Learning to Adapt

I saw a rerun of “America’s Got Talent.” On the show, a deaf woman sang her own original song, with her own original, beautiful voice, and with her own way of feeling out the notes and vibrations; she had her shoes off to feel them through the floor. I thought that bit was amazing. It got me thinking: I know what we do when we have a perceived disability: We adapt. We adapt to get through the world not made for us.

For some of us, the learning process is easy, especially when the person is supported and accepted as they are, without shame or blame. Unfortunately, the vast majority of us have a hard, trouble-ridden process of adapting. I used to speak stiffly and with echolalia well into adulthood, especially since I was not taught how to mimic good speech properly, in the right environment. I know that through childhood and early adulthood, I have been bullied, made fun of, tricked into compromising pranks, and even mocked by adults supposedly watching out for my best interests. However, I later found these adults who looked out for me in a group “program” setting. It was there that I finally felt like I was in the “inner circle” I longed to be in. I finally, in my thirties, found the way to speak with a natural flow and rhythm.That group therapy has been discarded through budget cuts now, but it was the first time I actually felt like I fit in somewhere. It was a new feeling to me; I did not know what to with it at first. The point of the story is, in the best environment, where I am supported and encouraged, I learned an essential skill.

A lot of people with autism do not receive this essential support at all, or not until late adulthood. I guess I am one of the lucky ones. I would like to get some tips on how to create that particular environment online, where I apparently have a tiny sphere of influence. I want to create a space where people can easily be themselves and supported, without blame or shame. I want to create a space where we can learn to adapt and practice adaptation safely. Anyone want to help?

April Post 11: Autism Portrayals in Media 

Much of the Autism Awareness talk has died down by now. Even the store displays are showing the leftovers from puzzle piece junk, like keychains and stuff.  

I’ve decided to talk about an issue that seems to plague the portrayals of autistic people in the media. The fact is, nobody is listening to anybody else about how people really are. I know for a fact that it plagues all portrayals, but I am focusing on autism here. I have struggled to find a similar portrayal that falls far short – and needs somebody to explain to these people how – and I found it in Japanese Engrish.  

I’m only giving you this link to the site because it is very offensive, not only to English speakers, but it makes the Japanese look like morons, just because they don’t know the ins and outs that native English speakers do. Now, it’s kind of like this Japanese Engrish unlearnedness that plagues portrayals of autism in the media. Many of us autistic people find most portrayals offensive. So far, the best portrayal I can find is Billy Cranston in the new Power Rangers movie. Otherwise, even little Julia from Sesame Street has some traits that offend autistic people. This comes from people not listening to those of us with autism. 

Now, tell me: would you rather have a portrayal of autism that is accurate and tasteful, or an autism portrayal that is like Japanese Engrish?

Getting the Portrayal Wrong 

I’m remembering a really bad movie I saw last year: Zoolander 2. More importantly, I’m remembering the Razzie award-nominated portrayal of All, the supposedly gender fluid model in an earlier portion of the movie. This is in no way a defense of the portrayal. This is an explanation of what actually is wrong with the portrayals that come up with marginalized people, especially if those specific people are not involved. The problem is this: the portrayal that does not involve actual research, involving actual people, is usually stereotyped, flat, often deviant, and almost always wrong.

Does anybody remember the 1988 movie “Rain Man?” I know that you are probably groaning right now, considering my regular readership. Most autistic people hate Rain Man and many subsequent portrayals of autism that do not involve the actually autistic. This “Rain Man” is a perfect example of what I say – that a first and many subsequent portrayals that are not involving actually autistic people. The only portrayals of an autistic person I have liked are the one by Claire Danes, of Temple Grandin, and Dr. Latham from Chicago Med. (I’m currently wavering on Dr. Latham – it seems a little checklist-driven.) The point is, a person from the margins of society must be involved for the portrayal to be whole. My problems with most portrayals is this:

Stereotypes and Deviancy

My initial problem with a marginalized portrayal is that it’s usually based on stereotypes. Remember the portrayals of blacks in the 1930s? They were usually a Mammy, a singer, or someone usually incompetent. Don’t get me started on how the black female romantic lead had to be light-skinned – or white-looking. Usually, the dark-skinned black person was regulated to the role of prostitute or criminal. It’s sad that I have to look to the 21st Century to see Viola Davis in non-criminal roles – and her resume is not even criminal free (How to Get Away With Murder, anyone?). How long before a regular actor of dark skin can escape portraying a criminal?

Wrongness

It’s absolutely necessary to note, back in Rain Man, that the man who is the real-life inspiration behind the “gold standard” for autism portrayal, diagnosis and future study, was not even autistic. He had FG Syndrome, a genetic anomaly on his chromosomes. It mimics autism, but it is not autism. The reason I look at Claire Danes’ portrayal of Temple Grandin is because it was much more accurate in showing how autism can actually give a different world experience, and might actually – GASP!!! – help the person. It’s a shame that a person along the margins of society cannot be given a proper portrayal unless they come out of the closet and show people how they are.

