Father Knows Best? No, FDA-Father Knows Best
Paul E. Peterson writes at the WSJ that the FDA is trying to take away his autistic son's treatment on ideological grounds:
Though they have never met my son David and have no information about his specific diagnosis or care, bureaucrats at the Food and Drug Administration are endangering his life by proposing to stop the one treatment that has allowed him to lead a happy life that includes learning, socializing and having loving relationships with his family.David is one of a small percentage of individuals with autism and mental disabilities who engages in life-threatening self-injurious behaviors, including shoving his hands down his throat and banging his head with such force as to permanently damage his ear. For the past 10 years he has been dissuaded from such activity by means of an abundance of rewards if he controls his self-harming behavior and an unpleasant, but harmless, two-second skin shock via an electronic stimulus device, or ESD, if he attempts self-injury.
While the device has been used effectively for many years with individuals like David at the Judge Rotenberg Educational Center, a residential special-needs school in Canton, Mass., the FDA is trying to ban it at the behest of ideologically driven advocacy groups such as the Disability Law Center in Massachusetts, whose executive director calls the therapy "horrible torture."
...The FDA also asserts that the skin shock constitutes physical and psychological harm. My wife and I have both experienced an ESD application. The experience is disagreeable, but not nearly as painful as a paper cut to the finger. Nor have we detected any sign of psychological damage to our son. Quite the contrary: David loves to visit his family, and he is no less happy to return to his friends in the residence where he lives.
...The FDA asserts that skin shocks are no longer necessary but it provides no documentation that drugs are effective for people like my son. In the past, drug therapy aggravated David's self-injurious behavior. The use of psychotropic drugs also poses multiple risks of physical and psychological side effects. By contrast, skin shocks have no demonstrated side effects beyond a temporary redness to the skin that usually disappears within minutes.
...Before arriving at his special-needs school, David's attempts at self-injury were continuous unless he was physically constrained. Today, he is in excellent physical health, and he has made striking gains in his sociability, curiosity and ability to carry out basic self-care. He participates in community events and visits his family about once a month. His attempts at self-injury average once a week, a low level he has sustained for the past several years.
Our son, who is now 45 years old, is enjoying a quality of life that my wife and I did not believe was possible before he had access to this treatment. The FDA's proposal would place his health--and life--at risk. The alternative treatment plan for him is physical restraints and mind-numbing drugs. For the sake of our son and others like him who have benefited from an electronic stimulus device, the FDA must withdraw its proposed regulation.
Here's the FDA press release.
And here's the thing. People are individuals. Drugs and devices are tested on the masses, but sometimes, a drug or device that isn't such a good idea for one person is a lifesaver for another.
For example, I can't get Betahistine (Serc) in this country. It is the one drug -- sans any real side effects for me -- that I can take to get across town without getting drowsy and without getting the least bit carsick.
I only learned this because a friend had to take it for vertigo -- a friend who lives in another country. I was so completely desperate to be able to go places by car without getting motion-sick that I ordered it and tried it.
It's a miraculous help. I can go long distances in traffic and make it across town when, before, I couldn't even go four miles in traffic without getting at least somewhat nauseated and maybe worse.
However, because the studies on this were poor, I can't get it here; I have to order this drug from foreign countries on eBay. Thanks, FDA!
This is annoying, lemme tell you -- but imagine if the one thing stopping your 45-year-old autistic son from doing serious physical harm to himself was something the FDA decided to put a kibosh on.
Parents don't have a good record at understanding, preventing and treating self-injurious behavior in the autistic. The FDA does a piss poor job at it too---but parents don't do better. In fact parents are responsible for consistently supporting autism treatment centers that have been proven to be torturing the disabled, incompetent, pseudo-scientific or just plain idiotic. The feds for all their faults has been good at shutting these shit hole places down despite parent protests. The Judge Rotenberg Educational Center is most likely one of these places. I suspect it because they partner with Autism Speaks.
I don't believe this mini shock treatment works. The reason is the severely autistic often react positively to things that are actually harming them. They also often react extremely negatively to things that are actual beneficial to them and alleviate their symptoms . Unfortunately when it comes to self-injurious behavior we don't know how to treat it in the autistic.
Ppen at June 27, 2016 11:36 PM
As always, I am amazed that motion sickness can affect you so profoundly, yet you still function so well. I'm happy you don't suffer while walking, or turning your head suddenly; in May of '15 I got vertigo, likely from a change in how a migraine attacks me, and ended up in the ER.
Ugh.
Radwaste at June 28, 2016 1:27 AM
So sorry to hear that, Rad. It's something of a mystery why this happens to me, though a Kaiser doctor says it isn't helped by my staying home working on my book. My vestibular system, basically, may have reverted to that of a person who's never been in an automobile. A theory, but an interesting one, from this doctor.
It is, however, completely amazing that I am helped by this drug. Unlike The Patch (scopolamine), it does not make me drowsy/bleary/unable to think. There's the tiniest grumbly in my stomach at first but now I don't think I even feel that. And we made it all the way downtown in LA traffic the other night and I didn't get sick.
Amy Alkon at June 28, 2016 5:54 AM
Ppen, you have a point, but in this case I think we have to recognize that results matter.
So this shock device doesn't sound all that much different from a bunch of electro-stim devices that are used for pain relief and muscle toning (and, ahem, other purposes). And the thing is, that type of device isn't difficult to build. I could build one from a diagram. An FDA ban would not be effective; it would just cause a cottage industry to pop up.
