Tuesday, July 29, 2014

Mother and Severely Autistic Son Evicted by Fredericton Non-Profit Housing Corporation Will Be Homeless Friday, August 1




"People with Autism Spectrum Disorder may be overly dependent on routines, highly sensitive to changes in their  environment, or intensely focused on inappropriate items. ... the symptoms of people with ASD will fall on a continuum, with some individuals showing mild symptoms and others having much more severe symptoms"
American Psychiatric Association, Autism Spectrum Disorder Fact Sheet 
 [Underlining added for emphasis - HLD]

Mistie Delorey is a single mother currently residing in a property of the Fredericton Non-Profit Housing Corporation.  Her son  with severe autism will turn 7 two days from now, on July 31, 2014,  the day before  he and his mother will be  forced to leave the premises where they have been living over the past year after receiving an eviction notice from the Fredericton Non-Profit Housing Corporation; the day before Cameron's routines are broken and his environment is changed completely. 

The letter of eviction received by Mistie Delorey did not provide a reason for the termination.   In fact she was not behind in her rent, there was no property damage in the home in which she and Cameron have resided, there were no assaults,  and she was well liked by the neighbors.  She is a mother who has been doing a fine job dealing with the challenges of raising a severely autistic son by herself.

Mistie Delorey tried to discuss the recommended, but not mandatory, Tenant’s Insurance with the FNPHC property manager who did not take well to that effort. The volume rose and during this time Mistie’s son Cameron who was present  began kicking the wall;  one of his severe autism behaviors.   Allegations were made against Mistie to the Fredericton City Police by the property manager. The Police also however received Mistie’s side of the story and did not proceed with any charges. Mistie and Cameron are being evicted “without cause” to use legal terminology. No reasons were given in the notice of eviction. 


The eviction is likely to cause harm, potentially serious harm, to her severely autistic son.  This is not idle, ill informed, speculation.  Well informed medical personnel have already indicated that for autistic children generally, and for Cameron in particular, the disruption in his routines, in his life, could have serious repercussions and this has been made known to the Executive and Directors of the Fredericton Non-Profit Housing Corporation.  As it now stands Mistie Delorey will be homeless and her son will be taken from her on August 1 the day after his seventh birthday.

Numerous agencies have made their services available to plead on behalf of Mistie and Cameron including MLA Troy Lifford, the New Brunswick Community Living Association, a church elder, a City Councillor,  Cameron’s health care specialists and neighbors who wrote letters supporting Mistie and her son Cameron.  Several government departments and agencies held discussions with the FNPHC Board.  Brief extensions were obtained but the decision to evict stands.

New Brunswick has made many gains in early autism intervention and school services over the past dozen  years.   With the eviction of Mistie and Cameron Delorey without cause by a Non-Profit agency without regard for the impact on a severely autistic son it has taken a huge step back.

Monday, July 21, 2014

It's Still "Gotta Be Genetic" as Autism Genetic Research Re-Invents Itself Yet Again


  
National Institute of Environmental Health Sciences:  Gene-Environment Interaction: Nearly all diseases result from a complex interaction between an individual’s genetic make-up and the environmental agents that he or she is exposed to.

Genetic research has maintained a near monopoly over autism causation research dollars for many years and with that financial monopoly the belief that autism disorders are necessarily genetically caused or triggered. If holes appear in existing gene theories of autism causation the autism research world regroups and sends up a new model.  As always with autism research "its gotta be genetic" - Teresa Binstock, 1999, IGNAZ SEMMELWEISS and AUTISM: when prevailing paradigms resist change. The CBC reports on the latest model arising from the large Swedish study in Autism linked primarily to common gene variants:

"The latest research suggests genetics are the single greatest factor in whether someone develops the condition, accounting for about half of the cause.

Crucially, though, according to the study from Swedish and American scientists, most of the genes underlying autism disorders aren't beset by rare mutations, but are common variants found in the general population.  

"Although each exerts just a tiny effect individually, these common variations in the genetic code add up to substantial impact, taken together," study co-author Joseph Buxbaum, a professor of medicine at Mount Sinai medical school in New York City, said in a statement. 

