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."

NB MLAs: NB's Adult Severe Autism Health Crisis & the Need for An Autism Village Network Treatment and Care Model

                   Sudden severe, migraine pain can accompany Autism   with Intellectual Disability  and Seizures.  

                       Members of the New Brunswick Legislature and NBers                            with Interests in Autism Disorder

NB's  Adult Severe Autism Health Crisis & the Need for An Autism Village Network Treatment and Care Model

In 2008 I was a member of the Autism Society NB when we drafted a submission to the NB government on youth and adult residential care and treatment.   Included in that submission was a statement that NB needed an adult autism residential care and treatment network including a centre for those most severely affected by autism and related disorders.  

In 2015 I helped organize a meeting with then Minister Cathy Rogers to discuss a detailed model of an Autism Village Network Proposal drafted by Professor Emeritus (Psychology) Paul McDonnell who also attended the meeting with me and parent Cynthia Bartlett. The meeting, as I perceived it was very positive, but nothing came of it, not even a substantive meaningful response. 

In August 2018 members of the Autism Advocacy New Brunswick group  attended in Fredericton on a warm October afternoon and voted overwhelmingly in support of  the Autism Village Network - Satellite Model drafted by Paul McDonnnell Professor Emeritus (Psychology).    

In April 2019 autism parent advocate Cynthia Bartle & I met with then social development minister Dorothy Shephard  and presented the New Brunswick Autism Spectrum Village proposal which built  on those successes enjoyed by NB children and youth today. The proposal called for a network of enhanced autism group homes built around a Fredericton based centre that would provide training, oversight, continuing education,  and residential care and treatment for those most in need.  A copy of the proposal is included herewith. 

Studies and reports such as the Autistica UK Personal Tragedies, Public Crisis have documented the reality of severely  reduced life expectancy on the autism spectrum with those with autism and intellectual disability living, on average 30 years less than the general population and those with autism without ID living 9 fewer years on average. Epileptic seizures are the primary trigger for the early death of the 40-50% of persons on the autism spectrum who also suffer from  intellectual disability. 

Despite the severity of the health crisis facing nearly half of the autistic population who also suffer from epilepsy and seizures nothing has been done. In fact I was informed by several MLAs that any response to our concerns about adult autism health care would probably have to wait  the presentation of the "Hutch" Report an initiative of the Autism Connections Fredericton executive director Rick Hutchins who has no family experienence caring for adults with atuism nor any professional or academic education with autism disorders.  He appears to have  friends in government from his lobbying career and he appears to be a close friend also of Paul McDonnell Ph.D.  While Professor McDonnell wrote the 2015 Report and attended our meeting with then Minister Rogers he did not speak out as an advocate as he did in 2015 and earlier in 2010. The allegedly provincial focus report on adult autism needs does nothing to explain the serious challenges facing adults with severe autism, intellectual disability, and seizures including migraine  There is no attempt, in the Hutch Report to address the severely reduced life expectancy of those who suffer from ASD, Intellectual Disability and Epilepsy. The latter also includes sudden onset migraine attacks which can be mistaken for bad behaviour. Time that many parents do not possess in abundance has passed until the Hutch Report was pushed onward.  The only positive aspect of the Hutch Report was for the benefit of the Autism Connections Fredericton Centre with a recommendation for ... increased funding for ACF. 

Unlike Mr Hutchins I  have held my son in my arms as he has fallen into tonic clonic seizures and seen him fall to the floor at the cash at the Superstore on Main St in Fredericton New Brunswick where the staff, fortunately were very well trained in assisting me with my son's seizure at that time.  I have seen him suffer abruptly in severe migraine pain. I have included pictures I was taking of him on the swings happy as could be seen before and during rapid onset migraine pain.  My camera was on an athletic setting which captured the movements very quickly as it would for a sporting event. 

