Living the ‘lie’

Great article.
SIDE NOTE: At one point, I did not even know who I was outside of how others acted.

the silent wave

I’ve written a lot before about acting and masking.  For the cheap seats, it’s a prevalent theme throughout the Asperger’s/autism spectrum community.

The way I see it, “masking” is the idea of putting on a proverbial mask, one that covers up your true personality, your true self, etc.  In essence, hiding who you truly are.  “Acting”, on the other hand, is related, but different; one either adopts the characteristics or even persona of another, or perhaps constructs a new persona altogether.

I’ve acted and masked all my life, from my second year of kindergarten onward (yep, you read that right; I spent two years in kindergarten.  Long story.  Not due to intellectual or cognitive impairment).  Acting and masking are survival traits of sorts for me.  I couldn’t have “functioned” in this world without them.  Masks and acting roles construct a hologram of me that is deemed acceptable by my peers.

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The Problem with the OWN Show “For Peete’s Sake” – by The Silent Wave

I had a meltdown after watching one episode of this show. This article vocalizes the troubles I have with the issues regarding the show’s position on autism.

So anyway, the Oprah Winfrey Network (available on most cable/satellite TV lineups, at least here in the US) has a reality show. It sheds light on the lives of a family that includes an autistic boy, aged 18, who was diagnosed as autistic at age three. Generally speaking, it’s a step in a positive direction […]

via The problem with the OWN channel’s ‘For Peete’s Sake’ reality show — the silent wave

Wrong Model, Wrong Research

Bravo! I am disappointed by MIT.

Eclectic Autistic

I was going to write a long, detailed post directed at MIT about their announcement of a new Center for Autism Research, which will be focused on lifting the “burden” of autism and developing “methods to better detect and potentially prevent autism spectrum disorders entirely.”

I was going to talk about how, scientifically, any approach to a complex problem requires using the correct model, and explain that I think they’re using the wrong model of autism — a pathology model rather than a neurodiversity model. I was going to pull quotes from articles about this new center (as well as the existing autism research going on at MIT, which is already along the same lines) and contrast them with quotes from MIT’s president about inclusion and respect for students of all backgrounds.

But I’m just tired of it all.

I understand that our whole society pathologizes difference: there are…

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Ways to Get Through April and Other Tough Times

I can promise you that you will have tough times. But what I can also promise you is that you can get through it. As I have said before, April is a tough time for adult autistics, especially around April 2. The trouble is, Autism Speaks hijacked the conversation about autism, and with its generally negative tone, many autistic people are vilified and pitied to a certain extent. As you can see, it is a tough time for us. We have to work extra hard to get ourselves through this month.

I’m not a doctor. I’m just an autistic wanting to help other autistics.

1) Acknowledge your feelings – and FEEL them

I’m sure you might have begun this particular technique if you are here. I’m not going to give you a platitude, I’m just saying that acknowledging what you feel is the beginning of getting through things.

2) Find someone to talk it out with that you trust

“That you trust” is critical. You need a safe space to talk about what you’re going through. For some people, it might be a fellow autistic on the other side of the planet – and that’s okay.

3) Practice Self-Care

You need to take care of yourself to fill up your particular spoons of limited resources. I have said before that self-care is not always luxurious and pretty; sometimes, it is choking down large amounts of pills up to several times a day. Need I say more?

4) Stim, stim, stim

That’s right; I’m going against all Applied Behavior Analysis training and saying that you could need a stim. It’s a comfort, and may even be a form of self-care. The only stims you need to avoid are ones that, obviously, injure you or others. If you need to find a stim idea, Tumblr has a blog called “stimmysuggestion” that has many ideas. My own stim is moving around; I can easily work that into public life. I am no hater of stimming; just find one that suits you.

5) Go crazy so you don’t go crazy

This was the entire point of MASH, a TV comedy in the 1970s-80s that centered around doctors in a medical unit during the Korean War. If you need to act WAY out of turn, go ahead and do it. Comedy and other forms of silliness are welcome in the self-care category of psychology. Go play on something (but make sure it can hold you). See a kid’s movie, even if you need to grab a niece or nephew to go see it. Play with a toy.

6) Try to See Past the Hardship – Consider that it’s only during one month, and drops off greatly after April 2

Also, remember that June 18 is Autistic Pride Day. I’m just saying.

7) Let Go of those Autism Marbleheads

Marble is a dense stone. Dense, hard and continues to be itself. Sounds like the anti-vaccine camp, huh? It often takes a dramatic, usually harmful event to get through to those who stubbornly hold onto false beliefs about autism. You can’t change a mind unless it wants to change.

8) Ask for help

There is nothing wrong with getting help. Considering the apparent stigma surrounding help, asking for it is a sign of strength. You are not Superman. You do not have to be.

