Autism and Health Care: Excerpts From My Patients 2.0 Presentation

Video description: Red-headed white woman (me) giving a presentation on
autism and health care at a professional conference.
Periscope video is low resolution and sideways, apologies.

I was honored to be invited to give a presentation on Autism and Health Care at the Patients 2.0 conference this past weekend, as part of the Health 2.0 2016 Conference in Santa Clara. The hosts took a partial Periscope video recording of my presentation, so here 'tis. Please share if you find any part of it helpful.

Transcript

Slide One reads:

Autism and Medical Care: Best Practices

Shannon Des Roches Rosa
Thinking Person’s Guide to Autism
@shannonrosa
www.ThinkingAutismGuide.com

[Periscope video and audio begin after the introduction, in which I talked about being the parent of a high-support autistic teenager, and the fact that the Thinking Person’s Guide to Autism community includes autistic people as well as parents and professionals, and that we are very informed by autistic perspectives]

[Talk begin mid-sentence]

“…that people can’t access the kind of care that they deserve, and that they need, because of lack of understanding of what it means to be an autistic person in a healthcare environment. So even though I’ll be talking about the autistic experience in general, a lot of these things are relevant to health care.”

----

Slide Two reads:

Autistic People: Wired Differently

•What is Neurodiversity?
•Autism as Disability
•Autistic Heterogeneity
•Functioning Labels: Not helpful!

“The most important thing to know about autistic people like my son is that they are wired differently. That is what Neurodiversity means. If you’ve seen Steve Silberman’s book NeuroTribes, if you've read that, it’s basically the history of how autistic people have always been here, and it’s just that we are now able to recognize who they are, the diversity of ways in which autism presents in individuals, and that autism is not a necessarily a disease ... I mean it's NOT a disease.

“That is what neurodiversity means. If you talk to some one like Steve Silberman, he likes to say that it means “not all great minds think alike.”

“And so if autism is not a disease, what is it? Well, it’s a disability. And when you have a disability, what you need to function in the world are accommodations. And unfortunately, because autism is often perceived as a disease, or considered something willful on the part of the autistic person themselves, these accommodations are too infrequently given.

“I know this because with my son personally, I have had a lot of difficult experiences with health case, and I know I'm not alone. I'm not sure how much you already know about autism -- but even though there are various schools of thought about autism as “biological disorder” being caused by "leaky gut" issues or all other kinds of pseudoscience, what is actually true about autism is that autistic people, like anyone else with a condition or a disorder, can have a lot of co-occurring health conditions -- those can accompany autism, but they don’t cause autism. Because autism is neurology, autism is the way your brain is wired.

“And that plays into the concept of autistic heterogeneity, and you’ve probably heard the phrase 'if you’ve met one autistic person, you’ve met one autistic person.' And what that does mean is that while there are a number of common autistic traits, that doesn’t mean all autistic people are going to have them. So you have have somebody who is intellectually gifted but non-speaking, and you can have someone who is developmentally [I meant intellectually] disabled but fully conversational. It really depends on the person.

“That’s why things like functioning labels like “low functioning” autistic person or “high functioning” autistic person are not really helpful. In a health care scenario, if someone is considered “high functioning” then people assume, “oh, what’s their problem? Why can’t they deal with this? Because you’re so high functioning, you can have a conversation, obviously you should have no other problems.” That means their disability is actually ignored.

“Then when you say that somebody is “low functioning,” somebody like my son, well, watch out — because if you think that he doesn’t know what’s going on, then he’s basically going to take you for a ride. He’s completely aware of everything that’s going on around him, even thought he’s technically considered non-speaking and he’s technically considered intellectually disabled. He understands everything that’s going on around him, and God forbid you leave a piece of pizza or mention something that’s going to happen later that you don’t want him to know about — that’s on you.

“So, functioning labels are not helpful.”

----

Slide Three reads:

Consider The Autistic Experience

•Sensory Processing
•Auditory Processing
•Eye Contact
•Echolalia
•Dyspraxia
•Motor Processing
•Meltdowns vs. Tantrums
•“Behaviors”

“So, functioning in general, being in the world in general, but also in a health care scenario, we really have to consider the autistic experience. There are a number of traits that are not necessarily common to every autistic person, but are very common for autistic people in general.

