gee, i wonder what’s depressing about autism

Cheryl Platzman Weinstock has published two well-researched articles in Spectrum News about autism, depression, and suicide. The suicide one came first, and I’ll be commenting on them in the same order.

I was diagnosed with autism in my mid-30s. I’ve thought about killing myself since middle school, but never actually tried. I officially have Unspecified Depressive Disorder and Unspecified Anxiety Disorder (lol). These are my thoughts.

Connor’s mother, Lori McIlwain, recorded one of his Sunday-night tantrums when he was 10 to share with his doctor. “Poof me away. Poof me away,” Connor pleads in the audio clip, his voice strained. “I want to leave school forever. Throw me away forever; I really want to go away forever.”

The doctor offered suggestions on how to calm Connor and prescribed medication. Still, one day last year, Connor, then 17 and a sophomore in high school, became particularly distraught after a confrontation with a teacher. “We got the call from the school and picked him up,” McIlwain says. When he got home, he began trying to harm himself. “He told us, ‘I’m ready to die now,’ and said goodbye to us.”

Connor’s parents had often kept him home from school to prevent his dangerous meltdowns, but after this incident, they pulled him out of school for good. “Connor is a talented kid,” McIlwain says, but “no math or science was worth his life.”

Obviously, school is driving him to suicide. That’s not specific to autism, though. What stands out is that the parent summarizes school as “math or science.” But it looks like her son had a confrontation with a teacher, not math or science. Maybe it’s to remove identifying details, but we haven’t learned anything about what’s going on. For all we know, the teacher picks on him all the time and the other kids take their lead from it. There’s just supposed to be a vague badness about autism, which makes school a nightmare for some reason. No one is responsible. The adults are probably willfully in denial about what’s going on.

“I think part of the problem is that we only see things we’re paying attention to,” says Jeremy Veenstra-VanderWeele, professor of psychiatry at Columbia University. “Until very recently, we didn’t expect to see it, so we didn’t see suicidality in patients with [autism]; it just wasn’t on our radar.”

Clinicians may wrongly assume that people on the spectrum don’t have complicated emotions, or may discount their outbursts, says Paul Lipkin, director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. “These children feel a normal range of emotions as other children, but [they] don’t do it in a typical way, and they’re not necessarily taken as seriously because they have a wide range of emotions showing already,” he says. Doctors also misinterpret self-harm — a classic warning sign for suicide in the general population — as a part of autism.

Exactly. It’s willful and demeaning. Everyone already knows why autism and depression are related. Normal people say all the time, in so many words, that they’d commit suicide if they had to trade lives with us. This is why scientists focus on preventing our births and why people don’t want to marry us.

Further, they know this misery comes from their own treatment of autistic people.

Other research shows that being bullied is common among young people with autism and may lead to depression and anxiety. In June, a study of the same U.K. cohort found that children with autism traits not only have more signs of depression than typical children at age 10 but that signs of depression persist for at least eight years, especially if a child has been the target of bullying. “Bullying explains 50 percent of the relationship between problems with social communication and a diagnosis of depression,” says lead investigator Dheeraj Rai, senior lecturer at the University of Bristol in the U.K. “We know that people with autism feel victimized after bullying; it’s very common and something many people and their families relate to us.”

Being bullied may also increase the risk of suicide in another way: by increasing aggression. In an unpublished study presented in May at the International Society for Autism Research (INSAR) meeting, a group in the Netherlands looked at experiences with bullying in 185 adolescent boys, 89 of whom have autism. The more victimization the teens faced, the more anger and fear they expressed. Compared with typical boys, though, autistic boys reacted predominantly with anger — a response that could lead to uncontrollable emotional arousal and raise the risk of suicide.

