July 2, 2011

Have You Ever Cured Self-Injury in an Autistic Person?

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Have You Ever Cured Chronic Self-Injurious Behavior in an Autistic Person?

That’s all I want to ask experts in the field of autism and self-injurious behaviors. You know the type I’m talking about: People profiled on books and described as “emeritus professors,” “administrators”, “directors” and “recipients” of some prize named after someone and ending with the name of a University. Yep, these are THE people who are leading the way in the field of autism and self-injurious behavior. It’s unclear exactly where they’re going, but apparently, it’s in circles, as illuminated in the unbelievable amount of regurgitated studies they love to author, or co-author. You can’t blame them. These are busy experts. They’re working on their 5th PH.D.; holding 50 administrative positions in 150 federally funded agencies; are sitting or standing scholars at 500 different Universities; and—with what little spare time left— practicing psychology, neurobiology; psychiatry and finally, proclaiming “long-standing interests in autism” with a “focus on” something else to add to their expanding list of amazing accomplishments. The one thing I never see on their list of academic honors ; however, is how many autistics with self-injurious behavior these elusive experts in autism and self-injury, have EVER cured or helped. I want to know. I don't care how many mice you've injected with scolopine. I don't care how many committees you've been on, or how many papers you've published.

Do these experts ever think about actual autistics with SIB? Or are they content spending years “publishing extensively on autism” and living a life dependent on another government grant, while thousands of autistics are still punching their heads, slamming heads into concrete, ripping chunks of hair from heads, poking out eyeballs, chewing off fingers, breaking noses and disfiguring ears.

One expert even brags he has “been involved in human studies of self-injury for over 30 years.” Wow. That's really something. He doesn’t tell us if he’s ever spent a day with an autistic person with self-injury. Or PHYSICALLY helped an autistic with self-injury, just that he’s “been involved”—whatever that means. For all we know, the guy shows up to seminars, says a few words and splits. Look, let me be the first to say this Mr. Expert in autism and SIB: if you’ve been involved in studies of self-injurious behavior for over 30 years and you haven’t presented ONE shred of evidence that your involvement has somehow touched or changed the lives of an autistic person with SIB: Get another profession. Burn your resume. At the very least: Get off your rear and visit a family with an autistic self abusive child. Spend a few days with them. Then go visit another family. And more families. Visit group homes with autistic people suffering from chronic SIB. Spend a weekend at a state institution caring for autistics with SIB. Keep repeating this until you discover something inside the lives of real people living with real autism and self-injurious behavior.

STOP playing with rats, monkeys and mice as if injecting them with names we can't pronounce will magically lead to a cure for SIB in autistic HUMANS.

If you really want to get closer to better treating or even curing SIB BEGIN with a PET or SPECT or fMRI. For example, on days where person is exhibiting extreme SIB, capture and analyze brain function. On days there is NO SIB, do the same thing. Compare and contrast these days. What is going on inside the brain before, during and after SIB? What’s does the brain function look like on non-SIB days?

The idea of comparing and contrasting brain activity on SIB and NON-SIB days is LONG OVERDUE. I have REPEATEDLY asked doctors to do this, but they have no interest, as if severe autism is a hopeless situation. Ironically, studying autistics like my son would bring more insight into the mystery of autism and SIB than 30 years of over-descriptive rambling research papers on SIB. We don’t need another study TELLING us what SIB is. We know what it is. We live with it. We don’t need another study spouting the prevalence of self-injury in autism. We know about 17%-30% of autistic engage in dangerous self-abuse. We want effective TREATMENT. We don’t need another study talking about force dynamics of SIB. We see how hard they hit. We want our children to be set free from this health damaging behavior. We want doctors to care. To identify, target and treat whatever is going haywire in the autistic brain triggering SIB meltdowns. We don’t want psychiatrists to simply guess what drug may help. We want them to look at our children's brain function and invest the time and energy into figuring out what is the best treatment based on individual brain function. We don't want to hear it's too late for older autistics. It's NEVER too late. Miracles happen all the time and God expects us to be PART of that miracle.

We don't want our children's brains examined when they're dead. We want doctors and researchers to examine, analyze and treat the brain function of LIVING autistics with self-injurious behavior, so that 30 more years of research, won’t be for nothing.

Kim Oakley


Autism Mom said...

Well Said!!

MattW said...

I hope I'm not missing the boat here and maybe this blog already knows about functional analysis and self-injury (and if so, I apologize), but I've worked in enough health care settings to know that sometimes people aren't aware of the role of behavior analytic approaches like functional analysis and treatment in working with individuals who engage in self-injury, so here goes:

Many of the behavior analysts I have known have spent years working directly with different people who engage in self-injury. Sometimes to no effect and sometimes successfully treating the self-injury. "Cure" may be a loaded term. And there is certainly a lot of work to be done -- far too many people continue to have untreated self-injury. Still, behavior analysts have been right there with parents, teachers, and caregivers for decades, trying to(and at times succeeding in) find ways to help people with autism and developmental disabilities to not hurt themselves.

For some sumamry information: http://www.jeabjaba.org/jaba/articles/2003/jaba-36-02-0205.pdf

personal injury attorney los angeles said...

Families with children who have developmental disabilities are more likely to experience SIB such as head-banging, and excessive self-rubbing and scratching. Applied behavior analysis is the most common treatment option, but medications also help reduce self-injury in those with autism.

Anonymous said...

Medications and theropy have done NOTHING to help my sons S.I.B in the mean time he has to have his hands held all his waking hours to keep him safe. He has had 6 ear surgerys in 3 months from the damage done by self abuse. I agree look into some other way of treatment this is emotional torture for the parent not to mention the physical pain for these children.

claude catot said...

Dear Kim
My name is Claude. I am the mother of Joaquim, who has High level autism, and also a psychiatrist. In France, there are child psychiatrists who uses a treatment called "packing" to reduce SIB. This means completely wrapping the patient(usually a child with severe SIB)in a first layer of 10 to 15 degrees celsius cold sheets then adding several layers of normal temperature wrapping. The cold sensation lasts less than 30 seconds and is followed by a vasomotor reaction of warmth. This procedure(which is repeated several times) has frenquently but not in all cases produced reduction or suppression of SIB.
Some parent associations want to ban this treatment which they consider to be physical abuse. This is very unfortunate because there are indeed cases which are beyond CBT +/- neuroleptics. Pierre Delion, a renowned child psychiatrist in France does research on and practises packing in Lille, France.
Please feel free to contact me at claude.catot@laposte.net.
Sincerely yours

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