Worth Your Read: Hospital Equipment is an Auditory Nightmare

https://www.nytimes.com/2019/07/09/science/alarm-fatigue-hospitals.html

I've complained about hospitals before, particularly hospital rooms.  This article is a much more indepth explanation, complete with examples, of the auditory end of things.  Apparently you needn't be autistic to be horrified by the experience.  Trained musicians, or even just ordinary people, don't enjoy it either.

When I visit people in the hospital, I'm nearly constantly aware of beeping, rumbling ventilation, carts, doors to patient rooms left wide open, staff loudly talking in the halls, and other machine noises like the IV machine's clicks.

I found the examples helpful to illustrate what they were talking about, and particularly enjoyed the Care Tunes Demonstration video near the bottom of the article.

I suspect making these changes would involve a lot of retraining, a lot of replacement costs for machinery, etc...  But I also suspect turnover wouldn't be nearly so high in those professions if being in hospitals wasn't so horrid, and the patient recovery statistics would be so much better.

I can definitely say that my own recovery in a hospital would go a ton better if I had CareTunes to listen to, rather than the barrage of suffering-inducing beeps and trills I've heard in the past.  I would find the hospital a less terrifying, painful, emotionally-damaging experience.  I think the same is true of most sound-sensitive people, and perhaps even most people.

Reading the Research: The Exclusion Cycle

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article snapshots a self-sustaining cycle found in schools and other groups.  Honestly, I wouldn't limit this to young people, that area of life just happens to be where this research was focused.  It's more obvious with younger people, because younger people usually haven't learned to be as subtle or diverse about their exclusion.

The cycle can start at either point.  A person comes into a social group, like a grade at school.  Perhaps they have additional challenges, like autism or ADHD.  Perhaps they're simply from a different culture, or speak an additional language.  They may or may not be suffering mental illness at this point, but the other people in the group don't understand them, and so avoid them or even mock or bully them.  

This person is thus excluded.  The exclusion is emotionally painful, causing depression and anxiety as the person tries to make their way in the group.  Over time, and with repeated failures, mental illness develops.  The mental illness makes the person even more different than before, which alienates them further from their peers...

And thus the cycle repeats.  It doesn't actually matter if the newcomer has mental illness to begin with.  Given a typical group, this cycle repeats forever.  It needn't do so.  Influential individuals within the existing group can halt this cycle before it begins, or even after it's gotten into full swing.  Diversity training and anti-bullying training can help change the group such that all the group members are more tolerant of differences.

In truth, the latter situation is what I'd prefer.  Teaching people that differences aren't scary, that skin color isn't something to be worried about, that other languages are just new opportunities to learn to say things you couldn't otherwise say, and that different people have different strengths, is the most important thing I think people should know.  
  
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Worth Your Read: On Applied Behavioral Analysis

https://theaspergian.com/2020/01/11/an-open-letter-to-the-nyt-acknowledge-the-controversy-surrounding-aba/

This is a long article, but a really good one in terms of addressing the issue of ABA.   There are many reasons to be wary, not the least of which is how poorly most adult autistics who've been through it, view it.  If you can't take the word of people who've been through it, particularly when you've never done it yourself, I kind of don't think you're listening.  And if you're not, it might be wise to ask yourself why.

I particularly liked the section on animal training, which was a new take on the ABA debate to me.  One would really hope we could break at least even with current animal training methods for working with other humans, but autistic people are apparently sub-animals as well as sub-humans...  at least to some people.

The (lack of) training issue for ABA therapists was also an excellent point.  I can attest to it, in fact.  While the ABA clinic I worked as a secretary for years ago didn't just take whoever they wanted off the street, that was absolutely an option.  It was their discretion to hire people with some background in autism and an interest in ABA or at least psychology.  Even so, I wouldn't have wanted to go through that therapy, even at that facility.

Consider also the sections on eye contact and apraxia.  I, personally, find eye contact unpleasant and mildly distracting.  Meaning I learned to do it anyway, but never like it.  Imagine it was completely destructive to your train of thought, you couldn't hold a conversation while doing it, but nobody will listen to you unless you do it.  Would that really make you want to try doing it?  It makes me feel terrible just thinking about it.

