This is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.
D is for Depression (and Anxiety)
No one can agree on how prevalent depression and anxiety are among Autistic children and adults. But, so far, everyone from professionals to parents to Autistic people ourselves agrees that Autistic people are much harder hit by depression and anxiety than the general population. Many studies show rates of depression as high as 50% to 60%. One alarming study found Autistic children had 28 times as much suicidal ideation when compared to non-Autistic children.
The studies of our depression and anxiety are still in their infancy at the moment. Researchers complain that it is harder to even determine if we are depressed at all because our facial expressions and methods of emoting are so different from the non-autistic population that a separate diagnostic criteria need to be developed. Many of us “look depressed” all the time to those who are not familiar with our expressions. Many of us can move from feeling fine to clinical depression without it showing on our faces (instead, observers might notice weight gain or loss, changes in patterns of activity, etc.) Additionally, Autistics who have not yet developed reliable means of communication are not able to describe their mood to others. Communicative Autistics with alexithymia may not even be aware of our moods sufficiently to clearly say if we are depressed or not.
One thing I am not seeing addressed enough (in my opinion) is the question of whether our increased tendency toward depression and anxiety is a biological “co-morbid trait” of autism or whether most of our mental health challenges are situational. Of course scientists aren’t allowed to speculate in public until they have conducted the sorts of studies that would tend to back up or refute their speculations, but looking through the scientific literature, I feel as if few people are ready to even begin examining any “biological vs. situational” questions yet.
This is troubling, because I feel it is very important to know whether an autistic neurology and biology are behind the higher rate of mood disorders or whether (as I strongly suspect) the bulk of depression and anxiety among Autistic children and adults could be alleviated through social understanding and acceptance. I think the causes are ultimately a mix of biological and situational but I see clear evidence that situational depression dominates.
If you stop to think about all the reasons an Autistic person could be depressed, it’s obvious that we live in a depressing world! The fact that we aren’t all depressed is a testament to the resilience of the human spirit and the persistence of Autistic people.
To start with, we live in an uncertain world. That is something that increases everyone’s anxiety, but Autistic people have special needs for order, predictability, and a sense of control in our lives that goes beyond the level of these needs in most allistic (that is, not autistic) people. Since anxiety is closely linked with depression, lowering anxiety levels will lower depression levels.
For example, I have a friend whose Autistic daughter becomes very anxious when someone uses the stove. I’m not sure what the source of her anxiety is. It seems to be linked to stirring things in pots, so maybe there is a sensitivity to the sound of the spoon scraping the pot? Or maybe something else happened one day while her mother was stirring something on the stove and the two events became linked in her mind. On a certain level, though, it doesn’t matter why the daughter becomes distressed by cooking. All that matters is that her anxiety goes through the roof when she sees someone cooking.
Her mother’s solution? Simple: stop using the stove. Okay, maybe that’s not so simple, but Mom has found other ways to cook food and keep the family fed and she says it is worth the extra effort because her daughter is so much less anxious and depressed now that she has a greater sense of certainty about the kitchen. People make comments like, “you’ll get tired of accommodating her!” but her mother sees so much benefit in eliminating a huge source of stress from her daughter’s life and is glad to be able to do something so small, in the grand scheme of things, in order to help her daughter grow up feeling more secure and happy. Maybe someday the “stove phobia” will pass. Maybe not. What matters is that a little girl feels calmer and happier and has more room in her life for learning and loving.
Another depressing reality Autistic people live with is social isolation. The internet has helped bring many Autistic people together and that sense of community and shared culture helps a lot, but the Autistic community cannot be everywhere that Autistics are. When I go out in pubic alone, I am one Autistic surrounded by a sea of mostly allistic people, most of whom have very little understanding of autism.
Our experience of social isolation begins very early in life. Speaking for myself, my levels of stress, anxiety, and depression were relatively minimal until I started school. There were stressful issues at home (My brother was diagnosed with cancer when I was five (I think. Maybe when I was four?) and died about a month before my seventh birthday.) but when I started pre-school at age 4, I was not really aware of the intense events on the horizon in my home life.
I remember being very excited about school. I remember waking up on the day of my 4th birthday, running into the dining room, and jumping happily up into my mother’s arms. “Do you know what today is?” she asked me.
“And what does that mean?”
“I get to go to school now!”
She laughed (I guess she was looking for a different answer?) and said, “not yet, but soon. You’re old enough now, but we have to wait until the school year starts.”
But school did not quite live up to my dreams. I was excited about school because I loved reading (I had picked the skill up from watching television shows like Sesame Street and Electric Company and from following along on the page when my parents read stories to us.) and because my brother already went to school and I wanted to do every single thing he did. When I got to school, I found there was no reading (I would have to wait two years for reading instruction and by then my reading level was so advanced I found Fun With Dick and Jane to be a tedious bore) and the other children were loud, chaotic, and generally unpleasant. I spent a lot of time hiding under the table.
While I was self-isolating, it didn’t make the social isolation any less painful. I wanted friends. I still want friends! And I still self-isolate when I am overwhelmed. Too often, I hear people say that Autistics don’t want friends. Given the infinite diversity of human expression, I’m sure there are some Autistics who don’t want friends. But I believe most of us do want friends and people too often misinterpret our reaction to being overwhelmed as a sign that we don’t want friends at all.
