“Glorifying” Autism

Those of us who speak of neurodiversity and autism acceptance are sometimes met with great vilification–”How can you speak so highly of something that causes so much suffering? You wouldn’t be so positive if you had ‘real’ autism. People like you make it harder for people like my child/sibling/close loved one to get the help they need. Why are you glorifying such a horrible disorder?”

Perhaps you and I are at a bit of a misunderstanding with each other. I’m not here to pretend that autism is all roses and sunshine, and neither are the vast majority of autistic advocates. I know that there are a lot of negatives that come with being autistic, and I know that these negatives have very serious consequences. Moreover, I want there to be treatments and ways to alleviate all of those negatives.

A recent study suggests that the average life expectancy for someone on the autism spectrum is 54–40 if the person has a co-morbid intellectual disability.

This does not mean that a single, individual autistic person can be expected to die at 54 or 40. This means that if you add up all of the ages of death for autistic people in the survey sample–including all those who die in childhood and all those who die very late in life–and then divide by the number of autistics in the sample, that number comes up to 54. But then doing the same for non-autistic people give you a number of about 70. Which means that a lot of autistic people are dying a lot sooner than they should.

For those with co-morbid intellectual disabilities, common causes of death include accidental deaths (namely drowning and traffic incidents) and seizures.

For those without, one of the most common causes of death is suicide–autistic adults are nine times more likely to die by suicide than the general population. Many autistics struggle with co-morbid anxiety and depression. Heart attacks and strokes–stress-related conditions–are thought to be another common killer among this population of autistic people.

In both populations, it’s been noted that there are financial, communicative, and awareness barriers to access to healthcare, physical and mental, that might prevent some of these deaths.

I’d be lying if I said that I’ve never considered that I might would be happier and more successful were I not autistic. I’d have better emotional regulation, better social skills, more confidence, less anxiety, and probably even better motor skills;  I’d probably be seen as more competent and autonomous by my family members, and they wouldn’t have had to have worked quite so hard with me when I was younger or worry about me quite so much now; I wouldn’t feel so guilty about the stress I’ve caused them. I’d be able to go to concerts without extreme pain and discomfort.  I’d have a better chance at having a steady source of income by now. There are career paths that I don’t pursue due to my poor emotional regulation, such as being a Special Education teacher, that I’d be able to pursue and maybe even excel at. I don’t have much trouble at all believing that I’m at a much higher risk of  dying of a stress-related disease before I reach my due age; some days, it surprises me that I haven’t perished of one yet.

And I know that, as someone with an extremely mild, fully verbal, non-epileptic, generally-able-to-be-out-in-the-world presentation of autism, I could never truly understand a lot of what it means to suffer on the autism spectrum. I don’t have to worry about my main mode of communication being taken away from me on an airplane. I don’t have to worry about seizures or seizure medications. I’ll probably be able to find a job that pays a livable wage, I can drive (although I know that quite a few people wish I wouldn’t!), and my sensory issues don’t prohibit me from carrying out everyday tasks like going to the grocery store.

But focusing solely on the negatives helps neither myself nor those on any other part of the spectrum. Thinking about everything that I’m not, everything that I can’t do and can’t be, only makes me feel hopeless, scared, guilty, and sometimes even suicidal. Which is a way that a lot of autistic people and a lot of caretakers feel when operating under an exclusively pathological narrative. That’s how you get parents and caretakers so hopeless that they kill the autistic people in their charge. That’s part of how you get a 9x suicide rate. Maybe one day, science will find a way to prevent a person from ever having to deal with, say, seizures or debilitatingly-severe sensory issues or emotional dysregulation. But we’re far from that point: while we do have some treatments for seizures and therapy for dysregulation and social skills, these treatment are not yet effective for every person in need of them, and we still don’t fully understand much of the brain itself. So we’d better come up with some others ways to improve the lives of autistic people in the meantime.

And one way of doing that is to see what parts of this whole autism package we can work with.

