Showing posts with label Pervasive Developmental Disorders. Show all posts
Showing posts with label Pervasive Developmental Disorders. Show all posts

Thursday, April 01, 2010

On World Autism Awareness Day Please Be Aware That Autism Is A Disorder


On  World Autism Awareness Day, April 2, remember that autism is a disorder or more accurately a group of disorders.  It is not just a different way of thinking, a way of life or a political career path for a media savvy high functioning University student with little  exposure to, or actual knowledge of the realities of  severe Autistic Disorder. 

There are indeed many very high functioning persons with Aspergers and some high functioning persons with other "autism" disorders.  There are also many persons with Autistic Disorder and Intellectual Disability and others who are generally very low functioning, who will self injure, be at greater risk from the ordinary dangers of daily life, remain unemployed throughout their lives and live in the care of others in a variety of residential and institutional settings. These are facts.  

"Autism", or what is described as autism varies.  Autistic Disorder is currently shown in the DSM IV as one of the Pervasive Developmental Disorders:


299.00 Autistic Disorder

(A)
total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):



  1. qualitative impairment in social interaction, as manifested by at least two of the following:



    (a)
    marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
    (b)
    failure to develop peer relationships appropriate to developmental level
    (c)
    a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
    (d)
    lack of social or emotional reciprocity





  2. qualitative impairments in communication as manifested by at least one of the following:



     
    (a)
    delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)
    (b)
    in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
    (c)
    stereotyped and repetitive use of language or idiosyncratic language
    (d)
    lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level






  3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:




    (a)
    encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
    (b)
    apparently inflexible adherence to specific, nonfunctional routines or rituals
    (c)
    stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
    (d)
    persistent preoccupation with parts of objects











(B)   






Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

 






(C)






The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.


As currently described Autistic Disorder is exactly what it says. It is a disorder.  Not a social movement, not a culture and not just a different way of looking at the world.

On World Autism Awareness Day please be aware that autism is a disorder, one that impairs and restricts the lives of many persons who carry the diagnosis of Autistic Disorder and to some extent those that are diagnosed with other Pervasive Developmental Disorders.


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Friday, January 30, 2009

If Autism Is A Joy Why Is It In The DSM?

If autism is a joy, a simple natural variation that brings with it many blessings, then why is it found and described in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association?

Why are children as young as 2 years of age diagnosed with autism spectrum disorders ... Pervasive Developmental Disorders? Why do parents take their children for medical assessments that result in "autism spectrum" diagnoses? If their condition was one which brings such great joy then why visit a doctor to discuss it?

I am one of those old fashioned males who doesn't particularly like visiting doctors' offices. I will probably live a somewhat shorter life than I otherwise might because I just don't like going to see the doctor on a regular basis. I can not imagine going to a doctor to have him/her examine, assess or diagnose .... a joyful condition. What would possess some of the persons assessed as adults with autistic disorders to attend at the offices of a medical or psychological professional for an assessment of a joyful condition subsequently diagnosed as autistic disorder?

If the medical model of autism is to be cast aside, as those in the ASAN/Neurodiversity movement headquarters at the Change.org "autism" page advocate, then why refer to autism, a medical term, at all?




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Tuesday, January 27, 2009

My Son's Name Is Conor, He Is NOT An Autistic

Conor is my son.

He is a boy, a young man, who will soon turn 13. He is affectionate, fun loving and has a great sense of humor. He loves being outdoors and experiencing all of it - including the snow of which we get a fair bit in this part of the world. Like many other Canadian kids Conor loves to get right down in the snow and feel it's coolness. He likes to play with balloons and he stims, usually with straws. Conor loves to play on the computer, PBS KIDS, Dr. Seuss Youtube videos and above all O Canada videos. Last year he had a perfect school attendance record. Because he loves school and because he is a healthy, well cared for boy.

Conor has Autistic Disorder, assessed with profound developmental delays. He occasionally injures himself through biting or hitting his head with his fists in frustration. Sometimes he grabs others by the hair or pinches their faces hard. He is not trying to hurt anyone but it happens. Conor can not safely leave home unattended. At 13 we know he will not live independently. After I am dead he will be cared for by strangers. Conor has Autistic Disorder, a neurological disorder, a fact forgotten by self promoting "auties" and "autistics" who glorify neurological disorders.

