Showing posts with label self injurious behavior. Show all posts
Showing posts with label self injurious behavior. Show all posts

Tuesday, June 02, 2015

Autism, Intellectual Disability and Seizures, When Together, Constitute ONE DISORDER


In the picture above, taken 3 years ago my son erupted in sudden self injurious behavior smashing himself violently in the head  after he had been on the swing at his old grade school, Nashwaaksis Memorial School; a split second after he had been very smiling and happy. I captured the image because it was a series of pictures taken with an "athletic" setting on my Canon camera to capture his until then joyful, smiling activity on the swing.  In the commentary below from my January 19, 2008 commentary on Facing Autism in New Brunswick, "Autism Disorder and Impulse Control" I commented on a variation of such sudden violent activity when moments of joyful interaction turn harmful for Mom or Dad.   Seven years after I speculated that my son's sudden impulses of violence towards himself or us were a reflection of seizure activities in his brain he has suffered a number of obvious tonic-clonic or gran mal seizures and he has been on a variety of seizure medications for almost 3 years.  

I also  know now that my belief in an Autism Knowledge Revolution was premature ... very, very premature.  Despite much higher rates of epileptic seizures among persons with autism than among the general population ....  as much as 30% compared to as little as 1% based on sources I have read ...  it still does not seemed to have dawned on the autism research community that "co-morbidity: which seems to imply "coincidence" to this humble layperson are aspects of one neurological disorder not two co-morbid disorders at least for those who have features of both and that the presence both of these alleged "co-morbidities" is even greater among those who, like my son, also suffer from intellectual disability.

This humble layperson strongly recommends and begs the "autism research community" to re-focus its priorities and shift away from trivial, puerile aspects of autism, stop calling it a condition, stop equating autistic with savant and start focusing more on finding causes, treatments and yes, cures, for the debilitating trifecta of autism, intellectual disability and epilepsy which this humble Dad would like to inform you is in fact ONE DISORDER not THREE separate co-morbid conditions.  I realize you can snicker and snort as professionals in the field and dismiss my comments but if you do so you are dismissing the 24/7 observations, over a period of 19+ years  of a person who loves the subject being studied and so pays close attention ... a parent. Get serious about autism, intellectual disability and epilepsy or quit pretending you care.
Autism News and Opinion

SATURDAY, JANUARY 19, 2008


Autism Disorder and Impulse Control

There are many puzzling features of autism. Hence the puzzle symbol for autism. Some of the mystery is being removed as our daily news brings us reports of new studies mapping the genetic and biological basis of autism. But even those areas are just beginning to be explored and while we are living through an Autism Knowledge Revolution there is much which remains unexplained and mysterious. Impulse control is one of those unexplained mysteries.

Even 10 years after Conor was diagnosed with Autism Disorder I am still startled by the impulses which suddenly seize Conor, and I mean seize literally, turning gentle acts of affection into potentially injurious and even dangerous acts of violence. Conor is very affectionate, tactile and observant. He likes to place his hands on either side of Dad's scruffy bearded face and study my face. But some times, suddenly, his hands dig painfully into my face. Sometimes he will grab my throat. Conor has also suddenly grabbed his mother by the hair and snapped her head and neck. Walking arm in arm downtown Fredericton, as we often do on weekends, he will occasionally grab by arm forcefully.

We have never thought for even a second that Conor intentionally tries to injure. I do not believe he has control during these instances. An impulse appears to overcome him suddenly and often is not preceded by any apparent triggering environmental stimuli. Conor simply appears physically seized by a powerful impulse.

I do not know what causes these seizure like impulses. I realize that my description of these events may sound like they are epileptic seizures and Conor's pediatrician may well confirm that lay person's guess. I know that there are many articles commenting on comorbidity of autism and epilepsy. Putting a new name on them may well be helpful in leading to other literature and understanding but I suspect that the behavior itself when it happens will always be startling and mysterious.

Thursday, January 22, 2015

Our Happy Conor is Back! And Dad Is Happy Too!





The top photo above was taken a year and a half ago,  shortly after Conor recoved from a very serious adverse reaction to his seizure med at the time, Lamtrogine, which resulted in two weeks in the hospital including an emergency room visit and 6 days in the ICU where the excellent medical team there, including our family doctor, probably saved his life. 

