9.27.2016

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

9.21.2016

There She Goes

Iz, already bored before her first day of preschool
[image: Blonde pigtailed preschooler sitting on the floor,
yawning, & posing with a Rosie the Riveter lunch box.]
Iz left for college today. An out-of-state college. A perfect-for-her college. But still a college that is Away.

I feel lucky that she's going to a quarter system University, so we got to keep her around longer than a lot of her friend's parents got to keep their own nestlings, but I'm still downhearted.

Those of you who have been reading this blog since the beginning may remember when Seymour and I were dithering over whether or not to follow her Montessori preschool teacher's advice and put her directly into first grade instead of kindergarten. At the time, we followed the teacher's advice because she was the expert and Iz was our first kid. If you find yourself in a similar position, I am telling you now, selfishly, DON'T DO IT. We could have had another year with her. But there's no undoing our decision now, and she's gone.

We spent the last few days running mundane but necessary pre-college errands, which was some decent Quality Time. We had Last Meals at favorite local eateries. We took a Last Family Selfie. It's not like we don't have official closure steps or milestones. But her leaving is still hitting me, hard.

She came upstairs to my bed this morning, before she left at her assigned ungodly hour, and we lolled about with our three cats and snuggled and talked. I think she will be okay. But, Goddess Above, I already miss her.

7.29.2016

Today! Now! Give the IACC Your Feedback on US Autism Research Priorities!

Today is the last day for Americans to submit feedback to the IACC! Please let them know your autism research priorities. Why should you spend 30 minutes filling out this survey? Listen to Matt Carey, parent of an autistic child and a former IACC member:
"The IACC (Interagency Autism Coordinating Committee) is revising the Strategic Plan for autism research. This is THE document that they produce that can influence how autism research money is allocated.

Do you need something from autism research (almost certainly the answer is yes). Let the Committee know what specifically you want. Do you want better services and educational plans for minimally verbal students? Better job supports for adults (adults who have high support needs or “just” significant support needs)? Let them know.
"This document will shape what we can hope to get in autism research. It is worth spending a few minutes. Go here: https://iacc.hhs.gov/meetings/public-comments/requests-for-information/2016/strategic-plan.shtml. Go now."
And if you need a cheat sheet, I have provided my own answers to the questions, below. Feel free to use my opinions as resources (but please do not copy my answers directly -- that would invalidate both our responses).

----

Question 1: When Should I Be Concerned? (Diagnosis and Screening



Please identify what you consider the most important priorities and gaps in research, services, and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis.

We need the re-proportion our focus (and research into and policy funding) into better diagnostic tools to find and identify autistic people of all needs, races, cultures, and genders. That means deeper investigation into and better understanding of autistic traits including but not limited to sensory issues, motor issues, learning styles, communication issues (including early access and support for diverse alternative and augmentative communication methods), and how to accommodate individual variations on those needs.

Question 2: How can I understand what is happening? (Biology of ASD)



Please identify what you consider the most important research priorities, policy issues and gaps for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD.

Research into understanding co-occurring conditions is crucial, as is promoting the understanding that treating co-occurring conditions is *not* treating autism.


Understanding the mechanisms by which autism manifests is important -- but it is not nearly as important as ensuring that existing autistic people get the supports and accommodations they need.

The emphasis and funding of research, proportionately, needs to shift to reflect real and desperately pressing needs: What are the underlying neurological, genetic, cognitive, and/or developmental reasons some autistic people are non-speaking? Why is it that autistic developmental trajectories are so different from non-autistic arcs, and how can we ensure supports reflect that often explosively punctuated developmental progress? Why are the mechanisms behind visual and auditory processing difficulties, and why do they get mistaken for behavioral difficulties? etc.

Question 3: What Caused This to Happen and Can It Be Prevented? (Risk Factors)



Please identify what you consider the most important research priorities, policy issues, and gaps for Question 3. Topics include: genetic and environmental risk factor


While causation is a legitimate pursuit from the perspective of scientific curiosity and identifying best supports, the framing of this question has worrying eugenicist implications.

Autistic people have always been part of our communities, and inheritance/constellation traits in the family tree are insufficiently emphasized in the research and education materials. Overemphasis on causation in research also directly underlies under-emphasis on areas that benefit existing autistic people.

