Saturday, February 17, 2018

Mental Health and Autism: Why Acceptance Matters

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

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.


This article was originally published at

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

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.

Tuesday, February 13, 2018

Parents: Let's Talk About Grief and Disability

Spectrum Disordered

Let's talk about grief.

To be specific, let's talk about a specific way the term “grief” is used: as a suggested framework given to parents to process the news that their child has some type of disability.

I’ve encountered this outlook throughout my life. My parents, by well-meaning professionals, were set up to view my disability as a loss: I was not normal, and would have to fight against my deficits for my whole life. They would not know what my future looked like and could not plan. They should feel Very. Sad. About. This.

Having a grief mindset instilled into my parents was the single most devastating thing that has happened in my entire life. I learned very quickly that I was broken, and that there was something wrong with me. I learned very quickly—and at a very young age—that my parents would have preferred a version of me that did not have a disability, rather than the only version of me that will ever exist—the actual me. How could they not? I overheard countless conversations of how scared they were for me. How I wasn’t normal, and what they should do about that fact. How to fix me.

I’ve been actively involved in autism advocacy for just under 15 years, facilitating support groups, public speaking, ranting on the internet. You may be somewhat aware that the views of autistic adults don’t always align with the view of NT parents of autistic children (surprise). During those 15 years, I’ve also seen tremendous positive change in what people, including parents, believe about autism, but this “grief” crap JUST WON’T DIE. Several years ago I severed ties with an autism non-profit I was a founding member of. The reason? A disagreement about the value of parents “grieving” the autism diagnosis their children had received.

When this disagreement has come up, I almost always get the “parent card” thrown at me: I didn’t have kids, so I COULDN'T understand what it is like to “go through” the experience of parenting a child with a disability. I was told that parents need to “grieve.” That it is an important part of the process that allows parents to “heal.” That “if you have children, you will understand how scary it is to get ‘a diagnosis’.”

On January 12, 2018, my wife gave birth to our beautiful, amazing baby boy, our first child. I had no idea how quickly I would find myself confronting “grief.”

Our boy was born exactly one month before his due date. He was born just before 8:00 in the morning, and it was with indescribable joy that we saw him enter the world. Knowing that the lungs are the last organs to mature, we were overjoyed to hear him cry!

Our baby cried for about five seconds. Then he fell silent, as he stopped breathing.

I watched as the nurse steadily escalated breathing support for my son. I heard the anxiety in her voice as she called for another nurse to assist. I watched his color change. His lips turn blue. I watched muscles pull tight against his chest, but his chest would not compress.

Fear. Fear that resists description. Thick. Heavy. Numbing. Draining. I walked behind my son as he was wheeled into NICU, crying, wringing my hands, feeling helpless. Another family was waiting in reception adjacent to the NICU. I saw their face light up with smiles, then they saw my baby, then they saw me. Their smiles drained. They looked away, a momentary expression of horror crossing their faces. “Please don’t let that happen to us,” they had to be thinking.

In NICU, our baby was stabilized but still struggling. We were informed he needed to be transferred to a hospital across the state, and that a flight for life crew was coming to get him. Our boy was intubated and placed on a respirator. And, a mere few hours after giving birth, my wife was rush-discharged so she could sit on a jumpseat in a tiny airplane with our baby boy, who was covered in wires and alone in a plastic box on a gurney. We had not even had a chance to hold him.

Private flights are apparently how our little man rolls
[image: newborn infant in an incubator, barely visible behind tubes and wires,
inside a flight for life plane, with a medical attendant.]
His plane had no room for me. I had to drive seven hours to get to the hospital. I had been awake for 35 hours straight, and had 20 more before I would see sleep. It felt like everything in my body hurt, my blood, my teeth. Everything humming in pain.

This is the end of the bad stuff. Our baby’s vitals were great on the flight. Immediately after admittance on the receiving end, he was taken off a respirator and began only getting oxygen by CPAP. My wife texted me pictures of her finally holding her baby boy, thirteen hours after he was born. I cried in relief. By the time I arrived, he was taken off the CPAP was and just getting oxygen. The next day he was taken off of oxygen and breathing fully independently.

We had planned for a lot of things, but never this. Life was wonderful, we had our baby. We could hold our baby. Eventually we would leave the hospital and start our life as a family.

On the morning of the second day in NICU, we had the composure to finally discuss what had happened. My wife was not yet aware that our baby had stopped breathing. I told her about the walk down the hallway. Told her what I felt and feared. She told me the first 24 hours of our baby’s life was both the best and worst day of her life, all wrapped in one. We talked about how powerless we felt, how afraid, how unsure and helpless and paralyzed by the unknowns of what would happen and what the future looked like, if there was a future. It was awful.

The neonatal nurse practitioner walked in while we were discussing what had happened. Every day she works, she sees people processing these same experiences. She has had this discussion with thousands of people.

She told us we needed to grieve. Grieve to process what had happened. That our baby did not have a normal birth. That we needed to move through the stages of grief to acceptance. That this would help us.

I was dumbfounded. It was a surreal moment to process that I was indeed a parent, getting the advice I have been told for years I would only understand as a parent.

Bullshit! We have nothing to grieve, as we have lost nothing. The story of our baby entering the world contains an eventful day and the expectation of some epic medical bills. Telling us to grieve takes away our agency. We wanted a baby. We have an amazing baby. Sometimes babies enter the world this way. Nobody did anything to us or stole anything from us. And oh my goodness is our baby amazing! Our baby, a matter of weeks old, is already showing us he is a smartass. He’s going to run circles around us. Our baby will be equally amazing if he has atypical development. He probably will, born to an autistic dad and two older parents.

[image: Newborn baby on its belly, seen from above, lying on a
fuzzy mat on an even bigger fuzzy bear cushion.]
This experience isn’t grief. I’ve talked with thousands of parents of autistic children who are still processing what it means to have an autistic child. I hear expressions of fear. Their roadmap of expectations of what the future holds for their child has been taken away, replaced with uncertainty. Doubt. Worse case scenarios running wild. They experience the exact same types of emotions that we experienced in a very acute, very severe way on our baby’s first day in this world.

We are failing these parents by telling them to grieve. What we need to give these parents is empathy. Their fears need to be acknowledged. They need support to build a new roadmap to process their fears. To move to hope, understanding, and of course, acceptance.

Our autistic community has millions of people who have been through this process, and yet we continue to fail new parents, leaving them susceptible to subjecting their children to harmful sham treatments, to traumatic experiences, to quantifiable harm to their children that they love dearly—chasing that thing that they were told they lost, that thing that snake-oil salesman promise to retrieve—that unfortunate idea of normal.

We can do better.

Friday, February 9, 2018

Despite Best Efforts, the Same Old Autism Narrative Hampers The A Word

The Main Cast of The A Word
[image: A white British boy wearing headphones and looking to the side.
Behind him are grouped five white adults, one white teen girl, & a black woman]
Sarah Pripas Kapit

The most important thing to know about BBC’s drama The A Word is that it both is and is not a story about autism.

