Worth Your Watch: Autism and the Church

Posted on by Realistic Autistic
https://www.youtube.com/watch?v=VKkzC4KDz3E

This is probably the single best explanation of autism I\’ve ever found.  It contains a very brief explanation of autism\’s history, explains the problematic parts of our past understanding of autism, and even included the latest development with Hans Asperger.

He also includes a better explanation of the autism spectrum (ie: not a linear spectrum), a mention and unpacking of the autism adage, a much-needed reminder that meltdowns are not tantrums, commentary on the gender distribution of autism, and some interesting points about sensory differences.

He\’s remarkably careful about his language choice.  Paired with the early introduction, the fact that he \”gets it,\” and mention that he has personal connections and interest in autism, I suspect this speaker has some significant connections with the autistic community.  Also some significant debates or discussions, possibly heated ones.  I also laughed at around 27 minutes, where he starts to apologize for taking such a long time to describe autism, then stops and corrects himself to note that he\’s not sorry.  That\’s a very autistic thing to do and it made me very happy to hear someone so respected and valued be so thoughtful, honest, and direct about his thought process.

The speaker explains autism in three sets of characteristics: social and communicative differences (mostly what the DSM focuses on), sensory differences (like touch or sounds hurting), and what he calls systematizing differences.

I found this last category/trait set fascinating.  I\’ve never heard autism described in this fashion, but the way he explains it makes perfect sense to me and also unifies my ability to predict people and see how mental/emotional cycles work with people that adore train schedules and putting objects in order.  It\’s so much of a better explanation than Temple Grandin\’s \”some people think in pictures\” theory.  (She\’s since revised it into several different types of thinkers, in fairness.)

Not included in his definition of autism was anxiety, depression, suicidal tendencies, etc.  He does make mention of these things, and notes their incidence rate is higher in the autistic population, which is quite accurate.  But he doesn\’t include it as a core feature.  This is correct, because most often our depression and anxiety is externally caused.  We don\’t fit in, people treat us poorly because we don\’t meet their expectations, and suffering results.  Too much of that, and you get anxiety, depressive disorders, and suicidal thoughts.

I also appreciated his explanation of person-first language and his note that most autistic people prefer to be called \”autistic people\” rather than \”people with autism.\”  He didn\’t quite nail the full reason why we tend to prefer that, which is that with all the fearmongering and searching for a \”cure\” for autism, some of us really have to emphasize that without the autism, we wouldn\’t be who we are.  You can\’t just peel the autism off, it is intrinsic to who we are.

Please note, the autism adage applies here. Some autistic people do prefer the person-first language.  It\’s always best to ask a person\’s preferences.  I tend to use both, but favor \”autistic person\” over \”person with autism.\”  If you somehow pulled the autism out of me, I would not be the same person.  Actually, I suspect I would be a significantly more boring, less thoughtful, and less valuable person.  Like pulling all the ground meat out of the meatloaf.  What you have left is technically edible, but the substance is gone.

I was somewhat surprised Mr. Macaskill didn\’t address specific parts of the Bible that directly deal with disabilities.  There\’s Jesus healing the sick, the blind, the lame, etc.  Disability in the past (and somewhat, the present) is considered a failing on the affected person\’s part, even a sign of insufficient faith or sin.  Perhaps he didn\’t feel the issue was widespread enough to address?  He did address the value and worth of autistic people, our support people, and other disabled people, which addresses the issue somewhat, I suppose.

Lastly, I really appreciated the speaker\’s take on reading and interpreting the Bible.  I\’m more used to the fracking approach he describes, but what he describes as the better alternative is far superior.  I wish that every Christian would learn and internalize this method of interpreting the Bible.

Overall, I loved this talk.  It gets so much right, and I wish it was searchable on YouTube properly.  But apparently Wheaton College didn\’t want it to be, so you can only find it if you\’re linked to it, the way a friend did for me, and I have now done for you.  Enjoy!