The second  picture above was taken a few months ago, shortly after Conor started a second medication, Divalproex, after which he became agitated.  I was able to get him outdoors walking at the time which seemed to help. I second guessed myself at that time and continued with the Divalproex despite increased agitation.  A number of weeks ago Conor's Divalproex was increased as per the Neurologist's direction and things have been brutal for Conor since then.  I had to bring him home from school twice because he was aggressive with staff.  He was very aggressive at home with his mother and with me.  He was most aggressive though with himself smashing his head with both hands dozens of times a day.

A week ago I began decreasing Conor's Divalproex meds and he has been off of that medication entirely for a few days.  The result has been positive with his aggression and self injurious behavior dropping sharply and the last couple of days being joyful again.

I am not criticizing the Neurologist, nor am I making a generalization about Divalproex or offering
medical advice.  All I am saying is while on Divalproex Conor suffered with increased Divalproex resulting in increased self injurious behavior and aggression.  The school staff were kept in touch about the medication issue and the withdrawal schedule and noticed the same patterns including the recent return of our joyful, happy Conor.   I won't jump to any big conclusions or assume things will never get bad again but I will say that .... today ... Conor's Dad is one happy camper.

Tuesday, December 23, 2014

Self Injurious Behavior, Seizures, Reduced Life Expectancy Are My Son's Severe Autism Disorder Challenges Not Concern Over The Expression #MSSNG





Self Injurious Behavior, a  common occurrence  in some with severe autism, can appear in  a flash and transform a happy, fun filled moment into pain and suffering as it does above with my son Conor.  The very high functioning autistics who do not share my son's disorder and challenges have no right to dictate what autism research will or will  not be conducted,  research that may someday help my son and others with severe autism disorders. 


The world has recently seen the very talented, successful  Jerry Seinfeld "identify"  with autism before retracting his statements. More recently John Elder Robinson and other high functioning autistics got very upset over the use of the expression #MSSNG coined for the Autism Speaks research campaign and demanded that autistics must  dictate the course of autism research.  My son Conor with his severe autism disorder, intellectual disability and epilepsy has no understanding of this high functioning autism outrage.  His problems are more in the nature of the serious self injury engaged in often as set out in the pictures above. 

Today, with the holidays disrupting his routines, Conor engaged in one of his most serious meltdowns in some time hurting himself and the walls and when Dad intervened I felt some of it too. I honestly can't relate to the concern that #MSSNG is somehow an insult and travesty to those with autism disorders not when I am trying to restrain my powerful, 210 lb  6'1" son without hurting him and at the same time protect myself in the middle of a serious meltdown. 


Statements below from the AAP.


American Academy of Pediatrics 
Management of Children with Autism Spectrum Disorders,  (2007)
Statement of reaffirmation  126 (6): e1622. (2010)
Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 
are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.




Wednesday, June 25, 2014

NIMBY: New Brunswick Sends Severely Autistic Adults to NB's Northern Border with Quebec and To Maine, Far From Most Families



NIMBY, Not In My Back Yard: Severely autistic NB youth and adults are sent out of the province to the Spurwink facility in Maine and to the Restigouche Regional Psychiatric Hospital in Campbellton on NB's northern border with Quebec far from families and communities in NB's more heavily populated south.


 The UK Daily Mail has reported the story of a family whose severely autistic  son who was sent 250 miles away for treatment including for severe self injurious behavior.  The distance involved during his stay of more than 2 years meant 500 mile round trips to visit their son who had never met his sister:

  • Josh Wills was diagnosed with severe autism when he was two years old
  • For years his parents Sarah Medley and Phill Wills cared for him at home
  • But around two years ago his self-harming became so severe they realised he needed specialist treatment
  • He was transferred to a centre in Birmingham for specific care
  • But 20 months later his parents are still having to do the 500-mile round trip from their homes in Cornwall to visit Josh, who has never met his little sister
  • A petition #bringJoshhome has received 176,000 signatures
  • NHS Kernow say their plan is to bring Josh home but they have to ensure the specialist care is available before the teenager can be transferred

  • The UK is not the only jurisdiction lacking essential service facilities for persons with severe autism disorders. Here in New Brunswick substantial sums of money have been spent over the last 10 years housing individuals across the border at the Spurwink facility in southern Maine. Severely autistic adults who can not function in the group home system which lacks autism trained staff and professional supervision.  The exiles in Maine actually cost substantial  sums of money to the province with conservatively estimated costs of $300,000 per person per year. Adults with severe autism disorders who require permanent residential care and treatment are sent to Campbellton on NB's northern border with Quebec to live out their lives far from family members in NB's more heavily populated south. 

