A day can make a big difference in my son’s world of severe autism disorder, intellectual disability and epileptic seizures. Yesterday as I pulled up to his school to pick him up at the end of the day I could hear his voice inside the school and I knew things were not going well. He had been undergoing a very serious meltdown and I won’t go into all the details. Today though, 24 hours later I pulled up to the same location and before I turned the corner I could see him at the basketball net. I stopped pulled my (Read more…)
In the picture above, taken 3 years ago my son erupted in sudden self injurious behavior smashing himself violently in the head a split second after he had been on the swing at his old grade school, Nashwaaksis Memorial School; a split second after he had been very smiling and happy. I captured the image because it was a series of pictures taken with an “athletic” setting on my Canon camera to capture his until then joyful, smiling activity on the swing. In the commentary below from my January 19, 2008 commentary on Facing Autism in New Brunswick, “Autism Disorder (Read more…)
My Son Conor Wore The Blue on World Autism Awareness Day I understand some of the criticisms of the day and of thinking that wearing a color in itself creates autism awareness but as long as people raise real autism awareness of the challenges of autism disorders and the related conditions from which so many suffer including self injurious behavior, intellectual disability, epilepsy and depression; that’s all I look for and it is what I try to do 365 days a year. Caring for, advocating for, fighting for my son with severe autism disorder, intellectual disability, tonic clonic (Read more…) . . . → Read More: Facing Autism in New Brunswick: Severe Autism With Intellectual Disability And Epilepsy Can Be Tough But It’s Still a Wonderful World
Monday, February 9, 2015 is the first International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) scheduled to occur annually hereafter on the second Monday in February to promote epilepsy awareness around the world. Epileptic seizures are much more common among persons with an autism spectrum disorder than among the general population and parents of children with a newly diagnosed autism disorder should discuss the possibility and care implications of autism with their medical advisers. The autism and epilepsy connection is discussed on (Read more…) . . . → Read More: Facing Autism in New Brunswick: Autism Disorders and the 1st International Epilepsy Day, February 9, 2015
The Autism Society Canada web site was down briefly and I had hoped, notwithstanding past experience, that the ASC would have started presenting an accurate picture of autism disorders to the Canadian public and families with autism disorders. My hopes, faint as they might have been, were dashed again. ASC, on its “new” web site face, once again misrepresents autism disorders by hiding some harsher facts, in particular the fact that as much as 50% (World Health Organization) of persons with autism disorders also have an intellectual disability:
“Q: Do persons with autism always suffer from intellectual (Read more…)
Credit (or Discredit) Carnegie Mellon University What’s Wrong With This Picture? It Omits 50% of The Autism Spectrum, Those with Intellectual Disability The picture above, credit (or discredit) to Carnegie Mellon University, is from a Science Daily review article Brain representations of social thoughts accurately predict autism diagnosis which reviews an MRI study published in PLOS ONE, December 2014, Identifying Autism from Neural Representations of Social Interactions: Neurocognitive Markers of Autism, purporting to demonstrate different brain responses to social interaction stimuli in what are described as “autism” brains as compared to control brains of persons without autism. The (Read more…)
I will not pretend, I will never pretend, that autism is just a different way of thinking. Heather and I love our son too much to lie to the world about the nature of his autism realities, his severe autism, intellectual disability and epileptic seizures. Like many parents of autistic children I believe it is in his best interest that the world knows the realities of the complex disorder he endures and that often causes him to suffer and puts his life at risk. I can face his autism realistically while appreciating every ounce of the joy he himself brings (Read more…)
The DSM5 is certainly open to criticism; particularly in its combining of the pervasive developmental disorders into one Autism Spectrum Disorder ignoring the very large numbers of persons with DSM-IV Autistic Disorder who also suffer from Intellectual Disability. One point which did make sense in the Autism Spectrum Disorder diagnostic criteria though is the one that is routinely ignored by those who glorify autism disorders … Criterion D (underlining added): Diagnostic Criteria for 299.00 Autism Spectrum Disorder D.Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. The subscribers to the irrational view that (Read more…) . . . → Read More: Facing Autism in New Brunswick: DSM5 ASD Criterion D: No Clinically Signifcant Impairment in Current Functioning = No Autism
JAMA study points out US lifetime costs of care for a person with autism disorder and intellectual disability will approximate $2.4 million US (ASD W/Out ID #1.4 million). For children special education and parental productivity loss were largest cost components. For adults residential care, supportive living accommodation individual productivity loss and much higher productivity costs contributed to the highest costs.
