Susan's Blog

Wednesday, January 15, 2014

What’s Wright and Wrong about Autism Speaks

Tonight I attended a debut of the John Block documentary for Autism Speaks, “Sounding the Alarm.” Mass General Lurie Center for Autism hosted. The film was mostly what I expected — a combination of scientists with findings or inquiries, sometimes frightening, sometimes heartening, folded in with examples of families (very difficultly) living with autism, mixed in with Suzanne, Bob, or Katie Wright expressing their own perspective and goals. The movie began and ended with Suzanne, giving the emotional grandmother’s view, sincerely articulating her pain and her hopes for Christian, her grandson. Katie illustrated the mother’s side — articulately, beautifully, and stirring my tears more than once.

I did not, however, expect to be so pleasantly surprised by Bob Wright — I assumed he was going to go for the same emotional tone as his wife and his daughter, (and I am not judging that). But frequently when he spoke, he would be discussing something that had me nodding my head in agreement or at least feeling like he was making a legitimate point. Most of what he talked about is what needs to be done legislatively and in terms of access to healthcare, which is true. He grounded most of his talking points in the most scary kinds of statistics and the most mainstream recommendations, such as when he said, “If you act quickly, there’s like a 50% probability that the child can matriculate from a public HS…” Here he was making the argument for early intervention — who could argue with that — but unfortunately most of his knowledge there was based on ABA as opposed to any other kinds of educational approaches. (cont.)

My digression into a critique on autism techniques and educational approaches:

I’m not against ABA, it has its place, but only if the reinforcement is positive and if the practitioners are respectful of the student. It bothered me, however, that so often the teachers in the film were shown speaking loudly for the child’s attention, redirecting hands-on, while the child sat in a brightly lit room with Meyer-Johnson like symbolic picture cards everywhere.

I think that in Autism 101, educators and anyone working with an autistic person should check for overly bright lights, florescent flickering, jarring contrasts, loud tones of voice before they even begin. They should keep a stash of light colored sunglasses for kids to try out to help shield them from distracting or overstimulating glare from paper or from letters on paper, and for stupid florescent light bulbs. There should be carpeting, perhaps, but only if it is hypoallergenic. Check for weird smells in the room, too. And maybe even consider whether this child requires symbolic pictures at all, or perhaps simply photos of things would do? If an autistic person has difficulty generalizing, why do we want him thinking that people are supposed to be stick figures? Furthermore, the educators in the film by and large seemed not at all interested in figuring out why the child was distracted or not willing to look. I’d like to see more respect paid to sensory issues like eye contact being painful, or finding out why the kid has his hands over his ears? Maybe he should not be approached directly or have a hug demanded of him.  My point is, no wonder so many of the children shown in the film were upset; as well-meaning and loving as the parents and staff were, they might have been missing some very important cues from the child. Let the kid chew on stuff if it helps with sensory organization.

Also: consider floortime, and other approaches that aim at connecting with the student from where he is. Don’t be Ableist, don’t assume you have all the answers. Even though you are educated and seasoned in the world, you still have a unique individual in front of you. Respect that.

For God’s sake, this is a neurologically different person, there is no fixing that. Just find ways to connect and work with him.

For me, if all else fails, I ask myself, “What would Nat think of this?”

(Back to Bob Wright and the movie): What I liked best about Bob Wright was his insistence that we engage our legislators in terms of insurance equity for autism treatments and therapies. He said, “The thing that so upsets me is that half the population has coverage through corporations and yet Congress has failed to act on the large corporations or for their own employees in terms of insurance. Congress has yet to move on this issue.” I also liked the way he emphasized the black hole that opens up when many of our guys turn 22 and have to leave school. The film showed Bob testifying in front of Congressmen a number of times, to his credit.

I don’t have notes on who quoted this Harvard study finding, “Lifetime societal cost is 3.2 million per person if they don’t get the treatment they need.” They did not qualify what sorts of challenges each 3.2 million dollar person is facing — are we to assume that every single person on the Spectrum would cost this much to support? That can’t be accurate. This is a typical Autism Speaks strategy, to use numeric data to scare people into taking notice.  There’s some truth, in that we definitely do need funding to educate, job train, teach ADL’s to, and support people with disabilities, but there’s a lot of hyperbole, too.