I don't know what an "autistic" is. I know it is a label used by some persons who have Pervasive Developmental Disorders as a means of imposing their views of themselves and their disorders on families, parents and children they don't know, and with whom they have very little in common. It is a label based on their own self images.

Conor is a boy, a young man with a neurological disorder, but he is much more than his autistic disorder. He is my son, he is a great joy in my life, and the lives of others who know, help and care for him and I will not allow those who do not know him to reduce him to a label of their making and design.

Conor is not an "autistic".




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Thursday, November 06, 2008

ABC News On The Dangers of Autism

ABC News Medical Unit, to its credit, reports on the Dangers of Autism in Autism in America: A Perilous Diagnosis. With so many major news organizations presenting dangerously misleading glorifications of Autistic Disorder and other Pervasive Developmental Disorders, and fresh on the CBC's irresponsible presentation of the "Positively Autistic" ideology, it is helpful to have ABC present some of the harsher realities of autism.

The feature addresses several dangers to which autistic persons may be at substantial risk, including drowning, wandering, self injury, seizures and sexual predators. These are some of the concerns that parents fear await their autistic children. amongst those interviewed for the feature is Dennis Debbaudt who has done so much work raising public awareness and promoting good safety practices related to autism.





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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.





Tuesday, July 22, 2008

Autistic Teen Missing In Saskatchewan

From the Saskatoon StarPhoenix:

Police are asking for the public's help after a teen with autism went missing Sunday.

Albert Edward Smallchild, 17, was last seen at home on the 2900 block of 20th Street West at around 3:30 p.m. Sunday. The aboriginal teen, who is six feet tall and weighs 190 pounds, was wearing grey shorts and a grey short-sleeved shirt.

Police say Smallchild understands directions, but does not know his address or how to get home.


Monday, July 21, 2008

Missing Autistic Man Found Wandering In Australian Park

The Canberra Times reports that a 22 year old autistic man who ran away while walking with two other men to the tourist lookout inside the Goolman Conservation Park near Ipswich has been found safe and well with only a few bruises and scrapes.


The man, who was missing for nearly 20 hours, suffered only minor cuts and grazes despite braving heavy rainfall overnight and a minimum temperature of eight degrees.

Sunday, July 20, 2008

Ontario Failing Autistic Children - Canada Needs Medicare for Autism NOW

More proof that Canada needs Medicare coverage for Autism NOW can be found in the CP/Globe & Mail article Agencies decry Ontario's funding of child autism treatment by Maria Babbage. From Northern Ontario to Toronto and London non-profit agencies are underfunded and forced to cut services. Autistic children are losing out. Children are continuing to wait for a place on the lists to receive treatment:

Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.

“We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs,” Ms. Sayer said.

“We're worried about her whole future and what's going to happen to her in the end.”

Mother Upset Over Disappearance of Autistic Son from British Hospital

In WOODFORD GRN: Mother calls for inquiry into disappearance of Autistic son the Guardian reports that Lash Wilson, is calling for an inquiry into the disappearance from Goodmayes Hospital of her autistic son, James Wilson, who was left unsupervised while he went to a shop. Her son was found four days later in Colchester, Essex. Lash Wilson accuses the hospital of "appalling negligence". Ivan Corea of the UK Autism Foundation, which has joined in the call for an inquiry, also calls on government to protect the vulnerable:

" to tighten up all procedures and guidelines where children and young people people who are in the care of hospitals, residential centres, schools and other institutions to hold staff accountable "

In case anyone hasn't noticed yet many autistic people are at risk of wandering away from camps, homes, hospitals and residential centers. This autism reality should not be obscured by feel good rhetoric about the joy of autism. Steps should be taken to protect, and provide security for, those autistic people who need help.

Saturday, July 19, 2008

O Canada Conor Loves His Lawn Chair





We have to keep a close watch on Conor. He can not be left unattended or he could wander off as he did on a previous occasion. No one wants to be attended at all times though and while it is easy to give him some solitude in a room in the house it is more difficult outdoors and Conor loves to be outdoors. We let him go to the front and side steps but keep a constant watch.