In addition, there is very little legitimate research (and much questionable or outright fraudulent) research in the causation area, so we need more rigor in evaluating such studies.

Question 4. How can I understand what is happening? (Treatments and Interventions)



Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, technology-based, and complementary/integrative interventions.


Pharmacologic: We need more and more differentiated research in this area: Which drugs actually help autistic people, and why? Anecdotal evidence from medical professionals, autistic people, and families alike suggest autistic people have greater incidences of atypical and paradoxical reactions to many medications -- why is this, and what are alternative approaches? Does medical marijuana has legitimate applications, and why? What are the mechanisms?

Behavioral: we need better accountability among behavior professionals. Autistic people, their loved ones, and their supporters have long questioned and outright criticized behavioral practices that focus on "normalizing" autistic people -- sometimes through traumatizing means -- due to refusal understand or accommodate autistic processing, sensory, learning, and motor traits. Autistic people need better options.

Educational: Autistic students deserve educational approaches that truly reflect autistic learning styles. We also need to emphasize the difference that simple accommodations can make for autistic students in classroom settings: Providing noise-canceling headphones, respecting the need for breaks, ensuring available quiet spaces or break rooms, allowing students to move, fidget, or "stim" as needed.

Technology: We need a revolution in investigating and developing communication options for autistic people of all abilities, especially those with motor challenges and/or minimal speech. The current options are too limited and have too many hurdles to effective adoption (outdated technology, expense, user-unfriendly interfaces, etc.).

Question 5. Where can I turn for services? (Services)



Please identify what you consider the most important services research, delivery, and policy priorities and gaps for Question 5.  Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

We need better streamlining and public messaging regarding services. Too many families are not aware of available options, especially in traditionally under-supported communities. This extends to which children (and adults) are diagnosed in the first place.

Overall, the emphasis on all of these services must center on understand how autistic people think, feel, and perceive the world. No amount of research or effort will be useful if it is based on bashing a square peg into a round hole. It makes no sense to focus on wandering, for instance, without understanding the legitimate reasons why an autistic person might feel compelled to leave an area -- including normalization-based mistreatment, sensory issues such as noise or smells, hunger, need for intense activity, boredom, etc.

Question 6. What does the future hold, particularly for adults? (Lifespan Issues)



Please identify what you consider the most important priorities and gaps in research, services, and policy issues, relevant to Question 6. Topics include: health and quality of life across the lifespan, aging, transition, andadult services, including education, vocational training, employment, housing, financial planning and community integration.

We need more research into these areas. Period. We need the proportion of research to reflect the real need in these areas.

With regards to housing, we need to ensure that options like supported decision making are emphasized, and that autistic people live in, and are not segregated from, our communities -- while still getting the supports they need and deserve, regardless of level of need.

The lack of available, affordable, accessible, and appropriate long-term housing for autistic people of all abilities needs addressing immediately, and on a national scale.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)



Please identify what you consider the most important research priorities, policy issues and gaps for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.


The top priority should be collaboration with autistic people of all abilities (including those who communicate using AAC) to establish the most useful research directions, policy issues, and gaps. In term of representation of abilities: due to the inherited nature of autism, many autistic people who would be able to collaborate also have children, siblings, spouses, and other relatives whose autistic traits vary from their own. These individual and families are a rich and underused research and policy resource.

7.27.2016

Rolling Stone: Your Dehumanization of Autistic People IS The Problem

Rolling Stone just published a completely dehumanizing mainstream article about autistic people. Even worse, the article was written by a parent of a high-support autistic young man, and was given the title "Luke's Best Chance: One Man's Fight for His Autistic Son" -- as if the author is his son's champion, when in fact the father is exposing Luke's most vulnerable moments, with little to no understanding or accommodation of his disabilities. And, of course, the obligatory quotes from Alison Singer and Jill Escher about how autistic people need to be housed in group settings for their own safety, as if the autistic self-advocates who fight for desegregated housing don't care about safety as well as rights.