This is not to say that they are wrong. For many many families dealing with autism, they are right: it is a lot of money to buy respite care, therapy, one-to-one ABA for 30-40 hours a week. It is heartbreaking watching a child regress, as Christian Wright apparently did. By 19 months he had lost most of his skills, according to Bob. This certainly is tragic; I do not blame them one bit for expressing their agony and I give them a lot of credit for turning that despair into a multi-million dollar organization that does indeed do a lot of good.  In 2013 alone the AS budget for family services was $8million. Sure, I’d like to see that tripled for services but I’m not a Wright. I’m not Wrong either, though.

Later on during the q&A I did make the request that they shift even more of their huge pot to services and housing for adults; after all, the film quoted that 500,000 people would be aging out of the schools in the next ten years. 50,000 a year, in need of supports and jobs. Not to mention housing. So, yes, I think AS is top-heavy in their emphasis on research rather than family services. But I did not found the organization, so I don’t get a vote. And yes, AS spends something like 40% of their revenue on raising awareness with efforts like this movie; but that’s how they make all the money that they then do a lot of good with. I merely urged them to do even more in the supports and services arena.

The worst thing in the movie was the mom who said that she could not trust her son to strangers because “Most days I want to kill him. And I love him. How is someone else going to have the patience?”  This is the kind of lurid language that Autism Speaks will use to get donor’s and the public’s attention, but it is very damaging to say this. A lot of people hear this as a way of condoning violence towards autistic people. I know this mom did not mean it that way, but given the violence against autistics in the press lately, it is insensitive if not monstrous and outrageously irresponsible for them to have left that bit in the film. On another level, it is disrespectful to her son to be spoken of in this way.

Okay, well, people have the right to talk about how difficult their kids are. But how about praising all the stuff they can do? There was only one part of the film that showed autistic people succeeding and happy: when they talked about employment. The film showed Andrew D’Eri, a father in Florida who opened a car wash with 35 autistic adults who make up 85% of the staff. His business is thriving. “That makes me feel happy,”  he said. Guys like D’Eri make it look easy and natural to just do it, but we all know that starting a business is anything but simple. Several of the autistic workers were asked what they liked about the job, and here are some of their answers:

“Can’t beat the hours, the money”

“Tire shining”

“Making new friends”

“I was excited when I got the job”

“If I wasn’t working here I’d be sitting at home… I’ve applied to so many jobs and they won’t hire me.”

That last quote had me by the throat. I think the film and maybe even Autism Speaks would be even more successful at getting people’s attention if they were to show more of this positive stuff happening. Isn’t it true that you catch more flies with honey than vinegar? I think that if Autism Speaks could shift out of the catastrophe talk — but not invalidate the parents’ suffering — and move into the success stories, they would have more support in the entire autism community.

So maybe it’s time to evolve out of Alarm and Awareness, and move to Support and Success.

• • •

 

27 comments

Beautiful. I agree. Thanks for sharing, and for being there.

— added by Michael Forbes Wilcox on Wednesday, January 15, 2014 at 10:14 pm

Susan, thanks for posting this! I think you really “get it” about so much the treatment that autistic people receive!

— added by Kate Gladstone on Wednesday, January 15, 2014 at 10:32 pm

Michael and Kate, your comments really mean a lot to me.

— added by Susan Senator on Wednesday, January 15, 2014 at 10:35 pm

Eloquent and reasonable. Thank you for bringing a positive perspective and a piece that I can feel great about resharing on FB. H/T to Michael Forbes Wilcox for bringing this to my attention on Facebook.

— added by Jerri Newman on Thursday, January 16, 2014 at 7:10 am

Susan,
Reading this, I find myself shaking my head with an affirmative “yes, she’s right”. Also, I feel that proverbial strain…So little time, so much to do.
I know that Autism Speaks is making efforts to change legislation, perhaps in hopes that more housing and jobs will be government mandated.
However, the need gets greater by the minute. Each child becomes an adult, seemingly overnight. I would vote for more community involvement.
Bob and Suzanne are yin and yang, probably a balance that typifies many grandparents; one is more emotional, one more pragmatic. And it is true that ABA can be done badly. Therapists should be vetted fully.
Sadly, the mother who articulated frustration with her child, does profile in a negative way, not only to therapists, but to the public. It is irrevocable.
When my mother spent a few months in a nursing home,I had an issue with how staff spoke to her..loud and slow. That is how professionals speak to children with autism. It’s disrespectful, intentional or not. There is a fine tuning that is vital for all.
We can’t forget the Science. It matters for our children an their children’s children.
Lots to do.