On a basic level, The A Word is very much an autism story. The show’s first season told the story of the Hughes family as their young son Joe (Max Vento) was diagnosed with autism. In the second season—the focus of my review—the family continues to navigate life.

Given this premise, it is remarkable how many of the show’s scenes have little or nothing to do with autism. The Hughes family, who live in rural Northern England, have a seemingly unending litany of interpersonal dramas: the marital strife, the conflict between parents and adult children, and other assorted relationship issues. Typically, these conflicts are exacerbated by the characters’ inability to be honest with one another. Although the show is titled The A Word, an equally apt title might be "Neurotypical People Are Bad Communicators."

While I admit that this particular style of family drama is not to my tastes, I appreciate that the show has chosen to include so many subplots not specifically related to Joe’s disability. After all, life doesn’t stop just because one of the children in the family is autistic. So in that regard the show’s willingness to explore other storylines is a strength.

But since my main concern is autistic representation, I’m going to be focusing on that in this review. That’s where the show falters. Although there are some nice elements, overall I found the show’s autistic representation wanting. There are a lot of missed opportunities. While I believe that the show’s producers attempted to present a more positive representation of autism, ultimately The A Word falls flat.

“I’m Autistic, I’m Autistic. Nobody Wants That.”

The first episode of season two opens with Joe repeating these alarming words. Unfortunately, that episode and the subsequent five episodes don’t really challenge this heartbreaking belief. Sure, it’s obvious that Joe’s family loves him deeply. But casual viewers are likely to walk away with the impression that everything would be better if he just weren’t autistic. That’s the great tragedy of the show.

And while this opening dialogue might suggest that the season will explore Joe’s feelings about his disability, unfortunately that isn’t the case. Joe himself often acts as a plot instigator rather than a character in his own right. Through nearly six hours of total screen time, we learn remarkably little about Joe’s own internal life. Even his love of classic rock music—one of Joe’s few characteristics that isn’t directly ripped out of the DSM—seems more like an excuse to play the show’s soundtrack than anything else.

If the show were really concerned with Joe as a character, his love of music would be explored further. How does music influence the way he sees the world? Does he have any interest in learning how to play an instrument? Why classic rock and not another genre? None of these questions are addressed.

Given the show’s many subplots, it is all the more jarring that Joe doesn’t have any stories of his own. I understand that Joe is a young child, so naturally he isn’t going to have the same kind of storyline as the adult characters. But it is profoundly disappointing that the show’s writers seem so uninterested in giving Joe anything of his own—whether that be a real hobby, a pet, or even, yes, a friend. (Surely there has to be another kid in North England who appreciates rock?) These are all things that shape the experiences of autistic children, but are nowhere to be found in The A Word. Given that, The A Word’s main autistic character can’t help but be a disappointment.

The Clichés of Autism Parents

Most autism stories focus heavily on parent experiences, and The A Word is no exception. Joe’s parents Paul (Lee Ingleby) and Alison (Morven Christie) are prominently featured.

Paul and Alison have very different views of Joe’s disability, which frequently causes conflict to erupt between them. In a somewhat refreshing twist on stereotypical autism parent gender roles, Alison is more accepting of Joe than Paul. Although she isn’t always perfect, Alison at least tries to be positive. She forms a relationship with the mother of a young autistic man, and works to help teenaged Mark Berwick (Travis Smith, who is actually autistic) gain admission to university. She speaks frequently of Joe’s positive qualities.

Conversely, Paul is the closest thing this show has to a villain. He tries to get Joe into football (soccer) despite Joe’s obvious lack of interest. He forces Joe to stop rocking, physically manhandling his son in the process. And he constantly says ableist things about Joe. At one point, Paul says “I love Joe, but I hate his autism,” seemingly not recognizing the inherent contradiction to those words.

The show does attempt to demonstrate that some of Paul’s more egregious behavior is wrong, which I appreciate. But there are far too many ableist assumptions that go completely uncontested.

In fact, several different characters suggest that Joe is destined to be alone forever. This includes Joe’s older sister Rebecca (Molly Wright). Although Rebecca is generally portrayed as supportive, in the season’s final episode she laments, “one day, I will be the only person [Joe] has in the world.” Apparently neither Rebecca nor the show’s writer’s can conceive of Joe forming independent relationships outside of his birth family.

It also looks like The A Word is also pushing another harmful autism stereotype: that the stress of parenting an autistic child is so great that it pushes couples apart. At the end of the season, Paul packs his bag and prepares to leave the family. Although I’m of the opinion they’d all be better off without him, it’s still frustrating to see this same old story play out. Having an autistic child does not mean a trip to divorce court is inevitable.

How The Crotchety Grandpa Saves the Show

However, there is one saving grace in the show’s portrayal of family relationships: Maurice Scott, Alison’s father and Joe’s grandfather. Maurice is portrayed brilliantly by Christopher Eccelston (yes, the Doctor) and is absolutely the highlight of the entire show.

Maurice, the family patriarch, is more accepting of Joe than most other characters. Although their relationship isn’t a primary focus, there are several nice moments. In the show’s first episode, Maurice coaxes Joe down from the roof of his primary school—demonstrating an understanding of Joe’s differences that is sadly lacking throughout most of the show.

As a character, Maurice is crotchety, awkward, and hilarious. But beneath all of the grouchiness, he is revealed to be incredibly warm-hearted. I strongly suspect that the show’s writers intended to imply that Maurice is also autistic. Unfortunately, the show never spells it out explicitly. As a result, I fear most viewers won’t pick up on this rather interesting development.

This is a missed opportunity. Maurice proves that autistic people aren’t destined to remain alone forever. His main storyline revolves around his relationship with Louise Wilson (Pooky Quesnel). Although Maurice still grieves for his late wife, who died of cancer several years prior, he and Louise have obvious chemistry. Their budding romance faces a challenge when Louise too is diagnosed with cancer. Propelled by Eccelston’s outstanding performance, this is one of the more engaging storylines in the show.

If Maurice were acknowledged as an autistic adult, the show would go a long way towards dispelling some of the autism stereotypes it perpetuates elsewhere. In real life, it’s very common for adults to recognize that they are autistic only after a child or grandchild is diagnosed. Yet this experience is rarely portrayed on screen. I would love to see Maurice discover that he might be autistic in future seasons, but I fear that the show just isn’t interested in exploring that kind of story.

Locating Disability Politics on The A Word

While the show’s primary focus is family drama rather than larger disability politics, it inevitably takes a few forays into the social context of disability. Most notably, the show features a storyline about Joe’s school placement.

At the beginning of season two, Joe attends his local primary school, where he receives assistance from a paraprofessional. Yet he has struggles, and parents of other kids object to Joe’s presence at the school because they’re ableist jerks.

Alison and Paul struggle with how to deal with the situation, but ultimately decide to remove Joe from the integrated school and transfer to a Manchester school that has a specialized program for autistic children. The reason why they made the switch? “We realized we were getting more out of the idea of integration than he was.” Really?!

