Dr. Tom Insel's Shameful DSM Retreat

Left - Transforming Diagnosis Insel


Right - NIMH Is Not Abandoning the DSM Insel.

In Transforming Diagnosis NIMH Director Thomas Insel said that the DSM was invalid, based on an antiquated system of diagnosis and .... patients deserve better.   Then he retreated, tried to hide and claimed that people were misrepresenting the Transforming Diagnosis article, that the NIMH was just talking about research not clinical practice. Last I checked Diagnosis is a key part of a medical clinical practice. If you are talking about participants or subjects you are talking about research.  If you are talking about patients who deserve better you are talking about clinical practice.  If you say that the DSM is invalid and antiquated you are not supporting the DSM, you are blowing it up.

You can run Dr. Tom but you can't hide.  Your words, your Transforming Diagnosis article are out there in the public domain.  Patients deserve a medical diagnosis based on research.  You said it and I believe it.  I don't believe the excuses offered in your shameful retreat.

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Synaptic Disorder Instead Of Autism Spectrum Disorder?

The word "Autism" has become romanticized, occasionally glorified, in public discussions of the neurological disorder. It is literally being stripped of its meaning as a diagnostic label of a mental disorder and is being turned into a different way of thinking, a way of life, a culture. Maybe it is time to start thinking about dropping the use of the term autism in the DSM, abandon the Autism Spectrum Disorder concept and replace it with a more informative, less romanticized, less politicized  name ... Synaptic Disorder.

At its most extreme the glorification of autism spectrum disorders has seen historical talents and geniuses from Mozart to Einstein "diagnosed" long after their deaths as  having been "autistics". One of the silliest of such fantasies is the speculation that Jesus Christ was autistic. At the other end of the stigma spectrum are those aided by the American Psychiatric Association, and its dilution of the concept of autism disorders in the DSM-IV,  who want the world to believe that autism and intellectual disability are unrelated conditions that are "coincidentally" present in 75-80% of those with Autistic Disorder and between 40 and 50% of all persons with autism spectrum disorders. 

Maybe it is time to consider abandoning use of the term "autism" altogether and replace it with a new, more informative, and less politicized term .... synaptic disorder.  In his December 2009  Simons Initiative on Autism and the Brain Lecture at MIT, "Autism, What Do We Know? What Do We Need?",  Dr. Thomas Insel, Director of the National Institute of Mental Health (NIMH) acknowledged that autism is not fully explained by genetics. It is also necessary to consider environmental factors ( a point made 10 years earlier by Teresa Binstock and emphasized by many autism authorities including Dr. Irva Hertz-Picciotto).  Dr. Insel also discussed the matter of how we describe autism disorders and whether we are talking about these disorders in ways that are helpful to understanding them biologically as summarized on the MIT World review of his lecture:

"The formal definition of autism includes three main components: deficits in social behavior, abnormal language, and repetitive or restricted (motor) behaviors (hand flapping, for instance). But it can also include a host of other associated features like seizures, mental retardation, GI disorders, dysmorphic appearance, and regression.

Insel compares talking about autism as a single disorder to talking about epilepsy or fever or chest pain as a single disorder. Discussions must include understanding details at many levels—genetic, environmental, cellular, behavioral, systems. While researchers may now increasingly refer to autisms (plural) or think of the disorder along a spectrum, these categories may cause more problems in getting to the underlying biology of the disorder. Current research suggests that autism is a developmental brain disorder, specifically a disorder of synapses." (Bold emphasis added-HLD)

Given Dr. Insel's view, as Director of the NIHM, speaking at MIT, that autism is a synaptic  disorder  would  it not be prudent for the DSM-5 team to hold off on  another transformation of the pervasive developmental disorders, already spoken of as autism spectrum disorders, until the research confirms (or refutes) the view that autism is a disorder of synapses?  Dr. Insel has indicated that describing autism as a disorder of synapses, synaptic disorder, may be more helpful in getting to the underlying biology of the disorder.

Synaptic Disorder instead of Autism Spectrum Disorder? Surely it should at least be considered by the American Psychiatric Association  as it once again revises the DSM. 

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Autism? Should CNN Have Said Prime-time Television Tackles Aspergers not Autism?

