original writing

Type 4: Label Avoidance

Type 3: Perceived Stigma

Type 2: Self-Stigma

Self-stigma happens when an autistic person (or family member of an autistic person) internalizes public stigma.

Last week I gave some rather hideous examples of public stigma.  While some autistic people are resistant to a certain amount of the vile fearmongering lies spewed out by Autism Speaks and similar organizations, we still live in the same spaces as everyone else.  With sufficient repetition, we may begin to believe these venomous ideas.

A relateable example to start with: I have rather thoroughly internalized the idea that I will never be beautiful.  This was never told to me directly.   Instead, it was repeatedly shown to me.  The women on television, on the covers of magazines, and in real life who are usually considered beautiful or attractive are very thin.  Their hips are narrow, and they have little, if any, extra fat.  They are usually of average height.  Their complexions are (unrealistically) flawless.  They do not have bad hair days.

None of this is me.  It\’s literally not in my genetics to look like that.  It\’s not in most peoples\’ genetics to look like that.  The standards are intensely unfair and unrealistic, and poisonous to self-esteem.  In this particular case, fortunately, I don\’t give a crap about being beautiful, because I value other things much more highly.

A more direct example now: stimming.  Stimming, as I\’ve pointed out recently, serves a purpose.  It helps the person regulate themselves or express emotions (positive and negative), which results in a happier, healthier person, and fewer meltdowns.  Pragmatically speaking, you would think everyone would be on board with this plan.  Fewer meltdowns and happier people is good, right?

But no, because it\’s \”too weird,\” autistic people are taught (via ABA or simply others\’ reactions) that it\’s not okay to stim.  We\’re told this is bad behavior, and that we\’re bad for doing it.  We\’re told it makes others uncomfortable (because others\’ reactions and then their decisions after those reactions are somehow our problem).  Essentially, we\’re shamed for being ourselves.  Like the impossibly perfect celebrities on TV and the covers of magazines, this is repeated over and over.

There\’s also the ideas that autistic people are damaged, can\’t feel emotions, don\’t have empathy, or in some really special cases, that autism doesn\’t even exist.  There\’s an account here of a person\’s experience with a few of these ideas.  Thankfully for her and for all of us, she\’s resisting and calling out those toxic ideas.

But I can say from personal experience that some people do believe them.  I actually had a friend tell me that she\’d believed for years that I had no empathy until I literally called it out as a stupid myth.  This was after I\’d spent years literally living my empathy: sharing her trials, being there to listen when she was upset, even bringing small treats or activities for special occasions.

This friend is not stupid, by the way.  She\’s a very caring, intelligent, lively human, and I\’m glad to be part of her life.  My anger and sadness about this revelation was balanced by the fact that she was brave enough to admit it to my face and face the consequences, and the fact that, even believing that garbage, she was still willing to befriend me when I\’m not the easiest person to befriend.

My best guess is that she was told this thing, that autistic people don\’t have empathy, relatively young, by someone whose authority she trusted.  She therefore internalized it without question, and because massive errors in communication can look like a lack of empathy without context, it was reinforced at points.

If anyone didn\’t know?  Yes, I do have empathy, thank you.  Autistic people can be jarringly pragmatic, or not recognize a situation as one meriting a more sensitive response, but that\’s not a lack of empathy, it\’s a difference in how the person views a situation.  

Venomous ideas like this can destroy marriages and families.  They alienate us from our communities.  They also drive autistic people to suicide and increase suicidal thoughts.  Depression and anxiety are considered comorbid with autism, meaning that those mental illnesses are commonly found in higher rates in autistic people.  No surprise, given all these ideas we\’ve partially or entirely internalized.

I\’m 31 years old, having gotten my diagnosis over a decade ago, and I still half-believe I\’m a broken sub-human, because I was never like everyone else.  Being myself was wrong: it got me bullied, rejected, and alienated.  I know, cognitively, that this internalized idea is wrong.  I fight it every day, while I balance \”not weirding out the normies\” with being myself.  Most days, I think sanity is winning.  But on bad days, it\’s harder to believe that I\’m not the twisted, fundamentally broken, less-than-a-human people constantly imply or even outright say I am.

Generally we don\’t talk about self-stigma that much.  Usually the norm for polite conversation goes with you everywhere, so when someone asks you how you\’re doing, you do not say, \”Well, I\’m a little underrested due to family drama and I forgot to take my pills today, so everything\’s kind of an anxious haze, what about you?\”  You lie, and you say, \”Oh, fine.\”  You don\’t talk about how mental illness affects you and so many others, and you certainly don\’t address how you have personally been affected by the destructive lies about mental illness.  Possibly, you don\’t even think about it.

The Internet has allowed people the safety of anonymity, though.  People who do think about it and are suffering will sometimes put cries for help on places like Reddit, in the National Autistic Society\’s forums, and on personal blogs and social media.  These cries are often answered by autistic communities and outspoken autism activists.  Even with such ready support, it\’s hard to unlearn this kind of stigma.  You can\’t simply find a safe space where people truly believe neurodiversity is a positive thing.  Your own skull contains the poison.