    A centrally located special care residential autism facility, based on a modern,  non hospital,  educational and community inolved model was proposed by Paul McDonnell in 2010 and simply ignored by ill informed government decision makers.  During the "connecting the dots" campaign I met with then NB Youth Advocate and Ombudsman Bernard Richard, Christian Whalen who worked in his office and Professor McDonnell.  After representations from McDonnell Richard looked to Whalen for a response which was dismissive.  Neither Richard nor Whalen have ever made any statements to indicate that they have any real knowledge of autism disorders but they don't have to in NB.  Here in NB careers are built by uttering community and inclusion cliches without actually understanding the subject being discussed or the consequences of failing to take meaningful action to address serious challenges like those presented by severe autism disorders.

    Contrary to their own community and inclusion cliche statements our government leaders have  been quite content to send our severely autistic adults to Maine and to NB's northern border with Quebec far from their own back yards.

    Community? Inclusion? NIMBY, Not in My Back Yard, sums up much more honestly and  accurately NBs failure to help autistic adults live with dignity, proper care and treatment  near family and friends.

    Sunday, June 15, 2014

    Shards of Severe Autism Reality


    We were cleaning books and papers out of the "China Cabinet" in our kitchen today.  We had never stored China there only photos, albums and papers.  Like other China Cabinets though there were glass doors on the front through which you could view the China.  Over time Conor had, on different occasions, while suffering meltdowns,  put his hands through the glass windows.  I thought I had gotten all the glass  out on each occasion but today after moving a group of albums I found some shards of glass, shards of severe autism realities.  

    Such events are not talked about by those alleged "thinking persons" and others who talk breathlessly about the joys of autism and criticize parents, and grandparents, of children with severe autism disorders and intellectual disabilities who talk honestly about the severe challenges faced by their own children, the children they love.  Personally they will not stop me from talking honestly about the severe autism disorder from which my son suffers and yes he does suffer from it.  I will continue to speak the  truth about these serious neurological disorders and if my words seem to them like shards of glass then so be it. 

    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.









    Monday, October 21, 2013

    Severe Autism Disorders: Conor's Autism Progress: Teeth Brushing and Tickle Shaves!


    Conor Doherty sporting a big smile after a quick 
    tickle shave adventure with Dad this morning

    Many famous "autistics" were not diagnosed until they were adults and have turned their diagnoses into good career opportunities: John Elder Robison, Michelle Dawson, Ari Ne'eman and Mr. Ne'eman's colleagues, the fellow corporate trustees of the Autistic "Self" Advocacy Network.  For these extremely high functioning "autistics" autism is merely a difference not a disorder and they object, some even demonize, parents who talk about autism DISORDERS and seek TREATMENTS and CURES for their autistic children.  For my son, who unlike all of the aforementioned, was diagnosed with a severe autism disorder and developmental delay the day after his second birthday autism is a disorder that severely limits his daily functioning abilities.  

    For Conor progress is not measured by speaking appearances at, or provision or participation as an Autism Speaks science advisory board or Washington press corps events.  It is not measured by success as a letter carrier with Canada Post, (a challenging job of which I have professional knowledge), a career researching high functioning autism or service on corporate boards for Autism Speaks or ASAN.  Nor will he be asked to participate on the IACC in the United States or similar agencies in Canada if they are ever established by a future, post Stephen Harper, federal government.  

    Conor's progress though is measured in activities that are important and bring us great joy and happiness when they can be measured.  We are not part of the confused crowd that tries to sway public opinion into thinking that we should love the autism disorder from which our son suffers, the disorder that severely limits his daily functioning abilities.  For us Conor's progress is measured by excellent dental checkups and the ability to get his face shaved to make him presentable to attend at the school he loves so much.  Following are two recent Facebook posts which speak to Conor's progress in these important areas:

    Tickle Shave Progress! Conor is now a young man and his whiskers need to be trimmed regularly. As with haircuts, and to an extent more so, Conor is nervous with razors scraping his face. I have called his shave a tickle shave to try and make it less frightening and I involve Conor in scheduling a shave. Yesterday I talked with Conor about having a tickle shave before school this morning. Shortly after he woke me up at 6 am sharp (as always) I asked him if we could have tickle shave at 7 am and asked him to let me know when it was 7. Conor let me know at 7 and we got a tickle shave done more quickly, and with less discomfort for him, than we have previously. A good start to the week!

    Conor's dental checkup this afternoon went very well. Conor was cool, calm and collected sitting in the dentist's chair even while Dr. Andrews did a tiny bit of cleaning. The verdict: Conor's teeth are looking great!!!! I honestly believe Conor enjoys brushing his teeth.

