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.
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.
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.
Now, I decided to type my answers to the above questions in, because my printer does not work. It hasn’t for months.
I would like to hear of some tips from you guys about caring for oneself during World Autism Month/Day besides the ones I have posted here. Like what to do when confronted by a blue-lit major landmark, for example. Or maybe so-called “Autism Warrior Parents?” What about those displays in grocery stores or places of gathering?
The only thing I can remember is:
Remember, most “autism parents” will have to learn Autism Acceptance the hard way.
I have a problem. There is a dearth of people with autism who like to wear makeup. Sure, some of us autistic people may dislike the look and feel of makeup on their faces, but not me. I love the way my makeup makes me look and feel. Also, once fashion, or more appropriately, style, was demystified for me, I figured out how to use it, too. I like makeup, I like fashion, and I have autism. So why am I nonexistent in the media?
I have a feeling that I am not supposed to be womanly and autistic at the same time. I feel like I am wrong and rebellious when I am in makeup and stylish clothes. That to be autistic, I have to abandon my genuine likes and my being myself in order for people to believe me. I feel weird and like an outsider for being both autistic and girly, or womanly. I also feel this is wrong. So, tell me, media, where are the girly autistics?
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?
It’s almost 2018. While people are looking back, I’m looking forward.I’d rather look forward. It’s a shame that I have very little good to look back on. Congress and the President care little about non-millionaire people. There’s crippling debt. There’s crippling racism. My family will not get back together in the near future. And Judith Newman and Donald Trump put their fingers in their ears and scream “LA LA LA LA LA….” when hearing autistic people, because they do not agree with them.
My main question is: When did willful ignorance become a virtue?