Monday, January 28, 2013

Conor's Quiet Joy

Autism is a spectrum in many ways including the ways in which it is presented through various media. Everybody, particularly the main stream media,  loves the feel good stories of accomplishment.  We all suffer when we see images of self injurious behavior: common occurrences in severe autism although rarely reflected in the mainstream media or in autism research accounts.  The photos of my son Conor in the composite above show him during the recent holidays in a calm, happy mood that is seldom depicted in portrayals of autism. 

Despite the hustle and bustle that comes with the season Conor, who can become quite agitated by loud, strange noises and disrupted routines, was able to stay calm, enjoy the company of visitors and ...  be happy.  I had not viewed these images when they were taken and found them while saving some recent outdoor pictures.  

I can't explain to someone who does not have a severely autistic child with profound developmental delays how much moments like these mean to me. Conor's quiet joy is not the stuff of a CNN feature but capturing and revisiting it  makes this Dad very happy. 

Friday, January 25, 2013

The Harsh Reality End of the Autism Spectrum

If you believe IACC Neurodiversity advocates  present and past,   Ari Ne'eman and Matthew Carey,  autism is not something that should be cured.  You won't see much about the harsher aspects of life with autism disorders if you read their writings. In their view autism is nothing more than a different way of thinking, not a ...  disorder ... or group of challenging symptoms for which cures are needed.

No, the enlightened  Neurodiversity thinkers who are selected to represent the mythical "autism community" at the IACC see autism in the image of the members of the ASAN Board of Directors, researchers who work with Dr. Laurent Mottron or successful entrepreneurs.  For them, and other ND True Believers,  autism's greatest horror occurs on those rare occasions when a media outlet like Slate presents a perspective of a parent whose child presents with autism, intellectual disability and seizures, to say nothing of serious self injurious behavior or unintended aggression toward family and others who actually care for them.

I was surprised today to see CNN present a video of a family using marijuana to alleviate their son's very serious self injury.  Below is the video as shown on KPTV 12 Portland, Oregon  showing some painful realities from the harsher, severe end of the autism spectrum, far away from the irrational ideology of the Neurodiversity advocates who misrepresent autism to the world:

Following is a video From Kim Oakley a gutsy, honest mother of a severely autistic son with epilepsy and author of the blog Autism, Epilepsy and Self-Injurious Behavior, also much different from the high functioning autism of  media stars,  academics and ASAN corporate directors:


In the DSM5 the APA is continuing the process of eliminating the intellectually disabled and most severely challenged from the autism spectrum.  They are reducing the intellectually disabled from the vast majority of the autism spectrum pre-DSM-IV to the small segment that IACC Neurodiversity rep Matthew Carey falsely presents to the world.  

This forced removal of the intellectually disabled from the autism spectrum will not help them. It will not aid us in understanding why persons with symptoms of autism, intellectual disability and epilepsy are so prevalent in association with each other.  It is not based on "science".  It is intellectually dishonest. It is cold indifference to the realities of severely autistic children and adults. 

Autistic children and mothers were once hurt by the unsubstantiated cold mothers theories of Kanner and Bettleheim. Today it is in fact parents who know of the realities facing their severely autistic children far better than the academics and Neurodiversity ideologues who are once again banishing them from sight.  

Today the real cold parents are the clinical and research professionals who are supposed to help autistic children but are abandoning those most in need of their help. They are, to borrow the APA expression, cleaving meat loaf at the joints. they are cleaving from their sanitized spectrum those who present with the most challenging autism symptoms. 

Thursday, January 24, 2013

IACC Neurodiversity Member Matt Carey Single-Handedly Reduces Intellectually Disabled To A "Small Segment of the Autistic Population"

The Interagency Autism Co-ordinating Committee (IACC) plays an important role in autism research and understanding.  It is unfortunate that sitting as a public member of the IACC is lbrb blogger Matthew J. Carey,  a member of the Neurodiversity movement which, at its core (1) portrays autism as a different way of thinking  not a disorder or disability and (2) belittles efforts to seek cures for autism. His official bio posted on the IACC web site emphasizes his considerable background as an industrial researcher and his deep commitment to "communicating the importance of getting the science right for autism".  The bio is very specific about his many accomplishments in  industrial research. Although it does describe him as a blogger the bio makes no mention of  Matthew J. Carey, Ph. D.'s anti-cure, autism is a strength Neurodiversity ideological biases:

Matthew J. Carey, Ph.D.