    Autism disorders are now widely recognized to be heterogenous in nature with wide variations in intellectual ability (50% of persons with autism also have an intellectual disability, WHO, September 2013), some have epilepsy, some suffer from depression, some from self injurious behavior.  Some leave the security of home and school, in some cases resulting in tragic ends.  My son left our house, on my watch, while I was occupied on a business call. Fortunately a good Fredericton citizen took him to a nearby convenience store, called 911 to report my son's presence there and waited until I arrived frantically after calling 911.  The good citizen, on learning I was there as Conor's Dad just left without giving me a chance to thank him.  My son also suffers from intellectual disability, self injurious behaviors and meltdowns and serious epileptic seizures.  Progress for my son is not measured in corporate board memberships or book sales, it is measured in calm dental checkups and good teeth.  It is measured in being able to shave the heavy beard from his face without too much discomfort to him to ready him for school.  My son has a severe autism disorder among the many variations of this heterogenous disorder.  The very high functioning media stars diagnosed as adults have much different measures and much different autism disorders.  They can sell all the books they want, build all the careers they want but they do not speak for my son with severe autism disorder.

    Sunday, March 03, 2013

    New Brunswick's Extreme Inclusion Fantasy Harms Some Children With Severe Autism Challenges


    Education and Early Childhood Development Minister Jody Carr 
     EECD/NBACL Event Focus on Inclusion: Walking in our shoes.

    Minister Carr spoke for 40 minutes, repeating the word
     inclusion 30 - 40 times but never mentioning  evidence based 
    accommodation of individual needs and challenges 

    Premier David Alward's government has transferred control over New Brunswick education policies and practices to the NB Association for Community Living.  The NBACL is, beyond doubt, an organization of  people with good intentions committed to improving the lives of those with intellectual challenges.  I wish , as the father of a son with severe autism disorder and profound developmental delays I could support them.   Unfortunately the NBACL, and its federal counterpart the CACL, have subscribed for decades to a philosophical, non-evidence based, belief  that all children's best interests are served, protected and accommodated by placement in a regular classroom. Alternative learning arrangements are demonized as "segregation" when in fact such arrangements constitute evidence based accommodation of disabilities that some children, including my son with severe autistic disorder and profound developmental delays, need in order to gain access to a real education.  

    In handing control over the education of children with disability challenges to NBACL the Alward government is acting in defiance of its obligation to ensure that education decision making represent the best interests of children founded on evidence.  It has placed many children with autism and other severe disability challenges at risk of being deprived of meaningful access to a real education, at risk of suffering mental and physical harm and at risk of being charged with criminal offences.  The Alward government has sacrificed some children with autism disorders and other disabilities to a fairy tale, one that is known to be untrue by many teachers, education assistants and parents.

    In handing control over education of children with disability challenges to NBACL the Alward government  has abandoned democratic principles by surrendering one of government's most important responsibilities to an outside organization unaccountable to voters.  Equally concerning is the fact that the NBACL does not subscribe to modern, evidence based approaches to educating children with disabilities.

    The NBACL adheres to one philosophical principle which it places above the best interests of individual students and which ignores the government's existing Inclusive Education Definition policy which requires education decision making based on the individual needs of the student and founded on evidence (not simplistic extreme inclusion philosophy) ... needs which in some cases, such as my severely autistic son, require education outside the regular classroom.  In any public discussion by NBACL reps of the Inclusive Education Definition no mention is made of the stipulation that inclusive education decision making is premised on  individual student needs  based on an a foundation of evidence requirement.  Nor is any mention made of the  fact that students with special challenges, autistic students in particular, in some instances very young, grade school students, are sent home from school when they can not function in NBACL inclusive classrooms. 

    My son is severely autistic with profound developmental delays.  He has been well accommodated in Fredericton schools since he was removed from the regular classroom at our request. He was overwhelmed in the regular classroom and came home each day with bite marks on his hands until he was removed to an alternate, individualized instruction area where he worked with an autism trained Education Aide.  Some children for whom the regular classroom is not the answer are not as fortunate though; some are expelled from NB schools, sometimes under police escort, and some are charged with assault when their behavior, their inability to exist and function in the NBACL dominated school system results.  It is always the child who is blamed never the ridiculously simple, non evidence based, unthinking philosophy of the NBACL which is forced on parents, education assistants, teachers, resource teachers and education department officials who must fall in line and repeat the NBACL belief in extreme, everyone in the regular classroom fairy tale.

