Looming ACA Repeal: Why It Matters to Us, and How You Can Help

Leo: sleeping during a sleep study
[image: close up of a sleeping white
teen boy's hand resting on his chest,
with a glowing red oxygen sensor
on his index finger tip.]
Leo got up at 2 AM this morning, and never went back to sleep. Why? We don't know. Though he wakes up early a lot, he is also generally cheerful (and ready to party). Except for sleep deprivation on his parents' part, this is just the way things are in our house: Leo doesn't wake early on purpose, and he needs our support whenever he's on the move. (We are lucky: I work from home and can pick up nap slack if need be, and on weekends his dad and I tag-team.)

But we still want to know what is disrupting Leo's sleep -- even though we already know sleep disturbances are common for autistic people -- and if it is related to the daytime unhappiness he's been experiencing for almost a year. So we took him in for a sleep study last month, the last in a series of appointments with at least seven specialty doctors and four different scanning/monitoring procedures.

It's been a month since he did that sleep study at a local research hospital, and, according to his referring doctor (who referred him in August, mind you) the results won't be in for another week or so. I'm frustrated, because it's been months and we still don't have answers, but this is also just the way it is. Apparently the sleep study results reading backlog is huge.

Just the way it is -- and we have good insurance. And live in a major metro area with world-class medical options and facilities. And are part of a fantastic, responsive medical group. We are 1) lucky, 2) lucky, and 3) lucky. For now.

But what if the GOP's ongoing attempt to repeal the Affordable Care Act succeeds? Will that affect us? Even if it doesn't, we know -- for a fact -- that a repeal would affect many, many people with disabilities, and/or their families, not to mention far too many other Americans. According to Families USA, the Congressional attempt at ACA repeal is:
"...the biggest threat to the health care law that we’ve ever experienced. And the stakes could not be higher. All the gains we’ve made in expanding health coverage to a greater share of people and strengthening the health care system in America are at risk."
What exactly is at stake for Leo and other members of the disability community? According to NPR,
"[Before the ACA] insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such as speech therapy for a child who never learned how to talk, or to maintain a patient's current level of function. The Affordable Care Act requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups."
So, losing the ACA will, for many, be catastrophic. But what can you do? If you need specific guidance or reassurance about how you can make a real difference, Kit Mead put together #SaveTheACA - Affordable Care Act Resources and Actions, which is a great resource list, with sections for:
  • Direct action, calling, and sharing stories
  • Tips for calling and contacting
  • Background information 
And Naomi Kritzer wrote straightforward guidelines on strategic approaches to contacting your Congressional representatives, whether they are supporting policies you agree with or not, and without throwing other groups under the bus.

And if you don't have ties to the autism and disability community -- and aren't incredibly wealthy -- you should still be worried because The ACA repeal may affect you too:
Republicans’ planned bill to repeal the Affordable Care Act (ACA), which is expected to be similar to the repeal bill that President Obama vetoed in January 2016, would provide an immediate windfall tax cut to the highest-income Americans while raising taxes significantly on about 7 million low- and moderate-income families.
This is such a distressing time. (Protip: if the current state of politics is as dismaying for you as it is for me and you haven't watched the series Black Mirror yet? Now is a really bad time to start.) It is easy to feel like nothing matters and you can't make a difference -- but you can, and the best way to do it is to take action by contacting your senators and representatives. Even if you think it doesn't matter, it really, really does.

Please use the guides above to help you take whatever steps you can to #ProtectOurCare. And thank you. Especially if you'd rather be like Leo, especially if you'd rather Just Keep Swimming.

Leo blissfully hanging in a relative's pool on NYE. 
[image: white teen boy from behind, in a lighted-up pool,
at night, with city lights in the background.


Reminder: Vaccines have nothing to do with autism. Not a single f***ng thing.

A friend recently asked me to join a discussion on autism and vaccines, in which an acquaintance was parroting, much like our ignorant PEOTUS, the misinformation that vaccines are linked to autism -- and also that anyone who says otherwise has been bought by Big Pharma. Here is my response:

Perhaps a personal story might help.