Surrounding yourself with knowledgeable fellow-sufferers-and-fighters can help, though.  Here\’s a link to an excellent list of resources to help.

With time, support, and effort, Self-Stigma can be fought.  With care, it can be countered before it becomes a poisonous, self-destructive force inside a person.  

I have a psychology degree, a decent amount of experience with stigma, and a general interest in such things, so I did some research… and I found there\’s a whole bunch of types of stigma.  I also hit upon a nice infographic, which I\’ll repost here.  I\’ll go through each of the types with autism-relevant examples from my experiences and reading.

Type 1: Public Stigma.  

The charming \”Ransom Note\” public campaign by New York University is a good example of this.

Text: We have your son.  We are destroying his ability for social interaction and driving him into a life of complete isolation.  It\’s up to you now. ~Asperger Syndrome

This is stigmatizing in a few ways.  First, social interaction and your ability thereof is a skill… i.e., something that can be learned.  So, no, there is no destruction here, it\’s simply that the child may need extra support to learn those social skills.

Second, do you know why autistic people tend to be more isolated?  It\’s not because we don\’t want friends, or don\’t try.  It\’s because neurotypical people tend to reject people different than them.  When that happens over and over, the person loses the desire to try again.  Saying that\’s their autism\’s fault is not only absurd, it\’s literally the opposite of the problem.

Third, this ad commits the idiocy of assuming you can remove the autism from the autistic.  You can ease the ways an autistic person suffers, like providing sensory support, treating depression and anxiety, allowing them to make decisions (and mistakes!) on their own terms.  And the results may be that they act less \”weird,\” which is then mistaken for \”less autistic.\”  The fact remains that you cannot cure or remove autism, which is a neurologically-based difference, from an autistic human.

This campaign, and others like it, have informed the public opinion of autism.  We are, apparently, a disease, threatening, and something to be feared.  This was the message given to the general public.

Here\’s another horrifying ad by Autism Speaks (stupid name; no autistic people are listened to there).  And here\’s the transcript, in case, like me, you can\’t follow the whole thing.

They\’ve personified autism into some kind of malevolent disease-demon, infecting innocent children and making them have greater challenges than most kids.  Autism Speaks is happy to blame disintegrating marriages on this nonexistent entity rather than the actual children, while demonizing what makes those children unique.

Autism, to Autism Speaks (bullshit name), is nothing less than evil.  Which they, of course, have set themselves up as the \”Good\” to fight against.  There\’s a lovely message of universality, with mentions of various countries and religions.

It\’s a pity it all misses the truth, which is that there is no demon.  If autism has a representative, it\’s your children.  It\’s adults like me.  It\’s the collective community we adults have built.  We don\’t want your marriage to fail any more than we want our own relationships to fail.  We don\’t want you to go bankrupt paying for therapy that traumatizes and stigmatizes us.  We certainly don\’t want you to lose hope.

Mostly, what we want is to be ourselves.  To not be rejected for being different.  No amount of demonizing autism will make that happen.

Some excellent general examples of the typical public stigma experience can be found in the article here.  Highlights include, \”autistic people don\’t have empathy/can\’t feel emotions,\” \”autistic people are damaged,\” and how autistic children are all apparently soul-draining, life-destroying monsters (due to how some parents talk about them).

All of these are examples of Public Stigma, the first of seven types of stigma.  

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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.

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Link to the handout

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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.  

This is less an issue with autistic people as people, and more an issue of how many of those expectations are flatly unfair.

First and most obviously to anyone of my generation, if you get a college education and aren\’t rich, you have to take out loans.  Lots of loans.  The days of being able to put yourself through college on a summer job or a part time job during the year ended in the 1980s.

Show/Hide

The fun part (sarcasm) about Medicaid is that its income restrictions (meant to make sure only the poor and disadvantaged use it) haven\’t scaled with inflation over the years, so you also usually have to be nearly destitute to benefit from it.  Remember that good job you wanted?  Yeah, probably not happening if you need support services.

Even if you can get Medicaid, finding the right services is extremely challenging.  A good supports coordinator is supposed to do that for you, but with the high turnover rate, good ones can be hard to find, and in some cases, your area may simply not have what you\’re looking for.  If you need assistance moving around, taking care of things at home, or simply want something to do during the evenings, you\’re at the mercy of what\’s available to you.  In rural areas and some suburban areas, that\’s not necessarily much.

Having a car is often essential to having a job and a social life, but like a house (on a lesser scale) it isn\’t necessarily affordable (cost of a car, and then insurance, maintenance,  and repairs) or even feasible.  With certain types of disabilities, such as visual difficulties or anxiety disorders, you can\’t even pass the tests or complete driver\’s ed training for your driver\’s license.  In fact, fewer and fewer teens in general are getting their drivers licenses.  Not surprising, then that only 1 in 3 autistic teens are successfully acquiring their licenses.

