Friday, October 20, 2017

The Best Bar Mitzvah Boy

Todd Drezner

Dov and Sam | Photo © Brad Alpernin
[image: Two white Jewish pre-teen boys, wearing suit jackets and ties
at their Bar Mitzvah service, posing together and smiling for the camera.]  
We told our son Sam that there is no applause at Bar Mitzvah services. But when he finished his speech, a wave of clapping and cheering burst forth from the crowd—a genuine display of emotion that no religious custom could have stopped.

There was a lot of feeling behind that applause. Love, certainly. Appreciation of a job well done. But also amazement. It’s probably safe to say that not everyone in attendance had expected to see what they’d just seen. And here is where the story gets interesting.

But first some background. A Jewish boy becomes a Bar Mitzvah when he turns 13 (a Jewish girl becomes a Bat Mitzvah). Traditionally, the Bar Mitzvah leads a Shabbat (Sabbath) service, the heart of which is when he chants from the Torah (one of the five books of the Old Testament).

As anyone who’s ever done it can tell you, reading from the Torah is tricky, even if you’re fluent in Hebrew. Unlike standard written Hebrew, the Hebrew of the Torah has no vowels. Without them, you can’t know simply by looking at the words how they’re pronounced, or in some cases what words they are. Thus, the only way for a 13-year-old to “read” the Torah is really to memorize it.

But even if you’ve done that, you’re still not done. Because the Torah is not just read, but rather chanted using a complicated melody with origins going back centuries. Again, the best way to do it is to memorize it. And it helps if you can sing.

If you were to design a kid with the characteristics needed to perform well under these circumstances, you would probably wind up with someone very much like Sam. He can recite entire Pixar movies from memory, along with various Kristen Wiig sketches, iPad puppet shows of his own creation, and conversations that happened years ago. Five minutes of Torah was a breeze.

Then, too, Sam has perfect pitch and is a great mimic: he can even match pitch with our bathroom fan and tell when it’s malfunctioning. Once he heard the Torah portion chanted correctly, he was able to chant it note-perfectly.

So my wife and I were confident that when it came to the heart of the Shabbat service, Sam would be in good shape. But still, it would not necessarily be easy. Sam had no real experience speaking in front of a large group. He has significant anxiety. His focus and attention can wander easily, and it wasn’t clear how well he could maintain his concentration over a 90-minute service.

But my wife and I knew that when we set a goal for Sam—or he set one for himself—he could achieve it as long as he had the necessary support. The key was to start early, and to find people who could help Sam learn what we knew he could learn.

Fortunately, there were lots of people who could help.  Most important was the fact that Sam would share the service with his cousin Dov, who lives with my sister and her husband a mile away from us in Brooklyn. From the time they were toddlers, my typically-developing nephew was a bit of a Sam Whisperer. When they were two, he would look over at Sam in his car seat, turn back to us, and say matter of factly, “Sam’s not talkin'.”

And ever since then, Dov has been exquisitely sensitive to Sam, knowing not only when talking was too much, but also how to draw Sam out of himself and into the world. Having Dov co-lead the service meant that Sam wouldn’t have to do everything. More important, there would be someone there whom Sam loved and trusted, and who could gently direct his attention to where it needed to be. Of course, my nephew had his own Torah portion to learn and speech to give, but the kid is talented. And he had backup from his younger sister, Sam’s other cousin, who’s also deeply practiced in the ways of Sam, and was sitting in the front row. They were our aces in the hole.

So we were confident Sam could do his part to lead the service. But would it mean anything to him? With all the logistics that come with raising an autistic kid—finding the right school, setting up therapy appointments and swim lessons, building a community that would love and support Sam as he is—we had neglected the small matter of providing Sam with a formal religious education.  We observed major Jewish holidays and occasionally went to synagogue, but to the extent that Judaism is the story of a people, it was a story Sam didn’t know.

Fortunately, a member of our synagogue had a lot of experience providing Bar Mitzvah tutoring to kids with disabilities. We went out for coffee with him. “A lot of parents tell me they don’t think their kid will be able to do it,” he told us. Knowing a set-up when I heard one, I joked, “I don’t think our kid will be able to do it.”

But, as we already knew, he could. Sam and his tutor started meeting in March of 2015, a full two-and-a-half years before the scheduled Bar Mitzvah service. Together, using unusual combinations of action figures from Frozen, Monsters Inc., and The Incredibles, they acted out stories from the Bible, a process they would use to make their way through most of the Old Testament by the time of the service. Sam is not a rabbinical scholar, but he now knows his Abrahams, Isaacs, & Jacobs, and his Sarahs, Rebeccas, Rachels, & Leahs.

And the tutor started teaching him Hebrew. Sam picked it up with the same hyperlexic ability that had him reading English at three years old. We were just about set.

The last element of the service was perhaps the most challenging. A Bar Mitzvah gives a “D’Var Torah,” a speech in which he’s supposed to offer an interpretation of his Torah portion. Because of Sam’s language processing delays, he would have trouble understanding his portion. And writing did not come easily to him.

Together with our rabbi, we decided that Sam would offer a few basic thoughts about his Torah portion, but would spend the bulk of his speech focusing on what he loved about his family members who were there to support him.

Though we helped him a bit with the writing and the organization of the speech, the thoughts were Sam's. We often remind others that although Sam presents as a younger child because of his language processing delays, he has as full a personality and thinking as complex as any other young teenager’s. We worked with him to help shape the thoughts we already knew were there. He spoke in an Irish accent and a French accent, to mimic characters that his beloved uncle created for him. He told his cousin that he’s loved him for as long as he can remember, “And I can remember a lot.” When he listed the reasons why he loves me, he started with, “Daddy, you do my laundry.”

Sometimes, he didn’t realize how funny he was being. (I think he’s honestly very happy that I do his laundry.) But for our guests, who had already seen him chant his Torah portion and were now laughing at every line, he was a revelation. The applause washed over him like the climax of an after-school special.

