Canada Loses an Autism Champion: Andy Scott Passed This Morning

Andy Scott With A Megaphone Supporting Autism Cause with Andrew Kavchak

Canada has lost an autism champion with the passing this morning of former Fredericton MP Andy Scott.  In a telephone conversation with a friend and fellow autism advocate elsewhere in Canada I once suggested the person contact their federal Member of Parliament.  I was informed that had already been done but there would be a wait before the MP could be seen.  There was some apparent disbelief when I mentioned that I could literally walk across the street to the office of our then MP Andy Scott and if he was in he  would probably see me or any other visitor.  

Andy met with representatives of the Autism Society NB on several occasions and actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  The motion was essentially a commitment in principle with no obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  He continued to advocate for autism as demonstrated in his June 5, 2007 statement in House of Commons:

Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians.

On a previous blog commentary about Andy I had referenced the National Autism Strategy and quoted from Tali Folkins 2003 Telegraph Journal article:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "

Andy Scott fought on behalf of autistic persons in Canada.  He did not achieve all the goals he wanted by any means but he did what was possible in the time he had. Autistic Canadians have lost a champion today.  

Will New Brunswick Ever Act To Provide Adult Autism Residential Care?

The Campbellton Based Restigouche Psychiatric Hospital

 is the Only NB Based Residential Care Option for Severely 

Autistic Adults in New Brunswick

June 22, 2013

David Alward, Premier's Council on Status of Disabled Persons 
Hugh J Flemming, Minister of Health 
Madeline Dube, Minister of Social Development 
Dorothy Shephard, Minister of Healthy and Inclusive Communities 

Dear Premier Alward and Honourable Ministers:

Re: Residential Care and Treatment for NB`s Autistic Youth and Adults

I am the father of a 17 year old son with severe autism, developmental delays and epileptic seizures.  If his mother and I were to perish in an accident tomorrow my last thoughts would probably be filled with the knowledge that New Brunswick lacks anything resembling adequate residential care and treatment facilities for youths with severe autism and related disorders.  In that regard nothing has changed since the attached 2005 Toronto Star article, in which I am quoted,  concerning the youth who was housed on the grounds of the Miramichi youth correctional facility solely because he was severely autistic.  Shortly thereafter, in part at least because of Toronto media attention, he was moved to the Spurwink facility in Maine. 

As our son ages into adulthood we, his parents, will likely grow feebler and ultimately will die. No adult care facilities for severely autistic adults who require permanent residential care and treatment exist in New Brunswick.  I have worked on this issue over the past decade and met on several occasions during the Lord and Graham government eras with Ministers and even with former Premier Graham.  Even before the Miramichi youth situation arose I advocated with other parents to move an autistic adult out of the Saint John Centracare facility.  I have visited Centracare on more than one occasion and I have also been given a tour by the operators of the Campbellton psychiatric hospital where some autistic adults live out there lives.

With that lengthy advocacy involvement on adult autism care, and lack of government response,  I did not honestly expect this administration, which repeats community and inclusion cliches in many government and official statements, and even pays for a new "community" government department, to actually take action on the issue of adult autism care and treatment.  I say this in the interests of candor not confrontation.  

Despite my skepticism about your philosophically driven approach to government I still have to hope, in the best interests of my severely autistic son and others, that you will, as the Lord and Graham governments did on early autism intervention, autism trained education assistants and reversal of the decision to close the Stan Cassidy tertiary care autism team, look realistically at the issues of adult autism care.  I ask you to take an evidence based approach to adult autism care issues. I ask you to take action.  I ask you to do something about the problem.

In that regard I refer you, once again, to an interview with  New Brunswick autism expert Dr. Paul McDonnell, UNB professor emeritus (psychology) and clinical psychologist, in 2010 in which Dr. McDonnell commented on the need for an enhanced adult residential care network:

Autism services needed for N.B. adults

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

The professor, who has spent 20 years studying children who have autistic spectrum disorders, said New Brunswick could look to the programs being implemented in the United States where local governments have funded facilities that provide independent living options for people with disabilities. 

These facilities can be expensive, but McDonnell said the costs can be even higher in terms of the "human costs" if these reforms are not implemented. "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," he said. 

Enhanced network 

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."

