Archive | October, 2015

This is why no autism story or program will ever be perfect

Julia is a new character on the children's show Photo: Sesame Street

Julia is a new character on the children’s show
Photo: Sesame Street

So the Sesame Street #SeeTheAmazing autism program was launched and shared and talked about like mad and of course, torn to shreds and judged and attacked.

Why? Well, I could go into the details but honestly, the details don’t really matter. This has happened with every program and story ever created and will continue to happen.

No one autism story takes every single perspective into account. They just can’t. Many of the perspectives conflict, making it very difficult to include together and there are just so many that it’s nearly impossible to remember to include them all.

Personally, I’m attacked every single time I talk about how great a person with autism can be, because I’m not talking about how disabling autism can be. Then I write about how disabling autism can be and I’m attacked because I’m not making autism sound like the best gift ever.

This happens every single time.

Cure vs acceptance
Parent vs autistic
Person first vs Identity first
Children vs adults
Independent vs dependent
Verbal vs non-verbal
Boys vs girls
Toxins vs genetics

It really doesn’t matter to whom you are talking or whom you’re talking about or what position you take or how much good you do. None of that matters.

You will be hated for it.

Sesame Street’s program isn’t perfect because I didn’t create it. Even if I did, it would only be perfect for me. Not for everyone else. Lots of people would hate it.

That’s the whole point.

This is why we don’t only have one company doing one program or one person telling one story.

Parents will reach other parents. Autistics will reach other autistics. Somewhere in the middle of it all, we’ll all reach each other. But not everyone will like it.

There’s 2 things we should work on in this regard:

1. Don’t attack each other. Constructive criticism is educational. Hateful attacks create closed minds. Show people how your story is different. I’m sure they’d even appreciate that. Just don’t attack them because their story doesn’t align with yours.

2. Don’t take the criticism personally. Some people are not going to like what you say because it’s not what they wanted you to say. So long as you have something to say, there will always be people who will want you to say what they want said. It’s personal for them, it’s not personal against you. They’re allowed to wish you said what they wanted to hear.

If you are doing good work and making a positive impact and changing lives, keep going. Let other people worry about their own programs and their own stories.

There’s more than enough room for everyone and there is more than enough stories.

That’s where real autism understanding and acceptance comes from.

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A review of the HBO autism documentary: How To Dance In Ohio

How To Dance In Ohio

How To Dance In Ohio

So you’ve watched all the autism movies and documentaries and found that some were hard to watch, others you could relate to quite well and some were even enlightening but I can guarantee that you’ve never seen one as powerful as How To Dance In Ohio.


How To Dance In Ohio is a documentary by Alexandra Shiva that follows a group of young autistic adults as they prepare for their first formal dance. They must learn how to ask each other out, how to handle rejection, how to hold a conversation, how to dance and in some cases… share that first kiss. More specifically the film focuses in on 3 young woman ranging from 16 years old to 22 years old as they navigate family life, moving on from their family and having a job.

Release Date

October 26, 2015 on HBO


You get a sense that this film is going in all the right directions as soon as the film starts when the first scene opens with actual autistic people talking to you and expressing to you how they feel. There are no actors, there is no narrator, there is no big production made about what we’re about to see. There is simply a young woman, with autism, in front of the camera, saying “We like to socialize, but it’s just, we don’t know how,” and from that moment, you know you are watching the right movie.

As the viewer, you get to sort of ride along with this group of autistic young adults over the course of 12 weeks as they prepare for what is quite literally, one of the scariest events possible… a formal dance. I know that most people would chuckle at that or think it’s silly because the average person tends to look forward to social functions like that. This film not only explains but shows you very clearly why it is as scary as it is for those many people with autism. While other films with actors and writers try to create the perfect situation or accurately portray what may happen, How To Dance In Ohio has only very real people in very real situations dealing with them as best they can.

The real strength that How To Dance In Ohio has is it’s ability to capture very real moments as they happen, as though there was no camera there at all. When you see these people cry, or behave in some awkward way or when they laugh, you feel how genuine that is. You suddenly realize what all those other autism films have been missing all along. The actors in autism movies have incredible talent and did great work in their respective films but no one can ever truly understand or convey what it’s like to be autistic quite like an actual autistic can.

It isn’t until you’re watching a documentary like How To Dance In Ohio that it hits you; you will never know what it’s like to be autistic without talking to an autistic.

I fear that the only downfall for this film and any film or book that does such a great job of depicting the struggles (and triumphs) of autism is that those who do not have autism directly affecting their lives won’t give it a chance until they have to. How To Dance In Ohio is such a great documentary but it’s also a very powerful tool for autism awareness, showing people what autism is really like in a way that not many other films have been able to. In one scene, Marideth, a 16 year old young lady with autism is talking with her family at the dinner table and all seems great until she just gets up and walks away. She’s still a part of the conversation and everyone is still happy but she’s just up and gone. To the average person, that would seem odd or maybe even rude. But to an autistic or someone close to someone with autism, we totally understand that!

There are so many key moments in How To Dance In Ohio where I feel that most people wouldn’t even notice but as an adult with autism myself as well as the parent of a child with autism, I find myself feeling this very strong bond between myself and those on the screen in those moments. They’re so tiny and likely insignificant to anyone else but I just know that those already within the autism community are going to pick up on them in the biggest way and go back and watch them again because they touch them so deeply. Powerful moments likes these can’t be scripted nor prepared for, they are real moments that can only happen spontaneously from someone that is living in that moment and Alexandra Shiva captures them so perfectly in How To Dance In Ohio.

As I watched, I messaged friends that are also parents of children with autism, telling them that this is going to be a hard film for some people to watch. I relayed some of the things that the autistics within the film would say, such as “Cartoons don’t judge you like people do,” and we all felt our hearts sink together. We know that feeling.

As hard as How To Dance In Ohio is though, it’s also incredibly wonderful to watch with so many moments of laughter, triumph and of course, tears. None of it scripted, none of it prepared for or anticipated.

If I could make every person on Earth who has no prior experience with autism sit down and watch any one movie to understand what my own life with autism has been like, How To Dance In Ohio would be that film.

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