Saturday, February 17, 2018

Mental Health and Autism: Why Acceptance Matters

Anxiety
Photo © Mariana Zanatta | Flickr/Creative Commons
[image: Hand-drawn black-and-white outlined block letters spelling "anxiety"
on a background of "anxiety" written repeatedly in black & filling all space.]
Christine Motokane
www.workingthedoubleshift.com

It is well known that individuals on the autism spectrum are likely to have co-occurring mental health issues such as depression and anxiety. However, mental health is a less-discussed topic surrounding autism, compared to behavior and social challenges, etc.

As an autistic young adult with anxiety,  I can give personal insight on this high prevalence. A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.

Yet mental health, and having a positive relationship with an autistic identity, are not usual priorities for helping autistic people. And if mental health issues are mentioned with regards to autism, they are are addressed in a pathological way. In this post I am going to write about my experience as someone on the spectrum who lives with mental health issues.

I have written about my struggle with anxiety in an earlier post. However, in that post I talked about some of the symptoms of how my anxiety manifests. I have never written that extensively about the root cause of my mental turmoil being related to lack of acceptance of my being autistic. Although I come across as a "confident self advocate" when I speak about my life experiences, the truth is that I struggle with deep self-confidence issues, and sometimes actually doubt some of my own advice. There is a "monster voice" in my head that constantly tells me, "I am wrong," or that "I am not deserving of support," and other negative scripts. I constantly say, "I'm sorry" to my family or others whenever I feel that my autistic mind takes over. My monster voice is always constantly bringing me down by saying that I am not "entitled to my feelings because I am autistic," and battles with my positive voice or the voice of confidence. I am so hard on myself and I blame myself for all the challenges that life brings me.

Lately, I have been wondering: how did I become this way, or how did I develop such negative thinking which resembles mental self injury? I then realize that the negative scripts and inner anxiety that I developed in my head today were the result of years of growing up, and slowly realizing that disability is something that needed to be fixed. Unlike the children growing up today with the neurodiversity framework, I did not come of age at at time in which autistic advocates were respectfully regarded as the "true experts."

As much as I hate to blast some of my lovely support people like my therapist or my family members on this blog post, they unintentionally—through no fault of their own—contributed to my negative script that I have for myself. Before I go ahead and critique some of the interventions that I received, I want to be clear that I am thankful that I have gotten interventions that enabled me get to the point where I am today. The social skills, emotional and self-advocacy skills that I learned during my adolescence enabled me to be the strong advocate I am today. But for autism intervention, there is always room for improvement.

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment. This was reinforced through behavioral therapy and the school system. A few examples that I can remember include that I was pressured to join clubs, and also sit with a group of kids because that is how typical high schoolers socialized. I was discouraged from socializing with adults such as the other aides at school, or the computer teacher in middle school, because it wasn't considered appropriate. I was socialized to learn about  the fashion and other interests that teens through social groups that my behaviorist made (e.g. the "cool" or "not cool" chart) in an attempt were to make me "fit in" better.

All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal. Friends were chosen for me, because people wanted me to be more social. I went along with the recommendations of my support people and parents, and pretended to live as a neurotypical, because I thought they knew best. I tried all I could to suppress my natural way of being—at the expense of my self esteem, and acceptance of my unique neurology.

What the people who helped me didn't realize at the time were the future implications of my mental health as an autistic person. This was because their focus was on making me as self-sufficient and socially adjusted as possible, and by the time I reached adulthood nobody ever considered that what they were doing could unintentionally affect my self-identity and self esteem. But all my energy spent camouflaging myself in order to appear "normal" became mentally exhausting. I started second-guessing myself, and internally beating myself up, over minor social infractions. This is a big part of my anxiety in living as an autistic person.

My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people's mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people's insights, feelings, and desires into account, instead of dismissing them.

Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance means helping to create a world where autistic people don't have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it's asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.

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This article was originally published at redefiningnormalayoungwomansjourney.blogspot.com.