The 2005 Toronto Star Article follows. It demonstrates clearly how long these autism youth and adult problems have been festering in New Brunswick. Please take steps now to address these issues that torment so many with autism and their families in New Brunswick.

Respectfully,


Harold L Doherty
Fredericton, New Brunswick

cc. Brian Gallant, Leader of the Official Opposition Liberal Party of NB
     Dominic Cardy, Leader, New Democratic Party of New Brunswick
     David Coon, Leader, Green Party of New Brunswick
     Facing Autism in New Brunswick
     Media

-----------------------------------------------------------------------------------------

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospital. 

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.``

Conor Recovery ... For Dad ... Means Walking On The Trail Again

We have been very happy with the excellent care Conor received after his adverse drug reaction. Everyone involved, from our family doctor who saw us very quickly after our concerns arose, immediately advised cutting back on Conor's meds and was at the ICU and pediatric wards as part of his treatment team to the doctors, nurses, technicians, physiotherapists and all staff at the emergency, ICU and pediatric ward teams. All were terrific in ensuring Conor's recovery. Everybody was top notch and we are grateful for their service to our son. 

Each day of progress brought fresh signs and while some work remains overall his progress has been great. This afternoon he and I walked the trail to the Superstore for an OJ treat and return home. The Run Jump Fly boy has not returned ... yet ... but Conor kept a brisk walking pace and Dad was very hard pressed to keep up ... another great sign of Conor's recovery progress.

In the top picture below the white building with yellow trim in the center of the photo is the hospital, the DECH, where Conor was treated a few weeks ago. 

 A long time ago in a universe far, far away.

Extremely Grateful

The Intensive Care Unit of the Dr. Everett Chalmers Hospital in Fredericton made a difference for our family.  They saved our son Conor's life after he suffered an adverse reaction to new anti seizure medication.  They gave our son back to us. For that we are, as the CBC caption underneath the audio of my interview in support of the ICU campaign to raise funds for new monitoring equipment put it ... extremely grateful. 

As we understood it Conor's muscles were breaking down and releasing proteins that were very dangerous to his kidneys. The ICU team were monitoring him constantly while flushing the meds out of his system, taking blood samples and other tests and examinations and starting him on the road to recovery.  

Conor spent 6 days in the ICU with his mother beside him where she slept on a cot for the  entire stay.   During those six days the ICU doctors and nurses were reading his vital information in the room he was in and at the large desk area outside the patients' room.  This monitoring equipment is 10 years old and needs replacement.  If you can help the ICU team save lives   please do so by contributing at the Chalmers Foundation. 

Audiotape of my interview by CBC's Terry Seguin yesterday in support of the campaign to raise funds for new monitoring equipment for the Chalmers' ICU:

Conor at the Chalmers Hospital's Intensive Care Unit 

In the left of the photo above you can see some of the 10 year old 
monitoring equipment that the ICU team used to save Conor's life.

Conor home and happy after his first day back at the swimming pool as part
of his school recreation activities. We asked his school assistant to take him only in to the shallow end but Conor had none of that and went to the deep end, swimming, jumping off the diving board and going up and down the large slide.

CBC Inclusion Interviews: What Did Smith and Carr Mean By Inclusion?

CBC's Terry Seguin conducted two very good interviews with outgoing NBTA President Heather Smith and EECD Minister Jody Carr over the last two days.  However, neither of Terry's guests gave a clear definition of what they meant by "inclusion".  The only clear definition of inclusion offered by the current administration is one provided by the Alward administration's inclusion mentor Gordon Porter. It is a definition of inclusion which Minister Carr has not disavowed and one which is at odds with the New Brunswick government's policy statement which defines inclusion as evidence based and based on a student's best interests. 

The source of much of the uproar over inclusion in NB is Mr. Porter's obsessive insistence that ALL students be educated in the regular classroom as he stated last year in a session on inclusive education in Newfoundland:

"CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter.""

- Diane Crocker, The Western Star, April 13, 2012: Inclusion in the classroom 'simple', says educator.

For some children with challenges, including some like my son with severe autism, inclusion in the classroom was not simple or natural.  He was overwhelmed by the classroom environment and came home each day with self inflicted bite marks on his hands and wrists.  He  was removed from the classroom at our request and  received his instruction from UNB-CEL Autism trained education aides at alternate locations in grade school, middle school and high school.  The biting disappeared and he was able to receive the education promised to all children in New Brunswick. He was accommodated.