I am, as you might guess, furious that this kind of writing is passed off as brave, honest, and necessary. Not only does it strip people like my (also high-support) son Leo of both their rights and dignity, by depicting them as problematic subhumans instead of addressing the real crisis in the supports and services that both autistic people and their families deserve -- but this kind of ableism perpetuates the kind of socially-enabled violence that led the the murders of nearly 20 people with disabilities in Japan just days ago, as Lydia Brown reminds us:
"Ableism is the constant apologetics for family members and caregivers who murder their disabled relatives -- they must have had it so hard, it must have been such a burden, you musn't judge unless you've walked in their shoes. (In the last few decades, more than 400 disabled people were murdered by relatives or caregivers, and those are only the stories we know about.)"
Here are some thoughts from me and other people on Twitter about the harmfulness of the article. If you feel the same way, please let Rolling Stone know.

7.22.2016

The San Francisco Autism Society Deserves Better Leadership than Jill Escher. Here's Why.


Scott Badesch, President
Autism Society
4340 East-West Hwy, Suite 350
Bethesda, Maryland 20814
July 22, 2016
Dear Mr. Badesch,
I am writing to express my alarm over the unprofessional, divisive, and degrading behavior of San Francisco Autism Society President Jill Escher, and to request that the Autism Society reconsider having her lead our regional chapter.

As a fellow Bay Area parent of a high-support autistic teenager, it is extremely distressing to see Ms. Escher use her position and formal SFASA social media to openly push questionable scientific positions, belittle the needs of autistic people who can speak while making them feel excluded from the ASA community, and frame autistic people in general (and her own children specifically) as catastrophes and “damaged,” rather than deserving human beings with specific needs.
Ms. Escher demonstrated all of the positions above in a recent San Francisco AutismSociety blog post, but I'd like to highlight one passage:
“Autism has degenerated into a philosophy and personality identification rather than as the serious mental pathology. When just about anyone with a quirky or acerbic personality can be placed in the same simplistic diagnostic category as my catastrophically disabled nonverbal children, we have a scientific, moral, and practical problem.”
It is horrifying to see the president of a regional Autism Society chapter display such ignorance and ableism about the very population she is supposed to be serving. It is a basic autism understanding that being able to speak does not preclude having intensive support needs in other areas of life.  

It is also not Ms. Escher’s job to decide who qualifies as autistic. As a chapter president of an organization whose guiding principles include supporting “without regard to a person’s age, race, religion, disability, gender, sexual orientation, income level or level of need on the autism spectrum,” it is her duty to support every autistic person in the Bay Area.
And as Ms. Escher has described herself as a “science junkie,” she must be aware of the research indicating that autistic people have dramatically higher-than-non-autistic suicide rates. When an autism organization official who is supposed to be in service to the autistic population dismisses legitimately autistic people as merely “quirky” – when many of those autistic people’s lives never made sense until they received an autism diagnosis, and who don’t feel like they fit anywhere except in the autism communities – she is compounding the feelings of isolation, alienation, and depression that contribute to those elevated suicide rates.

If the Autism Society is to properly support the San Francisco Bay Area region’s autistic people as well as their families, Ms. Escher cannot be allowed to use the SFASA platform to promote her extremely harmful personal opinions and agendas. And it is simply no longer enough for your organization to issue statements that Ms. Escher's writings "are not the positions of the Autism Society."

Thank you for your time,
Shannon Des Roches Rosa
Redwood City, California

5.27.2016

Autistic Vampires: Discuss!

Source: Space Jockey Reviews
[image: Headphones-wearing, bloody-mouthed white vampire]
True Blood is my current laundry-time watching, even though it's even sillier than I'd thought possible. A few days ago Iz (whose last day of school ever was today, *sob*) and I recently talked about the infinite directions True Blood silliness takes, and our discussion took an interesting tangent when she asked me what aspects of being a vampire might complicate being autistic. So I asked friends what they thought. And the discussion was so ... delicious (like, Fae blood delicious) that I just have to share some of it here (with permission of the discussants). Feel free to join the conversation!

What Are Some Ways Being An Autistic Vampire Could Be, Well, Complicated?

