Sunday, May 17, 2009

Ari's Omission : Autistic Disorder and Aspergers Disorder are Critically Different Disorders

Why do some persons with Aspergers Disorder insist on the right to speak for persons with Autistic Disorder, to tell the world that persons with Autistic Disorder do not want to be cured, and why does the media let them get away with it?

Newsweek has now become the latest stop for Ari Ne'eman, a very intelligent, highly articulate gentleman with Aspergers who persistently purports to speak on behalf of all people with "autism". Ne'eman, with Aspergers Disorder, expresses his opinion, as a person with "autism", about what is good for children with Autistic Disorder a related but distinct Disorder in the Pervasive Developmental Disorder category of the DSM-IV. One of his central themes which he delivers on behalf of persons with autism is "we don't want to be cured". Good for the intelligent, articulate Ari Ne'eman but does he have the right to make that claim on behalf of persons with Autistic Disorder with communication deficits and in many cases cognitive impairment people, including children with whom he has little in common?

Many children and adults with Autistic Disorder suffer from cognitive and communication deficits which seriously impair their ability to understand and function in the real world. Those with Aspergers Disorder like Ari Ne'eman do not have cognitive impairment or serious language impairment ... by definition.

DSM-IV Diagnostic Criteria for Aspergers Disorder and Autistic Disorder

The DSM (Diagnostic and Statistical Manual, American Psychiatric Association) diagnosis criteria for Aspergers Disorder expressly exclude impairments in cognitive AND communication development:

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) 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.

The reality for many people with Autistic Disorder is much different when it comes to delays, some permanent, in cognitive development and language:

(B) qualitative impairments in communication as manifested by at least one of the following:

1. 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)

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

3. stereotyped and repetitive use of language or idiosyncratic language

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level


The DSM does not expressly state that cognitive development is a diagnostic criteria for autistic disorder but it is clearly implicit in the list of developmental deficits that cognitive deficits or mental retardation would be associated with these serious deficits in many cases.

ICD-10 Diagnostic Criteria for Aspergers Disorder and Autistic Disorder

The European equivalent of the DSM, the ICD-10 Classification of Mental and Behavioural Disorders states this obvious point expressly in distinguishing between Autistic Disorder and Aspergers Syndrome. Under the ICD-10 an Asperger's Syndrome diagnosis expressly excludes

Autistic Disorder

...

In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation. Most individuals with autism lack spontaneity, initiative, and creativity in the organization of their leisure time and have difficulty applying conceptualizations in decision-making in work (even when the tasks themselves are well within their capacity). The specific manifestation of deficits characteristic of autism change as the children grow older, but the deficits continue into and through adult life with a broadly similar pattern of problems in socialization, communication, and interest patterns. Developmental abnormalities must have been present in the first 3 years for the diagnosis to be made, but the syndrome can be diagnosed in all age groups.

All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.

Includes:
* autistic disorder
* infantile autism
* infantile psychosis
* Kanner's syndrome


Asperger's Syndrome

A disorder of uncertain nosological validity, characterized by the same kind of qualitative abnormalities of reciprocal social interaction that typify autism, together with a restricted, stereotyped, repetitive repertoire of interests and activities. The disorder differs from autism primarily in that there is no general delay or retardation in language or in cognitive development. Most individuals are of normal general intelligence but it is common for them to be markedly clumsy; the condition occurs predominately in boys (in a ratio of about eight boys to one girl). It seems highly likely that at least some cases represent mild varieties of autism, but it is uncertain whether or not that is so for all. There is a strong tendency for the abnormalities to persist into adolescence and adult life and it seems that they represent individual characteristics that are not greatly affected by environmental influences. Psychotic episodes occasionally occur in early adult life.

Diagnostic Guidelines

Diagnosis is based on the combination of a lack of any clinically significant general delay in language or cognitive development plus, as with autism, the presence of qualitative deficiencies in reciprocal social interaction and restricted, repetitive, stereotyped patterns of behaviour, interests, and activities. There may or may not be problems in communication similar to those associated with autism, but significant language retardation would rule out the diagnosis.

Includes:

* autistic psychopathy
* schizoid disorder of childhood

In both the DSM and the ICD manuals Aspergers and Autistic disorders are distinct with Aspergers expressly excluding general delay in cognitive and communication development. These distinctions should be made clearer in the DSM V revision and separated from the same "spectrum" that has caused so much misunderstanding.

Ari Ne'eman a very intelligent, highly articulate gentleman with Asperger's Disorder has every right to speak on his own behalf and on behalf of those persons with Aspergers who agree with his views. Mr. Ne'eman has no right to suggest that persons with Aspergers and persons with Autistic Disorder are fundamentally similar. They differ by definition in the critically important areas of cognitive and language development. Ari Ne'eman does not have these deficits and can not begin to appreciate the challenges that having those deficits brings to the lives of persons, like my son Conor, who has an Autistic Disorder diagnosis and is assessed with profound developmental delays.