Cousin Dave at June 28, 2016 6:47 AM
By "incalculable" I meant "incalculably high amount of safety"...
...Not just for the sober driving, but for the clear head a the top of a scuffle to say "Relax, Dude... He didn't mean it that way."
Crid at June 28, 2016 10:10 AM
Fuckballs... Wrong comment stack.
Delete or ignore, you guys were doing great work in here.
Carry on... Tell no one you saw me.
Crid at June 28, 2016 10:58 AM
I came in late (obviously), but—
> So this shock device doesn't
> sound all that much different
> from a bunch of electro-stim
> devices that are used for pain
> relief and muscle toning (and,
> ahem, other purposes).
Doesn't the fact that it's another person electro-ing the stim vacate the comparison?
Crid at June 28, 2016 11:25 AM
Papercuts hurt like hell. There's a wide gap between mild annoyance and a papercut.
Katrina at June 28, 2016 11:41 AM
So sorry to hear about this situation. He and his son are not going to be happy. The "government" rules are crazy.
My Mom was in the hospital, was uncomfortable and moving around so I buzzed for the nurse and went to put up both side rails of her bed. NOPE! That was considered to be "restraining" her against her wishes. We had to put her table there instead. Stupid.
On a more serious Major Major note. When we had to place my daughter into special needs care the facilities that took care of kids her size would not take her due to her age. The facilities that took kids her age would not take her due to her size. Horrible. Finally a social worker took pity on her/us and found us a place that worked out well.
I wish them well but ...
Bob in Texas at June 28, 2016 11:49 AM
"Doesn't the fact that it's another person electro-ing the stim vacate the comparison?"
I do assume it's another person doing it, although the details of that are not clear. (Is it a device that he wears? Who is administering it? Does he do it himself? If not, is it the parents or a medical person? Is that person around him all the time? etc.) Given his stated age and when the treatment began, it appears that he was an adult and gave his consent, although it's possible that the parents have legal guardianship. If he knowingly gave consent to the treatment, and was competent to do so, I have no problem with it. If he didn't or wasn't, yeah, it gets sticky there. (Although... is it worse than psychotropic drugs?) My other comment wasn't necessarily to dismiss the severity of the treatment -- I was just pointing out that these types of devices aren't hard to make, and that an FDA ban won't have much effect on availability.
Cousin Dave at June 28, 2016 12:17 PM
> Although... is it worse than
> psychotropic drugs?
Please don't poison the argument with sensible rhetoric.
Crid at June 28, 2016 12:32 PM
My neighbors got something like that for their dog.
Can't help but wonder about the quality of life for someone who has to be reduced to the level of a dog to modify his behavior.
Conan the Grammarian at June 28, 2016 3:04 PM
My Mom was in the hospital, was uncomfortable and moving around so I buzzed for the nurse and went to put up both side rails of her bed. NOPE! That was considered to be "restraining" her against her wishes. We had to put her table there instead. Stupid.
Bob, I encountered this same stupid-think a couple of years ago with my mom. She had a seizure and fell out of the bed at the rehab hospital. I asked why the rails weren't up on her bed to prevent the fall and was told that it was considered a form of restraint, and it's illegal in California. But oddly enough when I was in the hospital (also in California) after back surgery, the rails were up on my bed. So I don't understand what the difference was. The rails on hospital beds are their to protect against falls, or so I foolishly thought.
sara at June 28, 2016 4:13 PM
As a person who works with people with special needs their quality of life generally sucks.
I know a lady, she was labeled retarded back when her parents had her tested in the 60s. I'd say shes autistic.
Lived with her parent until they died, never washed her own hair, never prepared her own meals, picked up her own trash.
Over the last three years shes lost nearly 100 pounds, dropped about two thirds of her meds and now takes a shower without being prompted and knows how to wash her own clothes in a washing machine.
She doesnt understand how to read but has such a great memory she recognizes individual words that were used, like C is for cat, when someone once tried to teach her how to read
She is high functioning enough she might have been able to live on her own had she gotten the proper care and training as a young adult, but now that shes nearly 60 its too late
But even with all the progress she has made, she spends most of her time sitting in a chair bored watching TV because she doesnt know how to entertain herself, and as much as her family loves her and wants to spend time with her she has a very myopic world view and she gets very cranky when the conversation isnt about her
lujlp at June 28, 2016 4:37 PM
I work in the field of providing treatment to individuals with autism who exhibit various sorts of dangerous behavior, including very severe self injury. In the vast majority of cases, effective treatment can be provided without the use of aversives. I have always been an advocate for treating people with autism with humanity and respect.
In very rare situations, less restrictive interventions may be exhausted, and there are no practical, safe options other than careful use of aversives. There are many well done research studies showing the effectiveness of aversive procedures after other options have been tried and failed.
I have never worked at Judge Rotenberg Center, but I have visited their program and know a number of people who do work there. I have differences with some technical details of their treatment procedures, but I cannot say that, in the most extreme cases, we have a better option.
Bureaucrats have many times tried to shut down JRC and have failed, largely because (1) so many families speak on their behalf; and (2) they have lots of data to support the effectiveness of their approach. They don't use aversives with most of their population; only those who engage in very severe behavior and only after less restrictive options have failed. A court order is required before these procedures are implemented.
When the alternative is to let the person cause severe and permanent self harm or to drug the person into a virtual coma (I've see what these look like, and neither is pretty), I believe that there are times in which very carefully managed use of aversives is the least bad option.
David at July 17, 2016 1:15 PM
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