And apraxia, where stray electrical signals and your brain and body just do things, without your consent?  That's awful to have to put up with, let alone someone else deciding you need to be punished for it.

Please give this article a read.  It's very worthwhile.  

Reading the Research: Missing Voices

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article underlines the unheard voices in the autism community.  The rates for autism in black and Hispanic communities are at least as high as in the general populace.  Historically the rate of diagnosis has lagged, possibly because of the expense of a formal diagnosis.  The article also notes cultural differences and communication barriers may play a role.  Implementing universal screening, where every child is given a cursory check for autism by a certain age, would help eliminate some of those differences in diagnostic rates.

I have mixed feelings about universal screening.  On one hand, getting the answer to "why am I so weird?" young can be extremely helpful.  You spend less time wondering and more time actually learning how to co-exist with people who are different than you.  You can also get specialized help with your specific issues, rather than being left to flail and succeed or fail without support.

On the other hand, our current school system sometimes decides autistic children have to be segregated for their entire school experience.  Even children that would do fine in a standard classroom with just a few or even no accommodations.  Part of the reason I got as far into life as I did was because I didn't have that answer to "why am I so weird?"  I was simply expected to perform in a general classroom, and I did, because I was fortunate enough to have the family stability and resources to allow that to be an option. 

The ideal answer is probably "implement universal screening," "change the schooling system so it teaches relevant and necessary skills as well as academics," and "change the school system so full inclusion is the norm."

That's neither an easy task nor a simple one, so the last thing I'll leave you with is an idea I saw on Twitter in the last couple days.

A friend once shared what she called the Parable of the Choir: A choir can single a beautiful note impossibly long because singers can individually drop out to breathe as necessary and the note goes on.  

Social justice activism should be like that, she said.

That's stuck with me.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

I Visited the Autism-Friendly Sesame Street Park in Florida

I went on my first vacation in three years (since the honeymoon) this January.  It was to Orlando, Florida, to see the video game charity event, Awesome Games Done Quick, for most of the trip.  We did make one theme park visit, and it was Seaworld, the one with Sesame Street, the ostensibly autism-friendly park.   It was winter, but winter in Florida apparently means high 60s to low 80s, which is late summer where I come from.  So there were few to no lines and comfortable temperatures: a win in my book.

I'm just going to start by saying Seaworld overall is distinctly not autism friendly.

It is consistently loud.  They have music blaring in from everywhere, especially restaurants, animal exhibits, show areas, and shops.  As you traverse the park, you move from one noise zone to the next, with no respite between them.  The quietest areas were on the edges of those zones, but at those points, you could hear two zones at the same time, in a dueling stereos effect.  This is not even counting the other park-goers, with their shrieky small children.

I wore earplugs basically the whole time and would recommend others do the same.  Even my neurotypical spouse wore earplugs the whole time simply because he found it more comfortable.

If you do end up visiting, I did manage to find a quieter area to eat.  The Spice Mill Burgers area was only loud because of the people in it, and some of those moved on while my spouse and I were eating.  So I was able to take out my earplugs there for a bit.  I expect during the summer and higher tourism times, it would be significantly louder, but the fish filet was both large and surprisingly excellent.  They also offered an Impossible (meatless, but tasty) Burger, which I was very pleased to see.  The bun and toppings both sandwiches came with were food service standard mediocre, of course.  It's cheap(er) park food, what do you expect?

Speaking of which, I did not see gluten-free options at any of the Seaworld food spots I stopped by.  I know Seaworld itself isn't really dedicated to accessibility for all, just Sesame Street, but I'd kind of hoped the latter would infect the former.  There did seem to be dairy-free options, like my fish filet, and a lot of "normal" kid-friendly food, like chicken nuggets and fries and such.  I suspect the dairy-free options were more incidental than purposeful.