Now my son's alternate learning locations are targeted as "segregated" learning by the omniscient Mr. Porter. The accommodation of my son's  disability that has allowed him to receive his education in local schools is at serous risk of disappearing when the Porter Aucoin Report becomes fully implemented in 2013.  It seemed to me in listening to EECD Minister Carr and NBTA President Smith that they were not challenging Mr. Porter's "everyone in the classroom" dictate.  They appeared to disagree only over how many aides would be in the regular classroom to assist the teacher.  My son's accommodated education is at serious risk in the Porter era.

NBTA Acknowledges Education Department's Obsession With Inclusion Philosophy

The New Brunswick Teachers Association has spoken up ... sort of ... about New Brunswick's extreme inclusion philosophy.  The NBTA to its credit  acknowledges, finally, that inclusion is a philosophy not an educational plan as stated by outgoing NBTA President Heather Smith at a meeting of delegates from around the province.  Smith also acknowledged that the education focus during the past year has been  on the Porter Aucoin Report with all "professional development" focused on inclusive education.  Smith, in a recent Daily Gleaner article by Tara Chislett,  also talks about the need for more resources without identifying any of those resources.  Many autism students who require autism trained education aides do not have them.

Outgoing NBTA President Smith also fails to acknowledge that some students with severe autism and other severe difficulties require accommodation of their disabilities by learning outside the regular classroom. Unfortunately the inclusion extremists have targeted such human rights accommodations as constituting segregation and  are trying to eliminate them. What Smith did not say is that in New Brunswick inclusion is a ridiculously simplistic "everybody benefits from education in the regular classroom" belief.

Although Ms. Smith did not go far enough in her critique of the education philosophy that has ruled the minds of New Brunswick educators and civil servants it is a solid beginning.  At last one voice, other than the Autism Society New Brunswick in its submissions to the MacKay and Ministerial inclusive education reviews, and me personally, has spoken out against the decades old mindset that has provide obstacles to the accommodation of students with severe disability challenges.

"The president of the New Brunswick Teachers’ Association says the Department of Education has focused too much on inclusive education over the last year instead of giving teachers what they need most: an education plan laying out achievement goals.

“One year ago, I stood at this AGM and made the statement that New Brunswick was still without a publicly unveiled education plan,” she told the crowd. “It’s frustrating that I am here making the same statement today. It is quite clear that the education focus this year has been on the Porter Aucoin Report and that all department-led professional development has focused on inclusive education.

“I have a degree in special education and it is my belief that inclusion is an approach, a philosophy, not an educational achievement goal.”

Smith said in addition to a lack of an education plan, schools continue to struggle with not having enough resources as the government continues to cut away at budgets.    ...  “Inclusion’s not an outcome. I’m sorry. It’s a philosophy. And we’ve had that philosophy in our schools since the mid-80s. It’s a great philosophy, we support it if the supports and resources are there so schools can do it effectively.  “But that’s not a plan for education. It’s not."  (Bold added - HLD)

Excerpts from Teachers Say Education Plan Overdue, Daily Gleaner, May 26, 2013 

CBC News Misrepresents Autism By Omitting Any Reference to Intellectual Disability

In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

There is no single symptom that would lead to a diagnosis of autism. But someone who shows a number of the following characteristics and behaviours would likely be diagnosed with an ASD:

• Shows no interest in other people
• May be interested in people, but does not know how to talk, interact with or relate to them
• Has difficulty initiating and maintaining a conversation.
• Is slow developing speech and language skills, which may begin to develop and then be lost, or may never develop fully.
• Has difficulty interpreting non-verbal communication such as social distance cues, or the use of gestures and facial cues, like smiles, that most of us take for granted.
• Repeats ritualistic actions such as spinning, rocking, staring, finger flapping, and hitting oneself.
• Has restricted interests and seemingly odd habits, like focusing obsessively on only one thing, idea or activity.

As well, people with ASD may have secondary problems such as:

• Neurological disorders including epilepsy.
• Gastro-intestinal problems.
• Fine and gross motor deficits.
• Anxiety and depression.

Children with ASD develop motor, language, cognitive and social skills at different rates from other children their age. For instance, they may be very good at solving math problems but have great difficulty making friends or talking."

