Autism Speaks Sounds the Fear

An unusually warm winter evening. Mid-January, no snow on the ground and the sky overcast, with the light nearly gone and nigh setting in. One the damp street, cars carried their owners homeward in a dense pack, heading down the hill toward the river. As I neared the plaza for the event (the screening of a new documentary), a small cluster of individuals with signs were gathering on the sidewalk at the entrance. Since I was running a bit late, I did not stop to talk, though I had wanted to. They were members of an advocacy organization there to protest the organization that made the film.

On Wednesday, January 15, Autism Speaks, in conjunction with Massachusetts General Hospital's Lurie Center for Autism, held a screening of their new documentary, Sounding the Alarm. The group out front were autism self-advocates who were protesting the film because they feel that Autism Speaks siphons off funds from local communities through fundraising, then gives very little back, as well as their use of negative imagery and words. According to the Facebook event page, the film is described as resorting "to rhetoric of fear, pity, tragedy, crisis, and burden to talk about autistic people".

At any rate, I made my way into the conference center where the screening was held, found a seat, and settled in to see just what all was in the film.

Left to Right: Liz Feld, Chris McDougle, MD,  and John Block

The event opened with introductory comments by the Lurie Center's director, Dr. Chris McDougle, who began by citing the current estimated rate of 1 in 88 people in the U.S. having a diagnosis of autism, with the rate at 1 in 54 for boys. He described it as a public health issue and a "crisis", because once individuals with autism turn 22 years old, there is little to no support available for them. When he gives talks, he said, "99% of the audience has an image of a child in mind", they don't think about autistic adults. Dr. McDougle then talked about the Lurie Center's goal of providing support and treatment for autistic individuals "from birth to death"; the center includes physicians from all specialties who are educated about how to interact with autistic children and adults (e.g., consider sensitivity to light or sound, physical sensations, methods of communication, etc.). He also mentioned the center's policy arm, which works with legislators to address issues related to autism.

Autism Speaks' president, Liz Feld, also said a few words before the film began, mentioning how Autism Speaks invested $50 million in institutions in New England. There is a "tremendous lack of awareness" of the lifelong issues facing families with autism. The aim of the film, she said, is to raise awareness of aging out of the support structure. After commenting on how a Massachusetts bill reforming autism legislation is a model for other states around the country, the lights darkened and the film began.

As with Dr. McDougle's remarks, the film began with text, showing the prevalence of autism in the 1970s and moving through the two other data points we have on prevalence estimates since then, declaring we are "headed toward 1 in 50". The text fades and "Sounding the Alarm" appears in prominent letters. 

"Battling the Autism Epidemic"

The screen goes black and "Battling the Autism Epidemic" appears in white text. There's a brief scene showing a little boy named Kristopher Wilson. His mother has brought him to be assessed for autism and we see him playing with some toys as a therapist tries to get his attention, before the scene shifts to an interview with Bob and Suzanne Wright, founders of Autism Speaks.

"If this were an infectious disease, we would be all over this," Mr. Wright says, while Mrs. Wright recalls her grandson, Christian, being diagnosed. "I'm losing Christian." Their daughter, Katie, explains how she tried to get early intervention for her son, but everywhere she looked there were 6-month waiting lists, even if she "pads the pockets".

"Paying for Treatment"

This section begins with Lorri Unumb, Autism Speaks' vice president of state government affairs, describing autism as a "medical disaster". She notes that there is an urgent need to reform state insurance laws. This is underscored by the story of the Lawrence family who are forced to move from North Carolina to Indiana so their son, Shane Bradley, can get ABA therapy. They describe him as being in a race, that they need him to catch up to a normally developing three-year-old. "We want him to say 'I love you', not become a Rhodes Scholar at Harvard." They say it's wrong that they need to move in order to get insurance coverage for Shane's 30-40 hours per week of ABA. His parents Then there is the Mills family, who have paid over $120,000 out of pocket in the last two years for his their son Shane's therapy. [Author's note: I mistakenly said that Shane was the Lawrence's son and that they paid $120,000 out of pocket for his ABA. This was an error in my notes and was pointed out by Ms. Lawrence in the comments.]

Cut again to Unumb talking about an "autism tsunami". She mentions that lifetime treatment for one person will cost over $3 million. Noticeably lacking from this figure is the context: is that $3 million for a severely developmentally delayed, non-verbal, self-injurious person with no self-care skills? Is it for those with Asperger's Syndrome, who can live on their own with minimal or no additional support beyond what any other person needs? Somewhere in between?

Bob Wright appears again, saying that even though state reforms have helped improve coverage through private insurers, it is a failure of Congress to act to reform corporate-sponsored insurance.

