Tom RostonIndependent journalist Tom Roston checks in and writes about the world of documentaries in his column, Doc Soup.

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A Neurotypical’s View on Autism Documentaries

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Seen any docs about autism lately? No? Me neither, until recently, and that’s a shame.

Look at it this way — Crises tend to have a primary medium of expression. Social media was a driving information source for the Arab Spring. The first Iraq War was sometimes called “The CNN War.” The AIDS epidemic found voice in ACT UP, the activists who marched, plastered walls, leafleted and shouted from the roof tops.

In fact, if AIDS was just breaking out in the United States now, I bet there’d be a wealth of documentaries coming out every year on the subject, imploring us to pay attention and do something about it. But at the epidemic’s peak, in the 1980s, documentary filmmaking tools of distribution and production were relatively limited.

An image from Refrigerator Mothers (POV 2002). From the 1950’s through the 1970’s the medical establishment mistakenly believed it had found the root cause of autism: poor mothering.

I’d contend that the current autism crisis, and I don’t think I’m overstating that here, could be the first national emergency that gets the full documentary treatment. And we should be watching them. The number of documentaries about autism keeps increasing, unfortunately, for good reason. The number of children diagnosed with autism is going through the roof.

In the early 1980s, about 1 out of 10,000 children was diagnosed with autism. Today, that number has skyrocketed to about 1 in 100, according to the Centers for Disease Control and Prevention. Sure, perhaps you could explain away the spike as a new diagnostic approach by doctors, but that doesn’t dismiss the fact that it’s a big number.

Autism covers a range of neurological conditions that are often associated with a person having difficulty connecting and communicating with others, withdrawal and repetitive movement. The cause of autism is a very sensitive issue, with the medical community generally saying it doesn’t know the source, and a very vocal minority of parents who are saying it’s because of vaccines. There appears to be a genetic root, in fact. There was a study released just last week that verifies this, and there could be environmental causes — increased use of antibiotics or mercury — but it’s still a tragic mystery, in much the same way AIDS was in the 1980s.

This recent scientific finding could be a real game changer. Either way, it’s all happening right now, and so we “neurotypicals,” the term sometimes used by people affected by autism to refer to the rest of us, should be more aware.

April is Autism Awareness month, and that’s what prompted me to face this issue. Despite the number of autism docs that come out each year, I hadn’t seen a one, unless you count POV’s Hold Me Tight, Let Me Go, a documentary about a British school for emotionally disturbed children. Why had I sidestepped the others?

I didn’t think that they were really meant for me. I figured these were niche docs that catered to families affected by autism.

I didn’t want my heart to be broken by something I couldn’t help.

I didn’t want to be put in the unseemly position of watching these children in a voyeuristic fashion.

There’s so much mystery and contention about the cause of autism, I didn’t want to be subjected to documentaries with strident agendas.

In other words, I shut down. If my reaction is at all common, and I think it is, then the symptoms of autism, strangely, coincide with the way the neurotypical public responds to documentaries about autism.

I finally broke through this barrier recently by watching a report by Robert MacNeil, from PBS NewsHour. MacNeil has a grandson who has autism, and the veteran reporter says that this is the first time he’s ever done a story on his own personal life in his 50-year career. I found the segment riveting because MacNeil is a compelling guide to this world.

I have admittedly blind faith in the integrity of MacNeil, and to see him struggling with connecting to his grandson is poignant. And then to watch this kid, Nick, and his mother, Alison, struggling with the symptoms of autism is indeed heartbreaking. But it was also eye opening.

I then watched Autism: The Musical, a 2007 documentary about a teacher and parent of an autistic son, who creates a theater program in Los Angeles for autistic kids. The narrative of the film tells the story of the musical production that the kids put together, but that’s really just the framework to introduce us to several children and their families. The film is a touching depiction of these sweet, endearing children and their complicated parents, who are flawed yet valiant heroes. The moms are especially frank, and I almost felt embarrassed at how deeply the film pries into their lives.

Now, if I encounter someone affected by autism (so far, I only know a couple people peripherally), I will be more sensitive and aware of what they are going through. And knowledge is power, as they say. And only through understanding can we practice true compassion.

But I’ll get off my soapbox and instead leave you with a list of documentaries, many of which you can watch online for free, about autism. Although I can highly recommend Autism: The Musical, I can’t speak to the quality of the following films. I also warn viewers that some of these appear to be of a homespun quality, and could have agendas (as I mention above). If you know more about autism than I do, I welcome your input about these films. Let us know what you think are the best — and why.

A Mother’s Courage: Talking Back to Autism (2009)
As the title suggests, this is the story, narrated by actor Kate Winslet, of a mother of an autistic son, who wrestles with his pessimistic prognosis.

Normal People Scare Me (2006)
This is a collection of first-person accounts by people with autism. It was co-directed by Taylor Cross, a young filmmaker with high functioning autism.

Wretches and Jabberers (2011)
Two men with autism go on a journey to help change the way people think about their disability.

Autism Every Day (2006)
This film, sponsored by the organization Autism Speaks, is a portrayal of the mothers of autistic children. The stresses of parenting an autistic child are beyond what most “neurotypicals” can understand. But we can try.

Refrigerator Mothers (2003)
Refrigerator Mothers, which aired on POV, gets its name from the misdiagnosis of mothers of autistic kids, blaming them for being detached, and cold, parents. Update: Watch the film at snagfilms.com.