The Problem

The problem with all this is: people rely on portrayals of others and their own experiences to believe the person when they come out as, say, autistic, or gay, or even with anxiety. Due to these inaccurate portrayals of the trait or condition, they usually do not believe an autistic person unless they act like Rain Man, of more appropriately, “my cousin’s uncle’s brother’s sister’s former roommate’s son – he is autistic.” The autistic person has to literally justify their diagnosis. They have to lower their competency to be believed. They have to act like Rain Man.

The Saga of Dr. Latham, As Related to Autism – Chicago Med 

As of last week, I discovered a character that was admittedly autistic. His name is Dr. Isidore Latham. He seems to have a good amount of the traits of autism – difficulty with reading emotions, struggles with change in routine, social awkwardness. I’m sure there is more to come. I’m sure there are blogs and posts specifically designed to pick apart the characters and inaccuracies, so I do not intend to do that. What I wish to do is support the character. As I have said in a previous post, the fact that he is played by Ato Essandoh and, as I have learned, is Jewish as well, is a step forward in portrayals. Previously, they have usually been, intentionally or not, portrayed by white men who go by the dominant religious affiliation of the series. I would applaud the trend of varying portrayals of autistics. I am watching Chicago Med for its treatment of Dr. Latham’s treatment concerning autism. He is an adulthood diagnosed who struggles with it. I am watching because it seems like a good portrayal. I do not want to be disappointed. The big thing is, I want a performance that is not stereotypical. I mean, early portrayals of autism have been extremely narrow and stereotypical, as dictated by Raymond “Rain Man” from the famous movie. I guess what I want is the portrayal to be accurate…and, maybe, another autistic can come into the show to display how it is on a spectrum – how it varies. Hopefully, this is not more than the Chicago Med people can give.

What Does Autism Look Like Anyway? 

When I reveal that I am autistic, or my mother does, we often get this response: “But you don’t look autistic!” Yes, I do. I got my formal diagnosis from the UCLA Medical Center as a child. Do you think I would lie to you? Why don’t you believe me? What does autism look like to you?

According to popular media, autism is usually depicted by a white cisgender male, and usually a child. They are often portrayed as some sort of savant as well. That is an extremely narrow and stereotypical view of autism, and it is not helpful when you reveal it to people to spread understanding among them.

Is it because I am a woman? I can assure you, autistic women exist. They often go into adulthood without their formal diagnosis, often waiting until their fifties to get this diagnosis, often when researching their own children’s or grandchildren’s diagnosis. Just because we are a smaller group does not mean we are nonexistent. That is just ridiculous to think.

Is it because I am an adult? Usually autism is given a child’s face. Also, that person is in meltdown or other extreme distress. We are not always having meltdowns. Meltdowns are usually caused by a trigger. It could be a sight, sound, smell, taste or touch. If you need something to compare the trigger to, look not further than an addiction. Or PTSD. Or various other dynamics which involve avoiding triggers to stay sane.

(The following does not apply to me, but this is often a reason people do not “look autistic.”)

Is it because of my race? There may be more formal diagnosis among white people, but there is also an existence around every known society. I recently saw an episode of Chicago Med with an autistic doctor played by somebody who was black. (Yes, I do say “black.” It’s perfectly OK to see what race a person is. What is not OK is to assign a lesser or greater value to that race.) I applaud Chicago Med for that casting choice. It gives a sort of face to an entire race of autistic people not represented in media. Not to mention that most races are given say, one token representation, and it certainly is usually not with neurodiversity. You usually have to be white for that.

Is it because of my gender identity? Is it my sexual orientation? I could go on and on about how a narrow stereotype locks many people out of perceptions of autism, or various other conditions for that matter.

(Back to what applies to me again…)

Open your minds, people. Autism is not equipped with a specific physical “look” or “act” to be obvious. A specific facial expression or profile does not exist in the autistic spectrum.

When one specific trait, such as autism, is used to describe a group of people, try not to be surprised when the traits not used to describe them vary widely. It would have to call on other traits to be mentioned in common to get a grasp of the people you are describing. Don’t put people into boxes. They don’t fit.

What I Can Tell You About Autism 

Alright, I admit it. I’m not a psychologist, social worker, psychiatrist or employed worker in the brain field of study. I’m not one of these people who have book-learned autism from indirect experience. That does not mean I am completely worthless considering the experience of autism, even though the vast majority of people, including autism parents, think I am worthless because I am autistic.

I can tell you about the shame I feel when people will not vaccinate their children to make sure they are not like me.

I can tell you about the hate I feel when I hear people wanting to “cure” the world of me.

I can tell you about the times I was taken advantage of because nobody wanted to actually teach me how to navigate social situations.

I can tell you the countless times I was awkward because everybody else learned social skills by osmosis, or so it seemed.

I can tell you about how I was forced to sit with the teacher at recess because I would get too frustrating for untrained people to run and play.

I can tell you how your attitudes toward autistic adults will negatively affect relations with your future autistic adult, aka your autistic child.

I can tell you the shame of knowing that there are people who, in the words of one of those people, say I “suffer from nothing,” aka my experience does not count.

