Thursday, May 31, 2012

ABA Treatment for Autism: America Leads, Lets Catch Up Canada, Lets Get Moving Again!!

At one time the argument might have been made that Canada led North America in terms of provision of evidence based treatment for autism.  Strong parent advocacy had made gains in encouraging provincial governments in British Columbia, Alberta and New Brunswick to provide Applied Behavior Analysis treatment. Our federal government, however, refused to get involved in any meaningful way and the Harper government played politics with the National Autism Strategy. The pitiful National Autism Symposium was postponed to allow the deck to be stacked with anti-ABA advocates and to weed out ABA advocates including me.  Here in New Brunswick our successful provincial program for early intervention based on the recognized (Eric Larsson, David Celiberti) UNB-CEL Autism Intervention Training program has  been abandoned at both the early intervention and school levels in favor of  in house autism intervention "training". In New Brunswick gains made are being abandoned, in Canada federally they never started.  In the Courts our Supreme Court of Canada, apart from a human rights and statutory analysis,  opined in Auton that ABA was an "emergent" therapy, notwithstanding earlier findings by the US Surgeon General, among other prominent authorities, that ABA effectiveness as an autism treatment was backed by 30 years and hundreds of studies.

Our good neighbors to the south, however, are taking autism disorders more seriously with more states requiring insurance providers to include ABA treatment and a 2012 federal judge ruling ordered that Medicaid cover ABA treatment in Florida.  Now Autism Votes, an Autism Speaks initiative, reports that the US federal government has concluded that ABA is primarily a medical, not just educational, therapy with the result that autistic persons among the 8,000,000 US federal employees will be eligible for ABA treatment under their medical coverage: 

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

NEW YORK, NY -- Autism Speaks hailed today’s announcement by the federal government, the nation’s largest employer, that Applied Behavior Analysis (ABA), the most widely used behavioral intervention used to treat autism, is a “medical” therapy that qualifies for health insurance coverage, rather than an “educational” service.

The decision by the U.S. Office of Personnel Management (OPM) involves health insurance coverage provided to the nation’s eight million federal employees, retirees, and dependents, under the Federal Employees Health Benefits (FEHB) Program. It could have even more far-reaching implications on the health insurance benefits provided all Americans living with autism, as it will be much harder for insurance companies to continue denying coverage for ABA treatment.
“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ - provided by the schools at taxpayer expense,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.” 

The decision was rendered in the form of guidance to insurers who participate in the FEHB Program for policies that will be renewed or issued starting in 2013. The OPM decision does not require the insurers to cover ABA, but rather allows them to offer the coverage as it does many other medical treatments. The guidance reads: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

Autism Speaks has fought to provide families insurance coverage for ABA therapy through state-regulated plans, self-funded group plans that are regulated under federal law, the FEHB Program, and TRICARE for military families. In each instance, opposition to covering ABA treatment has been based in large part on the claim that ABA is educational, rather than medical."

In Canada our provincial government health care providers defined autism intervention as a social service rather than a medical necessity helping it avoid responsibility for autism coverage in the Courts. Canada still has an autism advocacy movement at work trying to right the Canadian autism ship which has floundered on the rocks of indifference.  Medicare for Autism Now! has been fighting hard to encourage our disinterested federal government to take autism seriously, meet with the provinces and get effective ABA treatment covered for autism under all provincial health care legislation.  

Wake up Canada! We are not falling behind in autism treatment we have already fallen way, way behind.  Get behind Medicare for Autism Now! and provide your support, get involved.  When we wave the Canadian flag this July 1st lets remember our autistic children in need of effective ABA treatment. If our American friends can wake up and address the autism crisis that confronts us all surely we Canadians can do so too,  EH?