  • Maf Vosburgh: [Leo's] green straws would come in handy. 
  • Corina Becker: I don't know True Blood, so I can only go off general mythos and various LARPs:
    • LARP: unless you have certain powers, food literally turns to ash in your mouth.  
    • General mythos: well, there goes sun bathing
    • Extra sensory stuff. So many extra sensory stuff. Plus aura reading stuff. 
    • Hair cuts don't stay. It regrows each night. semi-mythos/LARP. On the other hand, there are powers to make people not see you, so...
    • Emily Paige Ballou: Yeah, if I recall correctly, vampires are supposed to have super senses independent of being autistic. So an autistic vampire....
  • Matt Carey: I think of the hungry tiger of Oz. Too nice too eat others. What about the hungry vampire of Aus? A sensory aversion to the texture or taste of blood?
  • Emily Paige Ballou: Sensory challenges. Blood has a really distinctive consistency and scent, which may be difficult for an autistic vampire ... as well as the necessity of being very close to people in an intimate way for the purposes of biting them... 
  • Matt Carey: How about the difficulty of using hypnotic eyes when you don't like to make eye contact?
  • Emily Paige Ballou:Also an autistic vampire might also have a very rigid moral code which would make the whole biting people thing problematic. You might have to come up with some kind of consensual blood-sharing agreement.
    • Shannon Des Roches Rosa: This was Iz's concern. 
    • Emily Paige Ballou: I mean, there are people who'd probably be into that ... but I don't know how much you want to explain *that* to her yet... 
    • ...and the probability of being able to find those people in some of the darker corners of the internet. 
    • Shannon Des Roches Rosa: Well, she'll probably read this thread. But I'm guessing she'd find it interesting, from an intellectual perspective. 
    • Christine Langager: Maybe all of the Cullens are Autistic vampires! grin emoticon
    • Corina Lynn Becker: Yeeeeeeeaaaaah, I'm pretty sure I LARP with some of those people ...  nice people, but I'm not going near some of their conversations.
    • Emily Paige Ballou to Christine Langager: That book would've been better that way. wink emoticon. 
    • Christine Langager: Not much can be improved when it's already near-perfection as is 🤓 
    • Emily Paige Ballou: ;P 
    • Rory Patton: Their moral code may well include having the right to bite others because their own self preservation is more important and besides some people deserve to get bitten (I have a list).
  • Emily Paige Ballou: Vampires are supposed to be very seductive, but we tend to be bad at flirting.
  • Jessica Banks: I have major food texture issues, and the thought of having to drink something as thick as blood makes me gag. Also, I'm not a champion sleeper, but I think I could dig that dead from dawn to dusk thing.
  • Sunday Stilwell: My two vampires would probably love sleeping in a coffin ... all that tight, deep pressure in an enclosed space with cushy pillows.
  • Maf Vosburgh: Leo could keep the same catch-phrase, "Can I have a bite?".
  • Ruti Regan: My thought is: this is a question for Tumblr.
  • Zoe Cannon: An autistic vampire who has trouble with interaction might have trouble luring victims.
  • Zoe Cannon: A long-lived vampire might infodump about the previous eras they've lived through, and correct errors in historical fiction/movies/nonfiction.
    • Emily Paige Ballou: ...and thus be in constant danger of giving away their secret.
    • Corina Lynn Becker: or just be that really really really really really obnoxious history major.
  • Steve Silberman: In-depth research on the varietal nuances of various blood types.
  • Julia Bascom: Light sensitivity!
  • Elizabeth Noemie Bartmess: Difficulty navigating vampire status hierarchies.
  • Zoe Cannon: A vampire with a special interest in vampirism trying not to talk about it too much because it might look suspicious.
  • Elizabeth Noemie Bartmess: Difficulty adjusting to fashion trends + longer life -> clothing decades/centuries out of date.
  • Zoe Cannon: A vampire with taste sensitivities who can only stand to drink certain blood types.
    • Emily Paige Ballou: Oh my god, there are all kinds of immunological factors that probably affect the way blood tastes to a hypersensitive autistic vampire.
  • Alex Forshaw: Unconventional sleep pattern, not a "morning person".
    • Emily Paige Ballou: A vampire with N24 syndrome could really have problems ... if you have trouble getting up on time at night, but you're always racing against daylight...
  • Kevix Mark: can there be a Buffy The Vampire Slayer reimagining with Autistic vampires?
  • Matt Carey: Could a vampire have a pet bat and call it Squawkers McGaw?
  • Corina Lynn Becker: if you're a vampire with a sire and other vampires, there is often some resemblance of vampire society, which means a whole 'nother set of social rules and rituals (literal and not) to learn, with other members from all sorts of time periods, soooooooooo democracy not always a thing.
  • Seymour Rosa: Bats are naturals at flappause. So there's that.