The back yard offers more security and we can leave Conor there by himself (still checking frequently through a window). Conor loves the backyard and he loves to relax in his Canada flag folding lawn chair. A great buy for $9.

Autism Zero to Autism Hero - Illinois Governor Blagojevich

In an August 2007 comment I had referred to llinois Governor Rod Blagojevich as an autism zero. Because of his recent actions I now have to retreat from that description. Perhaps I did not understand the complexities of Illinois politics in the first place, which I admit is probably the case, but regardless, Governor Blagojevich has gone from autism zero to autism hero.

As described in Illinois Leading the Fight Against Autism on Health News:

The state's governor, Rod Blagojevich, used his amendatory veto ability to add autism coverage language from Senate Bill 1900 to House Bill 4255, a bill that required public employee health plans to cover preventative physical therapy treatment for multiple sclerosis patients. The new bill would be expanded to require insurers to cover autism diagnosis, psychiatric and psychological services, and to include occupational, behavioral, physical and speech therapy. Insurers would also be required to pay up to $36,000 a year per patient and to provide an unlimited number of medical visits for autism patients until the age of 21. Senate Bill 1900 was defeated earlier this year, despite broad bi-partisan support.

Hopefully Bill 4255 will become law, to the benefit of autistic children in Illinois. It could also stand as an example to other jurisdictions and politicians, including Canada and Prime Minister Stephen Harper, of how to address autism seriously.

Tuesday, June 10, 2008

Barely Autistic Spokespersons of the Alleged Autism Rights Movement Misrepresent Their Constituency

How many of the spokespersons for the alleged Autism Rights Movement are actually autistic? At best it can be said that, to the extent that they share symptoms with persons with severe Autistic Disorder, they are barely autistic, and not representative of those with severe Autistic Disorder and they have no right to speak on their behalf.

There are several disorders on the spectrum of Pervasive Developmental Disorders. As a group these are casually referred to as the Autism Spectrum of Disorders. But they are in fact the PDD spectrum of disorders. The five distinct disorders on the PDD Spectrum are described in the addendum following this comment.

There are similarities, and differences, between the five disorders. Many of the leaders of the so called Autism Rights Movement actually have diagnoses of Aspergers and tend to have far greater abilities to function in the real world then some people with Autistic Disorder. While some of the alleged ARM actually go to college have friends and even intimate relationships, appear in Magazines and on television, and claim that "we autistics" do not want to be cured, NONE of the persons with severe Autistic Disorder are represented by these elites.

The high functioning leaders of the ARM have little in common with the autistic children who wander away from their homes, sometimes to be lost forever in deadly traffic or drowned in neighborhood pools. The high functioning leaders of the ARM have little in common with the adults with severe Autistic Disorder who live in the care of others in group homes or institutional settings. They mispresent the nature of their movement when they pretend to speak on behalf of persons with severe Autistic Disorder.


The Five Types of PDD



(1) Autistic Disorder. Autistic Disorder, sometimes referred to as early infantile autism or childhood autism, is four times more common in boys than in girls. Children with Autistic Disorder have a moderate to severe range of communication, socialization, and behavior problems. Many children with autism also have mental retardation. The DSM-IV criteria by which Autistic Disorder is diagnosed are presented below.

Diagnostic Criteria for Autistic Disorder

A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
    (1) qualitative impairment in social interaction, as manifested by at least two of the following:
      (a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
      (b) failure to develop peer relationships appropriate to developmental level
      (c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
      (d) lack of social or emotional reciprocity
    (2) qualitative impairments in communication as manifested by at least one of the following:
      (a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      (b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      (c) stereotyped and repetitive use of language or idiosyncratic language
      (d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
    (3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      (a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      (b) apparently inflexible adherence to specific, nonfunctional routines or rituals
      (c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      (d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder. (APA, 1994, pp. 70-71)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(2) Rett's Disorder. Rett's Disorder, also known as Rett Syndrome, is diagnosed primarily in females. In children with Rett's Disorder, development proceeds in an apparently normal fashion over the first 6 to 18 months at which point parents notice a change in their child's behavior and some regression or loss of abilities, especially in gross motor skills such as walking and moving. This is followed by an obvious loss in abilities such as speech, reasoning, and hand use. The repetition of certain meaningless gestures or movements is an important clue to diagnosing Rett's Disorder; these gestures typically consist of constant hand-wringing or hand-washing (Moeschler, Gibbs, & Graham 1990). The diagnostic criteria for Rett's Disorder as set forth in the DSM-IV appear below.