I punched "autism" into the Twitter Search bar and one of the entries referenced a CNN Entertainment story titled "Prime-time television tackles autism".  When I saw the headline I assumed that the story referenced Aspergers not Autistic Disorder and I was right.  In movies or television, fiction eg. Boston Legal, or news Aspergers is the face of Autism while severely disabled, including intellectually disabled, persons with Autistic Disorder remain safely hidden out of sight ... and out of mind.

And of course US President Barack Obama's administration has seen fit to place a very high functioning University student with Aspergers,  who does not view autism as a medical disability, and presumes to speak on behalf of those severely disabled by Autistic Disorder when he claims that "WE" do not want to be cured,  on a national disability council and on the Interagency Autism Coordinating Committee. At the same time the good doctors in charge of the DSM-5 are busy converting the alleged autism spectrum of disorders from the original Autistic Disorder into one consistent with High Functioning Autism and Aspergers.

Yes, the final step on the exclusion of those with Autistic Disorder and Intellectual Disability, comprising 75-80% of those with the current Autistic Disorder diagnosis, from the Autism diagnostic category  is well under way. with the creation of the New Autism Spectrum Disorder in the DSM-5.   

When  the DSM-5 autism revisions, and exclusion of low functioning persons with Autistic Disorder,  are complete no one will notice. They will be too busy watching characters with Aspergers on re-runs of Boston Legal and Parenthood.

 

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List of Excuses for Recent Autism Rate Increase - Add Your Own

The incidence of autism spectrum disorder in eight-year-olds in the U.S. has risen by 50% since 2007, from one in 150 to one in 100, according to a CDC report that will be released later this year. However, the higher rate might not mean that more U.S. children have autism spectrum disorder, but instead that physicians' ability to detect the disorder is improving, according to Tom Insel, director of the National Institute of Mental Health.

California Healthline, October 5, 2009

It was completely predictable.

As soon as word began to circulate that studies announcing an increase in autism diagnoses from 1 in 150 to 1 in 100 or is it 1 in 91 you had to know that the usual excuses would be trotted out so that health authorities could continue to deny that there actually is an autism epidemic.

1. The 1994 DSM definition changes are STILL being used to explain a 50% increase in autism rates between 2007 and 2009.

2. Increased social awareness.

3. Alleged availability of autism services. Autism diagnoses provided so that patient can obtain autism services.

4. Greater ability to detect autism. Thank you Dr. Tom Insel.

If anyone has any other excuses being used to deny that autism is really increasing despite a 50% increase in two years feel free to offer them for this list. Maybe it is time to stop conducting such surveys if the people who actually provide the surveys and studies do not take them seriously.

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Autism Rate Now 1 in 100: Here Comes the Diagnostic Change Excuse Yet Again

The CDC is now revising its autism rate figure from 1 in 150 to 1 in 100. Watch for the usual bright lights to trot out the 1994 DSM definition change to rationalize this very dramatic increase in autism rate estimates. From 1 in 500 to 1 in 250 to 1 in 166 to 1 in 150 to 1 in 100.

Amazingly the same factors - diagnostic definition change, increased social awareness etc are trotted out each time to deny that autism is really increasing. This happens almost as soon as the estimate is changed and without any science to back up the claim. Anything as long as we can deny that autism rates are really increasing.

Amazingly, US Secretary of HHS Kathleen Sebelius has, according to the Age of Autism, called for more genetic as opposed to environmental autism research to explain the increase.

Incredible. Someone should change her talking points.

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Has Autism Speaks Abandoned Severely Autistic Persons and Their Families?

I am not an Autism Speaks basher.

I have criticized specific decisions it has made such as the funding of research by Dr. Laurent Mottron who believes that the idea of curing autism is nonsense. I am appreciative though of the great work Autism Speaks has have done in raising awareness of autism around the globe including its work, in conjunction with the State of Qatar, in creating World Autism Awareness Day. A couple of days ago I thanked Autism Speaks on this blog site for the I Am Autism video which speaks some of the harsher truths about autism, particularly the severe ... and original ... autism.

But Jonathan Mitchell, at Autism's Gadfly, and Roger Kulp, who commented on this site, are correct. Autism Speaks has "kowtowed" to the Neurodiversity movement led by a gentleman with Aspergers and some Aspergers and High Functioning Autism followers. Autism Speaks has removed the I Am Autism Video from their main web site pages.