Thursday, February 15, 2018

Please Stand By Is Not Harmful to Autistic People; It's Just a Bad Movie

Poster for the movie Please Stand By
[image: Dakota Fanning, a white blonde
woman wearing an orange sweater and lots
of colorful lanyards, as the autistic
character Wendy in Please Stand By,]
Amanda Forest Vivian
adeepercountry.blogspot.com

I usually don’t watch movies about autism, but after being told that [TPGA editor] Shannon would make me a gimlet I dipped my toes into the horrible pool. My limply positive impression of the trailer was borne out by the movie: it doesn’t say anything bad about Autistic people, and the main character Wendy breaks some stereotypes. She is female, can’t live on her own but can talk, and isn’t a genius. I don’t think this movie will harm Autistic people, and I’m grateful for that.

However, it’s still a bad movie that has nothing going for it but a dog in a cute sweater. You can see a dog in a cute sweater on YouTube without having to watch someone pretend to be Autistic by yelling things like, “My mom is dead! That means she doesn’t feel anything anymore!”

Dakota Fanning’s performance was just awful. It came off like she and the director had never seen an Autistic person, but based on something they read they decided that to look like an Autistic person, you should just stand very still and look serious. Dakota didn’t stim or have any physical mannerisms that would have particularly made her look like an Autistic person; she just acted like a piece of cardboard and that was the whole performance. Actors who are playing developmentally disabled characters often get made fun of for acting overly emotional, childlike, or awkward in an attempt to come off as disabled—but at least they’re acting.

It was hard to relate to Wendy because of the performance, but the story was also very incoherent, both in terms of the situation the characters were in at the beginning, and the emotional development I guess they were supposed to have.

This review spoils some plot points, such as they are.

At the beginning of the movie, Wendy’s sister Audrey is making her live in a group home after their mother died. Wendy would prefer to live with Audrey’s family, but Audrey not only refuses, she won’t even bring her baby to meet Wendy. Audrey apparently thinks Wendy is dangerous, and there’s no good explanation given for that. Obviously it’s verboten to portray autism parents in a bad light, but it would make more sense if their mom had raised Audrey with a negative view of Wendy and the movie showed Audrey getting out from under that. Instead, we’re given the opposite impression—that the mom treated Wendy much better than Audrey does. It seems Audrey has a problem with Wendy for no reason, yet she’s supposed to be a sympathetic character.

Since this is the conflict at the beginning of the movie, you’d expect it to be addressed when Wendy runs away from her group home in San Francisco and travels to Los Angeles to deliver her submission to a Star Trek scriptwriting contest. You might think that making this journey would be challenging but empowering for Wendy and everyone would see her in a new light because they didn’t expect her to be able to do this.

But Wendy’s journey isn’t meaningful. The only reason it’s challenging is because a bunch of random obstacles get unnaturally placed in her way. These obstacles mostly fall into two categories:
  1. Almost everyone Wendy meets is mean to her. For example, two bus drivers ignore Wendy when she asks them a question; clerks and cashiers glare at her; and the one time she approaches a stranger and tries to make friends with them, she’s robbed.

    At one point she tries to buy candy at a gas station and the cashier tries to trick her into paying $18 for a $2 bag of candy. If you think about the fact that gas stations have security cameras and they have to count up the register at the end of the day, this is a really complicated way to get $16. It’s like the side characters are contractually obligated to drop what they’re doing and torment the poor disabled girl.
  2. Facts of the universe seem to be out to get Wendy as well. A holiday she forgot means she can’t send her submission by mail; she’s traveling with her dog but he’s not allowed on the bus; she doesn’t have enough money for a ticket after being robbed; and she is completely taken aback when she finds out about these things, even though she was waiting to buy the ticket for eleven hours.
Maybe we were supposed to think it was part of Wendy’s disability that she doesn’t anticipate these contingencies and has trouble adjusting to them when they happen. I would welcome seeing this in a movie, but if that was what they were going for, it wasn’t clear at all.

