Monday, November 25, 2013

THIS Is Autism, Conor's Autism Reality, Self Injurious Behavior



Suzanne Wright's recent honest and courageous statements in support of a National Autism Plan in the United States has attracted the wrath of Neurodiversity cult members and they will not relent. All the usual suspects  have been voicing their irrational outrage Emily Willingham, Shannon des Roches Rosa, John Robison etc.  In their modern version of the "Cold Mothers Cause Autism" non evidence based, fantasy, attack on parents that caused so much pain they condemn parents and family members for telling the world the unspeakable truths about autism: autism is a disorder, or group of disorders, harmful disorders that can inflict pain and suffering on those who suffer from them.  Following is a a comment and set of pictures I posted in May 26, 2012.  They show my son's joy turning to pain in a flash on the swings of his old grade school.  My Canon camera was set on "sports" mode to show several action shots in sequence and captured this harsh autism reality ... the kind of autism reality that you will not see on "feel good about autism" group sites and blogs.

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.









8 comments:

Anonymous said...

There seems to be a group of bloggers out there whose kids are barely on the spectrum so naturally they are just fine with autism and immediately critcize anyone who speaks of autism in any other way other than what they experience day in and day out. I am also convincd some of these parents are just narcissistic assholes who love to hear themselves ramble on and thrive on receiving praise from the gullible minions who follow them. Emily W. and Jessica Wilson are the two top dogs but there are many others out there unfortunately.

What I fail to understand is how people like Shannon Rosa and others like her with severe kids refuse to put out there the difficulties they face with severe autism. They would be more believable and likeable if they would just be honest. Right now they just come across as liars or total idiots in denial.

You Harold, are one of the few who clearly love your child but are very honest about how autism affects him and the family. Thanks for that! It helps many more parents than the fantasy stories these other parents spew out on a daily basis.

Roger Kulp said...

I see these pictures,and it looks to me like Conor is having a seizure,because it looks like it comes on all of a sudden.My self injury used to be caused by seizures,until I found out the cause,and a way to treat it.

You say Conor is intellectually disabled,but is he able to describe what kind of symptoms he has,how he feels?I know when I had episodes of self-injury,not only could I not control what I was doing,but they always started with two symptoms,a sharp jolt like an electric shock that went through my brain,and the feeling something snapped in my brain,like a stretched rubber band,both at the same time.If Conor can tell you about symptoms,these might be ones to compare them to.

Conor looks as if there is something very painful going on inside his brain.Only someone who has been through it can really relate to that.

Seizures do not always have to be acute and life threatening.Because of your links,and a few past blog posts,you do seem to know about how seizures can cause self injury.

Anonymous said...


Harold,
I doubt that anyone from the
Neurodiversity cult will ever read your blog and if they do then they would say that Conor was an exception to the rule.
There are cancer, stroke
and even Alzheimer’s cults that say their illness made them better people.
We are wasting time trying to battle those that will never understand.

farmwifetwo said...

It's never a waste of time. I have removed an online friend from our sphere because she found "neurodiversity"... there's another who's "aspie" kid doesn't want a "cure".

I don't sympathize with them b/c my eldest went from mild non-verbal PDD to "normalish" by Gr 9 and is in the Univ/academic stream getting A's without support. They started WAY ahead of us. If he should lose his dx over the V... no problems.

#2 - is on the mod/severe/level 2 (per his Ped) end of the spectrum. We'll know exactly where next month when we got for our drug trial assessment. Yes, he's no longer ID, but academics still lag (except reading), speech is still poor, adaptive functioning is in the preschool range, the autism is frustrating, and he'd love a cure. He's absolutely peeved that his bro can do things he cannot and he knows it.

I'm hoping with the V we finally remove the "normal" crowd... even if that includes mine who I refuse to let use "autism" as an excuse, crutch, way of being etc.

Anonymous said...

@Anon 10:17: I think some of them read Harold's blog since they are so self absorbed they no doubt want to know everything that is written about them.
I also think they would say Conor's seizures and self injury are fine and that's just the way he is so let him be. The Neurodiverse cult seems full of clueless and totally mentally unstable people.

Anonymous said...

Harold,

The part where your say
"for personal reasons "

Major accomplishment!
Not easy to do even with typical kids.

Keep blogging!!

Anonymous said...

I see that Kristina Chew and her spouse have quit their jobs as college professors and are moving to the same location in the Bay area to join the other band of judgemental jerks...De Roches Rosa, Emily, Liz Ditz, Jenny Alice and others. It's disturbing that they are all congregating in the exact same area. Maybe they are starting their own west coast branch of the Neuro. cult.

usethebrains godgiveyou said...

I had to come back and find this. This post haunts me...it really does. You have captured something here to show how immediately "something" takes over Conor's face/feeling/mind...like Roger says. Paul Whitely (Questioning Answers) had a twee today that made me think of this. It linked to this paper: http://scienceblog.com/70071/biostatistics-approach-yields-new-clues-to-roots-of-autism/ where they speak to calcium ion channels and epilepsy in regards to autism.

Science is always one for "proof", and parents are often ignored. These pictures are hard to ignore.