My high-support autistic son is now a teenager. I initially bought into the message that vaccines caused autism, because in the early 2000s it was not easy for laypeople to get past the media hype on the topic, and find reliable mainstream information.

Leo, a preschool-age white boy, next to an outdoor picnic table set
Post-MIND Institute Session
[image: Leo, a preschool-age white boy,
next to an outdoor picnic table set.]
I enrolled my son in a study on autism and regression at the UC Davis MIND Institute, which was founded by parents who sought cures and believed in a vaccine link. The researchers' conclusion, after reviewing my son's infant, toddler, and preschool-age videos, was that he did not regress or react to vaccines, but rather that he followed a typical autistic path of gaining skills and abilities unevenly, and in some cases more slowly than his peers.

In the meantime, researchers have reviewed data involving millions -- literally -- of kids, and found no link between vaccines and autism. Because there is no link in research, only in anecdotes and testimonials that have never once stood up to scrutiny. Not once.

And even the MIND Institute has shifted its focus to understanding and support, and away from its cure-oriented roots, because the founders' theories turned out to be scientifically implausible.

I've since spend much of my time working with autism scientists and researchers as the senior editor of Thinking Person's Guide to Autism, in order to disseminate the most useful autism information possible. I attend International Meeting for Autism Research (IMFAR) every year, and can happily report that, after years of autism-vaccine papers waning in number, the 2016 conference featured only a single poster on how lingering hoax-based vaccine-autism fears affect the immunization status of autistic kids' younger siblings.

So, no. Vaccines have nothing to do with autism. Not a single fucking thing.

P.S. My son is now fully vaccinated.


Bye, Twisty

Twist went to the big cat tree in the sky today. The veterinary staff were all kind and thoughtful, and they even let us hang out in their new spa-like goodbye room for as long as we needed to. I cried a lot. I may still be crying right now.

The vet confirmed that Twist was probably in a lot of pain even though he perodically rallied, and that it was better to not let him suffer, especially given cats' ability to mask discomfort.

We will read Cynthia Rylant's Cat Heaven tonight and for as long as we need to. We will remember that Twist was a good cat, a pretty cat, who deserved a much longer life -- but that he was adored during his short visit with us. (He really was The Best Cat.)

We will remember the good times. And I will try not to be too sad about the lack of a warm purring kitty snuggled against my back as I fall sleep.

[video description: black and white kitten trying to play with a straw held in a sleeping white teen boy's mouth.]


Post-Birthday Reality

[image: selfie of a me, a smiling white woman and
my happy teen son Leo, with sunlight streaming
from behind. I am wearing a black t-shirt that
reads "WTF?" In white block letters.]
Leo's 16th birthday made November 9th bearable. He was so excited. There were birthday pancakes for breakfast. There were cake and kazoos and singing happy birthday at school. There was enough joy to distract from the horror of the 2016 U.S. presidential election results.

[image: Leo about to blow out the candle on
a gold sheetcake birthday cake
in a darkened room.]
Mostly we were distracted with cake! There were supposed to be cupcakes, but I was shopping as the election results started to descend into the Abyss, and so was too addled to remember to buy the cupcake papers on the list I was holding in my hand. So, sheet cake. Leo certainly didn't mind. I even made one of the cakes metallic gold, as you can kind of see in the photo.

[image: Leo on a trampoline, with his arms
upraised, looking happy and ferocious.]
Underneath the happiness (so much happiness! trampolines!), << this is how I felt all day. When I wasn't imploding. Because that's what I do, I implode. I'm an imploder.

Our birthday boy, meanwhile, was so gloriously tired by the glorious birthday he'd been talking about for months that he had no interest in opening presents when he got home. Which you have to respect. Go Leo. Love you, Dude. Glad you had the day you wanted, and thank you for giving us a reason to celebrate.

So let's get back to the election itself. I have to be honest with you: on the night itself, I had a rum-and-coke at around 10:30 PM, because once things became truly grim, my only wish was to go to sleep. I had not truly believed this reality could happen, even though I was trying to be cautious and circumspect, and had been reminding people that Nate Silver's model got Brexit wrong.

