Monday, December 9, 2019

Reading the Research: Modulating Brainwaves and Attention

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 explores a use for neurofeedback.  There's been some rumblings of this sort of thing here and there in my research feeds: using neurofeedback and other brain-focused non-chemical interventions to augment function, rather than treat problems.  In this particular case, the study focused on attention, which I expect could be used to help people with ADHD and anxiety (both groups tend to include significant autistic populations). 

As you may know, I've been doing neurofeedback therapy for about four years at this point.  It's a specific form of neurofeedback, called LENS (Low Energy Neurofeedback System), and it's passive rather than active.  That means it's done to you, and you don't have to do anything in particular or focus on anything or try to accomplish anything on a screen.  It's improved the connections in my brain, and made it so I project facial expressions better.  In turn, this allows me to smile at cameras (couldn't do that before) and communicate better with neurotypical people.  

This study was done with an active neurofeedback, training the participants to modulate their own brain waves to some extent.  Specifically, it focused on suppressing alpha waves, which are associated with attention.  (Here's an explanation of the types of brainwaves we've identified.)  The result of this training exercise was improved attention and focus.  I would be curious to see if these effects translated outside the laboratory, and I'd bet my whole house that people in college and grad school would be extremely interested in benefiting from that effect.  Especially around finals time.  

(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.)

Friday, December 6, 2019

Worth Your Read: Dancing to Confidence

I really enjoyed this article.  Autistic people are not known for our grace and coordination.  Movement is for everyone, though, and apparently these ballet teachers have the patience, kindness, and background in special ed to make it work. 

I'm reminded of my stint in dance skating.  These were the four wheeled roller skates, at an old rink that had seen better days but was still kept up with care and love.  I attended lessons with some friends there for a time.  I started out fairly clumsy and terrible, but after months of trying (and bruises, and frustration), I was able to learn to skate on one foot and do simple jumps and tricks.  This was not wholly because of my perseverance.  It's because Breck, the teacher, was a patient and encouraging man.

I don't have the physique to be a competitive dance skater, and I never progressed beyond a certain level.  But even as poorly coordinated as I started out, I learned.  This was well into my teens, and past the point when I would be able to really change how I walked and moved overall.  Imagine if I'd started younger. 

Balance was always a tough problem for me.  I've had to look carefully where to put my feet when I walk, since I was quite young.  Even on sidewalks.  I learned how to ride a bike, but it took me longer than most people, and there was a lot more fear and terror because of that whole "falling over" problem.  Like riding a bike, skating is easier if you have some momentum to help stabilize you. 

Dance skating mostly follows patterns and rules.  I suppose ballet and classical dancing does as well, to some extent.  I've read in various places that dance is absolutely fantastic for your health and wellbeing.  In part because it has a spontaneous component, it's also good for your brain. 

In addition, people feel better about themselves when they succeed at something they're invested in, in their lives.  It increases their confidence and their belief in their own agency and ability to do things for themselves.  This is particularly important for autistic people, whose confidence is regularly undermined by social difficulties

...I suppose you're never too old to try something new.  Perhaps I should try some form of dance and combine exercise with leisure.  

Wednesday, December 4, 2019

Legwork and Life: the Familyening

This is Legwork and Life, where I track the legwork and opportunities in my career as an autistic advocate, and also describe parts of my adult autistic life, including my perspectives on everyday problems and situations.

This L&L is to note that my life has significantly changed as of last Saturday.  We went down for Thanksgiving to celebrate with my spouse's family.  That was significantly exhausting and I'm still recovering this week.  But we also came back with Chris' younger brother, Ryan.  

The area we live in has a lot more by way of job opportunities and educational opportunities than where he was living, so he'll be living in our spare bedroom for up to two years while he gets his feet under him.  Like me, he's neurodiverse, and may need some extra support for a time.  Unlike me, he's been able to keep a part time or full time job for longer than a year in recent memory, so that bodes well for his success.

