Providing Adult Services
November 19th, 2007I know a lot of other adults have spoken about the sad lack of reasonable services for adult autistics. Usually we’re talking about things like help with housekeeping or paperwork (although, as an aside, we don’t always articulate what we want well – and if we fail to do that, we’ll NEVER get what we want – we seem to do a much better job talking about what we don’t want than what we do want; I can’t even think of one site that explains, in an easily understood way, what positive support of an adult looks like).
I think one thing is typically missing from even the better descriptions of adult support programs: consideration of the reality of abuse most of us have faced. Abuse is something that affects well over 90% of autistic people. Too often it’s effects are considered “part of autism” (when you study autistic adults, you are studying abuse survivors more often than not, yet this ‘variable’ is rarely controlled in studies), so they are ignored.
Yet the abuse we’ve endured affects us just as significantly as our autism – it may even be the greater disability. I know that, in my life, it affects nearly every social interaction I have. Sometimes the effects mimic autism, sure, but they aren’t autism. Some of our isolation, low self-esteem, and fear just might not be natural. It might have been taught.
I also wonder how much the average support person learns about abuse. I imagine some learn a bit, but I also imagine that it is hardly a comprehensive program (at best, it may teach people to identify new abuse, and it probably does not assume long term, persistent abuse when it does that). Yet I personally would much rather have support from someone who understands abuse than from someone who understands autism.
It is my sincere wish that the next generation of autistic kids grow up in an environment where they are valued. This means without the physical and sexual assault many of us endured. This means being seen as full people, with the rights as such. This means being seen as valuable members of our families, not the punishment or trials inflicted upon them. It means that we need to be believed when we talk about abuse we’ve faced (one scary thing I’ve noticed talking to other autistic abuse survivors: most of us told someone early on, only to have our experiences dismissed as impossible). And we need the means to talk about abuse (not necessarily speech). But, abuse won’t be eliminated overnight, and anyone who thinks we are better off in this area than we were when I was a kid…well, they aren’t helping things by their denial.
But, once we become adults, we need access to resources to help us heal, and to keep us safe. And, sadly, these resources aren’t usually part of autism support typically (can anyone find me a pamphlet or brochure from an autism support organization that considers the need for services related to abuse, for the autistic people that organization serves?).
excellent post.
Indeed. My history of abuse has caused much more trouble for me than my autism–although most people would say that autism is the more “severe” of the two problems.
There’s another facet to it: Autism and various syndromes caused or exacerbated by abuse will interact with each other to produce symptoms not often seen in the general population. For example, depression may cause an autistic person to lose interest in his perseverations–which could be easily seen as positive by someone who didn’t know him!
All sorts of mental stress (and an abuse-related mental illness certainly qualifies as stress) increases the problematic aspects of autism by reducing one’s resources for coping with the world. What looks like a “regression” may in fact be the onset of an emotional problem… but many may decide to treat for autism, not depression/PTSD/anxiety/whatever, because that’s what it looks like.
Judging from the (deplorably small number of) autistics I’ve seen flourish once removed from abusive environments long enough to regain some self-confidence, I’d say a lot of it is due to abuse and discrimination. Of course, I don’t have a diploma, so I don’t really know anything about such things.
You’re right in that very little is focused on what to do, instead of what not to do. It’s understandable, considering the amount of abusive things done to us, but still. I see that I’m doing the same in my lecture material, so I will try to balance it out a bit. Thank you.
I think it’s important for people to realise as well, that often asking for help, or realising that help is needed, can be very difficult. So the services shouldn’t just presume that if no help is asked for that means no help is needed.
As a mother of a 19 year old who is non verbal and has been abused, i thank you for this post.
I know a number of autistic adults who believed for years that their “social deficiencies” were due to PTSD (from abuse or severe bullying) and not autism. One particular person finally realized that he was likely abused because of his “quirky-not otherwise specified” traits.
Thanks for your insight. I’m currently working on my masters in occupational therapy. Your insider’s perspective is helping me understand how I can help. It’s a process.
~H
I’d think that abuse making someone not handle social situations well would be kinda obvious. . . If you’ve got something like PTSD triggered by going near people, are you going to have any success talking to people?
Of course, this makes too much sense for some people.
“I know a number of autistic adults who believed for years that their “social deficiencies” were due to PTSD (from abuse or severe bullying) and not autism. One particular person finally realized that he was likely abused because of his “quirky-not otherwise specified” traits.”
The converse of this is that, IMO, many of the attributes stereotypically associated with autism – even possibly some of those regarded by the medical establishment as “diagnostic criteria” for autism – actually are PTSD and/or reactive depression/anxiety rather than “innate” autistic traits.
I don’t think i’ve ever encountered (online or offline) an autistic person – hell, even a disabled person – who doesn’t have some level of (what could be diagnosed as) PTSD and/or reactive depression – if not from specific events of abuse, then cumulatively from simply living in a prejudiced and inaccessible society.
I truly don’t know exactly what an autistic person without depression/PTSD (ie, an autistic person raised in a completely non-prejudicial Criptopia) would “look” like (although there are a few fictional characters who i suspect they *might* be a bit like – classic era Dr Who is one). I am sure that they would blow out of the water many of the negative stereotypes currently popular about autism, tho… maybe you and your partner will raise one…
[...] is looking more and more like another case of the lasting effects of ill treatment being attributed to autism itself. Seeing some feelings and behaviors directly attributed to PTSD, in a way that makes [...]
[...] and PTSD post: how frequently “the lasting effects of ill treatment [are] attributed | to | autism itself. Seeing some feelings and behaviors directly attributed to PTSD, in a way that [...]