Autism, Choice and the Book & Film, "Life, Animated"

Frankly, I was surprised to be asked to introduce the Academy Award-nominated film, Life, Animated , for an autism benefit recently.

I have a history with Ron Suskind s book and, by extension, the film, and it's a little bit, as they say, "complicated."

But I appreciated the chance to clear up a few things.

By the way, everything that follows is based on my own experiences, our own life, our own points of view, and our own twenty-three year old, severely autistic son, Ben .

I am not speaking for anybody else. It may sound weird that I feel the need to state the obvious. Why I do should be clear by the end.

(And I also should mention that this is not a review of Life Animated, and there won't be any "spoilers." I already did a full review of the book for the Chicago Tribune -- click here .)

But first off, I love this movie.

I love this guy, Owen, the star of the show.

And Ive liked the book ever since I reviewed it , back in 2014.

This was my opening:

Ron Suskind's Life, Animated is an extraordinary saga of an exceptional boy, from a remarkable family, and their compelling journey through autism.

And I feel the same way about the film.

But in the next paragraph, I said:

Those looking for a smart, well-written, deeply moving, up-from-the-depths inspirational tale with a positive ending should love it. Families with autism might have more divided reactions.

My feelings haven't changed.

Its why I want to focus on autism being a Spectrum Disorder . It is one big reason why reactions to this book might be divided, because reactions to autism itself have become divided.

And sadly, within the autism community, often divisive.

Autism is a spectrum so wide, even referring to it as a disorder, let alone a disability, rankles some who see it only as a difference.

On the spectrum, that is the violet end.

Im referring to the visible light spectrum.

Remember from our school days? It starts with red, and moves through orange, yellow, green, blue, indigo, and violet. Good ol' Roy G. Biv.

Ben is on the red end. For him, autism is absolutely, unequivocally, a devastating disorder, and a deep disability. Id say ask Ben himself, but hed have no clue what you were asking.

Autism has destroyed so much for him, and in return, has given him nothing.

Not one moment of his life, has Ben been able to be alone.

He has always needed someone either present in the room, or no further than a nearby room, or practically right next to him if he's out in public.

When Ben was diagnosed, more than two decades ago, thats what autism meant. A severe disorder.

What a difference a generation can make.

Changes in diagnosis, classification and nomenclature have unfortunately too often divided the diverse bunch that makes up our current autism population, and our families.

We can't even agree on what terms to use.

For us, Ben's red kind is severe autism. Trust me, he doesn't care about the term.

He'd probably prefer the word, "Cupcake."

For those on the violet side, some like High Functioning Autism, some despise High Functioning Autism.

Some prefer Asperger's Syndrome, others don't even consider Asperger's to be autism anymore.

Some prefer the term Neurodiverse, or break it down into various degrees of capacity, but that's too cumbersome for comparing and contrasting Ben to somebody like Owen when I only had twenty minutes to speak.

Many just go with Autism, and others get annoyed at being referred to as anything beyond their own names.

I could have just stuck with red and violet, but then people wouldve had to keep straight which is which, and Id find that annoying if I were out there listening to me.

But I had to pick something, so I just went with severe autism and high-functioning autism, with no offense meant to anybody.

Seriously, such divisions have created real headaches. Some justifiably feel stigmatized by the idea that they have a problem, seeking to be understood and accepted, not considered disordered or disabled.

For us, we are deeply concerned by social and political movements that would harm our beloved and vulnerable son.

These trends are being driven, to some extent, by the High Functioning autism community, who help call the shots and define what our guys and gals need.

But actually, many high functioning autistic people have had no more direct experience with Ben and his cohorts than the average non-autistic person, a.k.a. neurotypicals, a generally agreed-upon term for what I am.

And on the flip side: Many of us grappling with severe autism have little idea of the big challenges the high functioning crowd deals with.

It's all disheartening.

Instead of banding together to address the very real concerns of both ends, and everybody in between, we are all weakened by our dissension.

Whats right for Ben would not be right for Temple Grandin. Or for Owen Suskind.

