Showing posts with label autism spectrum disorder. Show all posts

Autism`s 40% With Intellectual Disability? Auti$m $peak$ Doesn't See YOU, Doesn't Speak For YOU!


Autism Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

Autism Speaks chose not to stand up for the intellectually disabled members of the "àutism community" even though they were  expressly  maligned in the original lyrics:


"Lyrics from the recently released song “Jodeci Freestyle” from hip hop artists Drake and J.Cole have many in the autism community up in arms. The song, which was released last month and is now getting airplay, contains the following lyric by J. Cole: “I’m artistic, you n----s is autistic, retarded." 

These lyrics are offensive and perpetuate negative stereotypes. There are many inspiring individuals with autism and other disabilities who have achieved great success across a variety of artforms, including music. We encourage J. Cole to recognize their talents and learn from the positive example they have set for all of us."

This is not the first time Autism Speaks has chosen to ignore the intellectually disabled 40% while promoting the very, very, very high functioning elite members of the autism spectrum like J. E. Robison and Alex Plank.  There is almost never any mention of the intellectually disabled in promotions and news releases by Autism Speaks or on their web site.  I have previously noted that Autism Speaks has only reluctantly acknowledged the existence of intellectual disability on the About Autism section of its web site burying mention of 40% with ID in the middle of the page, book ended by references to those with high IQs and abilities.

In the "rapper incident" AS went further than just ignoring those with autism and intellectual disability.  They implied that persons with autism, all persons with autism, are in fact talented, successful people.  They were ashamed to mention and defend the 40% with autism and Intellectual Disability.  The rappers have offered sincere apologies and taken steps to address the issue by changing the lyrics.  Rapper J.  Cole even acknowledged the existence of those with severe autism and their families.  By their actions Drake and J. Cole have shown themselves to be ahead, light years ahead of Autism Speaks in caring about ALL persons on the autism spectrum including the 40%  intellectually disabled.  

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Dear Anna Kennedy: Please Stop Misrepresenting Autism, Autism Is A Health DISORDER NOT a Gift


Anyone  described as "having autism" or "being autistic" 
would have received an autism disorder diagnosis 
pursuant, in all likelihood, to either the DSM or the ICD 

Dear Anna Kennedy

My 17 year old son Conor who was diagnosed 15+ years ago with "autistic disorder" (now autism spectrum disorder) and profound developmental delays ( a euphemism for intellectual disability) is truly a gift. Conor brings great joy to our lives as shown on the sample pictures that follow.  While Conor is a joy, however, his autism disorder is not.  Nor is his autism disorder a GIFT or a SUPER ABILITY.



Conor's autism is a disability and a disorder and that is WHY he received a medical diagnosis of autism (autistic disorder).  While there may be some autistic individuals with special gifts he is not one of them.  Conor is one of the 40% of persons with autism and intellectual disability.  As you probably know that combination also makes him more likely to suffer from epileptic seizures and indeed Conor has suffered two grand mal seizures in six months.  He also suffered a life threatening reaction to his anti-seizure medication at the time. Other challenges brought by his autism disorder are wandering, self injurious behavior (self biting and head banging) and obsessive behaviors.  There is abundant literature indicating that those with autism, ID and epilepsy are at particular risk of shortened life expectancy.

Drake and Cole deserve to be admonished for their denigration of persons with autism AND for their denigration of persons with intellectual disabilities.  The solution, however, is not to circulate a petition which claims that autism is a gift or a super ability. In doing so you mislead the public about serious, challenges faced by the vast majority of persons with autism DISORDERS.  If you continue to misrepresent autism to the world you will probably cause harm to people like my son who in fact suffer from their autism disorders.  

I have been advocating publicly in my home province of New Brunswick, Canada for 15 years with other parents and we have achieved some success in ensuring that NB children with autism receive evidence based early intervention and that autistic students receive assistance from autism trained education assistants and resource teachers.  I have visited two psychiatric hospital facilities and met severely autistic adults living out their lives in those institutions and I continue to advocate for modern residential care and treatment options for adults with autism.

Any successes we have achieved, or hope to achieve, are based on presenting accurate, informed, evidence based portrayals of the realities of autism disorders to government decision makers and to the public at large.  Portraying autism as a gift misleads everyone about the real challenges faced by many with these very serious disorders.


Please reconsider your misleading public characterization of autism as a gift and super ability and acknowledge clearly that autism disorders are exactly that ... disorders.  My son is a gift, his autistic disorder is not. 

