"Autism" Researchers Misrepresent Autism Spectrum Disorder by Overwhelmingly Excluding Persons with ASD AND Intellectual Disability

Global estimates indicate 50% of persons with Autism Spectrum Disorder also have an Intellectual Disability yet they are excluded from 94% of "autism" research studies. Media accounts of "autism" typically portray persons with autism as high functioning.  Unfortunately Academic Researchers also often misrepresent autism through selection bias and failure in all cases to provide information indicating a lack of generalization of  the  study. 

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Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis

Ginny Russell 1, William Mandy 2, Daisy Elliott 3, Rhianna White 3, Tom Pittwood 4, Tamsin Ford 1

Affiliations 

• PMID: 30867896
 
• PMCID: PMC6397505
 
• DOI: 10.1186/s13229-019-0260-x

Free PMC article

Abstract

Background: Current global estimates suggest the proportion of the population with autism spectrum disorder (ASD) who have intellectual disability (ID) is approximately 50%. Our objective was to ascertain the existence of selection bias due to under-inclusion of populations with ID across all fields of autism research. A sub-goal was to evaluate inconsistencies in reporting of findings.

Methods: This review covers all original research published in 2016 in autism-specific journals with an impact factor greater than 3. Across 301 included studies, 100,245 participants had ASD. A random effects meta-analysis was used to estimate the proportion of participants without ID. Selection bias was defined as where more than 75% of participants did not have ID.

Results: Meta-analysis estimated 94% of all participants identified as being on the autism spectrum in the studies reviewed did not have ID (95% CI 0.91-0.97). Eight out of ten studies demonstrated selection bias against participants with ID. The reporting of participant characteristics was generally poor: information about participants' intellectual ability was absent in 38% of studies (n = 114). Where there was selection bias on ID, only 31% of studies mentioned lack of generalisability as a limitation.

Conclusions: We found selection bias against ID throughout all fields of autism research. We recommend transparent reporting about ID and strategies for inclusion for this much marginalised group.

Important Information for Allleged "Autism" Researchers

Important information for autism researchers seeking to capture the full autism spectrum of disorders in their studies:

"much of what is known about the older autistic adult population is based on (1) self-report studies, which exclude those without the ability to participate through survey methods (e.g. Lever & Geurts, 2016b; Wise et al., 2017)"

Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults

Adult Autism NB 2020? Will NB Continue to Violate the UN Convention on the Rights of Persons with Disability or Will it ......

Adult Autism Disorders NB 2020? 

Proper Residential Care and Treatment?

Will NB Continue to Violate the UN Convention on the Rights of Persons with Disability of NB adults with severe autism and intellectual disabilities or Will it End the Restigouche Hospital Atrocity, close the Restigouche Hospital and start work on a Fredericton based autism centre with a village of autism specific care homes in communities around the province for adult persons with autism and a variety levels of need of autism residential care and treatment? 

I asked this question of our MLAs in November 2018.  I received no real answer to my question.   

The Ombud Report issued in 2019 "Failure to Protect" provided clear and compelling evidence that  the proposed youth mental health centre which has now been scheduled to be established in Moncton would not provide appropriate services and care.  The evidence in that report confirms confirms that the Restigouche does NOT provide proper services and is not an appropriate setting for adults with serious autism and intellectual disabilities.  

The Karissa Donkin CBC report on disciplinary issues "Violence and threats, negligence, insubordination led to discipline at troubled hospital" also confirms that there are very serious disciplinary issues at the Restigouche which is located on our Northern border as far as possible from our larger populations and far from most NB families. The location  makes it difficult to retain professionals for the Restigouche and to maintain a disciplined, properly trained work force.

In New Brunswick very substantial gains have been made with respect to the provision of health, education and social services to persons with Autism Spectrum Disorders.  Our early autism intervention program has achieved national AND international recognition based on the excellent work of the UNB-CEL Autism program at UNB Fredericton. Teacher aides and Resource Teachers have received autism training from the UNB-CEL program and the Stan Cassidy Centre Autism team provides autism consultations up to age 19. NOTHING however has been done to provide for professional, decent, humane autism residential care and treatment for adults. 

Paul McDonnell Ph.D., and a Canada wide leader in developing evidence based autism treatment,  was a key player in establishing the program which forms the basis of these services and he also, in consultation with parent advocates, developed the NB Autism Spectrum Village Proposal which was presented to the Gallant Government, then Social Development Minister Cathy Rogers, in 2015.  The "Village Proposal" would provide for the establishment of an Autism Centre in Fredericton, the home of NB's current autism expertise and centrally located. The centre would provide training and oversight for staff in homes around the PNB close to families in all parts of the province.  It would also provide, from its central location, permanent residential care for those most challenged by autism and related conditions. 

Think Twice Before Leaving An Autistic, Epileptic, Intellectually Challenged Person Unsupervised While Bathing

Left: Connor Sparrowhawk an autistic, epileptic 18 year old with learning difficulties 

who drowned while suffering a seizure during an unsupervised bath in a UK care facility. 

Right: Connor Sparrowhawk's mother Sara Ryan who testified it never crossed 

her mind that her son would be left to bathe unsupervised

Combined photo from photos on Oxford Mail

A UK mother has testified during a tribunal review of a Doctor's responsibility,  and the role his performance might have played in the death of 18 year old Connor Sparrowhawk an 18 year old autistic, epileptic youth who drowned when he suffered a seizure while taking a bath unsupervised in a UK NHS care facility.  The linked article from Oxford Mail states that Connor Sparrowhawk also suffered from a learning disability.