Diagnostic Criteria for Rett's Disorder

A. All of the following:
    (1) apparently normal prenatal and perinatal development
    (2) apparently normal psychomotor development through the first 5 months after birth
    (3) normal head circumference at birth
B. Onset of all of the following after the period of normal development
    (1) deceleration of head growth between ages 5 and 48 months
    (2) loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
    (3) loss of social engagement early in the course (although often social interaction develops later)
    (4) appearance of poorly coordinated gait or trunk movements
    (5) severely impaired expressive and receptive language development with severe psychomotor retardation. (APA, 1994, pp. 72-73)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(3) Childhood Disintegrative Disorder. Childhood Disintegrative Disorder, an extremely rare disorder, is a clearly apparent regression in multiple areas of functioning (such as the ability to move, bladder and bowel control, and social and language skills) following a period of at least 2 years of apparently normal development. By definition, Childhood Disintegrative Disorder can only be diagnosed if the symptoms are preceded by at least 2 years of normal development and the onset of decline is prior to age 10 (American Psychiatric Association, 1994). DSM-IV criteria are presented below.

Diagnostic Criteria for Childhood Disintegrative Disorder

A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.

B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:
    (1) expressive or receptive language
    (2) social skills or adaptive behavior
    (3) bowel or bladder control
    (4) play
    (5) motor skills
C. Abnormalities of functioning in at least two of the following areas:
    (1) qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
    (2) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
    (3) restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms
D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia. (APA, 1994, pp. 74-75)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(4) Asperger's Disorder. Asperger's Disorder, also referred to as Asperger's or Asperger's Syndrome, is a developmental disorder characterized by a lack of social skills; difficulty with social relationships; poor coordination and poor concentration; and a restricted range of interests, but normal intelligence and adequate language skills in the areas of vocabulary and grammar. Asperger's Disorder appears to have a somewhat later onset than Autistic Disorder, or at least is recognized later. An individual with Asperger's Disorder does not possess a significant delay in language development; however, he or she may have difficulty understanding the subtleties used in conversation, such as irony and humor. Also, while many individuals with autism have mental retardation, a person with Asperger's possesses an average to above average intelligence (Autism Society of America, 1995). Asperger's is sometimes incorrectly referred to as "high-functioning autism." The diagnostic criteria for Asperger's Disorder as set forth in the DSM-IV are presented below.

Diagnostic Criteria for Asperger's Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:
    (1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
    (2) failure to develop peer relationships appropriate to developmental level
    (3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
    (4) lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
    (1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    (2) apparently inflexible adherence to specific, nonfunctional routines or rituals
    (3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
    (4) persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single word used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder, or Schizophrenia. (APA, 1994, p. 77)

(Reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Copyright 1994 American Psychiatric Association.)


(5) Pervasive Developmental Disorder Not Otherwise Specified. Children with PDDNOS either (a) do not fully meet the criteria of symptoms clinicians use to diagnose any of the four specific types of PDD above, and/or (b) do not have the degree of impairment described in any of the above four PDD specific types.

According to the DSM-IV, this category should be used "when there is a severe and pervasive impairment in the development of social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder" (American Psychiatric Association, 1994, pp. 77-78).

Wednesday, April 02, 2008

On World Autism Awareness Day Have Hope But Do Not Sugar Coat Autism Realities



History is being made today; the first World Autism Awareness Day as declared by the United Nations General Assembly. Qatar led the international effort to being about this result and that effort should not be overlooked or diminished. In North America and Europe there is a movement which has tried to romanticize and glorify "autism"and which actively attempts to suppress discussion of the harsher realities faced by many autistic people. Governments, particularly the Canadian government of Prime Minister Stephen Harper, have been quick to point to the views of people in this movement as an indication of lack of agreement on what should be done to help persons with autism thus justifying the Harper's government refusal to take serious steps to address Canada's autism crisis.

