“Our families must be heard, our loved ones deserve appropriate resources and services. The intentional blocking/censorship of the severe side of the spectrum must come to a end.”
The author with his family. It’s time for the families that have had the nightmare experiences of severe autism to be leading the conversation about the future of our disabled loved ones, he says.
By Vance Goforth
I’ve been actively advocating for changes regarding issues related to severe autism and severe behavioral disorders for over two years now. This process started after our son Joshua finally received treatment for severe autism and behavioral disorders that had been in crisis levels for years.
I experienced the devastating effects that a broken system had on my son and family and I’ve been screaming from the rooftops ever since. I have seen resistance and outright anger from those who would rather my viewpoint be censored than be addressed. This goes beyond disturbing for me and I find it outright ludicrous that those dealing with severe autism/related diagnoses have been totally dismissed by autism advocates and disability organizations that claim to represent our families.
It was hard enough for us to share our story publicly, but when a prominent disability organization heard about our son and talked to me about solutions, their response was “good luck, several other parents have said the very things you have and haven’t been successful in getting those changes.” Disheartening doesn’t even describe what I felt when I heard those words and also the fact that they weren’t even in the least bit interested in helping by speaking out about what my family had experienced.
I refuse to be talked over and talked down to anymore. It’s time to take the conversation back.
Our families must be heard, our loved ones deserve to be treated with respect and provided with appropriate resources and services. The intentional blocking/censorship of the severe side of the spectrum must come to a end.
I’m very tired of different forms of media asking about our story and saying they will cover the story and then when they find out that it‘s not one of those happy feel-good autism stories, I never hear from them again. This isn’t a shiny-gift autism that gets covered in the news so often, this is a gut-wrenching hard autism that is no cause for celebration for my family or the families that truly understand what I’m talking about. It’s devastating.
Families cannot get resources and services in the form of respite, therapies, in-home care, medication management, behavioral treatments, inpatient treatment (both acute and long term treatment). I know some states are better than others in providing services; but still, there is a widespread lack of needed support for families facing issues related to severe autism and other ID/DD disabilities.
We’re seeing respite resources having their budgets cut, even Medicaid waiver programs are being cut back or delayed like in my state. This is not the right direction, especially when considering that the autism rate continues to rise at an alarming rate.
We are one of thousands of families that can attest to the fact that treatment facilities are overwhelmed and the waitlists are grueling for those in need of immediate help. I’ve sent many emails and testified before state legislators about the need for more treatment centers. Here is the response that truly perplexed me and I’ve heard it more than once. “The state just closed all of the institutions, they will not be willing to explore the idea of adding new treatment facilities.”
What, what????? How is providing treatment facilities being equated with an institution? I don’t know the answer to this but it’s happening. We are already so behind the curve with the increased autism rates, it’s scary and very few are paying attention to the distress calls from families.
I personally know one family that is 3,400 miles from their child because of the shortage of treatment locations. How would you feel if this was your family? The pain and the stress these families face is indescribable. They feel hopeless and totally invisible in a system of advocates and organizations that considers it forbidden to discuss the hard issues of severe autism. Higher functioning advocates champion the closure of anything that is related to or even falsely described as an institution, while refusing to discuss multiple and overwhelming issues created by not providing suitable alternatives when these closures happen.
It’s time for the ones that have had the nightmare experiences of severe autism to be leading the conversations. We need more families to share the systemic inadequacies they face and we definitely need more organizations and legislators to have an open ear to the tsunami of challenges that are hitting families right now and getting worse with time.
Vance Goforth is the father of son with severe autism. He and his family live in Tennessee.
Like the Voice for Joshua Facebook page here: https://www.facebook.com/changeforjosh
Join the Voice for Joshua Facebook support group here
Read more from Vance here:
Walking on Eggshells, a Severe Autism Perspective
The Crisis Call No One Is Willing to Hear
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.