What, exactly, was that applause for? Had they doubted him? In some ways, the reaction of our guests wasn’t a surprise. I have a large extended family, and when we’re together, it’s a bit overwhelming for Sam. He tends to withdraw in those situations, and so many of our guests had only seen him spend a lot of time pacing back and forth at the edges of various ballrooms. They were surprised to see him thriving as the center of attention. And even among our friends who had spent more time with Sam, the reaction tended toward amazement. Sam had outperformed expectations.

The fact is, very few people at the service understood Sam’s capabilities as well as my wife and I did. We always believed he would do well because we knew he was capable and had worked hard. But to our guests, it may have seemed like his performance came out of nowhere.

To some extent, this demonstrates the continuing thrall of the word “autism.” All of our friends and family know of our commitment to autism acceptance, and to a person, they support it. Indeed, many of them have been vital to helping us build a community that is welcoming to Sam. And yet, even having done so, they may have been surprised to see him excitedly greeting guests outside the synagogue. They may not have been prepared to see him seeking out eye contact with each person he mentioned in his speech. No one necessarily doubted an autistic person could lead a Bar Mitzvah service. But perhaps no one expected him to enjoy it so much.

As autism has become more common over the past 20-30 years, autistic people and their allies have tried to move beyond “awareness” to “acceptance.” But there’s still not a lot of talk about “joy.” Too often, there’s a misconception that acceptance means only accepting behaviors that are considered non-standard, or accepting that an autistic person may not hit the same milestones as a non-autistic one. Yet acceptance can lead to moments like Sam's Bar Mitzvah service.

Sam chanted from the Torah so well because of the strengths he derives, in part, from autism. He gave a speech about all the people he loves because they accept him as he is, rather than trying to change him. The end goal of acceptance isn’t a life that you trudge through pushing away your wish that your kid could be typical. Rather, the goal is to find the joy, and to celebrate your child, as he is.

Tuesday, October 10, 2017

Hard Truths: Disability and Poverty Go Hand in Hand

Maxfield Sparrow

Photo © *Hajee | Flickr/Creative Commons
[image: Person with black hair and a blue coat. They are holding a hand-lettered
cardboard sign over their face. Sign reads, "VERY HUNGRY PLEASE HELP!"]
I am not the only Disabled person economically struggling, as disability and poverty go hand in hand. Why is that? The answer is complex, since disability leads to poverty and poverty leads to disability. It's a vicious cycle and sometimes a downward spiral, leading people to lead lives perpetually circling the drain, always on the edge of annihilation.

Let me see if I can untangle some of it for you.

“You’re dooming yourself to a hand-to-mouth existence.”

That’s what my parents told me when I dropped out of high school. And they were right.

Well, they were half-right, anyway. I have spent the last three decades living hand to mouth, but it is not a fate that I brought upon myself. I am Autistic, but that is only part of the picture. I am multiply Disabled and the requirements and limitations of my various disabilities bounce off each other in difficult and sometimes devastating ways.

These cycles of disability and poverty can go all the way back to childhood. Starting life in poverty is an immediate disadvantage in life. That’s probably obvious, right? Less money often means poorer health coverage and poorer nutrition, which can cause additional health problems for the rest of a person’s life, even creating new disability where none was to start with.

A family without financial resources is not able to help their children launch into the world as successfully as a family that can afford to help young people with their start in life. Fewer resources mean less attention paid to mental health needs. A family with one or more disabled members will have additional costs. And expenses considered burdensome for a middle-class family can be the difference between life and death for a poor family.

A disability present from childhood can mean less access to a quality education; poverty also lowers access to such an education. Disability and poverty together can block a child’s future earning potential entirely. But the cycle of disability and poverty do not stop at childhood’s end. Nor does growing up in a middle-class home necessarily shelter a disabled adult from falling into and/or failing to climb out of poverty.

The poverty rate for disabled working-age adults in the United States is more than twice as high as for non-disabled adults in the same age range. A September 2009 Center for Economic and Poverty Research report on poverty and disability found that half of all adults who have experienced at least one year of poverty are disabled, two-thirds of those with longer periods of poverty have a disability, and people with disabilities are significantly more likely to experience homelessness, food insecurity, and inadequate health care when compared to non-disabled people with the same income.

How can it be that disabled people have more serious markers of poverty at the same income level as non-disabled people? Literally, our poverty is “more poor.” One reason is that we have higher needs than most non-disabled people. Some of us need medications or medical devices that are not covered by Medicaid or other insurance. Some of us require special diets that cost more. Some of us need apartments on the bottom floor, so we can access them, or on the top floor, to mitigate sensory sensitivities, and have to pay more for an accessible apartment (and “accessible” does not always mean the same thing from person to person, so many disabled people have access needs that are not well understood or supported, even by ADA laws meant to protect us),

A 2012 study, published by the National Disability Institute, found that 70% of people with disabilities said they “certainly or probably” could not come up with $2000 in an emergency while only 37% of people without disabilities said the same. Without a savings cushion, an annoyance becomes expensive, and an expense becomes deadly.

Not so long ago, I looked at my tax records and saw that I have a lifetime earning total of $17,358. Since that sum covers the years from 1985 through 2016, it averages to $542 per year. That’s not a lot of money.

How have I lived on an average of $542 per year? Some of that time was spent institutionalized. Much of it was spent homeless. I’ve eaten at soup kitchens and out of dumpsters. I’ve slept under bushes and in public bathrooms. I’ve escaped the heat of summer and the cold of winter in shopping malls and libraries—often even when I had a place to live, because when I have had a roof over my head, it’s often a roof that leaks. I’ve lived without heat, running water, or even panes of glass in the windows.

And much of that substandard housing was only made possible because I have been receiving Supplemental Security Income (SSI) for disability since 1994.

“So you shouldn’t have dropped out of high school,” you say. “You should work harder. You should get a better job. You should try harder. Give up that dream of supporting yourself through writing and go get a real job.”

Let me see if I can untangle some of that for you.

I was forced out of high school because no one was protecting me from severe bullying that included having rocks thrown at my head and bleach thrown on my clothes. I had books and papers stolen. Bullies slipped laxatives into my food, so I stopped eating or drinking at school. And I was pushed into isolated building niches where I was sexually molested.