The day of the campaign, during my I-need-to-stay-healthy-for-my-family hike, my path was blocked by a huge gopher snake. It was at least four feet long, and was completely stretched across the path. I am not scared of snakes, so I gently touched its tail with my foot in the hopes it would slither away and I wouldn't have to jump over it. But no, it refused to moved, and just looked at me, flickering its tongue, telling me to fuck off, it didn't care, it was probably digesting its lunch in the sun, and I could move on, or not. I got chills down my back as I stoped over it, wondering if it was a callous obstructionist omen. Now I think maybe it was. And the panic over this new reality keeps startling me awake at night.

Iz has been pissed but calmly determined in the election aftermath, but I had to talk down Mali. She asked me who I was worried about, and I said, "you." I had to remind her what Pence's hateful stances mean for her, and what his running mate's hateful stances will likely mean for her brother. And then, after she opined about possible solutions, telling her that no, we do not and cannot advocate assassination. We do not solve problems with violence. We have to respect the will of the people even if the President-elect didn't actually capture the popular vote. (At the same time, Iz was pelting us from college with Electoral College grievances.)

I worry how our youngest will react to any enabled hate at her middle school. Last week she was lucky not to receive harsher consequences for her physical, erm, chastisement of a boy who called a friend of hers a slur. I worry that she will unleash martial arts-trained fury at this kind of emboldenment:
[video: various people and images recounting discrimination-based post-election hate crimes.]

I told her it's absolutely necessary to stand up. I said that if she sees anyone intimidating anyone else for  being a girl, LGBT, an immigrant, undocumented, disabled, then she has to say something. She cannot let it slide. (She took a beat, then replied, "That's my whole school.") I said that she has to  speak up, and tell the hater, "no." And then see if she can get the victim away, to a safe place. I said we cannot ever let hate slide.

What can you do? Donate to orgs that stand up for people the President-elect will target. Work with ASAN to support and buttress Medicaid. Get educated, do not get complacent, boost the signals that need boosting. Take care of people who need help taking care of themselves. And don't be lulled into complacency or collaboration, because as a German friend of mine noted, thinking that the stressors and roadblocks of governing would temper the Nazi Party was what actually enable the Nazis to gain total power. And it happened very quickly.

[image: black-and-white cat seen from the
side, snuggling in my lap.]
I'd be interested to hear what actions you've been taking. I've been agitating on social media to the best of my abilities. I've also been spending lot of time cuddling with Twist, our one-year-old puppy-cat. It's almost amusing that, one month ago when we got his FIP diagnosis, I thought  having a terminally ill cat was the end of the world. (Though Twist was only given one to three months, he has perked up considerably and even gained back some weight; guess he's too young to have used up many of his lives).

Me, I'm leaving for Mexico for the weekend. Not as a reaction, but because this trip was planned for months, by a kind friend, who knows we've had a stress-bomb year. We'll be in the very chill Valle de Guadalupe, where many folks live trans-border lifestyles. Really wondering how much more difficult that's going to be, now. Will see what people have to say, and report back.

Take care of yourselves.

*This post was mostly written on my phone, and as Blogger.com, openly warns not to do that, I hope the formatting is not too wonky. But I'm not bringing my damn laptop on vacation.


Change: Dislike

Leo will be sixteen in two days -- or on, as I like to say, the day after The Apocalypse. He was also born two days after the 2000 election, while the Dubya/Gore contest was still ... contested. I remember the anxiety of not knowing who the President would be -- it's a miracle my milk came in -- so it's a damn good thing I'm not giving birth this week. (Wait -- maybe election anxiety causes autism? I'll have to tell Emily about that one.)

Meanwhile, I'm crossing all my fingers and toes, and voting as hard as I can for Hillary Clinton. Who actually cares about autistic people in the present and the future, as evidenced by her actually having an autism plan. As opposed to her opponent, who is the embodied eructation of willful ignorance, arrogance, and cluelessness. And who I hope loses, humiliatingly, even though he doesn't seem to be able to grasp when he's being humiliated. Because I want us to be able to get back to talking about creating a better world, instead of worrying about reality show bullies wielding real-world nuclear codes.