Aspergers includes social impairment. Autistic Disorder includes social impairment but also includes substantial delays and deficits in language impairment and, in many cases, cognitive development. It is hard to imagine any two areas, communication and cognitive functioning, any more important to daily life. And yet, despite these two critically important differences they are not separated clearly enough as disorders in the DSM. The result is widespread public confusion and misguided advocacy.

The impending DSM-V should do everyone a favor and separate more clearly these two disorders with fundamentally different diagnostic criteria in areas central to any human existence - communication and intelligence.




Bookmark and Share

14 comments:

Marius Filip said...

Well, yes and no. Ari Ne'eman has never said he speaks in the name of people with Asperger's.

I believe by the name "autistic" he means people in the spectrum.

But the fact is, Ari Ne'eman has no right to speak in the name of Asperger's people either.

Children with Asperger's are represented by their parents. When becoming adults, they are able to make choices.

Then, they may or may not choose to feel represented by Ari Ne'eman, by ASAN or any other self-advocacy organization.

farmwifetwo said...

I wanted to post pretty much the same thing on LB/RB but it appears I've joined the "you're not welcome" club.

My FIL died last week and I'll use Thurs funeral as my example.

Eldest son - NLD and Aspies.... Seeing casket - complete devestation - he was Grandpa's boy. To deal with such devestation non-stop totally un-PC comments about death - the NLD. Able to sit with the family, able to go and fetch and return younger bro to his Grandparents during the children's story (Love you forever - Munch). Able to go home with his best friend who's parents took her out of school for the luncheon. Able to do his science proj independantly while he was at her house and have a water fight. Able to return to his Grandparents and play Uno with his Cousin and beat her game after game and have a good time (I think he counts cards actually and doesn't know it).

Severe autism - having to sit with Grandparents (my Parents came just to look after him for us) at the back of the room. Well behaved during the story, while bossed by older bro. No understanding that his Grandfather is gone but diahhrea b/c he understands something's wrong - routine changed 100% during the week. Stayed with Grandparents during luncheon. No friends to meet him. Went home with Grandparents for the weekend. Mother happy b/c with the house full of family after funeral I would never have been able to keep track of him - bolter.

Having one of each.... I can tell you, they are NOT the same... not even close. If I could tomorrow... I'd turn my severe PDD one into NLD or Asperger's without hesitation. Social skills, dealing with sensory issues, spatial issues, self help skills, un-PC talk at inappropriate times can all be taught.... But to be without language - except mands/demands, to have trouble toiletting, to have no friends, to dial 911 twice in the last month b/c you learned the skill but not the "effect" of using that skill, to walk out of my MIL's lumberyard 2 weeks ago in the 30sec I turned my back and luckily my BIL saw him running down the road....

Aspie/NLD like his older bro and Ari... I wish...

S.

Autism Reality NB said...

Marius

I agree that Ne'eman purports to speak for all people on the "spectrum" meaning anyone with a Pervasive Developmental Disorder.

I also agree that Mr Ne'eman has no right to speak on behalf of other people's children regardless of the disorder.

And I agree that there are many adults with Autistic Disorder and Aspergers who do not share Mr Ne'eman's views about "autism", treatments, and cure.

My focus in this comment was simply on the absurdity of this gentleman having ANY basis to speak about a Disorder he does not have which he attempts to do with his generic references to autism, which obviously includes actual Autistic Disorder.

Autism_IS_treatable said...

Harold,

As I have mentioned before, I have an Asperger's Disorder diagnosis; therefore, I am an Autistic person.

Below is the reason I use "Autistic" instead of Asperger's Disorder. First and foremost, I do not meet all the criteria separating Asperger's Disorder from Autistic Disorder. Please see below.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

Katie says: I have had significant language (speech delays) during childhood. I did not start speaking in complete sentences until sometime in elementary school. (I do not remember my exact age.) However, I am still not verbally articulate, and social speech and interactions remain to be a huge problem. If I could speak as well as my friend Ari Ne'eman, I would not be considering a method of alternative communication.

(V) 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.

Katie says: I think my strong cognitive abilities are well evidenced here. However, I have always had and still have delays in age-appropriate self-help skills, adaptive behaviour - in daily living and social interactions. You are correct to assume I have a good curiousity about everything. Like Ari, I am inquisitive, open-minded, and love to learn about almost everything.

The reality for many people with Autistic Disorder is much different when it comes to delays, some permanent, in cognitive development and language:

Katie says: What is "the reality for many people with Autistic Disorder?"

What is the reality for many people with Asperger's Disorder?

(B) qualitative impairments in communication as manifested by at least one of the following:

1. 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)

Katie says: I have had both a delay and total lack of communication in spoken language. My ability to verbalize my needs and desires is still very inconsistent.

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

Katie says: 100 percent applicable.

3. stereotyped and repetitive use of language or idiosyncratic language

Katie says: 100 percent applicable.

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Katie says: Actually, I have a good imagination. I really enjoy writing poetry, about my experiences, and other things.

In conclusion, I completely agree with you regarding the two most important things for life: intelligence (cognitive ability) and communication. However, as of now, I only have the intelligence (cognitive abilities) part.

- Katie

Stephanie Lynn Keil said...

