You Don’t Know Me

So, autistic parent who thinks that just because I don’t act EXACTLY like your child, I’m not autistic enough? You don’t know me! Person who thinks I am a dismiss-worthy weirdo? You don’t know me!

You don’t know how intense, loud and colorful I experience the world. You don’t even know how your own child experiences the world. It could be more intense, or maybe it could be less intense. Or, and this is more likely, it may be a combination of both – more intense in some areas, or less intense in other areas.

 You don’t know how much I struggle to come up with the right word. You don’t know how I witness almost every conversation (or interview, in some cases) can go down in flames because I say the wrong word. You don’t know. You don’t know the nights I spent awake agonizing and finally coming up with the right words to say, long after the opportunity to say them is gone.

 You don’t know how I have no emotional memory. You don’t know the hours I spend in private because I am crying over my own pain, or the pain of someone else. You don’t know that I am currently wishing people would just evacuate the Big Island of Hawaii because it seems to be exploding to me.

 Are you psychic? Can you read my mind? Of course not. Maybe if you could, you would be more understanding and accepting of my differences.

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What I Want From Benedict Cumberbatch

So, I’ve noticed that you guys have read a lot of Benedict Cumberbatch on the release of Avengers: Infinity War. And, I must admit, it’s a rare negative light on the star. I’m afraid for him now, for a few reasons.

I’m afraid people think I don’t like him. Nothing could be further from the truth. He’s one of my favorite actors. The reason what he said several years ago hurt so much is because he is one of my favorite actors. I’ve learned, the hard way, not to let a stranger too close to the bone in that instance. In going back and reviewing what I wrote about him, it’s hard to imagine positives without being reminded of them.

I’m afraid people will forget the work he does for charity. He often auctions personal possessions for various charities. For Infinity War, for example, he auctioned off a meeting for tea for an African organization. He often auctions off personal works for organzations as well. I’d just like him to look for something that brings light to Autism Acceptance.

So, what do I want from Benedict Cumberbatch? I want him to turn a little of that charity work towards an organization that practices Autism Acceptance. I want him to see autistic people as people. Many other people refuse to see the autistic as a human being. Maybe I just want him to recognize that ableism can be drilled into you by the media and society so hard, it becomes a part of you. It happened to me, it can happen to him. I guess what I really want is for him to listen, learn, and accept. Is that too much?

Stigmatizing Help: WHY?????

Mariah Carey spoke of first being diagnosed with Bipolar Disorder in 2001. Since she only recently came out of the mental illness closet, I figured she suffered greatly due to the stigma and the secret she held. And it was also true; she admitted to this suffering. Sadly, this is not the only case of suffering due to stigma I can personally account for.
I know a person who came out of the mental illness closet almost immediately after being diagnosed. Unfortunately, she lost a lot of friends along the way. Also, she was blamed for extreme measures being taken to control her by one of those former friends. She suffered through adjustments through medications for a year, and she did it alone.
So, who did she turn to when she needed help for tough financial decisions when undergoing these changes? NOBODY. She and I have large amounts of financial debt and cannot even declare bankruptcy to clear those debts. We are hounded by mail. We are hounded by phone. We are hounded by bad credit scores. And we have no one to turn to in our hour of need. Where is everybody? Everybody we know turned away when we came out of the mental illness closet.
Why do we hate getting help? Why do we discriminate against those with mental illness? Stigmatizing mental illness is only society shooting itself in the foot. Less people seek help, which leads to more hiding, which leads to dramatic confrontations of the jackass-on-a-fast-food-roof kind. Don’t you see? Making help a thing of weakness and vulnerability only makes us weak and vulnerable against the coming drama. We need to stop stigmatizing getting help for your problems. It would have saved years of pain and suffering in Carey’s case.

Getting Jesus; Faith of a Canaanite Woman

I watched “Jesus Christ Superstar” on NBC along with who knows how many people. I suspect there were many, though. Ratings will come out next week. It was a punk-rock-modern retelling, complete with multimedia and reporters among the arresting crowd. I was not offended at all that John Legend was cast. He was excellent. I was actually offended about Alice Cooper’s involvement, until Mr. Cooper’s faith came busting out of the shadows on its own. That put any offense to bed really quick. But one thing that nagged me throughout the show was this question: Did anybody around Jesus really GET Jesus?  

According to the musical, nobody really got Jesus, and they said over and over “He’s just a man.” However, the Bible tells the story of one or woman who actually got Jesus – who He was, what He was all about. Sure, they forgot to depict the Resurrection in the musical. I’m not sure Andrew Lloyd Weber really got Him. As a matter of fact, I have a confession: I don’t even know if I get Jesus half of the time. Fortunately, you don’t have to get Jesus to be loved or saved by Jesus. 

As to the woman who did, they remain unnamed to this day. The first account, in the Bible Book of Matthew (15:21-28), a Canaanite/Syro-Phoenician woman cries for help for her demon-possessed daughter. Jesus says in the account, “It is not right to take the children’s bread and throw it to the dogs.” But the woman counters with, “but even the dogs eat the crumbs that fall from their master’s table.” Jesus healed her daughter for her great faith.  

I’m not saying I am perfect, far from it. I am saying that faith is rewarded, and there was a woman who really GOT Jesus. I want to be more like the Canaanite Woman.  

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.

Motorized Scooter Logistics in a Restaurant

I do not go into the handicapped bathroom stall anymore, unless it’s an emergency and it’s the only one available. The reason is simple: what if my mother needed it? Or somebody else in a wheelchair or motorized scooter? I’ve seen a selfie taken of a girl who used the bathroom with the door open because she uses a wheelchair, with a man WALKING out of the handicapped stall nearby. But, taking care of my mother who uses the motorized scooter to go out to eat, I can’t think of going to a place without considerable disruption. The issue is this: The scooter, when put together, is three feet long by twenty inches wide, by three feet high. We chose a scooter which can be taken apart so we can drive a reasonably sized car and put it in the trunk. Anyway, there is considerable disruption with using a motorized scooter when we go out to eat.  

First, we have to make sure we can get in the door. First, is there a step or a ramp? Then, can we fit in the door? And then the second door? This is not an easy task, especially here in Kentucky, where we can encounter one door, with a small hallway, and a second door, even before we can get into the actual restaurant. What if the second door faces a different direction than the first door? That eliminates most Waffle House locations, and especially our local one, which is the only one less than twenty miles away. I haven’t been to a Waffle House in three years due to logistics complications. We try to get to as many locations as we can, though. We try not to complain. 

Then, there is the seating. We usually have to use a table, which I do not mind, but when they remove a seat for my mom to sit at said table, they usually have to be told to remove a second seat. Do you know how embarrassing it is to ask for what you need, especially when you have people looking around at you with disdain? Sometimes, you have to remove the seats yourself. It’s usually easier that way, though. That way, you don’t feel like you’re being a pain.   

After the seating debacle, we can order food and eat, but then comes the restroom visit. Keep in mind, my mother’s motorized scooter is twenty inches wide. Most restaurant restrooms barely have enough room for her to get to the handicapped restroom, let alone in the stall. And what if the handicapped stall is being used? She has to get off the scooter, with some difficulty, and let it potentially block the other stalls to use a regular stall. As you can see, most of the time, my mother waits until she can get home to use the restroom. 

I try not to complain too much. Sometimes, though, I can see a clear injustice in poor logistics planning, especially around the disabled. Living with somebody that uses a scooter or wheelchair kind of opens your mind.  

Accept and Augment

There is a disconnect between what most people think Autism Acceptance is and what it really is. Most people think Autism Acceptance is letting the person flounder around aimlessly in life and let them waste their time on earth. That is simply not true. You work around autism, not destroy it, not let it rule you. If you could imagine, for a moment, a person that lacks the ability to walk. Do you let them drag themselves around on the street? No! You get them a wheelchair or other walking aid. Accepting autistic people as they are does not mean leaving them to flounder in their pain. It means you teach them how to function in the world obviously not made for them.
I’m not entirely against training the autistic child on how to function in this world. What I am against is the lack of explanation that this is how to function in the world. Explaining that this is how to function kind of sounds like this:
“Cami, this is how most people function in the world. By talking and using words.”
“Cami, I need you to use your words.”
“Cami, that is inappropriate. Please talk about something else.”
(*Cami was my childhood nick name. I might as well put my name in.)
The point is, if the child does not know what you are doing, how are they going to get on board?
I’m also not entirely against the concept of accommodations and adjustments for the autistic, either. Another fallacy in the way society treats the autistic is that they treat it the way they treat mental illness, or any other invisible illness. Would you tell a person with a broken arm or leg that they need to “do better,” or “get out of your funk”? Would you tell someone with the flu they need to try harder to get well? Of course not. Just because a stim makes you uncomfortable does not mean it needs to stop. Does the autistic yell at you to stop talking, for example? No. They know it comforts you to hear your own voice. Why not give that same compassion to them?