Autism's Outcasts

Parents like Heather R understand that autism is not always Positively Autistic. Her son is one of autism's outcasts:

“ I have a son who is 14 and severely autistic as well. I have had workers in my home with him for 2 years now. They told me it was supposed to be only until we could get him some help. He needs an assessment and a medication overhaul where he went completely out of hand and uncontrollable during puberty. No hospital in n.b can take him. Moncton refused him. I.W.K has been saying for the last year and a half they have no psychologist. I see a psychologist once every six weeks or so and we try something else. One of the medications made him bust through windows another gave him seizures. Right now we have between 10-15 restraints were the workers hold him for from 15-40 minutes of temper tantrums. He wears a helmet so he won't poke out his eyes. Hockey shoulder pads so he won’t bite his arm to shreds. He was bad when the workers first came with severe wounds up an down his arms but the hospital said it was no place for him, so we treated him at home. He also wears towels on his hands to prevent pinching and towels on his legs. My little boy is in crisis and we have no hospital that can even evaluate him. I have been waiting for help for 2 years, how much more can we wait. Sure they'll put him in a house if I can't stand it anymore but they would get him treatment.”

There is in the autism world a large number of autistic persons, like Heather R's son, who are not featured on CBC, CNN or most of the mainstream media with its generally shallow treatment of what are now referred to as the Autism Spectrum of Disorders. (One major exception is the Vancouver Sun with its representative and responsible series Faces of Autism). These autistic persons are Low Functioning, suffer from cognitive impairment, mental retardation or any other term which may be deemed politically correct and many of them live their lives well away from the cameras or public attention. They are not featured in splashy CBC and CNN features. They are autism's outcasts. For them, life is not always Positively Autistic.

Media Exclusion of Autism's Outcasts

The CBC has recently featured, in "Positively Autistic", a handful of persons with High Functioning Autism and Aspergers, very intelligent, articulate individuals who purport to speak for the many Low Functioning Autistic persons even while expressing disdain for the terms High Functioning and Low Functioning. (High Functioning and Low Functioning are terms used throughout the professional studies of Dr. Laurent Mottron also featured on the CBC's misleading effort "Positively Autistic". Dr. Mottron himself has worked with and studied High Functioning Autistic persons and persons with Aspergers).

The CBC, following a path already well travelled by CNN, has featured Michelle Dawson, Ari Ne'eman, Amanda Baggs and other high functioning autistic persons who use the "royal we" in declaring that autism is not a disorder but simply a "natural variation". By this ideology autistic disorders should be celebrated not cured and autistic people do not want to be cured. Attempts to describe the differences between these high profile celebrity autistic persons and the low functioning autistic persons who have difficulty understanding the world are at risk for their lives, and will end up living in the care of others long after parents are deceased is disparaged. The reality of the less fortunate is abandoned for the ideology and agendas of the more fortunate. As for the media itself, it doesn't make for feel good viewing material to see the harsher realities of low functioning autistic persons who live in institutional care or engage in self injurious behavior.

If Peter Mansbridge and the CBC want to practice real journalism they should show the whole balanced picture of autism. For many autism is not "Positively Autistic". For many autistic persons life is not so pretty. The CBC should visit the adult autistics living on hospital wards, or in institutions where they eke out a bleak existence far from the media spotlight enjoyed by the celebrity high functioning autistic persons featured on Positively Autistic. The CBC should talk to the parents who can no longer care fore their adult autistic children and have to give them up to the state.

Autism's Muddled Terminology

The word Autism is used loosely on the internet and mainstream media, and sometimes in scholarly journals and serious professional studies, to refer to any of the disorders listed as Pervasive Developmental Disorders, in the DSM-IV, the most recent edition of the Diagnostic and Statistical Manual of the American Psychiatric Association. The public, and professionals, often refer to the PDD's as Autism Spectrum Disorders. People with any one of the distinct PDD disorders are often referred to as "autistic". Unfortunately this lumping together of various PDD or autism disorders, and of high functioning and low functioning "autistic" persons, can have negative impacts on the value of research concerning PDD's.