Wednesday, May 30, 2012

"Thinking" Persons Guide to Autism Issues Proclamation Declaring Autism Speaks Does Not Benefit Autistic People

Some of the people referenced in this post are affiliated with Autism Speaks. TPGA does not consider Autism Speaks an organization that benefits autistic people. -SR

I am not sure what constitutes "Thinking"  at the "Thinking" Persons Guide to Autism. The above quote from "SR", Shannon Des Roches Rosa, precedes a blog comment by Carol Greenburg, a TPGA sponsored blogger at the recent IMFAR 2012 conference in Toronto. I attended IMFAR courtesy of Autism Speaks and found the conference to be an amazing experience. (Although attending courtesy of Autism Speaks my attendance still cost me considerably as I lost 3 days out of my legal practice and time I could have spent with my son Conor). 

I am not totally surprised that SR would make a statement of that nature about Autism Speaks. This is after all the same individual who used tragedy to promote TPGA ideology and products: 

 When I hear about yet another dangerously misinformed autism parent killing their child because of  autism fears, I literally fall to my knees with grief. What kind of world do we live in, if people can't bear. ........ I also blame autism organizations and websites like Age of Autism, Adventures in Autism, AnneDachel, and SafeMinds, which have made unilateral demonization of autism their mission; which do no outreach whatsoever based on building positive supports and communities; and which use calculated cult-like "us or them" mindsets, attack dog techniques, misinformation, and censorship practices to keep their almost exclusively autism parent and grandparent faithfuls' righteous indignation and self-pity at a roiling boil.

It doesn't matter how much you love someone with autism -- if you continuously and publicly declare them damaged goods, you are hurting them. And their peers. And telling everyone else it is acceptable to hurt Autistics. ........this latest tragedy makes me frantic to get our TPGA book out (I'm marking up the proof right now, if there are no more hiccups with the publication process and thanks to the superhero manuscript powers of Jen Myers, it should be available in one week)."

I notice that Autism Speaks wasn't mentioned on SR's "blame" list when she wrote the above comment in response to the tragedy of a mother taking her autistic child's life. Prosecutor's in that case declined to prosecute the woman because they doubted they could prove her sanity at the time she killed her child.  But that didn't stop the self referenced "squidalicious" Shannon DRR from launching her bizarre rant against parents and others who view their child's autism disorder as a ......... disorder.

Autism Speaks deserves to be criticized, like everyone else, on occasion. My oldest non-autistic son finds ample, and I mean ample, reason to criticize me and I actually get a kick out of it when he does.  As the father of a severely autistic son with profound developmental delays I am not sure at times whether all those "thinkers" at the TPGA actually realize that, notwithstanding all their feel good buzzing about autism as an alternative way of thinking etc.,  autism is still a ..... disorder.   I am a bit surprised that SR would identify Autism Speaks as one of the forces of evil and I am not sure why but I assume it is because AS helps fund cause oriented research which may some day result in treatments and cures for autism disorders.

My own frustrations with Autism Speaks arise from their attempts to be all things to all people and in the process downplaying some of the harsher realities of those most severely affected by autism disorders.   In particular I believe that Autism Speaks glosses over the strong connections between Autistic Disorder and intellectual disability.   Autism Speaks has, however, been a key factor in the research area in particular; both genetics and environmental autism research, although I would like to see more emphasis on the environmental research. While I disagree with some of their decisions and directions overall I believe Autism Speaks is a positive force that does benefit autistic people, particularly in raising funds for autism research. Of course as a parent of a son with severe challenges arising from his autistic disorder, and as an unthinking person, my opinion probably doesn't count for much as a guide to autism issues.

I guess it is just par for the course that if you try to please everyone you risk pleasing no one and certainly not someone who identifies so many parents and parent driven organizations as "forces of evil".    I will have to start reading TPGA more closely now, not in hopes of learning anything constructive about autism disorders, but for the amusement value of seeing from day to day who SR and the TPGA have proclaimed to be not acting for the benefit of autistic people.   

Tuesday, May 29, 2012

A Focused Environmental Autism Research Strategy Is Needed

If you have a child who is severely affected by an autism disorder, whose ability to understand the world is limited, who wanders into dangerous traffic, lakes or rivers,  is prone to seizures or  engages in serious self injurious behavior autism is not just an alternative way of thinking or an opportunity to build a career mouthing empty feel good cliches about autism acceptance on twitter.  If you are a parent with a severely autistic child you will probably fight for evidence based autism interventions, accommodation in the schools for autistic students and a place for them to live with dignity as you grow old and ultimately die.  These are the harsh realities faced by  parents with low functioning autistic children who must look at autism seriously and not as an opportunity to tell the world that everything problematic about autism is solved if we all just accept autism in our child. For many parents we would like to see solid scientific research into all the causes and conditions that create autism in our children, genetic and environmental causes.