The only reference to intellectual or cognitive disabilities in the CBC News article is in the last paragraph above which implies that cognitive skills may develop at different rates in conjunction with other skills and immediately mentions possible strengths such as solving math problems.  This is not by any means a clear and accurate representation of the intellectual disability that is present in large numbers of persons with autism. 

The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:

• Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006.

The CDC estimates are consistent with other estimates of the "co-morbidity" of autism and intellectual disability that I have posted links to on this site.

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

Conor Goes For A Swim (and a Dive and a Slide) and Shows Terrific Progress In His Rhabdomyolysis Recovery

Conor home after a great swim adventure;

making terrific progress on his recovery

Conor's autism and profound developmental delay were supplemented by two grand mal seizures between November 2012 and April 2013.  The second seizure occurred two days after he began treatment with the anti seizure medication Lamotrogine.  During the second week of treatment when his dosage was increased from 1 to 2 25 mg tablets a day he began to sleep and medical advice was sought.  The specialists were not available quickly but our family doctor saw us early the next day and advised us to cut back on the dosage which we did.  Later that day though Conor still developed a rash and temperature and went to the emergency ward of the local hospital, the DECH.  He spent 6 days in the Intensive Care Unit and two weeks altogether in the hospital.  Conor's adverse reaction to his medication was diagnosed as Rhabdomyolysis a condition in which the muscles break down and release substances which pose great risk to the kidneys.  But Conor received excellent medical attention and was released to come home where he has continued to make made great progress.

We would like to take some credit for Conor's great recovery but the truth is he has led with his own initiative. Conor was jumping up off the couch even before he had his balance and we had to keep a close watch on him. This week Conor returned to school for part days.  His mobility and balance improved dramatically each day and this morning he went swimming at school for the first time since his hospital stay.  The plan was for Conor to go to the pool and sit in the hot tub.  Conor had none of that.  His aide informs us that instead  Conor walked down the accessibility ramp into the shallow end of the pool. He subsequently went to the  diving board where he jumped into the deep end and swam like a fish.  Conor also made for the giant slide where he climbed to the top and slid down.   

I couldn't have asked for a better present then to learn about Conor's swim adventure today.  6 days in the ICU with 5-6 tubes at a time sticking out of my buddy Conor seem  like a bad dream today.  Our Run Jump Fly Boy was flying today and we are happy, very happy.

DSM5 Autism Spectrum Disorder Has Arrived: Are Ari Ne'eman and John Elder Robison Still Autistic?

The DSM5 has been released and is now beginning to impact the world of autism.  Most discussion of the DSM5's New Autism Spectrum Disorder has ignored the effect of the language of mandatory criterion A which will act to exclude from autism diagnosis those with severe intellectual disability. Most of the discussion has focused on the potential exclusionary impact on those who would meet DSM-IV Asperger's criteria.  That being said the DSM5 autism team leaders have assured the high functioning end of the DSM-IV autism spectrum that those currently diagnosed with Asperger's or high functioning autism will not lose their diagnosis.  They will in effect be "grandfathered" in to the new autism spectrum. The answer to this commentary's title question is  therefore NO, Ne'eman and Robison, two very high functioning "Aspergians" will not lose their autism diagnoses.  

Although they will be grandfathered into the new DSM5 autism era will Ari Ne'eman and John Elder Robison and other  very, very high functioning "Aspergians" and "Autistics" remain as credible (in the eyes of mainstream media and Autism Speaks) spokespersons for persons at all points on the DSM5 autism spectrum?  Will persons who routinely appear in high profile media interviews before the Washington press gallery, New York magazines, CNN, CBC, BBC, run successful businesses, establish corporate entities, sit on the boards of directors, participate in IACC meetings  and in some cases raise families be able to speak on behalf of those who meet mandatory  Criterion D of the DSM5 New Autism Spectrum Disorder which states that the social communication and restrictive repetitive symptoms together limit and impair daily functioning?  Can the corporate directors of the ASAN corporate entity, including those with professional and academic backgrounds and some with families, claim to be limited and impaired in their daily functioning in any meaningful way? 

