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.

Thursday, November 21, 2013

2013: The Year Of Autism's Grand Error, The DSM5 Autism Spectrum Disorder

Photo by Harold L Doherty

The year 2013 will be remembered as the year the simplified DSM-5 Autism Spectrum Disorder definition was imposed on a very complex and diverse group of disorders and/or symptoms.  Catherine Lord, Susan Swedo and other members of the DSM-5 committee responsible for the definition change simply ignored criticisms of their proposals and pushed ahead because, in their minds, they know better than their critics.

It would be one thing if the DSM5 Autism Spectrum Disorder critics were simply parents like me. As mere irrational parents we had no standing, no credibility, no respect in the eyes of the DSM5 committee members and our views did not have to be considered.  What was amazing about the incredible stubbornness of the DSM5 committee members in pushing ahead though was the identity of some of the professional critics and the serious challenges that were dismissed without any serious response by the DSM5 team. Ritvo, Volkmar, Waterhouse,  are only a small sampling of the names of persons with important roles in the development of knowledge of, and thinking about, autism spectrum disorders who offered  criticisms of the DSM5 Autism Spectrum Disorder: 

"Abandoning criteria that have been in worldwide use for decades for new ones that may eliminate from 9% (their data) to 40% (prior reports) of previously diagnosed patients is neither scientifically nor morally justified."

- Commentary on the Application of DSM-5 Criteria for Autism Spectrum Disorder Edward R. Ritvo, M.D.; Riva Ariella Ritvo, Ph.D. Am J Psychiatry 2013;170:444a-445. doi:10.1176/appi.ajp.2013.12101376

Dr. Fred Volkmar created considerable awareness of the DSM5 ASD changes and their likely impacts with a  preliminary study reported on in well known New York Times article in early 2013.  In a May 2013 abstract he also noted that:

"While some of the changes employed in the new DSM-5 approach are praiseworthy, others are much more complicated. There appears to be some significant potential for diagnostic change, essentially as – despite what might conceptually appear to be a broader tent of the autism spectrum – the DSM-5 approach seems likely to result in a narrower concept. This raises some concern about the impact on services for children in need as well as for comparison with previous research. Sadly we are, to a considerable extent, still in the dark on the extent of this change. Although the focus on standardized diagnostic instruments has some important advantages in the real world of clinics and schools, clinicians will not have had the opportunity to undertake extensive training. In some cases the new (but relatively unclear) social communication disorder concept may be invoked, but the lack of research on this putative condition poses other problems and its use might well be taken as an excuse to avoid service provision."

Dr. Lynn Waterhouse worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism and is the author of Rethinking Autism: Variation and Complexity (2012) whose book was reviewed on the website by several learned commentators including Dr. Peter Szatmari who noted that "Waterhouse squarely tackles the "elephant in the room" in autism research; the complex heterogeneity seen at all levels of analysis.  The argument is sustained, learned and comprehensive. We shall all be dealing with this challenge for decades.

Dr. Waterhouse subsequently commented in an email to DSM-5 critic Dr. Allen Frances which he included in one of his Psychology Today commentaries on the DSM-5. In her email, after reviewing some of the reports and studies crtiquing the DSM-5's New Autism Spectrum Disorder Dr. Waterhouse stated:

"These and other independent research groups have reported that DSM-5 ASD criteria will significantly reduce the number of ASD diagnoses. Their findings counter Dr. Lord's claim that DSM-5 ASD criteria will not change the number of people diagnosed. Because nearly all of those excluded from a DSM-5 diagnosis have serious developmental social interaction impairment, they cannot be correctly diagnosed by any of the other DSM-5 childhood disorders, such as Social Communication Disorder or Intellectual Developmental Disorder. These children will need services that will be more difficult to obtain without a DSM-5 diagnosis. Unfortunately, the DSM-5 group has chosen to simply ignore data that don't conform with its beliefs." (Emphasis added, HLD)

The DSM-5 Autism Spectrum Disorder is a mistake, a huge mistake, supported not by research as was perpetually articulated by DSM-5 spokespersons but solely by the preferences and intellectual biases of of the DSM-5 committee team members who pushed the new definition ahead while ignoring contrary studies, criticisms and perspectives offered by MANY learned autism professionals and academics.

2013 is the Year of Autism's Grand Error - the DSM-5 NEW Autism Spectrum Disorder. 

Monday, November 18, 2013

Autism Media Rarity: Pittsburgh Post-Gazette Autism Series Includes Severe Autism And Family Impact

Julia Rendleman/Post-Gazette

Jeffrey Maloney, 19, is comforted by his mother, Lisa, 
during a family outing at the Pittsburgh Zoo & PPG Aquarium.

