'The United States Of Autism' Sugarcoats My Family's Situation
06/12/2013 - 14:04
Rabbi Rebecca Schorr
Rabbi Rebecca Schorr
Rabbi Rebecca Schorr

They say that when you know a child with autism, you know one child with autism. The same could be said about families with autism.

The United States of Autism,” a documentary by Richard Everts, introduces twenty such families. He drove across the country and back again, stopping along the way to explore the varied ways autism affects not just those who have received the diagnosis, but the families as well.

It was clear that I was among my compatriots in the darkened theatre. We all laughed at the same things. Sometimes because they would be funny to anyone, like the eight-year old boy who, as only a rambunctious little super hero could, describes his autism as his “archenemy.” And sometimes because they were funny only to those who walk the same path.

And although I recognized much in the film, I felt a certain disconnect. Because I didn’t see my experience reflected in it.

One parent did mention the overwhelming sense of isolation and guilt. And while a few did admit that if they had the option they would take away their child’s autism, it seemed as though the majority saw it as a gift. Either autism or their child (or children) had made them a better person. Another parent saw her life as just a different. Not bad, just different.

For a long while, I told myself that I’m just not at that place yet. That with enough prayer I would come to see Ben’s autism as a gift. That once I got everything into place – his therapies, appointments, schedules – that I could credit Ben’s autism as making me a better mother, a better rabbi, a better person.

Watching these other parents in “The United States of Autism” made me remember that dream. That I, too, with enough faith or devotion, could come to see Ben as a pure soul whose autism is a positive thing. Except that I no longer believe that. And I know that I am not alone. I wanted to see other parents in the film articulate similar feelings.

Where was the anger? The resentment?  Not just of parents but of the brothers and the sisters? The siblings that Everts interviewed seemed to accept their situation with no complaints. That has not been my experience. My own children – Ben’s siblings – love their brother. But it is a complicated love and they freely talk about the challenges they face as a result of Ben’s autism. To exclude those emotions disregards the burdens and pain of kids who have a kid with a sibling on the spectrum.

Watching “The United States of Autism” made me feel invalidated. I only have one child on the spectrum; some of the families profiled had two and even three. And my son is completely verbal and doesn’t have any other diagnoses. Some of these other parents will never hear their kids say “I love you.” Others have watched their child experience 200 seizures in one day. So what right do I have to feel worn down? Resentful? Helpless?

I left the film wishing that it had done more than scratch the surface. That Richard Everts had pushed his subjects harder in order to give a fuller and more complete picture of how autism can and does affect the entire family. Maybe then, no one would walk out wondering if her feelings were legitimate.

Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr

 

Comments

Rabbi Schorr I appreciate your review thoughts and feelings. I had a few of the same reactions. I have the honor and privilege of being involved in the film at many levels. There was more than 13 hours filmed of my family alone. I know one of the objectives was to make a piece that could be shown to the widest audience and figure out and define what this thing called "Autism" is. Many still use the benchmark of "Rain Man"to define autism. I would love to work with you to make the "R" or "X" rated version of our lives but I doubt it would be viewed by more than you and I. As "They" say The General public can not handle the truth.

Oh the irony of people making mean, bitter, personal comments in the name of calling someone's honest and thoughtful reaction of the film "bitter."

I am so glad you wrote this piece, and the 'naysayers' in the comments only prove a sad point: many only want to hear positivity. But as you note, that is an incomplete and therefore somewhat disingenuous picture of the reality the film aspires to portray. I value your honesty, which comes at the price of bravery and putting yourself out there. It's a price I'm glad you are willing to pay and feel that we all benefit from it.

As a parent of two children with autism, this is a sad commentary to read.
Autism presents a chellenge to the "self" ... to see the world not from our self-oriented vantage point.
It is, in a way, the becoming of the "other" in society. Surely, this is not for the faint of heart.
The essence of being the "other," however, is to gain a level of awareness and of the world that can only come from being the outsider -- the unwelcome one -- not unlike the Jewish nation in our tradition; and yet
it is this status that gives one incrdible insight and understanding (if one is open to it.)

Richard,

Thanks so much for reading my piece and taking the time to explore the points that I raised.

Each one of us sees the world through our own unique lens. I thought that you clearly wanted to show a wide range of situations and you certainly did that. Because of my experience with our son, Ben, I kept wondering how the different sibs felt. Most especially, the sister of the young man who was institutionalized. On that particular note, I was unsatisfied. Again, it is because I see the anger and resentment of our younger kids that makes this specific issue one of particular concern to me.

This was in no way a review of the film; rather, it is an essay about my own experience watching it. What you have created is something wonderful and that I hope will be of educational value to many.