“Those are things like sensory processing. What that means is that we have the five senses: hearing, seeing, touch, all of those things are either under responsive or over responsive. So it can be absolutely excruciating for an autistic person to be in a room that has this kind of echoing sound that we have right here — so they might need to have noise-canceling headphones to be able to function. They might be able to see the fluctuation in a fluorescent light in a way that somebody who’s not autistic would not even notice, and it might make it completely impossible for them to function in something like a medical waiting room, or in a medical office. So if you’re trying to have an exam with someone who comes in for some other medical condition, and they can’t even handle being there, then the option is to provide different kinds of lighting, things like that.

“Auditory processing is another issue; a lot of autistic people have processing delays. This is why a lot of autistic people rely on closed captioning when they watch videos, or when they watch movies, because that allows them to process everything visually, as opposed to processing them visually and auditorily at the same time. And this is another reason why a lot of autistic people prefer to communicate visually, prefer to communicate via text; or it’s nice for kids if you have things like visual schedules to help them understand what you are saying.

“Another thing is eye contact. People are always talking about how “we need to teach autistic kids to make eye contact.” Well, that’s not helpful. A lot of autistic people, because of these processing difficulties, can either give you eye contact or they can pay attention — and you need to choose which one you want. Because it’s not necessary to make eye contact even though it is socially desirable; and for a lot of people it’s not necessary to do for someone to know what’s going on.

“Echolalia is another thing, that means scripting, so a lot of time people may talk to you using pre-prepared phrases like movie quotes, or quotes from books — and anyone who’s every had the movie Caddyshack quoted at them knows non-autistic people do this, too. But a lot of time with autistic people this can be a form of functional communication, so they don’t have to think about stringing all the words together — they can just grab their set phrases, use them, they work, everyone’s happy.

“Another item that’s really important is dyspraxia and apraxia, or motor processing. A lot of times when autistic kids and people don’t speak, that doesn’t necessarily mean they don’t understand. What it can mean is there’s an apraxia, a motor control issue that prevents them from being able to speak. And so in those situations you need to make sure they have correct communication supports, so that they understand what's going on, and they can communicate what’s going on with them correctly.

“This is also why things like Applied Behavioral Analysis can be problematic, because -- and I don't know if you already know what that is -- if you have an actual motor control issue, then you’re not going to be able to respond to commands like “touch nose.” You can hear the person say “touch nose, but you can’t do it. And so that's related to motor processing."

[video ends, but I continued to discuss the topics on the slides not featured in the recording]

----

Slide Four reads:

Autism, Aggression and Self-Injury: Approaches
[Note: This section drew heavily on Dr. Clarissa Kripke's talk Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices]

•Primary Approaches
  °[Ensure an] Autism-Friendly Environment
  °Physical Exam [Medical reasons for "behaviors" are too often overlooked]
  °Exercise [So helpful for some]
  °Communication Support [mandatory for anyone with a communication disability, whether communication needs are intermittent or ongoing]

•Secondary Approaches
  °Medication [fighting stigma, consider autistic tendency towards paradoxical reactions]

----

Slide Five Reads:

References

•Dr. Clarissa Kripke: Director, UCSF Office of Developmental Primary Care: odpc.ucsf.edu
•Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices: www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html
•AASPIRE toolkit: www.AutismAndHealth.org
•Dr. Steven Kapp: Respecting Neurodiversity in Therapy: bit.ly/2cTexhB

The Intelligent Way Leo Hauls Trash Cans

Hauling trash cans at our place is a bit of a pain. The cans are large and heavy, and they need to roll down a long, steep driveway. Most smaller people haul them they way the girls are doing in this picture -- backwards.

Adults, however, turn around, push their can down to the position of Mali's can, and hold and pull it behind them as they walk forward down the driveway. All of this is fascinating to you, I'm sure. But it's important background information.

Because yesterday Leo helped me haul the cans down the driveway. And instead of wrestling with his can, trying to push it down the driveway, or defaulting to the girls' backward-pulling walk, he stopped for a moment, carefully observed the way I had positioned my own can, and then imitated my pulling technique exactly. I did not give him any instructions or prompts -- he did this all on his own.