In a rarity in the mainstream media the Pittsburgh Post-Gazette published an honest, informed article by Mark Roth and Julia Rendleman on the challenges faced by a family with two children on the autism spectrum, one diagnosed as PDD and the other an adult son with severe autism disorder and the impact on the family, the Maloney family,  of caring for them.  The article was the first in a 4 part series on autism disorders run by the Pittsburgh Post-Gazette   called Mysteries of the Mind. The article talks about autism from two sides including the severe autism side and does not shy away from mentioning subjects well known to parents of severely autistic children such as disruptions in routine, metldowns and self injurious behaviors including pinching, head hitting and head banging against walls. The article presents the impact on the family of caring for the two autistic siblings including the impact on the other siblings.  As pointed out in the article there is much public attention paid to very high functioning persons with autism spectrum disorders but very little attention to severe autism disorders or the impact on the families of children with severe autism.  The Post-Gazette feature tries to address this very harmful lack of autism disorder awareness.  

Saturday, November 16, 2013

Neurodiversity Cultists Take Note: My Son Is A Joy; His Autism Is A DISORDER

Conor walking the North Riverfront Trail along the St John River, Fredericton

Many in the Neurodiversity cult, which irrationally embraces and worships the autism segment of the autism disorder diagnosis they sought for themselves, or their children, while discarding the DISORDER component of that label have, once again, attacked parents and other family members who dare to counter their perverse, ill informed ideology with honest depictions of their own kids autism disorders. Suzanne Wright's recent, honest, accurate, depiction of the challenges faced by so many with autism disorders and their families, has sent the autism cultists into what Autism Jabberwocky has called a collective conniption. Among the usual hate filled, knee jerk reactions is the allegation that family members, including parents, who talk honestly about the autism disorders they experience are describing the ND cultists' kids as monsters.  In truth it is only the ND cultists, those who praise autism as an Einstein like gift, who use the term monster in describing their autistic children.  

On this comment I am posting two sets of pictures (1) showing the joy we call Conor and (2) showing some of the harm inflicted by his autism DISORDER .  I have posted most of these pictures before and I don't expect the ND cult mongers who praise and misrepresent autism as a gift to actually pay attention to such evidence. They presume to know more about my son than I do.  For those, however, whose minds have not been frozen and locked forever in the Neurodiversity cult that worships here are these two sets of pictures which showns the realities of life with out son, the joy of Conor and the harm he suffers from his autism DISORDER. I believe the joy pictures speak for themselves.  The harm pictures will include a brief explanatory description.

(1) The Joy  of  Conor 

(2) The Harm of Conor's Autism Disorder

Conor engages in Self Injurious Behavior,
 including biting his hands and wrists. 

Conor has put his hands through glass windows and has to be 
watched closely when he is upset to ensure he does not do so again.

Conor's Self Injurious Behaviors include hitting himself in the head when frustrated/having a meltdown.  The picture above resulted from an incident at 3 am when Conor was hitting himself in the head with considerable force. I tried diversion strategies unsuccessfully and tried to grab his arms to prevent him from injuring himself.  He is much quicker than his old Dad and lunged forward and bit me on the bicep, biting through the skin and into the muscle resulting in the bruise above and calcium buildup. NO he was not trying to injure me, it was an example of what Dr. Sanjay Gupta called Reactive Aggression. 

Conor is very sensitive to noises usually the type of noise rather than the volume.  Some telephones ringing and some cars and motorcycle noises will set him off.  We use mobile phones in our home almost exclusively now because Conor has ripped the cords of our land lines out of the walls so many times. 

Conor, like a substantial number of the 50% of the autism spectrum who also have an intellectual disability also suffers from epileptic seizures. He suffered two grand mal seizures requiring attendance by ambulance at the Emergency room.  He ALSO suffered an adverse reaction to his medication which almost took his life and resulted in 2 weeks in hospital including 6 days in the ICU.  (Thanks again to the wonderful ICU Team at the Chalmers Hospital!)

10 years ago when we lived on Hillcourt Dr. above, just behind the parking lot of the Red Lantern pub marked above on the Google earth map, Conor wandered out of the house unnoticed.  Heather was in Nova Scotia and I answered the phone on a business call.  When the call ended Conor was nowhere to be seen.  After a frantic 911 call I recovered him from the Ultrasound gas station/convenience store on the corner of Main and Fulton above. Conor had crossed the busy parking lot of the Red Lantern Pub and also crossed a busy Saturday afternoon Main St.  Traffic was stopping to avoid hitting him and a good Frederictonian stopped his truck to take him to the Ultramar and alert 911.

I love my son dearly and I owe it to him to speak honestly about the autism disorder which limits his ability to function in this world and limits his life prospects. I will not misrepresent the nature of his autism disorder to make myself feel good.  I will fight all those who do misrepresent autism disorders as gifts. That is a promise I make to all including those at ASAN, TPGA and others who misrepresent autism to the world.  