Ben will almost certainly never be able to live independently. Even if somehow he could, life for Ben on his own in an apartment would be a lonely, isolating existence.

Life in Bens group home might be a rotten place for Owen.

Its perfect for Ben.

Thats what a spectrum represents a wide range of colors and hues, of wants and needs.

Our position is a simple one.

Choice.

Whatever works best for an individual is what that individual should have, as decided by them, or if necessary, those who must choose for them.

Its not surprising to me, though, that this schism has formed.

For one thing, all of us, from red to violet, are passionate about this topic, because it is central to our lives.

But by definition, those with autism, severe or high functioning, can have difficulty seeing the world through the eyes of others. It's that whole Theory of Mind thing.

Simply stated, it refers to the notion that many autistic individuals do not understand that other people have their own plans, thoughts, and points of view. Furthermore, it appears that they have difficulty understanding other people's beliefs, attitudes, and emotions [Stephen M. Edelson, Ph.D., Autism Research Institute ].

This can have an impact on well-meaning people thinking that, if something is right for them, and they have autism, and Ben has autism, its right for Ben, and if something like a group home or campus-based community would feel like a prison camp to them, than that should be abolished to save Ben from such a fate.

Then you have our end, dealing with the difficulties and often exhausting realities of Bens life, and the world we have been trying to arrange for him.

And exhausting is the right word. Many of us can barely get through the day and have the time, energy or money left over to advocate for what our sons and daughters need now.

And, even more critically, what they will need down the road, when our mortality is slapping us in the face.

We confront the other side with a mixture of depression, and with disbelief that we are being told that we dont know what our loved ones need.

But we are in a diminished position We are not autistic ourselves, and our advocacy can lack the punch of self-advocates.

This cant go on.

Im by no means saying Ive been guiltless in my own myopia.

When these issues were emerging as Ben was growing, it took me a while to grasp them, and I would often feel envious of the higher functioning crowd.

They seemed almost lucky. They could talk and be understood; express themselves where Ben could not; do things for themselves Ben may never be able to do; and in some cases, excel at things that would mean theyd have an independent life. Or at least much more independent than Bens.

How sick is that? I was actually envious of others struggling with autism.

Not anymore. Not by a long shot.

Part of my own evolution has come from my wife, Karen, working for the special needs attorney we hired years ago to help us get what we needed from our school district. Soon after Ben went into his first residential setting in 2006, her assistant retired, and she offered Karen the job.

It brought her into contact with the entire spectrum in a much deeper and more comprehensive way than most people, including many in the autism community.

It helped me see just how challenging our world can be for everyone across the spectrum.

I now recognize the heartbreaks of many families like Owen's. It might be different heartbreaks, but no less acute.

In one way, Ben has an advantage over Owen.

If you are around Ben for three seconds, you know whats what.

In restaurants and other public places, Karen frequently gives a one line apology to the room that includes a brief explanation, lighthearted and smiling, to those staring at our often loud Ben.

People usually stop staring, and many smile, and some nod knowingly. Often we'll hear, Oh yes, we have a son, or a nephew, brother, daughter, friend, with autism.

One of our nicknames for Ben is Pavarotti. He sings. A lot.

His songs are usually fragments of favorites from videos, done in his own way, often unrecognizable to the untrained ear. Or even to us.

Arrr-Purr, Arrr-Purr, Arrr-Purr, is his sung version of the cartoon characters name, Arthur, a name he does pronounce correctly when he just speaks it.

Rng rng rng cm dn dn dn is, The rain rain rain came down down down, from Winnie the Pooh and the Blustery Day.

And Ah Weeee, Ah Weeeee, Ah Weeeeeeee-T! Thats another favorite, and we have no idea where that one came from, or what it means.

They are always delivered in the range between forte and fortissimo. In other words loud, and louder. He belts it out anywhere and everywhere.

Five Guys Burgers, a public bathroom, an elevator, an art museum, a doctors office, a waiting room, a store, wherever and whenever inspiration strikes. It always brings eyeballs our way, their owners usually startled.

