Autism and Wandering: It's A Matter of Life and Death

The Vancouver Sun is one of the very few media outlets that has presented an honest, reality based picture of autism disorders  to the public.  The series Faces of Autism remains one of the most comprehensive, honest portrayals of autism ever presented by mainstream media.  It comes as no surprise then that the Vancouver Sun has highlighted the important autism issue of wandering autistic children for exactly what it is ... a life and death issue.

In Search for missing boy highlights autism issue Autistic children are prone to wandering, forcing parents to take drastic measures to protect them the Vancouver Sun presents a Mike Appleyard/Postmedia News report on Adam Benhamma, the young, mute, autistic boy from the Laval area near Montreal who has been missing for several days near icy waters. The article tells of the tendency of autistic children to wander, of the efforts parents must make to protect their autistic children from wandering and the impact it has on them, and reports on the IAN, Interactive Autism Network,  announcement of a national survey to study the prevalence of wandering among individuals with autism.

Veronica Fraser, mother of James DeLorey,  the young autistic boy from Nova Scotia who was lost in a snow storm and died in hospital shortly after being found provides insight from her son's tragedy. Wendy Fournier of the National Autism Association comments on the IAN study and on her own personal experience with her wandering autistic child:

"Fournier said she hopes this study will help parents understand why autistic children wander.


"We have parents who literally sleep outside their child's door because they're afraid their kids are going to get out of the house. It's a huge, terrifying problem," she said.


Fournier noted that her daughter Aly is autistic, and said she has experienced the fear of losing her child -something that is common among parents of autistic children.


"One day I was sitting on the couch, drinking coffee. All of our doors are completely locked -there's no way she can get out of the house. And my doorbell rings. It's my neighbour telling me that my daughter is next door trying to get into the swimming pool. And I have no idea that she was even out of the house.""

I have remarked on several occasions on this blog site about my personal experience with wandering, of the day when my son Conor slipped out of the house while I was on the phone discussing a business matter.  Thanks to good luck, a Good Samaritan who removed Conor from traffic on a busy street and him to a safe location, and our local 911 service Conor, and I, were very fortunate, we came out on the happy side of  the life and death reality of wandering autistic children.

Adam Benhamma and his family are living with that life and death reality right now.

I hope that Adam, despite the grim situation, is found safe and sound.

On World Autism Awareness Day Remember the Invisible and Forgotten Ones

Two days from now, on April 2, the world will recognize for the second time World Autism Awareness Day. WAAD is the result of an outstanding initiative led by Autism Speaks and the State of Qatar.

As the father of a 13 year old boy with autistic disorder, assessed with profound developmental delays I thank both Qatar and Autism Speaks for this monumental step forward in facing the challenges of autism spectrum disorders around the globe.

Everyone with an autism spectrum disorder (Pervasive Developmental Disorder) by definition has serious deficits or challenges to face. For each such person their challenges are undoubtedly large and complex realities of their daily lives. There are different degrees or severity of autism disorders though and this is implicitly recognized in the DSM which in the definition section of Asperger's Disorder expressly excludes persons with clinically significant delays in language, cognitive development or age appropriate self-help skills. (Some of the very intelliglent, highly articulate leaders of the "autism" advocacy movements are in fact persons with Asperger's Disorder such as Ari Ne'eman and Alex Plank).

The mainstream media CBC, CNN, New Yorker Magazine for example tend to interview and present persons with Asperger's Disorder and higher functioning autistic disorder to the world as being representative of persons with autism. Very, very few features about autism focus on the invisible persons with severe forms of autism, the forgotten ones who live as adults in institutional care or very controlled community group homes. [The exception to this rule is the Vancouver Sun which provided the most comprehensive presentation of persons with autism from all points of the autism spectrum with its excellent Faces of Autism series. The Vancouver Sun, Pete McMartin, columnist, and Glenn Baglo, photographer, deserve full credit for daring to portray realities of life for persons from across the full spectrum of autism disorders and their families.]

The invisible autistic persons live in institutional settings because of the severity of their autism disorders. Some are violent towards themselves or others. Some lack the skills to function at all in the world without assistance. Simply closing such places is not an answer even if it makes the public feel better. For many, without institutional care they would have no where to live, no means of survival. For me such severely autistic persons are not invisible or forgotten. Unlike some of the dilettante, mainstream health "journalists" I have visited institutional facilities providing lifelong residential care and treatment to severely autistic persons. My son could well end up residing in such a facility after I am dead.

