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There are two majors schools of thought around autism at present. 

Autism as a Disease

The first, the older of the two, is the one most often held by medical professionals and parents: autism is bad.  It makes our children and loved ones suffer.  We should look for a cure and try to help those with it rather than letting them struggle on their own.  This viewpoint includes the medical model of disability as well as Autism $peaks\’ brand of demonization. 

At its best, it\’s the worried but ignorant parent, misled by possibly similarly ignorant others in positions of authority.  Such people simply want the best for their loved ones, and see the autism as the summation of the child\’s problems, whether those problems are caused by society or internally.  But something that, with the right treatment, could be taken away so their cherished child would finally thrive. 

At its worst, this philosophy devolves into rampant ableism.  Tyrannical individuals who won\’t stomach human diversity.  Only some idealized neurotypical \”way of living\” is correct, and all that don\’t fit into it must be forced to do so.  Abusive and coercive ABA \”therapy\” is common, and the mental and emotional scars of such cruelty \”for your own good\” can last decades.  Pointing out that some of our disabilities are societally created, like the unfairness of the job hiring process, doesn\’t typically phase these kinds of people.  The retort tends to be, \”that\’s just how it is, deal with it.\” 

Keep in mind that while many things are wrong with this philosophy, it isn\’t totally wrong in every aspect.  It acknowledges that autism comes with challenges, regardless of whether those challenges are medical or social.  It recognizes the need for help and support.  It\’s what got autism research started, and what lead to the good therapies we have, such as Floortime, our AAC tools, and things like probiotics, enzymes, and nutritional supplements. 

Neurodiversity

The second is the neurodiversity movement, which opines that autism is good.  That human diversity in general is good, and that the human species needs people who are different to survive and thrive.  The social model of disability features here, which notes that some disability is socially created. 

For example, the state of hiring for jobs, especially ones with upward mobility, is slanted heavily against autistic people.  When getting a job, it\’s far more often \”who you know\” than \”what you know.\”  Autistic people may be experts at our hobbies and interests, but without the broad social networks and ease of communication (and white lies) that our neurotypical peers have, we typically don\’t get hired.  And if we do, we\’re often fired for not fitting in.  This is simply how things currently work.  It is not an innate problem with us.

The best of this philosophy is perhaps a conscientious young autistic adult, likely abused by \”therapeutic\” ABA, fighting for inclusion for all people to the best of their ability.  Typically such a person is highly verbal, and while they may struggle in day-to-day life, they may not suffer the crippling chronic medical issues that other autistics must face.  As such, they may not advocate for all the same things that someone with epilepsy, intellectual disability, and gasto-intestinal issues might.  And they may not understand or be able to advocate for users of AAC.

The worst of this philosophy is the sort of person that thinks their experience of autism is everyone\’s, and while they may struggle with some things, overall their perception of their life is literally, \”There\’s nothing wrong with me, and if neurotypical people would stop being jerks and just accept us, we\’d all be fine.\” 

This sort of person may believe that people with more serious disabilities simply need to try harder, or that all their problems are created by neurotypical people, or that if other autistics would adopt a certain diet that helped them, and then everything would be fine.  Unfortunately, you cannot simply diet away epilepsy, visual processing differences, muscular communication challenges or cerebral palsy.  Certainly, a good nutritious and balanced diet can help manage your symptoms and improve your quality of life, and might even help improve the severity of these challenges.  But cure?  No.  This mindset is shortsighted to the point of being cripplingly flawed.  Challenges exist.  Help may be required to manage them.

The other falling down point here is that making a society that works for all kinds of human diversity does not start by telling one group to drop everything and change.  At the moment, the situation is mostly the neurotypical majority telling the autistic minority to do exactly that.  But what these sorts of people advocate for is the polar opposite: autistic people shaping policy for ourselves, without input or care for neurotypical folks.  And sometimes, without input or care for members of any other minority group, such as our fellow minority groups: black and brown folks, people with mental illness, religious minorities, and others.  While only one of those examples fits the \”neuro\” in neurodiversity, these other minority groups include autistic individuals. 

In fact, even if the world was literally only neurotypical people and autistic people, and all those other groups didn\’t exist, the fairest form of society is a compromise.  Autistic needs should be supported and accommodated, but those needs vary, sometimes widely, and having neurotypical people avoid things simply because they might upset an autistic person means a lot of metaphorical walking on eggshells, possibly pointlessly. 

Putting It Together

I\’ll start out by saying I was bullied in elementary school, from grades K to 3.  It only stopped when I changed schools.  Particularly galling was the fact that it was a Christian elementary school, and a small one.  You\’d think people would have, I don\’t know, noticed, cared, and done something about it.  Apparently not.

This is not uncommon, as I understand it.  I can\’t honestly remember how much I told my parents, or the school.  I do think I told my mother, and despite her crippling depression she did give me some pointers that helped somewhat.  The situation wasn\’t resolved, though.  And I don\’t think the school did anything that helped, assuming they believed me at all.  Upon arriving at the new school district in a different state, I essentially resolved to be antisocial forever to avoid being in a similar situation ever again.

That resolution lasted right through middle school, where one of those \”let\’s help the outcasts and outsiders make friends!\” groups slapped me together with a pair of fraternal twins who decided to adopt me as a friend.  As things sometimes do, one friendship led to another and by the time I moved again, I was losing a small network of people I\’d grown fond of.  So it goes.