Again, I am honored that you read my article and shared your thoughts.

Sorry that you felt 'invalidated' because of feeling like your 'side' of things aren't a focal point. I would like to challenge your perception by reminding you of the following:

a) you can't make anyone feel anything. Your reaction to stimuli is based on your beliefs. If you feel inadequate, you are thus making yourself feel inadequate.
b) You must have missed the family that moved from PR who left EVERYTHING behind to give their child a better chance even though they lost good jobs in the process, their home, and they had two other typical children who miss their home.
c) They must have missed the other immigrant family whose child was having hundreds of seizures a day.
d) There is a child who calls autism his arch-enemy
e) a dad expresses his frustration with the system
f) a single mom says it like it is with regards to her former spouse not understanding that their child needed them.
g) a mom talks about how she still struggles with feeling like she is responsible for her child's autism
h) another mom breaks down in tears because other people don't see her child's strengths and she had to home school him for a while.
i) a dad expresses frustration about not being able to give child what he needs and about how many times siblings get ignored.
j) a mom talks about how medical professionals said she should just let her boy die cause he is autistic anyway and has people calling her son a terrorist (yup that one for sure highlights how it is a party)
k) mom cries and sibling cries because of all the challenges. sibling even says hard for her at old school cause her friends would call her brother crazy.
l) must have missed my husband's rant about our government
j) there is an older couple who had to put their son in an institution because of his aggression and just not being able to give him what he needs anymore
k) a mom talks about having 3 boys on varying degrees of spectrum and at one point wondering if she would ever hear any of them call her mommy
l) mom struggles trying to get her daughter a diagnosis because girls are often looked at differently

My husband walks away being happier and more accepting of our son--which perhaps is where you felt disconnected. That his response and yours are different is perhaps a good thing and a reality. At no point does he tell you how to feel as a viewer. It is left to the viewer to come out with an opinion. I would say as the parent of a profoundly affected son, that there were ample examples of that feeling you were looking for yet for some reason you are choosing to focus on perhaps 3 stories where parents actually called their child a gift. That my friend, is a choice on your part and perhaps something that I would challenge you with in the future is to explore why you felt like it was a judgment on you. Take care and be good to yourself.

Thanks so much for taking the time to read my piece and share your thoughts.

I did actually reference several of those points in my article. And the ones that I didn't mention did not speak to my particular point. Yes, each family shared the difficulties of their particular situation. And while there were tears, no one talked about the anger or resentment that is often experienced.

Again, I appreciate your response.

Again, thanks for

I would respectfully say that no one can make you feel anything. We create our own feelings of inadequacy. The film was supposed to just give families across the country a way to describe their families situations. Many spoke about seizures; believing that their children were harmed; a boy spoke about autism being his arch-enemy; a child cried because her friends thought her little brother was crazy etc... Also you must have missed the family whose son is in an institution because of his aggression--the one tied by hands and feet in shackles.

There were plenty of examples of people being real and crying including moms who believed they some how caused their child to be autistic and one mom and grandma breaking down because they thought they would never hear their children call her mommy.

Maybe a way to achieve whatever it is you are looking for is to not compare yourself to the families in the film but maybe go away with some lesson from it that could help you in your day to day life. Your review of the film seems unfair and over-simplistic perhaps to validate the feeling that you came away with. There isn't a problem with feeling angry and isolated. As a parent of a profoundly affected child, I can relate but I most definitely didn't feel like that point of view wasn't amply referenced. Not sure if perhaps you were expecting families to curse and throw things, but aside from that the emotion you are talking about was often shown throughout.

Yes, I mentioned several of those examples in my piece. Which was less a review and more my impressions of the documentary, by the way. There was certainly crying and sorrow portrayed by many of the families. But what I felt was missing were the feelings of anger, frustration, and resentment that often accompanies the sadness. I had, in particular, wanted to know how the sister, whose brother was institutionalized, felt growing up in a home with such an aggressive sibling. Talking about all the feelings is important to the brothers and sisters who will, invariably, see this film.

I truly appreciate you comments.

Or maybe you could take a lesson from the way these families are handling what life has given then. Maybe not everything is meant to validate your feelings. Maybe if you didn't struggle so much with hating autism and feeling bitter with what it has taken from you, you and your neurotypical children - and perhaps most importantly, your autistic child - could be happier.

Comment Guidelines

The Jewish Week feels comments create a valuable conversation and wants to feature your thoughts on our website. To make everyone feel welcome, we won't publish comments that are profane, irrelevant, promotional or make personal attacks.

Add comment

The content of this field is kept private and will not be shown publicly.
By submitting this form, you accept the Mollom privacy policy.