In a sad irony, the way normal people talk about autism and suicide illustrates why it’s an issue. For example, this article covering a University of Utah study on the subject. It begins:
For most parents, noticing the subtle symptoms of mental health issues, like depression and anxiety, in their children can be difficult. For parents of autistic children, it’s almost impossible.
I don’t believe this. I think parents don’t want to see it and don’t listen. Is rocking back and forth subtle? When I’m stressed out, I start picking at my nails before I realize I’m doing it. I thought meltdowns were one of Autism Parents’ chief complaints, i.e., the times when their children’s distress is most obvious. It stands to reason that, if you get that stressed out, you’re probably bummed afterwards.
“What is the autism and what is depression?” asked Laura Anderson, former president of the Autism Council of Utah and mother of an autistic child. “It is just a constant guessing game and all you’re doing is trying to help your child or your young adult succeed and all of a sudden they’re in depression.”
Her son Ty Anderson, 22, has autism spectrum disorder, is non-verbal, has limited receptive skills, violent tendencies and does not engage with his surroundings.
He was diagnosed with depression in high school and Anderson said she thought he was “happy go lucky,” when she said her son’s psychiatrist, Deborah Bilder, told her, “I think he’s going through bouts of depression.”
Anderson was taken aback by the suggestion and asked for an explanation.
“Well let’s look at this,” Anderson remembered Bilder telling her. “When he goes into his room, when he lays under the covers, when he won’t interact, I just figure he’s tired. She said, ‘I think he’s struggling with depression.'”
Ty Anderson was treated with medication — since talk therapy doesn’t work, Anderson pointed out — and his entire behavior has changed since treatment.
“I would never have known,” she said. “Because his autism is all I know.”
Since we don’t have telepathic access to each other’s minds, inferring other people’s feelings is always guesswork. It’s harder to guess about people who think differently than you do. Welcome to what being autistic is like all the time.
“All you’re doing is trying to help your child or your young adult succeed and all of a sudden they’re in depression.” Um…no. What does “succeed” even mean in this context? It sounds like someone putting a lot of energy into getting ABA covered, defining their identity as a martyr with a defective child, and not stopping to empathize with their child very often.
About “not engaging with his surroundings”:
She says her son has “violent tendencies,” like he’s just bad and that’s part of autism. How much insight does she have into what’s eliciting those reactions from him? Does “limited receptive skills” just mean he’s not making enough eye contact to make her happy?
The impossible-to-decipher behavior of the depressed, nonverbal autistic guy turns out to be…the same way non-autistic people act when they’re depressed. She never thought to consider what he’s tired of or tired from. Maybe he’s tired of life. The possibility is too threatening because she’s responsible for much of what his life is like.
“His autism is all I know” is her problem. He’s been there all along.
Bilder, who works for the University of Utah Neurobehavior HOME program, said this experience is common in parents of children with autism.
In other words, it’s not implausible at all that an autistic adult might have more insight into a situation than someone’s non-autistic family members. Autism Warrior Parents frequently use their status as close relatives of someone autistic as a conversation-stopper. “I know my kid better than anybody.” “You’re nothing like my kid.” It’s common that such people can’t see the depression when their kid won’t get out of bed, so why do they get insta-credibility?
“Depression is a challenge to identify in adults with autism because an inherent part of autism is a difficulty and inability to talk about how someone feels or how someone thinks,” she said. “It’s that much harder to figure out in these folks who can’t talk to us about their feelings and thoughts.”
Maybe, but I think most people have a sense of knowing their children before they can talk. I think many people could talk in great detail about the inner lives of their dogs and cats, because they take an interest in those inner lives.
For many people, dogs and cats are people, while autistic humans are NOT people.
“These parents are amazing in what they will do for their child,” she said. “They are so frustrated that they can’t access services for their kid.”
Skill and determination at bureaucracy fights is not the same thing as knowing how to love one’s child properly.