It's a major change, as I'm not great at sharing space in the first place.  My spouse should probably get a medal for putting up with me.  I think it'll be okay overall, as he has his own space and we pointedly tried to hammer out basic rules, which he read ahead of time and was okay with.  Regardless, though, it'll be an interesting (and challenging) experience.  

I tend to spend a lot of time home, which also meant being alone prior to this.  Depending on how quickly he gets a job, this may or may not be disrupted too much in the long run.  For now, my ears keep picking up on noises I wasn't expecting, because he has friends he chats with via the Internet and he also moves around the house sometimes.  I'll probably adjust to that in a week or so.  In the meantime, at least for sleeping, I'm looking into using MyNoise more, due to its excellent range of white noise generators of all kinds.  

I find the rain options particularly soothing, but really, any of them help tone down how much I can hear, which helps.  It's a great resource.

Mostly, I'm just hoping this goes well, and that I'm not too big of a grump or a jerk in the process.  

Monday, December 2, 2019

Reading the Research: Parental Involvement in Education

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.

I'm a little wiped out from the Thanksgiving trip, and there'll probably be a Legwork and Life this week due to Major Life Event, so bear with this short RtR.  

Today's article highlights the importance of parents in school achievement.  

This study was done in a school system that's a bit different from the US system.  In the US, you automatically go to the public elementary school, middle school/junior high, and high school for the area you live in.  Your parents can opt to pay for a private school at any of those stages, but your taxes still go to funding the public schools even if you do that.  Some schools in the US are more prestigious than others, or offer education with a religious bent, so some parents prefer this over the public option.

In Croatia, where this study was done, elementary school covers up to high school age, and there are two types of high school (secondary school): the kind that prepares you to go on to college/university, and the kind that prepares you to go right to work after finishing.  Germany has a similar system, but it's four-tiered in terms of secondary school options, with only the highest letting you advance to college.  

All this to say: it's a different system, but there's a measurable impact in school success and achievement, and it's parents.  Parental support, not fanciness of school, class size, or even GPA, was the predictor of the child's desire to advance to higher levels of education.  I thought that was kind of an interesting takeaway, in a world where people puff and preen about this college and that private high school. 

Going to college isn't for everyone, especially now that (in the US) it costs you a mortgage-level commitment you'll pay back for the rest of your life.  But cultivating a love of learning is good for everyone, regardless of their eventual academic achievement.  We learn something new every day, and the world changes around us a little bit every day.  Keeping up with that is so much harder if you don't want to accept or engage with 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.)

Friday, November 29, 2019

WYR: Using Augmentative and Alternative Communication

One of the things I've always wanted to see was an overview of Augmentative and Alternative Communication (AAC).  Those of us that don't speak or don't speak well enough to count as "normal" may rely on systems like the app Speak For Yourself, card systems, sign language, etc.  This article is not that, but it's a good primer in learning, using, and teaching those technologies.

I feel these technologies, and articles like this one, are extremely important.  Autistic people aren't the only ones who can find themselves unable to communicate verbally.  Various developmental disabilities, speech impediments, and other conditions can make these technologies appropriate and useful.

Personally, I developed speech at about the normal time, and have been able to take my verbal skills mostly for granted as I grew up.  But I found out in college that I have limits to how many words I can process.  After a certain amount of talking, my brain starts to resent having to process speech.  I have to go someplace quiet, stop using speech myself, and rest.  This led to at least one kind of hurtful interaction with a college friend, where I had to bundle her rather unceremoniously out of my apartment so I could recover.  I'm not sure she understood, and I had no idea how to explain it to her.

I have yet to learn sign language or some other form of AAC, but if anyone has recommendations, I'm open to learning.  Ideally I'd like to try one that works on an Android tablet.  It's hard to advocate for nonspeaking people when you have such a different experience than they do, and I'd like to do better.

Regardless, I'm excited to see more focus on AAC and getting nonspeaking or low verbal people the ability to communicate their thoughts.  It's a better world with all of us in it, able to share our thoughts and viewpoints.  