Respectfully,

Harold L Doherty
Fredericton, New Brunswick
Canada

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DSM-5 Autism Emperors' Ridiculous Assumption


"The fifth edition of the diagnostic and statistical manual of mental disorders (DSM-5) (APA in diagnostic and statistical manual of mental disorders, Author, Washington, 2013) has decided to merge the subtypes of pervasive developmental disorders into a single category of autism spectrum disorder (ASD) on the assumption that they cannot be reliably differentiated from one another."

LY Tsai, M. Ghaziuddin (JADD 2013) DSM-5 ASD Moves Forward into the Past



I agree with the observations of Tsai, Ghazuiddin and Dr. Waterhouse.  I have none of their outstanding academic and research  qualifications.  I am a humble Canadian labour lawyer, the father of a severely autistic 17 year old son, with "profound developmental delays" who has, like 25% of those with severe autism and intellectual disability also suffered from serious grand mal seizures.  My 17  year old son, who I love dearly, whose joyful visage adorns the sides of this blog,  reads at a Dr. Seuss level.  He is not autistic in the manner of a Michelle Dawson who appeared at the Supreme Court of Canada to argue as an "autistic" against the parents from British Columbia who were seeking Medicare coverage for evidence based ABA treatment for their autistic children.  My son is not autistic in the manner of an Ari Ne'eman who graduated from university, founded a corporate entity called ASAN, participates as a member of the IACC and lectures journalists on what it means to be autistic in a meeting of the Washington press corps.

I don't have the academic autism credentials of the distinguished names mentioned above.  I do have credentials as an autism father who has loved and cared for a severely autistic son for 17+ years. I have credentials as an autism advocate who, in my home Canadian province of New Brunswick, has advocated with other parents with success for early evidence based intervention for autistic children, autism trained Teacher Assistants and for the continuation of a tertiary care autism center for NB children and youth when threatened with closure by bureaucratic decree.  In my continuing advocacy for autistic adults I have visited psychiatric hospitals where they have lived in the absence of a residential care system to meet their needs. I have conducted many meetings with other autism parents as the Autism Society New Brunswick and met many autistic children and adults from my son's severe end of the spectrum to the very high functioning "Aspergers" end. 

What my experience, what my daily life for 17+ years has always told me, is that there are vastly different realities facing those on the autism spectrum. There is no evidence justifying the lumping together of these hugely different realities under the label Autism Spectrum Disorder.  To borrow the words of Dr. Waterhouse autism to any reasonably informed observer is marked by heterogeneity and complexity.

As Tsai and Ghazuddin have said the DSM-5 ASD is counter to evidence and is based on the assumption that "they cannot be reliably differentiated from one another."  

That assumption is not just wrong. It is in the humble opinion of this informed autism father a ridiculously false assumption.

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40% Intellectual Disability In Autism Disorders: Coincidence or Consequence?


I have never subscribed to the assumption that Intellectual Disability is a co-morbidity as described by the authors of a new study examining Intellectual  Disability in Autism: (unrelated in etiology and causality from the ASD itself)  I have been frustrated by the historical tendency of  "autism" researchers to exclude intellectually disabled autistic subjects from their research studies.  I am very disappointed with Dr. Lord, Dr. Swedo, Dr. King and other APA members for their efforts to further the artificial disassociation of Intellectual Disability from Autism Spectrum Disorder (s) in the DSM5.  I have always believed, as the father of a severely autistic son with "profound developmental delay", and contrary to the "autism as strength" ideology of Dr. Laurent Mottron and Michelle Dawson, that autism and intellectual disability are inseparable components of my son's condition. I am very pleased to see reports of a new study, as set out in this brief online paper by the authors of that study, which begins to examine the ID and ASD relationship front on and with complete intellectual honesty.  

I hope that the proof of principle resulting from the study  that "ASD symptom severity contributes to the extent to which the environmental input required to support “typical” brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase"  is pursued further and that additional research on this topic is not squelched by the political correctness of those who control autism research funding dollars.

I also hope that researchers study the ID in ASD issue from  different perspectives:  that the ID increases the severity of the ASD symptoms and that ID and ASD are simply different aspects of one condition.   This humble father  does not believe that my son's severe autism symptoms and ID are separate coincidental or "comorbid" conditions.  I am pleased to see these "down under" Austalian researchers joining the ranks of the few with the intellectual honesty and curiousity to study the Intellectual Disability component of autism symptoms and disorders.