This was in the 90\’s, which was before smartphones were invented, before social media became a thing, and before everyone carried the Internet in their pockets at basically all times.

This article focuses on in-person bullying, specifically that experienced in schools.  While this is absolutely a current concern, notably missing is any discussion of cyberbullying.

Some of the same considerations apply: presume competence, believe the autistic person, and take care how you ask for information about what\’s going on.

For an article more focused on cyberbullying, Kevin Healey has this story, and there\’s an additional resource here.

So far in my life, I have yet to meet an autistic person who hasn\’t been bullied.  Usually we\’re the favored targets, above and beyond all typical bullying, due to our tendency to take people at face value, our unusual mannerisms and passions, and our smaller support networks.  Let\’s do better for today\’s kids.  

It can be really hard to quantify what makes for a good therapist.  Most typically, I\’ve stumbled, blindly, through finding my professional supports.  That haphazard discovery process seems all too common in families with autistic people, unfortunately.  Whether it\’s Medicaid assigning you people or picking blindly off a list of qualified individuals that are covered by your insurance, there\’s a lot of trial and error involved in finding good support for yourself and/or your kids. 

That\’s why people often rely so heavily on recommendations- whether that\’s from parents at parent support groups, or directly from autistic individuals.  If you aren\’t already, I strongly suggest you get hooked into the local autism community. 

It\’s not always possible to get those recommendations, or even if you do get them, the recommended people may not be available to serve you, or turn out to be as good as you were hoping. 

That\’s why I was pleased to see this guide to selecting a Speech-Language Pathologist.  While it is very specifically geared for that type of support service (and includes a guide to why an SLP is such a good investment), many of the recommendations translate effortlessly into helping you select a good therapist, home care professional, peer mentor, and even primary care practitioner. 

I can\’t stress how important it is to have a supportive care team that listens to your concerns and works with you.  With these criteria in hand, you can choose safe and effective professionals and support staff that will help you or your loved one be a happier, healthier, more successful version of themself, not abuse them in pursuit of some imagined standard of normalcy.  

I typically don\’t find anything of interest in checkout lines, especially not things related to autism, so I was rather surprised.  I decided to buy it (rather expensive, at $15!) and find out what the New York Times thought was essential for people to know about autism and people like me.

The intro article was by Steve Silberman, which was a promising start.  He\’s known for his support of the wider autism community and his care to point out that autism has been in the human genome for hundreds, if not thousands, of years.

On the whole I approved of most of the intro article, though I thought describing Andrew Wakefield\’s set of case studies regarding the MMR immunizations and autistic traits as \”launching a propaganda war\” and Wakefield himself as a \”charlatan\” was a bit much.  There was also a very brief mention of Dr. Asperger\’s link to the Nazi party, which kindly described that as \”shadowing him\” and politely failed to mention the fact that Asperger literally sent less verbal autistic children to death camps.

After the intro article, the magazine went more into short \”my life/my family\’s life with autism\” stories arranged into categories, such as  \”Autism and Science,\” \”Child and Family,\” and \”Aiding the Autistic.\”  I was pleased by the number of women included in the stories, and there seemed to be some effort to include people of color within the pages as well.  Since autism is not a \”whites only\” condition, I\’m glad to see this effort to show more than just the usual faces for autistic people.

There was a somewhat of a bias in the article towards employing autistic people in tech jobs.  While some of us can make livings that way, it\’s not true that all of us can or even want to, even when the appropriate work environment is provided.  So I found that a limiting factor of this publication.

Regarding the article on autism-friendly travel, it talks about SeaWorld Orlando, which I visited very early this year.  The article seems to imply that the entire of SeaWorld is now certified, which… surprises me, given the noise level of the place overall.  I did visit the Sesame Street section, which was a bit better and had other amenities, including a sensory-friendly quiet room and a family resting area.  It seems like the certification only requires a single quiet room for an entire park, which…  seems excessively minimal to me.  SeaWorld is enormous and exhausting to walk through.  I\’d honestly argue for one quiet room for every two bathrooms…  But I\’m probably asking a bit much.

I was rather disappointed with the science aspect of the magazine.  Much of the most promising research into autism is now done with brain scans and various forms of neurofeedback and brain stimulation.  The only things covered in this publication were genetics (still basically a dead end) and chemical exposures during pregnancy (which is a great way to guilt parents- very unhelpful).  Those two things were basically it for the science section, save for a little blurb about how the MMR vaccine doesn\’t cause autism.

Where is the interview with John Elder Robison about his experience with TMS?  Where is the discussion of the interesting differences in brain anatomy we can see on brain scans?  Heck, where\’s the discussion from the autistic community on neurofeedback?  I have some notable things to say, like how I can now smile at cameras and babies, after almost 20 years of being unable to.  Are these too new, too unbelievable, too scary?

The highlight of the publication, for me, was an article called How to Meet Autistic People Halfway.  It talks about how autistic people are social, but our mannerisms and communication skills may make it appear otherwise.  This quote was what really made the article for me:

Insisting that autistic people behave in ways that they are unable to can lead to feelings of learned helplessness, self-defeating thoughts and behaviors, and eventually, social withdrawal. 

As an autistic participant in one study explained, \”I have been endlessly criticized about how different I looked, criticized about all kinds of tiny differences in my behavior.  There\’s a point where you say, \’To hell with it, it\’s impossible to please you people.\’\” 

This sentiment exactly is where a lot of autistic adults end up, myself included (to some extent).

Worth Your Read?