Almost everything about autism is controversial in the extreme. Debates roar on over the causes of autism. Even Applied Behavior Analysis, ABA, a well documented, well researched autism intervention is criticized relentlessly, often by people who have had no experience with ABA. Some of these people know nothing more about ABA beyond the extremist rhetoric of anti-ABA activisits who themselves generally have no experience and little real knowledge of ABA. The ABA critics ignore the millions of parents, thousands of autism experts, hundreds of studies and numerous professional reviews by responsible expert agencies which have endorsed ABA for decades as the educational and health intervention of choice for autism, an intervention documented by years of study as effective at making real gains in intellect, behavior, communication and socialization skills for autistic children

Even the mention of the existence of severely autistic or low functioning autistic persons offends some people. Within the world of autism there is an ideological group sometimes self referenced as Neurodiversity, which perverts logic and common sense and asserts that Autism Disorder is not in fact a disorder, that somehow it is a good thing that some children develop the limited communication, social and intellectual and behavioral characteristics that lead to diagnoses of Autism Disorder. Mention the reality, the FACT, that some autistic people hurt themselves very seriously by self aggression or that they lack understanding of the world such that they require 24/7 supervision and care, in some cases for the duration of their lives and the Neurodiversity ideologues react with sarcasm, hostility and anger.

While they are quick to search history and speculate that every known genius in history was an "Aspie" or an "Autie" the Neurodiversity ideologues do not want parents of children diagnosed with actual Autism Disorder with profound developmental delays to talk about their children's existence and challenges; challenges not shared by the ND cult. Mere mention of 14-year-old Kristi Jansen the severely autistic young lady featured in one of the Vancouver Sun's excellent Faces of Autism series is enough to set off anger and hostility on autism discussion forums like Autism Speaks now dominated by Neurodiversity advocates.

Accepting autism should not mean the kind of autism acceptance which views autism as a joy. Autism is a disorder. The people diagnosed with Autism Disorder who have limited communication and social skills, serious behavioral challenges and in some cases intellectual deficits, should not be ignored in shame and denial. Their realities too must be accepted. There is no "joy" in knowing that your child, diagnosed with Autism Disorder and profound developmental delays, will never know a life of independence, that he will be cared for by strangers long after you are dead.

My son Conor, diagnosed 10 years ago with PDD-NOS, subsequently changed to Autism Disorder with profound developmental delays. lifts my spirits every day and makes my experience of life richer and more meaningful. Although I do not find joy in my son's Autism Disorder I take great joy and find great happiness in him. I accept him and the fact that he has an Autism Disorder but instead of surrendering to the seductive logic of the Neurodiversity movement, instead of embracing his autism as a "good thing" I try to help him overcome the deficits which mark his Autism Disorder. That to me is true autism awareness and true autism acceptance. That to me is being a responsible parent.

Today I will be aware of Autism and I will discuss it with many people in my daily life. I will be of service to my son and other persons with autism by speaking the truth about Autism Disorder. I will tell people there is hope for improvement by intensive early ABA intervention and the incredible explosion of autism research, the Autism Knowledge Revolution know taking place, but I will not sugar coat the realities of autism disorders to make others .... or me .... feel better.

Friday, July 06, 2007

Runner's Autism - An Ever Present Autism Danger

I have never heard of "Runner's Autism" as described in this article in the Bowie-Blade news from Maryland. The article tells the story of a six year old autistic boy with a compulsion to run away. According to the article, doctor's refer to this as "Runner's Autism" which would appear to be a very informal description of a pattern observed by practicing doctors and not a recognized condition on the spectrum of Pervasive Developmental Disorders. But the danger of an autistic child running away into traffic and other dangers is a common one often present for autistic chidlren.

Many parents of autistic children, whether their children fit the "Runner's Autism" pattern of autism or not, live in constant fear of the possiblity that their child will wander into traffic with no appreciation for the danger it presents. Or be lost to the many other hazards that the world can present to a child with out an appreciation of danger.