That represents a change in thinking from early genetic studies of the condition, which focused on rare glitches in the DNA of people with autism disorders."


To this humble autism dad  if the genes underlying autism disorders are common variants then it suggests that something else ... dare we say it ... environmental factors might be involved.  Maybe our wizards of autism research could start actually meaning it when they talk about gene environment interaction.  Maybe they could also stop arrogantly dismissing the work done by the few autism researchers who have focused on environmental factors that might contribute to autism disorders ... people like Irva Hertz-Picciotto Ph.D., UC Davis M.I.N.D. Institute Researcher, and Dr. Joachim Hallmayer associate professor of psychiatry at Stanford University in California. Maybe they could listent to the National Institute of Environmental Health Sciences and develop a research paradigm that reflects gene environment interaction.

Sunday, July 20, 2014

Why ABA for Autism? Because Children with Autism Disorders Deserve Evidence-Based Intervention and ABA Meets That Standard




Autism Canada Foundation, a Canadian autism charity,  promotes itself as "The PREMIER Resource for Information on Autism Spectrum Disorders" but  typically downplays the importance of evidence support for ABA as the Premier autism intervention while promoting interventions with less substantial  evidence bases as determined by study and  credible authorities.

 Why criticize Autism Canada Foundation an autism charity? Why ABA for Autism? Why Evidence Based Intervention?  Because, as stated by Couper and Sampson in the Medical Journal of Australia 11 years ago,  ineffective therapies, while they may be immediately harmless, waste the child's valuable therapy time and parents' money.  Delay in implementing effective treatment may have a negative impact on the child's ultimate outcome.  ABA is the only intervention to date that meets the evidence based standard in every credible review, a fact downplayed by the Autism Canada Foundation.

ABA has for many years been confirmed by study and credible authorities as  the most substantially evidence based effective autism intervention.  If parents choose to try other methods they should in fact make informed choices. Autism Canada is a charitable organization which will be staging an autism conference this October called Changing the Course of Autism 2014.  The brochure highlights RDI and the Son-Rise program but makes no express mention of  Applied Behavior Analysis.  

As the following credible reviews indicate RDI and Son-Rise are not supported by the same level of evidence of their effectiveness as ABA ( I can't find any authoritative review mentioning any level of evidence  support for Son-Rise).   What the Autism Canada conference attendees are unlikely to be informed is that when it comes to autism therapies it  is not a close call - ABA was and remains the most substantiated, evidence based, effective autism intervention. 

The US Surgeon General, the MADSEC Maine Administrators of Services for Children with Disabilities (Maine Autism Task Force) Report (2000 revision),  American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, and a recent article in the Canadian Medical Association Journal all confirm ABA as the most effective autism intervention (specific treatment necessary for associated medical conditions - eg. seizures, gastro intestinal).  And as Couper and Sampson wrote ... Children with autism deserve evidence based intervention:

1. Couper and Sampson - Children with autism deserve evidence based intervention.

Children with autism deserve evidence-based intervention  
Jennifer J Couper and Amanda J Sampson
Med J Aust 2003; 178 (9): 424-425.


Jennifer J Couper and Amanda J Sampson, in the 2003 editorial in the MJA, reviewed some of the evidence in support of the effectiveness  of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:

"While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome." 

- [Bold Highlighting Added - HLD]

Couper and Sampson reviewed the evidence at that time (2003) in relation to behavioral treatment for autism:

The early intervention that has been subjected to the most rigorous assessment is behavioural intervention. There is now definite evidence that behavioural intervention improves cognitive, communication, adaptive and social skills in young children with autism. In 1987, Lovaas showed apparent recovery, persisting into adolescence, in nine of 19 young children who received an intensive home-based intervention based on applied behavioural analysis, a scientific method of reinforcing adaptive and reducing maladaptive behaviours.5,6 Subsequent studies also showed that behavioural intervention caused significant, albeit somewhat lesser, gains.7-11 This has modified the orthodox view that autism is always a severe, lifelong disability. Criticisms of the adequacy of the design and power of these studies are being addressed by the multisite Lovaas replication Early Autism Project. The first US site has released data (Wisconsin Early Autism Project).12 Again, after three to four years of intensive applied behavioural analysis intervention, about half the preschool children with autism acquired near-normal functioning in language, performance IQ and adaptability. Ninety-two per cent of intervention children acquired some language. Control children who received special education showed no gains in IQ or adaptability.12