Her Name is Sabine (2007)
Sandrine Bonnaire, the fantastic French actor, tells the story of her autistic sister, through home videos and new footage that depicts a once-bright child turned miserable through her condition and questionable treatment.

Loving Lampposts (2010)
Filmmaker Todd Drezner, whose son is autistic, takes on some of the bigger issues surrounding the diagnosis, including the controversial “treatments.” You can watch the film at snagfilms.com.

George (1998)
Another filmmaker, Henry Corra, made this documentary about his son who has high-functioning autism. Corra asks the question about what is normal in a doc that was way ahead of its time.

Beautiful Son (2007)
This documentary confronts the issue of treatment for autism as it portrays a couple’s struggle with their son’s autism, and their frustrations with the medical community.

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Tom Roston
Tom Roston
Tom Roston is a guest columnist for POV's documentary blog. He comes to us as a ten-year veteran of Premiere magazine, where he was a Senior Editor, and where he wrote the column, Notes from the Dream Factory. Tom was born and raised in New York City. He graduated from Brown University and started his career in journalism at The Nation and then Vanity Fair. Tom has also written for The New York Times, The Los Angeles Times, GQ, New York, Elle and other publications. Tom's favorite documentaries are: 1. Koyanisqaatsi - Godfrey Reggio 2. Hoop Dreams - Steve James 3. The Up series - Michael Apted 4. Crumb - Terry Zwigoff 5. Capturing the Friedmans - Andrew Jarecki
  • Futhi
  • Photo-mom

    As the mother of a severely autistic child, I loathe Autism Speaks doc Autism Everyday.  It depicts autism as a horrible tragedy when in fact it isn’t.  Not saying it’s been a walk in the park but they only show the most extreme and the way these parents talk about their children (WITH THEM PRESENT) absolutely disgusts me.  But thanks for spreading awareness and for posting all those docs.

  • csturak

    First, thank you for the piece — sharing that you originally thought these docs weren’t for you but that you now see people with autism differently because of them, is very powerful. I hope that others will follow your example.
    Second, I agree with photo-mom.  “Autism Everyday” is nothing more than fundraising propaganda put together by cynical marketers for a huge non-profit with a questionable mission.  To choose to only show how horrible it is for mothers’ who have children with autism is to ENTIRELY MISS THE POINT.  People with autism are 100% human, just like the rest of us — thus, they are smart, kind, funny, mean, lazy, driven, boring, obnoxious, caring, thinking, emotional, loving, nasty, etc. — and to portray autism as nothing but a burden (and on the *parents,* no less!) is simply disgusting. And, in my experience completely inaccurate, too.
    On the other end of the spectrum, “Autism: The Musical,” is, in my opinion, the most illuminating film about what it means to be a child living with autism, and to be in a family that includes a person with autism.  It’s just great. I can’t recommend it highly enough.
    “Wretches & Jabberers,” along with another enlightening film, “Autism is a World” both feature non-verbal people with autism who communicate through typing — and do so with incredible intellect, joy, and humor. Both are must-sees.  (There is also a shorter film, called, I think, “Autism: We Thought You’d Never Ask” that interviews teens and young adults with autism who share their experiences — it’s also very good.)
    MTV’s “Real Life” series did an episode following young people with autism that’s worth seeing, too. 
    “Refrigerator Mothers” is heartbreaking to watch, but also incredibly enlightening. The best kind of historical documentary — information-packed and enraging.
    Another excellent film about autism and family is “Dad is in Heaven With Nixon,” a film about a middle-aged artist with autism, made by his brother.  As a film, it transcends the “autism documentary” label, and is really a film about family history, the stories we tell, the sacrifices we make — in other words, a film about love.  Highly recommended.
    I’ll stop now. I’m sure there are many more to see. I’m looking forward to hearing others’ suggestions.

    • Lydia

      I agree with the previous commenter. A great piece of journalism. Thankyou. My son and husband both live with Autism to varying degrees, and it is rare to read such an incisive and compassionate article about Autism by an individual without an agenda to advocate for. We all come to such subjects with opinionated baggage, wether we are aware of this or not, so the honesty and insight shown by the author were a happy surprise. I remind my son and husband sometimes, that they are not “wrong, bad, stupid, sick, or disabled”. A society which caters only to one type of human is like an orchestra comprised of one instrument. My son is not the problem. The way in which our communities relate with him is pathological and clearly ignorant.

  • Keri

    As the co-producer of Normal People Scaeing re Me, along with my son, Taylor, who conceived and made the film with supports, I can only say that our only “agenda” was to support Taylor to fulfill his dream to make a film about people with autism, and to show what’s hard and what’s easy about ASD through his lens of experience and that of others on the spectrum.

    I am so proud that despite how hard it was for him to complete the project, his success has helped him to feel confident and to become a powerful self-advocate. He was 15 when he made the film and interviewed 65 people from a first-perspective. Today, at 23, he has traveled the world to share his film, learned important life and social skills along the way, and now lives in independent living supported by the ARC of So. California, and is about to graduate the program. Though he’s been in some college classes these past years, he’s about to take on getting his AA degree with more focus and clarity.

    The point of the film was to share real life in a compassionate way. I think he did a great job, and is a great human being for taking the risk! If you were to go back and see what many of the participants are doing today you’d be impressed. For those who connected personally with their participation in film, they are now doing amazing things in their life. Being the “star” helped many of them to push forward with their own dreams and to fulfill beyond measure. Though some of the participants have had tremendous challenges in the meantime, all are worthy of an ovation for their courage to share.

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