Autism and Intellectual Disability: More Denial, More Stigma, This Time In Alabama

In Children with Asperger's could lose diagnostic identity we see still more evidence, this time in Alabama,  of the stigma attached to the fact that the vast majority of persons with Autistic Disorder, unlike those with Aspergers Disorder diagnoses,  also have intellectual disabilities or cognitive impairments. Once again the story tells of concerns held by some that those with Aspergers will be stigmatized by being lumped in with those with Autistic Disorder in the DSM-5  New Autism Spectrum Disorder. In expressing these concerns the subjects interviewed contribute to the stigmatization of those with Intellectual Disability generally and specifically to the many persons with Autistic Disorder and Intellectual Disability:

"It's difficult to say where Asperger's ends and autism begins," Mulvihill said.


That difficulty - and the stigma attached to autism - is partly why some adults with Asperger's are not happy about the proposed change in the DSM, Crane said. While those individuals on the high-functioning end of the autism spectrum might show only slight symptoms, those on the other end of the spectrum are profoundly affected by the disorder.


Being classified as autistic can make it even more difficult for high-functioning individuals to develop relationships with their peers.


Crane said despite their various challenges, autistic children are highly intelligent.


"These kids are definitely the scientists of tomorrow," said Crane, who established the Riley Center after her son was diagnosed with autism. "They're brilliant. That's why early intervention is so important."

The comments by Crane of the Riley Center are a perfect example of the denial that is so prevalent in any public discussion of Autistic Disorder. The main difference between Autistic Disorder and Aspergers is in the area of intellectual disability.  By definition in the current version of the DSM-IV a person with "autism" criteria AND Intellectual Disability will be excluded from an Asperger's Disorder (DSM-IV, Diagnostic Criteria for Asperger's Disorder  299.80)  diagnosis (as set out on the CDC web site):

"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.

I have written frequently on the refusal of so many parents, professionals and persons with very high functioning autism disorders to acknowedge the high rates of intellectual disability in persons diagnosed with Autistic Disorder as that disorder is currently diagnosed in the DSM-IV.  The 2006 Canadian Psychological  Association brief to a Canadian Senate committee examining autism stated that:

"Symptoms and Impairments:

• 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."

The CPA figures with respect to Autism (Autistic Disorder) appear consistent with the CDC figures with respect to the entire autism spectrum:

"Data show a similar proportion of children with an ASD also had signs of intellectual disability than in the past, averaging 44% in 2004 and 41% in 2006."

The 41-44% figure for the entire spectrum includes those with Aspergers diagnoses who, by definition, do not have intellectual disabilities or cognitive impairment.  They are also approximate the numbers provided set out in the ICD-10 for persons with respect to Childhood Autism F84.0:

"F84.0 Childhood Autism

A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 
...
All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases."(Bold highlighting added - HLD) 

These figures contradict the denial of intellectual disability inherent in Crane's generalizations that "autistic children are highly intelligent", "these children are definitely the scientists of tomorrow"and "they're brilliant".  Such statements deny the reality of the close association between Autistic Disorder and intellectual disability and are clearly reflections of the stigma attached ... not to autism per se ... but to intellectual disability.  It is the connection between autism and intellectual disability that creates concern for many with Asperger's Disorder about merging Asperger's and autism in the DSM-5.  It is that frequently expressed and highly publicized concern that contributes to the stigmatization of those many persons with Autistic Disorder and Intellectual Disabilities. 

The US National Institute of  Mental Health states with respect to Autism Spectrum Disorders in the section  titled Problems That May Accompany ASD:

"Mental retardation. Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests."

What is interesting about the NIMH comment is that it ties mental impairment to language disabilities, another area that distinguishes Autistic Disorder from Asperger's Disorder in the DSM-IV.  It is a relationship that is glossed over by those who wish to disavow the obvious relationship between autism and intellectual disability.  By contrast an Italian study, published in the Journal of Intellectual Disability Research has expressly underlined the relationship between autism and intellectual disability:

Abstract

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.

METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID. (bold highlighting added -HLD)

The denial of the Intellectual Disability connection to autism, as in Autistic Disorder, will be completed in the DSM-5 and will result in further stigmatization of those with Autism and Intellectual Disability.  It will also contribute to the trend to conduct "autism" research excluding persons with autism and intellectual disability the "vast majority" of those with autism as it is currently defined. The study reports in these cases tend to generalize their findings to the entire autism spectrum of disorders despite the exclusion of intellectually disabled autistic subjects.  The informed, mature  and enlightened approach of studying the connection between autism and intellectual disability suggested by the authors of the Italian study will never see the light of day.

The intellectual disabilities of so many with autism, and the very serious challenges they face,  will simply be ignored for fear of stigmatization. The Alabama example is only one of many examples of such stigmatization. 

There will be more.