The doctor involved has admitted 30 professional failures including obtaining his history of symptoms, failure to keep medical records etc. which apparently resulted in Connor's  unsupervised bathing.

Connor Sparrowhawk's mother, Sara Ryan,  is reported to have fought back tears as she testified:

"We just assumed he was being supervised in the bath. It was not something that came to my mind. It was almost one-to-one support on the unit.

"It had a whole team of specialist staff and there were five patients. It just never crossed my mind."

Our son suffers from severe Autism Disorder, profound Intellectual Disability and epileptic seizures including tonic clonic or grand mal seizures.  He has never been left to bathe on his own even prior to his first observed tonic clonic, epileptic seizure.  

When our Conor, now 21,  goes to the bath one of us is with him.   We do not want to lose him.

Deadly Discrimination Against Adults With Autism Disorders Continues In Ontario (and New Brunswick)

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica.

Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties.

People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615

Deadly Discrimination against adults with autism continues in Ontario  despite a new declaration of full coverage for autism for children and youth to 18.   Discrimination against adults with autism is done by governments pushing 2 misrepresentations that are also advanced in the public media by some specific interest groups:

1. By pretending that autism is NOT a life shortening medical disorder.

2. By pretending that autism is a childhood condition that does not extend into adulthood.

With these 2 falsehoods already entrenched in the public imagination it is very easy for governments to ignore the realities that autism is in fact a debilitating medical disorder that shortens life expectancy by 16-30 years for those with high functioning autism (16 years) and those at the lower end of the autism spectrum (30 years).  Policies aimed at providing the adult care required for so many with autism are simply non existent in Ontario, New Brunswick and most of Canada.

Deadly Discrimination against autistic adults also continues  in NB.  NB has been recognized internationally as a leader in early autism intervention.  We have also seen education aides specifically trained in autism.  But, as in Ontario autistic adults are simply ignored by our provincial governments. As in Ontario autistic adults can expect shortened life expectancy shortened by 16 to 30 years.   Discrimination against autistic adults in NB is deadly.

It is impossible to say whether those with shortened life expectancy could be restored to the general average with proper care, education and treatment throughout adulthood.  What is certain is that shortened life expectancy will continue if nothing is done to address the challenges of adults with autism.

At the high functioning end of the autism spectrum depression and resulting suicides are a primary cause of the reduced life expectancy.  At the lower end the epilepsy and seizures that are present in a large percentage of those with autism and cognitive disability are a primary cause.

What could make a difference in either case? Access to counselling and support and intensive residential care and treatment of autism and epilepsy would certainly improve if not totally restore to general population levels the life expectancy of persons with autism disorders in NB, in Ontario, and elsewhere in Canada.

Another Conor Seizure This Morning, Another Reminder of His Shortened Life Expectancy

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

I was reminded, yet again, of my son Conor's shortened life expectancy as summarized in the BMJ article above, when he suffered a tonic clonic, "grand mal" seizure shortly after 5:30 am. I sleep on a couch in the living room, which is near Conor's room, in the hope that if he suffers a seizure during the night I will hear him and can go to his aid. This morning I was up at 4:45 when he went to the washroom before going back to bed. He was smiling, in great spirits. 45 minutes later I heard what I first thought were laughing noises but quickly thought they seemed odd and I jumped up and went to his room where he was sitting up in a soft backed chair (where he often sits when waking before his 6:01 time for coming out of his room). He was in full convulsions with saliva coming out of his mouth and was not conscious. I was able to pull him up straight so he could clear his throat more easily and tilted is head a bit to his side It took awhile before he could respond to me verbally. He is still a bit tired but has had his meds, breakfast, time on "red computer" and is lying on the cozy couch watching Winnie the Pooh's Grand Adventure.

There is More to Real Autism Awareness than Pretty Blue Lights - 4 Years Ago We Almost Lost Our Buddy, Our Autistic Son Conor

Conor at the Intensive Care Unit of the Doctor Everett Chalmers 

Hospital, Fredericton, April 2013 when his life was at serious risk

from an adverse reaction, Rhabdomyolisis, to his seizure meds.

April, Autism Awareness Month has come and gone and to my knowledge little to no real awareness has yet been raised about the serious risks faced by those with autism spectrum disorder particularly those with intellectual disability and in much higher rates than among the general population ... seizures and the medications to treat seizures.  4 years ago as I was reminded by a Facebook reminder notice we almost lost our autistic son Conor to an adverse reaction ( a condition which was diagnosed by the treating hospital ICU team as Rhabdomyolisis)  to his seizure medication.  Conor's conidtion fits the model described in the following BMJ article.  Severely autistic, combined with learning difficulties which also fits him with the very high 20-40% of persons with autism who also suffer fro epilepsy.  The harsh reality staring Conor and all of us who love him is that persons in that group severe autism, learning difficulties and epilepsy die as much as 30 years sooner.   Not the type of autism awareness you generally hear about in the blue light autism is beautiful blend of autism "awareness".

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

"Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!

 http://autisminnb.blogspot.ca/…/conor-is-safe-now-but-we-al… In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity. Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012. Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed. Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU. Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be. Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.

To everyone involved with protecting and saving our buddy Conor his Mom and Day say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy"

Autism awareness should create awareness of the serious, life threatening conditions commonly associated with autism disorders and limiting life expectancy by 16 to 30 years

We were fortunate to have access to excellent medical care and attention from the ICU and Emergency teams, their supporting staff and our family doctor,  To all of them I say once again THANK YOU FOR SAVING OUR SON's LIFE. 

To everyone involved with "Autism Awareness" events though I say start teaching the public about all aspects of autism disorders including some of the most frightening realities.