5.25.2016

High School Graduation Looms

Iz, at 20 months, and her cousin Danielle, age two
[image: two laughing white toddler girls]
I am in denial about Iz and her cousin Danielle graduating from high school next week. And both going to colleges that, while still in this time zone, are also not very close by.



Our girl has chosen to spend her last official summer at home working a lot, and also going to a few concerts. Pretty sure that's what I did, the summer before I went to UCLA. I may have also gone to the beach a lot, which was an option in the sunny SoCal of my youth, but not so much here near San Francisco, where everything coastal is foggy, rocky, shark-ridden, rip tide-beset, or some combination of the four. I suspect she will go hiking instead.

Am writing about beaches as a form of postponing thinking about graduation. I don't understand how the arrival of this milestone happened so quickly. It's addling. It's upsetting. It's too much. Any advice on handling this transition (for me, not her) would be welcomed.

We also have to think what to do about Iz's room: Turn it back into my office, or go the AirBNB route?

4.30.2016

The Best of April (A.K.A. Autism's Hellmouth Month)

Everyone who has anything to do with autism activism or other kinds of associated consciousness-raising tends to get steamrolled by April. Not only during the month itself, but in the weeks leading up to Everything Autism-And-April-Related. It certainly doesn't leave much space for personal journaling, and it's exhausting -- especially for people who don't have a whole lot of spoons (Disability community vernacular for available energy units), to begin with.

HowEVER: Much goodness happened this month, in case you missed it:

Steve Silberman gave the UN's World Autism Awareness Day opening keynote (video, TED provided a transcript.) An excerpt:
"Talking about autism as a common form of disability that deserves lifelong support and accommodations is very different from the ways the subject is usually discussed. Typically, autism is framed as a something new and fearful under the sun, a historical aberration, the unique disorder of our uniquely disordered modern world. But the comprehensive examination of autism’s history I undertook in NeuroTribes reveals that people on the spectrum have been part of the fabric of the human community for a very long time."

[video description: White man with salt-and-pepper hair and glasses sitting at a desk at the
United Nations, behind a digital placard reading "Steve Silberman," reading aloud
about the necessity of autism acceptance.]

Other Excellent Autism-y Things That Happened This April:
And at TPGA, we observed Autism Acceptance Month by "featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives." Here's who wrote what:

Leo sitting in a chair as he pleases, damn it.
[image: White teenager with short brown hair
sitting in a car's front passenger seat
with his legs crossed and folded.]
  1. Mandy Klein talked about how it feels when one's ability to function fluctuates, but is not recognized or accommodated.
  2. Sara Luterman described the "frequent adjustments" that are necessary for her to be properly accommodated at her workplace
  3. Kathryn Hedges wrote about how noisy environments can disrupt her ability to process and function
  4. Henny Kupferstein talked about how her own autistic insights helped her guide her friend Ethan into creating videos that demonstrate his autistic perspectives, as well as accommodations that work for him.
  5. M. Kelter emphasized why listening -- really listening -- to autistic people about their experiences is a crucial accommodation, even when it's a work in progress. 
  6. We interviewed author Corinne Duyvis about her new science fiction novel On The Edge of Gone, in which a biracial, autistic, cat-loving teen girl is forced to fight for the accommodations she needs during a post-comet strike apocalypse.
  7. Queerability founder Kris Guin let us feature their poem about embracing acceptance, the spectrums of intersectionality, and rejecting shame.
  8. Aiyana Bailin described how small accommodations changes, specifically choices regarding chairs, can have "huge results." 
  9. Savannah Logsdon-Breakstone mused on getting comfortable with asking for crucial accommodations -- and setting one's own boundaries about those supports.
  10. Mel Baggs took on the assumption that all kids should be able to work and play in groups -- and that kids who can't cope with group scenarios are just being difficult.
  11. Autisticmotherland opined on what professionals need to know about supporting -- and diagnosing -- autistic parents of autistic children. 
  12. Tito Martin-Nemtin talked about the difference his noise-canceling headphones make in his ability to simply be in the outside world, without being completely overwhelmed. 
  13. Christine Langager described the frustration of often being excluded from autistic and autism-and-parenting communities when by definition one belongs to both.
  14. Sara M. Acevedo discussed how her well being depends significantly on not being exposed to scented products, yet how infrequently those accessibility rights and accommodation needs are taken seriously, viewed respectfully -- or met.   
  15. John Elder Robison talked about why accommodation is important, yet may not be enough to help autistic people like him with co-occuring conditions such as anxiety. 
  16. Emily Paige Ballou, Olley Edwards, Patricia George, Christine Langager, and Siobhan Travers (Nez Perce) highlighted the under-recognition of autistic girls, the long- and short-term effects of going without supports and accommodations, and what autistic girls and actually need to succeed and be happy. 
  17. Carly Jones (Olley Edwards) outlined her "Top five understandings previous Autistic generations did not have, that the next Autistic generation must have as standard."
  18. Amanda Forest Vivian talked about why, no, she really can't use a phone -- and how reluctant other people can be to respect and accommodate her on this matter.
  19. Kate emphasized why autism researchers need to better understand and accommodate autistic people, if they want more autistic participants in their studies.
  20. And Finn Gardiner talks about being the "truest, best self" he can be, tackling the "politics of shame head-on," and recognizing "that I could live with my autistic, black, queer, trans self without guilt just for being alive.
[image: selfie of three white females making goofy faces.]
On the personal journaling side, April was action-packed (this is a euphemism. I'm f***ing exhausted). The kids, of course, had asynchronous Spring Breaks. But at least the girls' break coincided. So we three XXs took a road trip to attend a admitted students orientation, and confirm that yes, Iz really does want to go to a college in a different state -- which I am still processing. Here we three are, blocking Mt. Shasta and its eponymous, not-totally-drained (first time in so many years), lake.

On our way, we drove through Ashland, Oregon with the intention of cheerfully harassing local anti-vaxxers -- but for some reason they weren't wearing signage, so we didn't know who they were and had to instead put our energies into a local scrumptious Indian buffet. We also listened to All The Birds in the Sky by Charlie Jane Anders, which as unabashed nerdlings, they loved (note to other parents: there are a few sexy sex scenes, and lots of salty language). Though Iz asked for occasional breaks to listen to podcasts about cyber security, how political caucuses work, and the very real corporate and bureaucratic conspiracies behind lead poisoning, because that's the kind of stuff she wants to study next year.

Leo's spring break was just me and him, running around to his favorite regional aquariums, and then down to his grandmother's place in San Diego. You wouldn't catch me in this chilly water, but he got to be beachside four times in two days, and was never less than delighted.

Leo at Windansea Beach
[image: white teenager wading into the surf.]
Anyhow. Goodbye, April. I am glad you only happen once each year, as much adventuring as we all had. I would be perfectly happy to nap through May.

3.02.2016

When The Wrong People Write About Autism: A (Preview) Review of In A Different Key

I've been trying to write a review of the new autism book In A Different Key and its media treatment for nearly two months. So here is an unbridled, frustrated, disappointed preview of my forthcoming, more measured, but no less critical long-form critique. (I live-tweeted while reading the book if you want to see my specific grievances.)

My primary issue is that In A Different Key (IADK) is so misleading, so harmful -- and presents so many outdated ableist messages about autism and autistic people as facts -- that it's hard to pick a starting point. I feel like Kevin Kline's Otto from A Fish Called Wanda, who, in practicing apologizing to John Cleese's Archie, starts out gritted-teeth polite, then erupts in expletives.

