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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April Wrap-Up: It’s A Little Better

So, another Autism Awareness Month has come and gone. Is everyone OK? I hope so. Although most of the autism Awareness emphasis was toward the beginning, people might want to reminisce toward the types of progress the autistic community has made. I’ve made lists of the Pros and Cons toward this progress. For the first time, there have been definite Pros.

 The Pros:

1. There has been a definite shift toward what autistic people want and need.

2. Autistic voices are finally gaining some sort of traction toward being heard.

3. There has been a rise in finding and diagnosing autism, particularly in communities of color.

4. More female portrayals of autism are coming around in the media.

5. At least in my local grocery store, there has been a shift toward acceptance and social inclusion.

 The Cons:

1. Autism Speaks still wants to “DESTROY AUTISM!!!” as if autism is some sort of social cancer. (It’s not; prejudice is, though.)

2. The portrayals of autism in the media are still generally white and male. This stereotype still rules and harms autistic people everywhere, even denying them diagnosis in females. I have yet to see an autistic woman who is like me on TV.

3. Sheldon Cooper, who does not have an official diagnosis, is the gatekeeper of autism in many neurotypical minds.

4. There has been only one major portrayal of autistic persons of color: Billy the Blue Power Ranger in the Power Rangers Movie of 2017.

5. Most people still think autistic adults are not autistic enough to speak for autistic children.

6. The Autism Community is still fragmented, with parents of the autistic on one side and autistic people on the other.

7. ANDREW WAKEFIELD, JENNY MCCARTHY AND THE VACCINE BLAMERS!

8. The Most Important: People still think autism is a tragedy. Some people even have to wait until adulthood to get diagnosed because their parents do not want their children to be autistic. (Nobody gets a choice in the matter!)

 While the Cons List is almost twice as long, the fact that there are actually Pros is a plus. I previously referenced April as The Trauma Month, if you remember reading that back in March. If we get over our differences, band together and fight the prejudice against us, someday the Pros list will be longer. That, my friends, I am looking forward to.

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.

Stoicism: How Displaying Strength Goes Wrong

CONTENT WARNING: Murder, Suicide, Drug Use 

“Man Up.”  “Be strong!”  “Real men don’t cry.”  

These are common phrases said when a boy, man or even woman or girl perceived to be “strong” is told at a young age. This model of strength, and masculinity in the case of males, is heavily influenced by stoicism. Stoicism is an Ancient Greek school of philosophy that argues displays of emotion are due to lapses in judgment, and true strength and rationality is emotionless. It has made its way into the Model of Masculinity in America. I can’t say if it has made its way into other nations’ Model of Masculinity, though I suspect it has. Some people will admit to murder before admitting to therapy, as most men in America will.  

Modern stoicism is best defined in the basic emotional philosophy of professional wrestling. I have only seen two major emotions defined in the ring, and yes, I watched pro wrestling for years: Rage and Lust. It’s as if any emotion at all that is not rage or lust does not exist. That kind of aggressive stoicism takes a toll on a person, woman or man. Want to know something really weird? Pro wrestling is chock full of early deaths – including one which, if I remember correctly, involved family annihilation. But the man who did that has become a sort of He Who Must Not Be Named. (No, not Voldemort, my dear Harry Potter fans.) 

He Who Must Not Be Named, Chris Benoit, I briefly touched upon. He killed his wife and child. Now, it has been revealed that Benoit had brain injuries consistent with CTE, sustained during his career. I wonder if he knew he was going downhill physically? I wonder if that prompted such an extreme reaction? Unfortunately, I have previous experience in family annihilation. It happened to a friend of mine at church. The theory floating around is that his father did not think anyone could take better care of them than himself. I wonder if it a similar case? 

More examples of Stoicism abound. Many men have died of suicide due to not being able to get help for themselves. I have also heard that the success rate of suicide is four times higher among males than other genders. Also, what does modern stoicism contribute to the usage of alcohol and other drugs to evoke the “proper” state of being? How many people have fallen into addiction due to pressure to Man Up or Be Strong?  

You may think I have no business talking about Toxic Masculinity or Stoicism, but Stoicism has made its way into dealing with female emotions. How many times, when crying, have women and girls been told they are “Hysterical” or “Irrational” and unable to deal with hard issues due to emotion? By the way, “Hysterical” comes from the Ancient Roman word “Hystericus,” meaning “Of the womb.” The very idea that women are too emotional is ingrained in us from the ancient world. How are they prescribed to overcome their womanly emotions? “Woman Up!” “Be Strong!” Stoicism!  

I suspect that emotions may actually be helpful to one, if used correctly. If you’re feeling bad, there may be something wrong. If you’re depressed and putting on a face at a party, something might be wrong. If you’re feeling too good, something also might be wrong.  

I must admit, I was inspired by a segment on Sunday Morning about the toll that modern masculinity takes on young men in our culture…based on recent school shootings, mostly done by young men. We need to remove the stigma and hate of emotion from our national psyche. The Dam of Stoicism will burst eventually, and like any other dam holding back giant walls of water, the ending will not be pretty.

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.

A Tale of Lost Beauty

Enjoy the power and beauty of your youth
oh nevermind;
you will not understand the power and beauty of your youth until they have faded
But trust me, in 20 years you’ll look back at photos of yourself
and recall in a way you can’t grasp now how much possibility lay before
you and how fabulous you really looked…

Read more: Baz Luhrmann – Everybody’s Free (to Wear Sunscreen) Lyrics | MetroLyrics

Take a look at this girl. Isn’t she pretty?  

mypic1-1

The girl had no clue. 

The truth is, this is a picture of me in my teens. At the time, I did not measure up to the skinny beauties of Kate Moss and Cindy Crawford. I was a curvy girl. At the time, it was either ultra-skinny, like Kate Moss, skinny with boobs, like Cindy Crawford, and fat. There were no Kardashians; there were no Ashley Grahams. There were no models to see that I was acceptable, and no way I could be pretty at the time.  

Now I look at the Kardashians, and at Ashley Graham, and I am jealous that I am not younger. I am jealous that I did not have the chance to be pretty just by being myself. 

I’m forty now. Who knows how much potential was wasted because I did not deem myself acceptable? My mother and I live together, and I have little chance of getting out. I have no children. Of course, that is probably my fault. I vowed to have no children because I did not want them to go through the bullying I went through. (I even broke up with a boyfriend due to bullying in younger years.) I guess the bullies won in my life. Maybe I am a cautionary tale. Maybe I am not supposed to have children.  

Maybe I had to actually see my beauty after it had faded to really appreciate it. Sad thing is, maybe if I knew I was pretty, I would have taken better care of myself.