— added by Robin Hausman Morris on Thursday, January 16, 2014 at 7:39 am

Susan, nice write up of the evening. I was there, as well, and had wanted to ask what you thought of the film, but I figured I’d be reading it soon enough. Agreed, the film is a mixed bag with some good stuff in it, but overshadowed by too much negativity.

— added by Todd W. on Thursday, January 16, 2014 at 8:12 am

Susan, thanks for your insights — I would have liked to have been there.

I’m going to confine my comments to the the question of cost. The $3.2 million dollar number came from a study by Abt Associates, which I’ve read. That number did not include simply the costs of care, but opportunity costs: how much would a parent who has quit working to be a full-time caregiver have earned had he or she been in the workforce, and how much would the autistic individual have earned, had he or she been employed full time.

Also, bear in mind that number is an average. My son is on track to cost $10 million dollars, simply for direct costs of care, not including opportunity costs. That balances out a whole lot of people who are just getting SSI and food stamps.

While there may indeed be hyperbole in the video, I doubt it’s in the comments about costs.

— added by Catherine Boyle on Thursday, January 16, 2014 at 10:20 am

I’ve had mixed feelings in the past, but after Suzanne Wright’s most recent statements, I finally realized that I just could not get behind Autism Speaks anymore. My sense is that they developed a bleak rhetoric about autism in order to motivate others to donate, and also to encourage lawmakers to take action. Fair enough. The problem is that the autism community has grown so much and changed so much over the last few years…there are so many new voices and perspectives, and people are creating new paradigms for how we understand autistic experiences. Autism Speaks has not recognized any of these changes, and I think for many people it no longer has a connection to the community it ostensibly represents.

Anyway, this is why I see the group as doing more harm than good; it was clear with Suzanne Wrights comments that Autism Speaks had decided to remain willfully tone deaf. I appreciate your points in this article, I find them to be balanced, a good overview of the issues. Reading this post, I don’t really know what I think yet. I basically find myself liking some of Bob Wright’s comments about engaging lawmakers, but not feeling any differently about Autism Speaks due to it’s choices/POV. Thanks for this post and the opportunity for discussion.

My hope is that, instead of attacking Autism Speaks, the community can began to create and/or support groups that are getting it right. Autism Speaks does what it does for a reason, I don’t think they’re likely to change their approach. Hopefully we can find or create groups doing construtive, positive work and boost them, give them our support.

— added by M Kelter on Thursday, January 16, 2014 at 11:57 am

(by the way, it’s okay to delete my comment…in retrospect, I worry I’m just venting…this is a good post, I don’t want to add negativity.)

— added by M Kelter on Thursday, January 16, 2014 at 2:35 pm

I like “Tire Shining.” That one makes me smile, but that being one of the good things about this Car Wash business. Why aren’t there more businesses like that?! I guess that and the housing issue are the ones we need to focus on. With autism being as vague and difficult as it is, these are issues in which we can DO SOMETHING!

Thank you Susan.

— added by Susan Anderson on Thursday, January 16, 2014 at 3:06 pm

[…] a friend (who has long been an enthusiastic supporter and fundraiser for AS) about a line in the documentary shown at the Lurie Ctr in which a mother says that she couldn’t trust her son to strangers […]

— added by again | a diary of a mom on Thursday, January 16, 2014 at 4:37 pm

Hey there. I first heard of you from Jess from “Diary of a Mom.” I too am an autism mom – of a bright, loving, friendly, and just magnificent almost 7 yr old son. Your best quote, thought not from this article, but from your about me column: ” If you can accept that this person is different, but a person nonetheless, you are halfway there. For the rest of the way, you need a few great friends, a lot of information, and a sense of humor.” That was powerful and hit the nail on the head. Thank you.

— added by Thayana Torres on Thursday, January 16, 2014 at 5:11 pm

Great column — we also will bring attention to it. And the ending hits a great point- on to Support and Success!