This is why I am so stern about the incredible burden of bullying that Autistic students endure. Bullies stole my guaranteed education and my future earning potential from me. Bullies stole the life I might have had, and set me on this hand-to-mouth path, one I have been fighting for three decades to escape.

As I detailed in my book, The ABCs of Autism Acceptance, CBS reports that 63% of Autistic children have been bullied, and they are three times more likely to be bullied than children without autism. Time Magazine reports a 46% bullying rate for Autistic children and cites that figure as being nearly five times higher than non-autistic classmates. And the bullying Autistic students face is particularly brutal, including documented cases such as being covered in human excrement, choked and threatened with a knife, or having both hands blown off by explosives.

If we want to fight the life-long poverty so many Autists live with, we cannot ignore the role that abuse from both age peers and adults plays in setting us up for ongoing poverty, whether due to not completing our educations, or mental distress and complex PTSD from being targeted by bullies, or both.

Mental health issues are huge when it comes to keeping disabled people in poverty. Some people’s primary disability is psychiatric, while others develop psychiatric disabilities as a result of the poverty and isolation brought on by living with another disability in a society that does not adequately address the needs of disabled adults.

Those of us with developmental disabilities often have added cognitive burdens. For example, my executive dysfunction already makes it difficult for me to focus on a task. Once I am well into the task, I have strong abilities to hyperfocus—I wrote my book, No You Don’t: Essays from an Unstrange Mind, in just two weeks because I was finally living alone with no one to distract me from my work. But any distraction is fatal to my flow, and it can take me hours to get back on task.

My executive function worsens when I am sick or stressed out. Not having enough money to eat or pay my bills is incredibly stressful. That means that one of the factors that keeps me in poverty—my uneven energy and focus abilities—worsens with poverty, making me even more likely to remain in poverty once I find myself firmly wedged there. I am like a plane that keeps circling the runway because I can’t get enough power to take off and the circling is running through my fuel reserves, ensuring that my plane will never leave the tarmac.

Another disability I live with is Ehlers Danlos Syndrome (EDS), which is a connective tissue disorder that may turn out to be one of autism’s “genetic hitchhikers,” potentially occurring more often among us than in the general population. Anecdotally, a significant proportion of the Autists I know are also diagnosed with EDS or related syndromes. Having EDS has led to a range of seemingly unrelated health conditions. (Doctors have a saying, “if you can’t connect the issues, think connective tissues.”) Along with such “delights” as pelvic organ prolapse and intermittent gastroparesis, EDS has given me feet that shred and tear when I use them. After much expensive experimentation (and a lot of classes missed because my feet were so damaged I could only crawl), I found shoes that don’t damage my feet. They cost over $100 and need to be replaced every six months when I have walked holes through the soles. That’s $100 that has to come from a budget stretched so thin I regularly go days without food.

I count myself lucky, though. I know people with cerebral palsy who have to replace their shoes on a monthly basis because their gait destroys even the toughest shoes in a matter of weeks. And this is something that has to come from our budgets because Medicaid won’t pay for non-prescription clothing. And those of us living on Supplemental Social Security (SSI) are roughly 20% below the poverty threshold to start with.

The federal poverty threshold in the United States for a household of one is currently $12,060. That’s $1005 per month. Right now, I get $735 per month to live on, but starting in December the government will be holding back $73.50, leaving $661.50 per month because I earned $1229 from my writing last year—and that means I owe the government some of the SSI money it gave me. Social Security’s rules are set up to help disabled people transition from SSI to employment, but since I began writing I have learned that those rules are not as easy to live with for those trying to build their own business rather than stepping into traditional employment for others.

So why don’t I just go get a job? Yeah, I tried that. I tried it a lot. Before I finally got on SSI, I’d held 27 jobs and none of them for a full month. I work hard and learn quickly but I … well, employers have always been careful what they said when they fired me, but from what I gather, I kind of creep people out. I don’t smile at the right time. I do smile at the wrong time. I don’t respond to sudden, unexpected questions the way people expect people to respond. I’m too rule-bound (or, conversely, I break rules that “everyone knows” but were never explained to me).

My job pool was limited early on by a neurological disorder I was born with, called delayed sleep phase syndrome (DSPS). From a very early age, I had difficulty staying awake in the daytime, and was unable to sleep at night. But back then it was “diagnosed” as lazy and undisciplined. I never even knew I had a disorder until my thirties, when it shifted into a much more severe related disorder, hypernychthemeral syndrome (also known as non-24-hour sleep-wake syndrome or N24 for short) that shares many genetic markers with DSPS.

DSPS and N24 are also “genetic hitchhikers,” occurring much more frequently among Autists than in the general population. When I was exhausted or asleep in the daytime and wide awake at night, my job options were largely limited to restaurant and bar work, or night security guard.

Once I developed N24, my brain’s subjective “day” became longer than 24 hours, and my wakeful period began moving every day. Imagine if you had to go to work an hour earlier every day, until your 9 to 5 job went from a 9am start time to a 9pm start time in just a couple of weeks, and then continued to get earlier until you were arriving at work at 9am again ... but completely drained from weeks of little or no sleep. That’s what it feels like to try to function with N24.

That is why I cannot work for someone else. I can’t keep someone else’s hours because it’s as if my brain and body are living on Mars time while every employer out there has a timeclock programmed in Earth hours. Even Vocational Rehabilitation admitted that there was nothing they could do to help someone with my circadian rhythm disability.

I have estimated that Autistic people are three times more likely to have a sleep-related disorder than the general population. (I can’t cite a source for this, because I came at this number by combing through medical studies and running lots of calculations. It would take an entire paper all its own to show my work—and I might write that paper at some point.)

With an estimated prevalence of 1% in the general population and as much as 16% among adolescents (most of whom grow out of circadian disruptions by their mid twenties), Autistic rates of circadian disorders could range from 3% to as much as 48% (since many of the studies I analyzed were of youth and no one to date has studied lifespan prevalence of circadian disorders among Autists).