It can also have a negative impact on public awareness of, and understanding of, lower functioning persons with Autistic Disorders, particularly those with serious cognitive deficits. This lumping together has also resulted in some High Functioning Autistic persons (to borrow an expression found in many studies by Dr. Laurent Mottron), and persons with Asperger's Disorder, (Ari Ne'eman founder of the Autism Self Advocacy Network, acutally has an Aspergers diagnosis) purporting to speak on behalf of ALL persons with PDD's, including those lower functioning persons with serious cognitive deficits whose life realities are so drastically different from their own. These "autism self advocates" actually interfere with the attempts of parents and caregivers to obtain services for their own children and adults who can not speak for themselves. The high functioning "autism" self advocates also actively obscure in the mainstream media the very existence of lower functioning autistic persons, persons with serious cognitive impairments - autism's outcasts.

Autism Research - Exclusion of Lower Functioning Autistic Subjects

In The face of Autism research as reflected in the IMFAR looking glass, Research in Autism Spectrum Disorders 2 (2008) 385–394, authors James M. Bebko, Jessica H. Schroeder, Jonathan A. Weiss, Kerry Wells, Kristen McFee and Gayle M. Goldstein reviewed the abstracts from a major autism conference (IMFAR) from 2004 to 2006. They found an increase in the proportion of studies with preschool or infant participants. There was also a decrease in studies using lower functioning samples, and an increase in studies using Mixed samples. The use of control groups generally decreased, and the use of cognitively impaired comparison groups remained low:

In terms of the functioning level of participants, research in autism has tended to focus in recent years on the higher functioning range of autism (HFA) or those with Asperger Syndrome (AS). According to a meta-analysis of cognitive and behavioral studies by Mottron (2004), over 75% of published studies on autism in 1999–2002 were comprised of participants with no identified cognitive delay. Such focus limits the generalizability of findings, as a large portion of individuals with autism and autism spectrum disorders have associated cognitive impairments,with estimates ranging from 40% to 70% of the population (Fombonne, 2005; LaMalfa, Lassi, Bertelli, Salvini & Placidi, 2004). Clearly a more balanced range of studies, with appropriate comparison groups is necessary.

....

Associated with this profile in the use of comparison groups in studies presented during this time period is an apparent decreasing representation of individuals with low or moderate intellectual impairments in the studies. One risk of such a trend is that our understanding of autism may become biased to the higher end of the functioning continuum. It is important that research continue to include individuals with cognitive impairments to ensure that our knowledge based on etiology, assessment, and intervention continues to expand across the entire range of expression of the disorder.

The authors' emphasis on the importance of inclusion of autistic persons with cognitive impairments in future research echoes a concern expressed by Dr. Laurent Mottron in his 2004 paper noted above Matching Strategies in Cognitive Research with Individuals with High-Functioning Autism: Current Practices, Instrument Biases, and Recommendations, Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004 :

The charting of cognitive deficits and strengths among persons with autism requires comparison of their performance with that of another group. In addition to differences in clinical status, the target and comparison groups can differ on many factors, such as age and level of functioning, which may influence the cognitive performances under study. Therefore, some kind of control should be used to limit the confounding effects that may result from this heterogeneity in these groups.

As autism is a condition that begins early in life, is observed across the range of functioning levels from severe mental retardation to superior intelligence, and may or may not be accompanied by identified neurological syndromes, a random group of individuals who satisfy the criteria for the diagnosis is likely to be heterogeneous at multiple and possibly interacting levels. This heterogeneity complicates the matching procedure and, accordingly, leads to the study of specific subgroups.

...

Some recommendations follow from these two studies. The first recommendation would be to focus on people with autism with mental retardation as well as on higher functioning persons. According to the current trend revealed by Study 1, matching issues, availability of high-functioning individuals and other practical concerns, results in an emphasis on cross sectional studies involving adult, intelligent individuals with PDDs. Besides the positive aspect of increasing our understanding of high-functioning individuals, one may question whether this research strategy will also be associated with conceptual and empirical insights about persons with autism who function in the range of mental retardation.