Parent and Autism Blogger

Dr. Matt Carey joined the IACC as a public member in 2012. Dr. Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and other autism blogs. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. He is also interested in analyzing trends in health and education public data sets; his critique of "Timing of Increased Autistic Disorder Cumulative Incidence" was published in the journal Environmental Science &  Technology and his analysis of parents' academic expectations for their children with ASD, based on the 2007 National Household Education Survey, was presented at a poster session during the 2011 International Meeting For Autism Research (IMFAR). Dr. Carey is an active industrial researcher in computer hardware whose current research interests include magnetic thin films, spintronics, and magnetic nanostructures. His work has been published in high-impact journals such as Nature Materials, Physical Review Letters, and Applied Physics Letters and he currently holds 106 patents or published patent applications. He received his B.S. in physics from Harvey Mudd College, his M.S. in Physics from the University of Illinois, Urbana-Champaign and his Ph.D. in Physics from the University of California, San Diego.

In a recent comment  at his lbrb blog criticizing the Slate article Is the Neurodiversity (ND)  Movement Misrepresenting Autism?", and its  author Amy S.F. Lutz, Carey singles in on her comments about autism and the intellectually disabled and in the process single-handedly reduces the numbers of persons with autism and intellectual disability:

 "The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population."

The fact of the matter is that,  according to CDC autism expert Dr. Marshalynn Yeargin-Allsopp, persons with autism once constituted the "vast majority" of persons with autism ... until the APA expanded autism by grouping it with PDD-NOS and Asperger's in the DSM-IV group of pervasive developmental disorders now known as the "autism spectrum" reducing the intellectual disabled to approximately 40% of the entire autism spectrum.  

The fact of the matter is that, according to  CDC surveys in 2004 and 2006 those with intellectual disability still constituted 41-44%  of the entire autism spectrum.  

The fact of the matter is that in Autism and intellectual disability: a study of prevalence on a sample of the Italian population, La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF, the authors reported that their study confirmed the relationship between ID and autism and suggested a new approach in the study of ID in order to elaborate a new integrated model for people with ID and autism.

The fact of the matter is that IACC member Matthew J. Carey,  Ph. D., (Physics), accomplished industrial researcher, provided no sources or authorities for his claim that intellectual disability is a small segment of the autistic population.  

Of course in fairness to Matthew J. Carey, Ph. D., industrial researcher, his Neurodiversity beliefs probably didn't  allow his purported commitment to "communicating the importance of getting the science right for autism" to function properly.   

Amy F.H. Lutz is of the view, as am I, that Neurodiversity misrepresents autism.  IACC member Matthew J. Carey's attempts to single-handedly reduce the numbers of intellectually disabled is a very clear example of such misrepresentation.

Tuesday, January 22, 2013

TPGA Aghast and Angry: Slate Dares Print Autism Parent Critique of Neurodiversity Ideology

TPGA guru Shannon Des Roches Rosa (SDDR) is aghast and angry because has dared publish "Is the Neurodiversity (ND)  Movement Misrepresenting Autism?", a gentle critique by autism parent Amy S.F. Lutz, of the harmful, irrational Neurodiversity ideology embraced by the leaders of the ironically named "Thinking" Person's Guide to Autism.   Self labelled as a guide for "Thinking" Persons the TPGA is harshly critical of anyone, especially autism parents, who disagree  with them; anyone who portrays autism as a disorder or as a group of disorders, deficits or symptoms.  In the Neurodiversity world of the TPGA  the autism and related symptoms of a child must be accepted as blessings, and attempts to treat and cure those symptoms, deficits or disorders rejected, by THINKING persons.  That is the true autism path according to Neurodiversity, that is the true autism path according to SDDR and the "Thinking" Person's Guide to Autism.  Woe to any parent or publication that dares disagree with the self appointed arbiters of rational autism thought at the TPGA.

In a quick and angry response to the Slate article  Des Roches Rosa was, to her credit, open and honest about WHY she was upset.  SDRR. as reflected in the title of her response, was upset because the author of the article questioned Neurodiversity ideology: Why Did Amy S.F. Lutz Attack the Neurodiversity Movement?.  The alleged attack consists of pointing out the fact that very high functioning self advocates who do not required medical treatment, or treatment of any kind, misrepresent the harsher realities of low functioning persons with autism disorders. She points out correctly that such misrepresentation, especially coupled with the DSM5 substitution of Asperger's for autism, will probably result in  ever fewer autism treatment advances.  Ultimately this misrepresentation and misdirection of resources will probably result in the very limited progress to date in autism treatment research being slowed even more ... to the detriment of the low functioning autistic persons most in need of progress in autism research.