Although the show attempts to present a multi-faceted perspective, the clear implication that autistic kids do better in “special” programs is ableist and harmful to the goal of integrated education. The show doesn’t present the downsides of special education programs, namely that these programs oftentimes have subpar academic programs and focus more on student compliance than comprehensive education.

Since Joe’s new school is more than an hour away from the Hughes family home, they must now deal with a long commute. At one point, Alison and Joe even move into Alison’s brother’s apartment on a part-term basis. The show deftly demonstrates the ways in which the separation harms the family, including Alison and Paul’s marriage. But it stops short of recognizing the obvious conclusion: perhaps it would be better for the whole family if Joe could attend the school that’s in his very own neighborhood.

Overall, the show’s engagement with disability politics is seriously lacking. Yet I would be remiss if I failed to mention the fact that The A Word does have two developmentally disabled characters in supporting roles that are played by disabled actors. First, there’s Mark, who plays the drums and wants to attend university. Reading from his admissions essay, Mark delivers a moving speech about why he wants to go to university in an integrated setting. The scene is a definite highlight.

The other character of note is Ralph Wilson (Leon Harrop), Louise’s son who has Down Syndrome. Over the course of the season, Ralph gets a job at Maurice’s brewery, becomes angry when his mother tries to conceal her cancer diagnosis from him, and starts dating a girl who also has a developmental disability. He’s not defined by his disability—he’s just a young man living his life.

Overall, Mark and Ralph are good examples of disabled characters, albeit in supporting roles. Actually, the fact that the show is capable of this makes its treatment of Joe all the more disappointing. It’s obvious that the show is capable of doing better, so why does it resort to so many tiresome stereotypes?

My final verdict: The A Word has some redeeming moments. But overall it is entirely too reliant on harmful stereotypes. Many of these problems are fixable. However, the show’s writers and producers need to take a serious look at how they perceive autistic people and disability politics more generally. Until they do that—preferably consulting with autistic people ourselves—the show is probably just going to continue presenting a narrative we’ve seen many, many times before.

Tuesday, February 6, 2018

What the Neurodiversity Movement Does—And Doesn't—Offer

Emily Paige Ballou

Autistic folk of diverse abilities somehow enjoying each other's company
[image: Three white autistic people. Two adults: Sara Luterman and John Marble,
and one teen, Leo Rosa, hanging out in front of a Hayes Valley coffee shop.]
It has long been a commonplace accusation against the neurodiversity movement that those of us among the autistic community who are neurodiversity supporters comprise the “very high-functioning,” and that while it’s fine for us to say that what we really need is acceptance and accommodation—we simply don’t understand the challenges of the truly disabled.

This accusation is in stark contradiction to the fact that, from its inception, not only did the neurodiversity movement’s values include the most significantly disabled, but that those individuals themselves were among our earliest pioneers. And that going back even further, the self-advocacy movement didn’t originate with the autistic community at all, but rather largely was led by institutionalized people with intellectual and other developmental disabilities.
We’ve also been having this discussion about neurodiversity, along these same basic parameters, for a long time now—with both sides firing back many of the same basic points:
  • Neurodiversity denialists: Neurodiversity advocates are fundamentally different from, and cannot speak for, the "severely affected," e.g., our autistic children who can’t communicate, self-injure, are aggressive, have epilepsy, have GI troubles, etc.
  • Neurodiversity proponents: You cannot actually know the particulars of another person’s disability by how well they can communicate on the internet. Many of us actually experience the same challenges neurodiversity antagonists cite as only afflicting the "truly disabled." We’re not trying to speak for everybody, we’re standing up for everyone’s right to speak for themselves.
We’re going on circles, and recently, I think I might have gotten a clue as to why.

Lately, on Twitter and elsewhere, I’ve witnessed this basic argument take on a new phrasing:  That we have “nothing to offer” autistic people with more significant support needs.

I was confused at first, thinking of many of the initiatives and developments undertaken by members of the neurodiversity and broader disability rights movements which absolutely apply to all of us, from the successful fight for the $10.10 minimum wage on federal contracts to include those employing disabled people in sheltered workshops, to advances in recognition of the rights of all disabled people to live in our communities with support and not in institutions, increased recognition of the right of all disabled students to meaningful inclusion, literacy instruction, and access to AAC.

I also think about how the Autistic Self Advocacy Network (ASAN)—which is entirely staffed by autistic people—has released toolkits written in plain, accessible language on subjects like political participation, voting, advocacy, safety in the community, abuse, and self-advocacy in sexual and romantic relationships. Their work this past year has been instrumental to preserving the Affordable Care Act, and the provisions of Medicaid that allow many autistic and disabled people to receive services and live at home, rather than being forced into institutions, and also in the fight against discrimination in organ transplant decisions on the basis of disability.

I think about how, when parents and families persistently report that they need better respite services, one of the major aspects of the neurodiversity movement’s long-running protest of Autism Speaks is that for all the revenue it takes in from community-based fundraising, it returns extremely little in the form of tangible support to families and autistic people ourselves.

I think about how Neurodiversity advocates plead with autism researchers for more and better research into co-occurring conditions and assisted communication.

These are all issues that absolutely and intimately affect the lives of autistic people who are significantly disabled, as well as those who are multiply disabled. Presuming that neurodiversity critics aren’t simply ignorant of these efforts (though that’s certainly possible), why do so many remain insistent that neurodiversity doesn’t have anything to offer their disabled loved ones?

I do my level best not to make presumptions about other people’s beliefs or mental states, but as I try to unravel what could possibly be meant by this, what I am beginning to suspect people mean when they say that neurodiversity has nothing to offer the severely disabled, or people like their child, is that we cannot make their loved one non-disabled.

To a large extent, they’re right. We can’t do that.

Or, we certainly can’t do it alone. The social model of disability, basically, says that disabled people are disabled not by our physical or sensory impairments, but by the failure of society to accommodate people with those conditions in the same ways as it does people without them. When businesses don’t have ramps, wheelchair users are disabled by lack of accommodation and not just inevitably by their physical condition. It is a massively important concept that underlies a lot of the recognition of disabled people as equally deserving of public access as non-disabled people.

And to be honest, I’ve always found it a little bit incomplete and unsatisfying.

There are aspects of being autistic, for me, that I doubt it’s possible for society to accommodate perfectly. That, even if society did a substantially better job at accommodating autistic people, being autistic would still markedly affect how I live, and will always leave me expending more effort than the non-autistic people around me just to get by. These experiences aren’t superficial, and they are never going away.

I say this not to undermine the importance of the social model to the thinking of the disability rights movement, but to say that I think I understand at least some of what neurodiversity skeptics are trying to convey, when they counter that accommodation doesn’t just solve everything.

I will always be disabled. I don’t see that not being the case within my lifetime. There are, without a doubt, important roles for government, education, technology, and medicine to play in mitigating disability, but I will always be disabled in ways that even perfect acceptance and accommodation probably cannot erase.

