"Robbie's Home!" Missing Teenager With Low Functioning Autism Found Safe in Toronto



Robert Capovilla, right, is reunited with his family Sunday night, a day after the autistic teenager went missing, prompting a huge police search. Aunt Margaret Saracino and father Adriano Capovilla reach for Robert on his return home.
RICK MADONIK/TORONTO STAR

The Toronto Star reports an autism story of danger and family fear that ends on a happy note with the safe return of  Robert Capovilla:


"The shy 16-year-old, diagnosed with autism and whose mental capacity is more like that of a child of 8 or 9, had been missing for more than 24 hours. In the biting cold.


Robert wandered away from his Mississauga home around 2 p.m. Saturday — a highly uncharacteristic move, says his mother, Maria. He had last been spotted at a McDonald's on Dundas St. W."


The Star reports that a large scale effort including public notices and searches by friends, family and police had been under way. The Toronto teen had left his Mississauga home and had made it all the way to downtown Toronto before being spotted by a Toronto Transit employee.  

Many parents with low functioning or severely autistic children have experienced the fear of their child going missing, including me.  As we  know from the sad story of James Delorey who was lost in a Nova Scotia snow storm and didn't recover from the effects it does not always end well.  In Toronto today Robbie is home, he is safe and healthy.  His family, as seen in the Toronto Star photo above, is very happy.  Many parents, particularly many parents of autistic children who have lived through a similar experience, will share their joy.

Posted in , , , |

Autism Brain Scan Tests or Just High Functioning Autism Brain Scan Tests?

MSNBC has an article by Amanda Chan on the recent "autism" brain scans Brain scan 'best thing so far' for detecting autism. The article  cautions that the fMRI tests used in a recent study have to be run many times and achieve similar results before the test can be put to clinical  use. The article also does point out that the "autism" subjects in the test were all persons with high functioning autism.  Notwithstanding the cautions expressed the article still  refers to the test results in terms of detecting autism with substantial accuracy  not just high functioning autism.  Given the large numbers of persons with Autistic Disorder who have intellectual disabilities  references to high functioning autistic persons as being representative of autism generally are inaccurate and potentially misleading.

In Study: More Hope for a Brain Scan for Autism Meredith Melnick of TIME also reports on the recent brain scan studies and the same pattern emerges. The use of high functioning autistic subjects only is noted and cautions expressed about the need for more tests.  But once again the article indicates that the study results were able to detect "autism" in a large,  93%, of cases. There is even a reference in the article to "the autistic brain" when describing the results of a recent London MRI study which found that "the test was able to identify the autistic brain with about 90% accuracy."

Influential media sources like MSNBC and TIME are creating a popular view of "autism" as being represented by "high functioning autism".  They are doing so based on a string of research studies which use high functioning autistic subjects and exclude those with low functioning autism. The cautions expressed in such articles are likely to be forgotten as more and more studies of high functioning autistic subjects publish their reports and the excitement builds that a reliable brain scan test has arrived.

Autism disorders are neurological disorders.  Whether and to what extent various genetic and environmental considerations come in to play are matters of great contention. But to my knowledge no one except a few ignorant, cynical comics dispute that autism disorders are neurologically based.  Brain scans do in fact appear to be promising as tests that could distinguish "autism" neurology from others and thereby provide a reliable biologically based diagnostic tool. But only if study participants from all points on the autism spectrum are considered.

Unless low functioning and intellectually disabled subjects are included in the studies used to develop autism brain scan tests such tests could only in honesty be used to detect high functioning autism and could not rule out low functioning autism in any given case.

We should not lose sight of these fundamental truths when developing "autism" brain scan tests.