Into Sesame Street

Nearish the end of the day, we did make it to Sesame Street.  I can't say I was overly comfortable, a childless 30-something walking through a kids-and-families-area, but I was feeling overwhelmed, wanted a quiet place to rest, and figured that while Sesame Street was technically geared towards children, autism is autism.

Sesame Street is located on the far right, meaning you have to pass through most of Seaworld to get there.  I cannot stress this enough: most of Seaworld is very sensory-unfriendly.

The front gate of Sesame Street Park at Seaworld.  Elmo and Cookie Monster statues guard either side.  The lighting was not in my favor for this shot of the front gate.

A main road leads into Sesame Street in Seaworld, with storefronts on the right, and rides on the left.  The park itself was a lengthy inverted D shape, with a main road and a side road for kids rides, extra attractions, restrooms, and other services.

A signpost at Sesame Street in Seaworld, with directions to restrooms, first aid station, baby changing area, the Infinity Falls ride in Seaworld, and the autism-friendly quiet room.  There were a few of these signs off the main road, pointing you mostly to services, rather than rides.

The family services building at Sesame Street in Seaworld.  A sign out front directs you to enter the front for baby care, and the side for the autism-friendly quiet room.  The sign here was a little unclear.  After going past the building and all the way to the other end of the park, we finally figured out they meant "the back door is closest to the Quiet Room" not "keep walking this direction 'til you find it."  I was annoyed.

Sesame Street has exactly one quiet room, which was part of a larger facility to support families.  Included as other rooms in this facility were a changing and nursing room for mothers, a more comfortable enclosed sitting area, a microwave and sink, and various shelves and cupboards.  The lighting in all rooms was overhead, living room-like light fixtures with incandescent bulbs, rather than more typical commercial/industrial fluorescent lighting.

Inside the family services area at Sesame Street in Seaworld.  An incandescent overhead light shines over a sink, microwave, seating, shelving and a high chair on a hardwood floor.  Also a lounge area, baby changing space, and a nursing area... It was surprisingly well outfitted.  I could, of course, have asked for even more stuff, but seeing all this was a surprise.  It's not like the park makes money off having these offerings here.

The hallway off the main room in the previous picture.  A trio of doors lead to the autism-friendly quiet room, the nursing room, and the restroom, while an open archway leads to a main room.

Eventually I made it to the quiet room.  Like the main room, it was lit with an incandescent home overhead light thingie.  It's not really a chandelier, being far too small and simple, but that's the only word I can think of to describe it.

It was a relatively small room, and I had trouble getting a proper picture of the whole thing.  The room had bits and bobs available.  The bean-bag-esque cushions there seemed comfortable, though I didn't actually sit in them due to paranoia about germs.  The wooden box-thingies would serve to either climb on or hide within, either of which seems reasonable.  The overhead lights could be turned off (so I did).

A textured wall toy, one of two such toys.  At least 15 different texture were available for stimulation-seeking children.  I was impressed, even if I didn't touch due to fear of germs.

A more typical children's toy, fastened to a different wall.

The quiet room was not silent, and you could hear the nearest ride outside (Minnie Mouse instructing kids to pay attention to some kind of nature kiddie coaster).  It was, however, significantly quieter, and I was able to take out my earplugs and relax somewhat.  Out of curiosity, I turned on my tablet's decibel reader.

Readout from a decibel meter in the Quiet Room at Sesame Street in Seaworld.  Average decibels 48.6, maximum 58.  Fairly quiet as things go, but not silent.  The spikes in the graph were due to children and the ride outside.

And here's a recording taken while waiting for the killer whale show at Seaworld:

As you can see, the Seaworld pre-show was about 40 decibels louder than the main area, which... if that doesn't mean anything to you, it's about 16 times as loud...  or the difference between me suffering and me feeling kinda okay.

Sesame Street itself seemed quieter overall than Seaworld, though I don't have the data to back that up.  It still definitely had zones of noise that you could travel between, even at the family services area.