If I think instead of all the reasons I should be glad that I’m autistic–I can persevere on a task for a long period of time, I have an excellent memory,  I’m verbally gifted, I’m highly imaginative (which is, in part, helped by my sensory “weirdness”), I notice details that others may miss, my anxiety fuels my academic performance, and my social “aloofness” can actually defuse many tense situations–then instead of feeling drained, hopeless, and sometimes even suicidal, I can feel…if not proud, then at least content, accepting of the situation, and, yes, even grateful. I can focus on my strengths and capitalize on them. I’ll continue to work to improve my areas of weakness, of course, but I know that it’s my areas of talents–areas influenced by my neurological configuration–that will help me to thrive. So that’s why I, personally, “glorify” autism: I have to for my survival.

From the number of autistic advocates who take a similar approach, it seems that this is the case for many on the spectrum. Julia Bascom, Autistic advocate and writer, talks about The Obsessive Joy of Autism and how she sees the intense satisfaction that comes with a “special interest” or stimming (self stimulation/fidgeting) as “sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel” and how  being autistic can sometimes mean being very, very happy (while I seldom ever happen to have the energy to be that ecstatic about anything anymore, I do believe that I know the feeling, and it is, indeed, a pleasant one).

Everyone on the spectrum have things at which they are better at than others, things that may, at the very least, bring them joy and comfort. Dr.  Peter Vermeulen recently did a studyon assessing happiness (“good feeling,” as the study terms it) in various autistic individuals. He discovered that regardless of the severity of disability or the number of “life goals” (career, marriage, independent living) met, happiness is contingent on the amount of pleasurable experiences, be it quality of relationships or sensory input, that a person is exposed to. I believe that this paragraph says it best:

Quality of life is not only the result of ‘big’ projects, such as having a social network or having a ‘job’ to be proud of, but also of many little things. For people with autism and severe learning difficulties, it makes a big difference if their environment offers them the sensory experiences they prefer: the drinks they like to drink, the clothes they prefer to wear, the amount of light they like, objects and clothes in their preferred colours etc.”

What it really boils down to is this:  embracing the positives of autism isn’t mutually exclusive with seeking treatments/accommodations to alleviate the negatives.  

I can wear my “This is a cat. Not a defective dog” t-shirt at the same time that I wear mychewable bracelet that redirects some of my self-injury. I can wear my noise-cancelling headphones in the same place that I speak out against the use of loud speakers at an autism event (note to DJs and sound technicians: if you are working at an event that has “autism” anywhere in the title, assume that loudness can cause meltdowns in some of the participants and adjust your volume accordingly).  I can advocate for allowing autistics of all varieties to pursue an education while advocating for the isolated testing and note-taking accommodations that make that education possible for many. I can push for medical marijuana to fully legalized and implemented so that everyone with seizures (and chronic pain and a host of other conditions) can see a lessening of symptoms while pushing against the tendency for some behaviorists to try to “normalize” their clients by “eliminating” stimming.

To put it another way: female-bodied persons are much more likely to suffer intense menstrual pain and to die in childbirth than are male-bodied persons, yet few would see being female-bodied as a disease in need of eradication. Those complications do need to be watched for and treated as soon as possible, and while I don’t think that anyone would be against a cure for menstrual pain, I also doubt that too many people would be in favor of eliminating femaleness itself.

If I’ve ever trivialized the hardships that autistics face, then I do genuinely apologize. It is not my intention to get in the way of finding treatments for the seizures or suicide or sensory overload or stress or whatever it is that causes any specific autistic person to suffer. It is also not my intention, however, to sit here and tell you that autism is a tragedy that dooms the “sufferer” to a life of misery. There are many complications in my life, but there is also much humor, much delight, much chocolate, much love, and much happiness. Those from all over the spectrum report the same.

My end goal is to make lives better for as many as I can, including my fellow spectrumites, and, yes, that sometimes includes “glorifying” the very thing that gives us so much trouble sometimes. I’m sorry if this makes you uncomfortable. But I’m not sorry for saying that there may be something worthwhile in this whole “being autistic” thing.

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