The TPGA and other ND faithful will undoubtedly deluge with demands that they be permitted an opportunity to present their replies to the Lutz article.  They truly believe theirs is the one true path and voices of dissent must  be silenced or at least drowned out. They believe that strangers are better placed to speak on behalf of low functioning autistic children then their parents, including me, who speak on  behalf of our own children.  

I have no desire to tell  high functioning autistic self advocates that they must seek treatment.  I have no desire to tell SDDR, or Kristina Chew referenced by SDDR, that they should seek treatment for their low functioning autistic children.  I absolutely will not, though,  let them speak on behalf of my son.  I urge all parents who want to see treatments developed for their autistic children to continue the fight. The ND movement including the TPGA are set in their ways and will continue to try and impose their views of autism on the world.  For our children's benefit we will  have to continue to speak up and attempt to counter their misguided efforts. 

Thank you Amy S.F. Lutz for speaking out.

Saturday, January 19, 2013

Facing Autism Parenting Challenges? Try A Bit of Janis

As a father of a soon to be 17 year old son with severe autism disorder symptoms and profound developmental delays I understand fully when parents discuss those challenges on line.  (He is also a very solid 6'1" and still growing). I do not mock other parents and accuse them of engaging in self pity, or of demonizing their children,  as do many in the Neurodiversity movement including the "Thinking Persons" at the TPGA.  

I understand fully what it means to try and help your adolescent son when he is hitting himself in the head in the middle of the night or when at a younger age he slipped out of the house unnoticed, crossing full parking lots and a busy main street on a busy Saturday afternoon.  I understand and I communicate these challenges so that people in the world at large are not misled by the media that adores the high functioning success stories or the DSM5 teams that are now redefining the most severe intellectually disabled autistics out of the spectrum as the only co-morbid condition group specifically and expressly targeted for exclusion.

I communicate these realities to be honest to my son and present honestly the challenges he faces even as those with his symptoms are being abandoned by the inglorious drafters of the DSM5 autism spectrum disorder.  To those who think otherwise I hope  you have a good day.  

When I feel the stresses of caring for a severely autistic, profoundly developmentally delayed son, as happens on occasion, I do not seek support on the internet.  I find my joy in my son, not in his disorder but in him, the pure joy in the many good times and even the joy that comes from trying to help some one as best you can overcome the severe challenges they face.  

I also, like any human being, find joy in diversions, including music.  Some musicians have the ability to lift any spirit, to assist in facing any challenge.  One that I have always enjoyed since the days when she was with us and blessing us with her talent and her incredible heart and soul was ... and still is ... in her music ... Janis Joplin.  If you're feeling a bit worn down try a bit of Janis.  I don't know for sure if it will work for you but it sure works for me. 

Saturday, January 12, 2013

Conor's Fredericton 2012 - Part II

The Autism Society New Brunswick met on several occasions with senior civil servants during the administration of successive provincial governments to advocate for a modern residential care facility and system. The concept was to have a  facility located in Fredericton because of its central location and proximity to the autism expertise of  UNB, UNB-CEL and the Stan Cassidy Centre. The centre would provide an alternative to the general psychiatric hospital facilities at Centracare in Saint John and at the Regional Hospital in Campbellton.  The professional advisers at the centre could then provide services on as needed basis to group homes situated in local communities around the province for those with more moderate impairment levels.  

I have personally suggested that an additional reason for locating the central residential care and treatment facility in Fredericton  is Fredericton's outstanding natural environment.  So far, no luck. So far, immobility of thought and action have prevailed.  The ideological rigidity of the current Alward government  further preclude any development as described above and on the CBC web site by Clinical Psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell.  The years long frustration though will not prevent me from continuing to advocate and do not prevent our family from enjoying the natural wonder of Fredericton.

Friday, January 11, 2013

Conor's Fredericton 2012 - Part I

Moved back to New Brunswick from Burlington (I commuted each day to Toronto (Eaton Centre) and back) in 1997. Conor was 1 year old at the time and has since grown up in The Green City aka Fredericton. I can't imagine what life would have been like with 4-5 hours commuting each day, time I would not have spent with my family. I don't know what that would have meant for Conor's development and enjoyment of life. I know I have loved being back in Fredericton and I believe Conor has also benefited from the natural environment of "Freddy Beach".