I have commented before about a personal experience from a few years ago when, alone in charge with my son, and preoccupied with a business call, I did not notice that he had left the house. When I called 911 I learned he had crossed a busy nearby street and was safe in a local convenience store. A good samaritan had stopped his vehicle and helped him to safety inside the store where I picked him up. (The good samaritan remained until I arrived then turned and left quickly before I could thank him.) I had never experience such powerful feelings of fear and guilt before in my life. And the memory is never totally removed from my daily consciousness.

'Please help keep him safe'

By DAVID EMANUEL Staff Writer

Six-year-old Jeffrey Schwartz, who lives on Crimson Court just off Old Chapel Road, keeps trying to run away from home.

And he literally can't help it.

Schwartz has a rare form of autism that doctors call "runner's autism," meaning that, especially in children, anytime they feel they can "escape," and see an open door or window to climb out or fence to climb over, they will do just that.

His parents are extremely worried. And exhausted.

"When you see him walking down the street, you'd just think, there he goes walking to grandma's house, or something like that," said his mother Lori.

But what you don't know is that Lori and her husband Jeff are running around frantically searching for the youngster.

The Schwartzes have spent tens of thousands of dollars on such escape-prevention methods as a search and rescue dog and a 6-foot privacy fence, which Jeffrey is now trying to climb on his own.

"We watch him like hawks. He just tries to trick us now, and he's actually getting crafty, even though he doesn't mean to," said Lori. "He runs down hallways and hides in rooms and tries to disappear so he can escape."

Lori said Jeffrey gets out, it seems, every hour of every day.

"He wears us out," she said. "He runs into the woods. He gets tired. We get tired. And we get so nervous. It's just really hard in so many ways, looking after him, trying to control him. And the doctors say this is a very rare characteristic of autism."

All children with autism have different characteristics that are magnified during certain "events," she said.

"Seeing an open door, in Jeffrey's case, is like that door is calling his name," she said.

Lori said that when you first meet Jeffrey, your initial impression is that he's a beautiful, healthy little boy who's normally very, very good. (This reporter, who spent some time with Jeffrey and one of his therapists, couldn't agree more.)

"But as soon as he sees a window or a door open just a crack, he has to run toward it and try to get out. He doesn't stay still in one place for very long, and as soon as there's that opportunity to run outdoors, he will. He's very much all over the place," said Lori. "In the woods, around Samuel Ogle Middle School, at the Crescent Market."

Lori said it's often impossible to perform a simple task like washing dishes without, in a matter of seconds, her turning around and finding Jeffrey gone or in his room ripping things apart, desperately trying to get out or find a way out.

"His siblings try to help, neighbors always help, and it's not like we're not constantly watching him and keeping vigil. It's not that this is a high-maintenance or high-functioning child. He is very unaware of the dangers surrounding him," said Lori. "We are trying to do everything we can, and we don't know what else to do at this point or where to turn. And it seems that whenever we turn around, we're looking for our son." And he's clearly a danger not only to himself, but to others.

One day, worries Lori, he's just going to not run into the woods, but dart right into traffic.

This is not the outcry of a tired mother, she said. This is something far more than that.

"I don't know how or when this will stop. I feel it's very out of control," she said. "Friends and neighbors and people from church have been very helpful, working for him, picking up after him, looking after him, or looking for him. Chasing him has become a game, and when you catch him it's like he lost the game and is going to try again. He runs, he gets out, he sees the big world, he wants to be in it, and he doesn't want to be caught."

And, she added, "I don't want child services at our door, and accuse us of neglect when we've put every hour and minute of our life into this." And just about every dollar.

The family spends at least $5,000 a month for therapy, has attended workshops, visited doctors in various parts of the country, and has already spent $12,000 for the search and rescue dog. The huge fence that surrounds their yard cost thousands more.

Several interruptions in academics and socialization programs have also put him further behind, and Jeffrey has had to be "retaught" certain things.

Now, the family has made up several bumper-sticker-sized fliers (they are being distributed throughout her neighborhood and are also available at the Blade-News office at 6000 Laurel-Bowie Road).