An image of war. A marine (missed his name...Millsap?) was injured in Fallujah, Iraq. He has military insurance, but since he is retired, his insurance does not cover ABA for his autistic son.

Next we have the story of Candi and Dan Spitz. Dan was the lead guitarist for Anthrax. He and Candi have twin sons, both with autism. They describe how they have had to sell their cars and get help from his mother to pay their rent. "If the day starts with a meltdown, it just gets worse and worse." They talk about how they have to turn down social invitations. There's a scene of Candi telling her sons that their dad is going to be gone for a few months. The segment ends with Candi crying on Dan's shoulder.

"Why is autism on the rise?"

The film notes that autism was "first described in the medical literature in 1943" by Leo Kanner, and asks "did it exist before 1943?" Dr. David Amaral, Director of Research at UC Davis MIND Institute says it probably always existed. (I agree, and, while Kanner may have been the first to describe autism as a distinct syndrome, he was not the first to note it.) Dr. Amaral describes how there is not a single gene behind autism, but a range of genes implicated in the spectrum of disorders, and that those currently do not account for all cases of autism. (Bob Wright appears again, stating there is "no such thing as a genetic epidemic".) Amaral mentions environmental triggers, such as parental age and environmental chemicals like flame retardants and BPA, being examined for possible connections to autism, while Dr. Irva Hertz-Picciotto, also with UC Davis MIND Institute, brings up nutrition and pollution as potential culprits. The Lurie Center's Dr. McDougle also appears in this segment, stating that with regard to vaccines and autism, for the typical person, vaccines are not going to cause autism, but that there may be a subset of people for whom it might. Toward the end of this section, Katie Wright again talks about the difficulties, about Christian "acting crazy" in public and how she does not like to think of the long-term goals. She comes across as frazzled and at her wit's end.

"Preparing for Adulthood"

Kent Martling, a 21-year-old autistic man who was in attendance at the screening, features prominently in this segment. He is shown learning how to take a bus on his own. He is described as "high functioning" and "functioning at the level of a 12 or 13 year old". When he turns 22, he will no longer be eligible for support services, while those who are lower functioning might qualify for support from state agencies. He is an articulate young man who says that he and his mother have talked about the possibility of him getting a job. As his story segment ends, he is shown packing to move, and his mother describes thinking about his future like looking into a "deep, dark well that has no bottom".

Jim and Kim Piatek were also in attendance. Their son, Drew, is also 21, nonverbal, and was diagnosed at 3 years of age. He was doing well, hitting major milestones, but then in 2011 he began to develop severe OCD, to the point that it would take 3 hours for him to have dinner. He became angry and self-injurious, and his father bought protective equipment to wear when they had to move Drew from one place to another. They worry about him being abused, and that if they aren't there, he won't be able to communicate what happened to him. Mrs. Piatek says that they want their son to be happy. "If they don't find a cure, I at least want him to be autistic and be happy."

The last story focuses on East End Disability Associates (EEDA), which offers respite care. One parent who utilizes the facility expresses a measure of distrust that a group home could provide good, loving care. "I want to kill him sometimes, so how can someone who makes $12 an hour" care for him, she asks. Another client, Matthew, is shown. He has autism and Down's Syndrome. He is very self-injurious, and his mother says she feels "like I'm failing as a mother". EEDA has been involved in protests, along with 32 other agencies that provide support services, against state cuts in funding to organizations like theirs.

"Looking for Answers"

As the title of this segment suggests, the focus is on research. While we do not know any "cause or cure" for autism, we do know how to treat it in some instances. Dr. McDougle and a colleague at the Lurie Center discuss neuroinflammation, looking for markers of inflammation to identify subtypes of autism that may respond to anti-inflammatory drugs. On the other side of the country, Dr. Amaral's team are looking at certain antibodies found in about 12% of women with autistic children. Their research involves injecting these antibodies into rhesus macaques at different stages of their pregnancy. Their offspring are then observed to have autism-like behaviors, such as repetitive flipping, social withdrawal, etc. He suspects that if continued research bears out their initial findings, that it could lead to a screening test, and that doctors could try to eliminate the antibody. (One thought that comes to mind is that the antibodies they are finding might be produced by the body for a good reason and that eliminating it may have unintended consequences.)

"Employment"

The film notes that autistic adults find some amount of employment at places like Home Depot and McDonald's, then highlights John D'Eri, who started a car wash focused on employing autistic individuals. The inspiration was his son, who has autism. The business employs about 35 autistic adults, roughly 85% of their staff. Those with classic autism are described as the best employees: they can be given structured, repetitive tasks. Some of the employees are asked what they like about working there. One likes shining the tires, another like the money and hours, and another mentions he's happy because otherwise, he wouldn't have a job. "I've applied to so many jobs and they won't hire me."