While I know many Autistics who have little or no circadian struggles, those of us who do experience these neurological sleep disruptions are destined to struggle with employment. Those of us with N24 tend to find employment altogether impossible. And, of course, not being able to work is a major contributor to poverty.

So it’s clear that there’s a problem with disability and poverty, but what are some solutions we can work toward?

  • Disabled people need mentors to help them navigate governmental systems. Many disabilities make it more difficult to fill out forms, make phone calls, travel to offices to meet in person, or even understand the complex legalese so much of the government information about benefits is written in. I’m not talking about payees or guardians but mentors—workers dedicated to helping disabled people to live more fully, with full agency and autonomy.
  • We need to raise the asset limits for people receiving benefits. Currently, SSI recipients are not allowed to have more than $2000 in assets. Yes, the ABLE Act increased that asset limit, but only for those with documentation of disability onset before age 26. That doesn’t help those with disabilities that occurred later in life, and it doesn’t help a lot of Autistics, even though we were born Autistic, because not all Autists can produce acceptable documentation.

    I wrestled for a while with the Social Security Administration (SSA), trying to get my benefits changed from SSI to SSDI-Adult Child. I qualify in every way, and have clear documentation of disability from age 17, but the SSA repeatedly refused to accept that my institutionalization —for the same disability I was later awarded SSI for—counts as evidence. I finally gave up the fight through sheer exhaustion. I could not find a lawyer to represent my case because I am poor, plus switching from SSI to SSDI would not create a back payment to pay the lawyer with.

    Because of that battle, I have not even bothered to see if I could get an ABLE account. (See my point above about Disabled people needing a mentor to help them navigate these shark-infested waters of government benefits.) I am assuming the answer would be “no.”
  • Reform the work rules to make it easier for Disabled people to earn money and eventually transition out of poverty.
  • Raise the SSI amount to the poverty threshold. It is scandalous that SSI recipients are expected to live in poverty, since the program is specifically designed for those who cannot work. The most recent report (2007) showed that only 19.5% of people on SSDI, and 12.6% of people on SSI, worked in that year. Only 2.9% of disability beneficiaries earned income at the poverty threshold or above in that year.
  • Support more job opportunities for disabled people. Work programs for Autistic people should not be limited to tech jobs, as those only target a narrow slice of the Autistic population. Encourage supported work in the community rather than sheltered workshops. Encourage programs for Autistics to start and build their own businesses. Support programs that offer legitimate opportunities for Autistics to work from home. Create mentorship programs to help Autistics who have never created a resume or CV, have never gone on a professional job interview, and are lost when it comes to the networking that is so crucial for many careers.
  • Support affordable housing for disabled people in the community that are not institutions or group homes.
  • Help eliminate “food deserts,” those communities where it is impossible or very difficult for those with limited mobility or transportation resources to access healthy food for reasonable prices.

The list of what we Autistics specifically and Disabled people in general need is overwhelming. And this is a bare bones list, just a starting point. What we really need is huge: a complete overhaul in how society views us.

Until we achieve that shift in social perspective, let’s start chipping away at the barriers. Write letters and make phone calls—not just to politicians, but to entrepreneurs and charitable organizations as well. Advocate for Disabled people’s unmet needs, and promote that social shift at the same time, as and how you can.

Stop people when they talk about “moochers” and “welfare leeches” because that kind of talk primarily hurts disabled people. Seventy-five percent of food stamp recipients are families with dependent children. Twenty-five percent of food stamp recipients are elderly or disabled. Allowing gripes about “people who don’t want to work” to go unanswered adds to the stigma that keeps disabled people in poverty.

We are counting on you to help. Disabled people can’t fight this battle—a fight for our lives!—alone.

Wednesday, October 4, 2017

Executive Functioning Problems: A Frustrating Aspect of Being Autistic

Finn Gardiner

Photo © Joseph Novak | Flickr/Creative Commons
[image: A Black office worker sitting in a chair in a cubicle,
surrounded by messy piles of newspaper and other papers.]
I don’t actually like messes. It’s just that my executive functioning problems cause me to generate them to my own—and others’—consternation. 

I consider my executive functioning difficulties one of the most disabling aspects of my being autistic. These struggles manifest themselves in a number of different ways, all of which are extremely frustrating. I’ve struggled with executive functioning since childhood, but I didn’t have the words to describe my experiences with it until I was an adult in my mid-twenties.

I have the hardest time with daily life tasks. For example, cleaning my room without direction or prompting is really difficult. It’s hard to turn the whole into parts, and once I’ve taken care of one part, I run out of energy to deal with the rest of the room. Trash bags accumulate in corners of my room because I keep forgetting to carry them down with me when I go downstairs. Plates, cups, and kitchen utensils lie on my dresser and bookshelves because I forget to put them in the dishwasher. It doesn’t help that I tend to perceive messes as part of the environment if they’ve been there too long.

Bills and paperwork lie on my bedroom floor. I’m terrible with paper. I pay all my bills electronically. It’s often the case that the only time my bedroom is spotless is when I’m ready to move out, and have the landlord do the final inspection so I can get my security deposit back. It’s easier for me to deal with common spaces in my apartment because my housemates and I chip in to cover a housekeeping service, but this is relatively recent. The housekeepers only deal with the kitchen, bathroom, dining room and living room anyway; I’m all on my own when it comes to my disaster area of a bedroom.

If I’m already drained and have exhausted my executive-functioning spoons for the day, it’s nearly impossible for me to cook a substantial dinner. I’ll end up ordering delivery instead. I like delivery every so often, but I feel like I’m spending more money on these orders than I’d like.

On top of that, I sometimes struggle with disordered binge-eating. I find it hard to start and stop activities as a general rule—I’ll get stuck in an activity and won’t be able to unstick myself for a while—and eating is no exception. I’m trying to be more mindful of my eating habits, but it’s taking quite a bit of time.

My executive functioning is questionable at any time of day, but it tends to be even worse before 10 AM. This is despite my using an alarm every morning to ensure that I get up on time. I’m usually awake when I’m supposed to be, but it’s difficult to “bring my systems online,” so to speak, until I’ve been awake for several hours. Morning classes and meetings are a wash for me much of the time, because I just don’t have the bandwidth to give my full attention, and it’s highly likely that I’ll be too tired to follow along as well as I’d like.