Monday, November 25, 2019

Reading the Research: Saving the Suicidal

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 is a step forward to save peoples' lives.  Autistic people often suffer from depression, or suffer horrible barrages of side effects that make traditional anti-depressants painful and frustrating, to say the least.  Ketamine has been shown to quickly treat depression, especially types otherwise unaffected by anti-depressants.  This has been particularly notable in emergency rooms, where people sometimes arrive because they would otherwise immediately seek their own deaths.  Having a fast-acting treatment available is exceedingly helpful, but most ERs and other treatment centers have been slow to use this treatment.  

This hesitance is because there hasn't been much research into the treatment.  Very few studies have looked into the effects of small doses on depression in the really rigorous manner required to make sound scientific decisions.  A study like this, looking into what would essentially be the ER's go-to treatment for a suicidal patient, is thus invaluable.  

I was particularly cheered to see the complete lack of addiction noted.  Ketamine has been compared to addictive drugs in the past by less informed groups and individuals, so it's good to see that this study noted no such effects.  

Perhaps more importantly, though, the FDA has apparently approved a nasal spray variant for the treatment of depression.  For anyone that doesn't already know: "treatment-resistant depression" is not in fact treatment-resistant.  It's merely not fixable with the standard barrage of anti-depressant pharmaceuticals.  Things like proper nutrition, exercise, time outdoors, and mindfulness can be combined to "treat" depression, but the typical treatment plan in US Healthcare is "here's some pills."  Anything that doesn't respond to pills is declared "treatment-resistant."  I have Opinions about this, suffice it to say.  

In any case, I'm going to continue to keep an eye on ketamine and its progress.  Too many autistic lives are lost to suicide.  While the systems that drive us to suicide must also change, we need our adults to survive and make the case for those systems to change.  We can't rely on parents and professionals to do it for us.  And having a fast-acting treatment for depression helps everyone, not just autistic people.  

(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.)

Friday, November 22, 2019

Autism Panel for Med Students: a summary

About a month ago, I had the privilege of speaking to a group of medical students, most of them on track to become the doctors of tomorrow.  I was asked to make a speech to introduce the subject and lead into the panel discussion of autism and medicine.  Below is the speech, a link to the handout, and my answers to the questions the panel members were given.  I'll also include a summary of what other panel members said.


Good evening, and thank you for coming.

Before we begin, a note.  We, the autistic people before you, represent a small portion of the autism spectrum.  We're the ones who are verbal enough and organized enough to sit before you in a strange place, prepared to talk about ourselves in coherent detail.  Not everyone you run into in your careers will be able to do this.

In fact, depending on how much stress we're under, WE OURSELVES may not always be able to do this.  So the first thing I want you to know is that there are many forms of communication, and what we'll do here is only the most mainstream form: verbal speech, supplemented by body language.

This form of communication is what most of society runs on, and our proficiency in it is why we were chosen to be here.  There are other kinds of valid communication, including behavior, sign language, texting, the Picture Exchange System, and text-to-speech apps.  I would strongly encourage you to acquire a passing familiarity with these forms of communication, at least enough to recognize them so you know what to Google.  (smile)  Quite frankly, I expect these forms of communication to become more mainstream as our understanding of autism and nonspeaking humans advances.

So, what is autism?  I've read a lot of books on the subject, and most of them start out with giving the DSM's definition.  That's the American Psychological Association's diagnostic manual.  And y'know, I could do that, but quite frankly, when I got my diagnosis about a decade ago, those criteria were useless.  So I'm going to skip them.  I have a bachelor's degree in psychology, and I'm going to tell you that diagnostic criteria for brain differences and mental disorders are far more theory than practicality.

You can rely on the diagnostic criteria for physical diseases like hives or measles because they're well understood.  You can't, or at least shouldn't rely on the criteria for neurological differences and disorders, because quite frankly the APA is grasping at straws.  They're trying their best, but apparently the human mind and the human brain are one of the most complicated subjects we as a species have ever tried to study.