Leo and Victor when Leo was teeny.
[image: young white boy with short brown hair
hugging a young Latino man with shaved black hair.]
Regardless, change is hard. Really hard. We are going through an extra-strong dose of hard right now: Leo's beloved bro/physical trainer/respite aide Victor, who has been with Leo since he was little, has moved on to a different position that works better for his family. Which is totally understandable. But really hard. He and Leo were and are best buds.

Leo and Victor Yesterday.
[image: white teen boy with short curly brown hair
hugging a Latino man with shaved black hair.]
Which doesn't always happen. Leo has had a lot of people work with him who just didn't get him, and he sensed that and pushed back at them, and they left. It happens a lot, and not just to our family. Finding people who intuitively get individuals, and also understand working with autistic people, that's a specific subset.

It will be OK. Leo will be OK. Change happens, and he doesn't like it and and neither do we, but we were lucky that Leo got to have Victor in his life as long as he did. Leo and Victor have always had a strong sense of bro-hood, which was delightful to observe and always made me feel so happy for my dude and grateful to Victor. Still, much sadness.

Hector, Leo, and Victor
[image: Teen white soccer player with short brown hair
between two smiling Latino men wearing sunglasses.]
And, since Victor is the coolest and nicest person imaginable, he already brought in and trained a replacement for himself: Hector. Victor has assured us that Hector is his double in nearly all ways -- professional background, competence, chill. Leo has already started clicking with Hector during soccer, so hopefully their transition together will be an smooth one.

Fingers and green straws crossed. Also, no more change any time soon please.


Small steps towards autism acceptance.

Yesterday Leo and I were in our favorite local Latino grocery store, which also happens to be the closest place in town that stocks his beloved Rosa (no really) brand whole wheat tortillas.

During the checkout, Leo was being his usual exuberant self. The Latina cashier greeted him pleasantly, with a genuine smile, and asked his name. He whispered it. Then giggled. She seemed to want to know more about him.

I switched to my crappy Spanish* because I never know how these conversations are going to go, and I don't want Leo to hear people say that they're sorry he exists, and said -- also pleasantly -- "Yes, he's autistic."

Her face fell. But before she could say she was sorry, I shook my head to indicate that she didn't need to feel bad for him, and said with a a smile, "It's not a problem. And with family, everything is possible."

She smiled back, and said "And with God, too." I smiled and nodded, because we all draw on whatever resources power us best.

So that was nice. Not because I think I converted her to any way of thinking, but because she was receptive to hearing about autism acceptance. That doesn't always happen, not with strangers.


*Mali will no longer let me speak Spanish when she's around, because she says my accent sucks. She is not moved by my argument that my accent would suck less, if she'd help me practice.


You CAN Choose Where You Want To Live, If You Have Autism

Little House on the Lane
Photo © Serena Snowfield/Flickr. Creative Commons License
[Image: enhanced photo of a cozy cottage behind a flowery garden.]
The San Francisco Autism Society recently published a rather alarmist article on autism and housing issues written by their president, Jill Escher, titled "You Can Choose Where You Want to Live... Unless You Have Autism." Here's a characteristic excerpt:
"Almost every autism family I know is panicked about their children's futures. If we parents were immortal, it would be one thing. But we are not. We will inevitably decline into decrepitude and disease, and then die. Our children, who are often extremely intellectually disabled and in need of continuous care, will outgrow our capacity to care for them, and then outlive us by many decades.

"It's a terrifying prospect, but when it comes to autism-appropriate residential options, the landscape is not only bleak, it's about to grow bleaker. Adult autism cases are surging — California's, for example, will quadruple to about 100,000 within 20 years (and that includes just the more severe cases) — but former stalwarts of the developmental disability care system, including group homes and care facilities, are all too often closing or slowly being de-funded. For many autistic and developmentally disabled adults deemed "at risk of institutionalization" due to the severity of their limitations, this leaves only one viable alternative: private residences.

