For Whom Autism Speaks

for whom pic for blog

Though it is generally time consuming, I believe it’s paramount to look at both sides of a controversial subject before or instead of coming to a conclusion. This week I went to a lecture featuring Bob Wright, Co-founder of Autism Speaks. Before the lecture, I had heard about the ‘Boycott Autism Speaks’ movement. I was curious to hear what Bob Wright had to say and if any of the concerns expressed by this new movement would be addressed. The talk was relatively short. He showed several videos that  highlighted work that Autism Speaks has accomplished in their 10 years of existance. If you’re not already familiar with Autism Speaks, have a look at their website, which is full of resources. There are many free ‘kits’ that are designed to help those living and working with people who have Autism. It’s impressive.

If you go to www.BoycottAutismSpeaks.com, you’ll be able to read some of the objections to Autism Speaks. Here’s a summary – the senior leadership does not include anyone with Autism, the organization has expressed anti-vaccine sentiments, they have allowed the Judge Rotenberg Center* to recruit students at Autism Speaks fundraising walks, a disproportionately small amount of the budget is spent on services and supports for families, and their advertising presents Autism as a burdensome tragedy for families. But there are other groups that have found fault with Autism Speaks, such as Autism Parenting Magazine and numerous blogs.

*While I was researching online for this post, I got diverted (only for about 3 hours!) on the subject of using aversive therapy, specifically an electric shock device used as a behavior modification tool, which was the subject of controversy around the Judge Rotenberg Center. Personally, as soon as I hear electric shock, I think about 2 things:  invisible  fences for dogs (which always seemed kind of cruel to a cat owner, even though I understand that they keep pets and people safe) and ECT (electroconvulsive therapy) which enabled my sister to function again after a severe bout of post-partum depression for which she was hospitalized. To begin with, if you can stomach it, you can see a video of a student at the Judge Rothberg Center, Andre McCollins, being restrained and shocked many years ago when he refused to take off his coat  –  https://www.youtube.com/watch?v=YcxpGKctZMs. It’s DISTURBING. There was an ensuing law suit, among other consequences, after this incident. The use of such a device in this instance was undeniably excessive, inappropriate, and abusive.

However, when it’s used the way it was designed, to deal with extremely aggressive or self-injurious behavior, some parents actually believe it has saved the lives of their children. Parents have pleaded with the courts to allow this form of treatment.Talk about considering both sides of an argument! I challenge you to do some research. Find the testimony of a former employee of this school and an article by parents who swear by the methods used. What would lead parents to approve of this? Are they sick? Well, you decide. What if your child had an intense self-harming behavior such as head banging that was severe enough to cause a stroke or dislodge  corneas? What if your child made a habit of gouging their eyes out or chewing on their arms? What if the side effects of the medications the Dr.’s prescribed for these behaviors made you feel like your child was not living at all?  If, like me, you’re curious about this issue, check out these links….

New York magazine did a story on the Judge Rotenberg Center prompted by the incident with the student in the video cited above, Andre McCollins. Read the article here –

http://nymag.com/news/features/andre-mccollins-rotenberg-center-2012-9/index1.html

In response to a television news story about the use of electric shock devices at the JRC (Judge Rotenberg Center), the school made an interesting point – “the notion that because a treatment involves causing the patient to experience pain, it therefore is equivalent to torture does not make sense. By that standard surgery and dentistry would also qualify as torture and should be banned as well.” See the school’s full response –

http://dotnet.judgerc.org/Documents/judgercdocs/EmailtoMinton.pdf

And finally, on the other side of the argument, is the testimony of parents who support the correct use of the treatment. Read more –

https://www.washingtonpost.com/posteverything/wp/2014/06/24/the-fda-may-ban-the-treatment-keeping-our-daughter-alive/

Now back to the objections with Autism Speaks…

What I don’t know is whether Autism Speaks allowed JRC to recruit students before or after they stopped using this method as part of a plan for new students. The article states that, “Since 2009, the New York State Board of Regents has banned the use of the shock device on any new students from New York, and last fall Massachusetts prohibited the use of shocks for all new students.” What seems clear is that some parents with children who have a history of self-harm and aggression feel they have exhausted all other resources. For them, JRC seems to have given them a solution.

However, allowing JRC to recruit during their fundraising walks is only one objection of the boycotters.

