Epilepsy is Common in Persons with Autism and Intellectual Disabilty

 

March 26 is International Epilepsy Awareness Day. Conor was first diagnosed with autism and profound development delay the day after his 2nd birthday. What I didn't know at that time was that persons with autism and intellectual disability are at high risk of having epilepsy as well. Sometimes it becomes apparent in early childhood and sometimes in teen years as was the case with Conor.

Important Autism Related Words: Elopement, Wandering, Bolting.

Important Autism Related Words: Elopement, Wandering, Bolting.

Treatment of Elopement Without Blocking With a Child With Autism

https://journals.sagepub.com/.../10.1177/0145445517740871

 We had our own experience with Conor when he was very young. On one occasion at at family marsh mellow roast at Black Rock Nova Scotia (photo below from Lighthouse Friends). I was talking with relatives and turned and saw that Conor had wandered into the water where waves and undertows are strong. I ran across the rocks in the water and grabbed him. I have no idea why I didn't slip and fall on the rocks.

 

Black Rock, Nova Scotia by Lighthouse Friends

On a second occasion I was home with Conor on a Saturday when I received a call from the International President of a Union for whom I was doing some business. I did not hear Conor slip out of the house and when the call ended & I could not find him I called the emergency line and they told me he was in a nearby service station. A good man in a pick up truck had stopped on Main St Fredericton North and taken him into an Ultramar not far from where we lived. The man waited until I arrived and identified myself. He then left before I could even shake his hand. By this time I figured the elopement was Conor's  autism  related and called a well trained, educated ABA therapist I knew. She worked out a program for him and worked with him and it helped immensely. And to this day I always want to know where Conor is at all times. There is professional literature and news articles reporting on the wandering issues of autistic children and they should be brought to the attention of parents of autistic children, educators and other service providers.

Adult Autism and Related Disorders Care and Treatment in NB? Does it even Exist

 

Adult Autism and Related Disorders Care and Treatment in NB?

Does it even Exist?

Dear Mr. Higgs, Mr. Coon, Mr. Melanson, Mr. Austin:

I sent the adult autism care message included below and shared on Facefook more than 2 years ago. Since then the Ombud Failure to Protect Report has exposed the horrendous conditions at the Restigouche Hospital which includes an alleged "Autism" Unit.

In addition CBC Reporter Karissa Donkin has exposed the employee discipline mess in the Restigouche Hospital. This is an inhumane atrocity which clearly violates the UN Convention on the Rights of Persons with Disabilities including those with Autism Spectrum Disorder, Intellectual Disability and Epilepsy.

I am asking each of you to look at the Children and adults in your extended families and ask if it would be alright for them to be treated like this as they become adults, vulnerable adults.

CLOSE THE RESTIGOUCHE AND BUILD THE AUTISM CENTER & NETWORK FOR RESIDENTIAL CARE AND TREATMENT FOR PERSONS IN NB AT ALL POINTS ON THE AUTISM SPECTRUM OF DISORDERS.

HAROLD L DOHERTY

QE II DIAMOND JUBILEE MEDAL RECIPIENT

AUTISM ADVOCACY

Please begin work on the 2015 NB Autism Spectrum Village Proposal developed by Paul McDonnell, so that my wonderful son with severe autism disorder and related conditions will live a full, humane life and not be banished to one of the inhumane settings chosen by current and earlier governments particularly the Restigouche Psychiatric Centre far, far from most families and far from the internationally recognized autism expertise that has been developing in Fredericton?

The proposal, including the centre, is based on humane, expert principles stated by Paul McDonnell in a 2010 CBC interview:

"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists."

...

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.

Among the reforms that the UNB professor was calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes.

"The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

"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.

New Brunswick has Lost a Kind, Wonderful Person and a Strong Autism Advocate

Above MLA Ernie Steeves who filed  and led the Opposition Motion on Adult Autism Care and Treatment Services and autism advocate Cynthia Bartlett, May 28 2015 

Cynthia Bartlett, a kind, wonderful person, strong autism advocate and member of Autism Advocacy New Brunswick has passed away. I had the privilege of knowing Cynthia and working with her on autism advocacy in New Brunswick including meetings to discuss NB's adult autism residential care needs with 2 New Brunswick Ministers of Social Development, Liberal Cathy Rogers and Conservative Dorothy Shephard. Her obituary and memoriam, including some wonderful family picturesm can be found at Humphreys' Funeral Home web site:

 https://humphreysfh.com/tribute/details/526/Cynthia-Bartlett/obituary.html#tribute-start

The Long Struggle for those with Autism Spectrum Disorder who NEED Humane, Professional Autism Care and Treatment

A FB memory of my visit to Woodstock NB 5 years ago. I met a number of fine persons with autism and family members as well as Sloane Desiree Rees who organized the event and has been a prominent autism advocate. One goal that I and other autism advocates fought for remains to be achieved ... a network and autism centre to provide adult autism residential care and treatment. Numerous reasons exist for why no success has been realized on that point. I hope to touch on those matters in my breakout session at the Atlantic Provinces Autism Conference on November 5.

Dear Mr. Higgs, Coon, Austin, Vickers, Thomason: Stop Hiding, Close the Restigouche Atrocity, Open the Autism Village Network

 

Dear Mr. Higgs, Mr. Coon, Mr. Vickers, Mr. Austin, Mr. Thomason:

I sent the message included below and shared on Facebook 2 years ago. Since then the Ombud Failure to Protect Report has exposed the horrendous conditions at the Restigouche Hospital.  In addition CBC Reporter Karissa Donkin has exposed the disciplinary mess in that hospital.   This is an inhumane atrocity and one which clearly violates the UN Convention on the Rights of Persons with Disabilities. 

This minority government did well in managing the COVID situation in our province with all party leaders, Dr Russell and the citizens of NB cooperating. That doesn't give government the right to continue to ignore serious violation  of the UN COPD; to continue trading the lives of severely challenged adults with autism, Intellectual disability, epilepsy for political gain. 

I am asking each of you to look at the children in your extended families and ask if it would be acceptable for them to be treated like this as they become adults.  Close the Restigouche and build the Autism Center & Network for residential care and treatment for persons in NB at all points on the Autism Spectrum of Disorders.

Harold L Doherty

QE II Diamond Jubilee Medal Recipient 

Autism Advocacy  

Harold L Doherty

September 7, 2018

  · 

Shared with Public

Dear Brian Gallant, Kris Austin, Blaine Higgs, David Coon, Jennifer McKenzie: Will your party begin work on the 2015 NB Autism Spectrum Village Proposal developed by Paul McDonnell, so that my wonderful son with severe autism disorder will live a full, humane life or will he be banished to one of the inhumane settings chosen by current and earlier governments particularly the Restigouche Psychiatric Centre far, far from most families and far from the internationally recognized autism expertise that has been developing in Fredericton? The proposal, including the centre, is based on humane, expert principles stated by Paul McDonnell in a 2010 CBC interview:

"What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists."

...

"In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"Such a secure centre would not be based on a traditional 'hospital' model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development," he writes.

"The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."