My executive functioning problems also affect my professional and academic life. I find it difficult to make plans for class- or work-related projects if I don’t already have a framework for them in my head. Once I have a system for doing something, tasks become much easier. I sometimes need prompting and check-ins to finish projects. I consider myself a reasonably independent worker, but I need an initial push to get into the groove. Check-ins while a project is underway can also help. I also benefit from collaborative to-do lists from supervisors and clients. Sometimes I find myself waiting until the deadline is perilously close, and then start a project in earnest because the deadline makes things feel more real.

Having executive functioning issues make me feel like a crappy adult because I do care about getting things done. It’s just that I don’t always have the bandwidth to develop a workable system that I can stick to. I worry constantly that people think I’m lazy or a procrastinator, because I frequently get stuck. I used to get screamed at constantly by my parents because of executive functioning difficulties, but I didn’t have the language to describe what I was going through, to help them understand.

I’ve been self-medicating with caffeine, for a while. I bought a case of 24 Red Bulls two weeks ago, and after I ran out, I bought extended-release caffeine pills to take instead. Caffeine helps me actually sit down and start things like work projects. It has its side-effects, but it’s more effective than doing nothing.

I think I would benefit from ADHD medication or something similar, but I worry that I’ll come across as meds-seeking. My psychiatrist wants me to go through a neuropsych evaluation, but the waiting lists for those exams are long, so that won’t help me right now. And right now is what’s frustrating me. Professionals may consider me to have “mild support needs,” but that doesn’t mean that I don’t have legitimate support needs.

Tuesday, October 3, 2017

"Dina" Presents an Honest Take on Autistic Love

Sarah Pripas

Non-autistic people are fascinated by autistic people’s relationships—romantic relationships especially. As an autistic woman who has been in a relationship with an autistic man for eleven years (six of these as a legally married couple), I know too well that autistic relationships are oftentimes perceived by non-autistics as inspirational at best, and freakish at worst. So it was with no small amount of trepidation that I began watching Dina, a documentary film about autistic couple Dina Bruno and Scott Levin, which opens October 6th. Yet despite my reservations, Dina turned out to be a thoroughly enjoyable take on autistic love.

[video description: Trailer for the film Dina, a documentary about a white autistic woman and
her white male autistic spouse, featuring scenes from the movie.]

The movie’s opening seemed to confirm my worst fears. The film deliberately takes a minimalist approach as it follows Dina going about her life in Philadelphia. I couldn’t help but think to myself: Does the world really need this? I suppose some non-autistic people might be fascinated by the sight of an autistic woman doing everyday things—a dental procedure, re-arranging furniture in her apartment, going on a lunch-and-movie date. But I hardly found it riveting. I worried that the entire premise might veer too close to the dreaded trend of treating autistic lives as zoo exhibits. Yes, neurotypical people: We autistic people watch bad reality TV. We date. We even—gasp—have an interest in sex.

And yet as the film progressed, I found myself increasingly invested in Dina and Scott’s story. Media that focuses on autistic women is still scarce, so I very much appreciated the choice to follow the relationship through Dina’s eyes, even if some scenes of her everyday life seemed to veer on voyeuristic. (Did we really need to see her changing in and out of a bra? Really?!)

Viewers gradually learn that Dina, now in her 40s, has experienced considerable hardships. Her first husband died of cancer, and a previous boyfriend attacked her violently. “A lot of people said I was supposed to be dead,” Dina tells her mother in one scene. “I think I have this amazing strength in me.”

In that, Dina is quite correct. Although I instinctively rebel against the disabled-person-as-inspiration trope, one can’t help but be moved by Dina’s willingness to try for love again, despite everything she has experienced.

As the story of Dina and Scott’s engagement and wedding unfolded, I found myself appreciating the documentary’s hands-off style. Instead of trying to deluge the viewer with generalized information on autism people and relationships, Dina’s filmmakers kept it simple: showing us two autistic people, trying to make it work.

Dina and Scott’s relationship is portrayed with refreshing realism. Although the two clearly love one another, they struggle with different expectations for sexual intimacy. Dina prefers more intimacy and touching, while Scott seems less comfortable with it. Sometimes the film’s documentation of this conflict gets a little uncomfortable, such as when Dina gives Scott a copy of The Joy of Sex while they’re on an Ocean City boardwalk. Still, this is a real issue that many autistic people face in relationships, so I appreciate the film being willing to handle it honestly.

Other issues that autistic couples face were also acknowledged. Scott and Dina are both low-income—he works at WalMart, she receives disability payments. And Scott, who is younger than Dina, has no experience living independently. That’s part of their lives. Still, they go through the rituals of American weddings with aplomb: the engagement party, the pre-wedding manicure, and even a bachelorette party featuring a male lap dancer. It’s not revolutionary, but still refreshing to see autistic people participate in these activities.

My favorite moment was one that demonstrated the non-conventional wonderfulness of autistic love. While the couple went on a mini golf date with another couple, Dina rants that Scott doesn’t display affection to her in the ways she wanted. This was especially tough, she said, because as a disabled person she is used to being rejected. When the couple arrives back at home, Scott communicates his affection for her by playing Dina’s favorite song on his phone: Richard Marx’s Right Here Waiting for You. Cheesiness of the song aside, this was an incredibly moving moment that demonstrates the immense possibilities of autistic love.

I do have quibbles: Some of the more mundane moments could have been cut, or at least shortened. There was no need for this movie to run one hour and forty minutes. And there were a few moments of obvious ableism. I didn’t like the patronizing attitude Dina’s mother displayed at times. During their pre-wedding mani-pedis, Dina’s mother condescendingly explained Dina’s disabilities to the manicurists. Then, she gave Dina the silent treatment after Dina became stressed out and flapped her hands. Seemingly, her mother was unaware that it was she and not Dina who was acting rude and making a scene needlessly.

Although I yearn for the day when the stories of real autistic people in love are so commonplace that such documentaries don’t need to exist, overall Dina is an honest and refreshing take on the subject. I’d recommend watching it for a feel-good experience.