Posted in , , , , |

Autism and Personality: Conor Likes Variety




There are many generalizations made about the personalities of persons with Autism Disorders.  Some are based on solid research and direct observation ... some appear to be based on what would make a good story.  My son Conor, who has an Autistic Disorder diagnosis, assessed with profound developmental delays, is inclined to fixate on things like his favorite song ... the Canadian National Anthem.  But even though he will play our anthem endlessly on our computers Conor also likes to listen to different versions of the anthem includng playing it in French, one of Canada's two official languages, and in Spanish. 
When we go shopping for groceries he often picks out peppers which he loves.  He also likes to pick out the "rainbow" packs of peppers with one green, one red, one yellow or orange.  Yesterday I was in a store with Conor picking up a few odds and ends when he suddenly walked briskly towards the other end of the store where he picked up a package of  chocolate Voortman wafers.  He then picked up a package of strawberry and vanilla Voortman wafers.  After we got home Conor wasted no time having some wafers .. one chocolate, one strawberry and one vanilla.
I bought all three packs. They will not go to waste.  And Conor had been great during our shopping.  As the strern Dad who lays down the law and is not, like his mother, wrapped around Conor's little finger (just kidding) I wanted to give him a treat.  I also wanted to reward his independence. Sometimes in the stores he can be a bit clingy but when he saw the wafers .... boom ... he was gone.
There is no great autism generalization painted by this story.  It is just Conor who is autistic and who likes variety in his music, in his foods, and in his socks (he often likes to wear one white and one black sock). One of his great strengths through the years has been his ability to transition smoothly from one therapist and teacher aide to another.  His preference for variety may be a part of that strength. Only he knows for sure.

Long Term Autism Care in New Brunswick: An Open Letter to the Complex Needs Co-Chairs

December 2 2010

Co-Chairs Bernard Richard and Shirley Smallwood 
Consultation Process for Centre of Excellence for Children
and Youth with Complex Needs

Dear Mr. Richard and Ms Smallwood

I am writing you this open letter to address what I believe is  a fundamental flaw in the well intentioned complex needs consultation process that you co-chair. I do so even despite the respect I have for both of you.  The flaw consists of ruling out, as you did in your opening remarks at the Fredericton Inn, any "institutional" recommendations.  The flaw consists in taking a buzz word approach to addressing the real life challenges presented by children and youth with  with complex needs. This approach   implicitly praises solutions which mention "community" and  mocks realistic needs based discussion of a centre as old fashioned "bricks and mortar" thinking.  The flaw consists of believing, contrary to the evidence, that all children and youth with complex needs will ultimately recover well enough to live in an undefined "community" setting.  

This unrealistic "community" philosophy has dominated thinking in New Brunswick for decades and is in fact responsible for  forcing youths and adults with autism disorders and other challenges into psychiatric care  hospitals after the inadequate group homes either can not or will not take them.  Any discussion of developing realistic, long term care needs of severely challenged youth and adults with autism has met with dismissive rhetoric  as took place at the Fredericton Inn and subsequently at the Connecting the Dots pep rally at McLaggan Hall.  Over several years of autism advocacy I have encountered the rhetoric of the inclusion philosophy adherents and have seen it prevent candid discussion of serious issues. I heard that same rhetoric from you at the Fredericton Inn Mr. Richard when you declared that you would not make "institutional"  recommendations.  I heard it again during the Fredericton Inn consultations when the discussion table to which I had been assigned was joined by NBACL President Clarence Box who sat down and immediately declared that we had to get away from  "bricks and mortar" concepts. I heard the rhetoric again  at the Connecting the Dots Pep Rally at McLaggan Hall at UNB when you too spoke of moving past "bricks and mortar" thinking.  Such rhetoric is dismissive and harmful to the interests of those who, ultimately, need bricks and mortar facilities in which to live decently and securely  and receive the expert care they need.

With great respect I have no illusions about the complex needs consultation process. Your recommendations are unlikely to  address the long term needs  of persons like my son now 14 who is severely autistic with profound developmental delays.  Your recommendations are unlikely to address the needs of the autistic individual who has been living in Spurwink for several years. Your recommendations are unlikely to  address the needs of youth  and adults with autism disorders who have resided in hospital wards, hotels and even at the Miramichi youth correctional centre.   

I offer this correspondence with  my family and other families like the Michaud  family featured recently on  CBC  in mind.   The Michaud's, who I have met,  are loving and caring parents who have faced a challenging situation in raising and caring for their son with many severe challenges including Asperger's and violent behaviour as was described in the feature.  The Michaud family courageously appeared on CBC television and asked for long term care facilities to help their son and others facing similar challenges.  They spoke honestly about the violence they and their children have lived with in their home. 

The system in place in New Brunswick, a system dominated by community inclusion philosophy,  has not provided real life, evidence based solutions to help the Michaud family and other families facing severe challenges in raising autistic children, and other children with complex needs,  as they enter adolescence and adulthood.   The flaw in your thinking is that you fail to recognize that it is the community inclusion philosophy and its powerful advocates, including Order of Canada recipient, former New Brunswick Human Rights Commission Chair,  and now Premier David Alward's transition team advisor Gordon Porter,  which have prevented development in New Brunswick of modern, community based long term care solutions for youth and adults with autism disorders and other complex needs. With great respect you appear to be poised to recommend curing problems by recommending more of the same philosophy that has done so much to create those problems.

