11/25/2013

Autism is Struggle, But Not Only: Why Autism Speaks Hurts Severely Disabled Autistic People the Most

Some people say that while Autism Speaks doesn't represent the experience of autistic people who function well, it accurately describes the lives of those most severely affected. I understand why people think this way, but it's a misconception.

First, let's lay out what we can all agree on: both for autistic people and their families, autism involves struggle.

My family knows this firsthand.

Even at his most disabled, my brother could not have been considered among the most severely affected.  He spoke late, rarely, and atypically--but he spoke.  Although he tests poorly in general, his intelligence has been obvious from the beginning.  But still, our entire family knew struggle.

My brother suffered from bullies who picked on him and then let him take the blame when he exploded.  His teachers didn't understand him, and told him meaningless platitudes like "be polite" instead of what he was supposed to say and do.  His understanding of language was then extremely literal, and he had not yet learned to interpret body language and facial expressions, so everyone was constantly mad at him, and he had no idea why or how to protect himself from their anger.  When he was about eight years old, he drew a picture which still hangs on the wall of my father's kitchen.  It shows Bilbo Baggins running from a huge dragon, his arms flung wide and a look of open-mouthed terror on his face.  This was how my brother saw the world in general.

He would get overwhelmed and go into fight or flight mode most days, and the school would send him home early.  He had to change schools more than once.  My mother had trouble finding a job that would let her leave work unpredictability to pick him up from school after another meltdown.  We were afraid he would be kicked out of school. We were afraid he would still have meltdowns as an adult, and end up in jail.  We were emotionally exhausted from calming him down.  I was called in several times at different schools and summer programs to calm him when he was in full meltdown mode. Holding a child not much smaller than you, making your breathing and your voice low...and slow...and calm...while he hits and kicks and screams at you, leaves you feeling drained and bruised and about a hundred years old.  That I could accomplish this in high school when supposedly trained adult teachers and camp counselors couldn't didn't make me feel better.

We still worry about him, though he has developed impressive skills in every area of life and is now applying to college.  We worry how he'll manage when living away from us for the first time, in another state.  Who will he turn to for help?  Will he turn to others for help?  Will he make friends, or will he stay in his room and feel lonely? Will he organize his time, his space, and his work? Will he be happy?  (I know he can manage these things, but it's natural to worry).

Other families deal with worse.  A friend babysits an eighteen year old who can't speak, isn't toilet trained, scratches people when angry, and enjoys destroying things.  Some families have children who bang their heads against the wall repeatedly, or scream for hours at a time, or melt down every time they go out in public.  As frustrated and overwhelmed as these parents are, their children's behavior indicates they feel even worse.

Even autistic adults who use the term "neurodiversity" struggle with the disabilities involved in autism--and they're quite vocal about it.  They talk about difficulty speaking, and how exhausting and frustrating it is to have to speak and explain themselves when they can't.  They talk about exhaustion from having to do things their disability makes difficult--and having to make it look easy so they won't be judged by friends, family, and coworkers.  (Some describe it as putting on a mask, pretending to be someone they're not).  They talk about struggles with recognizing faces, making friends, finding a job, living independently, even choking on a glass of water.  They talk about coping with physical pain in public places from itchy clothing, strong smells, crowds, and loud noises.  They talk about fear.  The blog "We are Like Your Child" isn't just a political claim that autistic people have the right to speak about their condition.  It also reflects that even autistic people who speak, hold down a job, and raise families struggle every day.

In short, everyone agrees.  Autism is exhaustion, struggle, and worry.

Unfortunately, Autism Speaks isn't just saying that autism families struggle and need support.  Few would object to this.  Instead, they say:

"These families are not living. They are existing. Breathing--yes. Eating--yes. Sleeping--maybe. Working--most definitely--24/7...Life is lived moment-to-moment.  In anticipation of their child's next move. In despair. In fear of the future."

These families are not living? Really?!  Think about that for a moment.  The implication here is that because autistic people and their families struggle, their lives are so miserable they're not really living at all.  Instead of embracing the usual mix of joys and sorrows, hopes and fears--sometimes at the same time--that all humans experience, their lives can be reduced to one-dimensional cartoons of fear, exhaustion, and pain.

Autism involves struggle, but not only struggle.  To reduce autistic people's and their parents' lives to misery alone is to take away their humanity.  No one's life is so hard, so deprived, that it utterly lacks moments of banality and joy.  This is why the autism community is protesting against Autism Speaks.

I have no idea where this idea comes from, that a life of struggle is no life at all.  To me, this idea is inhuman--and an incredibly recent product of a life of privilege that people who live amidst poverty, or war, or political oppression, would find offensive.

But let's be scientific about this.

