Showing posts with label joy. Show all posts
Showing posts with label joy. Show all posts

Starting Points for Understanding Autism

Oolong
oolong.co.uk

Photo courtesy the author
[image: Photo (light-painting) by the author: a spectral outline
around a hand and arm, raised as if to flap.]
I believe that the best way to understand autistic minds is in terms of a thinking style which tends to concentrate resources in a few interests and concerns at any time, rather than distributing them widely. I wrote in some detail about how this explains the observed features of autism in Me and Monotropism: A Unified Theory of Autism. Here, I want to distill what this means for living and working with autistic people, expanding on the six starting points for understanding autism that I identified in ‘Theories and Practice in Autism.’

I’m writing in the first person here, as a late-identified autistic adult who has worked and talked with many other autistic people in various contexts over many years. I believe that everything I describe here is a common experience for most people on the spectrum, but not necessarily universal. Many will be shared to various degrees by some non-autistic people—there are very interesting questions about the extent that different thinking styles overlap; brains really are very diverse, and psychological classification is a messy business. References, reviews of research and further resources for each section appear at the end.

1. Coping with multiple channels is hard

This can be sensory channels or other information streams.


This shows up in many ways; some of the most obvious ones are social. If my attention is focused on something else, I may not be able to take in what you’re saying. If I’m focusing on what you’re saying, I may not be able to do anything else (or I may need to do something else to absorb excess attention).

Most people assume there are multiple channels of communication going on in any conversation: words, tone of voice, gesture and eye contact. They also assume an ability to hold various other things in mind while talking: social context, social rules, relevant background facts. This works most of the time, for most people, but causes endless confusion in conversations between autistic and non-autistic people. Be prepared for misunderstandings where someone missed out on one or more of the channels you thought were conveying information.

Be aware that autistic communication styles tends to be different, too, for much the same reason. We are expected to maintain multiple channels of communication in socially acceptable configurations at all times, despite missing a lot of non-verbal cues throughout our lives. It often takes conscious effort to emote ‘appropriately’, display expected body language and suppress urges to regulate ourselves with motions people might find weird… all while trying to make sure not to say anything daft. Learning to do all this can be a valuable social skill, but it takes a lot out of a person, and it just doesn’t always work. If you want someone to be able to relax, they need to be able to feel comfortable being themselves—even if that looks odd to you. Learn to read our body language as best you can, but be aware that most people often get it wrong.

2. Filtering is tricky and error-prone

Sometimes I can’t tune things out, other times I filter them out completely.


Filtering is an active process, and it becomes much less effective when our resources are consumed elsewhere. That means our filters tend to be at their wonkiest when we’re worn out or having to keep up appearances. Any work done filtering out unwanted stimuli leaves less energy over for anything else.

Being unable to filter can be intensely uncomfortable, especially if it’s keeping you from something you want to focus on. Please take care of the sensory environment: too much noise and clutter and stimulation can be exhausting, painful and impossible to work with. Sometimes it helps a huge amount to be able to spend some time in an environment where we can control our sensory input, and not have to filter anything for a while.

Some of the most satisfying, relaxing and productive times are when we can enter a flow state, our attention completely absorbed in an activity. At those times, we may filter out almost everything else. If we can’t get rid of enough distractions to begin with, it becomes impossible to enter that state.

3. Changing tracks is destabilising

Task-switching is hard, and new plans take work.


It takes time and effort to get going, to change direction, or to stop. In other words, autistic thought tends to have a lot of inertia: it resists a change in state.

This can be great for working through complex logical puzzles, learning large collections of facts or just getting intensely absorbed in anything, but it can be very inconvenient all the same. Pulling all our tendrils of thought out of one thing and directing them towards another takes much longer than it does for a lot of people, and sometimes it’s hard to make them go where we want them—let alone where other people want them. Give us warnings, give us time, let us recover.

Don’t expect an instant transition from one thing to another, especially if it’s unexpected. It’s hard enough changing tracks even when we know what’s coming. A sudden change of plans means we have to completely reset and work out how to deal with everything about the new circumstances.

4. I often experience things intensely

Usually things that relate to my concerns and interests.


When my attention is fully focused on something, my brain seems to throw everything it can get at that thing. I credit this with my senses often seeming to be more intense and detailed than most people’s. I seem to get more than most people out of being absorbed in my interests, in general; I think this relates, again, to flow states.

On the other hand, unexpected input sometimes really shakes me. This might be something sudden, or just something that doesn’t seem to fit; either way, I can’t ignore it. It’s been suggested that the main difference with autistic brains is that they just have their ‘surprise’ setting turned right up; I wonder if our tendency towards intense surprise comes from having fewer interests or filters active at any given time, and finding the unexpected more jarring because of the intensity of our focus.

Incidentally, one of the side-effects of being surprised a lot is that you do sort of get used to it. I’ve often known autistic people to seem less surprised by things other people seem shocked by.

5. I keep looping back to my interests and concerns

It’s hard to let things drop.