So, neurodiversity critics need to understand that we who support neurodiversity aren’t confused about the fact of your child or loved one being really, truly disabled. We know there are non-speaking autistic people, epileptic autistic people, self-injuring autistic people. We know this because many of us are non-speaking, epileptic, and self-injuring autistic people.

Those of us who can communicate on the Internet believe that what we are saying about our own needs applies to the rights and needs of other disabled people, including the children and loved ones of neurodiversity detractors. So when we talk about the rights, acceptance, and accommodation that autistic people deserve, we are not the ones who think those things are only for people like us. 

Those of you who say that your children or siblings would never be able to advocate in certain ways: Maybe. But, thing is, we don’t believe that those ways are the only kinds of advocacy that matter or count.
“When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy ... When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy ... When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy,” -Mel Baggs in “The Meaning of Self-Advocacy,” from the anthology Loud Hands:  Autistic People Speaking
When we say “Everyone can self-advocate,” we don’t mean “All of us can speak in conventional and highly formalized ways in settings that favor a very narrow construction of political advocacy” (although if those settings were more prepared to offer accommodation for significant communication differences, it would certainly help). And we don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Neurodiversity critics say, "our children will never write or speak like you 'high functioning' autistics do." Maybe not. But then again, at least one person who I actually know has, within the space of a few years, gone from being considered incapable of meaningful communication, to authoring her own blog and co-directing a documentary film, after she was provided with the resources necessary for her to do so. So we neurodiversity supporters are not the ones who believe that verbal eloquence is the only form of expression with meaning or value. Your child might never testify in front of Congress, but we aren’t the ones who believe that that makes the rest of their communication unimportant.

You say your children will never go to Harvard or William and Mary. Maybe not, but an elite private college education isn’t the only viable path to a rewarding life (and besides, the first ever non-speaking autistic student just graduated from Oberlin College).

We neurodiversity supporters believe that what someone can do matters. We believe that the way someone can communicate matters.

We also reject the equation that accepting autism and disability means giving up. Research consistently shows that autism acceptance leads to better mental health for parents as well as autistic people themselves. Evidence is mounting that acceptance and accommodation provide a more reliable path to increased capability and independence than fighting autism or disability does. Acceptance isn’t a cure, but it does facilitate recognition and support of abilities that often go unrecognized and under-valued. We are better off when not only our disabilities, but our real abilities, are recognized.

It follows that autism—yes, even involving a significant degree of disability—should not be a reason why we are kept from accessing communication, education, employment, competent medical care, the right to make our own decisions and live on our own terms, friendship, romantic relationships and sexuality, freedom from abuse, or the basic premise of our lives being acceptable.

There is already a history of people trying to eliminate neurodevelopmentally disabled people. It’s not a good history. We can’t make anyone non-disabled—that isn’t what neurodiversity adovcates are offering—but we also don’t believe that being non-disabled is the only right way to be a person.

If you are a neurodiversity skeptic, maybe it looks like, from your end, that we who champion neurodiversity have the luxury of declaring “We’re okay the way we are; we’re valuable to humanity and people like us should exist” to the extent that we don’t seem disabled in the same ways that your loved ones are disabled. Their disabilities are such that we can’t take them away, nor can we make them into people more like us, whatever you imagine our abilities to be.

If I’m even a little bit right, if you recognize yourself at all in this conjecture, then what I want to ask of you is this:

Try to separate autism, or disability, in your mind, from the sense of impossibility of having lives that are rich and complete. From assumptions that people disabled in certain ways only get to have a certain kind of life. Whatever autism looks like for the person you love, disrupt the logic that says that only if they were not disabled in those ways, could they have something of value to contribute, or be entitled to lives of autonomy and acceptance.

You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.

Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.

We just don’t think that that makes disabled lives wrong.

Thursday, February 1, 2018

Autonomy First! Accessing Good Supports Without Sacrificing Your Independence

Spectrum Disordered

We’ve all heard or experienced horror stories about accessing services and supports. Often the idea of receiving services for people with intellectual and developmental disabilities (I/DD), including autism, conjures up images of institutions—visions of Willowbrook. Or, ideas of what is “optimal” for us look like segregated lives, or “intentional” communities where the true intent is to lump us together under the guise of “keeping us safe.” Regularly, the idea of seeking supports to live in one’s daily life carries an expectation that the cost will be any and all independence and autonomy in having positive control over that life.

These fears are rooted in fact and truth, both of how things were and in some cases, continue to be. But that does not mean they are a universal truth! There are a lot of really great disability support providers out there! Unfortunately, there are also plenty of poor ones, and it can be difficult to identify which is which. Hopefully this piece helps with that—to help root out whether a service provider you are considering is going to provide support in a positive way that allows for growth and confidence, or seek to lock down a person’s life.

First, a little about me and where I work. I’m autistic. I live in Western Colorado, where the mountains run to desert. I volunteer as an adaptive ski instructor, I am newly certified as an Person-Centered Planning trainer, I run support groups, do a lot of public speaking, and am dedicated to advocacy for autistic people and the disability community as a whole.

At a party, how can you tell who the ski instructor is?  
Don’t worry, They’ll tell you.
Photo © the author
[image: A snowy forested mountain slope.]
For the past few years, I’ve been employed as a case manager for a non-profit that provides Medicaid Home and Community Based Services for people with intellectual and developmental disabilities (IDD) across Western Colorado. Our service area is larger than the entire state of Connecticut.

In our rural, isolated, rugged (and very snowy) area, we are the sole provider for most IDD related HCBS-based services. We have no institution. We have no ranches thirty miles from the nearest town. We have no sheltered workshops. We have no group homes. Everyone we support lives in their communities—in either their own homes, with family, or in host homes, where a person or family provides 24-hour residential support to the person.

Our Neck of the Colorado Woods
Photo © the author
[image: Snow-capped mountain peaks seen through a forested valley.]

The employment rate for people we support is far, far above the National average for people with disabilities, yet depressingly low compared to the general population :(. The agency I work for is not perfect: We don’t get everything right every time, but as somebody who has experienced the trauma of losing my autonomy due to my disability, I can work for my agency and still look at myself in the mirror.

We reject the notions that institutional living, sheltered workshops, and segregation are anything other than relics of the past; we reject that that these practices serve any needed role, and believe they exist as historical appendages like the appendix in our own bodies. Our agency doesn’t need them, we support everyone, and WE AREN’T SPECIAL OR MAGICAL.

It is worth noting that Colorado is in the bottom five of the 50 states in Medicaid HCBS funding, so we definitely don’t have extra resources that allow us to avoid old-style segregated supports that others defend as “critical” and “necessary.” This is because, believe it or not, providing community based services actually costs less than warehousing people in institutions.

We provide services to live in your own small, snowy community.
Photo © the author
[image: A snow-covered small town downtown street.]

Without any more long-winded intro (my autistic superpower is giving 15 minute answers to 5 second questions), here are a few things I have learned that people should look out for when seeking services. (Note that this is written for an audience of both people seeking services themselves, and family members helping somebody line up support, so my word choice alternates between “you” and “the person.”)