On World Autism Awareness Day I will think of all persons with autism disorders including my friends with Asperger's Disorder. And I will think of and remember the invisible and largely forgotten persons with severe autistic disorder. I will not ignore or forget them. I respectfully ask you to do the same.

It is my hope that World Autism Awareness Day continues in perpetuity and that long after I am dead people will be thinking of all persons with autism disorders, including the severely autistic, including my son, Conor Doherty.

Thank you for considering my request.

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Autism and Gordon Campbell's Vile IQ Flip Flop

"We now live in a province that lavishes millions of dollars on bobsledders and junkies, but nickels-and-dimes those with autism, fetal alcohol syndrome, the mentally challenged . . . and the families who worry about protecting them."

Pete McMartin, Vancouver Sun

Pete McMartin is the Vancouver Sun columnist who produced, with Sun photographer Glenn Baglo, a series of articles called Faces Of Autism one of the most accurate and comprehensive presentations of autism in the main stream media. In It was wrong months ago -- and it is still wrong today McMartin rips British Columbia Premier Gordon Campbell and Children's Minister Tom Christensen for reversing their stated positions on the use of an IQ of 70 as a measure in assessing elgibility of developmentally disabled persons for receipt of government services.

This week, Premier Gordon Campbell and Children's Minister Tom Christensen signed an order making an IQ of 70 or under one of the criteria for receiving services. They did so to do an end-run around a B.C. Court of Appeal ruling that the province could not deny services to the developmentally disabled on the grounds of IQ. The reversal arises from legal advice following an appeal court decision and is described as "temporary".

McMartin crticizes the arbitrary reliance on IQ as opposed to more realistic assessments of ability to function in society ... or face real life challenges ..... and uses the examples of two autistic persons whose parents he worked with in researching Faces of Autism, one just below the 70 IQ cut off, will be eligible for services, and one well over that number who will not. The mother of the autistic son with the higher IQ points out that her son has serious problems with socialization and problem solving, alone he might have no idea what to do if a fire breaks out in his home. He needs life long support to be able to cope.

But being "smarter" means Schuman's son needs fewer services and is better prepared to face the world as an adult, right?

Wrong. Autism is uneven in its effects. A child with autism might be able to, say, recite long passages of poetry from memory, but the same child may not be able to tie his shoes.

Pete McMartin called the Campbell government decision vile. I fully agree.

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Faces of Autism on World Autism Awareness Day

I do not hide my contempt for CNN's coverage of autism issues. CNN's coverage is, at best light and fluffy feel good stuff with little influence in the discussion of autism issues by people trying to actually help the many children and adults with autism disorders. At worst CNN coverage misrepresents the nature of autism and autism interventions. But there is some good media coverage of autism available. For World Autism Awareness Day I personally recommend that anyone interested in getting a realistic picture of autism try reading the Vancouver Sun's outstanding six part series Faces of Autism by columnist Pete McMartin with photos by Glenn Baglo.

Faces of Autism provides gritty, coverage of persons with autism, their life prospects and the impact that autism has on many families. The photos by Glenn Baglo are an honest portrayal of autism, particularly those of autistic 14-year-old Kristi Jansen who swings from crying to laughing to screaming in a matter of seconds. Kristi lived at home at the time of the series publication in April 2007. "Her body, home and family members -- especially her mother -- bear the scars of her violent outbursts that have only been calmed through years of expensive therapy."

Glenn Baglo's pictures of Kristi are very moving and strike a realistic chord for me as the father of a severely autistic 12 year old. She is shown smiling, laughing, crying and screaming. But she is never presented as the only face of autism. Faces of Autism emphasizes the range of autism realities. It is respectful, responsible and well informed coverage of autism and well worthing reading on World Autism Awareness Day - or any day.

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Autism Reality - What Happens To Our Children When We Are Gone?

I may have been too quick when I mentioned the excellent Vancouver Sun feature Faces of Autism as one of the rare exceptions to the "feel good" avoid autism reality mindset of the mainstream media. In Who will care when the caregiver goes? the Toronto Star discusses the fear that haunt many parents of autistic children - what happens when we are gone? Who will care for our autistic children, where will they live, and how? Will they be happy?