If struggle truly made a life miserable and not worth living, then we should see that trend in international happiness data.  Specifically, countries rife with poverty, war, and disease should have uniformly low happiness ratings, while rich, peaceful countries with healthy and educated populations should have uniformly high ratings.  In fact, we find a more complex pattern.

It is, in fact, true that unemployment, divorce, and economic instability reduce happiness around the world.  However, countries with positive life satisfaction include China (with its income iinequality, corruption, and censorship), India (with its income inequality, poverty, and class issues), and Bangladesh and Nigeria (both much poorer than European countries).  Humans have an immense ability to adapt to both prosperity and adversity (as Dostoevsky put it in Crime and Punishment, "man can get used to anything, the scoundrel").  People in Afghanistan and Latin America are equally happy, and both fall above the world average.  Crime, corruption, and obesity all make people unhappy, but increasing the amount of these problems reduces their effects on happiness.  Similarly, freedom and democracy tend to make people happy, but make less of a difference in locations where they're in short supply.

Life satisfaction does rise with income, but only up to a certain point--after this, income de-correlates with happiness, while marriage, equality, and health become more important.  These diminishing returns apply at both the individual and the country level.  These findings were first discovered in 1974 by Richard Easterlin and dubbed the "Easterlin paradox": while richer people are often happier than poor people within the same country, rich countries like the U.S. aren't any happier than poor countries like Sri Lanka.  Furthermore, income increases within a country don't necessarily improve its happiness: U.S. incomes have grown dramatically since the 1960's, yet average happiness hasn't changed

In the interest of completeness--some studies do find that "money buys happiness."  However, these studies ask people at one single point in time to globally rate their general satisfaction with their lives.  This measure reflects general self-perceptions rather than actual day-to-day experiences--which are the stuff of which life itself consists.  Millionaires might say that they're happier than less wealthy people because they know they're "supposed" to feel that way; but moment to moment, they're no happier on average than other people.  If you ask people repeatedly how they feel at particular moments in time--the moments of which life actually consists--you find that happiness does level off after a certain income level.

As researcher Carol Graham argues,

"The bottom liine is that people can adapt to tremendous adversity and retain their natural cheerfulness, while they can also have virtually everything--including good health--and be miserable."

What does seem to make people happy is social relationships.  For 200 male Harvard undergraduates followed for 75 years, strong relationships predicted happiness--not career, not money, not health.  This study is only one of many indicating that those with social support lead happy, meaningful lives, while those lacking it may not.

So if families of autistic kids are "existing rather than living," that's due not to autism, but to lack of social support.

People incorrectly assume that Autism Speaks represents the perspective of those whose lives have been touched by the most severely disabling autism.  But in fact, it's these people who are hurt the most.  Autism Speaks presents their lives as meaningless and worthless--and parents of severely disabled children have noticed, and describe their lives quite differently.

Linda Mastroianni writes that:
"autism is exhausting, worrying, heart-wrenching, but it is also about triumphs and milestones and making huge accomplishments when others (like Autism Speaks) have handed down a life sentence of despair, pain, financial, and marital ruin...

I know what it feels like having a child that is constantly screaming all day.  I know what it's like to have a child that wants to take off his clothes all day and just stay in the bathtub.  I know what it's like having daycare call, advising you that they can no longer care for your child because he is just 'too much to handle.'

But I also know what it feels like to see this child develop; to have been blessed with therapists that have helped him to ease down on the screaming until it was a thing of the past. I also know what it feels like to see this child go to school and play with friends. Yes, he is in a special school for special needs kids, but that doesn't make the quality of his life any less than ours...I take great offence that they label my son as a burden."

Brittany, a beautiful 23 year old woman, is largely nonverbal, with classic autism.  She has difficulty coping with changes to her routine, she doesn't understand money, and she can't cross the street unaided, much less live independently.  But she lives happily, and has strong relationships with friends, family, and community.  She has learned to tolerate going out in public, and enjoys getting her hair and nails done.  And she recently walked the million steps of the Camino de Santiago to raise awareness of autismBrittany's mother does not sugarcoat the difficulties and expense of raising Brittany, and of working not only to prepare her daughter for the world, but the world for her daughter.  But she also recognizes the joys, and takes pride in Brittany's every success.  (I admire her greatly and wonder if I would have her strength and patience, should I someday have a child with similar challenges).

TL;DR (too long didn't read)?  Try this pithy statement from @autismand1 on Twitter:

"My son is severely autistic, intellectually disabled, but even in our hardest moments Autism Speaks does not speak for us."

There you have it.  Autism Speaks does not speak for anyone, except perhaps its founders.

If we really want to help the most severely disabled autistic people, we need to stop demonizing them and painting their and their parents' lives as worthless.  Instead, as individuals we need to lend love, understanding, and a listening ear.  As a society, we need to provide economic support, as well as opportunities for education, employment, and housing to autistic children and adults.