Without further ado, this is my advice for things to notice when looking for service providers, of which I use agency interchangeably.

1) Reject agencies that expect or require the person to turn decision making authority over to them, in the form of guardianship, powers of attorney, or (to a lesser degree) representative payee agreements.

This is a HUGE red flag. If the agency/service provider as a matter of course expects to be given the authority to override the person’s wishes and decisions, they are showing no interest in supporting autonomy whatsoever. For parents of minor children, this can also take the form of the parents being asked to sign over guardianship of the child to the service provider.

A less-extreme variant are service providers that assume a person has a guardian, or they make blanket recommendations that people with IDD should have guardians. I hear parents told frequently to “make sure you have guardianship when your child turns 18 or you will have NO SAY in anything they do!” If a service provider is encouraging people’s right to make decisions be taken away as a blanket recommendation, it is pretty clear they are not interesting in respecting a person’s wishes when providing services.

Representative payee arrangements are similar. A representative payee arrangement establishes that another entity, in many cases the service provider, can manage your Social Security income and use it to pay bills on your behalf. If the representative payee is your service provider, this means they could be using your Social Security income in some cases to pay themselves for services, like housing. This isn’t automatically inappropriate (we provide representative payee services to many people we support) but it should be a CHOICE for the person who best to handle their finances—themselves with or without support, a third party rep payee, or the agency. An agency that is pushy about wanting to handle rep payee duties themselves should be regarded with LOTS of suspicion.

Positive signs to look for: The agency looks to exhaust all other avenues to support a person’s decision making (such as supported decision making). The agency refuses to consider having decision making authority for a person they support vested in themselves.

2) Ask the service provider how they support your rights!

In every state I am aware of, people with intellectual and developmental disabilities have specific additional rights, due to the awful treatment we have been subjected to in the past. By way of example, see this easy-language version of California’s rights for people with IDD.  For your state, Googling “[State Name] rights of people with intellectual and developmental disabilities” should bring up documents reflecting rights enshrined in law for your state.

A service provider should have these rights memorized, should be able to educate you about your rights, should be able to provide you documentation of what those rights are, and should be able to provide you with specific examples of how they uphold these rights and how you can report if you feel your rights are not respected.

Be very concerned if a service provider shows a limited awareness or hesitancy on any part of the above. It is impossible for an agency to respect your rights if they aren’t well-aware of them. If the response you get to this line of questioning is “Oh yeah, we have a handout on that somewhere,” be concerned.

Positive signs to look for: The agency shows a deep understanding of the rights of the people they support, has resources to train and educate you about your rights, encourages advocacy, and has effective processes for you to report violations.

3) For adults, ask the agency about providing supports for adult lives.

Many agencies will talk a good game about how much they care and how hard they will try to support the person to do what they wish to do. But what are they really prepared to do? I’ve found a really good way to “peer behind the veil” is to ask about “adult” support and evaluate the response.

Some examples include asking if a person can be supported to go to a bar and have some drinks while listening to their favorite type of music. Or, that the person wishes to date and would like support to setup and manage an online dating profile.

A bad response is one that makes it clear the provider/agency has not considered the possibility of adults being adults. If a provider is dumbfounded by the line of questioning or indicates they would not support somebody to do “unsafe” or “unhealthy” things that are the full prerogative of adults to do, red flag. The conversation should revolve around what supports the person needs to do what they wish with their lives AND manage potential risks.

A mediocre/poor response is one that shoehorns the person’s interests into “safe” group or segregated activities. Examples would be “We have dance night at the day program site and serve non-alcoholic beer!” or “ You can join our “dating group” with your “peers” to “learn about relationships” and “maybe find somebody!”

A good response to these questions is one that works out logistics, showing the provider is well-versed in real adult-support needs. Does the person have a favorite bar? Favorite band? What online dating service do you use, and what is the best way to support?

4) Watch for possessive language.

Be wary when a service provider uses possessive language towards the people they are paid to support. Some examples are “On this day, OUR people do this activity” or, “We LET OUR folks do this thing this many times a week” or, “OUR guys usually don’t want to…”

There are several This attitude indicates that the agencies views themselves as principal in the power dynamic—that they have the power to “let” people do things, instead of the individual person having authority and agency over the support they wish, and what they wish it to do.

Possessive language perpetuates an “us vs. them” culture, and the idea that people with disabilities can be treated differently than the “rest of us.” It exposes paternal/maternal ideas about having power over somebody.

Possessive language of this type may indicate the agency is structured with more regimented group activities established by the agency rather than the people supported.

Positive signs to look for: The agency focuses the conversation on what YOU are interested in and what YOU want. Discussion should focus around what YOU want to do, instead of what “OUR PEOPLE” do. Discussion of support should be based on your interests and wishes. If you want to join with other people that also want to take an art class, great! If everybody that gets support on a given day is expected to either be idle or take an art class, less great.

5) How does the agency match staff with the person?

A good match between you and the person hired to support you is CRITICAL. Support staff that match your personality result in better services and supports. Better matching helps prevent “getting in a rut” with services. A good match with support staff means it will be easier for you to direct and drive the services you receive, because the person will be more open to respect your wishes.

Conversely, a poor match with support staff makes it tougher for you to assert your authority to drive services. A poor match often makes the support staff unhappy too, resulting in more turnover—putting you in the cycle of repeatedly training people on how to best support you. Worst, a poor fit between a person and their support staff make it much more likely that abuse will occur.

The worst case is no attempt to match. Be wary if a service agency uses a “pool” of people to support you based on who is available. Providing support to somebody is an intimate endeavor. The person needs experience to effectively support you, and needs to develop trust with you. An agency that arranges staffing as if you are a commodity rather than an individual person seeking individual supports should raise concern,

Positive signs to look for: Look for providers that arrange for you to meet and interview the primary staff that will be supporting you. Look for agencies that ask you about your personality and preferences, and provide details of the personality, preferences, and interests of potential support staff. If a new staff person will be hired to support you, will the agency include you in the job interview process? What if you don’t get along with a support staff? Look for agencies that support you to stop getting support from a staff person you don’t like, even if they don’t see the issue the same way.

What if none of the providers in my area have many of these “Positive signs to look for?”

Advocate for change! Talk with your local service providers, and engage them in a discussion of ways they can improve. Many non-profits are looking for board members—apply and drive change from within.

At the Federal level, Medicaid rules require agencies to provide person-directed services, and will shortly require that Medicaid services be selected using Person Centered Planning guidelines, much of which require provider agencies to consider the above issues. Much of this is included in what is referred to as the “Home and Community Based Services Final Regulation,” details of which are available here:

Finally, talk with your State elected officials and advocate for increased community-based support! As mentioned, costs of providing community-based supports are often far less than institutional-based services.  Partner with advocacy groups in your State to educate lawmakers on the benefits of increasing community based services.