You could almost see the intelligence crackling and sparking around his head. He was thinking, and thinking hard, and problem solving, and doing it independently. It was a small moment, but it struck me deeply. It's the kind of demonstration of ability that tends to get overlooked, precisely because it was not communication-based. And it makes me wonder exactly how much of an iceberg Leo is -- what we can see of his ability, as opposed to what we can't see. And how frustrating that must be to him.

It's one of the reasons he's in the middle of a full AAC evaluation -- to ensure that he has the opportunity to demonstrate what he knows, and what he can do, and tell us about it to the best of his abilities. So he can tell us what he wants, how he feels -- so he can communicate with us, and everyone else, on his terms. To the fullest extent of his terms.

I'm not banking on an Ido-like communication breakthrough -- though that would be wonderful (for Leo most of all) -- because Leo is Leo, and should not be held to anyone else's standards. But we owe it to him to find out exactly what those standards are. I hope we don't let him down.

Listen to Leo!

My mother, bless her tolerance for chaos, went home today after spending a week with us while Iz soccer tournamented, Mali was a hip hop Snow White dwarf in her school play, and we accompanied Leo and his class to a local Winter Wonderland festival. I don't know if Seymour and I would have survived the week without a third parent. We certainly wouldn't have had any clean dishes. My gratitude, it is boundless. Without boundaries. You ever want to see me do backflips, come over and help out in our kitchen.

My mom was also helpful with the never-ending food prepping -- Iz is vegetarian and Leo and Mali have divergent takes on super-pickiness, so unless we're having cheese pizza there are always at least two tracks for every meal. And lately those tracks were accelerated, given all the activities (Mali had play practice every single night until 9:30, then three performances; Iz has soccer practice 3x/week plus tournamenting; Leo had several sessions with Therapist V). So sometimes we got a bit rushed and inattentive. Which Leo doesn't put up with, if it imperils his meal. Doesn't put up with, at all.

Example: Last night we went to my cousin's house for dinner. Which was to be ribs. Which Leo will eat when hell freezes over. So before we left, my mom  offered to make Leo a PB&J sandwich to take with us. But Leo wouldn't let her get on with it -- he kept running back into the kitchen, getting in between her and the counter and telling her "Peanut Butter!" and we kept shooing him out, asking him to let us finish the sandwich so we could get out the door. Except after the third or so pass -- during which time no sandwich got made -- I realized that my mom had accidentally taken out the almond butter instead of the peanut butter -- and Leo does not eat crappy-tasting almond butter unless he absolutely has to.

It's not Leo who was operating at a communication disadvantage last night.

We apologized to Leo and went on our way, and had a lovely evening. But it was a good reminder for both me and my mom to really listen to Leo when he's trying to communicate, even when we're in a hurry. Because he's usually the one who's right.

For New Autism Parents: On Gratitude

Leo's passed the eleven and a half years mark. I feel like I'm finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary "easier" alternate reality society thinks I'm supposed to pine after. This means I think a lot about the information and attitudes I'd have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be.

And that's silly -- neural enhancements aside -- because instant downloads do not equal instant attitude adjustments. There's often no substitute for experience constructed out of progressive, natural epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to positive attitudes and helpful perspectives; they shape our final outlook as parents and as people. So I'm going to dole out some perspective, and attitude.

I think a lot about gratitude. Appreciating what I have -- and I have a lot, as does autism parent Marie Myung-Ok Lee. Appreciating Leo and his sisters for who they are. Thinking about what we do have, what we get to do (see local hike photos below), and recognizing the poisonous futility of dwelling on what we don't.

Leo does love benches along the trail

It's understandable for people new to the disability community to dwell on not-having. Our society stigmatizes disability so vehemently that it's often difficult to see this new scenario through any lens other than that of exclusion and unfairness. Until you step back and realize that all of life is not-having, if you make the choice to view it that way.