Jeffrey is pictured in a bright yellow shirt, the color now of all of his shirts, for easy identification, and also wears an ID belt with his name and additional phone numbers around his waist.

"He is fast, determined and has no sense of danger," it says on the flier. "He does not talk or communicate well and will try to run from you. Please do not lose track of him."

Jeffrey likes gummy candy, chips and fruit drinks but can have no dairy or wheat/gluten products.

Lori again stresses that she does not want to be seen as an unfit parent who cannot keep track of her child.

And she has gotten "the looks" from people.

But she has also gotten the understanding shoulder from doctors, friends - and especially others she has met who have experienced this same terrifying scenario, over and over again.

"I love my child," said a faithful yet despondent Lori. "And I have faith, and I know people will do the right thing out there."


http://www.bowieblade.com/vault/cgi-bin/bowie/view/2007B/07/05-28.HTM

Sunday, June 17, 2007

Autism & The Neurodiversity Message - We Know What is Best for Your Autistic Children - Do Not Try to Treat or Cure Your Children

There are a number of disputes which plague the world of autism. Although none is as curious as the anti-autism cure movement known as "neurodiversity". Composed largely of persons with high functioning autism and Asperger's it is bolstered also by some parents of autistic children who subscribe to the view that by trying to cure their child's autism they are trying to destroy their child's essential identity. These parents, and some professionals, also repeat the Neurodiversity mantra that parents seeking to cure their children of autism or even to treat its more egregious symptoms actually hate their children. These parents and professionals then have no qualms about spreading their hostile message and accusing other parents who have not succumbed to the Neurodiversity message of hating their own children.

The current US court proceedings highlight the beliefs of some parents that their child's autism was caused by thimerosal, a mercury containing organic compound used as a preservative in some vaccines. Even the dates at which thimerosal ceased being used widely in vaccine preservatives, if at all. But nothing can compare to the circular, and at times bizarre, logic of the Neurodiversity advocates and their attacks on parents seeking to help their own children.

The fundamental premise of Neurodiversity is itself a sound premise, one with which I completely concur and one with which I am sure all parents of autistic children are in agreement - acceptance. Acceptance of autistic persons as human beings deserving of dignity, respect and inclusion in all aspects of society. After that fundamental premise however the Neurodiversity movement falls off the rails.

Not content with acceptance of autistic PERSONS, not content with acceptance of the fact that persons are autistic, the Neurodiversity movement tells us, parents included, that we must stop trying to treat and cure our autistic children; we must embrace our children's autism as a wonderful natural variation of human existence, one that, in some ways at least is even superior to other such variations. Indeed we must find and accept the joy of autism.

To reach this stage of Neurodiverse enlightenment parents are told, amongst other things, that they do not know what is best for their own children, they can not know what is best, unless of course, they too are autistic. Far better that they listen to complete strangers who have never met their children, never cleaned up after their children, never fed their children, never laughed with or tickled their children, never sang with their children, never fixed windows broken with their children's hands, never helped their children to eat as they literally starved themselves to near death states, never helped their children calm down while banging their heads against walls or biting their hands or wrists. Better to listen to strangers who will not be there for their children when they need residential and institutional care as adults. Stop presuming that mom and dad knows best. The experiences and observations of parents who live with, care for and interact with their autistic children on a 24/7 basis from birth onward should be given no weight. Parents know naught. Only the internet strangers who are, or claim to be, autistic can truly speak for all autistic persons including the children whose parents seek to help, treat and cure them. Only by embracing the wisdom of these strangers can parents reach Neurodiverse enlightenment.

When parents point out that these Neurodiverse sages do not share the same severity of autism as their children and can not possibly understand their children's challenges the Neurodiverse are offended. They are offended that parents would presume to divide autistic persons by the degree of severity of their autism. This is where the Neurodiversity logic breaks down totally and they reach and grab for any theory or explanation to maintain their self promoted presumption of autism expertise. Although the Neurodiverse embrace the label of autistic, or autism, as a descriptive term they reject its origins as a medical diagnosis, one of a spectrum of disorders of varying degrees of severity and different characteristics.