    The children who are sent home and in some cases charged with criminal offences are powerful evidence that the simplistic everybody in the mainstream classroom philosophy is a failure that has hurt some children and impedes their access to a meaningful education contrary to the Education Act, the official Definition of Inclusive Education and contrary to principles enunciated in the Moore decision of the Supreme Court of Canada.

    New Brunswick Inclusive Education Definition 

    The New Brunswick government  Inclusive Education Definition  resulted from two inclusive education reviews: the MacKay and Ministerial Committee reviews. Both were initiated by the Lord government although the Ministerial Committee review continued under the Graham government during which time the Inclusive Education definition, after years of consultation with a wide range of stakeholders,  was concluded. I attended throughout both proceedings as an Autism Society New Brunswick representative,  and advocated, over the persistent opposition of NBACL representatives, for an evidence based approach to the individual education needs of students.  Those principles are set out throughout the Inclusive Education definition but particularly in the vision statement, the student centered principles and the accommodation sections (underlining added for emphasis):

    "Inclusive Education

    I. Vision

    An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence 

    III. Overarching Principles

    The provision of inclusive public education is based on three complementary principles:

    (1) public education is universal - the provincial curriculum is provided equitably to all students and this is done in an inclusive, common learning environment shared among age-appropriate, neighbourhood peers;

    (2) public education is individualized - the success of each student depends on the degree to which education is based on the student’s best interests and responds to his or her strengths and needs; and 

    (3) public education is flexible and responsive to change.

    Recognizing that every student can learn, the personnel of the New Brunswick public education system will provide a quality inclusive education to each student ensuring that: 

    Student-centered 

    1. all actions pertaining to a student are guided by the best interest of the student as determined through competent examination of the available evidence;

    2. all students are respected as individuals. Their strengths, abilities and diverse learning needs are recognized as their foundation for learning and their learning challenges are identified, understood and accommodated; 

    3. all students have the right to learn in a positive learning environment;


    IV. Accommodation 

    Accommodation means changing learning conditions to meet student needs rather than requiring students to fit system needs. Based on analysis, student needs may be met through individual accommodation or, in some cases, through universal responses that meet the individual student’s 
    needs as well as those of other students.


    The NBACL  now determines education policy and indoctrinates NB teachers and educators but it ignores the principles of evidence based accommodation of individual students and insists on regular classroom placement for all students regardless of needs.  Some may dispute these  points but they are  derived from repeated public statements:

    2012 - David Alward's Admission That Community Living Association Sets Policy and Indoctrinates Senior Government Officials

    New Brunswick Premier David Alward has publicly acknowledged the role of the New Brunswick Association for Community Living related organizations in setting inclusion and disability policy in New Brunswick as was made clear on the community living organizations' IRIS site. IRIS is the Institute for Research and Development and Inclusion in Society. It purports to be the "research" branch of Community Living Assocations across Canada. The IRIS board of directors consists of present and former Community Living Association officials from accross Canada including former NBACL official Lorraine Silliphant.  

    In February 2012 IRIS spent a week indoctrinating high ranking New Brunswick education officials including Deputy Ministers and Assistant Deputy Ministers in the Community Living Association philosophy based policies of full mainstream classroom inclusion as was bragged about on the IRIS web site:

    "
    Premier Alward of New Brunswick acknowledges IRIS’ ‘Policy Making for Inclusion – Leadership Development Program’

    New Brunswick Premier David Alward issued a letter Friday February 4th to all participants in the ‘Policy Making for Inclusion – Leadership Development Program’ that will be delivered in Fredericton by IRIS February 6-10 to senior officials with the Government of New Brunswick. The program is designed to assist policy makers achieve the government’s platform commitment to “enable New Brunswickers with disabilities to actively participate in all aspects of society and take their rightful place as full citizens.” With Deputy Ministers, Assistant Deputy Ministers, Human Resources Directors and Policy/Program Directors from across government participating in the week-long series of leadership development workshops, major strides will be taken towards creating a public service in New Brunswick ready and able to deliver on the government commitment to people with disabilities. In his letter, Premier Alward thanked The Institute “for developing this program to inform our public servants on the latest research on disability and inclusion…” A core resource for the program is the guide to Disability and Inclusion Based Policy Analysis just published by The Institute.

    2013 - NBACL  Trains Principals and Teachers

    "25 FEB 2013 11:00PM

    SCHOOLS AND COMMUNITY LIVING ASSOCIATION PARTNER UP


    SAINT JOHN – Schools in southern New Brunswick are seeking support from the New Brunswick Association for Community Living in training principals and teachers on inclusive education approaches.