The trend toward under representation of autistic persons with cognitive impairments is very significant given the large proportion of autistic persons who also have cognitive impairments. The Bebko article referred to studiesn indicating that 40-70% range of persons with PDD's also have cognitive impairments. The Canadian Psychological Association in its Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006
stated that:

• Cognitive impairment is present in about 80% of persons diagnosed with Autism and
general intellectual functioning is most often below average. Persons diagnosed with
Asperger’s Disorder have average to above average intellectual functioning.

Autism's Outcasts and Some Harsher Autism Realities

Unlike the HFA persons and persons with Aspergers featured on the CBC the parents of Low Functioning Autistic persons, including me, know the fear that happens when their child goes missing as so often occurs with autistic children. We also have to deal with the realities that our children will be unable to attend Simon's Rock College for gifted youth (Amanda Baggs), excel as an employee in the complex work environment of Canada Post or intervene in the Supreme Court of Canada to argue against government funding of evidence based inteventions for autistic children (Michelle Dawson).

My son with Autistic Disorder, who can not speak for himself beyond a very basic level, is Low Functioning. Describing him as such is both honest and accurate. Attempts to obscure his reality by simply describing him as "Autistic" and lumping him together with the articulate Baggs, Dawson and Ne'eman is a violation of his most basic rights to be known by the world as who he is. He will require care by others for his entire life long after I am dead.

The hundreds of thousands of parents who are fighting for treatment, and seeking cures, for our autistic children do so because we know that our children deserve the best lives we can give them. Estee Klar-Wolfond, featured on CBC, is not representative of most "autism parents" who have fought hard for preschool funded autism interventions, appropriate educational assistance, tertiary care for those autistic children who engage in serious self injury and for decent adult accommodations.

Heather R's son is one of many of autism's outcasts, low functioning autistic persons whose stories are unsolicited for flashy articles in New Yorker Magazine or appearances on CNN and CBC. They are autism's outcasts. And it is we, their parents, and other caregivers, who will continue to fight on their behalf.

Invisible Autistics: The Severely Autistic

Parents of children with Autistic Disorder have often encountered uncomprehending stares when their children suffer public meltdowns. Service providers routinely state that mere physical inclusion in a classroom will inevitably help all autistic children and then blame the children when they over overwhelmed. These responses arise from ignorance. Parents strive to educate and inform but they must overcome persistent ignorance of the realities of autistic disorder.

The ignorance is perpetuated by a mass media - read CNN, NY Magazine and now ABC News, addicted to feel good, fluffy tales of autism focused on a few with exceptional abilities and on the barely autistic persons with Aspergers who lead the outrageously misnamed Autism Rights movement; a movement which in fact suppresses the rights of those with Autistic Disorder and severe deficits.

There are some exceptions to the feel good media focus particularly here in Canada. The Vancouver Sun took a realistic look at autism in its Face of Autism series. Recently CBC New Brunswick did a feature on a severely autistic teen living with his parents who have to use restraints to protect family members from acts of aggression. In neighboring Maine, the Bangor Daily News recently featured the story of a Maine family struggling to care for their autistic adult daughter at home in Crisis in Caring.

Generally though attempts to get the truth out about severe autism realities are ignored by the mainstream media. I was in contact with one of the major news networks recently and suggested that they do a feature on the lives of autistic persons living in institutional care. I am not holding my breath on that one. The leaders of the so called Autism Rights movement actively work to suppress the truth being told about persons with severe autism deficits. They organize petitions to harass institutions which use negative images of autism as Dr. Koplewicz and the "Ransom Notes" campaign found out. The families who courageously told the truth about the challenges faced by their autistic children in the Autism Every Day video have been vilified by the leaders of the alleged Autism Rights movement.