Wednesday, January 31, 2018

Please Stand By is a Quietly Subversive Film

Maxfield Sparrow

[image: Twitter exchange: “I want to see Please Stand By but as one on the spectrum I don’t want to be hung up on the attention to detail and accuracy of the portrayal at the expense of actually enjoying the movie.” -@GlennHampson
“Me too. Which is why I can’t wait until Hollywood starts getting that stuff right so I *can* just relax 
and enjoy a film about people like me.” - @UnstrangeMind]

That Twitter exchange sums up how I feel when I watch fictional movies that feature Autistic characters, like the recent release Please Stand By. I want to just sit back and let the experience carry me away to fantasy land like I do with nearly every other movie I watch ... but I can’t.

WWII historians cannot passively watch Enemy at the Gates or U-571, and enjoy them as thrilling drama without picking apart all the inaccuracies. Alan Moore fans cringe while watching film versions of his graphic novels that changed his work so much Moore demanded to have his name removed from the credits.

Likewise, it is impossible for me to just relax and watch Autistic fiction created by non-autistic writers, directors and actors because I cannot turn off the internal critic that sees every misrepresentation and misunderstanding of my people, writ large upon the screen. As a result, I watch autism stories in movies and on TV in three layers simultaneously: political, representational, and artistic.

In the political channel of my mind, I am examining whether the writer, director, actors, and consultants were actually Autistic or not. I am looking at how the storytelling choices of the creative team might increase, or decrease, the stigma we Autistic people live with.

The representational channel of my mind is exploring how well Autistic people were depicted, regardless of who was creating the story I’m watching. Of course it will be easier for actually Autistic people to create a story that represents us well, but I do believe non-autistic people can do a good job if they pay attention to Autistic voices and work carefully.

The artistic channel of my mind is that part of me that would have just been sitting back and enjoying the ride if I were watching almost any other movie. When I can easily suspend my disbelief, and just enjoy a movie as a work of art and entertainment without interference from the political and representational channels of my mind, this channel carries my entire impression of a film.

So this review of Please Stand By reflects the way my mind splits into those three channels when I watch autism fiction. I’d like to start with the artistic channel because it’s the simplest to talk about: Please Stand By was cute and fun. It was a little less about Star Trek than the trailer suggests, but there was still a lot of Star Trek content, including that iconic moment when Patton Oswalt’s character has a short conversation in the Klingon language with Dakota Fanning’s character. I warn you, though, that the fanfic moments in the film comprise less than a quarter of the overall movie. If your only reason for watching it is because you are a Star Trek fan, you will find it a quirky curiosity only worth adding to your collection for the sake of completion.

Please Stand By had funny moments, sweet moments, I-really-hate-that-character moments, and a couple of touching moments. Stripped of political and representational significance, I see it as a fun, lighthearted “date movie.” But viewed through my two other lenses, Please Stand By is much more than twee, feel-good entertainment.

The movie is about Wendy, a 21-year-old Autistic woman who lives in an unbelievably spacious and well-appointed group home with the euphemistic name of the Bay Area Assisted Living Center. Wendy loves knitting, her little dog Petey, and Star Trek. The movie opens near the end of Wendy’s intense focus on writing a Star Trek script for a Paramount contest, so Wendy’s passionate interest in Star Trek is on high during the eventful few days of her life depicted on screen.

I watched Please Stand By three times through, as well as re-watching a few select scenes. While immersed in the movie, I found my opinion of it shifting with each viewing. My thoughts and opinions about the movie continued to percolate and evolve even after I finished watching, as I played through the movie’s messages in my mind. As a result of such careful scrutiny and digestion, I have come away with the opinion that Please Stand By is a positively subversive film that will help reduce the stigma Autistic people live with, through its subtle storytelling.

The film clearly demonstrates the dehumanizing injustices Wendy faces every day without being “in your face” about the fact that they are injustices, or dehumanizing. Unlike many films and TV shows that try to spoon-feed Important Messages and Information to the viewer, Please Stand By artfully arranges realistic situations, then leaves the viewer to connect the dots herself. While Wendy lives in a comfortable home with Scottie, a support worker who speaks to her in a gentle voice and helps soothe Wendy through a meltdown with her calming phrase, “Please stand by; Please stand by,” Wendy is simultaneously subjected to the world’s consensus opinion of her incompetence, and repeated discussions of what a burden she is.

Scottie takes good care of Wendy’s physical needs and helps Wendy structure and organize her life, but also insists on frustrating and painful training in things like sustaining eye contact or something called “names and places” that neither Wendy nor Scottie enjoy but “has to be done” because it’s one of the mandated things that Autistic clients must study.

And while it’s clear that Scottie cares about Wendy, she is also seriously failing as support staff because she knows next to nothing about Star Trek, Wendy’s greatest passion in life. Scottie makes sure Wendy gets undisturbed writing time, and has taken care to add a daily Star Trek episode to Wendy’s schedule—but Scottie doesn’t even know what a Tribble is, and can’t keep Star Trek and Star Wars separate in her mind. Scottie is working to bring Wendy into alignment with Scottie’s understanding of the world, but has not done nearly enough to enter the world that is most important to Wendy.

And Wendy trusts Scottie, but resents the life that has been shaped for her. Wendy wants to meet her infant niece, Ruby. She wants to return to the house she grew up in. She wants to set her own schedule, and not have to battle her home's four other residents for access to shared resources. Wendy wants to live her own life with her own choices in her own space. It doesn’t seem too much to ask. But while Wendy is portrayed as having “made a lot of progress,” she is not even permitted to cross Market Street by herself, let alone be trusted to be safe around infants like her niece, or responsible enough for supported independent living and making her own decisions about the course of her life.

Early in the film we witness Wendy having a meltdown. It was hard for me to watch. It was fairly realistic, and one thing it showed was that Wendy is not violent. Yes, her sister Audrey got hit in the face—but it was because Wendy was hitting herself in the head and Scottie slipped while trying to restrain Wendy, causing her hand to fly into the sister’s face. Audrey had been closing in to help with the meltdown, despite being the source of Wendy’s distress as well as seeming to know even less about how to help Wendy than Scottie did. (Scottie did help Wendy to calm down, but I was disturbed to see her continuing to restrain Wendy long after she had stopped hitting herself.)

The meltdown served another purpose, further contributing to Please Stand By being a subversive film. Not only did it show that Wendy would only harm another person through someone else’s accident, not her own choice—but it showed Wendy melting down over matters that just about anyone would recognize as huge, valid, serious issues. So many movies depict us Autistics melting down over things that are serious to us, but intentionally chosen as issues that seem trivial and pointless to many non-autistic people. But Wendy was upset about huge, valid, serious issues for anybody experiencing them: having her home taken from her, at having no choice about how she gets to live her life, and about not being allowed to meet a new family member she clearly adores. While someone not used to thinking about autism issues might overlook this incident on a conscious level, Wendy’s meltdown was understandable.

On the one hand, it stings that our trauma is only viewed as legitimate when it lines up with neurotypical ideas of trauma, but from a political perspective it is so important and validating that Please Stand By chose a meltdown scenario that pretty much any viewer is going to take seriously. Helping the viewer to take Wendy seriously is subversive.