    Shana Soucy, manager of inclusive education for the association, said research has shown that without leaders who champion inclusive education, schools have a more difficult time implementing policies to make learning accessible to all students.
    “I think we are doing a lot better with having the kids in the classroom, but are they really included in the lessons or are they just sitting there. We don’t want the segregation in the classroom, we want them to be included in the lesson,” she said."

    NBACL Manager of Inclusive Education Shana Soucy identified problems, with inclusive education in New Brunswick, on the NBACL Blog site:


    Even though Bill 85 was introduced in 1986 stating the full participation of all students in all aspects of school and community life, without regard to their disability or difficulty, we are still coming across many issues regarding exclusion:
    • Segregated classrooms and segregated programs across schools in New Brunswick
    • Modifications and accommodations are not being properly done to students’ lessons as noted in their Special Education Plans in order for them to have success in school
    • Some students are being excluded from school activities (ie: field trips)
    • Students are not only excluded from the regular classroom, they are not able to have lunch in the school cafeteria, instead, having their lunch with other students with a disability and Educational Assistants in the Resource room of the school
    Some of what Ms Soucy describes as "segregated" classrooms  and "segregated" programs" are actually evidence based accommodations of the needs of some students with autism disorders like my son Conor who was overwhelmed in the regular classroom and who receives individualized ABA based instruction which is not assisted by being in a regular classroom with other students.  In other words the NBACL officials who now set education policies and train senior government officials, educators and teachers describe evidence based accommodation of the individual needs of some autistic students, including my son, as segregation, as inclusion "issues".   Ms Soucy insults and attacks accommodations specifically made to help children like my son with severe autism and intellectual disability challenges. 

    NBACL Inclusve Education Manager Soucy's comments about the Resource room are an insult to students like my son who starts his day and has lunch in the resource room and enjoys tremendously his  time at the Resource Centre at Leo Hayes HS.  Ms. Soucy's issues with Resource Centres are not my son's issues.  Following is a picture of my son on St. Patrick's Day, March 17  2011 as he prepared to leave for school to start his day at the LHHS resource center.  He does not feel like he is being excluded or segregated at all.  He is fact being accommodated and enjoys his learning experience:



    My happy, smiling son Conor can't wait to get to LHHS with a 
    resource  center for some  purposes and individual environments 
    for his  ABA based learning.  He also uses resources such as the
     gym, library, and swimming  pool in common with all students. 

    For Conor these arrangements represent accommodation not segregation

    Contrary to Ms Soucy's  non evidence, philosophy based, beliefs Conor loves his time at the resource centre and his so called "segregated" individualized, evidence based, ABA instruction.  Each evening he packs his lunch bag, places it in his school bag and when he gets up places it in front of the door to make sure it accompanies him to school.  These resources have been vital accommodations of his needs as a student with severe autistic disorder and profound developmental delays.  NBACL has clearly targeted for closure resource centers and individual areas of instruction in NB schools. I am very concerned that the fundamental ignorance of the NBACL adherents will deprive my son, and others whose needs are accommodated outside the regular classroom of these very valuable accommodations of their individual needs.
    Imposition of NBACL Icon Gordon Porter's Simplistic, Extreme Inclusion Philosophy on Department of Education and Early Childhood Development 

    Even without the indoctrination of high ranking government officials in a week long inclusion training/indoctrination session based on  Community Living policies, and even without government contracting out "disablity" training of teachers to the NBACL on an ongoing basis, NBACL has exercised a dominant role in the current NB government. Gordon Porter, an icon of the NBACL and federal CACL organizations, was a member of the Alward transition advisory team and subsequently conducted, together with NBCLA director Angela Aucoin,  yet another inclusion review which was not conducted objectively or transparently and simply reflects Mr. Porter's philosophy as stated by him during a Newfoundland appearance and reported in a Western Star article by Diane Crocker:

    "Inclusion in the classroom ‘simple,’ says educator: 




    CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

     Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

    Mr. Porter will forever cling to his belief that inclusion is simple if you just dump everyone in the regular classroom regardless of their needs.  There is nothing simple about autism though and I defy anyone to point to an informed source that would say there is. As the parent of a severely autistic child with profound developmental delays, sensory issues and, like many autistic children, capable of engaging in serious self-injury when overwhelmed I can not allow myself to wallow in such ignorance.  