Another matter is that, as high profile mainstream media figures who use personal connections to autistic family members to validate their positions as autism authorities, authors John Donvan and Caren Zucker have for the most part openly ignored criticisms about their book. Which would make one think perhaps they're not aware, or not listening. However, my personal experience, as both senior editor of Thinking Person's Guide to Autism and as a commenter on their public editorials, is that they are keeping a close watch on all public responses to their book, and reaching out through back channels to react to, counter, or even censor criticism. Which is ... kind of the opposite of what I'd expect from mainstream media representatives. (Or maybe not, given the workplace intolerability that led to Melissa Harris-Perry leaving MSNBC.) So it's not as though they haven't been told, or heard, that  IADK is mostly getting autism wrong.

My third concern is that, as someone whose family appears in In A Different Key's more compassionate, respectful, and accurate predecessor NeuroTribes, it would be easy to dismiss my criticisms of Donvan & Zucker's book as personal or party-line bias. Except anyone who follows my work knows I'd criticize this hurtful book regardless: as (again) senior editor of Thinking Person's Guide to Autism, as the parent of an autistic teenager who deserves better than the faux-compassion and lack of understanding shown by Donvan and Zucker, and as someone who listens to autistic people themselves about autism. It's distressing to watch Donvan and Zucker actively ignore the ways in which autistic self-advocates are taking the lead and changing the world for the better -- not just for the "high functioning"autistics and neurodiversity movement leaders Zucker and Donvan ignorantly or willfully characterize as being so unlike my high-support son, but for autistic people of all ages and abilities.

I do feel like I need to draw out at least one major fail on the authors' part now, though: their stance on ABA therapy, and contrast it with the same topic's more nuanced, better-researched, and empathetic coverage in NeuroTribes.

Donvan and Zucker recently appeared on The New Yorker's Radio Hour (at 44:10, no transcript), talking about their book. In addition to claiming IADK is all about the compassion and acceptance and need for autistic-friendly spaces NeuroTribes actually demonstrates (which felt very much like politicians stealing  buzzwords from more successful rivals), and Zucker asserting "you can't call the person who's banging their head against the wall, or who can't care for himself, the same guy who has a PhD" (which would be news to supported living autistic PhD holders who self-injure, and reduces head-banging to a self-contained inscrutable problem rather than evidence that something is awry with the autistic person), John Donvan had this to say about ABA therapy:
"We do know that behavioral treaments, which are very intense and very expensive, can ameliorate some of the more limiting behaviors."
It's not like legitimate critiques of ABA are hard to find. Autistic researcher Michelle Dawson (dismissed by Ducker and Zonvan in IADK as a "former postal worker") wrote The Misbehavior of Behaviorists in 2004. Contemporary accounts of ABA traumatizing autistic children -- especially those whose motor planning disabilities do not allow them to demonstrate competence in ABA settings -- as well as those of disillusioned ABA therapists, are widely available. Yet Donvan and Zucker endorse ABA. Why? I suspect it's IADK's almost exclusive focus on how autism affects parents and caregivers rather than autistic people -- but maybe they'll respond here, and tell us.

Here, in contrast, is an excerpt from NeuroTribes about the function of "limiting behaviors," and the nastiness of ABA's design to eliminate them:
"Researchers would eventually discover that autistic people stim to reduce anxiety—and also simply because it feels good. In fact, harmless forms of self-stimulation (like flapping and fidgeting) may facilitate learning by freeing up executive-functioning resources that would otherwise be devoted to suppressing them. For Lovaas, however, self-injury, self-stimulation, and echolalia were all of a piece and equally ripe for extinction. Alone in his lab with his team of devoted grad students and experimental subjects in no position to complain, he began seeking means of punishment that could get past a review board."
Short version: Don't read In A Different Key. It's not a good book about autism. Read NeuroTribes instead, if you care about the past, present, future -- and feelings -- of autistic people themselves.

2.29.2016

Leaping

Writing from my phone, from Disneyland. Where our entire family of five visited, together, for the first time ... Ever. Because life is complicated. We are having the best time and feeling grateful.

Also: Star Tours now has The Force Awakens material. Leo recently saw TFA; it was his first-ever live action movie theater viewing. So he was doubly excited, as was his mother. We've only been on Star Tours twice so far, but I expect that number to climb today, a February Monday, when the park is not so crowded.

Also, the new disability pass system is great! Details to come.

Happy Leaping, all. We're more inching back to happiness in our family; this trip has made a big difference.

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