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“The United States of Autism”-A Review

on June 4, 2013

United States of Autism

I saw “ The United States of Autism “ last week and have tried many times since then to sit down to write a review and share my thoughts on the documentary-style film. However, I found myself following the same pattern: write something, read it, decide it doesn’t capture what I am feeling, delete it and start all over again.

Finally, after doing this four times, it started to dawn on me that not being able to figure out and put into words exactly how I felt about the movie was a perfect metaphor for how I feel about autism itself. Just like the movie, I also don’t know what to do with the subject of autism. Autism can be beautiful, chaotic, frustrating, heart-breaking, humorous, maddening, joyous and confusing, all at the same time, just like “The United States of Autism.” With that realization, here are some of my thoughts on the film.

The movie was not short on diversity. Created by Richard Everts with money from a Pepsi Refresh Project grant, ”The United States of Autism” aimed to portray different types of people affected by autism and the different ways they viewed and/or approached autism. Families with different cultures, socio-economic backgrounds, religion, and races were all interviewed.

Many scenes in the film were emotional to the point of being difficult to watch; one in particular involved a Muslim mother whose son was in the hospital with a severe respiratory infection. In the process of her son’s treatments, the mother was asked why she wanted the doctor to save her son, since he is autistic anyway.

Another aspect of “The United States of Autism” that stood out to me was that the parents of children deep in the spectrum hope for a cure. However, the parents of children with High Functioning Autism (HFA) and Asperger’s, and the children themselves, do not wish for a cure but instead want acceptance from society. I was especially happy to see Alex Plank , creator of the on-line autism community Wrong Planet interviewed on the question of a cure for autism. He spoke very simply yet powerfully about how he had no desire to be cured but was also sympathetic and understanding of the family members of those deep in the spectrum.

So many of the parents, especially the mothers, seemed to blame themselves in some way. Whether it was the mom who tearfully and honestly admitted that she sometimes wondered if she did something in her pregnancy that made her child autistic, the parents wondering “what ifs” about their choice to vaccinate or the parents talking about financial worry over paying for therapies, it’s difficult not to self-blame and think you could be doing more as a parent. (Been there.)

One very touching aspect was that the siblings profiled seemed to have nothing but love for their autistic brothers and sisters. One little girl – I believe her name was Daniela – broke my heart when she started crying, telling about how the people at school call her brother “crazy” and how much she doesn’t like them doing that. Then, my tears turned to giggling when a little girl, I think she was 8, talked about how she thought autism was great and the only time it was bad was when her twin sister with autism talked on and on about something and she wants to talk about something else. Her sister’s new favorite topic to talk about? Dictators.

There was some mention of vaccines and their possible relation to autism. Specifically, the parents who run Age of Autism were interviewed about how they believe the autism epidemic is definitely linked to environmental factors. There was also discussion of recovery, although what was meant by “recovery” wasn’t always clearly defined.

I do think “The United States of Autism” did achieve its goal of highlighting how autism affects people from all walks of life. I think sometimes the media can make it appear to be something that is a white, middle class issue and that is just not the case. It was eye opening for me to see the struggles of immigrants who are not only struggling with a language barrier but are also trying to discover a therapy course that will help their child. One family left a very comfortable life in Puerto Rico to move to the states in search of treatment for their son. They have yet to be successful and sometimes wonder if they made the right choice. It’s difficult to watch their struggles and but it’s also easy to be moved by how motivated they are to help their children.

The one thing that I did wonder about “The United States of Autism” was whether it was a film that is ultimately preaching to the choir. I know in my city, it was a special showing and I learned about it through an autism services site. The theater was small and there were a limited number of tickets. Because of this I imagine that most of the viewers were people who already knew something about autism. Is it a film that could do more good if people unfamiliar with the autism spectrum were the ones watching?

I don’t know.

What do you think?

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4 responses to ““The United States of Autism”-A Review

  1. Roger Powell says:

    Great job on your review!! I have not watched this film but hopefully it will air in the near future on Public Broadcast Television. I am the father of an eleven year old boy on the spectrum. I would say Jackson is classically autistic, meaning he communicates with one to four word sentences, stims often, loses his temper quickly, etc. I believe if the intent of the film is to raise funds, then theatrical showings are a good way to go. To increase awareness, broadcasting to the masses would be more effective. Public awareness leads to widespread acceptance…a good thing in my opinion.

  2. Jennica says:

    You really did a great review in capturing how I felt- you made me feel emotional while reading it- I liked your phrase “deep in the spectrum” instead of High Functioning/Low functioning. My son would be considered deep in the spectrum ;0) I explain to people not familiar with autism that he has Autism and intellectual disability. That is the difference. It was awesome when I went to see it because one of the families (the one from Hauppauge) is well known on Long Island for all the work she does helping families through a local ASA chapter. So the movie theater was packed with many familiar faces, families, past teachers that worked with my son years ago- it was like a huge reunion and supporting celebration. But yes, we were preaching to the choir…And I don’t know how many that are not impacted by Autism directly yet, would keep watching…but for me it was a very special night I will never forget. Two other autism moms that I would not have ever met if our children didn’t go to the same EI program in 2001 came with me. We had a great dinner and drinks and so many laughs. We enjoyed seeing our community of amazing families, and cheered when our friends family showed up on the big screen and were so proud of them! The only thing I will say that I left with the confirmation that everyone matters- as I have gotten more involved with disability advocacy over the years- we need to not just raise Autism awareness- it is diversity awareness. The challenges our families face are unique, but so are the challenges of all families of children with disabilities. And yes, thank you for highlighting families that are ethnically diverse and have it twice as hard. It was a real eye opener, as well as the sweet sweet sister- I cried and laughed at those same moments you mentioned! It was a great film. Everyone is making the best choices they can. I do not wish for a “cure” for my sons Autism. I do wish though my son did not have intellectual disability along with his Autism. Like my friend who happens to have Asperger said, “if it wasn’t for some cavemen who was probably on the spectrum that had an obsession with rocks, fire would have never been discovered and everyone would be standing around in their caves talking” lol…

    • cbardmayes says:

      Thanks for commenting, Jennica and I am glad you enjoyed my review. I have always hated the word “functioning” used with either high OR low because the implication, to me, is that there is shock and awe that these kids can do anything “normal.” It just feels wrong to me, you know?

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