trainings. These families live all over the world, and if there is one commonality between them all, it’s this: they are all desperate for services and receive virtually no support from any system. That is an injustice.

How many people does this affect? A recent study conservatively estimated that FASD prevalence among US children is 5%. [1] Conservatively. That’s 1 in 20 children whose brains (and bodies) have been impacted in some way by exposure to alcohol in the womb. Autism is currently estimated to be 1 in 59 children, or just a little over 1.5% of the population. [2]

So 5% of the population (and their families) are living with the consequences of prenatal exposure to alcohol. These “consequences” typically start showing themselves through learning difficulties and challenging behaviors. Note: people with FASDs often have no outward sign of a disability — you do not have to have “facial features” to have an FASD. In fact, many people with FASDs have normal IQs and can speak well. All of these strengths only contribute to their invisible disability, making finding services even more difficult because they don’t “seem” to need as much support. That is an injustice.

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Despite certain strengths, people with FASDs almost-always struggle with processing information quickly, including what is being said verbally. They also typically struggle in many— if not all — areas of executive functioning: attention, impulse control, working memory, abstract thought, planning, adjusting, transitioning, and more.

And so we have a group of people — 5% of the population conservatively — who have an invisible disability, can often speak well, and yet who struggle with critical skills needed for literally every waking moment of the day. And when someone is continually demanded (by parents, by teachers, by friends, by society) to use skills that they don’t have, they begin to respond to that pressure through challenging behaviors, or find various ways to cope.

Many parents (biological or adoptive) do not know their child has an FASD, or they do not know how FASD impacts the brain, and so they do the usual: punish, reward, yell, spank, whatever. None of these work, because none of these address the underlying issue of cognitive skill development. What traditional responses are able to do, however, is to cause stress and, eventually, crisis.

And, sadly, we come to the point of this article: it’s not just parents and caregivers of people with FASDs who are unequipped on what works with FASDs. There is no single system equipped to support the cognitive or behavioral needs of a child or adult with an FASD.

Not a single system for 5% of the population. That is an injustice.

By “system”, I mean major, overall systems like schools, mental health, developmental disability systems, law enforcement, and the justice system (just to name a few). And because we are talking about 5% of the population with varying IQ levels and abilities, it is clear that people with FASDs will be interacting in virtually every single possible system there is!

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Traditional responses to challenging behaviors don’t work for children with FASDs, because their behaviors are the result of struggling cognitive skills, not intentional misbehavior.

Schools are not educated about FASDs, from teachers and student aides to school principles and administrators. Special education programs are not usually equipped to deal with the behavioral issues or the academic strengths of the student: it is hard even for professionals to adequately support a person with an invisible disability. Despite the clear connection between lack of cognitive skills and challenging behaviors, children and teenagers with FASDs are frequently punished. Punished for not having a tool in their toolbox. That is an injustice.

While FASDs are developmental disabilities, mental health programs are needed by most people with FASDs to provide support for mental health issues such as anxiety, depression, PTSD, and ADHD. In fact, mental health programs are often the first system a person with an FASD may encounter because they may not have significant learning disabilities or a low IQ, which is typically required by developmental disability systems to receive services. The children are then given therapy and services that are not catered to their specific cognitive skill deficits, quite simply because mental health professionals are generally untrained in developmental disabilities, and the strategies needed are often unintuitive. Additionally, few FASD-specific therapies have been developed and are rarely utilized by practitioners in the field. So children with FASDs are given whatever program the therapist was trained in.

The child often then goes from therapist to therapist, getting bored or escalated at each appointment. Whereas I have the tools in my brain to sit with my therapist for an hour and have an ongoing, verbal conversation with them, the fact is children, teenagers, and most adults with FASDs don’t get anything out of that same scenario. Then, when behaviors don’t change, they are blamed for not “trying hard enough” or “buying in” or “not wanting to change” their behaviors.

Of course, challenging behaviors don’t end with desperate parents, ineffective therapy, and expulsions from schools. They lead to interactions with still more systems who don’t know the first thing about the population, much less how to support them. Do I need to go into detail about how a typical interaction with a law enforcement officer does not work with the cognitive skills of about 5% of the population? Or how long, complicated, and drawn-out court proceedings — typically resulting in sentences and consequences that make no sense given the underlying reasons for the behaviors — don’t work for a person with an FASD?

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Punishing people for not having cognitive skills a situation demands makes no sense and makes things worse.

Continual lack of appropriate services and supports is what creates stress, and stress creates trauma. We see this clearly in the fact that the average life expectancy of a person with Fetal Alcohol Syndrome (FAS) is 34 years-old, with the number one cause of death being suicide.[3] This has nothing to do with their disability — it has to do with stress and trauma, typically imposed by outside forces, by society. And these stressors come from continual misunderstanding, lack of appropriate services, and the continual thought that the person is not trying hard enough to improve. [Edit: since writing this article, I have learned more information about the flaws in the study I cited above, and I would not include it if I were to write this article again. I am leaving it in with this note so as to leave the article as originally written.]

And that’s the thing that frustrates me the most. You see, I firmly believe that people with FASDs (and other developmental disabilities) can do better. They can learn, and their behaviors, relationships, and quality of life can all improve. But these things cannot happen when the systems meant to provide support are the ones causing the stress that leads lack of success. While campaigns to educate women about the dangers of drinking while pregnant are very important, we need more than that. Much more than that. We need resources for the millions of children and adults who are expected to not only overcome their own individual struggles, but to also somehow navigate the systems which are continually blocking them from succeeding, directly or indirectly.

The injustice is not just about living in a world with no support, it’s about the fact that, when we don’t support people with FASDs, we miss out on their contributions and the ways they can enrich our lives. People with FASDs need different approaches, and it is up to those of us supporting them to learn and implement those approaches in our interactions and in our own, flawed systems. We can’t afford not to: 5% of the population is counting on us.

Nate Sheets is an international Fetal Alcohol Spectrum Disorders (FASD) behavior consultant, trainer, and advocate.

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