My last thought on the Sesame Street area was the food.  We visited in winter, so most of the food options were closed.  They did seem to offer the usual sugary and white flour-laden badness, but I also stepped into a couple store areas and found these:

Refrigerated food and drink offerings at Sesame Street stores, including cheese sticks, yogurt, hummus, fruit cups, cracker/cheese/meat snack boxes, and veggie/fruit/cheese snack boxes

It's a bit of a mixed bag, with dairy, sugar, and glutenous snacks dominating the offerings... but it does also have fresh fruit and hummus for sale.  The "healthy lunchable" offering with crackers, meat, and cheese, uses Triscuit style whole grain crackers rather than Ritz white flour crackers.  There are also carrot, celery, and cheese snack boxes with some kind of dip that hopefully doesn't invalidate the healthiness of the rest of the case.

I was Impressed, but More Can Be Done

As an autistic adult wandering through Sesame Street, I was pleased to see some of the changes and offerings available to families with autistic children or other special needs.  Having a quiet room available at all is a massive step up in terms to tolerability of theme parks.  Sesame Street was a small park (within a larger park), too, so while I'd rather have more than one quiet room, I can kind of understand why there's only one.

I was pleased with the family support facility offerings once I found them.  There was no cheap, sensory-painful fluorescent anywhere that I could see, only the more sensory-friendly incandescent bulbs in home-like configurations.  Having a nursing area for new mothers was a nice touch.  Having a microwave so people could heat up their own food, brought from outside the park, was even better.  While I'd rather people be able to simply buy gluten-free, casein- (dairy-) free offerings at the park proper, at least letting them bring and enjoy their own food is a start.  They did have a couple offerings for people on restrictive diets, at least.  Can't say that for the rest of Seaworld.

I did wish the Quiet Room was more like the Silent Room, but noise-proofing is kind of difficult, especially with a kiddie coaster ride literally 30 feet away.  More than one room would have been good, as someone did open the door and then recoiled when they noticed we were already occupying it.  Perhaps an "occupied/free" sign and at least two rooms?  It is, however, a small sub-park, and I can understand why there was only one.  The noise level was a lot more tolerable in the Quiet Room, at least, and the textured wall toy, plush beanbag cushion-things, and wooden play blocks seemed like thoughtful additions to the place.

Overall, especially compared to the rest of Seaworld, I was favorably impressed with Sesame Street.  The signage could be more specific about where the Quiet Room is, and it could really use more than one Quiet Room, but even as it was, the place served my needs fairly well. Hopefully it will continue to serve the families that visit Sesame Street for years to come. 

Reading the Research: Parents, Take Care of Yourself

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article highlights the need for better support systems in general for parents of autistic people.  This is particularly true with younger kids and those who share a household with their parents, but even for older independent adults like myself, it has an effect.  If the parents aren't doing well, the kid is affected.

This is something I tend to tell parents every time I attend the parent support meeting: take care of yourself.  It's not that parents are the cause of the autism or whatever, but if they don't handle the stress and worry and complications well, the child will suffer additional pain and hardship... and so will they.  You can't spend your whole life focused only on your kid(s).  You also have to make time for yourself, and your spouse.  

The idea with this article is to underline the need for the family doctor to provide an opportunity to start talking about this subject.  Pediatricians are usually where you start with things for your kid anyway, and having one remind you that you're a person and not only a parent can make the difference in how you handle things.  It can also start the conversation about respite care, therapists, and other support options for stressed parents of autistic kids.  

This isn't to say that pediatricians should suddenly all be trained in mental health and therapy.  Medical school is long and painful enough as it is.  Having the basics to start the conversation, though, would be a good start.  Ideally it shouldn't be pediatricians that do this sort of thing, but they're about the only predictable link.  If you're a stressed but loving parent, you take your kid to their doctor for various tests, immunizations, well child checkups, etc, every year.  You don't necessarily think to do so much for yourself.  

As an autistic person, I've generally tried to push parents to take better care of themselves.  I think most of us would be happier and even do better if our parents had sufficient support.  More than that, though, the results of our parents not having support are known.  Autistic people are harmed, abused, and even murdered... and the resulting death is often not even considered murder.  Please check that last link if that last statement seems absurd.  