(Further resources from Wheaton College, including ones for schools, churches, and families, are located here)

Worth Your Read: Dancing to Confidence

Posted on by Realistic Autistic
https://www.nytimes.com/2019/11/19/well/family/autism-children-dance.html

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.  

WYR: Using Augmentative and Alternative Communication

Posted on by Realistic Autistic
http://www.thinkingautismguide.com/2019/10/ok-so-we-have-aac-now-what.html

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.  

Autism Panel for Med Students: a summary

Posted on by Realistic Autistic
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.  

Fortune Cookie Rant: “Uniqueness”

Posted on by Realistic Autistic
Fortune from a fortune cookie: Your uniqueness is more than an outward experience.
Fortune cookie: “Your uniqueness is more than an outward experience.”
I went to a Chinese buffet this week. This came out of my fortune cookie. I think the creator of this “fortune” (note: not a fortune, not even advice) meant to be complimentary. Like, “I, this little scrap of paper with some semblance of cultural authority, written by some American wherever this cookie was produced, believe you (a stranger I’ve never met) to be truly unique.” In fact, when I showed it to the friend I’d gone to the buffet with, that’s exactly how they took it.

Me? I looked at the little scrap of paper, scowled, and said, “Well DUH. Ugh.”

So here’s the thing about being autistic and being able to blend in somewhat. Short of when you’re alone, you pretty much never get to forget about it. You are always measuring how you’re doing, how you’re interacting with others, how others are interacting with you, what the environment is like, etc. This is not, frankly, an enviable position, and I don’t enjoy being in it. I recognize it as a necessary evil in order to keep the broad neurotypical majority comfortable, so they’ll treat me like I’m a human rather than a child or something subhuman.

Think I’m being harsh? Here, read this. Or this. Or even this. Autistic lives are lost all the time to situations like this. What doesn’t usually make the news is the other costs of not fitting in. Things like not being able to keep a job, and being unable to find friends. The depression and anxiety that come with those situations piles complications on top of an already complicated life.

Humans are pulled two ways, in terms of this question. We’re a social species. We like to fit in, to be understood, to be part of a community (sameness). But we also like to stand apart in good ways, be valuable for ourselves, be unique (difference). Two sides of a line spectrum. Most people fall somewhere in the middle. I fall somewhere towards the “uniqueness” side and farther away from the “fits in” side.

I got my diagnosis about a decade ago. After I finished being confused about how the DSM criteria didn’t really describe me, I experienced a deep surge of despair and bitterness. I’d spent from about age 10 to about age 20 trying to learn how to fit in, without compromising myself too much. Receiving my diagnosis was the death knell for my hopes of ever finding some place to fit in. I’d tried very hard, but the answer was that it was never going to be enough.

Am I unique? Absolutely. Everyone is to some extent. No two humans are the same. Am I more distinctively unique than most? Probably. I have a strong personality and will, definite viewpoints and opinions, interests, etc. I don’t need a fortune cookie to tell me I’m a unique person. Mostly, it just underlines to me how different I’m always going to be.

My best hope is to try to build a world where it’s not so isolating to be so unique.

WYR: Gift or Disability?

Posted on by Realistic Autistic
https://www.psychologytoday.com/us/blog/my-life-aspergers/201910/is-autism-becoming-neurodiversity

Healthy.  Independent.  Normal.  These three adjectives summarize the US ideal for an adult human.  Look very carefully at these three adjectives. 

We strive very hard for these, but if we ever truly qualified for them, it was a very fleeting qualification, perhaps in our early 20s.  In terms of health, the instant you develop any kind of chronic health problem, like migraines, sleep disorders of any kind, mental illness, you\’ve lost that ideal and will likely never have it back again.  The vast majority of US citizens do not count as \”healthy.\”  Our bodies break down over time, or come with genetic quirks that can cause problems.  Perfect health is a fleeting illusion.