It’s in the nature of interests and concerns that you loop back to them. If you’re interested in something, things are likely to pull your attention back to thinking about it. Monotropic minds tend to get pulled back to the same loops of concern again and again, especially when they have unresolved questions. People are terribly confusing, so we often have lots of unanswered questions. Sometimes a question might have been adequately answered really, but it still doesn’t quite feel like it, so we need to ask anyway. Other times, people are just impossible to predict, and there is no way to lay those worries to rest. These things can haunt us for years, and carrying them around can really sap your energy.

Still, I like how things are so interesting. Fascination is a fun thing, and I’m glad people have hardly ever tried to talk me out of my fascinations. I like working stuff out, and learning new things, but I also like to just get lost in things sometimes. Sometimes people are baffled by the sorts of things I like to do and learn, but really it’s their loss.

6. Other things that drop out of my awareness tend to stay dropped

I may need reminders.


I really need some kind of system to make sure things I’m supposed to think about come back to my attention. It’s so hard keeping tabs on lots of things at once, I’m bound to drop some of them if I don’t get reminded at the right time. This is complicated by the fact that if I’m in the middle of something, I really don’t want to let myself get pulled out of my attention tunnel for anything I can possibly put off.

This means there are all sorts of things other people might expect me to be thinking about, which I might not be unless I’m getting the right prompts. That includes things I genuinely care about, by the way; I hope nobody assumes I’m indifferent to things just because I fail to think about them. I just have so much else going on in my head!

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I understand all of these features as manifestations of a monotropic thinking style: the more a brain concentrates its resources in a few interests and concerns, the more we should expect these to be true. Other theories can predict and explain many of the same features (see below) but I’m not sure that any other single theory leads us to all of the same predictions.

All of these taken together add up to a world that can be very difficult to deal with. It is no wonder so many autistic people experience so much anxiety, confusion and overwhelm. Our capacity for joy and focus can be some compensation for this, but it is often difficult to navigate a world dominated by people with relatively typical brains. If people can’t or won’t understand and accommodate our needs, problems accumulate. Discomfort can get ramped up higher and higher, until we have to escape or else we’ll melt down or shut down. This can last for a long time, and it is so often avoidable. I hope what I have described gives you some good starting points for working out how.

With the right strategies and understanding in place, most autistic people can thrive. Without them, life can be incredibly difficult, and much of what we have to give to the world gets lost. I wouldn’t change very much about my brain — I mostly like being who I am. I would, however, like to change many things about this world and how it deals with people who think differently.

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If any of this helps you make sense of things, or changes how you relate to autistic people you know, I would love to hear about it. More important than that, please let me know if there’s anything here that doesn’t ring true for you! These ideas are being actively developed, by myself and others. There may be things we are getting wrong, and there are certainly things we haven’t fully worked out yet. One of the things I am especially interested in working out is what this all means for teachers, and I may soon produce a tailored version of this piece augmented by examples from educational practice.

Research, References, Resources


There is empirical work to be done to establish how well most autistic people feel these descriptions apply to them—beware anecdata, and all that. So far the best direct evidence for Monotropism as a theory of autism is probably Julia Leatherland’s unpublished PhD thesis, Understanding how autistic pupils experience secondary school, which found that Monotropism accounted for more of pupils’ reported experiences than any other single theory. I believe the basic features I describe here are all well-supported both by psychological research and the accounts of autistic writers, but Monotropism as a theory is still crying out for experimental work.

Notes for each of my starting points follow.


  1. Although it took until DSM-5 for perceptual differences to be included in diagnostic criteria, difficulty dealing with multiple sensory streams is attested since early autism research. Lovaas et al were not the first to record it in 1971, and see Marco et al (2011) for a systematic review. Mongillo et al (2008) found that difficulties with speech processing—perhaps unsurprisingly—were associated with social difficulties, and includes the fun fact that autistic people are much less susceptible to the McGurk Effect.
  2. It is well known that filtering is an active cognitive process, keeping the conscious mind from being overwhelmed with too much data. In the Predictive Coding model of the mind, much of what our brains do can be seen as filtering: non-conscious processes work on predicting the input coming in, and only what they fail to predict makes it through to conscious awareness. See Friston & Kiebel (2009) for a technical account, and Van de Cruys et al (2014) for more on the idea of autism as being a manifestation of excessive surprise. Karl Friston’s video on embodiment and Andy Clark’s book Surfing Uncertainty are both excellent introductions to this general approach to cognition, with a bit about how it currently seeks to account for autism.
        It seems natural to expect filtering to take energy, in the sense of both requiring and exhausting cognitive resources. So far I have only found research exploring the former, and not in an autism-specific context: Drummond et al (2012) found that sleep deprivation reduces visual filtering ability; Hasson et al (2013) found that a combination of emotional exhaustion and stress reduced tolerance for loud sounds.
        The National Autistic Society has a pretty good page on autism and the senses in general. On flow states in autism, see Milton (2017) and this video, also by Damian Milton.
  3. This is normally talked about as an aspect of executive function, which has been extensively studied with reference to autism—see e.g Hill (2004), and occasionally posited as an underlying explanation for all autistic cognition—see Russell (ed.) (1997). As I wrote in Autism and Executive Functions, I find it unconvincing as an overall theory of autism, and a bit of a blunt instrument for describing particular difficulties, but it remains an important idea.
  4. Intense experiences are at the very heart of the Intense World theory of autism (Markram et al 2010) which has important points in common with the Monotropism account. Its proponents are oddly reliant on a rodent model of autism, however, and see Remington & Frith (2014) for some very cogent criticisms, including the fact that unlike monotropism, it only seems to account for hypersensitivity in autism, where hyposensitivity is also commonly reported. Mottron et al (2006) write of enhanced perceptual functioning in autism, backing up the impression of sensory input often being both richer and more detailed in autistic people.
  5. Despite ‘restricted’ interests being a feature of accounts of autism going right back to the beginning, the nature and role of autistic interests has been chronically under-researched, and is very poorly accounted for by most theories of autism. However, see Grove et al (2018) for a study demonstrating the shock finding that pursuing their passions is a positive thing for autistic people’s wellbeing. The focused interests of autistic people are often called ‘special interests’, which is fine as long as you think along the lines of Special Interest Groups in tech, but not so much if you think of them as some weird, incomprehensible autistic thing, probably best suppressed. Mostly I prefer the term ‘passion.’
        On the anxiety front, Wigham et al (2014) found intriguing links between anxiety and repetitive behaviours. Both can be seen through the lens of perseveration, as can the way we keep returning to our interests. The idea that autistic anxiety is often associated with social difficulties is well studied—see e.g. White and Robertson-Nay (2004).
  6. This is another thing that’s usually discussed under the heading of ‘executive dysfunction’, not all that informatively. Mazfinch on Twitter has a handy list of possible reminder systems.