Autism acceptance has a role here. When we understand, or are aware of, this sensory overwhelm that causes Autistic people to pull away from others, it might seem like the answer is to do something to “fix” the Autistic so they can tolerate lots of noise and movement and chaos and thus have friends. A whole lifetime could go wasted while trying to change the core neurological wiring that goes into sensory defensiveness. But with autism acceptance — the stance that we are different, even disabled, but not broken and should be accepted and loved for who we are rather than for dreams of who we might be changed into — a more immediate solution is to arrange social situations where Autistic people can spend time with others one-on-one or in very small groups in quieter, calmer environments. I am middle-aged but still that same overwhelmed child is inside me. I would far rather spend time with one or two people in a quiet room or a beautiful natural setting than go to a party or try to socialize in a noisy coffee house.
In addition to overwhelm, there is stigma to deal with. Some people find the mannerisms of Autistic people off-putting, whether they know the person is autistic or not. Some of the ways we pursue friendships are annoying or frightening to others who don’t understand and think we are harassing or stalking them. Social customs dictate that people avoid or abuse us in those situations instead of speaking openly and honestly to us about how our behavior makes them feel. Autism acceptance increases the chances that people choose to communicate to us about the things we are doing that cause them to feel uncomfortable instead of just abandoning us or taking legal action against us while we are left to wonder what it was that we did wrong. Low self-esteem, anger, shame, depression — these are very normal reactions to social scenarios in which we are genuinely trying to develop friendships and repeatedly get “slapped away” with little or no explanation.
Bullying, as discussed a couple of days ago, is a huge problem for Autistic people of all ages and is another source of social isolation. If the bullies are powerful, not only do they make life a torment for an Autistic person, but they can make it less likely that others will reach out in friendship to an Autistic person, for fear of also becoming a target of the bully. I think most kids who stand by and watch bullying without doing anything about it are just too relieved that they are not the bully’s chosen victim. Others might also feel annoyed or threatened by the Autistic person’s words and behavior that they don’t understand and choose to stand by passively because they feel the Autistic person deserves the torment, even if they, themselves, are unwilling to administer the social punishments. Being bullied is very socially isolating. I have never felt so alone and unloved as I have during those times when I was being bullied and onlookers were either joining in or standing passively, doing nothing to help or support me.
A study conducted in England found that only 1/3 of Autistic people reported feeling adequately supported by others. It is very depressing to have life difficulties and feel like no one, or too few people, are rooting for you to succeed. It is small wonder that some studies have found a 60% depression rate in Autistic people if roughly 60% of Autistics feel they have no one on their side to help them through a difficult, challenging, and often frightening world. Another British study found that over 50% of parents believe their child is not in a school environment that suits their needs. And yet another found as many as 1/5 of Autistic children have been excluded from school at some point. That study resonated with me because I was expelled from school due to being an “unmanageable behavior problem” that the administration would prefer someone else be burdened with.
Too many Autistics grow up believing that they are the root of all their problems. Too many are explicitly told that they are bringing their problems on themselves. I was told that I was to blame for the bullying I experienced. It’s a harsh message, whether delivered explicitly or implicitly. It’s a depressing burden to grow up hearing what a depressing burden one is. Awareness is important but it is not enough. All awareness by itself accomplishes is that it gives people an excuse. Without acceptance and accommodation, becoming aware of someone’s autism just leaves bullies saying, “see? I knew there was something defective about you.”
And not just childhood bullies. I left a community a year or two ago because I saw someone being bullied and I stood up for them. The bully said, “you don’t understand. You’re Autistic and having a melt down. You don’t get social things, so you can’t possibly know what’s really going on here.” That is awareness without acceptance. That is autism being used as a bludgeon against the Autistic. That bully’s “autistic awareness” was even harder on me than if they had known nothing at all of autism.
But we do need increased awareness of autism! So that means we really need increased acceptance of autism. The two go hand-in-hand: without awareness, there can be no acceptance. But without acceptance, awareness does immeasurable harm to Autistic people.
A final depressing point to touch upon is unemployment. Most people derive a sense of self-esteem through feeling productive and useful. A British study found that 61% of unemployed Autistics say they want to work but only 15% of Autistics are actually employed. Once again a big factor is stigma against autism and lack of acceptance and accommodation of Autistic workers. Of course unemployed Autistics are prone to depression. They are more likely to feel dissatisfied with life, more likely to experience social isolation, and more likely to live in poverty. And again the data match up: if 85% of Autistics are unemployed and 61% of them want to work, that means roughly 52% of Autistics want to work but are unable to find or keep employment. So why would it be surprising to see studies finding a 50% to 60% depression rate among Autistics in light of those figures?
There is not an epidemic of autism but there is definitely an epidemic of depression and anxiety among Autistic people. There is strong evidence that much of this depression is situational and there is even stronger evidence that increasing autism acceptance will help to remedy much of what makes life so difficult for Autistic people. Yes, there are challenges and impairments within each Autistic person, but far greater than those are the stumbling blocks we find outside ourselves, every time we interact with members of society at large.
The more that we are able to help people to see the great value of Autistic people — and not merely value tied to academic performance or career skills, but inherent value, human dignity, and worth — the further along the road we will have travelled toward healing the depression and anxiety that so many Autistic people live with and suffer through every day.