Costs of Autism Spectrum Disorders in the United Kingdom and the United States
Results The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was $2.4 million in the (Read more…)
. . . → Read More: Facing Autism in New Brunswick: JAMA Study: $2.4 Milliion (US) Lifetime Cost of Care for Person with Autism and Intellectual Disability
Two and a half hours ago Conor suffered his 3rd Tonic Clonic or Grand Mal seizure. (He also suffered an episode of rhabdomyolisis, a serious adverse reaction to his previous seizure medication). On the previous 2 seizures Conor was in a room by himself when they started, this time he was with me in the living room after we had returned, together with his mother, from a trip to the Superstore. I sat down in a chair in the living room and Conor came in and fell backwards like a tree falling in the woods. Fortunately he fell into a (Read more…)
CNN which loves to portray high functioning autism and Aspergers as autism has done it again with a feature called “Autism Is Growing Up” which … of course … features only adult persons with High Functioning Autism and Aspergers. In fact CNN and its accomplice Francesca Happé present 7 full stories of persons with high functioning autism and Aspergers. In addition an 8th adult with Aspergers, Canadian Zoey Roberts, is featured on the opening page of this creative portrayal of Aspergers as autism telling people that “autism is not a tragedy” which of course it isn’t if you happen to exist on (Read more…)
Conor a year ago at the local ICU where he stayed for 6 days while the ICU professionals worked to save his life and return him to us in good health after a serious adverse reaction to his seizure medications. Other parents of children with severe autism disorders and intellectual disabilities should be made aware that their children are at very substantial risk of seizure activity particularly with the onset of adolescence. We didn’t know these well established relationships with any certainty until our son started experiencing them. April 2 will be another World Autism Awareness Day in which (Read more…)
A Stanford study which excluded autistic subjects with intellectual disability is being used to spread the false notion that autism is not a disability … just a difference. This misrepresentation of autism disorders appears in the August 16, 2013 San Jose Mercury News (I added the underlining, HLD): “Autistic kids with math abilities show different brain patterns By Lisa M. Krieger firstname.lastname@example.org “Stanford researchers have unearthed clues about the formidable brains of some autistic children, suggesting that the diagnosis may signal a different cognitive style, not disability. Superior math skills were found in autistic Bay Area children with (Read more…) . . . → Read More: Facing Autism in New Brunswick: Stanford Study Provides False Hope For Many Parents, Misrepresents Autism Disorders By Excluding Subjects With Intellectual Disability
SFARI blog article depiction of a resting “Autism” brain accompanying review of study employing only Aspergers subjects as representing “autism” for comparison with non autistic resting brains SFARI continues its agenda of misrepresenting high functioning autism/aspergers only studies as representing “autism”. It has published, on its blog page, several study reviews employing only high functioning autism or Aspergers subjects as “autism” studies, knowing that the “Autism Spectrum Disorder” is marked by substantial variation, complexity, heterogeneity. The World Health Organization, September 2013 indicated that 50% of persons on the “autism” spectrum also have intellectual disabilities. The fact that intellectual disability is (Read more…)
I have been trying to read, and understand, literature about autism disorders since my son was diagnosed with an autism disorder almost 16 years ago. (Many would undoubtedly suggest I have far to go in development of that understanding). In the last few years I have begun to try and read and learn more about epilepsy and seizures, largely because of my son’s apparent seizure activity confirmed by two classic grand mal seizures in the past 15 months. An article on recent Companion of the Order of Australia recipients, recognizing accomplishments in their fields of a number of Australians (Read more…)
The Simon Foundation Autism Research Initiative, SFARI, continues to represent studies involving only high functioning autistic participants to the public as “autism” studies. In the Children with autism have trouble recalling memories article posted January 3, 2014 SFARI reports as an “autism” study a study which excluded as participants the 50% of those with an Autism Spectrum Disorder who also have an intell5ectual disability (World Health Organization estimate, September 2013):
“Children with autism have trouble recalling memories
Laura Geggel 3 January 2014 Children with autism struggle to remember details of events from their own lives, reports (Read more…) . . . → Read More: Facing Autism in New Brunswick: SFARI Continues Misrepresenting High Functioning Autism Only Research As "Autism" Research
