Autism Every Day – a late response

I promised colleagues in the UK that I would write about this a couple of months ago. Sorry it has taken so long.

When Autism Speaks launched the Autism Every Day video some people loved it. Some, like me, hated it and were glad to sign the petition launched by Autism Hub founder, Kevin Leitch. A lot of parents on email lists in the UKwondered what all the fuss was about.

• Aren’t we all supposed to be on the same side?
• We want services for our children that meet their needs.
• We want family support – respite for us and help for siblings.
• We want financial support without having to grapple with a benefits system that does not understand autism.
• We want acceptance and understanding for our children, of course.
• But if they weren’t autistic we wouldn’t have a problem. So what is wrong with wanting a cure?
• What is wrong with telling the world how bad things can be, if that gets us some help and attention?

So, what, in my opinion, is wrong with the video?

It is dishonest

The parents in the video have good support systems in place. They included the daughter of Bob Wright, NBC Chief executive and founder of Autism Speaks. They employ therapists who come into the home and work with their children. Some like Alison Tepper Singer, a vice president of Autism Speaks are high flying professionals. But none of this is apparent in the film because, according to an Altnet article, cited by Ballastexistenz

Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.

The author of Ballastexistenz, herself autistic, quite rightly points out that,

This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look. Why aren’t more people complaining?

She goes on to wonder about the effect on autistic children who have their daily routines disrupted so someone can make a film about how hard it is for their mothers.

It is manipulative

I remember one mother was interviewed standing by a road sign that said “Dead End.” The mothers (where are the fathers in this video?) talk as if their child’s life is over. They are mourning for all the things that will never happen. How do they know? Only today I was reading about an autistic 16 year old called Jenny Grasshof who did not speak until she was 5 and has just finished her GCSE exams.

The doctors said I wouldn’t be able to speak, read or write or do GCSEs. But 12 years on and I’ve proved them wrong.

It is insensitive

These parents talk about their children as if they were not there. But autistic children do listen. Wendy Lawson told the Times how her

earliest memories include hearing a professional tell her mother: “Your child is intellectually subnormal.”

[…]

As a toddler Lawson was too young to understand the meaning of the diagnosis. But, sensing its importance, she tucked it away inside. Throughout childhood, whenever she heard the Beatles’ Yellow Submarine, the word “subnormal” came to mind. “I thought ‘Maybe I’m like a submarine. Perhaps I live a sunken life’.”

So what was Alison Tepper Singer’s daughter Jody to make of it when she was in the same room as her mother, who, speaking to camera, confessed to feeling like killing herself and her daughter. And what stopped her? She remembered Lauren, the normal daughter who would be left behind!

It is selfish

Throughout the video I saw kids trying to relate to their parents and being ignored. Jody asks her mum if she is crying. Mum pushes her away. In fact she ignores her daughter’s attempts at interaction all through the video. Then at the end she makes Jody say, “I love you, Mommy.” Another girl is playing up because her mum wants her to go on a swing and she does not want to. They talk about their wishes but do not respect their children’s wishes. One mum says that her son is trying to stay in his world and she is trying to pull him out.

I have just finished reading Daniel Tammet’s autobiography, Born on a Blue Day. His parents respected his world and did not try to force him to conform. Of course nobody told them he was autistic. They just knew he was different and accepted the difference.

Living with autism can be hard

…for all concerned. And I can understand how parents would welcome seeing problems they identify with portrayed in the media. But this was a video with a purpose and a message. The aim was too raise money from corporate sponsors. Then it was aired on national TV and copies sent to US politicians to get them to support the Combating Autism Act. It is through the Senate and now needs to get through the House of Representatives. The act seems like a good idea

I know that many of us in the UK would welcome a package like this.

The Combating Autism Act as passed by the full Senate authorizes over five years about $920 million in appropriations for autism research and services, consisting of

• $ 405 million for discretionary research, collection and storage of data, and a strategic plan for autism research.
• $ 185 million for Autism Centers of Excellence
• $ 45 million for Centers of Excellence in Environmental Health and Autism
• $ 75 million for Centers of Excellence in Autism Spectrum Disorder Epidemiology. ($15 million for fiscal year 2007, plus such sums as may be necessary for each of fiscal years 2008-2011, which we can assume will be no less than $15 million per year.)
• $ 210 million for autism education, early detection, and intervention, including $ 45 million specifically authorized for interventions.
• Such sums as may be necessary for the Interagency Autism Coordinating Committee.

Even so I wonder at the priorities with less than a quarter of the funds devoted to education and intervention and most of the money going on research. Which brings me to …

…the message

And the message from the video seemed to me to be that living with an autistic child is so unremittingly awful that something has to be done. Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.

Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.

For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.

I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself. I hope to return to this topic sooner rather than later. Meanwhile, I offer my response to Peter Bell of Cure Autism Now! as a taster.