MomHouston.com: Autism In The House

By Leslie Philips

Posted: March 14, 2011

Perhaps the toughest question on the mind of any parent of a child with severe autism is whether their child could be safe and happy living away from home with caregivers who are not family, friends, or legal guardians. People who might, or might not, love them.

Whether you're talking about "institutions" such as Texas' State Supported Living Centers (formally called state schools but renamed because they weren't, in fact, schools), group homes, or boarding schools, I'm referring to situations where your child is living with people who are paid to care for them.

To be blunt, one thing in life is 100 percent certain. We are all going to die someday. No parent wants to think about what will happen to their child when that day comes. For parents of severely autistic children, there is perhaps no more fearful proposition. But there are some situations when living at home with family has become untenable and even dangerous. It's an autism parent's worst nightmare. I've spoken to families in this situation, and those conversations haunt me.

There are a growing number of solutions for people with autism (or any disability) who need significant support as adults. A one-size-fits-all solution doesn't exist, and it shouldn't, because options can and should be individualized. But, we are woefully (even dangerously) unprepared for the tsunami of young adults aging out of schools with nowhere to go.

A new movie, Fly Away, scheduled for limited release in theaters tomorrow, (and release on DVD April 26) explores the gut wrenching decision one mother, Jeanne, (played by Beth Broderick) faces as she struggles with what to do about her teenage daughter with autism. The girl, Mandy (played by actress Ashley Rickards) has violent episodes and horrendous sleep problems as well as other behavior issues, which though less serious, nevertheless are relentless.

In a performance that rivals -- if not eclipses --Dustin Hoffman's portrayal of an autistic savant adult in Rainman, Rickards is so convincing in her role as a girl with autism that even a veteran mom like myself had to Google the name to see if she, in fact, has autism (which she does not).

In most ways, Fly Away is a stunningly accurate account of what it's like to live with a child who is significantly affected. For that reason, I think anyone who doesn't have an appreciation for what that is like should see this film. Too often, people think that most families are dealing with quirky, gifted, highly verbal kids and equate "autistic" with "artistic". This film shows the stark reality for parents of the most affected children, who have few resources, little support from families, friends and faith communities, and are engaged in a never-ending struggle with schools for even basic humane treatment of their children. It touches on so many critical issues, including the terror of having a child who wanders, the judgmental attitudes of the general public, and the isolation parents feel when their lives seem out of control.

Having recommended it, there are nevertheless some aspects of the film that as an "autism mom" bother me.

Some aspects bother me because they are unrealistic. In the film, the public school is trying to convince Jeanne to put her daughter in a residential placement where they can "meet her level of needs". It's implied the school is willing, gladly, to fund this placement. In reality, private placements such as this can cost well over $100,000 a year. Already rare, this "opportunity" (if you want to call it that) will be available to precious few families, especially with so many children now affected.

Second, the residential school is depicted as Nirvana, with a headmaster who is helpful and compassionate, and a teacher who is calm and kind, carefully approaching Mandy with a respect that is all too rare among professionals working with our children. Nobody ever builds residences where people with disabilities are segregated with bad intentions, but realities of high costs, poor pay for caregivers and the stresses of caring for this population cause these "homes" to deteriorate, almost without exception, to warehouses where residents are abused and neglected. I'm not saying there aren't some places that look good right now, but sustainability is a huge problem, and one that must concern you if your child outlives you, which is the usual and natural course of events.

Other aspects of the film bother me because they are tragically realistic. Seeing a young person with severe autism who is living on fruit flavored cereal and milk is horrifying to me on so many levels, and all too common. While Jeanne gets credited for doing such a "great job" parenting her daughter, all that's shown in the film is a public school placement that is working horribly and reliance on psyche meds that clearly aren't controlling the severely maladaptive behaviors. Come on, mom, dig deeper.

In essence, I see this film as a stark illustration of the catastrophic failure of our medical community and government agencies to address the prevention, treatment and care of the most severely affected individuals.

The film is executive produced by Twilight director Catherine Hardwicke, with writer/director Janet Grillo, mother of an affected son, making this her first feature film . Grillo received an Emmy Award as Executive Producer of the documentary Autism: The Musical.

Comments

[Janet Grillo]

Thanks, Leslie, for watching FLY AWAY and for all your support. I really appreciate it.

Over the past few weeks I have had the privilege to share the film with different audiences across the country. And participate in Q+A sessions that often include fellow parents of kids on the Spectrum, who bravely and candidly tell their own stories. There is a tsunami wave hitting our shores, as the 800,000 kids diagnosed with autism age out of the school system into adult living with NOTHING in place for them.

Given this staggering tragedy, your skepticism about the happy outcome for the characters in FLY AWAY is quite understandable. But I assure you that such schools do exist, and school systems will pay for the tuition. My own son attends the extraordinary therapeutic residential boarding school in Connecticut, the Devereux Glenholme School. And LAUSD pays full tuition and board. So it can and does happen. BUT NOT ENOUGH!!!

We need thousands of Glenholmes. And then community living centers for adults, that integrate residents into local neighborhoods and vice versa. My hope was to dramatize this need as clearly and starkly and candidly as possible, to that others will join our advocacy and help create a future for our kids as adults.

Thanks again for blogging about FLY AWAY, and spreading the word.

Best,

Janet Grillo
writer/director/producer

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