Parents, please, get the support you need to be healthy.  You'll do better for it.  Your loved ones will do better for it.  Everyone you come into contact with will be better for it.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which  has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Book Review: Go Wild

Go Wild: Eat Fat, Run Free, Be Social, and Follow Evolution's Other Rules for Total Health and Wellbeing, by John J. Ratey and Richard Manning, is thankfully a lot less gimmicky than it sounds.  After reading Spark a couple weeks ago, I approached this book with substantial dread, but it reads a lot more clearly than its predecessor.  This one was written for a lay audience, and it's so much more coherent as a result.  In this sub-300-page book, the authors describe a lifestyle, or perhaps a philosophy, for living a happier, healthier life. 

While autism is only mentioned in passing here and there in the chapters, it's been noted that autistic people function as the "canary in the coal mine" in terms of problems... in short, we're the first to suffer when things are systemically wrong, and we tend to suffer more than most people do.  Alternative lifestyles are much more commonplace in the autism community, including the very common dairy-free/gluten-free restriction which has helped so many of us thrive, rather than simply survive.

There are seven points of change or improvement that they address, as well as some failings of modern life and what the human lifestyle used to be like.  For each of his points (obvious things like sleep and food, but also a section on tribe/sociability and your central nervous system), they back up the ideas with references to research as well as personal stories.  I say references because the actual citations are not in evidence.  Not even at the end of the book in the horrifying mishmash of fine text that usually accompanies such things. 

This lack of citations is a little concerning, but I feel that to most readers, it doesn't make that much of a difference whether the citations are there or not.  Few people have time and inclination to hunt down every cited reference to be very sure it's accurate and appropriate to the text.  I'd personally be happier with the references at the end, but there is enough information in each chapter to look up the scientists or research in question.  Assuming a certain level of Google-fu (know-how with a search engine), I guess. 

The ideas in the book flowed fairly logically, given the evidence presented and my own experiences with the various topics.  Mostly, the thoughts put forth were expansions of stuff my doctor has already been telling me, though a bit more explicit or more thoroughly described.  There were a couple surprises, such as the section that covers (but is definitely not limited to) meditation, and parts of the section on food.  There were also some interesting thoughts about cancer and asthma in the chapter on civilization and its results.

If anyone was wondering, no, this book does not tell you to quit your life, go into some extremely rural area, and live off the grid.  The authors aren't so obtuse as to think that's reasonable for their readers.  They do suggest basic changes in the modern lifestyle that, while difficult in some cases, are doable.  And if they work as advertised, definitely worth the effort. 

The authors are also smart enough to realize that lives are highly individualized.  Thus, in the final chapter they give you a framework with which to start your journey towards a happier, healthier you, but don't give you precise numbers, specific exercises, or a list of meals you can or can't have.  They give you basic suggestions, which you can use to try things and find what works for you.

Read This Book If

You're someone looking for better wellness for yourself or your loved ones.  This is a great read for the new year, honestly.  It's particularly relevant for those of us with less stable bodies and minds (like myself), whether that's autism, ADHD, depression, anxiety disorders, or something else entirely.  I'm fairly certain neurotypical and mostly-healthy people will also find food for thought in these pages.  

Reading the Research: EQ

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article doesn't have to mention autism to scream its relevancy to our lives.  It's another example of a systemic change that might benefit autistic (or other neurodiverse) people most, but has benefits for everyone.

Before I continue, a note. Autistic people don't necessarily have low emotional intelligence.  We're often empathic, sometimes painfully so.  The disconnect can be that we don't understand why a person is upset, even if we can tell they're upset.  This can occur because we sometimes react differently to situations than neurotypical people might.

For example, my spouse and I are currently learning that we have vastly different priorities while resolving a conflict. I prefer to immediately figure out where the miscommunication or disagreement occurred, and try to modulate my emotional response and next steps appropriately, ignoring hurt feelings until this is cleared up.  He prefers to address those hurt feelings immediately, regardless of their appropriateness for what actually happened, and worry about the actual issue after the upset has been handled.  Obviously, this isn't an unworkable difference, but it does require some very serious changes to both our operating procedures when conflicts occur.