Early evening summer hike

A frivolous example: I can't take Mali to this weekend's Mary Poppins singalong because Seymour will be out of town, Leo wouldn't like the decibel level or chaos, and I can't justify a babysitter (Iz is hitting the back country trails at high Sierra camp for two weeks). I'm bummed, but I also accept that parenting in general means not doing a lot of stuff I'd rather do. Missing a movie is no different from the hours I spend not-having experiences and options because of the choice I made and time I put into to being a parent. Yet I'm encouraged to chuckle over and commiserate about typical parenting drudgery, while anything having to do with parenting Leo is perceived as either noble or tragic. Which is unfair and uninformed, as what we do for Leo is simply what we do, because of what he wants and needs. Just like what we do for his sisters.

Manzanita berries

Is parenting Leo different than parenting his sisters? Sure. Are parts really damn hard? Sure. Is parenting him harder than the unfixabilities of raising a neurotypical child who cannot retain friends, or who gets pregnant at fourteen, or who is an ungrateful, entitled, unapologetic, dismissive jerk? Now that I've been doing this for a while and we have defined our own happiness, I don't think so. I look into my beaming, affectionate son's eyes -- they are gorgeous -- and wonder, why is anyone supposed feel sorry for the two of us, in our contented companionship? I'm grateful that this beautiful boy is my son.

Poison oak can be beautiful, too

I suspect some of the pity we get ladled with has to do with communication. Leo's is atypical,  speaking and articulating are a challenge. But as I watch multiple marriages flame out around us -- many with little thought for the children involved, except as extortion crowbars, and all sans significant quality-of-life issues -- I have to wonder: what exactly does the ability to communicate typically guarantee? Especially when listening is not prized equally? Leo listens well. He's not much for abstract concepts, but he's present, and he understands, and he acts directly on what he hears. He always tries to get it right. Who should you feel sorry for, again?

Found structures along the trail

I wish I'd known how important gratitude is, earlier. I wish I'd had someone shake me by the shoulders and to tell me to focus on my giggly, sweet Leo and what he can do, on helping him do more, on putting my energies into on helping him build his best possible present and future. On searching out role models in both the parenting (what it's like to be Leo's mom) and autistic (what it's like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo's godfather Michael calls "attitude recalibration."

210° panorama from the hike's hilltop. Embiggening encouraged.

We've been fortunate enough to find those communities, and for that and for so much in our lucky, lucky life -- I am grateful.

Leo Stands Up for Himself

Oh yeah, it's soccer season. Leo is thrilled!

It's been mind-explodingly and productively busy here lately, but I wanted to note two significant Leo stories. They're important. He deserves witnesses.

First, he ended a tickle session with me not with his usual pushing away or even an "all done," but by saying loudly and firmly, "Stop it!" This is clear as hell, and lets our boy stand up for himself in a way that needs no interpretation. Very, very glad.

Second, at school, he got upset about putting the class place mats away after snack. He complained loudly about the place mats all day long, and the class staff couldn't understand why -- until later on they realized that two of the place mats had slipped off the back of the table and fallen on the floor -- where no one except Leo had noticed them. They let him put the place mats back, and his world realigned itself into a place where he could be happy. Glad he got to follow through, finally.

Our boy, he can stand up for himself. It is a relief, and I am proud, and that's about that.

Good Day or Bad Day? Revisited

Here's a visual follow up on Worst Day/Best Day, as illustrated by Leo:



Leo drew this happy face and wrote his name spontaneously after a day in which we went hiking, went to his favorite restaurant for lunch, and on his first day out of school. What a happy, happy face he drew! I didn't necessarily associate it with having a good day; I figured this iteration of a happy face was his standard version until...



...we had a bad day. He and his sisters didn't get along, we didn't get to go on a hike, I had to drag him on unexpected errands after he was already done erranding for the day. After we finally came home and he got to relax for a bit, I had him do a few activities (dot-to-dots, simple mazes), then had him turn the printouts over to draw on the back.

First he drew the decidedly UNhappy face in the upper left-hand corner.

I said, "Leo, can you draw a happy face?"

He drew the unhappy face on the top right.

I drew the happy face in the lower left and said, "Leo, this is a happy face. See the smile? It's like a U. Can you draw a happy face?"

Leo drew the still very unhappy face in the lower right hand corner. He knew exactly how to draw a happy face, but sure as hell wasn't going to do it if he wasn't feeling happy!

Excellent communication, methinks. Smart boy.