Intellectual development in autism spectrum disorders: new insights from longitudinal studies

Giacomo Vivanti1,2*, Josephine Barbaro1Kristelle Hudry1Cheryl Dissanayake1 and Margot Prior1,3
  •   1Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Melbourne, VIC, Australia
  •  2Victorian Autism Specific Early Learning and Care Centre, La Trobe University, Melbourne, VIC, Australia3
  • Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, VIC, Australia
The presence/absence of Intellectual Disability (ID) is considered to be the most critical factor affecting outcomes in individuals with Autism Spectrum Disorders (ASD). However, the question of the specific nature of ID in ASD has received little attention, with the current view being that ID is a comorbid condition (i.e., one that is unrelated in etiology and causality from the ASD itself). Recent advances in developmental neuroscience, highlighting the importance of early exposure to social experiences for cognitive development, support an alternative view; that ID in ASD might emerge as a consequence of severe social-communication deficits on the experience-dependent mechanisms underlying neurocognitive development. We tested this prediction in two independent samples of young children with ASD (Ns = 23 and 60), finding that children with greater ASD severity at an initial assessment were more likely to present with poorer cognitive outcomes at a later assessment, irrespective of initial cognitive level. The results of this proof of principle study suggest that ASD symptom severity contributes to the extent to which the environmental input required to support “typical” brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase.

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CBC News Misrepresents Autism By Omitting Any Reference to Intellectual Disability



In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:
  • Shows no interest in other people
  • May be interested in people, but does not know how to talk, interact with or relate to them
  • Has difficulty initiating and maintaining a conversation.
  • Is slow developing speech and language skills, which may begin to develop and then be lost, or may never develop fully.
  • Has difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
  • Repeats ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting oneself.
  • Has restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea or activity.
As well, people with ASD may have secondary problems such as:
  • Neurological disorders including epilepsy.
  • Gastro-intestinal problems.
  • Fine and gross motor deficits.
  • Anxiety and depression.
Children with ASD develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking."
The only reference to intellectual or cognitive disabilities in the CBC News article is in the last paragraph above which implies that cognitive skills may develop at different rates in conjunction with other skills and immediately mentions possible strengths such as solving math problems.  This is not by any means a clear and accurate representation of the intellectual disability that is present in large numbers of persons with autism. 
The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:
  • Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006.
The CDC estimates are consistent with other estimates of the "co-morbidity" of autism and intellectual disability that I have posted links to on this site.

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

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DSM5 Autism Spectrum Disorder Has Arrived: Are Ari Ne'eman and John Elder Robison Still Autistic?


The DSM5 has been released and is now beginning to impact the world of autism.  Most discussion of the DSM5's New Autism Spectrum Disorder has ignored the effect of the language of mandatory criterion A which will act to exclude from autism diagnosis those with severe intellectual disability. Most of the discussion has focused on the potential exclusionary impact on those who would meet DSM-IV Asperger's criteria.  That being said the DSM5 autism team leaders have assured the high functioning end of the DSM-IV autism spectrum that those currently diagnosed with Asperger's or high functioning autism will not lose their diagnosis.  They will in effect be "grandfathered" in to the new autism spectrum. The answer to this commentary's title question is  therefore NO, Ne'eman and Robison, two very high functioning "Aspergians" will not lose their autism diagnoses.  

Although they will be grandfathered into the new DSM5 autism era will Ari Ne'eman and John Elder Robison and other  very, very high functioning "Aspergians" and "Autistics" remain as credible (in the eyes of mainstream media and Autism Speaks) spokespersons for persons at all points on the DSM5 autism spectrum?  Will persons who routinely appear in high profile media interviews before the Washington press gallery, New York magazines, CNN, CBC, BBC, run successful businesses, establish corporate entities, sit on the boards of directors, participate in IACC meetings  and in some cases raise families be able to speak on behalf of those who meet mandatory  Criterion D of the DSM5 New Autism Spectrum Disorder which states that the social communication and restrictive repetitive symptoms together limit and impair daily functioning?  Can the corporate directors of the ASAN corporate entity, including those with professional and academic backgrounds and some with families, claim to be limited and impaired in their daily functioning in any meaningful way? 