The real answer is that it doesn't matter if they would meet DSM5 autism criterion D.   Convenience is the reason that researchers have so often excluded those with severe autism and cognitive challenges from their studies.  Researchers, like the media, need very high functioning participants and interview subjects to do their autism focused work and earn their pay cheques. Robison and Ne'eman's careers as autism spokespersons/"self" advocates are safe.  Persons at the more severe end of the autism spectrum will remain invisible, hidden from sight, and excluded from research,  while high functioning "self" advocates speak on their behalf.

Conor's Physiotherapy With CBC's Terry Seguin

Conor is still recovering from Rhabdomyolysis, an adverse reaction to anti-seizure medication, Lamotrogine and needs phsyiotherapy to rebuild his damaged muscles, balance and co-ordination.  Just being home is a huge help for Conor, back home with Mom, Dad, his brother and his familiar routines.  One of those routines has been to get out of bed every morning at 6 am.  If he is awake at 5:30 he stays in bed until 6. That is his routine and Conor has a classic autism need for routine.  When he gets up each morning his routine has also included turning on the television and watching  "CBC Terry Seguin".   

Conor has been sleeping on a living room couch since his return so I could be nearby on our other couch to keep an eye on him in case he was in distress. This morning I was in the adjacent kitchen when I heard some loud walking noises in the living room and went in to find that Conor had walked from the living room to the television to turn on CBC Terry Seguin.  Conor has been very wobbly on his feet and he has a long way to go towards recovery so I was startled to see him at our big screen TV.  I was happy though that he had done so without falling and hurting himself. It was a sure sign of progress in his recovery.  His CBC Terry Seguin television walk demonstrated improvement physically and showed that Conor will not stay down, he will keep walking until he is fully recovered.  Two thumbs up for Conor ... and for Terry Seguin!

Unthinking Autism Guide Shannon Rosa Attacks Autism Parents .... AGAIN.

Shannon  Rosa, with the Twitter help of Seth Mnookin and Dr. Jon Brock is at it again, misrepresenting autism disorders and the state of knowledge about autism causation and of course blaming autism parents fighting for their children for the latest report of a professional caregiver abusing an autistic child because they dare talk honestly about the negative aspects of autism DISORDERS :

"At their worst, negative media-sown autism messages influence people like Greg Simard, who brutally beat a 12-year-old, non-speaking autistic boy in his care. Simard justified his actions by saying of the boy, .... Some autism parents never find their way out of that initial horror and negativity, .... These parents see other autistics writing, speaking, participating in online communities, and their furor increases -- how dare those autistics say good things about autism, when their kids need 24 hour supervision?"

Ms. Rosa's wild, hostile opinions are not substantiated by evidence or professional consensus of any kind but that doesn't stop Mnookin and Brock  from spreading her hateful messages.  In the instant case there is no basis whatsoever to the claim that the media focuses on negative stereotpyes or that it does so because of  bad autism parents.  Temple Grandin is celebrated around the world.  John Elder Robison and son Cubby regularly receive promotion on CNN.  Television series inevitably portray autism in the form of the socially awkward but otherwise brilliant, high functioning techie, geek syndrome as autism. 

Rosa's claim that the abusive caregiver is influenced by the alleged overwhelming dominance of negative media stories is absurd and, once again, based on no evidence whatsoever. An abuser makes a cheap comment in the media and Rosa accepts it as reality because, in her mind, it confirms her negative views of other autism parents who do not share her views. This is no accident.  A mother in Colorado killed her autistic child and stated that she did so because she feared the child was autistic.  Rosa leaped to the attack against autism parents speaking honestly about their children's autism disorders blaming them for the mother's actions. What Rosa bypassed in her attack  was the fact that the prosecution had concluded that the woman was insane and for that reason did not prosecute her. 

I am not going to repeat all of Rosa's misinformation about autism on this site.  Her statements of fact are in fact simply her opinions, opinions that reflect her hostility towards autism parents who fight to improve their childrens' life prospects by speaking honestly in the effort to find autism causes, cures, treatments and services  for their children.  These parents, and I consider myself one of them, do not conform to Rosa's angry .... and flat out silly ... mischaracterizations.