The barely autistic have once again succeeded in suppressing free expression about the harsher truths of autism, the harsher realities confronting those who would be classified as autistic BEFORE the DSM definition was expanded to include those with good or excellent intelligence, good command of language and who can have good social skills. These are the people who rise up in protest and condemn parents such as those who actually created the "I Am Autism Video" ... because they dared speak the truth. They are the people who do not want the world to know about the original, now barely visible, autistics with severe autism challenges.

Autism Speaks did not stand behind the parents who created the Autism Speaks video. By "kowtowing", as Autism's Gadfly put it, Autism Speaks has taken a huge step toward abandoning the severely autistic and their families. I have been a supporter of Autism Speaks but that support is beginning to fade as this once helpful organization aligns itself with those who do harm to the interests of the severely autistic that Autism Speaks once helped.

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Redefining Autism: Should the Autism "Spectrum" Concept be Abandoned?

Should the concept of an autism "spectrum" of disorders be abandoned?

The DSM III originally included strict criteria for Kanner's infantile autism. These strict criteria were relaxed in the DSM III-R which "broadened the concept of autism to include children who, although socially impaired, are not pervasively unresponsive to others(1)". Another huge expansion took place with the DSM IV inclusion of Asperger Disorder in the Pervasive Development Disorders category: "Asperger Disorder is characterized by the same types of social impairments seen in autism plus the development of very bizarre intense interests such as bus timetables, insects, meteorology, cartography, etc. It is distinguished from autism by the presence of normal cognitive development and the absence of clinically significant language delay. In other words, children with Asperger Disorder have normal IQ and usually are speaking in phrases by three years of age.(2)"

The PDD's have in common usage become referred to as Autism Spectrum Disorders and from there it has become common to refer to all forms of PDD's as "Autism". The expansion of the autism "spectrum" has been cited each time an increase in rates of autism diagnoses is reported. When my son was initially diagnosed in 1998 the figure of 1 in 500 persons having "autism" was commonly cited, then 1 in 250, 1 in 166, then 1 in 150 and soon the CDC is expected to fall in line with the UK figure of 1 in 100. Each time the estimate changes the expansion of the criteria for defining "autism" is trotted out to argue against the existence of a real increase in autism.

The expansion of the diagnostic criteria of "autism" disorders have become a useful tool for public health officials who wish to maintain the position that autism is entirely genetic, that there are no environmental causes and especially that autism can not be triggered by vaccines. It helps in justifying the enormous disparity in funding genetic autism research compared to environmental autism research. In 1999 Teresa Binstock reported the "it's gotta be genetic" paradigm of autism research funding. Ten years later Irva Hertz-Picciotto states that the discrepancy is still between 10 or 20 to 1 in favor of genetic over environmental autism research funding. The expanded definition explanation has been used, used again, and again in justifying the argument that there is no real increase in autism increase, that autism is entirely genetic.

The expanded definition of autism to include High Functioning Autism cases and Asperger Disorder creates confusion in the public mind over what constitutes autism and leads to conflict amongst persons affected by "autism". To many members of the public an autistic person is someone like Michelle Dawson, a former Canada Post postal worker who excelled in a very complex work environment, went on to become a researcher, appear before the highest court in Canada, before Human Rights Tribunals and in countless media interviews. They do not see the autistic person who can not speak OR communicate with assistive technology. The public does not see the persons with Autistic Disorder living their lives in institutional care.

Persons with Asperger and HFA often react to what they call negative depictions of autism which they no longer consider to be a medical disorder, equating autism with left handedness or homosexuality as differences not disorders. The recent anger amongst persons with HFA and Asperger Disorder over the "I Am Autism" video is directed at the depiction of some of the harsh realities that often accompany Autistic Disorder. These people do not want to be associated with intellectual deficits, serious behavioral issues or serious family or societal expense. It hurts and offends some with HFA and Aspergers to be compared to people with severe Autistic Disorder, people like my son.

The "spectrum" concept that helps create confusion also helps create some confusion in autism research. Researcher Dr. Laurent Mottron works almost exclusively with HFA/Asperger subjects and his research often been aimed at demonstrating the innate abilities of persons with HFA/Asperger Disorder. Historically Dr. Mottron was conscientious about pointing out that his subjects were persons with HFA/Asperger Disorder as opposed to persons with Low Functioning severe Autistic Disorder. Some recent studies have not made that distinction clear and his studies are also interpreted by many as applying to "autism" generally. It is difficult to compare autism studies or data over extended periods of time because of the different ways in which autism is referred to in the research literature with some making clear distinctions between low functioning Autistic Disorder and those with HFA or Aspergers while others simply refer to Autism.