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CNN's Invisible Faces of Autism

Despite significant media attention being paid to autism low functioning, truly low functioning, persons with autism remain invisible. The exception to this rule is the Vancouver Sun which provided the most comprehensive presentation of persons with autism from all points of the autism spectrum with its excellent Faces of Autism series. The Vancouver Sun, Pete McMartin, columnist, and Glenn Baglo, photographer, deserve full credit for daring to portray realities of life for persons from across the full spectrum of autism disorders and their families. I say they "dared" to portray these realities because of the hostility generated by image conscious ideologues who do not want the world to know that there are autistic persons with only a limited understanding of the world, of language and of everyday realities. The caring families of the Autism Every Day video know all to well what happens when the real challenges of autism are presented truthfully to the world.

The Faces of Autism series remains one of the few competent commercial media treatments of the realities of truly low functioning autistic persons - other than news responses to horrific stories such as the middle aged autistic woman with no communication skills who was physically assaulted, repeatedly, by staff at a Long Island residential care facility until one staffer, assisted by videotape footage of the assaults, reported them and criminal charges responded. Another incident which elicited media attention to the realities of lower functioning autism is that of the Toronto woman who was allowed to starve to death while in the care of her adoptive sister.

Generally though the lower functioning autistic persons are not featured on the major media networks, news magazines or newspapers. After all, news today is also entertainment and it is easier to sell feel good stories than address hard realities. Anderson Cooper distinguished himself during Katrina by speaking truth to power, by pointing out, when politicians were busy patting themselves on the back, that people were dieing all around them, on the streets and rooftops of New Orleans. But when it comes time to examine the lives of autistic persons Mr. Cooper and the good Dr. Gupta do not visit the invisible autistics, those who do not attend "autism conferences", write internet essays and make videos for world consumption.

In CNN world, in Oprah world, in the world of the mass media generally, much good is done by highlighting autism and raising autism awareness. Unfortunately, for the largest media organizations, the realities of life for truly low functioning autistic persons are ignored. Mr. Cooper and Dr. Gupta do not see or visit the truly low functioning autistic persons who hurt themselves, who lack understanding of language or everyday dangers of life. For CNN and the big media organizations the faces of truly low functioning autistic persons do not show up on their cameras and our television screens, they remain invisible to CNN - and to the world.

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The Vancouver Sun is continuing its excellent six part series on autism with an article on early signs of autism in toddlers. One of the items listed in the article that we noted when Conor was young (there were several causes for concern early on with Conor) was a failure to play peek-a-boo at any point as a toddler. ( We did not know about autism we were just concerned ). A big one was his failure to learn to say mommy, daddy and other basic words. He also used to play for loooong periods of time sifting sand. He would hold one of those small toy plastic basket balls in his hand for hours. We have several pictures of him asleep in the car seat his hand grasping one of the primary colored plastic basketballs. We had an indoor swing set and Conor would lay with his face pressed firmly into the side of the set. But it was the failure to develop any significant language or show any substantial recognition of mom and dad that led us to seek medical attention for Conor and ultimately led to his initial diagnosis of PDD-NOS which was subsequently changed to Autism Disorder.

The signs of autism in toddlers
Vancouver Sun

A decade ago, autism diagnosticians developed CHAT -- the Checklist for Autism in Toddlers, designed to flag symptoms of autistic behaviour.

If the majority of answers to the questions are ‘no’ it is suggested parents talk with their family doctor or pediatrician. Here they are:

Does your child enjoy playing word/action games with others, such as peek-a-boo?

Does your child show emotions that fit the situation?

Is your child interested in what’s going on around him or her?

Does your child enjoy playing with many different toys, in many ways?

Is your child beginning to enjoy pretend play, taking turns and imitating other people’s play?

Is your child interested in approaching other children and joining a group?

Can your child easily indicate his or her interests and needs through words or sounds?

Is your child talking as you would expect?

Does your child point to, ask for, or try to show you something?

Does your child look at you when you talk to him or her?

Does your child imitate words or sounds?

Does your child imitate gestures and facial expressions?

Is your child comfortable with changes in routine?

Does your child hear and react to sound as you would expect?

Does your child enjoy being touched and touching other things?

Does your child move his or her hands like other children?

Does your child see and react to things as you would expect?

Does your child eat and drink a variety of foods and beverages?

Point to a toy and say, “Look, there’s a ------.” Does your child look in the right direction?

Use two cups and spoons. Invite your child to make juice with you -- mix, pour and drink. Does your child participate?

Ask your child to show you something in the room. “Show me the ———— ?” “Where’s the ———— ?” Does your child turn and point or touch the items?