While Rosa is out with her non evidence based rants about autism disorders and parents fighting for their autistic kids here is a bit of autism reality from the New England Journal of Medicine, the kind of stuff Rosa doesn't want the world to know about:

"Genomics, Intellectual Disability, and Autism

"Autism spectrum disorders have been estimated to affect as many as 1 in 100 to 1 in 150 children.4,5 Disorders on the autism spectrum share features of impaired social relationships, impaired language and communication, and repetitive behaviors or a narrow range of interests. Many children with autism spectrum disorders also have intellectual disability, and approximately 75% have lifelong disability requiring substantial social and educational support. Thus, autism and intellectual disability together represent an important health burden in the population and are frequent reasons for referral to genetics and developmental pediatrics clinics for a diagnostic workup."

Prediction: the next similar tragedy that befalls an autistic child will also be blamed by Rosa on other autism parents with whom she disagrees.  Her views will unfortunately be promoted by the Mnookins,  Brocks and other professional and academic Neurodiversity subscribers.  Thinking Persons Guide to Autism? Not even close.

Conor Is Home From the Hospital!

Above Conor, and Mom, in the bottom pic,  on the way home.

Conor's Mom stayed at the hospital with him 24/7,  for 2 weeks

Dad spelled her off at times and the nursing students also sat

with Conor and gave Mom some breaks once he was moved

from the Intensive Care Unit to a room in Pediatrics.

In the grainy pic below (taken in dark lighting) Conor rests

at home on one of our living room cozy couches.

Conor is home! After 2 weeks in the hospital, including 6 days in intensive care, it feels great to have our buddy home with us. Yesterday I told Conor I would be back at 8 am this morning to take him home.  I arrived at 7:55 am and Conor Was waiting in the door way of his room ready to go home.

We really didn't know for the first few days if he would survive.  His negative reaction to the anti-seizure medication Lamotrogine resulted in a condition called Rhabdomyolysis which is as bad as it sounds.  Essentially, as I understand it the muscles break down and can cause renal (kidney) failure.

Conor is home now, safe and healthy. We all have lots of work ahead doing phsyio  with Conor as he recovers strength and coordination. Conor has shown substantial improvement each of the last several days and we are very optimistic that our Run, Jump, Fly boy will be back before too long. 

There are many, many people to thank for Conor's well being today. There are literally so many: all the hospital medical, nursing and support staff, our family doctor, people who know and work with Conor at school who visited with him in the hospital,  family friends and Conor's brother Brandon who was a big help at home and at the hospital on visits. 

We are happy, very, very happy to have our buddy home with us. Today is a great day in the Doherty home.

Dr. Tom Insel's Shameful DSM Retreat

Left - Transforming Diagnosis Insel


Right - NIMH Is Not Abandoning the DSM Insel.

In Transforming Diagnosis NIMH Director Thomas Insel said that the DSM was invalid, based on an antiquated system of diagnosis and .... patients deserve better.   Then he retreated, tried to hide and claimed that people were misrepresenting the Transforming Diagnosis article, that the NIMH was just talking about research not clinical practice. Last I checked Diagnosis is a key part of a medical clinical practice. If you are talking about participants or subjects you are talking about research.  If you are talking about patients who deserve better you are talking about clinical practice.  If you say that the DSM is invalid and antiquated you are not supporting the DSM, you are blowing it up.

You can run Dr. Tom but you can't hide.  Your words, your Transforming Diagnosis article are out there in the public domain.  Patients deserve a medical diagnosis based on research.  You said it and I believe it.  I don't believe the excuses offered in your shameful retreat.

Adult Autism Care in New Brunswick: An Open Letter to Premier David Alward

 

May 6, 2013

Honourable Premier David Alward

Respected Cabinet Ministers and Party Leaders

Dear Premier Alward

I am the Acting President of the Autism Society New Brunswick  and a parent that was involved, with many  other parents, in the advocacy that led to the establishment of the UNB-CEL autism intervention training program, the provision of early autism intervention to children aged 2-5, UNB-CEL  autism specific training of Education Aides and Resource Teachers and the reversal of the decision to close the Stan Cassidy Center tertiary care autism team. We also argued with some modest success for an evidence based, student centered, definition of inclusive education. We have been less successful in advocating for  a continuum of placement options to accommodate the varied, complex needs of autistic students although individualized instruction does continue in some schools. 