Independence is a funny one.  Unless you want to live alone, off the grid, in some cabin you built yourself without tools in the middle of nowhere, growing and foraging your own food and drinking your water out of a stream or lake, you are not independent.  We like to take things like roads, saws, screwdrivers, education, and the Internet for granted, but each of them involves other people.  Usually a lot of other people!  You rely on those other people every time you use these things. 

I feel very confident in saying literally no one who reads this post, even if it was printed out on paper and brought to far corners of the US, is independent.  Independence is an illusion. 

Normalcy, well…  I have yet to run into anyone who can define normalcy in a way that doesn\’t sound stupid at best and horrifyingly straitjacketing at worst.  We can safely say I have a bias here: after all, I\’ve been autistic since before I was born, and so I\’ve never been \”normal.\”  I just don\’t see the point. 

Yes, it\’s good to have places where you feel you belong, but usually the people deciding who\’s included aren\’t going to include the full range of human diversity, even diversity like \”I like this other sport\” or \”I really liked this unpopular song because even though it\’s bad, it spoke to me personally.\” 

As such, autistic people are almost invariably left out… but everyone, even neurotypical people, have the experience of being excluded at some point in their lives.  From what I\’ve heard and read, it\’s about as fun as being excluded for being autistic. It\’s just a less systemic, less regular occurrence than what often happens to us.  You don\’t ever get to always be normal.  And honestly, given the vast range of human diversity, I kinda think normalcy is also an illusion.

And there you go.  What we idealize, we can never be for long, if ever.  I have a lot of problems with the medical autism mode of thought, but I do at least recognize that it addresses very real disabilities and support needs.  Neurodiversity is the pushback to the stigma that medical autism has forced on us.  It is, like the social model of disability before it, a much healthier, though incomplete, philosophy. 

If we welcome everyone, then everyone, neurotypical or not, will be welcome.  If we accommodate and support health differences, everyone, perfect health or not, will be welcome.  If we recognize that everyone relies on thousands, even millions, of other people every day, we won\’t find higher support needs so offputting, and may find ourselves learning and growing as people.  

WYR: Planning an Inclusive Event

Posted on by Realistic Autistic
http://www.thinkingautismguide.com/2019/10/how-to-plan-accessible-events.html

It\’s weird to me that this list of suggestions is 28 entries long and still counts as incomplete.  It\’s because there are so many forms of disability, and trying to address them all individually is extremely complicated.  And the bigger the event, the more of these suggestions apply, because the more kinds of people you need to serve. 

However, knowing your audience is important.  If you\’re hosting an event specifically for members of the Deaf community, you might not need to check whether the location has a wheelchair ramp or remove any fragrance dispensers, unless you know some of those people also have physical access challenges or sensory sensitivities. 

In general, I\’d say it\’s best practice to be safe rather than sorry, and to do as many of these as you can manage.  But I do understand that in practicality, it\’s complicated and can be exhausting to merely run the event, never mind going down a list of 28 things to make sure you have as many accessibility boxes checked as possible. 

I Don\’t Do Excitement: Handling Emotions While Autistic

Posted on by Realistic Autistic
I had kind of an interesting and educational experience last Tuesday.  Briefly, I was invited to help lead and speak on a panel to educate med students about autism.  It was myself and three other autistic people.  This was, thank God, the last major thing this month besides a dual party for myself and a friend.

I wrote the bones of my speech the day before, the speech itself the day of, and then I spent another hour or so putting together a handout with further reading and the main points of the speech.  Because I\’ve been a student and I swear to you, lectures are the least useful way to convey information.

After all this was done, I had about two hours before I needed to leave.  This left me sitting in anticipation.  I assessed the emotion absently, labeled it anxiety, and proceeded to put on depression music to shift my emotional state.  Basically it\’s the kind of sad/angry music you can kind of drown in, which helps you feel understood and also feel calmer, though not better.  I\’ve done this before, and it works quite well.