9) Bonding with Other Autistics is Good For You

One of the things about finding your “tribe,” if you will, is that it feels good to know someone who understands you. That’s why so many of the actually autistic forums do so well. Besides, if you’re an eagle, wouldn’t you rather learn how to fly from other eagles?

10) Remember, everyone heals and deals differently

Again, if you’ve met one person with autism, you’ve met one person with autism. Everyone needs their own specific combination of mindfulness, bonding, and even help to get through this tough time.

11) Think, Then Take Action if You Can

This is probably what this particular post is doing. Sometimes you need to just see what action you can actually take, and go with it. I say see what you can do first, because it could be wrong, like a bad movie. Thinking and then doing something is the best course of action. Perhaps other autistics can guide you.

12) Religion or Spirituality Helps

It helps to be part of something bigger than just yourself. This might help you remember that you’re not alone as well.

*****

This is not an exhaustive list. It’s just a few ways to get through upcoming tough times, using the actually autistic person’s relationship with Autism “Awareness” Month as a background.

April: Autistic Month of Negativity 

Can I be honest? I am starting to dread April. That normally does not make sense to me. Easter mostly happens in April. Spring hits its stride in April. The Northern Hemisphere wakes up in April. So, what is making me feel this way about April? Oh, I have the answer. April is Autism Awareness Month, and April 2 is World Autism Day. 

Unfortunately, to most Autistic Adults, the trouble with Awareness, is the trouble with hate. Autism Awareness, in its current form, harbors negativity toward the autistic children and adults. The current form of Autism Awareness is ableist.  

Now, don’t tune me out yet. We need to unpack that last statement. But let’s unpack it back to front. We need to define ableism. Ableism is, according to various sources, prejudice and discrimination against those who are disabled. At least we can agree on this, I hope. It’s like racism, sexism, or any other form of prejudice you can think of. Simply put, it’s hating people who are disabled. I don’t want to hate anybody. Trouble is, I feel hated, especially when I am called a “moron,” “retard,” “freak” or, get this, when “autistic” is used to put someone down. It gives the message that it’s wrong to be autistic. 

Why is it wrong to be autistic? It comes down to the question, why are there autistic people at all? Why are there different kinds of people? These are fundamental questions that would take more than a simple post to answer. But since we autistic are here, there must be a purpose for us. There must be a purpose for everyone on this planet, even if it is to teach compassion. So, why must any one condition be wrong, especially if we do not know the reason for its existence? 

So, what can we do with autism? Can we cure it? No. Science is increasingly saying there is no cure for it. When you have autism, you have it for life. So, the only thing we can do is accept autistic people for who and what they are – autistic people. People who need certain accommodations for dealing with a world not made for them. Would it be right to deny a person in a wheelchair a ramp to use? Or yet, deny a little person a cart so they don’t overexert themselves trying to keep up with you? Would you trip a blind man? Yet, when you deny an autistic person their acceptance and reasonable accommodation, that is like tripping a blind man. I hate to use the metaphor, but it’s accurate.  

So, why are people not accepting autistic people for who they are? It is partly due to the current form of Autism Awareness. The current form of Autism Awareness is one of turning autism into a sad state of affairs. Turning it into a disease to cure, to get rid of, is their only known way. But what if it is the wrong way? What if acceptance is the right way?  

 

So Julia is Making the Leap to TV Sesame Street…. 

….but not until next month. Perhaps us autistic adults can give some insights and gentle correction to upcoming mistakes I’m sure Sesame Street will make with Julia.

If you don’t know, Julia is an autistic Muppet being introduced to Sesame Street. So far, that is her major trait. Hopefully, her autism will not separate her too much from the other characters. It seems to look promising, since they are reportedly welcoming her into the fold. I’m a little concerned, though, on how Julia will be portrayed. Will her autism be her defining trait, as it often is of many shows’ neurotypical writing? Will she be looked on as less in neurotypical eyes?

The best-case scenario is as regular people who are just a little different. Let her participate in adventures. Let her experience life in groups. Give her some interests. Have her appear often and  Flesh out her character. Autism is not the only thing unique about Julia, if you do it right.

There are many well-intentioned disabled or neurodivergent characters who fall flat, and even a few in unexpected places who would actually do well in reality. Of course, I think the key to a good portrayal in neurodiversity or disability (which are often treated the same by a conformist society) is a good dose of reality, inclusion and fleshing out. So many autistic characters are stymied by stereotypes that it really is tragic that one must fit this stereotype to even get an autism diagnosis. I prefer that Julia be a recurring character, at least, so she could have some time to flesh out. Good characters get time to flesh out over a series, but most characters with differing traits rarely get anything beyond their introduction and defining trait. Hopefully, we can see a development over time.

What I am trying to say is, please, don’t make Julia a one-shot. Make her a realistic child. Listen to us autistic adults. We can give you some insight.