 

Autism successes in New Brunswick have resulted from many factors including access to sound, knowledgeable, professional advice that oriented us toward evidence based, scientific goals to assist our children's very challenging needs and responsive  leadership in the Lord and Graham governments.  Despite these gains, which are in need of further refinement and advancement,  we must, with sorrow, shame, and fear, acknowledge that  we have to date failed to see any substantial improvements in services  for New Brunswick adults with autism disorders. That failure, like the aforementioned successes, must be shared by parent advocates and government decision makers.

 

Several news agencies have highlighted events in Ontario where parents left their 19 year old severely autistic son with a government office because they were unable to continue providing him with the necessary level of care.  Many New Brunswick parents including me, and my wife, have also long feared that day. That fear grows stronger with each year of non action, each year of failure to address seriously the needs of autistic adults across the autism spectrum. 

 

Many parents in New Brunswick seek meaningful assistance to help care for their adult autistic children in their homes.  Obviously at some point parents grow too old or exhausted and ultimately become enfeebled and pass on. We do so  with the knowledge that no credible, comprehensive autism care system is in place to care for our adult autistic children who require assistance when we can no longer help them.  Moderately to severely autistic and intellectually challenged autistic adult children will face serious difficulty living in group homes with untrained staff and non existent educational and social options.  Our most severely affected autistic adults will live in the Restigouche Regional Hospital psychiatric unit or in facilities out of  province like the Spurwink facility in Maine. 

 

Money is always an issue in government decision making and that is understood by all.  However, the failed group home system that exists in NB   also carries costs such as placements in Spurwink Maine at several hundred thousand dollars a year per individual.  Money is part of the problem but so too is the overwhelming dominance of the "community"philosophy in the mindsets of NB's public decision makers.  There is no question that those who have promoted the community/inclusion model in NB have made very substantial contributions to the lives of most persons with disabilities in our province but  the dominance of their beliefs, and the rigidity with which they are maintained, precludes the development of evidence based alternatives and prohibits the development of a facility that can provide permanent residential care and treatment for those with severe autism and co-morbid disorder challenges.  

 

Autistic residents of group homes have been charged with assault when in conflict with untrained staff.  An autistic youth was housed temporarily on the grounds of the Miramichi correctional facility and at least two New Brunswick residents with autism have been sent to Spurwink in neighboring Maine.  We do not have a modern, professional,  permanent residential care and treatment facility for adult New Brunswickers with severe autism in large part because of the rigid adherence to a decades old philosophy that simply ignores contrary evidence including those persons who are sent to psychiatric and general hospital wards, out of province facilities and correctional facilities to spend their lives.  Public events to discuss disability policies and service requirements are typically organized in pre-arranged "table discussion" formats that prevent serious open discussion of contentious issues.

 

Over the last decade the Autism Society New Brunswick advocated for a continuum of residential care and treatment options to provide for our autistic adult children.  Three years ago, during the 2010 provincial election,  UNB Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell articulated in a CBC interview the concept of a continuum or network of residential care and treatment center.  Professor McDonnell spoke of the need for a modern adult autism residential care and treatment system in New Brunswick with a center that would provide residential care and treatment for those severely affected by autism, a center that could also assist in the training and service provision in group homes and facilities in communities around the province.  The center would be a modern facility that could provide educational and social elements in the lives of severely autistic adults. No progress has been made in moving towards such a home grown solution notwithstanding the international recognition that NB received for its successful UNB-CEL early intervention autism training program.

 

On behalf of the Autism Society New Brunswick, and parents of autistic children and adults, I ask you Mr. Premier to commit to the modern, professional system of adult autism residential care  articulated by Professor McDonnell.  An adult autism residential care and treatment facility based in Fredericton, with professional administration, trained staff, evidence based treatment,  education and social programs for the residents is needed.  An autism center would  provide desperately needed  permanent residency for the most severely affected by autism disorders, training and advice for staff in community based group homes, and assistance for parents whose adult children are still living with them.  The Fredericton location would be centrally located and in close proximity to other New Brunswick autism successes and expertise at UNB and the Stan Cassidy Center.  

 

Much time has passed with no serious response to our calls to address the needs of autistic adults. There has been no progress to date. Hopefully that will now change and work can begin as soon as possible on the development of an autism residential care and treatment facility.

  

Respectfully,

Harold L Doherty

Fredericton

cc. ASNB

      media

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

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 Dad 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: