Autism Warrior Moms and My Mom

I do not consider my mother an autism warrior mom. Warrior moms and my mother are very different. Take autism warrior moms. They prescribe restrictive diets. They have “therapists” beat the children, starve the children and hold their children’s favorite things above their heads until they exhibit neurotypical behavior. Of course, I am referring to Applied Behavior Analysis. They don’t give any rewards until the child passes for neurotypical in the therapists’ eyes. They even pump caustic bleach up the child’s rectum in hopes for a “cure” for autism. And when their children finally grow up and rebel, they often murder the child, and society takes their side.  

My mother was not the usual autism warrior mom. Sure, she’s a warrior and a mom, but she knows that things are there to protect me, not her ego. She never did things like restrictive diets, ABA and CD/MMS to Make Cambria Neurotypical Again. Of course, I was never neurotypical in the first place. She also told me that. I exhibited signs of difference as a baby. Sure, she fought for me to have speech therapy and social training, but not really passing for neurotypical. She explained to me that I was learning how to act in public. In private, I could be myself. She taught me basic life skills, like cooking, cleaning and paying bills. (Of course, with pre-cut frozen vegetables and basic sauces, cooking is really quite easy for me.) Eventually, I will learn to drive. I want to drive badly, so my mother can focus on getting better. What I am trying to say is, I can generally take care of myself, which is more than I can say for most “warrior mom” children out there.  

The difference between my mother and “warrior” mothers is, there was a modicum of acceptance concerning my mother. Once she learned about autism for the first time, she prayed and asked God for guidance. (As you all know, we are Christians.) I think she never really knew about ABA, but I don’t think she would have approved of the techniques. When I had to stim, I did – even if it meant running up and down the hall six times. I am not traumatized by her upbringing.

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April Post 6: Hairstyling 

There is an article on the BBC website regarding a barber who will cut an autistic child’s hair. Apparently, you have to go to a special hairdresser or barber to get it done. What a surprise! We autistic people are such terrible people to deal with that it takes somebody special! Before I go down that road, I think I might offer a valuable point. Now, I don’t specifically have an episode where cutting hair was an ordeal, but I have a sibling who did. Apparently, it’s hard for an autistic child’s parent to get their hair cut and styled, prompting many hairdressers to completely turn autistic children away! Now, I think I might be able to give some insight to why this is so: to me, a haircut is very hard. Some of the time, the comb or scissors pulls on small hair in my head, making it feel as if someone is sticking a bunch of needles in my scalp. I prefer when my hair is wet, so I don’t get that feeling of needles as often. I have been able to sit through an appointment without crying easily, but my sibling was not able to for a few years as a child. There have been studies that prove siblings of the autistic have autistic traits. Perhaps this happens to be one of them with my sibling.

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.

The Cold Within, by James Patrick Kinney – A 1960s Poem For Our Time

Read this poem, take it in. This is the political problem for our time – cold, hard hearts ON ALL SIDES.

*****

The Cold Within  – by James Patrick Kinney

Six humans trapped by happenstance
In bleak and bitter cold.
Each one possessed a stick of wood
Or so the story’s told.

Their dying fire in need of logs
The first man held his back
For of the faces round the fire
He noticed one was black.

The next man looking ‘cross the way
Saw one not of his church
And couldn’t bring himself to give
The fire his stick of birch.

The third one sat in tattered clothes.
He gave his coat a hitch.
Why should his log be put to use
To warm the idle rich?

The rich man just sat back and thought
Of the wealth he had in store
And how to keep what he had earned
From the lazy shiftless poor.

The black man’s face bespoke revenge
As the fire passed from his sight.
For all he saw in his stick of wood
Was a chance to spite the white.

The last man of this forlorn group
Did nought except for gain.
Giving only to those who gave
Was how he played the game.

Their logs held tight in death’s still hands
Was proof of human sin.
They didn’t die from the cold without
They died from the cold within.[1]

*****

I’m not asking you to change political beliefs. I’m asking you to open your heart.

America needs a hero.

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.