Another subversive element of Wendy’s character is how sweet, gentle, harmless, whimsical, and delicate she seems. She was clearly written and cast for the audience to love. Even more important than her adorably quirky appearance is her stainless steel personal strength. There are so few representations of Autistic women to start with. I am grateful that the playwright who began this story started with his one-act play chose to portray an Autistic woman with such  power and persistence. While there are aspects of Fanning’s performance as Wendy that feel a bit strained, overall her representation of feminine autism is positive and valuable.

Wendy’s character was intended to be a woman from the very first moment she emerged as a story seed in writer Michael Golamco’s mind. In a recent interview, the author notes that the kernel of inspiration for the story came from a 2007 New York Times Magazine article about Autistic women. Golamco pulled together what he learned from that article and his own love of Star Trek and life as a writer. While probably not intentional, the heavy emphasis on Star Trek in the storyline is another subversive element, just like Wendy’s charismatic presence and the large number of established celebrities in the cast. Many people who would not necessarily have chosen to watch a movie about autism will be drawn to Please Stand By because of the Star Trek content. These people will enter the theater to hear Klingon dialogue and leave the theater with a fresh view of the power of following a passionate dream and new respect for the, perhaps unexpected, competence an Autistic person can display, even while being dismissed by others.

One of the most common complaints about representation is how often Autistic people are portrayed by non-autistic actors. In fact, other than documentary films, I can only think of one Autistic character portrayed by an Autistic actor: Christopher Boone, in the play based on the novel, The Curious Incident of the Dog in the Night-time, who has been portrayed by Mickey Rowe. I can only think of three other famous Autistic actors—Dan AykroydDarryl Hannah, and Anthony Hopkins—and none has yet portrayed an identified Autistic character. (Although, in fairness, Wendy is not officially identified as Autistic, either. It is quite clear that she is Autistic and Golamco says that he wrote her as Autistic, but the word “autism” appears nowhere in Please Stand By, for whatever reason.)

While Please Stand By did not cast an Autistic person in the role of Wendy, it is politically important that there are four Autistic actors in the film. These actors appear in the credits, and if Please Stand By is covered by SAG-AFTRA (I’m not sure whether it is or not) that makes those actors eligible for their Screen Actors Guild cards, which opens many doors in the world of acting. Additionally, their professional work helps others in Hollywood to recognize that hiring actually Autistic actors is a possibility, and the work of those actors—Lexi Aaron, Dominique “Big D” Brown, Brittanie Sanders, and Cindy Miyashiro—could help to open the door for more Autistic actors in the future.

A California organization called The Miracle Project, also the group behind the documentary Autism:The Musical, helped these four Autistic actors. The Miracle Project supports Autistic actors with classes, performances, and more. While the four Autistic actors in Please Stand By only had small roles, they are helping to move Hollywood into the 21st century with respect to the importance and value of Autistic actors in the entertainment industry. The Ruderman Family Foundation reports that while 20% of the population is Disabled, only 2% of television characters have a disability. Moreover, 95% of those characters are portrayed by non-disabled actors. The situation in Hollywood is similar.

We’ve got a long way to go with the politics and representation of Autistic people in movies and television, but watching Please Stand By I couldn’t help notice how far we’ve come since the days of Rain Man. The film is operating on multiple levels and the fact that it manages to come across as “fluffy and fun,” while carrying some very serious messages to viewers, benefits Disability representation in proving that a movie can address serious issues while maintaining general appeal.

One example of the multiple levels the movie is operating on is that Scottie seems kind, caring, and supportive but the viewer gradually realizes she is part of an entire system holding Wendy back from becoming everything she could be. When Wendy breaks the rules and crosses Market Street for the first time, we see a noticeable change in her character. She has taken the first step outside the safe little prison that has been built around her and begins to take charge of her own life. Crossing the street is a simple act for many people, but when Wendy does it, she is kicking loose bars out of her cage.

When Scottie finally figures out where Wendy has gone, she sets out in pursuit. A scene in which Scottie arrives at a hospital just after Wendy has slipped away is telling: When Scottie becomes upset and starts shouting, a hospital administrator treats her exactly the way Scottie had treated Wendy earlier in the film when Wendy didn't want to study “names and places.” The irony seems lost on Scottie, who seems to feel it’s okay to treat Wendy in ways that Scottie, herself, feels disrespected and violated by. Later, though, Scottie quietly confesses to her teenage son, “I think this is my fault.”

And it is.

It’s not entirely Scottie’s fault that Wendy has run off, but it is Scottie’s fault, and Audrey’s fault, and the fault of the entire system behind the group home, and the eye contact training, and the assumptions of incompetence, that lead authorities to believe that Autistic people cannot engage in supported decision making but must have the details of our lives managed for us by a non-autistic majority, “for our own good.”

I hope you will watch Please Stand By. We need to support films like this so that more films like this (and films even better than this one!) are made. We need to send a clear message that we applaud the positive representation and want to see more of it. And we need to speak about what we liked and disliked about the story and its implementation so that we can help to shape future films to include more Autistic actors in bigger roles, more Autistic writers and directors, more positive representation of Autistic lives, more paid Autistic consultants working in movies and television, and more messages about the value of Autistic lives. Oh, and more Klingon. The world definitely needs more movies with Patton Oswalt speaking Klingon.

Live long and prosper.

Monday, January 29, 2018

How Does The HCBS Settings Rule Affect Housing and Day Program Rules and Rights?

The Mushroom Hut
Painting © Tracy Booth | Creative Commons/Flickr
[image: Painting of a tiny home with a red roof with
white spots, and a lantern, under a crescent moon]
Many of our U.S.-based community members, including parents and caregivers, want guidance and clarity about how the impending Home and Community Based Services (HCBS) Settings rule will affect both adult housing choices and adult day programs.

So, we spoke with policy expert Julia Bascom, Executive Director of the Autistic Self Advocacy Network, who explained in plain conversational language how exactly the new HCBS Settings rules will affect housing options, how some common misunderstandings about the rule happen, and why the rule is essentially about trying to ensure adults with disabilities have the same basic rights as non-disabled adults do.

Thinking Person's Guide to Autism: Why was the rule enacted in the first place?

Julia Bascom: The HCBS Settings Rule sets ground floor, baseline standards for what qualifies as home and community based services (HCBS). Unlike institutions, which have had basic rules to adhere to for decades, these standards have actually never existed in an enforceable way for HCBS. This has contributed to the problem we're all very familiar with, where "community services" like group homes or day programs can end up being mini-institutions. The settings rule is trying to fix that.

This is important, so I want to dwell on it for a minute. Right now, if someone is on Medicaid and has high enough support needs to qualify for services, they are entitled to receive those services in an institution. That entitlement means there isn't a waiting list—if you need services, you can get them right away, as long as you are willing to give up your freedom and your life in the broader community.

And that's an unacceptable trade-off to ask people to make. By their nature, institutions are extremely restrictive settings. People living in institutions don't get to make their own choices. They have to live by the rules, schedule, meal plan, and decisions made by the instruction. They are segregated and isolated, and that makes them less safe—institutions are hotbeds for abuse and neglect.

