Saturday, May 26, 2012

Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash

I have never accepted, and have in fact been openly contemptuous of, the view that autism is a joy, an alternative, even superior way of thinking.   My son's autistic disorder diagnosis accurately describes autism as it really is ...  a disorder, one that  impairs the lives of those, like my son Conor, who suffer from that disorder.  In my view those who promote autism as anything other than what is, who portray autism as a feel good alternative way of thinking delude themselves and ill informed members of the public. In societies where the public participates in a democratic process to determine what services and interventions will be made available to help those in need the light and fluffy portrayals of autism do a serious disservice to those with severe autistic disorders who require help in living and enjoying their  lives.

In the picture above, and most that follow these comments, my son is shown enjoying time on the swings at the neighborhood grade school he attended several years ago.  We arrived early and no one else was present on the grounds. There was no sensory overload.  It was overcast and mildly cool but very pleasant. We made no demands on Conor and let him enjoy his time on the swings which, for the most part, he did.  We were there only  a few minutes though when, quite suddenly and with no discernible external causal factors, no external stress factors, he began hitting himself on the head.  There was no apparent internal cause for his sudden shift to self injurious behavior either.  He had enjoyed breakfast and had visited our washroom facilities for personal reasons.  He showed no indication of discomfort whatsoever prior to switching suddenly from enjoying the swings to self injury. 

Conor's sudden shift from enjoying the swings to self injury suprised me only because it was so sudden and occurred while he was thoroughly enjoying himself.   After 16 years of 24/7 caring for my son I have no idea what caused this specific outburst of Self Injurious Behavior (SIB) any more than most similar incidents where there were no obvious external or internal causes.  What I do believe, and believe fully, is that such sudden SIB's are a result of his neurological disorder, his autistic disorder.  I don' t give a darn whether any autism experts accept my anecdotal evidence or not.  Conor's SIB is part of his autistic disorder.  The many well intentioned autism researchers who gathered in Toronto for the IMFAR convention might wish to consider spending more of their time, resources and intellects reseaching Self Injurious Behavior in persons with Autistic Disorder or Autism Spectrum Disorder as it will be officially known after May 2013.


farmwifetwo said...

Russ does that too. He'll be playing along and then for whatever reason... and yes, some may be sensory but the one's that aren't come without warning... he'll just grind his left hand with his right. The pinky and ring fingers are twisted because of it.

Every so often (every 2 to 3 mths) we have full "lag" if things have been very different. In our house it's rare. The last was a few weeks ago and he bit himself (VERY rare) and the table leg (wt???) and screamed. Those I truly believe are the days his head hurts... have you ever read Mercedes Lackey's Valdemar books and the description of their "gifts" and when the nerves get over sensitized, I think it describes it perfectly... Then I give him half a dose of children's motrin and it seems to take that extra sensory away. He's not "drugged" but the headache is gone.

It's been extremely hot and very dry here these last couple of weeks. He's barely talking and yesterday didn't want to come in from afternoon recess... We're being lazy today - another 90F+ day - and he's quietly playing. It's really bothering him.

Anonymous said...

Our 17 year old son Sam also has SIB without environmental antecedents. He has a bald spot on his head from hitting himself out of the blue. I agree that there is a need for research in this area. It's heart braking watching my son during SIB and even more heart braking know ing that other young men and women are having similar behavior. I wonder what you think of my paraphrasing of this researcher/author's theory

According to Constantino (2011)......

Autistic characteristics such as attention to detail are adaptive, with mild phenotypic expression, but are problematic when severely expressed or in interaction with other genetic or environmental factors (Constantino, 2011).

Constantino, J. N. (2011). The quantitative nature of autistic social impairment. Pediatric Research, 69(5 Pt 2), 55R-62R.

Norah Johnson

Science Refinery said...

I agree with you that SIB is an understudied area. While it's clearly not 100% effective for everyone, ABA therapy is the best treatment for it that I'm aware of.

Anonymous said...


Autism Mom said...

So Sorry This Happened To Conor! It is an all to familiar scenario for so many of our kids.

A friend of ours son had always been self-injurious with major slaps, 100's of times to his own face. It wasn't until he had a grand mal seizure at school that it was discovered an anti-seizure medication would remedy a majority of this behavior. There are break-through moments but that is the case with epilepsy, even while on medication.

Due to my history of chronic migraine since puberty and most recent diagnosis of trigeminal neuralgia I can attest to sudden and excruciating pain to the head that would cause one to "self-medicate" by forceful means. With young men like my son it could be cluster headache but then again that is a guess and isn't that what we are left with always in the world of non-verbal autism.

It stands to reason that having a neurological condition of autism a person would be susceptible to many other brain disorders. The question is which one(s)and are they treatable.

Yes, Much Research In This Area Is Needed.

Anonymous said...

Our SIB experience (ASD son, now 8) has been of two types: 1) self pinching, on the arms primarily, when frustrated (and he can voice his frustration, e.g.:” I still want to see TV.”) and 2) those without any visible trigger which was leg slapping. The pinching we eliminated with ABA teaching replacement behaviour and tolerance for “no” answers (this effort took near a year and was vital since not all times in the world is the answer “yes” and in terms of practicality our son had to learn how to self regulate).

The SIB without visible or understandable cause/trigger (by us or any Dr/expert I have met) lasted for a short period (about three months) when he was 5, went away, reoccurred at 7, and went away again. By the age of 7 our son had sufficient verbal skills to answer questions (far from reciprocity or conversational, but sufficient enough to ask for what he wants and reply to single subject questions). I asked him why he hit himself (some behaviorists may see this as a bad strategy, i.e.: bring attention to negative behavior, but this behavior is not attention seeking and he has the cognizant skills to answer). Our son said “I do not know, I just do.” Currently, and for a year since we have not seen any SIB. Given our experience it looks to me, SIB, without triggers, are a different matter than those with triggers, the no trigger type, I think, are solely internally driven and directly related to ASD – what that relationship is and effective treatment needed are the questions to answer.

Anonymous said...

I am a very careful observer - and there are times when SIB kicks in with no, none, zero antecedant. Same thing with aggression. I really think this is akin to seizures...

Shannon said...

My daughter has behavioral issues that are very similar to Conor's, and this is after two years of in-office behavior therapy and a very intensive treatment that took four months. She bites, scratches, screams and throws things. Any or all of those behaviors may be preceded by frustration or have to discernible cause at all. She has deeply callused areas on her hand and wrist from the biting and I'm afraid she may end up with permanent nerve damage.

People who promote autism as 'just a different way of thinking', well, to be honest, they piss me off. It makes me even angrier that so many people are buying into it. I've had people actually post to me online that I 'really don't have anything to be upset about; s/he knows someone whose child is autistic and that kid is in college and doing well'. If that's the way it is for one person, that's fantastic, but it's not like that for every child on the spectrum. Some of them are going to need intensive supervision and a lifetime of care. I'm reminded of this every time my daughter lashes out with her nails and rips bloody holes in my arms; that she is going to be among those who will never be able to care for herself. She and others like her could definitely be harmed by the 'different way of thinking' myth.
Just letting you know you're not alone.

Usethebrains Godgiveyou said...

My problem is the opposite. I resent my son being labelled autistic. To me, high functioning autism and low functioning autism are two different entities.He relates to the label because of Temple Grandin, John Robison, and Ari: the Holy trinity of autism. And I think it's wonderful he looks up to those people. They are very empowered, and have worked for the better to change things for kids like my son. It's not an easy life. Probably even more difficult for those in between.

But I have seen very high functioning people refer to themselves as "low functioning".(They, in fact, were describing my life. Did you know I am a low functioning autistic?) That, to me, is why I no longer follow the neurodiversity movement. It is almost as though they have never met a truly low functioning person in their lives. I'll probably be skinned alive for this.

I wrote a story, "The Joy of Ben", to show my family what a smart-ash he was. It's a funny story. I've never witnessed Ben being self-destructive before my eyes. It would hurt.