Autism is a term used loosely to describe a number of disorders now classified on Axis I of the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV), and known as the Pervasive Developmental Disorders. Autism Disorder is a PDD. In the 4th edition a number of diagnoses were added to the PDD's - Rett's Disorder, Childhood Disintegrative Disorder and Asperger's Disorder. Asperger's Disorder is the diagnosis which will likely be made for persons who have traditionally been labeled as having "High Functioning Autism." It is the appropriate diagnosis for individuals who have evidence of many Autistic-like symptoms but for whom there are no language impairments. - Meredyth Goldberg Edelson, Ph.D. Department of Psychology,
Willamette University. As Dr. Edelson also points out in Autism-Related Disorders in DSM-IV there are many variants in autism disorders. The reasons for tightening the criteria for Autism and for adding Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder to DSM-IV is to recognize that Autism is a disorder with many possible symptom variants. Because of this, individuals diagnosed with Autism in the past have been heterogeneous. . Notwithstanding that the Neurodiversity movement of some high functioning autistic persons, some sympathetic parents and professionals embraces the diagnostic label of autism they reject the other elements of diagnosis, the heterogeneity that gives rise to different diagnoses based on severity and nature of the autism or pervasive developmental disorders.

While rejecting the views of parents, who can not believe that these internet essay writers and interveners in court cases and political proceedings have much in common with their children, and while rejecting the professional classification which gives rise to the diagnosis of Autism which they embrace, the ND polemicists also ignore the writings of their own academic icons, particularly Montreal psychiatric researcher Dr. Laurent Mottron. Dr. Mottron has himself acted as an advocate for the Neurodiversity movement, filing an affidavit in support of Michelle Dawson who intervened in the famous Auton proceedings before the Supreme Court of Canada and appearing himself as an expert witness before the recent Canadian Senate proceedings examining funding of autism treatment in Canada. Dr. Mottron, like his colleague Michelle Dawson, opposes Applied Behavior Analysis as a treatment for autism.

The good Dr. Mottron, notwithstanding his entrenched opposition to ABA as a treatment for autism, does not appear to have any serious expertise as a clinician and appears to have a very narrow range as an autism researcher, focussing his several studies and reports per year almost entirely on subjects which his reports themselves invariably describe as HFA (High Function Autistics), Asperger's, and even Autistic Savants. Thus while the Neurodiversity movement has appointed Dr. Mottron as one of its heroes it seems to have overlooked the fact that he himself uses a descriptive system which recognizes different levels of severity, different symptoms, of the various and heterogenous PDD or Autism Spectrum Disorders. Dr. Mottron's high functioning autism studies also contribute to the efforts of such as Morton Ann Gernsbacher and their mutual colleague Michelle Dawson. It does not appear that any of this illustrious trio will soon be rushing out to study, or heaven forbid actually work with, the lower functioning autistic persons residing in institutional care and unable to communicate in any meaningful way with other people.

At the end of the day the fundamental contradiction of the Neurodiversity movement is that it is a movement of people who organize based on a spectrum of neurological disorders, a spectrum divided by deficits of differing types and severity who then argue that their disorder are not disorders at all just different orders. And then some argue that they are the only truly authentic voices for these disorders (which are not disorders) even though their deficits are different than those of the children whose parents are trying to help them through treatment or cure.

And while they are quick to complain about the insensitivity of language used to describe the serious challenges faced by more severely autistic persons they are equally quick to use pejoratives such as "curebies" to describe concerned and caring parents. The neurodiversity crowd even stooped to accusing the parents in the touching video "Autism Every Day" of having faked or staged the video. I was not in the "Autism Every Day" video. But my son who I love dearly presents, along with great joy, incredibly challenging deficits which threaten his own safety and that of his brother, mother and even me, as when driving I am grabbed from behind by a suddenly distraught autistic son.

The Neurodiversity movement is at best silly and at worst insulting, abusive and dangerously misleading. I, for one, will never drink the Neurodiversity Kool-Aid. I will leave that to those who believe that, in order to find joy in their autistic child, they must find joy in his or her autism, a mistake I will never make.