Autism may be prevented, treated or even cured in the future if the research is done.  If that research leads us to the age of the father in some cases then that is important to know. If that research leads us into the multitude of possible impacts on children while in the incredibly important environment known as the womb then that research must be done.  What will not help in understanding autism is simply throwing our hands up in the air and arguing that we should not conduct research on the prenatal environment or in mocking attempts to research possible environmental causes of autism as some Neurodiversity bloggers like to do.  

For many of us our child's Autistic Disorder is a serious, life impairing disorder, and a mystery  that must be solved by solid research, genetic and environmental. Environmental research has been short changed and a solid environmental research strategy is required as recently advocated by Philip Landrigan and his colleagues in A Research Strategy to Discover the Environmental Causes of Autism and Neurodevelopmental Disabilities. Landrigan and his colleagues Luca Lambertini and Linda Birnbaum of the Children’s Environmental Health Center, Mount Sinai School of Medicine, New York and NIEHS and NTP, National Institutes of Health, Department of Health and Human Services, Research Triangle Park, North Carolina.  

The distinguished authors argument includes a "proof of principle" segment in which they list studies linking various toxic substances to neurodevelopmental impairments:

"Exploration of the environmental causes of autism and other NDDs has been catalyzed by growing recognition of the exquisite sensitivity of the developing human brain to toxic chemicals (Grandjean and Landrigan 2006). This susceptibility is greatest during unique “windows of vulnerability” that open only in embryonic and fetal life and have no later counterpart (Miodovnik 2011). “Proof of the principle” that early exposures can cause autism comes from studies linking ASD to medications taken in the first trimester of pregnancy—thalidomide, misoprostol, and valproic acid—and to first trimester rubella infection (Arndt et al. 2005Daniels 2006).

This “proof-of-principle” evidence for environmental causation is supported further by findings from prospective birth cohort epidemiological studies, many of them supported by the National Institute of Environmental Health Sciences (NIEHS). These studies enroll women during pregnancy, measure prenatal exposures in real time as they occur, and then follow children longitudinally with periodic direct examinations to assess growth, development, and the presence of disease. Prospective studies are powerful engines for the discovery of etiologic associations between prenatal exposures and NDDs. They have linked autistic behaviors with prenatal exposures to the organophosphate insecticide chlorpyrifos (Eskenazi et al. 2007) and also with prenatal exposures to phthalates (Miodovnik et al. 2011). Additional prospective studies have linked loss of cognition (IQ), dyslexia, and ADHD to lead (Jusko et al. 2008), methylmercury (Oken et al. 2008), organophosphate insecticides (London et al. 2012), organochlorine insecticides (Eskenazi et al. 2008), polychlorinated biphenyls (Winneke 2011), arsenic (Wasserman et al. 2007), manganese (Khan et al. 2011), polycyclic aromatic hydrocarbons (Perera et al. 2009), bisphenol A (Braun et al. 2011), brominated flame retardants (Herbstman et al. 2010), and perfluorinated compounds (Stein and Savitz 2011).

Toxic chemicals likely cause injury to the developing human brain either through direct toxicity or interactions with the genome...."

Landrigan, Lambertini and Birnabaum generated a list of 10 chemicals that they recommended as priorities for investigation.  They expressly stated that the list is not intended to be exhaustive but is intended to provide a strategic environmental research focus to catalyze new evidence based programs for prevention of neurodevelopmental disorders in children. The  list includes some very well known dangerous substances:

  1. Methylmercury (Oken et al. 2008)
  2. Polychlorinated biphenyls (Winneke 2011)
  3. Organophosphate pesticides (Eskenazi et al. 2007London et al. 2012)
  4. Organochlorine pesticides (Eskenazi et al. 2008)
  5. Endocrine disruptors (Braun et al. 2011Miodovnik et al. 2011)
  6. Automotive exhaust (Volk et al. 2011)
  7. Polycyclic aromatic hydrocarbons (Perera et al. 2009)
  8. Brominated flame retardants (Herbstman et al. 2010)
  9. Perfluorinated compounds (Stein and Savitz 2011).