2. American Academy of Pediatrics - Management of Children with Autism Spectrum Disorders, (2007, reaffirmed 2010)

The American Academy of Pediatrics article Management of Children With Autism Spectrum Disorders, Scott M. Myers, MD, Chris Plauché Johnson, MD, MEd, the Council on Children with Disabilities (2007), reaffirmed (2010):


"Applied Behavior Analysis



Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate that the interventions used are responsible for the observable improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow the conditions under which they occur, teach new skills, and generalize behaviors to new environments or situations. ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community. The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40"


As with every other major research review of the effectiveness of early autism interventions only ABA, applied behavior analysis, received the highest rating: E  - Established/Eligible based on evidence.

 4. Canadian Medical Association Journal, Autism spectrum disorder: advances in evidence-based practice (2014)

 An article in the January 13, 2014 issue of the Canadian Medical Association Journal, Autismspectrum disorder: advances in evidence-based practice, confirms what American authorities have told us for decades, from the US Surgeon General to MADSEC and the American Academy of Pediatrics, ABA still represents evidence based, effective best treatment practice while "Research on non-ABA–based treatments is sparse and shows limited efficacy.":

" Autism spectrum disorder: advances in evidence-based practice "What treatments and interventions are available, and are they effective?



 The goal of existing interventions is to facilitate the acquisition of skills, remove barriers to learning and improve functional skills and quality of life.



 Behavioural interventions



  Current best practices for preschool-aged children with ASD include a focus on improving language, cognitive and adaptive skills using applied behaviour analysis (ABA) techniques.58 Applied behaviour analysis refers to the application of empirically derived learning principles(i.e., the antecedent–behaviour–consequence contingency) to produce meaningful changes in behaviour.59 Such strategies are carefully engineered and implemented through a variety of approaches (e.g., discrete trial teaching to more naturalistic learning contexts) to teach skills and reduce problem behaviour. Applied behaviour analysis interventions can be provided in a variety of settings (e.g., home, specialized treatment centres, specialized or public schools) by a range of front-line therapists, ideally supervised by a psychologist or board-certified behaviour analyst who specializes in ASD.



 A recent overview of meta-analyses60 found significantly enhanced outcomes associated with early intensive ABA-based treatment (typically for 2–3 yr) in four of five included meta-analyses (effect sizes 0.30 to > 1); these findings have since been bolstered by a sixth meta-analysis.61 Gains appear to be greatest in verbal intelligence quotient (IQ) and language communication domains,62,63 for children with stronger pretreatment skills, if treatment is started earlier,64 and with greater intensity or duration of intervention. 60–62,64 These gains achieved in various domains have been summarized in a recent Cochrane review.63 Although the overall quality of evidence is low, it is the best evidence available. A recent study in Ontario reported predictors of outcome that account for some heterogeneity in treatment response.65



 A recent RCT supported the efficacy of ABA-based intervention in toddlers by showing improvements in IQ, adaptive skills and diagnostic classification.37 Models vary, notably by how ABA principles are implemented, but everyday contexts (e.g., free play v. “tabletop”) and activities based on the child’s interests (v. therapist’s agenda) have advantages, including greater generalization of learning.66 Questions remain about which forms and intensities of treatment are most effective for which children.



 Research on non-ABA–based treatments is sparse and shows limited efficacy.67 Translation of evidence-based intervention into community practice is being evaluated, including in Canada.68 A key question is whether effective high-quality programs can be less costly and more sustainable; the findings from Nova Scotia are promising.38 Studies of the effectiveness of treatment programs for older children, youth and adults with ASD are scarce. Benefits have been reported for structured teaching practices, including ABA based interventions, for a wide range of skill deficits and maladaptive behaviours.58" [Highlighting added - HLD]


Hopefully conferences such as the Autism Canada Foundation 2014 conference are not seeking to change the course of autism intervention away from evidence based interventions toward largely  anecdotal approaches.  Hopefully attendees and those who access the conference information will be informed of the importance of evidence based support for autism interventions and the level of credible evidence in support of ABA effectiveness, a level of evidence support which remains unmatched by ANY other behavioural, social or educational intervention.