Friday, November 15, 2013

An Excellent Week For Autism Advocacy! Suzanne Wright Speaks Out and John Elder Robison Resigns

Thank You Suzanne Wright!

It was a good week for reality based autism advocacy for two reasons. First, I was very encouraged by Suzanne Wright's very honest description of the many challenges facing persons with autism disorders and their families in Autism Speaks to Washington - A Call for Action. Second I was very pleased to see John Elder Robison, an extremely high functioning and very successful, free ranging Aspie, who refuses to acknowledge that autism is a disorder that should be cured, resign all his positions with Autism Speaks.  It appears that Autism Speaks may be abandoning its attempts to mollify the Neurodiversity ideologues that have caused so much harm to those with severe autism disorders. Hopefully its fund raising expertise can now be used to encourage the research necessary to help all persons with autism disorders and to develop national autism strategies to implement evidence based autism interventions in the US ... and in Canada.

I encourage everyone who actually cares about helping persons with autism disorders to read Suzanne Wrights powerful article in full.  I am very impressed with her courage in speaking so openly and honestly about the realities faced by many with autism disorders, their families and caregivers:

"Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse. 

These families are not living. 

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7. 

This is autism. 

 Life is lived moment-to-moment. 

In anticipation of the child’s next move. In despair. In fear of the future. 

This is autism. 

On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally. 

Maybe they have been up all night caring for their teenage child who’s having a seizure. 

Maybe they are up yet again changing the sheets because there’s been another bed wetting accident. 

Maybe their child has been trying to bite them or themselves. 

Maybe they can’t afford the trip to a doctor specializing in autism. 

Maybe there is a waiting-list for ABA, speech and OT. 

Maybe their insurance won’t pay. 

Maybe they don’t have the money to pay a special lawyer to fight for school services. 

This is autism.

If any of this sounds familiar, you know autism. And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan."

I have a 17 year old son who suffers from severe autism disorder who has hit himself in the head repeatedly, bitten his hands repeatedly day in and day out until he was removed from the mainstream classroom and received his ABA based instruction (for which I and other parents had to fight) in a separate learning environment.  He has put his hand through glass windows.  He suffers from seizures and almost died in an adverse reaction to his previous seizure medication (as determined by the ICU team that saved his life at our local hospital).  He has suffered serious meltdowns as a result of obsessive behaviors. Disruptions of routines can also be extremely difficult.  He once left our home unnoticed and wandered across a very busy street oblivious to car traffic dangers until a good citizen of Fredericton stopped and took him to a nearby Ultramar service station/convenience store, called 911 and waited until I arrived to bring my son home.  The consequences could have been much different and I have never lost sight of what might have been.  24/7 care is absolutely the rule in our house. 

I am all too familiar with Suzanne Wright's list. I know autism.  I believe fervently that researchers should be focusing on finding cures and treatments for all autism disorders not the meaningless "remediation" advocated by the very high functioning J E Robison who opposes the very concept of curing autism.  I am very happy to see that Mr. Robison has abandoned his attempt to persuade Autism Speaks to stop seeking  real understanding of autism, to stop seeking treatments and cures for autism.  Above all Mr Robison's departure may help Autism Speaks find its way to once again speaking honestly about the challenges facing all persons with autism disorders including the 50% on the autism spectrum identified by the World Health Organization as also suffering from an intellectual disability.

Thank You Suzanne Wright!

Wednesday, November 13, 2013

Autism Research Progress To Date In Two Words: Lovaas, ABA

Research to date benefiting persons suffering from autism disorders can be summed up in two words: Lovaas, ABA. The work done by Dr. Ivar Lovaas has been applied successfully for decades as reported by the US Surgeon General's office (1999) and by the American Academy of Pediatrics (2007), reaffirmed (2010):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

Sunday, November 10, 2013

Great Autism News: 15 Year Old Boy With Autism And Intellectual Disability Found Safe

As the father of a 17 year old young man with severe autism, intellectual disability and epileptic seizures I am very happy to read that 15 year old autistic boy Louis Martin was found safe in Montreal after being reported missing by his father (who also tweeted his son's disappearance).  

Wandering is a very serious problem for persons with autism, particularly when they also suffer from "comorbid" intellectual disability. It is long past time that everyone including mainstream media, Hollywood, television and autism "experts" stopped glorifying those with exceptional talents and started presenting full,  honest pictures of autism disorders.

As reported by The Montreal Gazette:

"Montreal police have located a 15-year-old boy with autism who went missing from his Outremont home early Saturday morning. Louis Martin was spotted near the Lionel-Groulx métro station after police had asked the public for help in finding the boy, who has the mental age of a 4-year-old.

Pierre Martin, the boy’s father, sent out a message on Twitter saying his son is safe.Martin, a political-science professor at the Université de Montréal, had tweeted his son’s disappearance on Saturday.
Police officers spent much of Saturday searching metro stations, parks, streets and alleys trying to locate the boy."