Especially little kids, whom Ive told, many times, Hes very loud, but very friendly. They still tend to cling to their mothers legs if theyre stuck in an elevator with a yodeling Ben.

But, theyll grow up aware. Ben is very educational. A one man Autism Awareness campaign.

Ben has huge issues with communication. A few words might be used functionally, rarely a complete sentence. For many things, what he wants or needs must be sleuthed out.

Ironically, his behaviors and physical presence means he is much less likely to be misunderstood than someone like Owen.

Hes less likely to wind up in trouble. Or vulnerable to others, like Owen has been. Or arrested, something Karen sees in the law practice.

He also seems to be unaware of his own situation. Unaware of what he is missing. Unaware of the unfairness of it all.

People like Ben simply are less visible than people like Owen.

Its unlikely Ben will ever be in a job dealing with the public.

When he is out and about, he wont seek interaction, unless he mistakes you for somebody he knows. Then, as has happened many times, our six foot two inch young man will back up into you and say, On my back please.

That is his way of requesting deep pressure. In other words, he wants you to wrap your arms around him, and bear-hug him, and lift him up off his feet, and keep him there for as long as possible.

One thing that amazes me about many of his aides, who are young women and much smaller than he is, is that they manage to do just that. The older I get, the more amazed I get, and the more my own back aches after a Ben visit.

Im sorry, he thinks he knows you, is my stock apology, as if that explains anything. Strangers are left wondering just what the heck THAT was all about.

So Ben needs, and always will, a vast degree of help for his happiness. And safety. And fulfillment.

But so does Owen. Its a different type of assistance, but no less critical.

What is heartbreaking for both of them, and the majority out there like Ben and like Owen, is that our world just aint ready.

It is why we must respect and focus on their individual needs -- not on others opinions about their needs -- and broaden the accepted range of the people defining those needs.

I now see both sides better than before, but thats probably not an accident.

I dont mean because of Karens job, or my own broadened experience with the whole spectrum, though that's all part of it.

Its because of my professional life.

Im a psychologist, but most of my work has been non-traditional, not the typical life of a shrink.

For thirty years, Ive been with the Chicago court systems Family Mediation Services, twenty four of them as director.

We do several things, but our main task is to mediate parents who are fighting in court over their kids.

Talk about conflict?

A long-time judge once told me that in criminal court, you see bad people on their best behavior.

In family court, you see decent people driven to horrible behavior.

My late father, a newspaper columnist , spent some of his early years as a reporter covering the courts. He also warned me that the most dangerous courtrooms werent in the criminal division, but domestic relations.

He was right. It remains the only courtroom in Chicago that has seen a judge shot dead on the bench by an enraged father.

It makes our conflicts in autism seem like a vicious round of badminton.

Family mediators try to build bridges between battling parents, to try and keep their young, innocent bystanders from becoming human shrapnel.

All of us need to do the same for our beloved ones with autism.

One advantage we have is that our conflict, though as emotionally-charged, at least isnt driven by so many extraneous factors, like marital infidelity, for just one example.

We are all driven by the best of intentions, for our loved ones, or ourselves if we have autism and can self-advocate.

Or for others we see as like us, even if our actions can be fueled in part by a short supply of awareness, or mountains of misunderstanding.

What we seek in resolving divorce disputes is the idea of a Win Win.

Usually in a win win, nobody gets everything they want, but everybody gets what they need.

In the case of the autism spectrum, the needs are vast and can be vastly different. One regulation, one law, one approach, one philosophy, one size does not fit all.

Far from it.

But one of the few parts that does fit all are the costs.

Funding for services is a small fraction of what is needed for even minimal, humane standards. Standards that come down to basic civil rights.

They require economic capital, political capital, intellectual capital, and social capital.

They also require what I think of as empathy capital.

As some in my family have said at various times and having married into the tribe, I'm the lone goy of a Jewish family most people cant see past their own tucheses.

Thats sure not just a Jewish thing, or a gentile thing, but a human thing. Its natural. Evolutionary, even. Its one of the inbred ingredients for survival.