The real answer is that it doesn't matter if they would meet DSM5 autism criterion D.   Convenience is the reason that researchers have so often excluded those with severe autism and cognitive challenges from their studies.  Researchers, like the media, need very high functioning participants and interview subjects to do their autism focused work and earn their pay cheques. Robison and Ne'eman's careers as autism spokespersons/"self" advocates are safe.  Persons at the more severe end of the autism spectrum will remain invisible, hidden from sight, and excluded from research,  while high functioning "self" advocates speak on their behalf.

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Autism and Seizures: Conor's Second Grand Mal Seizure (That We Know Of)





The pictures above were initially posted on this site on May 26, 2012, several months before Conor's 1st known Grand Mal Seizure in November. As I posted then, external conditions were perfect and Conor was enjoying a favorite activity in a favorite location when he suddenly began hitting himself in the head. I don't  know what caused it, Conor lacks the communication skills to explain, but it was definitely internal. Together with many similar circumstances including sudden closing of his eyes and looking blankly into the distance I reported them to his pediatrician as possible seizure activities. The pediatrician did not disagree but did not want to provide medication in the absence of any falling behaviors. Two Grand Mal seizures later and a visit to a neurologist and Conor is just now starting on medication which will hopefuly reduce seizure activity.  

My autistic son's second Grand Mal seizure, of which I am aware, happened when I was in an adjacent room less than 15 feet away this past Sunday. I heard the noises when his seizure began and recognized them this time for what they were. I jumped up immediately, laid him on his side and cushioned his head while his Mom called the excellent 911 emergency responders who took Conor to the local hospital, the DECH, for the excellent care and attention they have have always provided members of our family. (Including me during my recent hospitalization for a major asthma attack). 

 I was scared this past November when Conor suffered his first Grand Mal seizure. I was just as scared this second time. I can't believe that this can happen repeatedly without serious life threatening consequences especially if no one hears him during the night, or if it happens during swimming which he dearly loves. Conor was seen by a neurologist just 4 days earlier and we had, after some base line blood tests were done, started on the low dose end of a progressively heavier medication schedule. Hopefully as the dosage is increased and has time to take effect the seizures will cease. 

Autism, as portrayed by most autism "awareness" groups, is far removed from the reality of severe autism with intellectual disability and sezures/epilepsy. I know it and the APA wizards who contrived the DSM5 ASD know it. Life will be easier for them and the researchers who conduct autism research while excluding those with intellectual disability, a trend which they have followed for many years and which is now condoned by the DSM5. The difficult conditions that are usually found with the severely autistic and make life difficult for autism researchers and clinicians ... intellectual disability, self injurious behaviors and seizures will be reduced substantially by being relegated to the invisible category of intellectual disability in the DSM5. 

I look at the multitude of "autism" studies on Google Scholar and have no idea what most of them involve in terms of autism as a disorder or the serious conditions which are related to the severe forms of autism. I do know that very few of them address the severe realities faced by my son. I do know that when the APA spends several years "recompartmentalizing" the diagnostic criteria for autism and epilepsy to come up with the DSM5 ASD they are doing no one with severe autism any favors. Their efforts and funds would serve a far better purpose if they followed the lead of the emergency responders and hospital staff at the DECH who have treated Conor and cared for him so well. Focus on helping people with autism, particularly those most in need, and save the idle academic curiosity "autism" studies for your retirement.

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World Autism Awareness Day 2014



If past is prologue very little awareness of the harsher realities of autism symptoms will be generated on this WAAD, April 2, 2013.  Next year, in 2014,  and for years thereafter, the streamlined DSM5 autism will also eliminate many on the very high functioning and low functioning ends of the autism spectrum. 

It is unfortunate that in the DSM5 Autism Spectrum Disorder definition the American Psychiatric Association is revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. There is no good reason to wreck havoc on autism research and diagnosis by redefining yet again what we are talking about when we say "autism".  

The autism disorder picture, already muddied and muddled by "self" advocates and others who promote autism as a blessing,  will have even less real meaning as the APA, without any scientific or ethical reason, eliminates the most severe cases of autism from future diagnosis. Autism research, already challenged by previous DSM definition changes and alleged increased awareness, will become increasingly challenged.  

The actions of the APA in redefining autism in the DSM5 reflect the intellectual biases of the APA drafters, are in breach of the "first do no harm" principle and  are unethical. Be aware of that on this World Autism Awareness Day 2013 and prepare for a new autism on WAAD 2014, one that will look much different than the autism about which the world is expected to become more aware today.

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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. 

