Showing posts with label World Autism Awareness Day. Show all posts

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.

Posted in , , , , , , , |

Canada's World Autism Awareness Day Act: Great Preamble, Zero Action


On November 1, 2012 Canada passed An Act respecting World Autism Awareness Day an Act with a great preamble which provides for absolutely no action to ensure that effective evidence based early intervention for autism would be provided to all Canadian families affected by autism spectrum disorders.  

Talk, and rhetoric, is cheap.  Intervention is not. Failure to provide intervention and services is not cheap.   The human and financial costs of failing to take effective autism action continue to rise across Canada. 
60-61 ELIZABETH II

——————
CHAPTER 21
An Act respecting World Autism Awareness Day
[Assented to 1st November, 2012]
Whereas autism spectrum disorders affect a significant number of families in Canada;
Whereas Canada has a health care system and social safety net to prevent illness and serve citizens;
Whereas Canadian families affected by autism spectrum disorders have unequal access to services across the country;
Whereas worldwide the number of diagnoses of autism spectrum disorders is growing;
Whereas a greater awareness of the importance of early diagnosis and treatment for people with autism is required to engage more Canadians in helping their fellow citizens;
Whereas early intervention in the treatment of autism spectrum disorders can have promising results and help people engage with and contribute to society;
Whereas there is no known cause or cure for autism spectrum disorders;
Whereas 192 United Nations representatives agreed that World Autism Awareness Day would draw the attention of people across the globe to this neurological disorder that is affecting an increasing number of families;
Whereas in 2007 the United Nations General Assembly designated April 2, from 2008 on, as World Autism Awareness Day;
Whereas Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities, which maintain that children with disabilities should enjoy a full and decent life in conditions that ensure dignity, promote self-reliance and facilitate their active participation in the community, while also enjoying all human rights and fundamental freedoms on an equal basis with other children;
And whereas Canada is a member of the United Nations and supports the work of this vital international organization;

Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

SHORT TITLE
Short title
1. This Act may be cited as the World Autism Awareness Day Act.

WORLD AUTISM AWARENESS DAY
World Autism Awareness Day
2. Throughout Canada, in each and every year, the second day of April shall be known as “World Autism Awareness Day”.
Published under authority of the Senate of Canada

Posted in , , , , , , |

Jaden Lake's Autism on the Hill Rally - Well Done Jaden!


Edmonton MP Mike Lake, whom I have met (at IMFAR 2012 in Toronto) and communicated with a few times about autism in Canada, have different perspectives on the proper role for Canada's national government in addressing Canada's autism crisis.  The government of Stephen Harper, of which Mike Lake is a member,  is not a strong supporter of Canada's national medicare system generally and has done nothing to advance in a meaningful way the National Autism Strategy advocated for by former and present opposition MP's Andy Scott,  Peter Stoffer, Shawn Murphy and Glenn Thibeault and by Senator Jim Munson.   I know though that Mike Lake is a dedicated father and a strong advocate for his 17 year old autistic son Jaden, who appears to have many similarities to my own son with autism of the same age.  I enjoy seeing Jaden in television and video appearances and was pleased to read the Ottawa Citizen article about the Autism on the Hill Rally and the pictures featuring Jaden Lake.

Thank you for advocating for autism awareness and services Jaden! Well Done!

Posted in , , , , , , , , , , |

Unfulfilled Promise: Intellectual Disability Ignored on World Autism Awareness Day



Today is World Autism Awareness Day (WAAD). The establishment of WAAD held out great promise of elevating the world's understanding of the realities of autism spectrum disorders and the challenges they present to those diagnosed with one of the Pervasive Development Disorders slotted for merger into the New Autism Spectrum Disorder in the DSM5.  The promise, however, remains largely unfulfilled.  The world has learned to associate autism with the color blue but beyond that the very serious realities of those with autism and intellectual disability, those who are very low functioning, those who are self injurious, those who wonder away, some never to return alive,  are rarely spoken of in the rah rah fund raising promotions which mark the onset of World Autism Awareness Day.  Intellectual Disability, in particular, remains the  elephant in the autism living room, a very large presence of which no one speaks.

Autism Speaks was one of the prime movers in establishing World Autism Awareness Day.  The official Autism Speaks WAAD site describes what autism is in very general terms but makes no mention of the very close association between Intellectual Disability and Autistic Disorder or classic autism with as many as 80 % of all persons with Autistic Disorder also having Intellectual Disability:



What is the intellectual disability component of autism that no one mentions this World Autism Awareness Day?


From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range.



(Catherine Rice et al., Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors, Disability and Health Journal, Volume 3, Issue 3, Pages 202-212 (July 2010)



Autism and intellectual disability: a study of prevalence on a sample of the Italian population.
Psychiatry Unit, Department of Neurological and Psychiatric Sciences, University of Florence, Hospital of Careggi, Florence, Italy. gplamalfa@videosoft.it

Abstract

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.
METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID.

Definition: Autism is a pervasive developmental disorder, first identified by Kanner in 1943. Decades later, Autism came to be viewed as the more severe of the Autism Spectrum Disorders (ASD) which also include Asperger’s Disorder. ASD is a heterogeneous disorder that includes a range of developmental impairments in the areas of social skills, verbal and non-verbal communication as well as restricted or repetitive interests or behaviours.