Landrigan, Lambertini and Birnbaum recognize the importance of genetic research but, as other learned authorities have noted, genetic research has received the overwhelming share of autism research dollars. The recent IMFAR conference in Toronto left me with the impression that the "it's gotta be genetic" trend of channeling autism research overwhelmingly toward genetic research  is continuing. As these learned authors have argued so compellingly it is critically important that environmental autism research be focused .... and funded ... if autism disorders are to be prevented, treated or cured in future.

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.

Monday, May 21, 2012

After IMFAR Some Green Therapy

My 4 days at IMFAR 2012 in Toronto were an incredible experience. After 4 days spent largely inside a hotel though I was in need of some "therapy". Yesterday I hit the trails for some outdoor Conor time.  Felt great.  

Today more time outdoors enjoying the green city  of Fredericton and its surroundings.  Green therapy works every time.  I should have asked Ilanit Gordon Ph.D. of oxytocin fame to do some fMRI scans to get my baseline measurements at the end of the IMFAR conference and then do some more today after a couple of good outings on the North Riverfront Trail and around Killarney Lake. Oxytocin? Not for me thanks.  Green therapy, absolutely!

Sunday, May 20, 2012

Walking With Conor After IMFAR Autism Research Convention

IMFAR was quite an experience.  Very intense. Learned lots, saw lots and met some interesting people. Spent a lot more time indoors then I usually would at this time of year though.  I was glad to get back to Fredericton and get outdoors  walking with Conor today.  And we did lots of walking.  Conor had missed his old Dad while I was gone and his Mom managed the situation by having him check off each day that I was gone on the list above including this morning when he woke up.  He checked Sunday off the list and we hit the trails. Great to be home.




Saturday, May 19, 2012

Ritvo Swedo DSM5 Autism Shootout At The IMFAR Corral

Edward Ritvo-Susan Swedo Shootout at 
the IMFAR Corral, Sheraton, Toronto
Photo by Harold L Doherty, May 18, 2012

Dr. Susan Swedo of the DSM5 autism committee presented a defense of the proposed DSM5 Autism Spectrum Disorder twice yesterday at IMFAR in Toronto.  After the second presentation I jumped up to the mike and asked about the exclusion of Intellectually Disabled under the exclusion wording "not otherwise accounted for by general developmental delays" in the wording for Mandatory Criterion A social communication categories. I was advised that some but not all ID would be excluded.  A couple more questioners approached the mikes on both sides of the room including Dr. Edward Ritvo author of Understanding the Nature of Autism and Asperger's Disorder: Forty Years of Clinical Practice and Pioneering Research.  Dr. Ritvo asked pointed questions about the risk-benefit analysis of introducing the new DSM5 ASD and did not appear happy with the answers he was getting from Dr. Swedo who switched the questioning to the other microphone where Dr. Marshalyn Yeargin-Allsopp was waiting to make a point.  As a layperson, a parent autism advocate with concerns about the DSM5, I am happy that Dr. Ritvo added his prestige and expertise to the debate about the wisdom of the DSM5 autism do-over.  I hope we hear more from Dr. Ritvo on this subject.

Friday, May 18, 2012

DSM5 Autism Day At IMFAR 2012: Swedo Confirms Some Intellectually Disabled Will Be Excluded from DSM5 Autism Spectrum Disorder

Today was DSM5 Autism Do-Over Day at IMFAR 2012.  Dr. Susan Swedo, head of the DSM5 committee that drafted the DSM5 Autism Spectrum Disorder, spoke twice today, once at a stakeholder's luncheon  and afterwards  at an oral presentation in the Grand Ballroom.  Dr. Swedo replied to my questions after the second presentation and indicated that the DSM5 Autism Spectrum Disorder will exclude some, though not all, intellectually disabled from an ASD diagnosis.