Our current best understanding of autism relies on brain scans.  When put under an fMRI, there are functional differences between an autistic brain and a normally developing one.  Some parts of an autistic brain may be over- or under-developed by comparison to the "typical human brain."  The connections between those parts may be stronger or weaker than average.  You can get a wide variety of traits as a result of these differences in our mental machinery.  The most common ones are socially-oriented: things like difficulty reading body language, difficulty reading facial expressions, and difficulty reading tones of voice.

The difficulty goes both ways: sometimes you find flat or singsong tones of voice in autistic people, or a very flat facial expression that doesn't convey much emotion, or very rigid and uncommunicative posture.  You can also get things like gastro-intestinal disorders, diet sensitivities, sleep disorders, anxiety disorders, sensory sensitivities, executive function difficulties, and depression.

There are tradeoffs, though.  An autistic person who loves their hobby is one of the most devoted and knowledgeable people you could hope to talk to about that hobby.  As a spouse or a friend, an autistic person tends to be extremely loyal.  We tend to have strong senses of justice.  We also tend towards literal-mindedness, directness and honesty, rather than playing mind games and carefully selecting socially appropriate white lies.  Physical appearances, things like what brands you wear, how perfect your makeup is, and how coordinated your clothes are... these things mean less to us than WHO you are, and what things you like.

Finally, autistic people bring fundamentally different points of view to any discussion.  We are, in essence, different.  That can provoke misunderstandings and slow things down, but it can also be helpful.

For example, when my spouse and I finally gathered enough money to be able to house-hunt, we were told to pick some important things we wanted in a house, tell them to the realtor, and then look around until we found a house we loved.  My spouse may have been happy to do that, but I preferred to consider, in exhaustive detail, every aspect of the house I wanted to live in.

Things like 3 prong electrical outlets, the presence of a bathtub, number of bathrooms, number of shared walls, the tax rate, how the tap water tasted, the age of the roof, the amount of nature around the house, and the average time to Meijer, my parents' retirement home, and his workplace.  All of these things were excruciatingly given priorities and point values and put into a spreadsheet, which we filled out for every home we looked at.  Each home received a score at the end, which we used to help determine whether we wanted to put an offer on the home or not.

This was far more work and annoyance than most people would bother with, but I considered it worth the time so that we could find a home we would be happy in for decades.  Was all this work atypical?  Definitely.  Was it worthwhile?  Definitely, at least in my opinion.  My autism, weirdness and all, helped me find a place I genuinely enjoy living in, and my family is better off because of it.

Which brings me to my last point.  In recent years, autistic people have developed communities and schools of thought about ourselves, our difficulties, and our successes.  One of the major philosophies to come out of this coordination is neurodiversity.

Essentially, neurodiversity is the idea that the human race is better with neurological diversity.  That autism is not a disease to be cured, but a difference that should be supported and respected.  That isn't to say that autistic people don't need help, or that being autistic doesn't come with hardships.  It's merely to say that without us, you are all made less.  The human race needs people with different points of view, because it takes new and weird ideas to come up with the new and weird inventions that keep humanity moving forward.

Temple Grandin redesigned cattle facilities and slaughterhouses to be more efficient and humane.  John Elder Robison created astonishing new sounds and flaming guitars for the band KISS.  Bill Gates and Steve Jobs transformed the world as we know it with personal computers and iPhones.

Each autistic person is different.  Personally, I can't design a slaughterhouse or an iPhone, but I can stand here before you, the medical professionals of tomorrow, and attempt to bridge our worlds.  I firmly believe the world is better with all of us: neurotypical and neurodiverse together.

Thank you.


Link to the handout


Panel Questions

1.  What are you doing now or have you done recently that is a success for you - either because if or in spite of your ASD?

I went to Reston, VA, near the capitol in DC to help direct the Autism Research Program's use of US tax dollars.  They contract consumers (ie: people affected by the issue at hand) as well as scientific reviewers of various types.  Each application is reviewed through a set of processes, and eventually a final score is assigned.

From those scores, the most scientifically rigorous and most useful-to-the-community studies are chosen to be funded.  It was an exhausting opportunity, but a worthwhile one.

Most other panel members spoke about their jobs, or personal successes.