Here is the truth about children with severe autism disorders and deficits:

1) Their parents and families love them deeply; that is why they seek to help them overcome their deficits and challenges;
2) Many ARE doomed to lives of dependency and residential or institutional care;
3) Some injure themselves, family members, educators and care givers very seriously through such actions as biting and head banging;
4) Some are so sensitive and averse to specific textures and tastes that they virtually starve themselves;
5) Some have serious intellectual, communication and behavioral deficits;
6) Some lack understanding of the real world and its many danges such as automobile traffic or drowning.

These are only some of the harsh realities faced by severely autistic persons and their families. It is because of these realities that families, persons who actually care about THEM, try to find treatments and hopefully some day a cure, to help them live a fuller, longer, more independent life. No one is trying to cure the high functioning persons with Aspergers who lead the "Autism" Rights Movement. Their anti-cure rallying cry actually has little or nothing to do with them. Their anti-cure rallying cry is really an attempt to suppress the rights of the severely autistic about whom the ARM leaders care very little.

It is, and always will be, parents of the severely autistic who love them, care for them, sacrifice for them, and try to help them who seek to cure their own children and to make the world, including such "news" organisations as CNN, NY Magazine and ABC News aware of their existence.

They are the invisible autistics. They are our children, our brothers and sisters. And we love them as they are. But we also try to make their lives better through accommodation, yes. Through education, yes. Through treatment, yes. And if cures become available, through cures.
And we will undertake these challenges even though our severely autistic family members remain invisible to the world; even though their rights, even knowledge of their existence is suppressed by the leaders of a movement which falsely pretends to speak on their behalf.

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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 News of the Year - 2007

These are my personal choices for top autism news of the year - 2007


Autism Research (Tie)

Autism genome scan reported.
Unified Theory of Autism published.


Autism Health Care

American Academy of Pediatric autism reports published:
Identification and Evaluation of Children with Autism Spectrum Disorders
Management of Children With Autism Spectrum Disorders

Autism Awareness (3 Way Tie)

Autism Every Day Video screening at the Sundance Film Fesitval.
Faces of Autism series published in the Vancouver Sun.
World Autism Awareness Day, April 2, declared by United Nations.

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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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Autism Reality from Roanoke

All autistic persons are not savants. There is a wide range of severity of autism. There are some who are intellectually impaired and some who can not communicate. But if you went by some mainstream media sources like CNN, Newsweek and the UK Guardian, by Hollywood movies or by internet sites devoted to autistics who choose to become non-speaking autistic adults, after years spent as a speaking person with a different diagnosis, you would know little of the realities of life for severely autistic persons and their families.

The realities of life for severely autistic children and their families were well and accurately portrayed in the Autism Every Day video and in the excellent Faces of Autism series in the Vancouver Sun. And the attached link and excerpts from The biggest frustration is you don't know in The Roanoke Times, Roanoke.com, August 13, 2007, also provides a realistic portrayal of life for, and with, a more severely autistic child. It is the story of Nicholas Crouch-Hullender a non-verbal 8 year old autistic boy.


http://www.roanoke.com/news/nrv/wb/127717

A few months later, when Nicholas turned 2, he was officially diagnosed. Crouch-Hullender had an answer to her son's unusual behavior.

And that's when her questions really began. Would Nicholas ever talk? Could he ever live by himself? What teaching method or special diet would be best?

Years later, Crouch-Hullender is still wrestling with such questions about her son, who is now 8 and can say just two words, "hi" and "bye," though he can type his name and can use sign language to say "I love you" to his family.

...

Nicholas tends to pinch when he gets mad. A naturally fair-skinned redhead, Crouch-Hullender now frequents a tanning salon so that bruises from where her son has grabbed her won't show as much.

Nicholas is among the roughly 40 percent of children with autism who do not speak. Many children with autism are also mentally impaired, but to what degree can be tough to tell because of their severe communication barriers.

Crouch-Hullender said her son is "very intellectual" in some regards but still struggles with some tasks a kindergartner could do.

When Nicholas was 5, doctors told Crouch-Hullender her son could never get by on his own, but she holds out hope that he will inherit her house one day and be able to live at least somewhat independently.

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?