“Bullying” is far too vague. It’s this:

When Noah was 9, another boy at his summer camp wouldn’t leave him alone. Noah told the boy to stop and complained to his camp counselor, but to no avail, McSpadden says. Finally, in a fit of anger, Noah threatened to stab the boy. The camp’s staff called the police — and then Noah’s parents. By the time McSpadden arrived, a police officer was on the scene; Noah was terrified and thought the officer was going to take him away. “When I told [the officer] Noah has autism, he told me to stop making excuses,” McSpadden recalls. She took Noah out of the camp immediately. He still makes threats to harm himself when he gets angry, she says, but “we are dealing with it at home right now, with his therapists and his psychiatrist.”

It’s a disaster because the adults reacted in this way. In middle school, when I was getting bullied, I once started choking someone in the middle of an English class. I didn’t get in that much trouble. The particular teacher had my back and knew I wouldn’t have done that without provocation. I also once kicked someone, hard, because they were making fun of someone. I had to go to the office and they called my parents, but I don’t think I was even suspended. Navy school in Sicily in the 1990s.

Importantly, the bully knows the adults are going to react in this crazy fashion, and they watch the whole thing go down with a smirk on their face. It’s the complete betrayal by society.

She says she was ridiculed at school and didn’t have any friends throughout childhood. She was so afraid of being teased that she skipped eating lunch in the cafeteria. People told her she was smart, but she couldn’t converse with them. “When I tried to talk, it was like having my jaw wired shut — it was difficult to push the words out,” she says. “They made fun of me and were really cruel.” At age 15, she attempted suicide and was unconscious for days; she tried again at 17.

After she recovered, she often contemplated suicide again. Her social difficulties made it difficult to hold down a job or keep her marriages together. Nearly 40 years after her initial suicide attempt, Cheryl says she “looked out over all the devastation and waste spanning all the years of my life” and besieged her health insurance company with requests for help. Finally, at 56, she was diagnosed with autism. “Once I was diagnosed, it was such a tremendous relief. I could stop blaming myself for all my mistakes with people,” she says. “It gave me a new lease on life.”

How much science do we need to understand why that’s depressing?

Notice that the article still subtly blames her for everything. It’s not that bullying, exclusion, seeming weird, etc. continue into adulthood. It’s that she had “social difficulties.” It’s not that autistic people are often mistreated in relationships. It’s that she broke her marriages by being autistic. Cheryl’s learned to stop blaming herself, and the normals need to catch up.

Parents sometimes worry that asking children about suicide can put ideas into their head, Horowitz says, but in the typical population, that is unquestionably a myth. “There are at least four studies refuting that you can make someone think about suicide by asking them,” she says. Still, she says, “we should test [that] out in the autism population, because sometimes people with autism can get stuck on ideas.” Depending on what the studies find, scientists may need to create screening guidelines specific to this group.

Well, it’s depressing to be patronized in this way. Before this quote, the article has multiple examples of us figuring out the concept of suicide before age 10. This Horowitz person thinks an autistic person’s life could be A-OK until a stranger asks them a question. Maybe we’ll get stuck in suicidal rumination because our obsessions are so random! LOL!

At last we found the answer: just buy an extra house. Of course!

McIlwain monitors Connor’s moods carefully. Sudden, abrupt noises, the sound of radios and televisions, and even certain words can throw Connor into extreme panic. His mother is so concerned for his safety that she tries to shield him from any triggers. In April, the McIlwains bought the house next door to make it easier to separate Connor from his 10-year-old sister, particularly when she plays with her friends or practices her violin.

Ultimately, they hope to build an addition onto their new home so they can all live together again. But having the extra space next door is already helping. Because Connor can find peace and quiet when he needs to, he has more good days than bad, and over the past two months, hasn’t once attempted to run into the street.

If anything, I’d bet the mom runs around anxious all the time and it rubs off on him. She seems to understand sound sensitivity on a behavioral level but not an empathetic one. If you can’t filter out background noise, sound is invasive. It pulls your attention involuntarily, bottom-up. It gets hard to keep a train of thought, which is frustrating. Especially when the reason is some obnoxious TV show. Why couldn’t they just use headphones when he’s around? Surely they could afford wireless ones for everybody, with all that house money.