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UNDERdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities



A study presented at the IMFAR 2012 conference this spring in Toronto, Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilies, seems to provide evidence contradicting the widely propagated assertion that the DSM-IV era has seen autism incorrectly diagnosed as a substitute  diagnosis in many cases of intellectual disability.  Roeyrs and Thys actually conclude that autism is UNDER diagnosed in a large study of persons with intellectual disability.  

If the study results are confirmed it seems likely  the harmful impact of the express, and intentional,  targeting for exclusion of severe intellectually disabled from the DSM5 autism spectrum disorder will be increased to the detriment of those most severely affected by intellectual disability and autism symptoms.  The missing of co-occurring autism disorder in persons with intellectual disabilities, as the authors indicate, could have serious repercussions for their care and treatment.  

2012 International Meeting for Autism Research



Underdiagnosis of Autism Spectrum Disorders in Individuals with Intellectual Disabilities

Thursday, May 17, 2012
Sheraton Hall (Sheraton Centre Toronto)
3:00 PM

H. Roeyers and M. Thys, Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium
Background: Only a limited number of studies examined the prevalence of autism spectrum disorders (ASD) within the population with intellectual disabilities (ID) and even less studies tried to estimate the proportion of missed diagnoses of ASD in individuals with ID. It is however of great importance that the co-occurrence of ASD is recognized with a view to improving the quality of life of individuals with ASD and their social environment.

Objectives: The first goal of this study was to estimate the prevalence of ASD in a very large sample of individuals with ID. A second and equally important goal was to identify the proportion of overlooked diagnoses in various settings for individuals with ID.

Methods: The sample comprised 2798 individuals with ID and 322 individuals with borderline intellectual functioning from the 5 provinces of Flanders, the Dutch-speaking part of Belgium. The mean age was 25.6 years (SD=16.42), ranging from 1 tot 81 years. 52% of the sample was older that 18. Subjects were screened with the Scale of Pervasive Developmental Disorder in Mentally Retarded persons – Revision, a screening instrument with excellent sensitivity and specificity (Kraijer & de Bildt, 2005).

Results: 633 children and adults were classified as having ASD. This is 21.1% of our sample. When the subgroup with borderline intellectual functioning was excluded, the prevalence rate increased to 22.2%. The male-female ratio was 2:1. Occurrence of ASD was higher in subgroups with more severe forms of ID. 40% of the individuals with an ASD classification had no official diagnosis previously and another 22% was only suspected to have ASD. The proportion of supposedly missed diagnoses was significantly higher in females than in males. ASD was also significantly more often overlooked in adults compared to children. In addition, diagnoses were more likely to be missed in case of an associated genetic disorder such as Fragile X or Down syndrome, a comorbid psychiatric disorder or a severe visual impairment.

Conclusions: This is, to our knowledge, the largest sample of individuals with ID that was ever screened for ASD. Our study confirms that a substantial subgroup screens positive for ASD and that the diagnosis is often missed. Late diagnosis, or the failure to diagnose at all, may have unfavorable and long-standing effects for those affected and their families. For professionals in facilities and schools for individuals with ID it would seem important to bear the possibility of co-occuring ASD in mind. The recognition of ASD could lead to a better understanding of the overall problems of the clients and to more appropriate care and treatment.

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Medicare's Orphans: Jean Lewis On The Struggle for Autism Treatment In Canada

The video and clip below are from the Medicare for Autism Now web site and feature MFAN co-founder Jean Lewis, one of Canada's foremost autism advocates, providing an articulate, personally informed summary of the struggle for autism treatment in Canada.  

Jean keeps the discussion on a non-partisan level and discusses the fight to end Canada's inhumane and  discriminatory exclusion of treatment for those with autism disorders in the context of other historic struggles for liberation from discrimination based on race and gender. A very important point to remember in Jean's message is that such struggles are never overnight affairs.  They are essentially political wars which involve many battles before the wars are won.  

For those of us who are parents it is difficult  but it is, and always will be, necessary to stay engaged in the battles, to continue the fight and to assist newcomers who need to join the political armies fighting for a humane, Canadian  government to fulfill the promise of Medicare of which Canadians are justifiably proud  and ensure coverage of evidence based treatment for autism disorders. 

Jean Lewis, co-founder of Medicare for Autism Now and Civil Rights Now and co-producer of Medicare’s Orphans discusses the purposes of the film — which are provide a detailed history of the autism treatment movement, and to help maintain momentum in the campaign for justice.

 

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