I attended both events but did not have an opportunity to question Dr. Swedo during the luncheon as the event was simply running out of time. During the luncheon presentation she was very emotional in discussing the media criticisms of the DSM5  Autism Spectrum Disorder. At one time she accused some in the media of telling lies about the motivation behind the new DSM5.  It was not done, as alleged by some, to cut back the autism epidemic and save costs for insurers.  It was done because the DSM5, according to Dr. Swedo, reflected experience with autism disorders and careful study. It was done to improve specificity in diagnosing autism not to eliminate some.  Having heard her speak with great emotion and conviction I don't question Dr. Swedo's sincerity, her compassion or the motivation behind the redefined DSM5 autism definition.  I do disagree with the specific targeting of intellectually disabled for exclusion from the DSM5.

Dr. Swedo delivered an expanded version of her presentation in a late afternoon session.  Her remarks began, as they did at the luncheon, with a vigorous attack on the media for their DSM5 coverage and misrepresentations about exclusion of high functioning persons with autism and the motives which prompted the new definition. Dr. Swedo said nothing about the exclusion of intellectually disabled until I asked voiced my concerns during the question period about the exclusion of intellectually disabled from the DSM5 definition by operation of the "not accounted for by general developmental delays" exclusionary clause in Mandatory Criterion A of the DSM5's new ASD.  Dr. Swedo indicated that the exclusionary phrase would result in exclusion of some but not all intellectually disabled from a DSM5 Autism Spectrum Disorder.  

Dr. Swedo's comments confirm that the expansion of autism in recent editions will culminate with HFA/Aspergers as the new Autism.   Many of the vast majority of persons with autism and intellectual disability that existed prior to the DSM-IV are now being kicked to the curb; removed from the autism spectrum. 

Thursday, May 17, 2012

Intellectual Disability At IMFAR: Underdiagnosis of Autism Spectrum Disorders in Persons with Intellectual Disability

It comes as no surprise but very little is said  about Intellectual Disability at the IMFAR 2012 autism research convention oral presentations.  Prominent autism experts, including Catherine Lord, have noted in the past that intellectually disabled autistics are under represented in autism studies.  This is true even though the vast majority of persons with Autistic Disorder have intellectual disabilities.  The exclusion of the intellectually disabled from autism research reflects the challenges presented by working with low functioning, severely autistic, intellectually disabled subjects.  None of the oral presentations to date focused on the intellectually disabled autistics or discussed issues specific to them. Some studies mentioned that low cognitive subjects were not included but generalized their conclusions to all persons with autism. If you look hard enough though you can find mention of the intellectually disabled hidden in the IMFAR poster sessions.

One such poster involved a Gent University study by Herbert Roeyers and Martine Thys titled Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities.  The authors point out that only a limited number of studies have examined the prevalence of ASD in ID populations;  of intellectually disabled persons with autism spectrum disorders.  The authors felt it is important to study this co-occurrence relationship between ASD and ID in order to improve quality of life for persons with this co-morbidity relationship. In their study the authors arrived at a prevalence rate of 12.5% of persons with ASD in the ID population studied or approximately 10 times the percentage for persons with ASD in the general population.  Of the numbers identified with ASD only 38% were previously identified as having ASD indicating very serious underdiagnosis of ASD in the Intellectually Disabled population.

While the New York Times expresses great concern over possible future DSM5 exclusion of high functioning autistics, and prompts much reaction from autism experts, neither the NYT, nor most of the experts, even mention current underdiagnosis of autism in people with intellectual disability.