If you look at the CBC web site you will find an article featuring  Dr. Paul McDonnell which praised New Brunswick's early intervention and school based autism programs but also spoke to the need for an autism centre of excellence one which would  include the ability to provide long term care for those autistic persons who will not be able to live in community based facilities.  I believe Ms Smallwood is well aware of the leading role played by Dr. McDonnell, a clinical psychologist and retired psychology professor,  in building New Brunswick's preschool and school based autism service delivery model that has received recognition and praise from such experts as Eric Larsson of the Lovaas Institute and David Celiberti of the Association for Science in Autism Treatment.  Dr. McDonnell stated:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.

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 behaviorally trained supervisors and therapists.

Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."

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.

According to the most recent CDC estimates 1 in 110 persons have an autism disorder diagnosis.  The recommendations of Dr. McDonnell, a New Brunswick autism expert knowledgeable about autism realities in New Brunswick,  should be part of any recommendations for youth with complex needs that involve autism disorders.  If you are not going to address these serious challenges in a meaningful way, as Dr. McDonnell has done,  I would regretfully submit that  you will be doing  a serious disservice to many youth and adults with autism disorders ...  people that I do believe you want to help.

Respectfully,

Harold L Doherty

cc. Facing Autism in New Brunswick

Posted in , , , , , , , |

When things just go the way they should

We are having one of those weeks where I LOVE homeschooling my children! I laugh at this sentence because there are definately days where I think I am off my rocker for even trying to educate my own but most of the time it is the highlight of my life.

To snuggle up to my children on a snowy day and read a good biography or to watch them create countless flags for different countries (including some made up ones) just warms my heart.

I am not the best mom in the world and my kids are not always ideal BUT we are meant to do this and I can't imagine being anywhere else when those little invisible light bulbs go on above their heads and I am somehow imparting knowledge onto the next generation.

Facing Autism in New Brunswick Makes Canadian Web Log Awards Final 5 in 2 Categories



Well I have to admit I am pleased to make the Final 5 of the Canadian Web Log Awards in two categories - Health & Wellness and Ecology & Social Justice.  I do in fact appreciate the recognition by the CWA site in these two categories.  I believe the CWA's have only been around a short while but they have a nice web site and appear to put a lot into their product.  I thank everyone involved for Facing Autism in New Brunswick's final 5 placement in two categories especially in these two categories.

Posted in , , , , |

An Enhanced Autism Group Home System and Center is Needed to Fill the Gaping Gap in New Brunswick's Autism Service Model



In ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" New Brunswick, Canada  was recently described by David Celiberti Ph.D., BCBA-D, President Association for Science in Autism Treatment as being a leader in the provision of autism services.

Responding to the referenced  title of a CBC article on the state of autism service delivery in NB Dr. Celiberti expressed the view, with which this humble father and autism advocate agrees, that  NB is a leader in providing evidence based effective preschool intervention and  education of autistic children.  Dr. Celiberti goes on, however, to point out correctly, as did the CBC article written by Paul McDonnell a leading New Brunswick autism expert, Professor Emeritus (Psychology) and clinical psychologist working with autistic children, that New Brunswick is still lacking in adult autism services. 

In fact New Brunswick has no autism specific youth and adult residential care system.  Instead NB autistic youth and adults who require residential care services are placed in general group homes with no autism specific staff and no professional autism specific expertise readily available.  For those who require autism specific treatment the situation becomes horrendous with some youth being placed on the grounds of correctional facilities, some youth and adults living in hotels, hospitals wards and psychiatric institutions. Some are exported out of the province and out of the country.  

In his CBC comments Dr. McDonnell provides clear direction on what is needed to fill the adult service gap in New Brunswick's autism service delivery model:

"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 can do much, much better.


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."

An enhanced autism specific group home system throughout the province with a major center, providing ongoing training, leadership and supervision, as recommended by Dr. McDonnell is exactly what is needed to fill the gaping gap in New Brunswick's autism service delivery.  Autism advocates, including me, have advocated for enhanced autism specific group homes and a center for several years but government has not responded.

In New Brunswick, parents, politicians and civil servants stepped up to the plate and became a leader in helping autistic children.  Surely we can do the same for our autistic youth and adults.  Surely we can provide decent, secure, modern living environments for our vulnerable autistic youth and adults in need.

Posted in , , , , , |

Search

Swedish Greys - a WordPress theme from Nordic Themepark. Converted by LiteThemes.com.