Everybody Chill: The Rate is Better Diagnosis

Sorry, but I will not sugarcoat it. I don’t know how. By now, I’m sure you have heard that the new autism prevalence is 1 in 59, up from 1 in 68. And do you know what? I don’t think sugarcoating applies here. If we did not attach a stigma or hate to an autism diagnosis, as American society tends to do to the non-white-bread types, I would not have to warn you.

 Now, let’s get down to your real question: Why? What could be the cause of a higher prevalence than before in the United States? I just put a clue up above. It’s wider screening, especially among children of color. A recent article by the Associated Press cited closing gaps of diagnosis between Black (20% gap – 10% gap) and Hispanic (50% gap – 20% gap) children. It looks like we’re casting wider nets than ever to grab these children and propel them toward a new understanding.

 So, what are we supposed to do with this new information. Well, I’ve got a strange idea: Close your eyes, relax, and see this new rate for what it is: good news on better understanding your kids.

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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.

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.

Searching for Self-Care Help

Now, I’m getting the ramp up into World Autism Month just as much as any autistic person. We’re definitely feared and hated just as much as any other rich, neurotypical cisgender white male*. (*Other conditions apply to be mainstream, too.) I’m not going to discuss how we are ostracized and misrepresented. Any visit to Autism Speaks will give you a good idea of that. All I have to say is that being cured to most of us sounds like Invasion of the Body Snatchers – killing us and taking over our bodies. We scare you, huh? We’re here, we’re autistic, get over it.  

Anyway, what we really need at this point and can get is self-care and mutual care among autistic people. Most of us are broken, traumatized adults. We are cynical, we are twisted, we are bitter. We need to be nurtured back from the brink.  

I have decided that together, we can give more effective self-care advice than any one of us alone. That is why I have decided that we can search for it on sites which cater to our needs, such as Tumblr. Anyway, sometimes we can do better together.  

Just a note here: World Autism Month is an invention of Autism Speaks. April 2nd as World Autism Day is the only UN-sanctioned World Autism Day. Check with your countries on how long “Autism Awareness” has sanctioned in your own country.  

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.  

A Short Ditty about Dr. King

What can I say about the legacy of Martin Luther King Jr.? How he championed nonviolence? How his struggles for the black people and others spurs my own civil rights struggle? (Yes, as an autistic, and a woman, I struggle for love, acceptance and civil rights.) Yes, I can say a lot about Dr. Martin Luther King Jr. And his legacy, but I feel that others can do it much better than I can.  So I will let them.

How Christmas Went This Year

After a day of rest, I have enough energy to talk about how I dealt with Christmas.

I don’t really have any more tips, other than know your autistic relative.

Christmas Eve was basically spending an evening at my cousin’s place for food, family and fun. The funny thing is, it was almost entirely about vegetable casseroles, almost all of which I like very much. Off topic, it’s funny how I have come to like vegetables as an adult, even after thinking I would never like them as a child. Somehow, trying new things and culinary adventure came to include veggies in adulthood. Sometimes, one just needs to bite the bullet and try it. There’s no shortcuts to that one. We also got games, good family talking and even some quiet times, too. It was great. I was disappointed in one factor, though; I wanted to talk to the parents of an autistic relative of mine. He’s a young boy, but I would like to have a talk with his parents, you know, to provide some perspective. But they were not there. I was not exactly going to grill them or provide lectures, but it helps when you’re not alone in a family, as I have so often felt.

Christmas Day was a little different. We invited a couple who had just gotten together, but the man in the two was a friend, so it was alright. Much of the food was on my shoulders, but it was very easy. We had Prime Rib, steamed vegetables, rice pilaf, rolls and a salad, plus cheesecake for dessert. It’s not easy to screw up Prime Rib. Twenty minutes at a high temperature and then 25 minutes per pound. It was done within three hours, resting included. That was the hardest part of the meal. I mean, rice pilaf is very easy from the boxes, and I’ve done rolls many times for Thanksgiving. So, easy meal, good food, good friends, and an overall nice time. It started to get very cold when the day was done, so we had to get them home early. We had a nice time, with blocks of quiet book ending the day. Could not have asked for more.