But it can also diminish us.

We can't empathize if we arent able to see beyond our own, uh, noses.

And that, for me, is probably the greatest thing Owen Suskind and his family have given us with Life, Animated.

It opens a window for us to see one familys mountain and how they are climbing it. It is a life-long, multi-generational climb, with plateaus and deep valleys interrupting the desired smooth ascent.

While watching this film, I believe every single person with an intimate connection to autism has moments when they think, Oh my, thats us. Many eyes water.

Some, as did I, might also have opposite moments, where they think, Thank goodness we didnt have to deal with that. Or, My gosh, they dont have to deal with what we do.

Some feel, and this is a point I made in my book review, is, I wish we had that.

That, might be the supportive spouses that are Ron and Cornelia. Or a terrific sibling like Walter. It might be Owen's development and progress and significant strengths, the kind mainstream media tend to focus on over severe autism. It might be the Suskind family's combined intellect, and resources.

I cant say for certain but Im guessing the Suskinds could pay for at least some of their services that many others simply cant.

Not to say those things are ever enough to solve many of the problems we face. Or that they arent hard or even backbreaking for all but the super-rich, which the Suskinds are not.

But many of us must rely solely, or almost completely on our insurance, if we have it, or the government.

It's why we drive to Cleveland and back to Chicago to see Ben every other weekend, and have for more than five years, and will keep doing so until we eventually move there. An inconvenience, sure. But its a small price to pay to be able to sleep at night. Ben and us.

And who doesn't want to retire to Cleveland anyway?

The film also displays things in Owen's life, socially and in terms of simply who shows up at a party for him, that is out of the grasp of almost everyone.

And I do not say that with a mouth full of sour grapes.

The Suskinds deal with their situation like every one of us by throwing in everything we have, and doing everything we can, and more than what we even thought we could.

But for most everyone -- me, you, and the Suskinds, we cant do enough, no matter whats available to us.

It is why so much more must be made available.

It's why supporting high-quality, autism-focused organizations is so critical. We need what they provide, and they need so much to provide it.

And, full disclosure Karen and I are in the film.

Sort of.

Even though you wont see us on the screen, the brilliant, Oscar-winning director was actually in our living room, with his full crew and lights and cameras, interviewing us. It was as cool as youd imagine.

Karen refers to us as the Grouchiest People in Autism. I really don't think that's why we ended up on the cutting room floor. Or these days, I guess, in the delete file. I think it was a matter of square pegs and round holes. We wouldn't have fit this film's beautifully-rounded narrative. And they have much worse bad guys in there anyway. Real bullies.

And, were not really bad guys. Because of my Trib review being the only one I know of that wasnt an unqualified lovefest, I was contacted by an excellent National Public Radio program called Radiolab , which was doing a piece about the book.

The difference between being a guest on a show and writing a review is that I was the editor of my review. It reflected exactly what I thought.

With Radiolab, for reasons related to another participant and nothing to do with Life, Animated, I ended up coming off as maybe a touch caustic, and divisive, and, yes, more of a bad guy.

Read through Radiolabs website's "comments." Hoo boy, did they hate me. But hey, I guess that's what I was there for.

Its one reason Im writing all of this. If Im still a bad guy, at least its based on accurate evidence.

And Roger Ross Williams really mustnt think were so bad after all. We in fact did make it into the film. If you stick it out all the way through the credits and read really quickly, youll spot our names in the long, small-print Thank yous.

Thats one reason I like watching Life, Animated on a really big screen.

~~~

My Chicago Tribune review of the book, Life, Animated: http://www.davidroyko.com/lifeanimatedreview.htm

Originally delivered, in slightly different form, at a benefit for The Pam Stern Legacy Of Hope Foundation , and Keshet , May, 2017.

Blog: Juggling Autism: The Chronicles of Ben Royko Severe Autism in Real Time

Ben Stories

davidroyko.com

For more reading on this subject, I strongly recommend: Amy S.F. Lutz: Presume Beneficence - Parents are part of the autistic and I/DD communities, not the enemy (Psychology Today)