"But now even private residences are under fierce attack. Using convoluted and unlawful methods, the Centers for Medicare and Medicaid Services (CMS) is seeking to deter the development of private disability-friendly residential projects across the country by threatening to label them as "noncompliant" with vague Medicaid rules. Rules, I might add, that CMS lacked the authority to enact in the first place."
Unfortunately, this post is misleading on several points, including waiting lists, policy, and legal jurisdiction. I am worried that, because it presents opinions like "private residences are under attack" as fact, and uses outright fudging like "unlawful methods," it may influence families with limited resources to make housing plans or choices that are not in their family members' best interests.

Here is an attempt to clarify some of the post's factual errors, and and hopefully diffuse some of the panic that readers may be experiencing.


Parents like me and Ms. Escher have every right to be concerned about the trickiness of ensuring our autistic kids with the highest support needs get the living arrangements they deserve as adults, whether we parents are able to be in their kids’ lives or not.

The official housing policy guidelines can be overwhelming and dense, and many of us need guidance to understand them. But we owe it to our kids to know what their rights really are — because I worry that people read posts like this and become terrified and lose hope, without exploring or understanding the actual options available.

Please know: there are no waiting lists in California for adults who qualify under the state’s guidelines — autistic people who need significant support in at least three areas of their lives. In other states, there are enrollment caps for people with medicaid waivers, but The Department of Justice recently issued a Statement of Interest that this may violate the Americans with Disabilities Act (ADA), so hopefully this will be addressed in other states soon.

So it’s not because the tools to create great options for adults aren’t there. And of course, it is hard work to research, learn, investigate, plan, and ensure our kids are set up with the lives they both want and deserve. The existing policies (Lanterman etc.) that allow for supported decision making and limit institutional settings mean that we have to spend time exploring and evaluating, and in some cases creating, the right environments with our children.

It’s also important that parents understand the services available for adult children to continue living at home. IHSS and other services are set up so that adult children who need full-time support can live at home, should families choose that option -- a valid and desired option for many.

The regulations Ms. Escher is concerned about are not meant to abolish group homes: people who rely on public support can still opt for the arrangement that suits them best. Rather, those regulations are to ensure that group homes aren't essentially institutional in nature – to ensure residents have private rather than shared rooms, for example. (This is important for autistic people who are particularly exuberant and/or have sensory sensitivities that make sharing a bedroom a challenge). There are far too many examples of why institutional-like settings put our beloved family members at risk of neglect and abuse.

Housing options for individuals with complex needs in this state (California) are not dwindling. And while we still need to work on getting cost-of-living increases built in, funding has increased enough to take the edge off in many cases: regional centers were recently the beneficiaries of a bill that is increasing funding to all service providers and facilities. New homes are being built. You can see for yourselves the most recent spate of awards -- in the Golden Gate Regional Center region alone, where my son and I live. Also, there is currently $15 million to help regional center service providers and vendors comply with the newest HBCS regulations.

Also, CMS's jurisdiction over the types of setting where HCBS are used is legitimate as outlined in the statute, and does in fact follow the administrative procedural act – they are not required to go through a separate notice and process comment about enforcing this rule in specific situation. Again, the idea is to ensure that HCBS funds are not used in settings that have "institutional" aspects, in keeping with the new regulations. More details: https://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/home-and-community-based-services/downloads/home-and-community-based-setting-requirements.pdf

I realize that Ms. Escher and the people who work with her on housing issues want our children have the best housing options possible when they become adults. But we owe it to those loved ones to make sure we use accurate information during the long and crucial process of securing homes that allow our adults-to-be to not merely live, but thrive.

More California State policy info:
Necessary General Housing Reads:


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.


Slide One reads:
Autism and Medical Care: Best Practices
Shannon Des Roches Rosa
Thinking Person’s Guide to Autism
[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
•Motor Processing
•Meltdowns vs. Tantrums
“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:

•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


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.


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.

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