09/25/2020
So important to see FASD when it really is there.
I N V I S I B L E
This disability is invisible in more than one way. Not only are there rarely external markers, but there is also no objective scientific test that identifies it. So there this population is, in the darkness. Not diagnosed. Not in the DSM. Without insurance reimbursement. Paying cash for therapies or going without. Being identified as ED before ID and never DD.
When I give trainings, if I'm not careful how I word things, people will say, "But I don't have any clients that have FASD. Why does this matter to me?" But you do. Statistically, if you work in any space with a DD present, it would be impossible to have a client that doesn't have the most common form of them. However, it's misdiagnosed or written down as "unidentified" because of the stigma.
What do we do about that? We break through that stigma. We say, shame has no place here! We say, our population is present. And after we say all that, we take action. We call our legislators and ask for FASD-focused legislation. We contact our government organizations and ask why FASD isn't one of the diagnoses they serve. We call our schools and offer to give them a training. We educate every doctor we ever come in contact with by saying things like, "As you know, this disability is so rarely diagnosed...I mean, 1% is not a lot!" We request meetings with our local Children's Hospital and ask for them to include us in grand rounds. We have to be a squeaky wheel.
Individuals on the spectrum don't deserve to live in the shadows. They don't deserve to have numbers that reflect a tiny subset of their peers. They don't deserve to be not recognized in the disability community when they make up a majority of it.
Let's be invisible no longer.