But I thought about it as I listened to the music, and realized that I was probably going about things wrong.  The anxiety feeling was uncomfortable in its strength, but the situation I was heading to wasn\’t really a bad situation.  It was simply new and important.  If I kept the depression music on, I would be less anxious, but I\’d also approach the situation with resignation and sadness.  That wasn\’t a good attitude to bring to these medical students. 

I also recalled the podcast I\’d listened to a few months back, which mentioned that emotions can be boiled down to two spectrums: wound up-calm, and positive-negative.  Excitement, you see, is merely positive anxiety.  Physiologically, they\’re exactly the same.  The difference is in how you mentally view the situation.

This realization made me realize I honestly don\’t do excitement.  I do anxiety.  All excitement in my life has likely been mislabeled anxiety or worry because it\’s what I\’m used to.  Granted, the excitement-to-anxiety ratio is probably heavily skewed toward the latter, but I don\’t honestly know. 

The end result was that I was so used to feeling bad and reading wound up as anxiety, that it didn\’t immediately occur to me that I should maybe just be happy for myself that I had this opportunity. 

After I thought about this for a while, I put on some more neutral, semi-wound-up music and sniffed my calming perfume scent to take the edge off my wound-up-ness.  I then began playing a favorite puzzle game on my phone until I could be distracted with other things and needed to go. 

I did manage the speech, though I was still pretty…well, it felt like anxiety again frankly, because there was a whole classroom of college-age students looking back at me.  I was a bit busy just trying to read the speech and not rush to question whether it was excitement or anxiety. 

That\’s something I\’ll have to look for, going forward.  I\’m not sure if I\’ll continue to have to do it via deductive work (i.e.: this situation is positive, I should be excited not anxious), or if I\’ll eventually develop a sense for the difference. 

Either way, this is progress.  

Book Review: The Partner\’s Guide to Asperger\’s Syndrome

Posted on by Realistic Autistic
The Partner\’s Guide to Asperger\’s Syndrome, by Susan Moreno, Marci Wheeler, and Kealah Parkinson, is pretty much what it says: a book that tackles the challenges that may be faced by couples where one partner is autistic.  The scope of the book is somewhat limited in that it focuses intently on male autistic partners with female often highly socially-proficient neurotypical partners.  They acknowledge their advice here is limited to that situation, and autistic-autistic partnerships or female-autistic partners with male NT partners may have different situations to handle.

That said, some of the advice given here was broadly applicable regardless of the partnership composition.  There are certain tendencies addressed in this book that often apply to autistic people.  In many cases, these were exaggerated version of traits I sometimes display myself but could clearly see why they were painful to the neurotypical spouse or partner.  This similarity made the book rather painful for me personally to read, but I expect it would be rather enlightening for people who don\’t have an innate understanding of these behaviors.

Included sections are things like differences in communication, social skills, executive function, sensory processing issues, how to cope with stress, parenting, and common situations a NT spouse may find themselves in.  All included sections seemed highly relevant to the book\’s overall message.  The authors even attempted to give the book some balance by including a \”positives and negatives\” chapter about autistic traits.

I appreciated this effort to present the strengths an autistic partner can bring to a relationship, but I feel that overall the book focused intently on our deficiencies.  I felt rather sad and like I\’m a broken human as I read the book, matching some of my tendencies to the stories of dysfunction in various real and fictitious relationships described in the book.

I feel like this wasn\’t really the authors\’ intent, and it\’s possible I\’m being oversensitive on the subject.  After all, this is a book to help NT partners handle communication breakdowns and manage living with someone very different than oneself… it\’s not a book celebrating fully functional relationships that have few problems.

My sadness aside, the book had valuable (if rather brief) information on all the subjects it addressed.  I would suggest this as a starting point for a partner, and then to follow up on specific questions and subjects.  Like, if the autistic partner has severe rigidity, there might be specialized resources for that.  Or they might have touch sensitivity but not visual or sound sensitivity, so you might look into a book or expert who knows a lot about that subject.