Content warning: Towards the end of the movie, there is an audio recording of intense, real life domestic violence.

Sunday, October 1, 2017

Helping Autistic Children Understand Death and Dying

Maxfield Sparrow

Don't cry little princess
Photo © Benedic Belen | Flickr/Creative Commons
[Image: Black-and-white photo of an Asian woman comforting a small crying child
who is wearing a tiara, and has their hands over their face.]
The Thinking Person’s Guide to Autism asked Autistic adults to fill out a survey about death and dying to create a resource for people who need to explain death to Autistic children. The response was tremendous—in less than a week the survey had 50 responses, mostly from Autistic adults. What follows is a summary and analysis of the responses. We hope it is useful to you, your child, your family, your clients, and your students.

Please note that some of the responses discuss difficult material, including suicide, and suicidal ideation/threats.

Bullet Point Summary
  • Autistic adults were surveyed about death and dying.
  • Most learned about death through observation of people, animals, and plants.
  • Learning about death was a process rather than a one-time event.
  • A majority of Autistics said Autistic children want factual statements, not euphemisms about death.
  • Autistics want the right amount of information about death - not so much it overwhelms, but not so little their questions go unanswered.
  • Don’t expect Autistic children to express grieving emotions in the same way or on the same timetable as the people around them.
  • Links to books and other teaching materials can be found in the last section of this article.
This article discusses those responses to five questions about ways Autistic children learn about death, the most and least useful ways to help Autistic children understand death, and recommendations for adaptive communication technology for talking about death. I have attempted to quantify the answers but also share some representative quotes to help illustrate these responses in a more qualitative manner.

Question One: If you are Autistic, how did you become aware of the concept of death?

Most respondents learned about death through experiencing the death or a person (20), or a pet or other animal (11). It is worth noting that many survey respondents spoke of becoming aware of death as a process happening over the course of more than one death or other learning experience. Respondents often said they were quite aware of death for many years, but it was only with the death of a person or animal close to them that they finally experienced an emotional impact that moved their understanding of death and dying from an abstract concept, to something personal they had to cope with emotionally.
“I was introduced to Death being dragged to funerals as a child, but death never clicked. I never lost a close family or an animal until I was 16 and my grandpa died. That's when I became aware. I wouldn't experience my next death until 25 with my dog and I struggled with reality and depression and confusion. The devastation of both events have had major negative impacts on me solely due to not understanding or learning what death was as a child.” -Sophia 
“The very first death I ever dealt with was with our dog Rex. [...] I didn't really apply my knowledge of death to people yet at that point though. Pet death seems to be a different context in my brain than people death though. I think part of my issue as a kid was taking one context and applying it to other contexts. My great grandpa died when I was 3 though, and my uncle died in a more terrible way when I was 4. [...] By the time I was 8, death and grieving, I don't want to say was "old hat" but, I was more aware of what was going on. [...] By the time I was a pre-teen, I didn't know what to make of people who hadn't experienced loss.” -Anna J
The next most common answers were from those who weren’t sure how they first learned about death or who felt as if they had just always known about death. Eight answers included something along these lines.
“The same way as everyone else?” -Anonymous 
“I can't really remember any one particular moment of becoming aware of the concept of death, which means I probably learned it slowly through media exposure. I did attend my great-aunt's funeral when I was a toddler, and according to my grandmother I did ask if she was sleeping in the casket, but I have no memory of this.” -Billie 
“I just knew about it. Like I did about sex, gay relationships, etc... It wasn't a big deal.” -Jade 
“I honestly don't remember NOT having a concept of death.” -Anonymous
Four Autistics reported learning from books at home or at school.
“2nd grade. Teacher died. Other teachers thought it would be a good idea to read the class a book on weather seasons more specifically autumn. Basically leaves get old on the tree and die and fall off. Life is a cycle in nature. Everything dies kinda lesson. So every time I see a leaf on the ground or in the process of hitting the ground I think of death.” -Michael 
“I started thinking about death and dying when I was two years old. I could read fluently by then and my parents didn't know that and my mum left her horror books lying around and I read them. There was a lot of death in those stories and that is how I learned about it.” -Michele Brenton 
“I read about it in a book about "difficult subjects" to explain to children.” -Anonymous
Three people learned about death and dying through their religious education.
“We learned about it in Jewish day school. One of Maimonides 13 articles of faith is that the dead will come back to life. I used to have nightmares about green people crawling out of the dirt at the end of the world. That's my earliest memory of the concept of death.” -Sara Luterman 
“I don't remember. My grandparents said that dead people were in Heaven when I was a kid and asked about it. I didn't know anyone personally who had died until I was an adolescent. [...] Heaven was a concept that made sense to me because I could picture it as an actual place, and I was most likely satisfied with the explanation of Heaven, especially because the teacher would sometimes discuss Heaven in Sunday School at church.” -LB
Two learned through watching television or movies.
“It was pretty much told to me that people don't live forever, their bodies give out just like with Rex, and that people are looking down from heaven at you when they pass (I think with Rex, everything was also solidified later with All Dogs Go To Heaven).” -Anna J
And two answers were each in a category all their own.
“My mother threaterned to kill herself in front of me when she was 2 and explained she would go away forever and I would have no mummy ever again.” -Anonymous 
“Through continuous exposure with the word (vocabulary building) using pictures and videos.” -Trixie
A theme that emerged from many responses was that of knowing about death but still being unprepared for the intensity of grief when death finally took someone important in a person’s life. This, combined with frequent reports of learning about death as an ongoing process that deepened not only with more personal experiences with death, but also with ongoing exposure through books and movies, suggests that helping Autistic children learn about death is not a one-time event, but an ongoing journey.

Adults need to be aware that an autistic child's intellectual understanding of death should not be mistaken for the fuller understanding that may only come with personal loss and grieving.

Question Two: What do you think is a reasonable and helpful way to help an autistic child understand the concepts of death and dying, based on your personal experience (and with the understanding that autistic children have different personalities)?

