In this month of autism acceptance and autism belonging, I want to point to a very concerning issue.
When your disability is TOO VISIBLE, you are made INVISIBLE by society, warehoused somewhere where you can be out of sight and out of mind of society.
This is the plight of many adult autistic peer friends that I know. The adult autism world of inclusion and belonging, only wants the good patients. Special education had never wanted "behavior kids - the ones with meltdowns, aggression and SIBs", so will just house them in some classroom or NPS, ready to spit them out at age 22 at which point their legal obligation ends under IDEA.
I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. There also seems to be confusion that such behaviors are seen only to those with low IQ or lesser speaking ability or whether you have access to communication. I know an equal number of autistics, considered "moderate" or "high" in childhood who reach exactly the same place by early/late teen-hood; tossed between psychiatric facilities or stuck at home with their families. Most are heavily medicated with pharma cocktails that don't seem to work at all for autistic physiology.
The adult autism world does not want these "behavior autistics" either. Adult Day Programs (ironically meant for autistics) don't want them, even Group Homes for autistics want only the 'well-behaved' and easily manageable ones.
Let me give you an example of 2 peers that I know - one sits in the corner all day and is regarded as a model student by that Adult Day Program. The other peer is at home with his aging parents as no day program will take him - "too much behaviors." And he is just one of the many dozens I personally know and grew up with in this scenario.
Behavior therapy agencies will tell the family that that autistic is "not a good fit" for their program. If behavior therapy agencies don't want to help with behavior, then why is the word "behavior" in their name at all. Autism professionals too will find PC alternatives that essentially say "not a good fit" for the autism they don't want to work with.
Autism Clinics at major hospitals too, end at age 18. Did the autism and behaviors magic away in adulthood.
Essentially the entire autism professional space is rending such autistics even more invisible.
And doing such a fantastic job of it that the other autistics (invisible disabilities/neurodiverse) don't know or believe our existence.
In a recent twitter post an adult autistic pointed to lack of numbers of such adults as evidence that they don't exist - and since she herself had started to talk at only at age 3 after therapy; it must mean that ALL autistics must have regained speaking ability and inclusion sometime in childhood.
Are you really surprised at this. When you are out of sight is out of mind of society; it also means nothing need be done to help. And it merits some societal attention only when it makes it to the news in a dramatic fashion such as in the article below which will be lost in the in the quicksand of short public memory.
And did I mention, it is incredibly hard to even find support staff as there are enough "easier" adult-autistics clients job market. So staff don't want these autistics either; everyone wants the easy button.
There is only waitlists or rejection at every turn.
Where are the services and supports for these adult autistics? What is the long term outcome? What is the plan?
It does not have to be like this. I truly believe that there is a biological basis to all this SIB, aggression and other behaviors. Where is the biomedical research that looks for answers as to what's going on at a physiological level so that we can work on targeted solutions. Given that traditional pharma is not working, when are we going to get targeted interventions and pharma that actually work with autistic physiology?
How can there be inclusion and belonging for these autistics unless we find solutions to some prior steps first?
Why is this not seen as an urgent need in autism research?
And to the growing numbers of Neurodiverse community out there, the action I request of you is - Include everyone, including the marginalized autistics. Help find solutions to these issues so that every autistic can be part of the dream of Inclusion and Belonging.