In contrast, decades of research shows that people with disabilities living in the community make more choices for ourselves, have a better quality of life, are safer and more included in our communities, live longer, and maintain and develop more skills—and this is true regardless of how disabled a person is or how intense our needs are. Community settings are vastly preferred by people with disabilities and our families, and over the last three decades, there's been a huge push to move people from institutions into the community.

But Medicaid rules haven't kept up with that progress. For example, even though there's no waiting list for a spot in an institution, states are allowed to have wait lists for HCBS. These wait lists can last years, or even decades in some states. So if someone chooses to receive HCBS, they have to waive their right to receive services in an institution (that's why these services are often called "waivers") and then spend years foregoing ANY services while they sit on a waitlist. And right now, over 600,000 people with disabilities and families have made that choices and are currently sitting on a waitlist, with no services, waiting for a spot to open up. That's how popular these services are. That's how badly people with disabilities, including people with the most significant disabilities and our families, want to live in the community.

But prior to the rule, something hideously unfair kept happening. A person with a disability would choose community instead of an institution, spend years on a waitlist without any services, finally get a waiver slot—and end up in a group home or a day program that was exactly like a miniature version of an institution. People theoretically living in the community nonetheless had no choice or control over their own life. They were still segregated and isolated from people without disabilities.

And that's where the HCBS Settings Rule comes in. The rule doesn't close any institutions. If someone wants to live in an institution, they still have that choice. What the rule DOES do is say that if a setting is getting paid to provide home and community based services, they need to actually provide home and community based services.

The new standards in the rule are wild [sarcasm] things like: you can't withhold food from people. The person with a disability gets to make our own schedule. We get a choice between living with other people with disabilities, or living in our own home—and if we chose a group setting, we get to chose our roommate, decorate our room, and lock our door. The rule says we have rights that non-disabled people get to take for granted. That's all. That's the whole thing.

It's also important to point out that it took years to make this rule. The federal government received thousands of comments from people using services, providers, and families, and they had to respond to each and every one. The final rule is a compromise. It sets minimum standards, and it doesn't go as far as self-advocates wanted. Having the right to lock your door or eat when you're hungry isn't radical stuff—it barely scratches the floor of what disabled people deserve. But because the process was so comprehensive, and because the rule does for the first time establish that people receiving HCBS have basic rights, it's supported by the vast majority of national organizations representing people with disabilities and our families, along with hundreds of community providers. It's just a start—but at least we're starting.

TPGA: How long do states and providers have to come into compliance with
the new rule?

Bascom: States and providers have until 2022 to come into compliance. Since the rule was released in 2014, that means they'll have had a total of eight years to get up to speed.

TPGA: Will all adult programs have to change?

Bascom: No. If a community service is good—if it respects people's rights, supports our inclusion in the community, and makes sure that people with disabilities are in charge of how we spend our day—it won't have a problem. If it's not good, but wants to be better, it won't have a problem. If a setting is really dedicated to keeping people with disabilities segregated and subordinate, then it will have to decide to either change, or to find another source of funding.

There's a very limited amount of funding for HCBS services. That's why we have waiting lists. The point of the settings rule is to make sure that those limited dollars are being spent on services that really are home and community based, not services that are just institutions with a new coat of paint. If a setting doesn't meet criteria for HCBS, it can look for institutional funding, or it can switch to private pay. Or it can treat the people it purports to serve fairly. It's up to them.

TPGA: How does this affect adult programs that appear institutional in nature?

Bascom: One of the things that we really like about the rule is that the rule is based on the experiences of people with disabilities living or spending their days in a given setting. So it doesn't do things like set limits on the size of a setting by itself. At the same time,  the rule recognizes the decades of research and lived experience which show that certain types of settings—large congregate settings, or settings that clump a lot of disabled people together and provide a lot of services in one place—are more likely to function as an institution that not. The rule calls these settings "presumptively institutional" settings, or "settings that isolate."

But these settings still aren't banned by the rule! States have a choice. A state can decide to look at settings which, on their face, seem institutional, and give them a chance to prove that they are in fact HCBS. They have to use a process called heightened scrutiny, in which the setting demonstrates that it meets all the criteria. If a setting can prove that the people living there really do keep all their rights, and really are integrated into the broader community, it can keep its HCBS funding. Since the standards are so basic—again, can I eat when I'm hungry, can I lock my door, can I spend my time how I want—this should be pretty easy to prove. If a setting can't meet that baseline, it has no business calling itself HCBS.

TPGA: Does this mean that all clients of adult programs will have to adhere to the same rules without exceptions? What about individualized and competing access needs?

Bascom: Nope! If someone has a disability that means that a certain part of the rule won't work for them (e.g., unrestricted access to food for someone with Prader Willi,) the rule has an exception process that can be done as part of person-centered planning. The flip side, though, is that my exception can't impact someone else's services. If I need to eat on a specific schedule, for example, my provider is no longer allowed to make the whole group home follow that schedule. It's all about what I as an individual person need.

TPGA: How are HCBS rules affecting adult day programs different from those affecting residential programs?

Bascom: There's more clarity around residential services than day services right now. States have a huge amount of flexibility under the rule, so some day programs in progressive states are changing how they operate, to ensure that people set their own schedules and don't spend all day in a facility. By 2022, all adult day programs will have had eight years to figure out any changes. And again, good programs that work to integrate people into their communities and either find employment or do other things during the day that are meaningful to them, won't have to make any changes at all.

TPGA: So why do you think some people might be opposed to the HCBS rules for adult day programs?

Bascom: I think there are a few different reasons. A lot of people are just confused, because there's so much misinformation flying around about the rule. There are also people deliberately spreading this misinformation, and they tend to have a couple different reasons.

First, there are providers who have a vested financial interest in operating miniature institutions and calling it HCBS. There are actually a lot of rules about running formal institutions—there are basic standards you have to follow, licensing regulations, all of that kind of thing. But those rules haven't really existed before in that same way for HCBS. That means a lot of these providers have been able to run mini-institutions for decades with virtually zero regulation or oversight. They aren't wild about changing. This is, bluntly, too bad.

There are also a lot of wealthy families who want to build new institutions. They don't like to call them institutions—they call them farmsteads, or intentional communities, or campuses, or villages. But these are all literally what the first institutions looked like, and they are still large settings that lump a lot of disabled people together and segregate us from the broader community. It's a fresh coat of paint on a bad idea. But these families want to build them, and they've invested a lot of money in their construction, and now they're worried that Medicaid won't pay for services in these settings. So they oppose the rule.

There are also people who are worried that their family member can't live in the community. We know that community living is actually possible and beneficial for everyone, even for people with the most significant disabilities, but I think some families are afraid to take the plunge, especially if they haven't seen a lot of successful examples of people like their family member living good lives in the community. These families aren't helped by misinformation—they need concrete examples of how this works, like those in parent/professional Dr. Clarissa Kripke's article on successful community living for people with developmental disabilities.