An Open Letter to the Newly Minted Parent of the Autistic Child


Dear Parent of the Autistic Child, 

I know you are somewhat scared for your son. What will he be able to do in his life? Will he need constant care? Will he be able to take care of himself? Is there hope for him? Autism is a big pill to swallow. But there is hope, and there is hope for your child. 

I need to tell you a few things about myself. I am an autistic adult. Which means, I was one of those autistic kids. It’s not that hard a jump to make. I have held down a job for six years. I currently take care of my mother full time, and maintain a small home. I talk like a non-autistic. I even do the cooking at home, too. It’s a little hard for me to make friends, but I would not judge your son by my yardstick.  

I’m not exactly sure if you have a proper yardstick to measure your son’s abilities by. Nobody really knows the potential a person has, even an autistic one.  

I have a few things for you to consider. 

  1. I believe in vaccines. I believe vaccines did not cause your child’s autism. I don’t know where you stand on this issue. Many people do believe this, though, even many celebrities. This fear has caused many outbreaks of once-eradicated diseases. Be careful who you trust. 
  2. Autistic Adults are not morons. Actually, most autistic adults have a perspective that many parents of autistic children do not consider: the perspective of the autistic person themselves. Who better to help a person with a trait or condition that someone with the same trait or condition who has been down the road a bit? There is a reason certain conditions run in families! 
  3. Be Wary of Applied Behavior Analysis claims. Applied Behavior Analysis – ABA – was formulated to make the autistic child “indistinguishable from their peers,” or to make them seem non-autistic again. The truth is, your child is not a potential non-autistic. They were always autistic. They were born that way. I was born that way. Be careful how ABA is taught to your child. He might be taught how to behave in public, but make the boy non-autistic again? Not going to happen.  
  4. Listen to your child. Every bit of behavior is communication. They may experience the world in a completely different way from you, due to sensory processing issues. Almost all autistics have them. If he starts to stim, then consider the surroundings. Is he uncomfortable?  
  5. Do not be afraid of stimming. Stimming is a comfort behavior. As long as he is not hurting himself or anyone else, self-comfort is a good thing. If his stim is harmful, I would suggest getting a small toy or game to stim with. Any autistic adult can have a suggestion that helps.
  6. Delays in growth are not denials. I was older than five when I finally asked my first question. I was delayed in almost everything social and acceptable throughout my childhood and early adulthood. But keep going. Most of us autistic people are verbal by adulthood. Many of us work jobs.  
  7. When he gets a Special Interest, let him study it. It might be something like buses or trains, or airplanes…it might even drive you and yours crazy. But hang in there. He might be going toward his ultimate career choice in the end, and he’ll possibly outdo others in the field. Is his special interest the airplane? He might be a pilot or mechanic. Is it music? A great musician. You never know.
  8. Be Wary of Autism Speaks and Other Cure Crusaders. The  notion of cure in autistic circles is akin to eradication of autistic people themselves. They see autistic people as a big scourge that must be destroyed. 

This is by no means an exhaustive list. If you have any questions, feel free to contact me. My email is: cambriaj1977@hotmail.com.  

With Warmest Regards,

Cambria Jenkins

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Autism Awareness – Specific Issues

You’ve seen the blue monuments, the store displays, the big rallies. It’s all about the suffering parents! Those poor paaaaarents, dealing with a demon autistic child! But nobody seems to see how it’s affecting the children, or worse, what happens when those children grow up as broken adults that need repair. Sure, most autism parents tend to make the autism suffering all about them. They tend not to look past the end of their noses. But let’s see how we can deal with them now.

  • On Autism “Awareness” Rallies: Don’t go. There is no need to go to a rally where your fear being booed and worse.
  • On Wearing Blue: I’d avoid it, at least for April 2. People might think you support the hateful actions of Autism Speaks. Most autistic people tend to go towards red, gold or taupe for Autism Acceptance. (Personally, I go red, simply because I have it.)
  • On Blue-Lit Monuments: Take those as reminders that we need to fight for Autism Acceptance.
  • On Store Displays: Take these with a grain of salt. Your experience is an expert one.
  • On Those Poor Paaaaarents, Part 1: Ask them this question: “Are you the one who is autistic? Or is it your child?” “Do you think a child has meltdowns on purpose?” “Do you think a person suffers on purpose?”
  • On Those Poor Paaaaarents, Part 2: Remember, they are made by despair-loving doctors who talk about what the child CAN’T do, as if the doctors know. If they are open to it, teach them the truth.
  • On Autism Speaks Dominance: Take it as a reminder that we still need to fight. Remember, they are anti-autistic scaremongers, no matter what they say.
  • On Not “Looking Autistic” or “Seeming Autistic”: Well, bring up the point that AUTISTIC ADULTS DO NOT ACT LIKE AUTISTIC CHILDREN. (Ahem, excuse my yelling.) It’s true. When you talk about delays, bring up the point that Later Does Not Mean Never.
  • On the basic stereotype that “They’ll Never Amount to Anything!!!!!” – Google Famous Autistic People. You’ll be pleasantly surprised. Remember, autistic people can do anything.
  • On Inequality in Autism Access and Treatment: This is intersectionality in a nutshell. The theory is, suffering is compounded the more you deviate from the white male cisgender neurotypical “norm.”

This list of specific issues is by no means an exhaustive one. Please, comment on ones I need to address. I really want to help.

EDIT: Point included in comment about autistic age on 3/25/18.

More Holiday Tips

 

What else can I say about Holiday décor and bustle? Here are a few tips I have picked up along the way: 

  1. Keep It Simple. You may have to avoid things like putting up a tree until they can handle it better, or ever, but keep the decorations simple. I know that by looking at my house, you may not see this tip in place, but it is there. We have picked a simple color scheme and stuck to it.
  2. Tradition, Please. Now, I’m pretty sure that whatever level you have the decorations and bustle at, be sure that all the traditional elements will be noticed. This one is better kept in my arena. All the decorations I have up are tradition – a fancy word for Christmas Routine. We put up the tree, put out the Nativity (we’re Christian), decorate the main areas of the house, and it’s all now routine to me.
  3. Keep. The. Routine. The Christmas Tradition is all a routine you keep, stretched out over a time span of about a month, depending on your holidays. Now, I’m going to talk about routine a little more, because it’s a comfort for us autistic people. The upset routine is upsetting. To us autistic people, it’s like saying sheep have wool, but it somehow seems to get lost on non-autistic people. It’s like a child who has naps about midday not having his midday nap. We get cranky and upset.
  4. Have a Refuge Ready. A refuge from all the hustle and bustle is necessary, and has been advocated as a must by autistic advocates since the early days of Temple Grandin. I’m sure my mother finds it weird that I barely talk while we’re in the car going somewhere, even without music. The thing is, it’s a refuge that is portable. Perhaps we autistic people, or our caretakers, need to seek out a refuge for the person, just in case they need to, say, relax the senses for a while.
  5. Try to Empathize. Yeah, yeah, I know the stereotype. Autistic people aren’t supposed to be able to empathize – that is dead wrong. It’s been my experience that non-autistic people lack the empathy unless they actively practice it. Think about it – imagine you are at a loud concert, in front of a throbbing speaker, and imagine that all the time – you may begin to be able to empathize as to what we go through. I beg of you, try to think of what we go through. We’re trying to communicate it. Listen.  

May the Fourth Be With You

My Star wars fascination started early. That might seem weird considering that I was born after the first movie came out (July 17; the movie came out May 25), but it gripped the nation like no other movie had before. It was unlike anything people had previously seen. I mean, most of the actors involved were absolutely sure it would be a flop, that’s how unprecedented it was. Of course, nobody would give George Lucas his due until after the movie came out. Sometimes, you have to bop somebody on the head before they actually get something sometimes. But, on to me.

When I finally had a good look at the movie, there were some great things that the sci-fi overwhelmed. Let’s see; there’s a princess who aids in her own rescue, a sword fight in which the villain strikes down the hero; an antihero who was kind of sexy (hey, I was a kid!), and robots with personalities. Had anyone done a robot with a personality before? That was amazing. (I’m not sure HAL 3000 counts.)

Of course, there are drawbacks. Let’s start with Stormtroopers that miss their targets; not-great dialogue, and almost completely illogical transport vehicles. (Ever heard of the wheel, Star Wars engineers?)

I’ll admit it; I’m a slight geek. But how could you not be some level of geek when science fiction and fairytale elements collide, and it’s so well done? Yeah, George Lucas seemed a little tone deaf when it comes to relationships, but a little coaching could have improved that. The movie, and subsequent movies to follow, are amazing.

Blogging Against Disablism: My Experience With Disablism

What is my experience with Disablism? First, let me get this straight: Disablism is another word for Ableism. It’s judging a person as “less” because they’ve got some perceived disability for getting along in this world. Let’s keep that in mind.

So I’ve decided to simply relate my experience with Disablism. Let’s start with when Ableism really hit me in the gut: In college, I decided to reveal to my psychology professor that I was autistic, and could be used as a resource. She simply went, “Awwww!” As in, she felt super sorry for me. I told her I was a resource for autism and autistic therapies, if she wanted to use me! She avoided me for the rest of the semester. Not cool, lady. She judged me as less simply because I revealed to her I was autistic. I wonder what she would have said were I in a wheelchair?

Then, there was another incident in which I was judged as being “less.” At the Autism Society of the Bluegrass, they were discussing their autistic kids, and I wanted to join in and give them some insight, and, dare I say it, some hope that their kids would turn out fine if given the right tools. They asked me, “How old is your kid?” I simply told them, “I AM the kid.” They seemed shocked and dismayed. Here is my question for the ASB” Why don’t you unclude autistic adults in your conversations about your children? Do you want your children to be ignored and discounted the same way? Because that is what you are telling the world to do. It’s as if you’re literally saying, “Ignore my moronic child. They are not worth talking to about their own lives.” I am still on their email list, but I am considering leaving the list altogether. I do not like to be discounted.

You Have the Choice: Autism Acceptance (message to our allies; TW: Autism Speaks) — by Never Less Than Everything

“Do you think its strange That there’s a way Of how you look and how you act and how you think Pretend they’re not the same as you.” All My Best Friends Are Metalheads, Less Than Jake I’m dreading next month. A profound dread that surrounds every April. Next month is what most of the […]

via You Have the Choice: Autism Acceptance (message to our allies; TW: Autism Speaks) — Never Less Than Everything

Why I Care

I get it. I am a white woman. In that, I am privileged, to a degree. I am also autistic, but I did not receive the controversial Applied Behavior Analysis therapy, nor did I get other types of “therapy” such as restraint and seclusion. I am also fat. Let’s face it. I am 4’ 11” and a size 20. There are some things which give me a certain amount of privilege, plus a very loving and accepting mother, and a father who loved me the way he could. Now, with all of this going for me, why do I care about the person with skin darker than mine, the person in the wheelchair’s dignity, the fellow autistic who was abused? There are a myriad of reasons why. I am compelled to be concerned about my fellow man and woman, and understand why they might have a degree of mistrust toward me. I get that. As I explore these reasons and troubling, unfair and often untrue stereotypes about this type of person or that type of person, I also get my eyes opened to some pretty stupid and cruel treatment of others by people I am familiar with. For instance, one of my friends a couple of years ago got offended by another woman talking about her and her race as “you people” negatively. I’m not sure if that other woman’s eyes are opened yet, but my eyes definitely are.

It is wrong, and visually comical, to try and set a type of people into a narrow box of behavior. Let me give you an example from my own life. A stereotype of autism is that we are all skinny white men who are proficient in math and cannot grasp intangible subjects, like love and fashion. I have only met one person who could wholly fit the stereotype, and he was not autistic. Besides, my family taught me how to love, and What Not To Wear demystified fashion for me. Let me also tell you something: I am not a skinny man. Have you been reading this? If so, I applaud you. We have a saying among the autistic community: If you’ve met one person with autism, you’ve met one person with autism. I swear, other people think we have a hive behavior or a hive mind or something. We do not all react to everything the same way.

We all are members of different cultures and families; we all, however, have one thing to set us in common: We all have human hearts. We cannot live without our hearts. We have an innate sense of right and wrong as well. Our differences are so many, yet there are so many things we have in common. Besides, those in power love to point out the differences of the oppressed to keep them fighting each other, so they can stay in power. I’ll wax on that another time. Let’s come together among our commonalities so we can help each other and do what’s right. That is why I care about others who are different from me, because those differences are minor in comparison to the fact that we all have human hearts.