An overwhelming majority of responses (26) mentioned honesty, taking a direct approach, explaining the facts.
“Factual, acknowledge feelings, use calm voice, agnostic but hopeful on the afterlife. Death ritual with an insect or animal.” -Anne 
“I think a straightforward explanation that demystifies the experience is the best approach, perhaps something along the lines of "eventually people and animals' bodies stop moving around and the things that made them go leave forever." Most children are naturally curious, and as an autistic person I've always gotten particular satisfaction from understanding the WHY of something.” -Billie 
“Frank but gentle explanations” -Laura 
“Being honest. Allowing involvement in the process where possible.” -Niki 
“I think the younger and more logic-bound someone is, the more explicit you have to be about it.” -Anna J 
“Explain it truthfully, using hard facts. Don't give us a ton of silly convoluted metaphors. [...] You don't have to coddle an autistic child about it the way you would a neurotypical child. Trust me, we don't appreciate it.” -Anonymous
Six responses mentioned using books, movies, or articles to help explain death.
“I think it depends on your religious beliefs and whether or not you believe in Heaven. There are real-life stories I've read in the news about how (presumably neurotypical) young girls learned to understand what death meant, from a religious family  and a secular one. I would recommend reading one of those stories to your child (or together with them) depending on your family's belief system. I liked having real-life examples of other kids handling similar issues to mine, especially when they were also girls (since as a kid, I was convinced most boys had cooties).” -LB
Five responses discussed explaining non-autistic grief styles versus autistic grief styles to help everyone accommodate everyone else’s different grief needs.
“Facts, science about what happens to the body at death and practical tips about stages of grief for normals (strange things they might say like, "He's in a better place." means they cared about them when they were alive and saying that is a way of saying they are sad-- Not that that a coffin or urn is a better place to be). Listing common phrases like "Sorry for your loss" and what the person is really communicating would be helpful” -Sarah Robinson 
“Remind them that NT [non-autistic] people often grieve in a set of specific ways (i.e., crying, talking about memories of the deceased person, cleaning/leaving their things, more irritable). Autistic people may grieve in different ways (i.e., Shutdown/meltdowns, extra hypersensitive, avoidance, frustration) or not at all. Grieving differently is ok, and no one is doing it wrong. Being aware of those differences reminds everyone to give each other the space necessary to process the event.” -JAL 
“I understood what death was. I did not understand the rituals and emotions surrounding it. I did not understand what was expected of me and why. People thought I didn't grasp that my dad was gone so they made me look at the body. It was horrible. I knew about death. I needed to be allowed to NOT respond to everyone else's emotions all the time. I needed some kind of explanation of why people were acting the way they were, crying and touching me. I needed some routine, calm, and reassurance.” -BGP
Four responses mentioned acknowledging feelings and, in particular, the emotions surrounding coping with change.
“Accommodate the fact that an intrinsic part of loss is change. Especially for an autistic person. Death can be upsetting not only because someone they love is gone, but because that means their world is disturbingly different.” -Sara Luterman 
“I do think it's important to let a child know that it's okay to be sad. It's okay to laugh and doesn't mean you aren't also sad at the same time. It's okay to talk about the person or pet that is gone. I felt afraid to talk about my brother.” -Maxfield Sparrow
Three responses mentioned the importance of visual materials when explaining death. Three responses talked about exposing Autistic children to the concept of death through observing and discussing the death of plants and/or animals.
“For me, it helped that my mom did not hide the fact that my pets had died. She was honest that my little friend had permanently lost all biological function, let me view the body (allowing me to touch when possible) and would help me prepare a memorial ceremony for each pet. Experiencing the cycle of life as concrete reality really helped me prepare for the loss of relatives when I was older.” -K. Hall
Two people specifically mentioned the value of using social stories as well as building a vocabulary of words helpful in talking about death.
“Vocabulary building using social stories, videos, pictures of death, burials, and mourning people (given that the child is aware of the concept of emotions).” -Trixie
One participant mentioned the importance of giving an Autistic person extra time for processing grief.
“And don't have them rush grieving. It may take them a long time to grieve someone. I know it still does for me. Usually I have to come to it on my own terms until my subconscious is able to have closure.” -Anna J.

Question Three: What are some misguided ways to explain death and dying to autistic children, and why (again, in your experience)?

The number one response to this question was to avoid using euphemisms or unclear language. Euphemistic phrasing was mentioned in 23 responses, and had a big overlap with the 13 people who said to leave religion out of explanations of death. Among those who specifically said to avoid religion, the reasons varied from religion being too abstract and full of euphemistic language, to religion being “wrong” or “a lie,” to religion being okay for comforting adults—but too confusing for children who are just learning about death.
“Lies like "they go to heaven." That doesn't make sense, is incomprehensible, overly complicated and would just irritate the rational-minded autistics.” -Katharina 
“I was told in vet tech school to never ever use euphemisms such as putting a pet "to sleep," as children might take that literally. Do not, under any circumstances, try to hide the fact that a pet has died by saying it ran away, or sneak off to replace it with an identical pet. Also, abstract concepts like an afterlife can be difficult for Autistic children to understand, even though I take some comfort in them as an adult.” -K. Hall
Two responses came from three people each: don’t avoid the topic, and don’t overwhelm a child with too much emotion or more involvement than they want. Two people each said: don’t lie or underestimate a child, and don’t teach about death through threats or other frightening interactions. Finally, one person each mentioned the following: don’t give false reassurances like “I’m not going to die for a very long time.” don’t treat kids with a one-size-fits-all formula, and don’t deny the family’s religious beliefs.

Question Four: What other aspects of the explaining the concepts of death and dying do you think adults should be more aware of, when it comes to the experiences of autistic children?