Saturday, July 19, 2014

Dear Canada Autism Spectrum Disorders Alliance: Important Autism News for Your Members



 



 The fight for a REAL National Autism Strategy including Medicare coverage of ABA 
for autism began more than 15 years ago in courts in BC and in  the offices of 
Fredericton MP Andy Scott, joined by Nova Scotia MP Peter Stoffer, former 
PEI MP Shawn Murphy,  and  Ontario MP Glenn Thibeault and has  continued 
under the leadership of the Medicare for Autism NOW! organizaton.




Members of CASDA, the Canadian Autism Spectrum Disorders 
Alliance, might be interested in the strong federal NDP  statement
of commitment to a REAL National Autism Strategy and Medicare 
 coverage of AB for Autism.



July 19, 2014

CASDA Leadership Committee

Cynthia Carroll, Executive Director, Autism Nova Scotia
Laurie Mawlam, Executive Director, Autism Canada Founndation
Richard Burelle, Executive Director, Autism Society Canada
Dave Mikkelsen, Executive Director, Society for the Treatment of Autism
Debbie Irish, Executive Director, Geneva Centre for Autism
Suzanne Jacobson. President, Quick Start
Jill Farber, Executive Director, Autism Speaks Canada

Dear Executive Directors and CASDA Board Members:

I  am a father of a severely autistic 18 year old son with intellectual disability and epileptic seizures.  Although I am not currently a president, member or  executive director of any organization or board I have been actively involved as an advocate provincially in NB for 15 years where we have, in response to focused parental advocacy, one of the earliest  established credible provincial early autism intervention programs and autism trained Education Aides and Resource teachers in our schools.

We also worked during those 15 years with the late Andy Scott, then our Fredericton area MP, towards a National Autism Strategy that resulted in the private members' motion to that effect sponsored by Andy and Nova Scotia MP Peter Stoffer.

I wish to bring to your attention a reply I received recently from the office of the Leader of the Official Opposition, Thomas Mulcair.  The reply is set out in full on my blog Facing Autism in New Brunswick in a July 11, 2014 commentary NDP Continues Strong Leadership for A Real National Autism Strategy.

To save your time though I reprint the reply directly.  It confirms the federal NDP commitment to a real National Autism Strategy including ABA coverage under Medicare:

Dear Mr. Doherty,

Thank you for writing. We appreciate hearing of your advocacy work on behalf of your son and all individuals living with autism spectrum disorders.

Please be assured that New Democrats are determined to help put the needs of Autistic children on the political map. The NDP supports the continuing efforts to create a National Autism Strategy, therefore ensuring that individuals would receive the highest level of care, regardless of which region of Canada they live in.

As you mentioned, NDP MP Glenn Thibeault is helping to provide leadership on this matter along with working to have the Canada Health Act amended to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognized treatments for individuals living with autism spectrum disorders. (http://glennthibeault.ndp.ca/post/thibeault-re-introduces-autism-legislation

Going forward you can count on our team of New Democrat MPs to continue to speak out on this matter. It’s time for leadership that will move Canada forward.

Again, thank you for taking the time to be in touch.

All the best,


Office of Thomas Mulcair, MP (Outremont)
Leader of the Official Opposition

New Democratic Party of Canada

This is, in my humble opinion, very significant news for autism parents and advocates.  The fight for a Real National Autism  Strategy has been a long one, starting at least 15 years ago in NB. It will undoubtedly take much more time but the statement by the current Leader of the Official Opposition is an important step in that struggle.

It would be appreciated if you and your members could advocate directly to your respective MPs and would be MPs and request all parties to make the same commitment made by the New Democratic Party of Canada. If that is too much for your organization to contemplate I ask you all to highlight this important development on all your information sites and members news releases.

Respectfully,

Harold L Doherty,  Fredericton, NB

cc. media, interested parties