I'm pretty sure, for all that my good IQ tests, that if they'd given me an EQ test or some other measurement of emotional intelligence in school, I probably would have scored very poorly.  Maybe not "here's your dunce hat, there's the corner, go sit" poorly, since I have a painfully overtuned sense of empathy, but poorly enough to drive my point home.

So, that said: I don't know how you teach emotional intelligence, but I'd really like a class on it, even now.  I think, now that I'm in my 30s and have spent so much time studying people, that I might score okay on a test.  But I'd rather take the class and find out it's review than go through life unsure.  If you know of a such class, especially a free one, please do let me know.

The benefit of this training for autistic people, as for anyone, is reduced operating burden.  The less you have to puzzle over and suffer through conflicts, the easier handling the rest of life is.  Autistic and neurodiverse people simply tend to have higher operating burden than others due to our differences, like sensory sensitivities, motor dysfunctions, learning disabilities, etc.  Reduce the operating burden, and the person can learn more and do better work.

In an age where schools keep slashing non-academic budgets because grades and test scores are all-important, I'm uncertain that implementing something so important will happen on a wider basis.  One thing I'm certain of, though?  Teaching emotional intelligence to everyone would benefit us all.  I can't count the number of apparently neurotypical, yet emotionally-clueless idiots I've run across in my life.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which  has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Worth Your Watch: Lessons from Brain Scans

https://www.youtube.com/watch?v=esPRsT-lmw8

Brains are not made of concrete.  The idea that once you're grown up, that's it and you're done changing and growing, is a fallacy from decades ago.  It's been proven stunningly wrong.  While you may not grow any taller, your brain continues to wire and rewire itself as the years go by.  You grow new neurons.  As you learn new ideas, new pathways and connections in your brain must develop to allow you to handle those ideas and live in an ever-changing world. 

Thus, the idea of these brain scans, and neuroplasticity (the idea that brains change continuously through a person's life), is a valuable one.  The idea that you can literally change someone's brain, to help them heal from an injury or counteract a toxic environment, is invaluable.

That is, in fact, exactly what neurofeedback, especially LENS, the type I benefit from, aims to do.  And it's what my doctor, after years of prodding my brainwaves, has likely achieved.  I can't prove it, of course, since I have no brain scans of myself prior to treatment.  But the results are kind of hard to argue with:  I'm less depressed, less anxious, more able to convey emotions and work with neurotypical people.  I would also say I "read" people better and more intuitively than I used to, right down to being able to point out specific body language markers. 

I did some research on this speaker after I finished this TED talk.  To my great annoyance, there aren't really specifics on how to help autistic people on his website or in the promotional videos.  It's very much a "pay for my services and then I'll tell you how I can help you" scenario.  Of the two "mother advocate" videos, only one went into minor detail about the results of these brain scans.  Blood tests, supplementation, and specific behavioral plans were noted, along with much praise for the expertise of the clinic's experts. 

It's definitely true that autistic people can have specialized dietary requirements or need specific restrictions (like gluten-free casein-free) to thrive.  In fact, what little was described here is rather similar to what my own doctor has guided me through: better nutrition by way of blood tests and supplementation, better guidance for what to do with specific situations. 

I do wonder if "more movement" and "eat less processed crap" also featured in the treatment plan, because those are extremely significant.  At this point in my life, I can actually feel the changes in my system if I've eaten processed food, versus healthier whole foods.  It's both impressive and extremely disappointing, given that a lot of my favorite foods are processed junk. 

In any case, my favorite bit of this video was applicable to any person, autistic or not: you are not stuck the way you are.  You can change the patterns of your life, even if the problem is in your very brain.  I can safely say this is accurate.  There is hope.  You don't even have to travel to San Francisco to find someone to help. I find that wonderfully hopeful and heartening.