— added by Leo Sarkissian on Tuesday, January 21, 2014 at 11:58 am

Thank you for the kind words Susan. I especially appreciate your comments about my parents. They did not have to found Autism Speaks. They could have just helped my family and enjoyed their well deserved retirement, but now they work harder than ever.

I want to people to understand the sadness the my Mom expresses to because of me! As you can imagine, waking up every day for a year terrified that my son had lost more skills and words made me very determined to do everything on earth I could to help him but it also made me emotionally very fragile. The boy who used to sing and hug me and beg to “drive” our car suddenly spent his days and nights screaming, trying to bang his head on the floor or trying to bite people. Nothing we were doing was helping. Naturally I called my mom often and she was on the receiving end of many desperate and tearful phone calls- for years. She was in pain for me and Christian and also grieving the end of the very special relationship she had with her first grandchild.

Meanwhile my Dad knows all too well the costs of autism! We would be living in our car right now without his support! For years ABA was out of pocket. The $3 million number is low for those with severe autism, especially regressive autism and for ASD people and with medical problems! The medical bills were beyond belief. But if your child is severely ill you will kept spending and go into debt. Finally we found a GI who could help Christian. But it should never be this hard, and it is still so difficult to find doctors who understand the medical problems of ASD kids.

I think living with the memories of those horrible early years was traumatic for my Mom (and myself). At first it is unbearably hard but at time goes by we all became stronger and very much live in the now. Everyone appreciates and accepts Christian for who he is today. I love his playful nature, his love of all thing water (the pool, the beach), how he sweetly affectionate, his ability never to judge and believe the best of people. Naturally I will never accept that he has had terrible GI pain or autoimmune dysfunction or wants to strike his head. I hope people understand that is what Moms like me mean and AS means about, “cure.” We want our kids to have the highest quality life possible.

— added by Katie Wright on Friday, January 24, 2014 at 3:42 pm

I understand, Katie, maybe more than it seems. And I’m sure my mom and dad could relate to this, too. Nat was their first grandchild. Thanks for writing.

— added by Susan Senator on Saturday, January 25, 2014 at 9:43 am

I particularly understand Katie Wright’s comments. Her mom is hurting for her child who is hurting for her child; an endless cycle of wanting to make it better. This shouldn’t even be a defensible act. It is mother nature calling, in its most naked exposure.

— added by Robin Hausman Morris on Saturday, January 25, 2014 at 9:55 am

Hi, I`m a psychologist from Romania….where or how can I see this movie?
I`m really interested. Thank you

— added by Corina on Monday, January 27, 2014 at 4:21 pm

I guess you’d have to ask someone involved with Autism Speaks. This was a screening, a joint presentation from Mass General Hospital and Autism Speaks.

— added by Susan Senator on Monday, January 27, 2014 at 11:54 pm

Yes, of course.

— added by Susan Senator on Monday, January 27, 2014 at 11:55 pm

But there is a dark undertone to even their positive stuff. Notice how the only time autistic people are happy is when they are gainfully employed.

After decades of seeing organizations and corporations cherry-pick facts, I have a B.S. detector that goes off all the time.

Message: Autistic and other disabled people don’t need employment to validate their existance. That assumption comes from our state religion: capitalism.

— added by Anon on Monday, February 3, 2014 at 4:59 am

Where can I see this? I have worked as a DSP in the past and also as a Behaviorist but now am on the macro end of things, working on the advocacy end. I would love to see it and share with my colleagues. I know of the difficulties of Autism but also the amazing triumphs these individuals can accomplish, however at the end of the day I am well aware of how the system under serves individuals with I/DD and how there is a great need for more comprehensive understanding and for extension of services.

— added by Danica W on Wednesday, February 19, 2014 at 3:44 pm

We are fundraising right now in our public schools, and I am pushing for some of the funds to go to local groups like AutismNJ and POAC instead of Autism Speaks for that very reason|: that AS does not focus on the Here and Now. I am not interested in stem cells and genetic manipulation. People with autism need love and acceptance now, they need care now,they need to be taught skills now, and we can’t put these issues on hold while We push money at curing autism for those who have not been born yet. having a son and a nephew with autism has taught me not to be afraid of loving people on the spectrum. I want to help others learn the same thing today.