The last thing that struck me about this book is that it strongly recommends finding three therapists: one for the autistic partner, one for the NT partner, and a relationship counselor for the relationship or marriage.  The authors also caution the NT partner to find a therapist that understands autism, because otherwise their concerns may be waved away as being a worry-wort or being overbearing.  I have no personal experience on the matter, but I can definitely see something like this happening, and I wouldn\’t wish it on anyone.

Read This Book If

You\’re the spouse, partner, child (if interested), or friend of an autistic individual.  Especially if the autistic person is male.  Even if they\’re not, the information here is valuable and presented with far less negativity and personal trauma than books I\’ve read in the past.  I\’ll likely recommend my spouse read this book and see if the added perspective helps him handle my less normal moments.  

Worth Your Read: Forced Friendships

Posted on by Realistic Autistic
http://www.thinkingautismguide.com/2019/08/forcing-friendships-doesnt-equal.html

This week\’s article is valuable for several reasons.  First, it contains a valuable perspective from a black mother.  Autism is often a \”white male\” condition, in that we often assume people who have it are those two things.  The thing is, that is increasingly not the case.  I\’m female, and this mother and her son are black.  These experiences are just as valid as that of the more visible, stereotypical autistic people.  It\’s valuable to listen to these perspectives because it teaches us more about autism as well as broadening our understanding of what it means to be human.

The second reason is that this article talks about consent in terms that people may not consider them.  Consent, broadly, is the idea that people should be allowed to give or deny permission for things relating to themselves.  It was first brought up in terms of sex and sexual activities (ie: teach this and use it to identify and avoid rape).  In very very brief, if freely given and enthusiastic consent for the sexual activity is not obtained from all parties, those activities are rape against the non-consenting people.  Coercing, begging, or guilting a person into giving consent to an activity does not count as receiving consent.

The idea has since broadened to less intimate activities, including hugs and other forms of touch.  There are people, myself included, who can react very poorly to sudden touches.  This isn\’t just autistic people, anyone with touch sensitivities, or people who have suffered physical abuse, can be affected like this.  Even touches that are seemingly harmless, like hugs or a hand on the arm or shoulder, can startle, upset, and even hurt the person.  Because of that, it\’s wise not to assume a hug will be welcome, and instead ask whether you can hug the person.  This is respectful of the person, their boundaries, and their bodily autonomy.

By the way, this idea of bodily autonomy extends to family interactions as well.  Uncles, aunts, cousins, grandparents, even direct parents, may feel the need to express affection via hugs or other familiar touches.  They may consider these touches their right, being family.  I have to tell you, a touch doesn\’t stop hurting just because it\’s someone you love doing it.  These well-meaning gestures of affection can come off as overwhelming, agonizing, selfish demands, and the autistic person may come to dread them.  Respect your child\’s right to say no to these gestures, and help your relatives understand and respect this right as well.

This mother takes consent a step further.  Although autistic people can have trouble with having and keeping friends, she considers it her son\’s choice whether to spend time with people or not.  If her son wants to go to an event, she arranges for him to be there, and if he doesn\’t, she doesn\’t force him to go.

This seems like such a simple idea, and it\’s one that most adults take for granted.  But as she points out, the parental hope of \”normalizing\” the autistic child can overwhelm any caution or respect for the child\’s boundaries.  While it\’s true that  practice with social skills is helpful for learning and growing those skills, forcing the practice can absolutely backfire.

Personally, I think if my parents pointedly left with me \”normal children\” expecting me to \”become more normal,\” I would internalize two things:

1. My parents do not love me.  They may say they do, but their eyes and hearts are fixed on some imaginary, non-autistic human being they think I should have been.

2.  I am unacceptable the way I am.  I must change who I am in order to be acceptable and worthy of love.

Needless to say, I hope, these are really not the messages you want to give your already-struggling autistic children.  So please don\’t.  Please follow this mother\’s advice: consider their wants and how they communicate.  Teach consent and bodily autonomy.  Respect their right to say \”no\” to things.  This is how you keep your children safe.