Four Reasons to Fight Stigma and Support Families
I write a lot about stigma, and as I prepared for this post, I realized that I should step back to define the term. Or, to be more accurate, to let Webster define it:
stig.ma (noun): a set of negative and often unfair beliefs that a society or group of people have about something.
Given that definition, it's obvious why stigma hurts kids and families, right? When it comes to FASD (Fetal Alcohol Syndrome Disorders), the stigma is a set of negative and often unfair beliefs that a society or group of people have about FASD... and that stigma is dangerous for families and children.
- Because children need accurate diagnoses, and the stigma about FASD can hinder that.
- Because accurate diagnoses can lead to purposeful interventions, but the interventions can't be identified and applied if FASD is a secret due to stigma.
- Because families can only seek and receive support for their needs if they can trust that help will be offered instead of stigma.
- Because everyone can seek to build on the strengths of an individual with FASD if the family isn't isolated due to stigma.
Let me explain a little more about each of those, drawing from a recent webinar led by Dr. Christopher Boys of the University of Minnesota Medical School. I attended this third webinar as part of sponsored campaign with MOFAS and Brandfluential, and I have to admit the topic for this one was the most exciting of the three: Family Matters: Strategies for Successful Outcomes.
While I wrote about the basics of FASD here and the benefit of an accurate diagnosis here, my passion for this topic is simple: one of my children was exposed to significant amount of alcohol while still in the womb. For me, FASD isn't a theoretical concept or medical diagnosis; it's a family reality. Just as the webinar's title states, family matters.
...because children need accurate diagnoses, and the stigma about FASD can hinder that.
I've written before about the need for accurate diagnoses, so I won't spend much time on that in this post. Let's talk about how stigma can hinder that. If parents are worried about FASD stigma, then they might not share about prenatal alcohol use. If doctors buy into this stigma, they might not ask the questions they should ask about alcohol and behavior and support, all of which could lead to an accurate diagnosis.
...because accurate diagnoses can lead to purposeful interventions, but the interventions can't be identified and applied if FASD is a secret due to stigma.
If a mom has already seen the negative affects of stigma around FASD, then she might be more hesitant to reach out for help, for fear that she or her child might be further stigmatized because of challenging behaviors... not knowing that the behaviors, like impulsivity, poor judgment, sensory integration difficulties, dysregulation of mood and behavior, and trouble following directions, can all be caused by FASD.
And what's even better? When parents and professionals know that FASD is the root of some of those behaviors, they can use research-proven interventions to improve outcomes for everyone involved! Success is possible with FASD, but stigma can prevent those needed victories.
...because families can only seek and receive support for their needs if they can trust that help will be offered instead of stigma.
Can you imagine having a child with the flu and being scared to seek help because you don't know if the doctor or if your friends might blame you or dismiss your concerns? That's how many families feel when their children have FASD instead of the flu. The FASD triad - that is, the three common behavioral/functional characteristics for people affected by FASD - is that the individual tends to (1) be impulsive, (2) misinterpret the intentions of others, (3) and fail to learn from feedback. Consider the assumptions that others might make about a kid who fits that description. Add to that: limitations on working memory which make multi-step instructions hard to follow, difficulties with executive functioning that make it hard to figure out the first step in a task, potential for aggressive behavior, and a tendency to escalate undesired behaviors without immediate targeted interventions.
Once again, there is hope. Parents can build on a child's strengths and work with others to implement strategies to address weaknesses. The PowerPoint from the MOFAS webinar is a fantastic starting place for specific tips.
...because everyone can seek to build on the strengths of an individual with FASD if the family isn't isolated due to stigma.
Parents can't do it all on their own. Parenting a child with FASD can be exhausting, feel frustrating, and even - at times - seem hopeless. When stigma leads to isolation, the task becomes almost insurmountable. So friends, family, teachers, medical professionals, churches, and so on... step up. Come alongside these families instead of thinking someone else will.
And as you step up, stigma will begin to shatter.
And that is truly awesome.