Sher

— added by Sher DeGenova on Saturday, March 29, 2014 at 7:17 pm

I totally agree with you, Sher. I also believe that the largest reason for the “epidemic” is that the Spectrum is incredibly broad — Asperger’s is now folded into it — and diagnosis capability has tightened tremendously. Society is now realizing that whole minority populations have been drastically underdiagnosed, as well as females. This is the main reason numbers keep shifting in the alarming ways reported by the CDC.

— added by Susan Senator on Sunday, March 30, 2014 at 9:38 am

Many people on the spectrum identify a further problem with the way that spectrum-related statistics are being used.

Have you ever noticed that “Autism Speaks,” for instance, counts Asperger’s as part of autism whenever “Autism Speaks” talks about the prevalence of autism …
BUT, whenever anyone with Asperger’s speaks about autism, speaks about his/her own experiences and observations, says that he or she is autistic (according to the same definition and stats that “Autism Speaks” and others are using), “Autism Speaks” says: “Oh, no, no, YOU are not REALLY autistic! YOU cannot speak about autism: only WE can: although we are not autistic either, of course!”

The message — to Aspies and other spectrumites — is that we are “autistic enough” to be counted, but not “autistic enough” to count. We are “autistic” when autism means a statistic that can get the dollars rolling in, but “not autistic” when it comes to whatever those dollars were collected for.
(This is one reason that John Robison — who was autistic enough for “Autism Speaks” when they decided it was convenient for them to have one autistic member on their board — left “Autism Speaks”: the rest of the board made clear to him, daily, that they thought he was too autistic to have a voice in anything they decided, yet also not autistic enough to have a voice in anything they decided about autism.)

In my own experience and observation, by the way, Asperger’s issues are as disabling (in terms of sensory problems and much else) as any other autism issues. The biggest difference (I often wonder of it may be the ONLY big difference) between an Aspie and a non-Asperger’s autistic is that the Aspie is a fluent talker.

For instance:
of the eleven autism cases in Kanner’s original report on the condition, at least the first three — and probably the first four or five — would have been unhesitatingly diagnosed as Asperger’s instead of as autism if these kids had walked into a psychiatrist’s office in, say, 2004 rather than 1944.
They were “autistic” to Kanner — they would have been “children with Asperger’s” under DSM-4 — now, under DSM-5, they’d be “children with autism.”
So, if anyone is to be blamed for “folding Asperger’s into autism,” don’t blame the DSM-5 committee: blame Kanner!

In our own times, too, autistics who eventually learned to talk fluently have gotten re-diagnosed as Aspies even if their other autism issues were still there —
E.g., some autism specialists have pointed out that Temple Grandin, if she had never been diagnosed as autistic but had still gotten speech therapy (under some other diagnosis) and had first seen a psychiatrist five or ten years ago instead of in childhood, she would have been diagnosed with Asperger’s almost the moment she showed up.

— added by Kate Gladstone on Sunday, March 30, 2014 at 2:54 pm

This is a great piece. I only heard recently about this documentary and was glad to come across your blog as the first place to learn more details on it. I’m actually writing something about Autism Speaks and their history of these types of films & “marketing.” Much of the same unfortunate propaganda from AS, I agree with all your points. I particularly love what you had to say about ABA and teaching our children! Take care.

— added by Lauren Markham on Wednesday, April 23, 2014 at 4:21 pm

[…] I cringed too when I first heard the title. I have yet to view the film myself, though I have read detailed reviews by trusted sources. There are some silver linings to this film. Autism Speaks is finally discussing […]

— added by I Am Sounding the Alarm (on Autism Propaganda, Everyday) | LAM on the LAM on Wednesday, April 30, 2014 at 12:25 pm

I agree that the Wrights need to show more positive coverage of autism and spend more on family services. I did not know that Sounding the Alarm had an interviewee that said she wanted to kill her son. Autism Speaks made a documentary called Autism Everyday where one of their executives said on the Oprah Winfrey Show that she wanted to kill her daughter in front of that daughter. Typical fearmongering. These two instances bare remarkable similarities. It seems Autism Speaks really hasn’t changex in eight years. When, and if, they will I can’t be certain, but it is clear to me that they must change or die and until that day, I for one refuse to support them.

— added by Ben Edwards on Tuesday, July 8, 2014 at 6:49 pm