As the documentary nears the end, more text appears on the screen: "Since 2005, the prevalence of autism has doubled." (Again, it's important to point out that missing from this statistic is the context of the history of autism prevalence estimates in the U.S., so this statement is a bit misleading.) Dr. McDougle says that it is "embarrassing" when you compare the amount of money going to research into autism spectrum disorders with the money going to cardiovascular disease, cancer and the like. Suzanne Wright says, "We need an autism czar." Dr. Amaral states that "autism is a bellweather; it's a canary." (At that comment, one woman in the audience uttered an emphatic "Yes!")

The scene returns to Kristopher Wilson, who was introduced at the beginning of the film. He gets a diagnosis of autism, and his mother starts crying, but she says they are not tears of sadness; they are "tears of joy to have a relief knowing what's wrong."

The film ends with images of Christian Wright and his family in a pool.

Q&A

As the lights came up, the floor was opened for questions. One woman whose daughter has autism and whose son has OCD asked what the impact of the Affordable Care Act would be. According to Liz Feld, the ACA lets the states decide if their health exchange will cover autism treatments. Autism Speaks is reportedly working with the Department of Health and Human Services to get autism listed as an essential coverage by 2016. Another parent commented that it's good we state-by-state insurance laws, but that unless legislators have a kid with an ASD, they just won't get it.

Donald Washington, an autistic adult who started the Missing Pieces Project, liked the film. The spotlight on employment hit home for him, and he noted that "all we look for is acceptance". He appreciated that the film was made, because it lets people know what autism is like. He ended by saying that speaking up is the most important step. Liz Feld responded, saying that they use the car wash scene to show employers and families what can be done and to inspire them.

Susan Senator brought up a statistic from the movie that over the next 10 years, approximately 500,000 autistic people would be aging out of services. Happy that they included that figure, she also urged Autism Speaks to consider shifting their money around, perhaps by drawing some away from research and putting it into employment and housing services. It needs to increase from the current $8 million AS spends on support grants. I encourage you to read her account of the evening. She has some good insights into the good and bad points of the film.

There were some other comments and questions that I missed, but Liz Feld ended on the subject of wandering. With more and more media attention recently, "it has reached a terrifying level". She recommended that families talk to first responders and neighbors when they move into a new area to raise awareness. She used the example of a young boy that wandered off in the middle of the day and is still missing.

My Take

There were positive moments in the film. I agree with the call for insurance reforms and increased support services and awareness education. But there was an awful lot wrong with it. The overall framing of the issues was such that it used negative imagery and fear to try to get its message across. Many of the stories (in particular Katie Wright and Candi and Dan Spitz) would make someone who knows little to nothing about autism terrified of an autism diagnosis. There was a lot of focus on how difficult these families had it. The balance was definitely tilted toward those families who are dealing with the more severe end of the spectrum. I know that autism can be challenging and exhausting for everyone involved, from the autistic person themselves to their parents, siblings, teachers and so on. I get that. But there is so much more beyond the negative, the fear, the tears. When I very briefly caught the filmmaker, John Block, afterward and asked where the film is going from her, he said that it's mainly going to be at similar venues and "preaching to the choir", most likely. I got the distinct impression that two groups were seen as the audience for the film: legislators and neurotypical parents of autistic kids.

I would have liked so much more for them to have avoided the negative rhetoric ("autism epidemic", "autism tsunami", "crisis", "medical disaster", "losing" the child). It's all the same kind of nonsense we hear from those who blame vaccines for autism. Speaking of which, I'm going to have to think hard about my support of the Lurie Center, if its director seriously gives weight to the idea of the vaccine causation notion. They have a lot of good programs going on, but to hear that from the head of the center? Hmmm...

Another thing that rubbed me the wrong way about it was the employment section. Don't get me wrong; it was great that they highlighted people who had full time, productive jobs, but the impression was that menial jobs are the only ones available to those with autism. Home Depot, McDonald's, washing cars? Is that the best that they can hope for? Why did they not include profiles of, say, business analysts at Goldman Sachs? Autism Speaks had an opportunity to show the those with autism could do more than menial, low-wage jobs. Show the range of possibilities. Plus, as Susan Senator states in her post, not everyone can just start up a business focused on employing autistics. It's an inspiring story, but unrealistic for most of the people who might view this film.

Autism Speaks once again fell into their old habit of using fear and negativity to drive their message. The folks picketing the screening out on the sidewalk have very good reason to be upset with AS. This organization purportedly works to unite everyone affected by autism, but this film seemed more focused on representing the family members who do not have autism than the people who are autistic.

Protesting Autism Speaks. Photo credit: Lydia Brown