 

I ask you to review carefully the 2015 proposal for the NB Autism Spectrum Village - Satellite Model, drafted by NB autism expert Paul McDonnell with input from parent autism advocates who fought for the early autism intervention program, the autism trained aides and resource teachers in our schools and the reversal of the decision to close the Stan Cassidy Autism team.  The Autism Society New Brunswick drafted a similar model, albeit less expert and professional  than that of Professor Emeritus (Psychology) Paul McDonnell after conducting a survey of NB families in 2008. 

The Ombud has produced a report with which you are all familiar which speaks to the very unhealthy conditions at the Restigouche.  A centrally located centre for severe autism care and education of those who provide care in special care homes around NB to autistic adults is essential and without  such a network it is my opinion as a long time autism advocate, a father of an adult son with severe autism and a practicing lawyer that the harm that has endured will continue.  As I grow older I do not see a system in place to provide care for my adult son with autism, intellectual disability and epilepsy a common and very  serious life threatening combination on the autism spectrum.  

In my humble opinion, both personal and legal, I see neglect on a scale that violate the United Nations Convention on the Rights of Persons with Disabilities. My 24 year old adult son lives with limited communication skills, migraine pain and epileptic seizures.  I have to keep on fighting until I can't.  I understand you all have many other issues  especially now in the COVID era.  

The Hutch Report added nothing of value for those with severe autism, intellectual disability,  epilepsy and a 30 year reduced life expectancy.

 I hope that you  end the delay and start working on the proposal as written by Paul McDonnell in 2015.

Respectfully,,

Harold L Doherty, BA, LLB

Conor's Dad

Queen Elizabeth II Diamond Jubilee Medal Recipient - Autism Advocacy

The New Brunswick Autism Spectrum Village - The Satellite Model

It Takes a Village to Support Adults with Autism Spectrum Disorder

NEW BRUNSWICK SATELLITE MODEL FOR

ASD SERVICES FOR ADULTS

New Brunswick has made great gains in providing early intervention programmes for children with autism spectrum disorder (ASD), a neurological disorder, and is currently developing a comprehensive rogramme to train teachers and teacher assistants within the province to work in an effective manner with our students.  To date, no initiatives have addressed the needs of adults. Once a student reaches the age of 21 years, there are no services, no supports, and the entire burden of support and care falls upon parents and family.
It is therefore imperative that New Brunswick establishes an Autism Treatment and Residential Centre.  The centre should be situated in Fredericton so that it is physically close to regional autism expertise at the UNB-CEL autism program and the Stan Cassidy Centre.  The Centre would provide treatment for all autistic adults who are too old for treatment at the Stan Cassidy program and permanent residential care for the most severely autistic some of whom have been sent to the Spurwink Facility in the State of Maine and to the Restigouche Regional Psychiatric Hospital in
Campbellton.  Autism specific group homes around the province are required with autism trained staff and oversight from the Centre.  In this sense, the model proposed could be characterized as a “satellite” model in which the centre in Fredericton would be linked directly to a number of satellite homes around the province.  Medical issues commonly associated with autism disorders including epilepsy and depression would also be treated in the context of persons suffering from autism and the extra challenges it presents to treating those common co-morbid conditions.

The scope of the problem can be appreciated when one considers the fact that autism spectrum disorder is the single largest disability across Canada. Current estimates of the number of individuals diagnosed with autism spectrum disorder range from the recent estimate by the Center  for Disease Control in the USA of 1 per 68 persons1  to slightly more conservative estimates around 1/1602. This means that the incidence of autism spectrum disorders ranges from 4700 to 11,100 individuals in New Brunswick.  It also means that services are needed for roughly 3,300 to 7900 are
in the age range between 22 years and 75 years.

1CDC, Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — United States, 2010,
March 28, 2014 / 63;1-21
2Elsabbagh M, Divan G, Yun-Joo Koh YJ et al.. Global prevalence of autism and other pervasive
developmental
tism Res. 2012;5(3):160–79

One can also understand the scope of this problem by looking at the following list of challenges  that are faced by parents of an adult son or daughter with autism spectrum disorder. Because the range of disability within ASD is so broad, we present a wide range of very typical challenges that
families face.