    The new DSM5 autism spectrum disorder criterion B expressly recognizes highly restricted, fixated interests, excessive resistance to change, abnormal in intensity or focus, hyper-or-hypo-reactivity to sensory aspects of environment, factors which, for some students with autism make the regular classroom an obstacle to learning and a risk to the child's safety:


    Movie theater chains have recognized autism challenges and realities by trying to present sensory friendly showings of some movies.  Self-injurious behavior, (such as head banging and .. hand biting), and responsive (not planned) aggression to others, are recognized as a common problem for many with autism disorders.  The appropriate, evidence based approach to dealing with such issues is to provide a continuum of alternative learning arrangements, meaningful learning and functioning with the environment selected and individualized assessments of students skills and abilities to function within the setting selected,   as described on the web site of the University of North Carolina TEACCH program which has substantial influence in academic and professional autism circles:


    1. The TEACCH program recognizes the important value of preparing all persons with autism for successful functioning within society. Each person with autism should be taught with the goal of successful functioning with as few restrictions as is possible.
    2. Decisions about including children with autism into fully integrated settings must be made consistent with the principle of the "least restrictive environment" as a guiding principle. No person with autism should be unnecessarily or inappropriately denied access to meaningful educational activities. However, it should be noted that the concept of least restrictive environment requires that appropriate learning take place. Placement decisions also require that students be capable of meaningful learning and functioning within the setting selected.
    3. Activities which are inclusive for children with autism should be offered based on an individual assessment of the child's skills and abilities to function and participate in the setting. Inclusion activities are appropriate only when preceded by adequate assessment and pre-placement preparations including appropriate training. Inclusion activities typically need to be supported by professionals trained in autism who can provide assistance and objective evaluation of the appropriateness of the activity.
    4. Inclusion should never replace a full continuum of service delivery, with different students with autism falling across the full spectrum. Full inclusion should be offered to all persons with autism who are capable of success in fully integrated settings. Partial inclusion is expected to be appropriate for other clients with autism. And special classes and schools should be retained as an option for those students with autism for whom these settings are the most meaningful and appropriate.

    Extreme inclusion is not simple, those who truly believe it is do not have actual first hand knowledge of an overwhelmed autistic child who bites his hand in one of Mr. Porter's inclusive classrooms, or one who reacts to the stresses of school and is sent home under police escort; in some instances to face criminal charges.  Inclusion may be simple for Mr. Porter but the simple truth is that he just ignores the evidence, all the evidence, any evidence which contradicts his cherished, fairy tale belief that the regular classroom solves all problems, even evidence of physical and mental harm that results from imposition of extreme inclusion policies on all students regardless of their needs.

    At a Fredericton session during the Porter-Aucoin review discussion focused on integrating early autism intervention services into a smooth transition into the school system. ASNB was not invited to the Porter-Aucoin inclusion review session even though it was our advocacy that resulted in the establishment in NB of evidence based early autism intervention AND in the training of 4-500 education assistants and resource teachers at the UNB-CEL Autism Training program (also established in response to our ASNB parent advocacy) a program recognized by the Association for Science in Autism Treatment as a Canadian leader in provision of evidence based intervention for autistic children.

    I became aware of the meeting and asked to be able to attend.  The discussion went around the table and when it came to me and I tried to speak for the first time I was told by the person conducting the session that they wanted someone else to be given a chance to speak.  I did not understand her statement since I had not addressed the group but I did not object.  The discussion went around the table again and when I tried again to speak I was again told that  they wanted others to be given a chance to speak. I had said nothing during the discussion.  I asked if they wished me to leave and was told no and given a chance to speak although nothing I said was reflected in the report that was issued by Porter-Aucoin.

    As an ASNB rep I advocated persistently for evidence based accommodation of autistic students including those who required learning outside the regular classroom.  During the MacKay review Mr. Porter grew visibly annoyed with me and another ASNB rep Dawn Bowie because of our position.  Mr. Porter informed us that "you people should be thankful for what you have".  I have never doubted since that day that Mr. Porter's attitude toward educating children with disabilities, even children with autism, a subject with which I and Mrs. Bowie were much more learned and experienced, must conform to his everybody in the classroom beliefs.  Neither Mr. Porter, nor NBACL paid officers or representatives have ever deviated one iota from his fanatical obsession with the regular classroom.