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Autism Disorders and Intellectual Disability: Sources #1

The term comorbid is used to deny that there is any relationship between Autism Disorders, particularly Autistic Disorder and Intellectual Disability. The Neurodiversity ideological movement disdains any mention of Intellectual Disability in connection with "Autism" which is romanticized and its reality as a mental disorder downplayed. "Autism" research is routinely conducted using participants with Aspergers and HFA, those with Autistic Disorder and Intellectual Disability are excluded. 

The DSM-5 will continue the process of separating Intellectual Disability  from Autistic Disorder without any apparent regard  as to whether an imporant  element of autism disorders ... the relationship between ID and Autistic Disorder will be ignored to the possible long term detriment to persons with Autistic Disorder and ID and to  our understanding of "autism" and Intellectual Disabilities.  Following are some starting sources for consideration of this important  issue. 

  

Autism and intellectual disability: a study of prevalence on a sample of the Italian population.

La Malfa G, Lassi S, Bertelli M, Salvini R, Placidi GF.

Psychiatry Unit, Department of Neurological and Psychiatric Sciences, University of Florence, Hospital of Careggi, Florence, Italy. gplamalfa@videosoft.it

Abstract

BACKGROUND: In 1994, the American Association on Mental Retardation with the DSM-IV has come to a final definition of pervasive developmental disorders (PDD), in agreement with the ICD-10. Prevalence of PDD in the general population is 0.1-0.15% according to the DSM-IV. PDD are more frequent in people with severe intellectual disability (ID). There is a strict relationship between ID and autism: 40% of people with ID also present a PDD, on the other hand, nearly 70% of people with PDD also have ID. We believe that in Italy PDD are underestimated because there is no agreement about the classification system and diagnostic instruments.

METHOD: Our aim is to assess the prevalence of PDD in the Italian population with ID. The Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS) seems to be a very good instrument for classifying and diagnosing PDD.

RESULTS: The application of the PDD-MRS and a clinical review of every individual case on a sample of 166 Italian people with ID raised the prevalence of PDD in this population from 7.8% to 39.2%.

CONCLUSIONS: The study confirms the relationship between ID and autism and suggests a new approach in the study of ID in order to elaborate a new integrated model for people with ID.

Canadian Psychological Association Autism Brief to the Standing Senate Committee on Social Affairs, Science and Technology November 9, 2006

Definition: Autism is a pervasive developmental disorder, first identified by Kanner in 1943. Decades later, Autism came to be viewed as the more severe of the Autism Spectrum Disorders (ASD) which also include Asperger’s Disorder. ASD is a heterogeneous disorder that includes a range of developmental impairments in the areas of social skills, verbal and non-verbal communication as well as restricted or repetitive interests or behaviours.

Symptoms and Impairments:

• 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.

CDC Medical Epidemiologist Dr. Marshalynn Yeargin-Allsopp - CMAJ Interview

"But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the CDC. For example, it now includes Asperger syndrome, where the sufferer is socially impaired, but experiences typical language development.

Another difference between past and present autism diagnosis involves the presence of intellectual disabilities, adds Yeargin-Allsopp. During the 1960s and 1970s, the vast majority of those diagnosed with autism had an intellectual disability but today, only about 40% have one."

[Note: Dr. Yeargin-Allsopp's figure of "about 40% with an ID is for the entire Autism Spectrum and is lowered because of the inclusion of Aspergers which, as a diagnosis, excludes ID]

Department of Health & Human Services - Center for Disease Control Counting Autism

CDC’s most recent data show that between one in 80 and one in 240 children with an average of one in 110 have an ASD. This is a prevalence of about one percent of children. These results reflect data collected by CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network in multiple communities throughout the U.S. in 2006. 


Estimates are based on health and education records from participating communities, which includes eight percent of the U.S. population of eight year olds. All children in the studies were eight years old because previous research has shown that most children with an ASD have been identified by this age for services.

...

Cognitive Functioning (from the pdf version)

2004
 
From 37.9% (Arizona) to 63% (Alabama) (overall average: 43.8 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test results on intellectual ability for at least 75% of the children identified).

2006
 
From 29.3% (Colorado) to 51.2% (South Carolina) (overall average: 41.0 %) of the children identified with an ASD also had an intellectual disability (an IQ ≤70, at the sites that had test reults on intellectual ability for at least 75% of the children identified)

The ICD-10 Classification of Mental and Behavioural DisordersWorld Health Organization, Geneva, 1992

F84.0 Childhood Autism


A pervasive developmental disorder defined by the presence of abnormal and/or impaired development that is manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The disorder occurs in boys three to four times more often than in girls. 


...


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


F84.1 Atypical Autism

A pervasive developmental disorder that differs from autism in terms either of age of onset or of failure to fulfil all three sets of diagnostic criteria. Thus, abnormal and/or impaired development becomes manifest for the first time only after age 3 years; and/or there are insufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restrictive, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language. Atypical autism thus constitutes a meaningfully separate condition from autism.

Includes:
* atypical childhood psychosis
* mental retardation with autistic features

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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.

autism

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