Katie,

I assume you weren't diagnosed with AS until you were older. Didn't anyone in your family notice you had such severe problems? How were you able to function so well if you had such severe problems you described? I hope you're not going to use the intelligence card because that one doesn't work with me.

I have Autistic Disorder without mental retardation and am able to speak but not very well. I am classically autistic in every way except that I have a high IQ, which is what gives me my good verbal abilities.

I spent about seven years in hospitals and institutions. I've had problems throughout my entire life and they were severe so they didn't go unnoticed. Improperly treated and improperly diagnosed, perhaps, but definitely not unnoticed.

I just don't understand how people can say they had such problems in childhood but they went completely unnoticed. I see this happen a lot with people with an AS diagnosis.

Stephanie Lynn Keil said...

Katie,

I was also considered to be below average intelligence as a child, mildly retarded. This was assumed because I rarely spoke.

Foresam said...

Harold,
Great definition of the differences. You should send this entry to Dan Marino to show him how he has been conned by Ne'eman. He might have friends with the Redskins or Ravens who would give Ne'eman a lesson about bullying autistic children.

Autism_IS_treatable said...

Stephanie,

I was misdiagnosed with ADHD. (I was diagnosed with ADHD when I was four years old.

I was diagnosed with PDD-NOS in fifth grade. (My PDD-NOS diagnosis classified me under "AU" for special education.) However, my diagnosis was later changed to Asperger's Disorder in high school. I assume because of improvement in verbal communication skills (still not age-appropriate though).

I'm not sure what I wrote that makes you believe I "function well." I have never said my problems did not get noticed. I'm not sure why you are accusing me. Many people with Asperger's Disorder have similar communication challenges compared to people with Autistic Disorder.

In preschool, I had physically aggressive behaviour, did not have age-appropriate communication skills (had very limited speech/language), did not follow directions, had disruptive and repetitive behaviour such as organizing children's coats and not joining in structured activities. I received speeh/language, occupational, and physical therapy for my deficits.

I do not know why I was not diagnosed on the Autism Spectrum as a child.

However, after I was diagnosed with ADHD, I was placed on Ritalin, and my doses were increased due to apparent "progress." (I was improperly diagnosed and improperly medicated.)

- Katie

Stephanie Lynn Keil said...

Katie,

I say this because I see people with a diagnosis of AS pretend to be more severe than they are so that they can claim they can speak for people with more severe autism.

I am also curios about how autism and Asperger's are different because they ARE different. I am nothing like people with AS yet many AS people try to say that people with HFA are like them. At least this HFA isn't.

But how can autism be misdiagnosed as ADHD? This I don't really understand. Ari was also originally misdiagnosed with ADHD and he is incredibly high functioning. ADHD and autism are not similar. ADHD and Asperger's I can understand, but not classic autism.

You would've probably been diagnosed as AS as a child; it's overlooked in females and it probably wasn't well known at your age. I notice that people with classic autism are more likely to engage in self-injury and have much more repitive behaviors, like myself and engage in more obsessive behaviors (I spent up to 16 hours a day pacing around my room.)

Organizing children's coats is not really autistic; I've noticed that people with Asperger's organize things while people with autism do repitive behaviors, such as flipping lightswitches (like I did); just a difference I have noticed.

And the fact that you were physically agressive tells me that you were aware that other people existed. People with autism are usually unaware of the existence of other people, like I was. I was unaware of other people, was completely aloof and in my own world. Rarely interacted with anyone, never any aggressive behavior towards anyone else.

Also, people with AS are much more aware of themselves than people with autism. I still reverse my pronouns, although I am much better than I used to be.

I think people with autism have much more severe mindblindness than people with AS, which is why they rarely communicate.

And I assume no one considered you to be of low intelligence like they did with me. I didn't really see a need to communicate so I was just thought to be retarded. I'm not. Just severely autistic.

I don't think that people with Asperger's have similar communication problems to people with autism at all. My cousin is severely autstic and cannot communciat AT ALL, can't even write his own name. And I'm sure you can communicate much better than I can.

I didn't communicate my thoughts to anyone until I was 18/19; that's when everyone figured out that I was actually intelligent, when I had my "breakthrough." Certain realizations...

Roger Kulp said...

Stephanie,

The more I learn about you,especially from your comments in this blog,the more I wonder if your diagnosis ought to be atypical autism,which is what mine is.

Elizabeth said...

Thank you for this very clear and informative post. I am new to your blog and look forward to reading more!

Stephanie Lynn Keil said...

Ros Blackburn

A good read about severe autism and high IQ:

http://www.abc.net.au/rn/science/ss/stories/s223731.htm

Stephanie Lynn Keil said...

Roger,

I've always considered "atypical autism" to just be classic autism with a high IQ, so yes, I suppose that is correct.

beau99 said...

I agree with Marius on this one.

I, like Ari, have Aspergers, however, he certainly does not speak for myself. I do that myself just fine. Honestly, every time I come across him on websites, I just cringe. He comes across to me as an arrogant person.

NOT the type of person I would want to reprsent me. And if I had a kid that was on the spectrum, I'd want him far away.