Instead, it comes off like Wendy (or the movie) doesn’t understand rules and considers them to be an affront. There’s a scene where Wendy passionately argues with a ticket agent that he should give her a $22 ticket for $7.22, because she really needs a ticket; when he doesn’t agree, she sneaks onto the bus. About ten minutes later, another scene happens with the same beats—Wendy tries to get someone to bend a rule for her, apparently thinking that she can sway him with an intense speech; the person doesn’t give in because he’s just doing his job; Wendy shrugs, defies the rule, and gets away with it. It seemed to me that these two scenes were intended to be the most empowering moments for Wendy.

The problem with this is glaring. Autistic people aren’t likely to go around trying to break rules all the time. That’s ... kind of our thing? Didn’t the movie try to hammer this very same fact into our heads by having Wendy write down rules about life in her notebook and wear days of the week outfits? Just a little while ago she had to convince herself it was okay not to shower every morning.

Sure, there are exceptions to every generalization about Autistic people, but let’s be real: the movie wasn’t trying to show a refreshingly un-stereotypical Autistic person who doesn’t care about rules and has an easy time disregarding them. They forgot.

Anyway, the only reason Wendy has a difficult journey is that nearly everyone she meets is awful, and nearly everything she’s doing is against a rule. These problems don’t happen because she’s Autistic, because she lives a sheltered life, or because her sister and staff underestimated her. Anyone would have trouble getting to LA if they brought a dog on a Megabus, got robbed, got … well, I don’t have time to list all the hardships that befall Wendy.

Since Wendy’s struggles aren’t caused by who she is, and they’re not challenging to her specifically because of who she is, they aren’t thematically meaningful and they don’t lead to character development. It is unclear what change the characters are supposed to have undergone by the end of the movie. It’s just bad.

At the end, I guess Audrey is supposed to have learned a lesson about Wendy. She now believes it’s okay for Wendy to meet and hold the baby. Scottie, Wendy’s vaguely defined support worker, has learned that she wasn’t engaged enough with Wendy. At least I think so? I’m just spitballing here.

(I won’t try to make sense of Wendy’s living situation or the services she receives. Her group home for Autistic young adults is called an “Assisted Living Facility”—a name that implies it’s for senior citizens—and Audrey must pay for it out of pocket. Also, Wendy is obviously conserved, but if you think about this for one second you’ll start trying to figure out when, why, how, and who; the conclusions you’ll come to are horrifying; and unbelievably, I think the writers didn’t think about it at all.)

It’s definitely a sign of progress that this movie exists. Like I said, it’s not harmful or insulting to Autistic people, just bad. Objectively, the most offensive thing is how Audrey is presented as a sympathetic character when some of her behavior is flat out evil—but her evilness is mostly due to “fridge horror,” which I think is due to lazy writing.

However, what stuck with me the most was all the mean strangers Wendy met. Sure, people can be jerks, but they were so dedicated about it. In my experience as a young white Autistic woman like Wendy, that just isn’t how people act in those situations. Most people have neither that kind of malice, nor that much time and energy to spare on making a stranger’s life miserable.

If I can make a huge generalization, I think most of the barriers disabled people face in everyday life are systemic, not personal. And when an individual poses a problem to another individual, it’s more often out of laziness or ignorance than it is out of sadism or hatred. Mostly, the universe is indifferent.

Even though I think the movie intended to show a positive message about Wendy’s resourcefulness and independence, they misstepped in the way they portrayed the world outside Wendy’s familiar bubble. In real life people can be helpful, uninterested, actively trying to make things worse for you, trying to help while doing the opposite, sympathetic to your problems but unable to fix them, able to help a little but not very much; and so on.

The thing is that you don’t always find the most helpful people in your biological family and/or care providers. You may find them at school or work, on the Internet, by the side of the road, or behind the ticket counter at a bus station. The same goes for where you find the least helpful people. A stranger may do you harm, but so might your family.

This is an important lesson for anyone, but especially for Autistic people, I think. While I attribute this to bad writing and not to intent, the movie gives the impression that if an Autistic person defies their family and care providers, they will be wandering around the world completely alone with everyone either hurting them, ignoring them, or too incompetent to help them (ask me about the hilarious car accident). Bizarrely, the only stranger Wendy makes a positive, touching connection with is a policeman—one of the characters more likely to be dangerous to her, if this journey were happening in real life.