Sunday, November 02, 2008

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.





4 comments:

jonathan said...

one of the reasons that higher functioning autistic persons are more commonly used as research subjects are issues of compliance. It is much harder to get a more severely intellectually impaired autistic person to cooperate with the researcher. You may have a valid point that this sort of distorts the view of autism but when looking at the studies you have to look at the sample that was studied and not generalize that sample to other types of persons.

Just as you can look at the neurodiversity movement who in some instances claims to speak for all autistic persons but has as many or more females than males in their ranks in spite of the well documented 4 to 1 ratio of males to females in the general population of autistics.

Arthur Golden said...

Based on your comments in this blog and those of Tony Tamer on the FEAT of BC Discussion Board, I have not bothered to actually read "Positively Autistic" of CBC by Peter Mansbridge, but I accept the concerns expressed by you and Tony Tamer. I think it is worth adding from the comments of Tom Tamer his quote from Temple Grandin (whom Tom states is "a real autistic who is NOT against ABA"):

"The problem is, you talk to parents with a low-functioning kid, who've got a teenager who still goes to the bathroom in his pants and who's biting himself all the time. This guy destroys the house, and he's not typing, no matter what keyboards you make available. His life is miserable."

As the father of a 36 year-old son Ben, who is completely nonverbal with low-functioning autism, I think I can make some further comments.

My son received ABA-type services for 5 years from ages 8-1/2 to 13-1/2, with the first 1-1/2 years at the May Institute for Autistic Children in Chatham, Massachusetts. But at age 13-1/2, I would have still stated that "His life is miserable."

So I am not so sure that ABA is a solution for all persons with low functioning autism - and I know other parents with similar experiences.

On the other hand, I do share your concerns that "...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..." It does appear that the Princeton Child Development Center in New Jersey USA has used lifetime ABA-type services which has been a solution for some and may be a model for you to consider. But, there are other models, which I have obtained for my own son for the past 23 years, which have given him a happy life that I pray will continue.

The ideal world of Temple Grandin would somehow get rid of low functioning autistic persons (per an interview she gave 3 years ago), but my ideal world would assist low functioning autistic persons to have a happy life, using whatever approaches have been shown to actually work.

Arthur Golden

Anonymous said...

My son is also low functioning. I found this website while looking desperately for advice on how to get him to stop attacking me (pinching, hitting). It took me two hours this morning to get him to take his medication. He's not yet bathed or shaved and I almost don't dare try. This will be some Thanksgiving! I, too, am beyond sick of the public's misperception of autism. When a high functioning person with autism is interviewed I can't watch/read. Those people may be on the spectrum, but the media is doing us all a huge disservice by continuing to profile ONLY the verbal, cooperative, fully toilet trained non-droolers.

Autism Reality NB said...

Anonymous

Thank you for sharing your story.

Harold Doherty