IMFAR 2012 Preconference Highlights: Oxytocin, IPADs and the Autism Speaks Autism Treatment Network

Yesterday was a busy day at the IMFAR 2012 Preconference sessions. Although described as a Preconference the days events were packed with information and persons in attendance had to use their time carefully, whether they were suffering from jet lag or not, to maximize their participation.  The highlights of my day at the Pre-Conference were:

1) IMFAR Press Conference Highlighting Key Studies. Introduced by INSAR President  Helen Tager Flusberg with presentations by Steven Scherer, Dan Messenger, Nanit Gordon, Terry Bennett and Rebecca Landa. Dr. Tager Flusberg opened the press conference presentations with a brief overview of the IMFAR presentations during this second decade of IMFAR conventions. The presentations are the cutting edge or leading articles in autism research during the past year and have not been yet been presented for full review prior to publication in learned journals.  

I will be writing more about each speaker's presentation when time permits.  I was very interested in Dr. Nanit Gordon's presentation about Oxytocin's Impact on Social Cognitive Brain Function in Youth with ASD which seemed to follow directly from a presentation I heard earlier in a preconference session about parental behaviors and children's capacity to become members of the social group, understand complex social signals and develop social collaboration. I reference that session in paragraph 2).  Dr. Gordon presented data including fMRI images showing the effect of Oxytocin on areas of the brain important to the aforementioned social capacities.  Oxytocin was one of the response items to certain types of interaction, particularly parental interaction. My concern and my questions concerned whether if parental interaction increases a hormonal response, oxytocin, which improves capacity for at risk children to develop social capacity does that imply that our current research is indicating a return to the Bettelheim era when autism was blamed on cold, aloof mothers?  Dr. Gordon and Dr. Helen Tager Flusberg both spoke with me after the presentations and assured me that was not the case ... the data does not support the view that  parental personality or interaction, particularly mothers, plays a role in causing autism disorders in children. The aim of the research is to find treatments to help improve the social capacities of children with autism.

fMRI Images presented by Dr. Ilanit Gordon,of Yale, showing
 effect of Oxytocin introduced by nasal spray on areas of the brain 
important for social functioning. On the left are the images of
the days subject received the spray. On the right are images of
days when a placebo spray was used. 

2) Preconference sessions for people with ASD, families, clinicians, researchers, policymakers and others interested in Autism Spectrum Disorder(s). I attended a preconference session at which study results and information  were presented concerning "Bio-Behavioral Synchrony and the Development of Social Reciprocity"".  As stated in the Press Book Abstract, the speaker Ruth Feldman, Ph. D., Bar-Ilan University, described "how micro-level social behaviors in the gaze, vocal, affective, and touch modalities are dynamically integrated with online phsyiological processes and hormonal response to create dyad specific attachments and support children's capacity to become members of the social group, understand complex social signals, and develop social collaboration." As a parent listening to the presentation the information presented as summarized about seemed to be providing data that suggested a return to Bettelheims' Refrigerator Mothers theory of autism causation.  When the moderator took the podium to thank the speaker at the conclusion of her presentation he alluded to this possible interpretation of the presentation indicating that it is a delicate area to explore and one which must be done with balance. One of the response items measured was Oxytocin which prompted my questions to Dr. Gordon at the subsequent press conference.

3) Autism Treatment Network and the information about health issues of particular interest to persons with, or parents of children with, autism disorders. 

Many issues were covered including constipation, seizures, and sleep disorders. From the perspective of a parent of a son with severe autism disorder and developmental delays these are very important topics. Autism Speaks Autism Treatment Network and the various speakers presented helpful practical information for families and health care practicioners including "Strategies to Improve Sleep in Children with Autism Spectrum Disorders A Parent's Guide".

4) IPAD - Purdue Study on "Infusing Speech Output Into the Picture Exchange Communication System for Children with autism, Oliver Wendt, Ph.D., Ning Hsu, M.S., Rachel Casey, B.S. & Evan Mattice, B.S.  Contact info was presented concerning the study for Oliver Wendt, Conclusions without getting too specific at this time included that "All participants mastered iPad intervention, but varied in ability to complete later protocol phase, which are replicable across settings."