Turning now to the more recent article on autism and depression:

Nicholas’ ongoing battle with major depression is not unusual for people on the spectrum, according to a meta-analysis of 66 studies published in January: They are four times more likely than neurotypicals to experience depression over the course of their lives, although scientists are unsure why. Their rates of depression rise with intelligence and with age. In fact, says Carla A. Mazefsky, associate professor of psychiatry and psychology at the University of Pittsburgh in Pennsylvania, more than 70 percent of autistic youth have mental health conditions, including depression and anxiety, and these are thought to often persist or worsen into adulthood.

This completely contradicts the need for all kinds of new tests and screenings and studies. If someone’s autistic, they’ve got issues more likely than not. That’s what happens when your social life is fucked up, right?

This aggravates me, and I’ve touched on the topic before:

Despite this grave set of circumstances, there is little hope available. There are no studies on which screening measures are most useful or which treatments work best to ease depression among autistic people. It is not known, for example, whether depressed autistic people respond differently to psychotherapy than others do, or how best to adapt treatments such as cognitive behavioral therapy for them. Talk therapy, in particular, may not work well for autistic people, because they can struggle with social communication and with identifying their feelings, a trait known as alexithymia.

Talk therapy helps when the neurotypical therapist can relate to you. That can be an obstacle…Yeah, I guess it’s hard to recommend CBT with a random. My therapists’ paradigms were Lacanian/existential, ACT/narrative therapy, and Jungian/Gestalt. It was the Bay Area and I paid for most of it out of pocket. Life-changingly helpful but not generally available. Like hell I want to talk to a therapist who assumes I’m incapable.

It is also unclear what effect medications for depression have on people on the spectrum. “They may have more side effects and more difficulty,” says Jeremy Veenstra-VanderWeele, a child and adolescent psychiatrist at Columbia University in New York. Antidepressants can even disrupt autistic children’s sleep and make them more impulsive, potentially outweighing any benefits, he points out.

This is because psychiatrists don’t take their own drugs, so they do stupid shit recreational drug users would have the common sense not to do. When I read this paragraph, I think of things like tweaking the kid out on stimulants and then being surprised they’re irritable or not sleeping or, y’know, acting like they took a stimulant. I take bupropion every day, which is stimulating. On a play-it-by-ear basis, I take adrafinil on top of that. Too many days in a row gets uncomfortable. If I were a kid under a psychiatrist’s care, I’d be taking the pills based on a schedule instead of listening to my body.

“Unfortunately, we don’t have a gold standard to care for these [autistic] patients yet,” she adds, but she sees no reason to wait: “I think that CBT is unlikely to do actual harm to treat depression in this population.”

Some researchers are exploring ways to modify CBT to treat depression in autistic people. Mazefsky says clinicians could follow a predictable session routine and structure, incorporate a client’s strengths and talents, repeat concepts often and make abstract concepts more concrete via visual aids and worksheets. They could also put greater focus on emotion recognition. Mazefsky has also found that incorporating mindfulness training can help autistic clients improve their emotional awareness.

Having a psychiatrist push the Feeling Good Handbook on me definitely delayed me from entering therapy for a long time. I find CBT alienating. When I decided to do therapy, I went with unstructured, aimless dithering about my childhood and it was great. I didn’t know I’m autistic yet, but I knew I had some shit going on. When the therapist tried to make things CBT-ish by prompting me for concrete goals, it was intrusive and seemed beside the point. It makes more sense to me to fix my head first and let that manifest in changed behavior.

The first comment, by Cee, says it all much more concisely:

I can give you a tonne of reasons why depression is common in Autism:
1. Bullying/harassment in school and in the workplace
2. Lack of job opportunities
3. Social isolation/loneliness
4. Living in a society that does not value, understand, respect or even accept us
5. Backstabbing from people we know and trust
6. People misunderstanding us and/or misunderstanding people
7. Lack of romantic partners and people just generally not being interested in us and driving potential partners away
8. Lack of support in adulthood
9. Lack of emotional support, which comes with a lack of friendships and social isolation

And it’s still not obvious? Should I go on?