One of the most bizarre consequences of the expanded definition of autism in the DSM-III R and DSM-IV is the attempt by some persons with Asperger Disorder to extinguish the right and responsibility of parents to speak on behalf of their autistic children or to seek treatment and cure for their children. The "Autism" Self Advocacy Network is led by Ari Ne'eman a very high functioning person with Asperger Disorder whose disorder would not have been included in the "autism" spectrum in the DSM-III or the DSM-III-R.

Why Mr. Ne'eman and his followers are not content to call themselves the Asperger Self Advocacy Network is not clear. Why this very high functioning person with Asperger Disorder feels that it is legitimate for him to speak on behalf of all persons with Autism Disorders of any type and declare that they do not want to be cured is not clear. Why he, and his followers, feel it necessary to lobby against any negative depiction of autism is not clear. Why he, and his followers, feel that they have the right to dictate to parents that they should not seek to treat or cure their own children of a severe neurological disorder is not clear.

What is clear is that the Pervasive Development Disorder category of the DSM has morphed into the Autism Spectrum and from there to "autism" and this has not been helpful.

Maybe it is time to abandon the Autism "Spectrum" and establish two separate categories with Autistic Disorder comprising classic autism while HFA and Aspergers Disorder are placed together in one category .... Aspergers Disorder.

Or perhaps a better solution to the Autism Spectrum confusion would be to abandon the spectrum concept altogether by removing HFA and Asperger Disorder from the DSM leaving only Autistic Disorder as a category for those with severe or low functioning autism. Many persons with HFA and Aspergers argue that they do not have a medical disorder at all. Maybe it is time to acknowledge their arguments, remove Asperger Disorder from the DSM, and go back to the DSM III criteria for Infantile Autism or Autistic Disorder.

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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.

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Autism Diagnoses: DSM V Should Separate Autistic Disorder from Aspergers and HFA

There are two major problems with the current DSM categorisation of Pervasive Developmental, or Autism Spectrum, Disorders. One is the lack of any relevant distinction between Aspergers Disorder and those with higher functioning PDD-NOS and autistic disorders.

The other DSM problem which generates much unnecessary conflict is the inclusion of these various disorders on a "spectrum".

This inclusion of substantially different disorders, with wildly different challenges, in one "spectrum" of disorders implies that the very serious challenges of persons with Autistic Disorder who lack a fundamental understanding of the world, who have very limited abstract thought and who have very little in the way of communication skills are somehow fundamentally similar to persons with good to excellent facilities in all these crucial areas of life.

The intellectual, understanding and communication deficits of the severely autistic should be recognized in a category separate from the high functioning persons who live in the media spotlight and purport to speak on their behalf, even while they deny their existence, and complain that honest description of their realities by loved ones constitutes stereotyping and "pity partying".

Research is resulting in more and more people describing autism in the plural as autism disorders with different causes and different possible treatments. The life realities for those with severe Autistic Disorder are much different than those of Ari Ne'eman, Dora Raymaker, Alex Plank, Michelle Dawson, Amanda Baggs, Jim Sinclair and other high functioning "autistics" and "Aspergians". The real life challenges of these two groups are very, very different and the DSM should reflect those differences.

As an added bonus if the DSM V modified its autism spectrum as suggested, ASAN and other HFA and Aspergers groups would not have to feel embarrassed by lower functioning, more severely affected persons with Autistic Disorder. My son Conor, who I love dearly, is one of those lower functioning, severely autistic persons that the Neurodiversity crowed is embarrassed by. I speak honestly about his challenges. I do so as the father that has loved and cared for him for 13 years and will do so as along as I am alive. I do not see his autism realities, his real life challenges and prospects reflected in the ideology and rhetoric of the "autism is a culture, a natural variation" crowd at ASAN.

It is time for the DSM to get realistic about the Autism "Spectrum".

It is time to merge High Functioning autism disorders with Aspergers Disorder and separate them from Autistic Disorder.

It is time for the DSM to recognize the importance of levels of ability to function in and understand the world and to reflect those levels in their classification of development disorders.