• Cessation of Educational Opportunities – Once a student leaves the school environment in which they have supported learning opportunities, there are few if any places a student can go to advance  their learning. Most of these students could not avail themselves of post secondary learning opportunities, as they require a significant amount of scaffolding to enable them to succeed.  At age 21 most typical students have a variety of skills and are reasonably literate.  Even they need ongoing training and many even most do some form of additional education or job training.  This is  not possible for the majority of the young people with ASD.

• Unemployment – The rate of unemployment among all levels of persons on the spectrum is close to 100%.  Some do manage to find limited employment opportunities through the services of centres such as Fredericton’s Jobs Unlimited.  However, the majority of persons on the spectrum are not successful.  It is believed that people with Asperger’s (the most functional of persons on the spectrum) have a 75-85 percent unemployment rate.  Autism Speaks estimated that 85 percent of
adults with autism in the United States are currently unemployed or underemployed. Among young adults between 21 and 26 years old, only 50 percent have ever had a paid job outside of their households. This means that parents may have to support their son or daughter for most of their lives.   There are some government supports such as the disability tax credit and the disability retirement savings plan but we know that not all persons with a diagnosed condition will qualify for support and even if they did, the support is minimal in comparison to a living wage.  The 40% to 50% of persons with ASD who also have intellectual limitations are most likely to remain totally  unemployed although a few may find very limited opportunities through non profit community agencies.  The half of the ASD population with relatively higher intellectual skills will also have very limited employment usually because of social challenges.

• Regression of skills – All professionals who work with persons with ASD have seen the loss of skills that results from a lack of stimulation that comes from learning in functional social contexts.   In fact, several years ago, UCLA Psychologist, Ivar Lovaas, did a study in which individuals who had increased their IQ scores in a three-year treatment programme, lost almost all of the   3 functional skills (e.g., language skills, self-help skills, and cognitive skills) they had learned after three more years of no educational programming. We experience these kinds of regression frequently when an individual passes from a relatively stimulating learning environment to living at the family home without a planned curriculum.  Early intervention is the best way to provide long lasting learning but not all individuals will succeed sufficiently to be immune to regression of skills once formal training stops.

• Lack of respite Care – There are very few services available to provide respite to parents or guardians of individuals on the spectrum.  In addition, even fewer services exist (if any) that have staff that re appropriately trained.  This is a crucial service needed by almost all families affected. Parents with adults on the sp ctrum can be in very desperate need for respite care. In some cases, the individual with ASD will require care 24 hours a day and 7 days a week. Depending on a family ‘s circumstances, this may mean that either a father or a mother will need to be at
home with the child at all times. In other circumstances, the needs may be different. An individual  may not require as intense care but may present with many challenging behaviours and the parents
may need short-term breaks.

• Lack of opportunity for recreation – Recreation has been shown to be an effective treatment for  many of the challenging behaviors we encounter with individuals on the spectrum.  In addition,there is research to show that individuals with developmental disabilities tend to be less fit in general and tend to have more illnesses.  In large measure this situation arises from lack of suitable recreational and vocational services and far too much unstructured, idle, time.

• Restricted Social Lives – Individuals with a diagnosis are by definition less interested in social interactions and more likely to seek solitary pursuits. The major disability in autism spectrum disorder is a social disability.  Left on their own this pattern of behaviour intensifies and we know that increasing isolation from healthy social interactions can lead to major challenges.  With supports in employment and in other kinds of social interactions, persons with ASD can enjoy and benefit from social contacts.

• Mental Illness – The research is clear.  Individuals with ASD are more likely to be affected with co-morbid forms of mental illness such as depression.  The factors that contribute to the high percentage of mental illness are social isolation, lack of social supports in meaningful activities, lack of education, and lack of meaningful work and recreational activity.

