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).

9 comments:

Maddy said...

I think I detect an air of cynicism here - tut, tut!

Maybe the main difference is that as outside observers, we just can't tell and don't know.

It's a bit like when someone rolls up in a wheel chair at a restaurant. At some point they leave their wheel chair and walk to the restroom. That person's ability to walk may vary day to day and time to time in different circumstances, but they still need the wheel chair to be there.
Best wishes

Autism Reality NB said...

maddy I think you miss the point and you mistake realism for cynicism.

Your point that "as outside observers, we just can't tell and don't know." is interesting. A high functioning, highly intelligent, person attending college with a girl friend and or boy friend is an observer and does not share my son's Autistic Disorder with profound developmental delays and the challenges they present. That person as an observer just can't tell and doesn't know whether my son would want to be cured or treated for his challenges and deficits. When I see my son injure himself in frustration though I think I can tell as his father who actually cares for him.

Best wishes.

concerned heart said...

You are right on!!!!!!
Your title say it all. This needed to be clearly stated.

THANK YOU.

Steve D said...

What about a child like mine, Harold? He was diagnosed with severe autism at age 38 months by the top diagnostic department in Southern California. At age 49 months he was reassessed at the same department, and reaffirmed as severely autistic.
At that point (age 4) he had a few single words, strictly echolalic.

Now he is age 6, is "functioning" successfully in a mainstream classroom, and is blowing people away with his intelligence in the area of reading. He is extremely different from his same-age peers, but does not lack desire for friendships. His self-injurious behaviors, which used to involve head-banging, now are reduced to chewing his fingertips.

So you tell me - what should his Dx be? Since he clearly was, by all clinical measurements - "low functioning" but now would not be considered to be - what is he?

2 months ago, we (parents) filled out the SIB-r (Scales of Independent Behavior) and so did the educational staff. Our ratings resulted in him falling in the 0.06% for age-appropriate independence behaviors, the school's fell at 0.04%.
So what is he? HFA or LFA or PDD-nos or what?

I hope you consider this comment to be adding to the discussion, since that is the parameter that must be met in order for you to post a comment.

Autism Reality NB said...

No Steve D you have added very little to the discussion.

Perhaps your son was misdiagnosed. I can't say. Nor can I say why your son no longer has the symptoms ... which you say he once had. Nor can I confirm your accounting of his life story. But you knew these things before you posted here with your son's story.

What I can say is that your son's situation - as you describe it - does not represent the realities for the many children with Autistic Disorder diagnoses that do not enjoy your son's good fortunes.

What I can say is that hundreds of thousands of parents across North America are seeking to help their children live fuller lives by seeking treatment for their children.

What I can say is that those same parents are vilified by the Autism Rights Movement for seeking to help their own children.

You should be thankful that your child is doing well and not joining in those who, even though they do not share the more serious challenges faced by other autistic persons, feel free to speak on their behalf.

I hope that few people are fooled by the "Autism" Rights advocates and their anti-cure, anti-treatment ideology.

And I hope your son continues to prosper.

Andrea said...

Hi, I came across your blog on today.com. I can appreciate your frustration with the autism rights movement - they don't seem to represent your interests on the surface, but I think what they are really after is better support, services and acceptance for those with all levels of the disorder. At least some of them are after that. I have not yet understood why the two camps - Cure and Acceptance - necessarily need to be mutually exclusive. I think it's possible to not want to actively seek out a cure, to accept your child where they are developmentally and still to do what you can to help them progress, whatever that takes. My issue with the word 'cure' as it's being used today seems to be offering false hope. I have a son to raise - I don't have time for false hope.

Autism Reality NB said...

andrea

They don't represent my son's interests, on the surface or otherwise. I don't have time for fake hope either. I have advocated, successfully, with like minded parents, in my home province of New Brunswick, Canada, for pre-school autism intervention, funded by government, provided by trained personnel. We have also, successfully, fought for autism trained teacher aides and resource teachers in our schools and accommodations in the learning environments of autistic children.

In addition I have obtained therapy directly for my son, Conor and I spend a great deal of personal time each and every day with my sons. If you want to see how Conor has "turned out" you can check the many pictures I have posted of my happy affectionate son on this site.

But a search for a cure is proceeding with research and that is not "fake". The high functioning autistics/Aspergers persons who don't want to "be cured" don't have to be cured, no one is trying to force them to seek a cure. THEY are trying to interfere with parents seeking to help their own, often more severely disabled children.

I wish you and your son the very best.

jonathan said...

To Steve D: I too was severely autistic at age 3 and I had a similar partial recovery to your son where I became much more mildly autistic, but my problems are still there, and they are bad but mild compared to most on the spectrum. I am 52 never had a girlfriend and it was so hard for me to hold down a job I had to retire at a young age. I hope your son does well, but at age 6 he is too young for you to know the true outcome or how profoundly his autism affects him, though i still hope for the best for him. Just because someone's autism is quite mild in comparison to harold's son does not mean it is a trivial matter or that they won't achieve all the things they want as an adult, I know from first hand experience, though some in the neurodiversity movement seem to want to reinvent the wheel.

To Andrea: I believe that neurodiversity gives people false hope at least as much if not moreso than a cure. It provides a tempting escape valve for those who can't deal with their own autism or their relative's autism. like Diane sawyer said this morning on good morning america, it is a way to deal with heartbreak. The ND movement claims that if only society would accept them autism would not be a problem at all, that there would in fact be no need for a cure. Many people who are either autistic and quite young themselves(teenagers or younger) will buy into these arguments. Parents of newly diagnosed children may also. I believe the false hope of neurodiversity is at least as dangerous as false hope of a cure.

KC's Blog said...

Hello. My name is Tina. I am raising my Severely Autistic son and teenage brother who is also Severely Autistic. Both boys are headbangers and non verbal.
When I go to take either boy to a therapy I feel like I am the only Mom in the room whose son and brother have no words, s.i.b.s. and who are very stimmy to the point of drawing alot of attention to themselves. When I chat with the other Moms in the therapy area about their kids and actually see their kids talking and playing, (I totally cannot see the Autism in these kids) I always leave feeling horrible. Some Mothers have even gone so far to tell me in a round about way that I should have gotten more therapies for my son. I have heard the "recovered" word til I am sick to death of hearing it.
My sons Autism and younger brothers Autism does Not vary day to day as Maddy has described.
I just feel it's impossible for people (who say they are Autistic but need little help or no help) to speak on the behalf of severely Autistic people. Their views cannot relate to our kids. They are leading totally different lives.
Your son is beautiful. Thank you for allowing me to comment here at your blog.
Tina
P.S. I have no idea if my son wants to be cured or not. I will never know because of his Autism and the severity of his Autism. I do know however that he doesn't like hurting himself and slamming his own head onto the floor full force. I do know that my brother does not like pinching himself til he bleeds.