Emily Willingham argues that persons like my son, with severe autism disorder and intellectual disability, should remain invisible with the focus on those with “pure” autism and no intellectual disability
SFARI has done Emily Willingham a favor, allowing her to use their site as a platform to further her efforts to render invisible the realities of life facing those with severe autism disorders and intellectual disabilities. Willingham has no professional expertise in autism disorders on which to base her opinions. Nor, as the parent of a high functioning autistic child, does she have any personal, real life experience on which (Read more…)
As the father of a 17 year old young man with severe autism, intellectual disability and epileptic seizures I am very happy to read that 15 year old autistic boy Louis Martin was found safe in Montreal after being reported missing by his father (who also tweeted his son’s disappearance). Wandering is a very serious problem for persons with autism, particularly when they also suffer from “comorbid” intellectual disability. It is long past time that everyone including mainstream media, Hollywood, television and autism “experts” stopped glorifying those with exceptional talents and started presenting full, honest pictures of autism disorders. (Read more…) . . . → Read More: Facing Autism in New Brunswick: Great Autism News: 15 Year Old Boy With Autism And Intellectual Disability Found Safe
Conor Doherty sporting a big smile after a quick tickle shave adventure with Dad this morning Many famous “autistics” were not diagnosed until they were adults and have turned their diagnoses into good career opportunities: John Elder Robison, Michelle Dawson, Ari Ne’eman and Mr. Ne’eman’s colleagues, the fellow corporate trustees of the Autistic “Self” Advocacy Network. For these extremely high functioning “autistics” autism is merely a difference not a disorder and they object, some even demonize, parents who talk about autism DISORDERS and seek TREATMENTS and CURES for their autistic children. For my son, who unlike all of the aforementioned, (Read more…) . . . → Read More: Facing Autism in New Brunswick: Severe Autism Disorders: Conor’s Autism Progress: Teeth Brushing and Tickle Shaves!
Autism Speaks has entered into a Research PACT to continue its focus on “pure autism“ (referred to in the PACT as core symptom autism), while ignoring 50% of the autism spectrum, those with intellectual disability (WHO, September 2013):
“Working together, the PACT team is developing a platform of preclinical tests to evaluate and compare new medications for the core symptoms of autism.“
Vivanti and his colleagues offered the term “pure autism” to refer to the tendency of autism studies to intentionally exclude subjects with autism AND intellectual disability:
“the question of the nature (Read more…)
Questions and answers about autism spectrum disorders (ASD) Online Q&ASeptember 2013 Q: Do persons with autism always suffer from intellectual disability? A: The level of intellectual functioning is extremely variable in persons with ASD, ranging from profound impairment to superior non-verbal cognitive skills. It is estimated that around 50% of persons with ASD also suffer from an intellectual disability. The above information is taken from the World Health Organization website page providing Q and A about autism spectrum disorders. Some will always choose to believe that autism and intellectual disability are totally unrelated concepts. It is easier to do (Read more…) . . . → Read More: Facing Autism in New Brunswick: 50% Some WHO Autism Awareness: Autism and Intellectual Disability 50%
“Dr. Lynn Waterhouse @autismideasfail 6 Sep http://bit.ly/17WbZVi #autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX”
The above Tweet by Dr. Lynn Waterhouse, author of Rethinking Autism: Variation and Complexity, who also worked with Dr. Lorna Wing on the APA DSM-III-R diagnostic criteria for autism, should be read by any existing DSM5 committee members charged with developing modifications to DSM-5 diagnostic criteria. The DSM-5 has doubled down on the failed approach of simplifying autism contrary to solid evidence and research. Dr Waterhouse’s (Read more…) . . . → Read More: Facing Autism in New Brunswick: #autism gene AUTS2 tied to dyslexia ADHD epilepsy ID motor delay microcephaly MORE SYMPTOMS should be part of ASD DX
CHEO: No Teddy Bears & No Autism Program for Severely Challenged Children
The Children’s Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.
In an Ottawa Citizen article Don Butler reported:
“CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability.
“Our (Read more…)
“Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date1. Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy2. Most studies peg its prevalence among people with autism at 30 percent. The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children (Read more…) . . . → Read More: Facing Autism in New Brunswick: SFARI Highlights Serious Risk of Epilepsy for Young Children and Teens with Autism and Intellectual Disability
Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of autism spectrum disorders.
Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism (Read more…)