The majority of responses to this question (16) repeated the earlier advice about keeping things factual and sharing as much information as a child asks for or appears to need. One response gave a general rule of thumb for deciding how much detail a child might need:
“I would recommend really thinking about how the child reacts to other things and base how you approach this subject in the same way they would want you to approach something else rather than basing it on their age alone, if this is a child (like I was) who wanted to know the species and genus names of dinosaur toys when they were 3-4 years old and would explain what features on their toys did not fit those species and genus, they probably do not want an explanation of death that is any less exact (which isn't to say you should not be sensitive, they will probably still be upset, especially if it is a loved one or pet, but using flowery/euphemistic language might just make it more difficult)” -Brit
The next most common (8) response group were Autistics who talked about not shaming a child if they do not respond in any particular way or on any expected “timetable” and not making emotional demands about how (or whether) emotions are experienced or expressed.
“They shouldn't shame the child for not showing grief or showing grief another way. I remember that I didn't cry when my grandparents died, but when our dog died, it was very hard for me. People might say I didn't love my grandparents just because I didn't grief like they might. So, not shaming is important.” -Katharina
“Sometimes autistic children don't grieve. This may be hard to hear, but sometimes there are people that we are "supposed to" feel close with, such as extended family members, that we don't have a personal connection to. This could be due to not having spent a lot of time with them, or not feeling a lot of care for a particular person. For these people, the autistic children may not grieve, per se, yet be responding to the grief of others around them. They still might still need help understanding why the people are so sad, or why the deceased person won't be around. My point here is, don't get mad at children if they do not feel or experience grief, or in the same way you do.” -JAL 
“Understand that autistic children may not respond as you would to grief. Using the above example [When my third cat was dying, I asked to accompany my parents when he was to be put down, only to be sharply rebuked as insensitive], my parents saw putting my cat down as a means to an end, whereas I saw it as a way to say goodbye. Autistic children may not act as if they are grieving, or their grief might explode outwards in ways you do not expect.” -Nant Celas 
“A child may need information repeated multiple times while they process the permanence of death. Be patient and strive to keep the child from feeling judged for needing to go over the same ground repeatedly.” -Maxfield Sparrow 
“We tend to have strong empathetic relationships with our pets, so treat the death of a pet like the death of a human relative.” -LB
Three people had very helpful suggestions about maintaining routines during grieving or helping an Autistic child find their own role in the death rituals.
“Knowing the significance of routines in the lives of autistic people, a good approach may be to set up a sort of mourning routine if death is being explained in the context of a friend or family member dying.” -Billie 
“Giving them things to do to help (arrange photographs, hand out information for gatherings afterward, asking if they can get anyone a cup of water, etc.) Can give them a defined role” -Sarah Robinson
Along a similar line, two people wrote about letting children set the emotional pace and create their own symbolic gestures or routines that have meaning for the child.
“I think kids need some concrete ways of saying goodbye, some action that is meaningful to them. Rituals that are created for adults often aren't meaningful to autistic adults, much less kids.” -BGP 
“I think "people's legacy live on in their ideas" is important as I stated before that one way I utilize grieving is to commemorate the passed people through their rituals or habits. Like if my food tastes overlap, I might have something they were known to like for dinner and think of them that way, basically to draw back to happy times I spent with them.” -Anna J
One person mentioned the importance of addressing death before someone close to the Autistic child dies and two other people suggested doing that by observing death in nature and using it as teachable moments.
“All kids who spend any time outdoors will see things die. Observing and talking about this is helpful.” -Anne 
“I like to explain the nitrogen cycle, and what happens to bodies after death. that we become plants.” -Anonymous
While two people mentioned the importance of generally presuming a child’s competence, two other people cautioned against talking about religion before a child is ready. Another pair, however, specifically recommended offering spiritual/religious explanations that involve teaching Autistic children that death is not the end of a person.
“Death and dying is not just about the body dying, it is about change and about experiencing a new different experience than what we already experienced.” -J
One person talked about the importance of teaching a vocabulary of death, including medical terms. Another person recommended explanations along the lines of social stories and scripting responses.
“Taking the time to explain the process the body goes through, medical definition of death, and appropriate people and times to ask related questions can help frame an experience like a funeral. Children may need to have an agenda for the steps involved and expected physical touching (more hugs, seeing people crying, outbursts) and appropriate verbal phrases or responses can be provided ahead of time.” -Sarah Robinson
Other responses offered by one person were: remember that grief can exacerbate sensory issues and meltdowns so give lots of quiet time, address the child’s fears of future losses, talk about post-mortem consent and what constitutes a “good death,” and stay calm and try to make the topic as emotionally light as possible.

Question Five: Can you recommend preferred adaptive, simplified, or AAC (augmentative and alternative) materials on this topic, for autistic children who use those approaches?

Most respondents either left this question blank or said they didn’t know of any helpful resources. Here are all the recommendations that were offered:
“Don't know any. Rabbi Ruti Regan probably does, though.” -Sara Luterman 
“The Dead Bird is a pretty good book, by Margaret Wise Brown” -Anne 
“We used to read the Funny Bones books by Janet and Allen Ahlberg. They were amusing and gave us a light hearted way to talk around the various ideas around the subject.” -Michele Brenton 
“Raising a small pet as soon as it is appropriate is a excellent way to teach about the whole entire life cycle, not just death.” -K. Hall 
“Gray's Guide to Loss is really good [note: we could not find a link, but here is an option]. I also appreciate that there have been a lot of recent books. There is a workbook about death and dying and loss which Catherine Faherty uses. Jessica Kingsley and Future Horizons books are also good. I am thinking of virtual ways and independent games and MUDs. TV shows might be good depending on the material—medical and legal series and romance books and magazines.” -Adelaide Dupont 
“Maybe for older children, I think the Everything Dies coloring book is actually really interesting and I would have appreciated it as a 9-12 year old” -Brit 
“Social stories could be found on Google (for those who are capable of understanding social stories). For those with cognitive difficulties, maybe 'emotions' should be taught first, then 'social thinking' could follow next.” -Trixie

The Thinking Person’s Guide to Autism would like to thank everyone who responded to this survey. Autistic adults are among the best resources for parents seeking to learn more about raising their Autistic children with compassion and understanding. Taking the time to share your experiences helps so many parents and their Autistic children.

Note: While some respondents were non-autistic parents of Autistic children, only responses from Actually Autistic people have been included in this analysis. The few parent responses repeated things already said by Autistic adults, so no useful information has been omitted by the choice to focus exclusively on Autistic voices.