I say this on behalf of my son with Autistic Disorder and profound developmental delays. I say this as the person with the legal and moral right to speak on his behalf since he cannot.

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With Autism Rising in Indiana, 1 in 113, it is Time to Study Environmental Toxins and Autism

The United Kingdom is not the only jurisdiction in the world with a higher rate of autism diagnosis than the 1 in 150 estimated by the CDC or the 1 in 166 to which the Canadian Neuroscience & Neurodiversity establishments cling.

In a series the likes of which is unlikely to surface at the New York Times, the Globe & Mail or the CBC, 'On the Trail: Autism and the Environment', the Bloomington Alternative examines autism in relation to environmental toxins. In Indiana: High rates of autism, toxic pollution, the Stephen Higgs, continues his autism and environmental toxins series at BA with a report on Indiana's high rates of autism and toxic pollution noting that Indiana's identified autism diagnoses rate changed from 1 in 128 to 1 in 113 in one year.

The Denialists will point, yet again, to the change of diagnostic criteria back in 1993-4 as an explanation for this latest increase in diagnoses in Indiana. They will offer no actual study to back up the claim, a claim that grows weaker each time it is trotted out to explain a new increase in autism rates, and as we move further away in time from 1994. Seriously, 15 years after the change in DSM autism definitions it is no longer credible to point to the 1994 DSM change as a full explanation for the startling increases in diagnoses.

It is time to look at ALL possible environmental causes of autism from vaccines to industrial plants and toxic toys and jewelry. It is not enough to scoff and pretend to be "scientific" while denying, refusing to look at possible causes of autism as suggested by facts and evidence.

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On World Autism Awareness Day Remember the Invisible and Forgotten Ones

Two days from now, on April 2, the world will recognize for the second time World Autism Awareness Day. WAAD is the result of an outstanding initiative led by Autism Speaks and the State of Qatar.

As the father of a 13 year old boy with autistic disorder, assessed with profound developmental delays I thank both Qatar and Autism Speaks for this monumental step forward in facing the challenges of autism spectrum disorders around the globe.

Everyone with an autism spectrum disorder (Pervasive Developmental Disorder) by definition has serious deficits or challenges to face. For each such person their challenges are undoubtedly large and complex realities of their daily lives. There are different degrees or severity of autism disorders though and this is implicitly recognized in the DSM which in the definition section of Asperger's Disorder expressly excludes persons with clinically significant delays in language, cognitive development or age appropriate self-help skills. (Some of the very intelliglent, highly articulate leaders of the "autism" advocacy movements are in fact persons with Asperger's Disorder such as Ari Ne'eman and Alex Plank).

The mainstream media CBC, CNN, New Yorker Magazine for example tend to interview and present persons with Asperger's Disorder and higher functioning autistic disorder to the world as being representative of persons with autism. Very, very few features about autism focus on the invisible persons with severe forms of autism, the forgotten ones who live as adults in institutional care or very controlled community group homes. [The exception to this rule is the Vancouver Sun which provided the most comprehensive presentation of persons with autism from all points of the autism spectrum with its excellent Faces of Autism series. The Vancouver Sun, Pete McMartin, columnist, and Glenn Baglo, photographer, deserve full credit for daring to portray realities of life for persons from across the full spectrum of autism disorders and their families.]

The invisible autistic persons live in institutional settings because of the severity of their autism disorders. Some are violent towards themselves or others. Some lack the skills to function at all in the world without assistance. Simply closing such places is not an answer even if it makes the public feel better. For many, without institutional care they would have no where to live, no means of survival. For me such severely autistic persons are not invisible or forgotten. Unlike some of the dilettante, mainstream health "journalists" I have visited institutional facilities providing lifelong residential care and treatment to severely autistic persons. My son could well end up residing in such a facility after I am dead.

On World Autism Awareness Day I will think of all persons with autism disorders including my friends with Asperger's Disorder. And I will think of and remember the invisible and largely forgotten persons with severe autistic disorder. I will not ignore or forget them. I respectfully ask you to do the same.

It is my hope that World Autism Awareness Day continues in perpetuity and that long after I am dead people will be thinking of all persons with autism disorders, including the severely autistic, including my son, Conor Doherty.

Thank you for considering my request.

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Does Vaccine Patent Holder Paul Offit Even Know What Autism Is?