    NBACL Dominance in the Alward-Carr Government

    NBACL domination of the Department of Education and Early Childhood Development is clear and indisputable.  Apart from Alward transition adviser Gordon Porter, NBACL Official Krista Carr is the wife of Early Education and Childhood Development Minister Jody Carr. Minister Carr's brother Jack Carr, also a member of the governing Alward Conservatives, is a former NBACL employee.   Danny Soucy is the Minister of Post-Secondary Education, Training and Labour and worked for both the New Brunswick Association for Community Living Inc. and the Canadian Association for Community Living from  1988 to his election in 2010.  Teachers who are most compliant with NBACL inclusion beliefs receive awards handed out by NBACL officials.

    No one openly questions the philosophically based, non evidence based, policies of the NBACL which sets the Alward government's education policies.  Teachers, teacher aides/education assistants and other school personnel have told me off the record for many years, including during the MacKay and Ministerial Committee reviews that they sympathize with my concerns about accommodation of some children with autism, and other students who need an alternative place of learning, but they are unable to speak out.   The message is clear, those who conform to NBACL extreme inclusion doctrine will receive  awards handed out periodically by NBACL, those who don't ... well they have no choice but to conform.

    Conclusion:

    As a lawyer I have represented some students on the autism spectrum who have not been accommodated in the everybody in the classroom fantasy of the current Department of Education/NBACL administration. Some have suffered meltdowns for which they were blamed notwithstanding their known autism challenges.  Some   have been sent home under police escort and some have faced criminal charges.

    The Autism Society of New Brunswick advocated during the MacKay and Ministerial Committee inclusion reviews for an evidence based approach to inclusive education which would see alternative learning arrangements for those who needed them.

    In the current administration  philosophy trumps evidence based accommodation of individual needs.  Some students with autism disorders and other severe learning challenges are paying the price. 

    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. 

    Tuesday, December 25, 2012

    Autism Self Injury and Aggression Can Occur Quickly With No External Provocation

    The pictures set out below this commentary were taken in May 2012 and posted on   Saturday, May 26, 2012 under the title Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash.  I was taking these pictures of Conor enjoying a swing on the playground of his old grade school, Nashwaaksis Memorial School.  It was early Saturday morning, no one else was around; there were no loud noises or disturbances. The weather was pleasantly cool and mild.  Conor was loving his time on the swing and then ... just like that ... he was engaged in self injurious behavior as set out in the last two pictures of this set ... with no external factor whatsoever.  Whatever prompted the head hitting and hair pulling of the last two pics was purely internal. His self injurious behavior in this instance was not an isolated occurrence.  It has happened before and since.  Nor is it always self injurious.  There are times when Conor has been aggressive with his mother and father.  I have  never believed for a second that he actually intends to hurt either of us. Some times he is reacting to external stimuli such as the sound of a phone ringing. It is my belief that when he is aggressive to himself or others he is most often  reacting as he did in these pictures to internal disruptions of some kind.  

    I am not generalizing from Conor's reality to those of other persons with autism symptoms or disorders. I was, from the beginning of my understanding of Conor's condition, and during the early days of my autism advocacy, annoyed with people like Michelle Dawson and Dr. Laurent Mottron whose affidavit evidence as an autism expert supported her application for intervener status when she appeared before the Supreme Court of Canada in the Auton case as an "autistic" to oppose government funded Applied Behavior Analysis treatment for other people's children.  I never accepted that  my son with severe autistic disorder and profound developmental delays could be represented even indirectly by this person capable of addressing Canada's highest court. 

    Nor do I subscribe to the unsubstantiated belief that persons with autism are responsible for planned violence like the horror committed in the Newtown massacre by a person rumored to have autism/Aspergers.  I do acknowledge though that, at least in my son's case, unplanned, spontaneous, "reactive" aggression  to use CNN's Dr. Sanjay Gupta's term, can occur and can occur in a flash.  Depending on the setting, for example sitting in the back seat while Mom or Dad are driving, the consequences could be very, very serious.  Even in ideal circumstances such as the Saturday morning playground depicted below aggression, whether directed toward himself or those with him, can be serious and frightening. 

    There may well be persons with autism disorders whose symptoms do not include self injurious behavior or injury to others. Great, I am happy for them.  But the public at large should not believe for a second that it is not present in some persons with autism in ways that are not always present in non autistic persons.  It is, for many persons with autism, a fact of the brain disorder(s) which manifests  in symptoms that we call autism.   Research is needed on the internal causes of self injury and aggression in persons diagnosed with autism. Treatments need to be developed.  Pretending such internally provoked or aggravated aggression is not part of autism won't make these realities disappear. 

    Instead of spending years trying to streamline autism symptoms and disorders into one neat package it would be much more helpful if the aggressive component of the heterogeneity of autism symptoms were acknowledged and addressed through research and improved treatments.