The question I can’t seem to find a simple answer to is how the massive funding Autism Speaks raises is specifically used. I’m not an accountant so I can’t seem to reconcile the numbers that the boycotters post and the financial statements from Autism Speaks. Maybe you can. Here’s the link to the statement from last year published by their auditors –

https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf

Yes, it does seem as though they spend an inordinate amount of money on their salaries. And on research. I think to most Americans, research in connection with a medical condition can only be good. But the question is, to what end? Bob Wright said in his talk at Elmira College on Thursday evening, that the focus was on, “not a cure so much as treatments.” The organization has invested a large amount of money into their ‘MSSING’ project. Not only am I not an accountant, I’m not a scientist. So I don’t fully understand genomes. Here’s the simplest definition genomes from the NIH website… “A genome is an organism’s complete set of DNA, including all of its genes. Each genome contains all of the information needed to build and maintain that organism. In humans, a copy of the entire genome—more than 3 billion DNA base pairs—is contained in all cells that have a nucleus.”

Will this research help the millions of kids, adults, and families dealing with Autism?  It would certainly help to know if a child has Autism during pregnancy if it meant they would get early treatment. Because I am a special education teacher, I can say from experience that early identification and treatment hold great potential for children with Autism. What else might research accomplish? One thing that has puzzled me in recent years is that we rarely see kids with Down Syndrome anymore. What happened to them? ABC News reported, “An estimated 92 percent of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to research reviewed by Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston”. Is that something that research will bring about? That seems pretty awful – that this generation is raising money to fund research so that there will be fewer children born with Autism because more mothers-to-be decide to abort. That said, I’m also not the parent of a child with Autism, or any other developmental disability. As a special ed. teacher, I have the same benefits of a grandparent. I get to know and love these children 25 hours a week but then I put them on the bus and go home to a quiet house and time to myself. To me these children are like treasures – as they learn to discover the world and their ability to function in it, they are joyful and proud. And to participate in it is such a privilege.  So I come back to the question of – research to what end?

And now my question to families – is raising a child with Autism a tragic burden? Having worked with so many of these families over the years, I recognize that it takes a loving, resourceful, and committed person/family to raise a child with Autism. But there are some things in life that are both a burden and a blessing, aren’t there? If we want to prepare families for life with a child with Autism, they need to know about both parts. And they need to have all of the resources and support we can provide. Could Autism Speaks provide more? Yes, and I hope they will hear the voices of families asking for that.

In conclusion, I’m grateful for the awareness that has been generated by Autism Speaks, although watching the videos the other night at the lecture made me a little apprehensive about the thinly veiled grandstanding. Personally, I wouldn’t donate money unless there was a shift in priorities and more forthcoming disclosure about the ultimate goals of research. But I also hope that people who want to help support people and families of those with Autism don’t turn away from that desire because they don’t like the direction that Autism Speaks is going. The good news is that there are so many more ways to get involved besides pledging and walking.

Let’s hear what you think!

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2 thoughts on “For Whom Autism Speaks

  1. I don’t know anything about this topic, but your well-written article certainly makes me want to learn more. Thanks for the resources!

  2. Thank you for your post. Reading you is a pleasure!! Also, I appreciate your taking the time to review both sides of this very controversial issue. So… my two cents:

    My daughter was diagnosed with PDD-NOS almost four years ago. Now she’d be given an autism diagnosis. I’ve said to my friends that what she lives with is “pure” autism. She doesn’t show signs of clinical anxiety, AHDH or OCD. She doesn’t have epilepsy or GI issues. She does have a considerable delay in the development of her communication skills. She would throw tantrums (or maybe meltdowns) that would last hours. These tantrums, however, decreased gradually as her speech increased. She did hit herself at some point (we have pictures of her as a baby with large bruises on her forehead from hitting the rails on her crib), but that’s completely gone. She has sensory issues, and though that presents its own challenges, we got very lucky in that she’s hyposensitive to touch. Which means that, instead of feeling pain when we touch her, she craves pressure and loves bear hugs. She did have very serious problems sleeping, just like her brother (who’s not autistic), which translated into her sleeping ~7 h/day when she was supposed to sleep 18-20. We started sleep training when she was like 6 months old and are very strict with sleep routine. Now, both she and her brother are able to fall asleep by themselves and sleep through the night.

    That is not to say that life is easy. Our social life is pretty limited, having a strict sleep routine means very few dinner parties, even at our home. We rarely travel, and haven’t traveled with her anywhere that requires flying since we moved to NYS five years ago. That also means most members of our families have never seen her in person. She has bolted and gotten into dangerous situations so going out with her is stressful. Finding a babysitter… yeah. We haven’t had a “date night” or a date anything, really, since she was born. I’ve made serious career decisions based on my family, which meant a complete change of career path and lowering my professional ambitions. For my husband, that means having a career that allows him to work from home and be there when the kids come home from school, even if it would not be his first choice otherwise.