Does vaccine patent holder Dr. Paul Offit even know what autism is?

Dr. Offit has been on a never ending crusade against parents of autistic children concerned about vaccine impacts on children, and professionals who share their concerns. The extent of his autism expertise has never been entirely clear though. Dr. Jon Poling questioned Dr. Offit's autism expertise in his Atlanta Journal Constitution guest editorial, Blinders won't reduce Autism, March 13, 2009. Wikipedia has a glowing summary of the heroic vaccine patent holder's career as a pediatrician specializing in infectious diseases, an internationally known expert on vaccines, immunology, and virology. The article makes no mention of any autism expertise or actual involvement by Dr Offit with autism disorders.

Unlike Dr. Offit I am not an internationally known expert on vaccines or any other medical topic. I have never visited a hospital and seen the effects of polio on children as Dr Offit has. I am just the humble father of a severely autistic 13 year old boy who has first hand knowledge of the realities of severe autism and the impact it can have on a child's life and prospects. I have been actively involved with local autism organizations and issues. And I have visited mental health facilities and witnessed first hand the realities of life for severely autistic persons living their adult lives in institutional care.

I was surprised to read in At risk: vaccines How a legal case could cripple one of modern medicine's greatest achievements, a 2007 Boston Globe guest editorial by vaccine patent holder Paul Offit, the following comment:

"although large quantities of mercury are clearly toxic to the brain, autism isn't a consequence of mercury poisoning; large, single-source mercury exposures in Minamata Bay and Iraq have caused seizures, mental retardation, and speech delay, but not autism"

Dr. Offit does not indicate what levels of mercury are NOT toxic to the brain but the startling aspect of Dr. Offit's comment is that he recognizes that mercury can cause seizures, mental retardation and speech delay but then declares that mercury can NOT cause autism?

Although not part of the express definition of autism both seizures and mental retardation
(cognitive deficits, intellectual deficits or whatever the euphemism treadmill is churning out these days to describe mental retardation), are often associated with Autistic Disorder.

Speech delay is in fact one of the definitional criteria for Autistic Disorder in the DSM:

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

As the parent of a 13 year old with Autistic Disorder, a child who is severely autistic, I would assume that a child with mental retardation, seizures and speech delay is probably autistic and would seek a professional diagnosis. I find it startling that Dr. Offit would mention these conditions as resulting from mercury exposure and not see any possible autism connection. He was either being disingenuous in not recognizing that these factors strongly suggest autism or he just does not know what autism is.

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Severe Autism: Mandy's Blog

I recommend that anyone interested in the realities facing severely autistic persons avoid mainstream media organizations and most internet blog sites. These sources,eg. CNN, CBC, The New Yorker, Autism Hub sites, tend to focus on the realities and agendas, of an alleged autism rights movement, consisting of a few high profile high functioning persons and persons with Aspergers. One internet exception worth visiting is a blog called Mandy's Blog at mencap.org.uk.

The alleged autistic rights movement actually suppresses the rights of the more severely autistic persons, badly in need of treatment, cure and assistance at all stages of life, by asserting that autism is simply a natural variation, that Neurotypicals should not seek to cure autistic persons, even their own autistic children, even when those children are actually much more severely autistic than the media posing "autistic rights" leaders.

The autism rights leaders like to publicly identify autism with very intelligent historical figures and frown upon the very mention of severely autistic persons; a reality they deny. Even discussion of autism, a spectrum of disorders, in terms of degrees of severity is attacked. After all it is difficult to claim the right to speak on behalf of a large group of people if in fact you faced very different challenges and they have never asked you to speak on their behalf. Better to pretend that the differences do not exist.

The introduction to Mandy's Blog makes it clear that this is not the usual joy of autism stuff where the mere mention of the severely autistic is frowned upon:

Charlotte is my daughter. She is 12 years old, blonde and pretty (although I am biased of course) and has severe autism.

When I read Mandy's description of her severely autistic 12 year old daughter I am struck by the similarities with my severely autistic 12 year old son, her echolalia, her bubbly personality, and her entertainement choices are all strikingly similar to my son Conor. Mandy speaks in a straight forward, realistic manner about the challenges facing her and her daughter.

I encourage everyone interested in learning about the challenges facing those with severe autism and their family members to visit Mandy's blog.

autism

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