Acknowledgements


My partner Sonny Hallett has contributed greatly to my thinking about all this, and coined the useful phrase ‘loop of concern.’ That’s also them in the photo at the top wearing an excellent dinosaur jumper. The underlying concepts were largely formulated by my mother Dinah Murray, with Mike Lesser and Wenn Lawson. Damian Milton, Nick Chown and Richard Woods have all also contributed notably to my understanding.

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This essay was previously published at Medium.
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Why Do So Many Autistic People Flap Our Hands?

Maxfield Sparrow
unstrangemind.com


[image: rainbow colored hands in silhouette,
upraised and reaching out with joy.]
The saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands … and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can’t hear or understand it. That was fortunate as the original video was removed from YouTube.) The video explains,
“It comes down to repetition. When we, as people with Asperger’s, are in a really unknown situation or we’re in a situation where there’s a lot of anxiety […], there’s a lot of stress, the way that we manage that, is because generally it’s overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it’s going to happen the same time every time. Therefore, I get a little bit of comfort from it.”
This does not even begin to describe why I flap my hands or make other “Autistic movements.” Yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don’t flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end.  I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word “childlike” and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers, or a mansion kitchen staffed entirely by giant teddy bears.

I’d see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they’d already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy—pretty much the exact opposite of what is being taught in the video, when Asperger Experts says, “it’s basically a giant signal saying, “hey! I’m not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it.”

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I’m not comfortable and suffering is another kind of hand flap. It’s a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I’m not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I’m experiencing. I am “blind” to my emotions—I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues.

My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that’s not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts:
“You shouldn’t just try to stop it because then they’re just going to find some other way of gaining comfort. […] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that’s just even more annoying.”
No.

You shouldn’t try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say “we” and “us,” I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don’t assume someone is not Autistic because you don’t see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

The Asperger's Experts video presents hand flapping as a necessary evil—something that is annoying but has to be tolerated because we do it to soothe anxiety, and might end up doing something even more annoying if we’re forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it “might look ridiculous” or whether it’s better to “[transition] into listening to the same song over and over again, [or]  say the same thing in [one’s] mind over and over again.” the focus should be on building a society that understands that we don’t all move our bodies the same way and that’s okay.

“You know, you don’t see many people that are forty doing this [waves hands].” I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It’s okay to move differently from others. It’s okay to have a different neurology and it’s okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an “annoying tic.”

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of “just relax and be yourself,” but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent … wasted … so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong, and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax – school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don’t care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The Asperger's Expert video’s reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the “annoying” and “ridiculous” behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it’s harder to justify allowing people to be “annoying” just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap.)

The makers of the video may be Asperger’s Experts, but they are most surely not Maxfield Experts, because I’m not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don’t want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you’ve met one Autistic person, you’ve met one Autistic person. There is not just one way to be Autistic. I’m sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren’t like the description in the video but aren’t like me, either.

So when you see someone flapping their hands, don’t make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing—better even than statistically-backed guessing—is getting to know the individual Autist and learning what hand flapping means for them.  Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals; it’s good to learn general autism data, but “at the end of the day” there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that’s how it’s all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don’t hate on the flaps, don’t be afraid of them, don’t judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don’t already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person’s heart and spirit made visible in time and space for all to behold.

(Note: A version of this post was published at unstrangemind.com in 2014.)
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The Best Bar Mitzvah Boy

Todd Drezner
www.lovinglamppostsmovie.com

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.
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