2.  Tell us about your support system.  If you want to, you can include your age of diagnosis.

My support system is complicated.

I try to eat dairy-free, because I've noted dairy products tend to send my mood into a downward spiral.  I don't know why this is, but it's a clear enough effect that I noticed.  I also have my supplements, which at this point is up to 8 pills in the morning, and 4 at night.  These include multivitamins as well as specific minerals and vitamins I tend to be deficient in.

In addition to these, I try to exercise 2-3 days a week.  I see a therapist once every two weeks, where she administers a form of neurofeedback called LENS as well as more traditional talk therapy and managing my supplements.

Other panel members spoke extensively about their families, mostly, some also about their friends.  They mentioned relying on these people to "get them," and advocate for them when they can't do so for themselves.

3.  What would you like people to know about autism?  What do you think are some common misconceptions?

Mostly, that we grow up.  The general perception of autism is that of a white male child of perhaps 6 years of age, obnoxiously trapped behind a warped pane of glass.  In fact, the average age of an autistic person is 19, and many of us are people of color, born female, and gender minorities.

Those of us that can blend into the general population often choose to do so, because of the stigma and infantilization of autistic people.  High support needs are equated with being a child or being stupid, and they shouldn't be.  But that can drive those of us who are verbal to feel isolated, and unwilling to identify publicly as autistic.

Other common misperceptions included the specific symptoms and presentation of autism.  Women in particular tend to not have the same kinds of symptoms as men, so sometimes an autistic person, or even a small child, is dismissed out of hand for not being like the "classical autism" which was described mainly around male children.

4. How do you respond in situations if you're scared or worried?  How might you respond in an ER or in a traffic accident?

This is rare for me after three decades of life, but if I have no script or sense for what I should be doing, I tend to freeze.  When sufficiently stressed or when my brain has become too "worded out", I can become nonverbal or very low-verbal.

Other panel members described being fully verbal but completely incapable of handling any decision-making.  One even said she would need to be talked down, preferably with subjects like her favorite TV show, before she'd be able to engage with an emergency situation.

Another spoke of having a completely abnormal response to a traffic accident, where the panic and stress reaction that neurotypical humans experience quite literally didn't kick in.  While the driver of her car was still locked into gripping the steering wheel, she got out of the car, inspected the damage, and found it was a very minor accident.

5.  If you are a person who experiences sensory overload, would you prefer a quiet room in healthcare?  How is the noise level/stimulation in current healthcare areas now?

I am definitely sound-sensitive.  I'm not sure there is anything that counts as a quiet room in healthcare.  I've been in hospitals, they make me fervently hope I never have to go back.  There's always people moving and talking in the hallways, the sounds of machines and medical equipment inside the rooms, the fan or climate control going...

These were nice hospitals, too.  Pleasant staff, lots of windows, art on the walls, all of that.  I can't imagine trying to heal and recover in such a place.  I'm no longer surprised when I go to visit someone in the hospital and they look terrible.  Nobody looks good in a hospital.  They're just not good places to be, to me.

There was no disagreement on this subject.  Not one of the four of us found hospitals a relaxing, pleasant environment.

6.  What can a neurotypical physician do to help communicate with a person with autism?

I mentioned this above, but it merits the repetition: learn about and be open to "nonstandard" forms of communication.  The Picture Exchange Communication System is one of these.  Sign language, text-to-speech apps, and texting itself are others, and there are more.

Other panel members noted that it's best to presume competence (ie: treat the autistic person like they're a person, and assume they know what they're talking about even if they can't express it perfectly).  They also appreciated a willingness to listen, and patience when a person has difficulty giving a succinct answer.

7.  What has a physician done for you that was helpful?  Unhelpful?

I've found self-directed care to be the most useful.  Giving me the information I need to make my own decisions, rather than simply writing a prescription and making the judgement call themselves, was empowering.  Believing me when I describe symptoms that don't fit neatly into a medical textbook also features high on the list.  I've had primary care practitioners that either didn't do this or didn't care because they had such a high caseload or just... didn't care overall.