    Even though her development so far gives us hopes for her future, nothing is written in stone. She’s very smart and, at this point, I can see her going to a good college and being good in whatever she wants to do. But I don’t know for sure. Everything can change. Even though I think she could go to a good college, most likely will have some learning disabilities. Social challenges are and will keep increasing, and there is always the likelihood that she could develop anxiety in a few years, depending on her environment (and hormones and whatever else).

    But to answer your question: Is it a tragic burden? No, not at all. I wouldn’t even say that is considerably more difficult raising my autistic daughter than my non-autistic son. Both have different talents and challenges. Both are incredible human beings and our life has been greatly enriched because of them.

    I know some autistic people never develop oral communication skills. I know some show very serious challenging behaviors that can be dangerous for themselves or others. I know some will never be able to live independently and will always need assistance for even the most basic self-care activities.

    The internet and AAC have opened important communication avenues for autistic adults. There are bloggers, both autistic people who could “pass” for non-autistic, and those who would be deemed “low functioning” that now can write about their lives and thoughts. And none of the bloggers would rather be dead. None of them considers his or her life a waste. And they’re very much against genetic research that could end up meaning abortion of fetuses carrying autism genes.

    I am not a geneticist, but did my PhD in biomedical research, so have taken several courses in genetics and worked in a very good genetics lab. I truly don’t believe there’s much benefit to be gained from genetic research at this point. It is extremely tricky in that you have the gene, but that doesn’t mean you’ll have whatever it causes. The gene has to be used (transcription) and then a protein has to be made (translation). Then, there’s epigenetics—the possibility that a gene is “silenced” so, for all intended purposes, is as if it wasn’t there. What is on the genes doesn’t necessarily show on a person. Even BRCA1 or BRCA2 gene mutation don’t guarantee a person will develop mammary or ovarian cancer.

    For autism, there are hundreds of genes suspected of being involved. And a set of genes (say having A, B, and C) might have a different effect on one person than in another. Researchers have found that, if you compare two autistic people with similar traits, their genetic makeup most likely will be very different. I have been involved in research involving one or two genes. That type of research takes years, because you need to determine what the gene actually does, and is possible that more than one gene produces the same result. This is expected in traits that are crucial for the individual or species survival. Then, two genes might cancel each other, or might magnify each other’s effect. The complexity is magnified with each additional gene you add to the mix. The effect might depend on the moment at which the gene was “on” and having a gene doesn’t tell you the extent of the effect. If you have genes to be tall, that doesn’t tell you if you’ll be 6 or 7 feet tall. With autism, that doesn’t tell you how intense anxiety or sensory issues or communication delays will be. It’s all guess work.

    Another thing that bothers me, as a researcher, is that some of these genetic studies are based on families where one of the children is autistic, but siblings and parents are not. But… who determined that? Both Asperger and Kenner saw that the parents of their patients tended to be a bit “odd” themselves. This is still true today. As far as I see, researchers rely on parent reports of their own neurology. But the likelihood that many in the “non-autistic” population in these studies actually has autism is, to me, very large, and from what I’ve been reading, there is no practical way to make sure. Performing a diagnostic evaluation of all parents and siblings would cost an immense amount of money and time. So… these studies have serious flaws, in my opinion.

    But even if research was unflawed and you could do get good results in the short term: what do you do with that information? You cannot start doing early intervention on a fetus or a one-month-old baby. Would you do gene therapy? That’s extremely difficult and probably dangerous. There would be no (ethical) way to test what that intervention would cause in the long run. Or, like the autistic activists fear, would fetuses with autistic genes be aborted? What would be the cost to our species? I am with Temple Grandin who said “I feel very strongly that if you got rid of all of the autistic genetics you’re not going to have any scientists. There’d be no computer people. You’d lose a lot of artists and musicians. There’d be a horrible price to pay.”

    I went off on a tangent, but in relation to Autism Speaks: I have read many books and blogs written by autistic people. I have read the “calls to action” and the videos from Autism Speaks, plus results from research funded by them. A year after my daughter was diagnosed we did “light it up blue.” But now, I’m very much a part of the boycott. I think researching causes and cures (and yes a “cure” it is still a big part of Autism Speaks mission… that conference you went to was, after all, called “21st Century Cures”) don’t really get us anywhere. There are autistic people right here, right now, who need services and therapy. Who need programs for inclusion into their communities and who need help in different areas in order to live a fulfilling life. So I prefer to listen to autistic people and give money to organizations that provide the services, therapies, programs autistic people need.

    *Based on the comments of autistic people and neurodiversity advocates, I use “non-autistic” instead of “neurotypical.” Neurotypical would imply absence of any neurodivergence, and that covers a wide range of conditions, from dyslexia to anxiety and giftedness. A true neurotypical would be a rare finding 😉

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