• Behavioural Challenges – We need to point out that access to regular society (employment, residential living, recreation, etc) requires a minimum of compliance and an absence of aggressive behaviours.  Many individuals with more severe forms of ASD have some level of behavioural challenge.   These behaviours are almost always caused by poor communication skills and inadvertent reinforcement of problem behaviours by caretakers who do not have sufficient training to handle these kinds of behaviours.

Summary of the Problem:  It is clear from the description above that families with an adult child can be faced with overwhelming challenges and stress related to providing the very best services they can to their son or daughter.

Solutions:  The needs of individuals and families and the scope of the problem described above can be mitigated or overcome by our proposed centre. 

Our proposed centre would not be a single building as such but rather a satellite network of homes, apartment-styled buildings and other facilities integrated as much as possible within residential neighborhoods. The design is explained in more detail below.  Our approach will be innovative and uniquely designed to suit families in the New Brunswick situation.  The key principles for this proposed village are that all programmes and services are as much as possible evidenced-based, that the centre be dynamic in the sense of being flexible enough to meet diverse needs.  It also needs to have a meaningful connection to the NB community and that includes accessibility of services and easy accessibility for families to maintain a connection to the clients in the centre (or centres).

Comparative Analysis: There are some existing facilities that serve adolescents and adults across Canada, in the USA and in Europe.  For example, in the Toronto region there is a group called Kerry’s Place that offers evidenced based services for adults.  New Jersey has some outstanding private facilities and in particular the model developed at Princeton Child Development Centre is called Mountain View.  There are no services in New Brunswick that are remotely comparable to these  services.  Currently, when we have an adult with ASD that is unmanageable in a home or in existing special care homes, they are sent to a facility in Maine called Spurwink . The facility in Maine is a fine service but it costs the taxpayers thousands of dollars and is far away for the client’s family.

THE NEW BRUNSWICK “SATELLITE” MODEL: We have proposed a
"satellite" model that would provide residential and other adult services in several regions around NB but also would have a home base located in Fredericton.  In general, the best way to provide the physical spaces and to find appropriate staff is to make use of existing facilities but offer upgrading and training.  There are a number of options available such as providing training and other upgrades to selected group homes in the province. In addition, one can look at working with selected developers to create some residential complexes for both typical individuals and persons
with special needs of various kinds.

Possibly, an autism centre can be created at UNB or in association with the Stan Cassidy Centre.   The details of the physical spaces need to be planned carefully but the guiding principal is to provide dynamic services for all adults involved either as residents or as day users of the facilities.  As well, we want facilities that serve the diverse needs of the adult population.

SERVICES OFFERED BY THE NEW BRUNSWICK MODEL:

In a future draft of this proposal we will provide a detailed description of the kinds of services that we envisage.  These will include at a minimum residential services, sheltered work and vocational services, ongoing training in life skills and personal care, treatment of behavior problems, recreational skill development, respite care for families, training of families in skills needed to maintain their son or daughter in a home setting, and social skill development. There are clearly levels of support needed and the following is a list of some of the more obvious levels. Over the course of their lives, individuals may move from level to another.

One NB Government Agency Rubber Stamps Another and Voices of Adults with Severe Autism Challenges are Silenced Again

In NB the discrimination against adults with severe autism and related challenges including the 40-50% of persons on the autism spectrum with intellectual disabilities, many of whom suffer from migraine pain, seizures and an average life expectancy 30 years shorter than persons in the general population continues yet again.  Two PNB financed bodies, Autism Connections Fredericton and the Premiers Council on Disabilities,  have conducted a survey of adult autism issues in NB without addressing the realities facing those with severe autism and intellectual disability who constitute 40-50% of the autism spectrum population. Instead the their needs were expressly excluded by the authors of the Autism Connections Fredericton Adult Autism Tour report. Meanwhile existing discussions between parent advocates and government concerning the need for an Autism Residential Care and Treatment Village were held in abeyance for 2 years. 

Parents of children with autism and related conditions acting as the Autism Society of New Brunswick made a written submission on adult  autism residential care issues in 2008.  Among other points we requested consideration of an autism village network for residential care. It was ignored. 

The 30 year premature mortality rate faced by adults with autism and intellectual disability and other harsh realities facing many adults with autism and ID including epilepsy and the seizure related migraine pain shown in my son's pictures below are also ignored in the Autism Connections Fredericton Adult Autism Tour Report. In fact the harsh realities facing my son and others with severe autism and related disorders are intentionally excluded and "autism" is misrepresented by the Tour Report. The Premiers Council on Disabilities, like the Tour itself, is  financed by the PNB and the Council Chair has accepted the discriminatory and harmful report without providing any meaningful analysis of why the key points concerning autism were accepted.

The pictures that follow show the seizure related migraine pain that can occur very suddenly with my son, and others, who suffer from severe autism, intellectual disability and epilepsy very common matters for many with autism and intellectual disability which are not discussed in either the ACF Adult Autism Tour report or the Premiers Council on Disabilities Disability Action Plan July 2020:

The last 2 years have seen no significant developments in adult autism residential care and treatment as governments awaited the Adult Autism Tour Report conclusions which dragged on for 2 years and produced nothing but a mess of misinformation and which suppressed public knowledge of the harsh realities facing adults with severe autism and related conditions.  

The loss of those 2 years constitutes harm and discrimination against autistic adults with severe autism by the Autism Connections Fredericton and the Premier's Council on Disabilities as does the total exclusion from the "Tour Report" of any discussion of the serious challenges facing adults with severe autism and related disorders in NB." 

In 2015 before Dr. Paul McDonnell focused his autism efforts more and more  on the government financed and policy restricted Autism Connections Fredericton  he attended a meeting organized by me with then Social Development Minister Kathy Rogers with myself and fellow autism parent advocate Cynthia Bartlett in attendance. Dr. McDonnell presented his autism village network proposal to Minister Rogers with some input from myself and Ms. Bartlett.  I was optimistic after the meeting but we never heard anything further. 

In 2019 myself and 2 autism parent advocates, along with former cabinet Minister Tony Huntjens, met with Minister Dorothy Shephard. and again spoke about adult autism needs and the Autism Village Network proposal.  We have received no response in respect of our discussion in that meeting.  

In the meantime the ACFredericton Adult Autism Tour was organized by Rick Hutchins who has forged a career in seeking government projects but no experience as an autism parent and no formal education that I am aware of with respect to autism and related conditions.  Dr McDonnell joined him in that effort to my serious disappointment.  

The autism tour was a waste of time at best. Parents do not need Rick Hutchins to tell us that respite care is an issue facing many families with an autistic member. In fact that was an issue referenced in the 2008 ASNB Youth and Adult Residential Care and Treatment report submitted to the PNB on January 30 2008. We have also known for 12 years that serious consideration had to be given by PNB to establish a humane and evidence based adult residential care and treatment. We also brought that to the attention of government in the 2008 ASNB Report along with a request for an Autism Village Network to address those needs.

The government financed Premiers Council on Disabilities has rubber stamped the Adult Autism Tour Report which was financed by the PNB and conducted by the Autism Connections Fredericton which is also  itself largely financed by government. The ACF like all PNB financed community centres must comply with the policies dictated by the PNB including public statements they can make.

Parent advocates of adults with severe autism disabilities who had been involved in advocating for early autism programs, autism trained aides in the schools and reversal of the decision to close the Stan Cassidy Centre, did not have their issues addressed in the Report. Adults with severe autism,  adults who can not speak for themselves and who speak through their parents, were thereby dismissed or ignored in this process.

The ACFredericton Tour and its embrace by the Premiers Council Action Disability Plan July 2020 has caused harm and discriminated against adults with severe autism and related disorders by misrepresenting "autism",  burying the realities of those with severe autism and causing 2 more years of delay or excuses for  delay for 2 more years by the Province of New Brunswick.