Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today's article is the question most parents of autistic children ask themselves as they notice their kid growing up. Or, I suppose, it's the best answer we have at the moment.
I participate in a social group for more middle-aged autistic people. Of the people there (ages 30s to late 40s), I get the sense that most of them do not lightly share their diagnoses. The stigma is real, especially in the field of employment. Those of us that hold regular jobs don't seem to openly live as autistic adults, for the most part.
I can confirm that there is little to no incentive to live openly, and that services for autistic adults are obtained at the cost of a lot of time and frustration. The process is somewhat similar to pulling teeth while jumping through circus hoops, and requires you live below a certain income threshold to qualify for Medicaid (or, if you're very fortunate in your life circumstances, pay exorbitant amounts of money out of pocket). I've heard quite a bit on the Medicaid route from the parents I talk to at the local meetings in the area, and while there are definitely success stories, the path to that success is... daunting. And full of road blocks.
Even assuming you have the money to throw at services, it's not a sure thing that you'll find the right kind of support. I fall into the "very fortunate" category above, though mostly my services fall under "give me the tools to help myself" rather than "I need other people to help me live my best life." As I age, I'm sure that will change. Especially if I don't lose weight and continue to hold a desk job, mobility difficulties are likely, and with that, a reduction in independence and employability.
With my parents' support and assistance, I've been able to secure the services of my doctor (generally when I say "my doctor" I mean this doctor, not my primary care physician)... who wears many hats, as therapist, nutritionist, general health and life coach, and neurofeedback practitioner. When I went looking for a therapist, years ago, I found her and decided to give her a try... and got immensely lucky. She and I have developed a pretty good relationship, which is essential for successful therapy. That she has so much experience in so many fields just made it more like one-stop-shopping, rather than needing to tie together and communicate with a whole team of professionals. It can take years to find a good therapist that you can work with, hence "immensely lucky."
All this to say, I suppose, that being an adult autistic person is hard. It carries challenges with it, and our struggles are stigmatized in overall US culture. I talk about having a therapist openly (at least among friends), because it normalizes that fact, but when I most needed one, I absolutely wouldn't have, because it flies in the face of the social norm of self-reliance. It might be considered a weakness, a failing on my part as an adult. For an adult already struggling with depression, anxiety, and employment, having that additional pressure was unthinkable.
Which is why, I guess, I'm not overly surprised to hear Mr. Robison's informal study received a lot of negative responses from the autism community. Personally, I would be inclined to respond otherwise... but only because I'm sufficiently stable and confident of who I am. I can only live openly as I do because of that stability, and no one has the right to demand that openness from me. Because there absolutely is a stigma. Sometimes, when I disclose, I get weird looks, or people politely avoid me, or close doors to opportunities. Once, I got a barrage of stories about every bad experience that person had with autistic people in his life of work. It was... really disheartening.
I choose to live openly because there are small children with autism growing up, and they need to know they aren't alone. And because there are parents that are trying their hardest to do right by their kids, but have so many questions and misconceptions that the task feels Sisyphean. And so, I'd participate in such a study, if it was offered... but I am in the minority. And I'll continue to be, until things change.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Today's article is the question most parents of autistic children ask themselves as they notice their kid growing up. Or, I suppose, it's the best answer we have at the moment.
I participate in a social group for more middle-aged autistic people. Of the people there (ages 30s to late 40s), I get the sense that most of them do not lightly share their diagnoses. The stigma is real, especially in the field of employment. Those of us that hold regular jobs don't seem to openly live as autistic adults, for the most part.
I can confirm that there is little to no incentive to live openly, and that services for autistic adults are obtained at the cost of a lot of time and frustration. The process is somewhat similar to pulling teeth while jumping through circus hoops, and requires you live below a certain income threshold to qualify for Medicaid (or, if you're very fortunate in your life circumstances, pay exorbitant amounts of money out of pocket). I've heard quite a bit on the Medicaid route from the parents I talk to at the local meetings in the area, and while there are definitely success stories, the path to that success is... daunting. And full of road blocks.
Even assuming you have the money to throw at services, it's not a sure thing that you'll find the right kind of support. I fall into the "very fortunate" category above, though mostly my services fall under "give me the tools to help myself" rather than "I need other people to help me live my best life." As I age, I'm sure that will change. Especially if I don't lose weight and continue to hold a desk job, mobility difficulties are likely, and with that, a reduction in independence and employability.
With my parents' support and assistance, I've been able to secure the services of my doctor (generally when I say "my doctor" I mean this doctor, not my primary care physician)... who wears many hats, as therapist, nutritionist, general health and life coach, and neurofeedback practitioner. When I went looking for a therapist, years ago, I found her and decided to give her a try... and got immensely lucky. She and I have developed a pretty good relationship, which is essential for successful therapy. That she has so much experience in so many fields just made it more like one-stop-shopping, rather than needing to tie together and communicate with a whole team of professionals. It can take years to find a good therapist that you can work with, hence "immensely lucky."
All this to say, I suppose, that being an adult autistic person is hard. It carries challenges with it, and our struggles are stigmatized in overall US culture. I talk about having a therapist openly (at least among friends), because it normalizes that fact, but when I most needed one, I absolutely wouldn't have, because it flies in the face of the social norm of self-reliance. It might be considered a weakness, a failing on my part as an adult. For an adult already struggling with depression, anxiety, and employment, having that additional pressure was unthinkable.
Which is why, I guess, I'm not overly surprised to hear Mr. Robison's informal study received a lot of negative responses from the autism community. Personally, I would be inclined to respond otherwise... but only because I'm sufficiently stable and confident of who I am. I can only live openly as I do because of that stability, and no one has the right to demand that openness from me. Because there absolutely is a stigma. Sometimes, when I disclose, I get weird looks, or people politely avoid me, or close doors to opportunities. Once, I got a barrage of stories about every bad experience that person had with autistic people in his life of work. It was... really disheartening.
I choose to live openly because there are small children with autism growing up, and they need to know they aren't alone. And because there are parents that are trying their hardest to do right by their kids, but have so many questions and misconceptions that the task feels Sisyphean. And so, I'd participate in such a study, if it was offered... but I am in the minority. And I'll continue to be, until things change.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Just to switch things up at a video interview I disclosed that I was on the spectrum and mentioned towards the end that yes I could see (because a technical recruiter told me I had to make others comfortable with my physical disability). Suffice it to say I did not get the job but I don't think I would have either way so it was a nice way to test the waters. When I mentioned my visual impairment he was comforted because he said he wasn't sure if I could see. I'm getting to the point where abelism and ageism are killing my prospects for programming jobs so I'm looking into some kind of home care technology position which I don't know even exist (setting up life alert pendants, Amazon Echos, smart home gadgets etc.. in seniors or people with disabilities' homes).
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