I can tell you why I would rather spend my time online, talking with other autistic people, instead of trying to explain my struggles with those who stop up their ears and refuse to listen and understand.

I can tell you about the times I cried from childhood bullying.

I can tell you about the abuse I suffered at the hands of my siblings, who would insist I deserved every bit of financial, mental, emotional and sometimes physical abuse.

I can tell you of the rejection when said siblings finally sent me home to my mother, because I did not satisfy every monetary greed enough for them.

Fortunately, I can’t tell you of a time I was raped. Unfortunately, many of my autistic sisters can. I was lucky there.

I can tell you of rejection.

I can tell you of the wish for me to be a recluse, away from the world.

I can tell you of a time I wanted to die.

I can tell you now that I crawled by myself out of the hole of despair.

I can tell you of finally learning I was not quite so alone.

I can tell you that I have finally learned to accept myself as a lovable, worthwhile person.

I can tell you that I have a true and acceptable experience, no matter what society thinks.

I can tell you that acceptance has been the only thing which has given me permission to go on living.

I can tell you now that I understand how rejection from family members has nothing to do with me, only with them and their baggage.

I can tell you that I now understand people love me, that I’m worth loving and caring about.

Would you tell a flying bird that they do not understand how to fly? That’s what you are doing when you are telling me I do not have a good enough viewpoint with autism.

Hating on a Muppet

Julia, the autistic character from Sesame Street

I’ve been looking over this new Sesame Street character, Julia, and know she has autism. She carries some of the traits of autism, including sensory issues and social troubles. What I have also come across is the strange stance that there is a giant conspiracy afoot, apparently to hide the “vaccine injury” (I am NOT making this up) known as Autism. Oh, there’s a conspiracy alright. The conspiracy is to save the people from dying from Infantile Paralysis, Measles, Mumps and Rubella. The anti-vaccine people say that Sesame Street in general, and Julia in particular, are puppets of Big Pharma, and are trying to get this terrible, horrible, no good, very bad thing known as Autism “normalized” into the public. The anti-vaccine lobby is extremely ableist, which means they will hate any effort to bring acceptance to people with so-called “vaccine injuries,” including those with disabilities. Their aim is to cure people of the Autism Tragedy, which cannot possibly have any positive effect. (Even though Dan Aykroyd, Daryl Hannah and Temple Grandin are all wonderful individuals due to their Autism, hmmm?)

First, of all, let me say that much of anti-vaccine agenda is based on false and misleading data. You can Google any source and defend both sides of this vaccine issue, but let me tell you that most of the anti-vaccine lobby boils down to two people: Andrew Wakefield and the Ableist, Emotional Parent. Andrew Wakefield produced one study, whose results were not duplicated, and which was retracted by Wakefield himself, admittedly corrupted, motivated by his own vaccine patent, and who finally got his license revoked. The Ableist, Emotional Parent usually believes that vaccines cause autism because they happen at about the same age. My example of this, Jenny McCarthy, noted that after her son got a certain vaccine, he had a certain look in his eyes, saying “no soul.” Let me give you a note: saying an autistic look means “no soul” is extremely prejudiced. Do I have no soul? Also, to note, the story with Ms. McCarthy is very emotional, so it seems rational in her own eyes…and she talks frequently about the “motherly instinct,” especially when it counters established scientific theory. My question to Ms. McCarthy is: Have you never been wrong? Are you omniscient when it comes to your son? Now, I doubt she knows absolutely everything. But she acts as though she is wise in her own eyes, which is to me a very dangerous thing, especially since she seems to regard autism as worse than the “f***ing measles,” as she once said the autism parents would rather have.

Of course, regarding autism worse than measles is blatant ableism. Ableism is rife within the anti-vaccine lobby, which is why they consider autism a boogeyman to fear and fight. Have you heard of anyone lauded by Autism Speaks as a positive influence? Does Autism Speaks tell you that Dr. Temple Grandin is a top authority in the beef cattle industry, particularly when it comes to leading them to where they are supposed to go? Do they even mention Dan Aykroyd, who has spoken about his particular flavor of autism, and his work in comedy and film? No, they simply say autism will destroy any semblance of a disability-free, and therefore model, life. Ableism is simply looking at anything that makes a person abledly different and counting it as a loss, or a strike against that person’s humanity. Ableism says that the autistic MUST be cured of their autism, or they are not a full human being. Ever.

Where does this leave poor Julia, and the autistic children that Julia can relate to, according to the Ableists? That leaves Julia and autistics alike in a sort of invisible no-man’s land, in a place where the only appropriate response is pity and shame. Of course, that will eventually lead to locking them away in jails, prisons and other institutions, where the poor, pitiful things belong, according to the ableists. Of course, it also romanticizes the murders of autistic children, too, and encourages them to suicide, I’m sure. The truth is, the anti-vaccine lobby hates autistic people succeeding, because it has chosen to hate autistic people. I have decided to applaud Sesame Street’s little creation, Julia. It comforts me to see that there is someone like me on the screen, despite the fact that the anti-vaccine lobby hates her, and me in extension.