Autism and Conor's ABA Based, Outside the Mainstream Classroom, Inclusion

These pictures were taken 7 years ago, September 28, 2010. Conor had been receiving evidence based ABA education OUTSIDE the Classroom. He did engage in activities involving other students such as apple picking. 

As the pictures indicate Conor was very happy as he is to this day. He did not become a robot because he received evidence based ABA instruction as some ill informed critics of ABA allege. Conor's autism and learning challenges were accommodated OUTSIDE Gordon Porter's "everyone in the mainstream classroom" inclusion philosophy. Individualised instruction outside the mainstream classroom plus activities with other students that Conor could enjoy. Worked for Conor!

NB Adult Autism Care - Autism Spectrum Village Proposal

UPDATE:  Dr. Gregory MacDuff 

 Adult Life With Autism Spectrum Disorder

UNB Fredericton Wu Centre

Dr. Greg MacDuff presentation on Adult Life With Autism took place yesterday and it was  excellent.  This parent learned a lot yesterday including many points I plan to use in caring for my adult son with severe autism disorder.  

I know from discussion that many other parents and professionals were also very happy with the days events and the excellent presentation by Dr. MacDuff.  I did note there were a handful of people who promote non evidence based approaches to educating and caring for autistic children and adults and I hope they learned enough to open their minds.  

The excellent presentation by Dr MacDuff continues today with 3 question sessions organized around government, professional service providers and parents.  

The Adult Life With Autism Spectrum Disorder is an excellent example of why UNB-CEL and Fredericton itself have so much to offer in the establishment of an adult autism centre to provide training and oversight of a network of autism group homes around the Province of New Brunswick.  

NB achieved international recognition when it established the early autism intervention program. It is time, it is past time to take that accomplishment to the adult autism level.

UNB Psychology Professor Emeritus Paul McDonnell, clinical psychologist, and mentor to many autism parents in NB is the intellect that triggered the creation of the internationally recognized early autism program in NB. 
    

In a 2010 CBC interview McDonnell drew the attention of the NB public to the need for autism specific adult services.  McDonnell proposed an autism network with group homes in communities around the province organized around an autism centre:

Paul McDonnell, September, 2010

"Our greatest need at present is to develop services for adolescents and adults. 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.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  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.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  

(Bold highlighting added - HLD)

McDonnell repeated the principles of his 2010 CBC interview and elaborated on them in The Proposal for An Autism Spectrum Village, May 14, 2015.  The proposal again reiterated the need for an enhance group home autism network with a centre in Fredericton near the autism expertise that has been developing here:

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.

 McDonnell, autism parent advocate Cynthia Bartlett and I all met July 14, 2015 in a meeting with then Social Development Minister Cathy Rogers.  Minister Rogers seemed genuinely interested in the Autism Spectrum proposal and was assisted by several advisers. 

 The optimism faded though when Minister Rogers was replaced by Minister Stephen Horsman who is also the MLA in my home riding of Fredericton North. I requested a meeting with my MLA but he seemed disinterested in any autism proposal and made it clear that he was OK with sending severely autistic adults to the Registigouce Regional Psychiatic in the City of Campbellton a city which is literally on the Northern NB border with Quebec.  In Minister Horsman's "reasoning" (and that of Restigouche MLA Don Arseneault) it was fine to send severely autistic adults to Campbellton far from the large bulk of NB families because some from the North have had to travel south for services.  This mentality was identified by former Liberal Health Minister Mike Murphy in the context of the youth mental health fiasco which was located in Campellton as being a political decision by MLA Donald Arseneault who weilded considerable influence in the Gallant Liberal government. Jobs in Campbellton trumps health and well being of autistic adults including my son Conor who like me is represented by Minister Horsman as our Fredericton North MLA.

Tomorrow will see a full day presentation on adult autism by a distinguished expert from Princeton Dr. Gregory MacDuff. 

Hopefully exposure to intelligent and principled expert information will encourage the Liberal government to establish a network of autism specific group homes with a centre in Fredericton, one which would be both centrally located, reducing to the maximum extent possible travel distance for families and be in close proximity to Fredericton's autism expertise.  

Hopefully. 

 I am not holding my breath but I have to continue to hold out hope for my son Conor and his future well being.

Some Adult Severe Autism Reality for NB Politicians

Autism mother and advocate Cynthia Bartlett - R

Ernie Steeves, PC Party MLA - L

Cynthia Bartlett, autism mother and advocate, and Ernies Steeves, a PC MLA who has shown a sincere interest in autism including adult autism residential care issues' are shown above at the NB Legislature the day of an autism protest.  

Yesterday Cynthia Bartlett, who knows what she is talking about, who has lived the challenges of providing care for an adult autistic loved one, posted a message on Facebook which was compelling and on point.  It is a message that government officials attempting to address autism issues in NB should read and not, as they often do, dismiss as irrelevant because it does not suit various political agendas:

Cynthia Bartlett

Saint Stephen, NB ·

Nothing has happened at all for the whole of my time in Canada since 2000 for long term, appropriate, therapeutic, professionally supported long term care for severely affected autistic adults who can also have comorbid conditions such as epilepsy. 

Care becomes very difficult for aging parents and there is evidence that the parents health due to the intense care is affected, full employment becomes very difficult and finances become stressful. These parents are devoted, but exhausted and very worried about the family's future, mostly their adult child's should the parents become too weak or in fact pass away themselves. 