My first car was a gift from my grandmother, after she decided she was done driving herself around.  Had my need for a car not coincided with that occurrence, I might not have had a car while I was in college.  Trying to buy a car while in college would likely have been impossibly difficult for me, as I was struggling to simply survive college for the first couple years.  And that\’s assuming the money was even there for such a purchase.

With less mobility (either due to lack of a car, or due to other transportation difficulties), it becomes harder to keep up a social life.  Once out of school, the forced daily social interaction disappears, and we\’re left with online communities and little else.  A church can offer some activities, as can supports derived through Medicaid or paid out of pocket.

Beyond that, though, the \”easy\” routes are gone, and you\’re left trawling for interest groups, visiting local events if you can (again, transportation!), and spending lots of time online.  Finding a spouse in all of that is… difficult, to say the least.  Autism is literally defined by having significant difficulties with social interactions and rules.  And a managing relationship is basically that, but all the time, and with high emotional stakes.  Autistic people tend to be fantastically loyal, which endears us to some people, but the strain of routine miscommunication can be difficult for both partners to bear in the long term.

For me, I didn\’t find my spouse, he found me.  This was fortunate, because during most of school, I radiated \”leave me alone\” vibes.  I\’d learned that people tended to be cruel to me, and there weren\’t sufficient positive reasons to interact with people for me to bother.  If you were decent to me, I was decent to you, and otherwise I tended to ignore you.  This does not lend itself well to meeting new friends.

So I knew Chris from my second high school.  He happened across me when I\’d had enough of the day and was having a good cry on the library steps.  I had a class with him, so he wasn\’t simply some stranger come to gawk at me.  He proceeded to plop himself down and sit with me while I was miserable, asking after my wellbeing despite it being blatantly obvious I was not doing well and he was asking to get an unhappy earful.

We did not magically become close friends that day, but I remembered that incident, and so when he said hello again, a couple years later, I responded instead of ignoring him as I would most random messages on Facebook.  This repeated about once a year during college, still with no romantic interest on either side.  We worked at the same place one summer as well, and he was again friendly without expectations or demands of me.  One year (2013, I think?), he messaged me again on Facebook, the conversation never really died after that.

This is all to underline that while the marriage we have now is definitely a partnership of equals, the actual groundwork was all by his efforts. Most autistic people don\’t get that lucky, and don\’t have persistent former acquaintances turn into friends, and then partners in life.  Rather, the autistic person has to put in effort to find friends, through dating sites, church, interest groups, etc, and one of those may turn into a romantic partner, and perhaps into a life partner.

With all the debt and/or limited finances you\’ve accrued, even if you find a good spouse, kids are not necessarily an option.  Not everyone wants kids, first and foremost (which can break relationships, by the way!).  But also the sheer expense makes it not feasible for some couples.  In the US, the cost of raising a single child is around $245,000.  That\’s not including a college education, and if you\’re still in debt paying for your own education, how are you supposed to afford a kid, and then help your kid with their own education?

For autistic people, there\’s worries about autism being genetic and passing it or any mental or physical illnesses you might have on to your kids.  There\’s also the question of whether you can manage yourself and your life as well as a tiny defenseless human.  Or whether the people in your life will allow you to do that, for some people with higher support needs.  (Having high support needs doesn\’t mean you can\’t make a good father or mother, but it does make it more complicated.)

Kids or not, eventually you will grow old.  People my age tend to have less saved aside than previous generations, due to the factors I listed above, and more.  Retirement, therefore, is a bit of a pipe dream.  Eventually, though, our bodies begin to fail us more and more, and work becomes more difficult.  It\’s likely that millennials like myself will be expected to work to age 70, perhaps even longer, in order to qualify for Social Security.  Health advancements might make that extra time more feasible for the general population.

But the autistic population is a bit of a different story.  We already struggle to have work.  Our life expectancies are much less than our peers.  Mental illnesses, seizures, gastointestinal problems, even heart disease, all occur at higher rates for autistic people.  Some estimates for an autistic lifespan are as high as the 50s, some are in the 30s.  Compare that to the current general population\’s life expectancy (70), and you\’ll get the grim picture.

Obviously I won\’t know my personal life expectancy until I actually die, but I got good genes on one side of my family for longevity.  Also, one of the main killers of autistic people, suicide, is not currently a factor.  I have depression and anxiety due to the strain of not fitting in, but my depression is on the milder side, and the emotional pain is not so great and all-encompassing as to outweigh the knowledge of what my death would do to the people that care about me.

Retirement for autistic people won\’t be a simple affair.  The popular conception of a lengthy vacation until your death is mostly a dream at this point.  It\’s better for people overall to have some form of meaningful activity to do with their lives.  Volunteer work, for example.  That is most likely what my retirement, should I live long enough to have one, will look like.

I\’ve deconstructed the \”normal\” expectations for a person\’s life in the US, and why they\’re unfair and unreasonable, especially for autistic people, it begs the question: what is reasonable?  The answer varies by the person.  This is why person-centered planning is important: finding out what the person wants in life, what their skills are, what their interests are, and what their needs are, is how you begin figuring out what kind of life to aim for.  (For a really good parent-written book on this subject, read this post.)