Emotional Roller Coaster - Living With Autism

The following excerpts are from the first of a six part Vancouver Sun series Faces of Autism by columnist Peter McMartin and photographer Glenn Baglo. The author is correct to point out the uniqueness of each person with autism. It is also true though, that life with an autism family member and loved one, is an emotional roller coaster with considerable stress. Parents of severely autistic children will be able to relate to much of what is portrayed in this article.

http://www.canada.com/vancouversun/features/autism/index.html

Autistic 14-year-old Kristi Jansen swings from crying to laughing to screaming in a matter of seconds. Her body, home and family members -- especially her mother -- bear the scars of her violent outbursts that have only been calmed through years of expensive therapy. Kristi isn't a typical autistic child -- in fact, there is no such thing, as Pete McMartin and photographer Glenn Baglo discover. What families struggling with the disorder do have in common, however, is intense physical, emotional and financial stress.

http://tinyurl.com/2yctck

t is 3:30 p.m. on a Tuesday and Kristi Jansen, 14, of Langley, is just home from high school. She is tall and blond, with the long-limbed athletic build of a middle-distance runner. She is wearing a short jacket, leggings and a camouflage print skirt -- an outfit of combat chic that gives her an artful, edgy look, as if she were the kind of young woman who would gravitate toward the high school drama club. Her mother, Sandy, gives Kristi a Popsicle. Kristi settles on the den couch to watch television and Sandy turns on cartoons for her. Her mother and I go into the living room at the front of the house to talk.

And then, without warning, Kristi is screaming.

That is not quite right. Kristi is screaming and laughing and crying, one outburst after the other. They come within seconds of each other, intermingled, without pause, as if she were channel-surfing her emotions. ...... .....

Vancouver Sun - The Many Faces of Autism

One fundamental point which is repeatedly ignored in discussions, debates and arguments over autism is that "autism" as discussed in the media is a spectrum of disorders which includes autism disorder and other related disorders eg. PDD-NOS, Aspergers. There are many faces of autism, many different characteristics. The Vancouver Sun has published a balanced and understandable overview of autism disorders and promises to present a series of stories portraying different aspects of the spectrum of autism realities.

http://tinyurl.com/2jxw2l

"To understand the many faces of autism, first consider what it is not

Pete McMartin, Vancouver Sun

Published: Saturday, April 21, 2007

........

Simply put, there is no one profile that fits those diagnosed with autism. So, to define what autism is, it might be best by pointing out what it is not.

IT IS NOT A MENTAL ILLNESS OR A DISEASE.

It is a neurological and, ultimately, a biological disorder that affects the normal development of the brain in areas of social interaction, communication and sometimes cognitive skills. Usually, that disorder manifests itself before the child reaches three. (More on those symptoms and their diagnosis in a later instalment.)

THE CAUSES OF AUTISM ARE STILL UNKNOWN.

.....

AUTISM IS NOT A SINGULARITY.

It is a spectrum of disorders. On that spectrum are five related disorders, the three most common of these being classic autistic disorder (AD), pervasive developmental disorder not otherwise specified (PDD-NOS) and Asperger's syndrome. They share some behaviours but not others. Those with AD, for example, are often withdrawn and can be completely non-verbal, while those diagnosed with Asperger's syndrome can have normal verbal and academic skills but have extreme difficulty interacting socially with others.

THERE IS NO MENTAL STANDARD OR MEDIAN FOR THOSE ON THE AUTISM SPECTRUM.

Some have below-average intelligence, some are average and some are above average.

Additionally, mental abilities can be uneven. A person on the autism spectrum might be able to do complex math but be unable to tie his or her own shoes.

Some are capable of holding jobs and of living independently or semi-independently; some have the intellectual capacity to work but not the social skills to make their way in the work environment; some must receive 24-hour care their entire lives.

AUTISM IS NOT CURABLE.

It is a life-long condition. As one parent of a 12-year-old girl diagnosed with severe autism said:

"Parents have to understand:

"This isn't a sprint. It's a marathon."

The initial symptoms, however, can be ameliorated through a combination of intensive early childhood therapy and, it has to be said, the fierce and protective love of parents and family.

See www.VancouverSun.com for more from the six-day special feature

TODAY:

The story of a severe case, and life at home with an autistic child.

MONDAY:

Two mothers, their tears, and the sacrifices they must make living with autism.

TUESDAY:

How the health care system discriminates against those on low income.

WEDNESDAY:

Immigrants and the special challenges they face in dealing with autism.

THURSDAY:

The high cost of therapy, and a mother's determination.

FRIDAY:

Two autistic teens and their families face an uncertain future."