So millions gets spent without a thought on restoration of historical buildings, "infrastructure " and additions to city hospitals at the expense of full services at rural hospitals (also needed for those with emergency needs such as epilepsy and self harm). But the vulnerable amongst us are compromised despite several attempts by advocating parents and MLAs. This is not constitutional, flat out, and not acceptable from any government.

My Severely Autistic Adult Son Conor and Corrupt Politics Are On My Mind

My autistic adult son Conor's future and Corrupt Politics are on my mind. Adults with severe autism are sent to Liberal MLA Don Arseneault's Campbellton NB/Que riding far from their families in much more heavily populated south and far from Fredericton based autism expertise. Campbellton is rapidly shrinking and mental health and autism patients are sent there out of sight, out of mind to try and re-build the Campbellton economy. 

As tweeted by former Liberal Health Minister Mike Murphy and subsequently reported by CBC reporter Matthew Bingley: 

"As a former minister of health I can tell you how hard it is to get specialists to go to our urban centres versus Toronto — let alone Campbellton," wrote Murphy in one of a series of tweets that suggested the Gallant government was putting "politics first, kids second" with the decision.

Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature.

Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau.

"Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition. But this government is intensely political."

Conor Suffers Another Seizure 6:05 a.m. September 2, 2017

Conor's latest tonic clonic (grand mal) seizure  took place at 6:05 a.m. this morning just after I placed his breakfast in front of him. .  I was expecting a grand mal seizure soon as it had been roughly 3 1/2 months since his last seizure in mid May and they have tended to happen 3 to 4 months apart.  This seizure happened while Conor was sitting on the couch, watching a movie and starting to eat his breakfast.  He started shaking violently and slid down off the couch.  I held him to keep his head from striking the floor and slid some soft blankets under his head.  He lay on his side and some of the food he had started to eat came out of his mouth.  Eventually the violent shaking subsided and he was able to speak and, with some help, move.  We went to the market for 2 of Dan's sausages and everything seems pretty noramal. 

Anyone with a  child with autism, especially if their child is developmentally delayed,  (persons with autism AND intellectual disability are much mo,re likely to suffer from epilepsy/seizures) would be wise to consult their medical advisers.  Epileptic seizures are very common among persons with autism and they can have serious, dangerous, even deadly consequences.  The UK Autistica report, Personal tragedies, public crisis, based on a large high quality Swedish study found that persons with autism tend to die between 16 to 30 years prematurely with the high numbers found among those with autism, intellectual disability and autism.  It is also worthwhile to note that the Autistic report indicates that in cases of people with autism seizures do not appear until their teenage years unlike in the general population when it is likely to show up in the child's first years.  In Conor's case his seizures appeared in his teenage years.

Each grand mal seizure is a reminder of my son's scary future prospects. With autism, intellectual disability and epilepsy he is at serious risk of decades early premature mortality.  For now though he is with us and I am relieved and happy that it happened again while I was just feet away.

Premature Mortality In Autism and Intellectual Disability - Epilepsy

Personal tragedies, public crisis

"Between 20% and 40% of autistic people also have epilepsy and this rate increases steadily with age – in contrast to a one percent prevalence rate in the general  population.1 0 In the typical population, the risk of epilepsy is greatest in a child’s first year, decreasing in risk through childhood, then remaining stable and not increasing again until old age. 11,12,13 In the majority of autistic people who develop epilepsy, their seizures do not appear until their teenage years, much later than average.5,14 This suggests that the underlying triggers of epilepsy may be different in autism. Autistic adults who also have a learning disability have been found to be almost 40 times more likely to die from a neurological disorder relative to the general population –with the leading cause being epilepsy.3"

------

Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time.

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.

Adult Autism Care: It Is Time for NBers to Stop Hiding from Reality and Develop An Appropriate Autism Centre and Network - Part I

"Our greatest need at present is to develop services for adolescents and adults. 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.

"We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected. 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.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff." 

-NB Autism Expert Paul McDonnell, September, 2010 CBC Interview, (highlighting added for emphasis - HLD)

There is often a split between  higher functioning persons with autism and persons who require life long care, persons who can not advocate on their own behalf.   and persons who require life long care, persons who can not advocate on their own behalf.  I am the parent of a 21 year old with autism, "profound developmental delay"/intellectual disability. As a young child he was interviewed by someone from one of the community based organizations in NB but they decided they would not work with him ... as was their legal right. The reality though is that some with more severe characteristics require intense, expert care not available generally.  My son is one of those. ... As I age and eventually die he will require a very intense and expert level of care not easily found in the community. 

NB Needs an autism care and treatment network that would accommodate persons with autism in need of different levels of care with homes around the province near families and a centre in Fredericton, near our developing autism expertise, for those with the most severe care requirements. Well meaning people in NB have resisted exactly this type of network while looking the other way when adults with autism are sent out of the province to Spurwink Maine or to our Northern Bordhe split generally on adult care issues exists between higher functioning persons with autism and severely autistic adults who are in Campbellton at the Restigouche Psychiatric Hospital as far as possible from by far the greatest number of NB families.   The Community groups and persons who oppose an autism centre and network modeled on integrated, educational, professionally trained principles have no problem sending our most severely autistic individuals  to the hospital type institution they do despise in Campbellton NB as far away as possible from the vast majority of families who have provided them with care and who love them.

It is time for NBers to stop cowering in fear and yelling "no institutions, no institutions" whenever we discuss the long term care needs of all adult persons with autism.  It is time to take an honest look at the real needs of NBers with adults and build a network and centre integrated into communities, with a focus on education, positive living experiences and individualized curricula with properly trained professionals and staff as close to families as possible around the province of NB.