Tuesday, May 15, 2012

Autism Reality NB at IMFAR 2012 in Toronto, Canada

I am off tomorrow morning, very early tomorrow morning, for the IMFAR 2012 convention in Toronto.  I am very excited to be attending and blogging courtesy of Autism Speaks, Autism Speaks Canada, Dana Marnane and Suzanne Lanthier.  It was a tough day today though. Conor knows Dad won't be home for a few days and he has been a bit agitated.  This afternoon I received a call from the good people at the Leo Hayes High School that Conor was not having a good afternoon. They thought it better that he stay at school until his regular departure time though and I agreed.  When I picked him up I was informed that Conor had in fact calmed down and the rest of the afternoon had gone well.  Conor will miss his old Dad until I return Saturday night.  I might react differently but I will be missing him too.

It is worth it though to attend IMFAR with the annual concentration of autism research and knowledge being hosted in Canada. I am looking forward to blogging about IMFAR from the perspective of a father of a 16 year old son severely affected by his Autistic Disorder.  I underlined Disorder intentionally.  Autism for me is not a culture or a way of life. It is not just a different way of thinking.  It is a serious disorder that restricts my son's life, my son that I love dearly.  I want to attend IMFAR and learn  as much as possible and, hopefully, convey what I have learned, filtered through the perspective I have provided at Facing Autism in New Brunswick for 6 years. It is the perspective of a realistic, caring father who refuses to drink the "autism is a blessing" feel good Kool-Aid of the Neurodiversity advocates who insist on obliterating from public awareness the harsh realities inflicted on so many, including my son, who suffer from autism disorders. 

I hope the IMFAR convention brings news of real progress in autism research.  Although I am a realist I do not give up hope, hope based in solid research.  

I thank Autism Speaks for this opportunity.

Sunday, May 13, 2012

No Nature-Deficit Disorder For Conor In Fredericton,The Green City

Conor enjoying some time at the Saint John River
All photos were taken within a short walking distance
from our home in Fredericton, New Brunswick
The Green City

My younger son Conor, 16, suffers from severe Autistic Disorder.  He does not, however, suffer from Nature-Deficit Disorder in part because of our family life style choices and in part because we live in a city, and a neighborhood, with easy access to nature here in Fredericton.  I was pleased to see Fredericton referred to as a Green City in a recent article in the Brantford Examiner: City should look to Fredericton for example. Author Greg McMillan argues that Brantford, Ontario should brand and promote itself  as a Green City as Fredericton, New Brunswick has been doing aggressively over the past decade. The article notes that the two cities have much in common including trail systems located along rivers.  On a personal note we live less than a minute's walking distance from the North Riverfront Trail in Fredericton and Conor and I enjoy its benefits often, sometimes several times a day.

Conor suffers from Autistic Disorder a very real and serious disorder defined in the DSM-IV and the ICD-10, the two mental disorder diagnostic manuals used by physicians around the globe.  Nature-Deficit Disorder is not a medical diagnosis, it is an expression used by nature writer Richard Louv to describe the modern disconnect between man and nature, particularly between children and nature. Louv explains his coining and use of this term in No More "Nature-Deficit Disorder"The "No Child Left Inside" movement:

In "Last Child in the Woods," I described what I called "nature-deficit disorder." I hesitated (briefly) to use the term; our culture is overwrought with medical jargon. But we needed a language to describe the change, and this phrase rang true to parents, educators, and others who had noticed the change. Nature-deficit disorder is not a formal diagnosis, but a way to describe the psychological, physical and cognitive costs of human alienation from nature, particularly for children in their vulnerable developing years. In the four years since publication of "Last Child" (with an updated and expanded edition in 2008), the gap has grown wider.

I am not suggesting any specific connection between autism disorders and nature-deficits in modern children regardless of where they live.  I know that I personally feel better the more I get outside.  Like many of my generation I grew up outdoors before personal computers, video games and even before multiple channel, high definition big screen televisions.  If we lingered indoors our parents would occasionally tell us "to get outdoors and blow the stink off".  I was fortunate in that I always lived in small communities near natural environments. To this day I absolutely love being outdoors, near nature, along the river and in the woods.  I bring Conor with me and I believe that he, not because he is autistic, but because he is human, benefits from more exposure to nature.  It makes me feel good to be close to nature even more so when I can enjoy it with Conor.  I hope he feels the same way and benefits from it as I believe he does.