Symptoms and Impairments:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and
general intellectual functioning is most often below average. Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning.
CDC Medical Epidemiologist Dr. Marshalynn Yeargin-Allsopp - CMAJ Interview 

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.
Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

[Note: Dr. Yeargin-Allsopp's figure of "about 40% with an ID is for the entire Autism Spectrum and is lowered because of the inclusion of Aspergers which, as a diagnosis, excludes ID]

Department of Health & Human Services - Center for Disease Control Counting Autism 

CDC’s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD. This is a prevalence of about one percent of children. These results reflect data collected by CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network in multiple communities throughout the U.S. in 2006. 


Estimates are based on health and education records from participating communities, which includes eight percent of the U.S. population of eight year olds. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.
...
Cognitive Functioning (from the pdf version)

2004
 

From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).

2006
 

From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test reults on intellectual ability for at least 75% of the children identified)
A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 

...

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases. 

F84.1 Atypical Autism

A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.
Includes:
* atypical childhood psychosis
* mental retardation with autistic features

Posted in , , , , , |

Wretches and Jabberers Review "Disabled Doesn't Meant Dumb" - Is It OK For Higher Functioning Persons with Autism to Mock Intellectually Disabled?


"Disabled Doesn't Mean Dumb" is the title of an Associated Press (John Curran) review of "Wretches and Jabberers" published online in the Washington Times. W and J is said to be a documentary by Tracy Thresher and Larry Bissonnette, 2 non verbal persons with autism who have been able to communicate via augmentative technologies including equipment which converts typed messages into voice communication.  The two were presumed to lack intelligence because of their inability, prior to the introduction of the augmentative technology, to communicate. Now they are sought after as speakers and field questions about autism including autism and intelligence:

"For 10 years, Mr. Thresher and his friend Larry Bissonnette, 53, have been advocates for people with autism and the disabled community at large. They are about to get a new platform for spreading their can-do message: They are the focus of “Wretches and Jabberers,” a documentary film opening in 40 cities that makes the point that “disabled” doesn’t mean “dumb.”"

The message seems to be a positive one for the most part in that they are using their life stories, and humor, to let the world know that some non verbal people with autism may be quite intelligent.   The substance of the  review though suggests that the documentary will  also assist those who wish to pretend, contrary to several credible professional reviews,  that intellectual disability is not related to Autistic Disorder as it is currently defined.  The Intellectual Disability characterizing 80% of persons with Autistic Disorder is just another autism "coincidence". The article title is not necessarily theirs but it does seem to reflect the implicit message of the documentary, as reviewed,   that it is OK to mock those with intellectual disabilities.

As World Autism Awareness Day approaches the Intellectual Disability of the vast majority (as described  by CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp  ) of those with Autistic Disorder will again be pushed further and further out of sight.   After all Thresher and Bissonnette are "not dumb" and therefore all non verbal persons with autism disorders are "not dumb" ... not Intellectually Disabled.  

Posted in , , , , , , , , |

Will The Intellectual Disability Elephant In The Autism Room Be Mentioned On World Autism Awareness Day?



From 30% to 60% of children with an autism spectrum disorder (ASD) have an IQ measure that falls in the intellectual disability (ID) range.


(Catherine Rice et al., Risk for cognitive deficit in a population-based sample of U.S. children with autism spectrum disorders: Variation by perinatal health factors, Disability and Health Journal, Volume 3, Issue 3, Pages 202-212 (July 2010)

The above range refers to the entire range of Autism Spectrum Disorders including Aspergers whch, by definition, excludes anyone with an intellectual disability. If you exclude Aspergers from the calculation then you are looking at a figure similar to the 80% figure referenced for non-Aspergers autism referenced in the 2006 Canadian Senate brief of the Canadian Psychological Association.  Yet we continue to ignore intellectual disability in our public discussion of autism.  Intellectual Disability is very much the elephant in the autism room.

One aspect of autism awareness events that puzzles me about autism awareness events is the extent to which they don't really raise awareness about the realities of autism disorders.  In many cases there will be no mention of the fact that autism disorders are exactly that ... disorders ... diagnostic categories listed in the Diagnostic and Statistical Manual of Mental Health Disorders of the American Psychiatric Association.  As the father of  a son with Autistic Disorder and "profound developmental delays" .... intellectual disability .... I have long been annoyed by the persistent attempts to hide under euphemisms like "profound developmental delay" and under blurred professional terms like "co-morbidity" the obvious fact that Autistic Disorder is actually a form of intellectual disability.  I am not just talking about IQ test scores although I am not a member of  the trendy IQ scores don''t count crowd.  Serious functional impairment in daily life is a real characteristic of Autistic Disorder. 

With news that the DSM5 would formally combine Aspergers with Autistic Disorder and PDD-NOS into the New Autism Spectrum Disorder the media rushed to report that some with Aspergers were concerned about being lumped together with the "other" autism categories, the categories which included those with Intellectual Disabilities.  No discussion of, absolutely no discussion, occurred, outside of this humble blog, about the possible negative  impact on the many with Autistic Disorder and Intellectual Disability of having the Intellectual Disability aspect of autism hidden further from public view.

Don't hold your breath while you search for information about Intellectual Disability and Autism on World Autism Awaerness Day.  On World Autism Awareness Day you are unlikely to find any mention of this important aspect of autism reality.  Unless you check this blog, Facing Autism in New Brunswick.  

Posted in , , , , , |

Search

Swedish Greys - a WordPress theme from Nordic Themepark. Converted by LiteThemes.com.