I was lucky my mom could stay at home, but I received none of these oh-so-important “early interventions.” I liked to line up toy cars, so my parents got me toy cars. Before I could read, my mom read The Hobbit out loud to me. Apparently I thought this scene was hilarious:
I remember I kept having to ask what the word “peril” meant. The point is, that probably did wonders for my vocabulary, attention span, imagination, joint attention, ability to understand emotions, etc. The news was on a lot in the background. My parents put thought into stimulating me with educational stuff. They’d explain things that, looking back, were maybe “age inappropriate.” When we lived in Sicily (4th-early 8th grade), I remember my mom explaining how it works when the mafia demands protection money from local businesses, or they’ll smash them up. They need protection. Get it? The punishment for misbehavior was having to have an awful talk with my social worker dad about why I did that and how I was doomed if I wasn’t perfect at everything. I wasn’t raised to be emotionally retarded. The Jehovah’s Witness morality sermons probably helped. Things were a lot more “free range” back then. I had tons of time to just wander around the neighborhood or the base by myself. In Germany, we could ride across town, through traffic, to the swimming pool by ourselves. A lot of this was just the old-fashioned way of raising children.
So the reason I’m “successful” today is that I had the opposite experience of what a lot of Autism Warrior Parents are giving their children. The presumption of competence goes a long way. I experienced the things that “early interventions” consist of, but it was just my parents doing what they’re supposed to do.
I did hide a lot of my problems, but I was also conscious of a not-wanting-to-see. You do absorb a certain military ethos from being around it, in the sense of high standards and never showing weakness.
But, when I was quietly picking the skin off my fingers in class, the response was to religion-shame me for it. It’s not that it wasn’t explicitly described as a “nervous habit.” I had a lot of “nervous habits.” But it’s bad to show fear.
When I imagine a childhood based on the idea that I’m a defective burden, it sucks. It was bad enough not being seen because of parents’ positive illusions about me. Imagine your loved ones not even giving you credit for the capacity to feel depression. Life is physically uncomfortable for reasons that make no sense, but nobody else minds. You’d kind of dissociate and live in your head, too. Fill your head with an interest. Sublimate. Intellectualize. For YEARS, with more of the same to look forward to. You have to dig deep sometimes.
Keith Flint from The Prodigy just killed himself. I once had a religious experience listening to Music For The Jilted Generation on a walkman, on cassette tape. True story.
“All this study did was really point to the fact that there is a higher risk and we really don’t know why,” she said. “We really want to better understand that and we think one of the really important ways to do that is to actually work with autistic people who have lived experience on this.”
Difficulty interacting socially with others, finding employment and higher rates of depression could all be reasons contributing to the problem, Kirby said.
Exactly 4 hours later, someone commented:
As a man with autism (Asperger’s), I can say that suicide ideation is extremely common in my group. I don’t know how common suicide attempts are. This is not a cry for help or sympathy, but suicide ideation is one of the most prevalent thoughts in my mind day to day. I would love to help with this research, if they can do questioning/interviewing through email. Nothing in this world was made for us or with us in mind. That’s slowly changing in small ways, but it remains true that to be autistic, especially so-called high-functioning, currently carries with it a billion daily stressors that make high stress practically guaranteed, depression and anxiety disorders very likely, suicide ideation the norm, and attempts more likely than for NT peers.
Another 4 hours, and someone else elaborated:
You are right on the money. I, too, have Asperger’s and I was suicidal for many years. Fortunately, that is now a thing of the past. What makes it worse is that if you have above average intelligence, you know that you’re different, but don’t really understand why you’re different, which makes it worse. Because you seem smart, people assume you are also well adjusted, but all your quirks and foibles and faux pas clash with that assumption resulting in you being a target of bullies. All the “normal” kids your age make fun of you, pick on you and make you a social pariah. You don’t understand why because you think you are acting normal. Being a pariah contributes to depression and anxiety, and you retreat into yourself while shutting out the rest of the world in an attempt at self-preservation.
I think the two of them have definitively summed it up. The answer has been provided in the Deseret News comment section.
Is it really so hard to imagine how all of this could start getting to you after a while? Apparently it is! That’s fucked up to read about in the newspaper. Is it hard to imagine, or is it that normal people feel guilty for making our lives like this, and it’s a psychological defense they cooperate to maintain? Either way it feels bad.
It really is a big existential problem, or it forces you to deal with the universal existential problems. And again, normals are oblivious that this is something we’re dealing with on a daily basis.