IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder, On World Autism Awareness Day

Conor  a year ago at the local ICU where he stayed for 6 days while the ICU professionals worked to save his life and return him to us in good health after a serious adverse reaction to his seizure medications.  Other parents of children with severe autism disorders and intellectual disabilities should be made aware that their children are at very substantial risk of seizure activity particularly with the onset of adolescence.  We didn't know these well established relationships with any certainty until our son started experiencing them. 

April 2 will be another World Autism Awareness Day in which the harsh realities that many with autism disorders live with will once again be hidden from public sight.  Everyone will wear their blue shirts (including Conor and me)  and many will put blue lights in front of their homes, businesses and legislatures.  The Autism Feel Good crowd will tell everyone that autism is a difference not a disability and some will tell the world that historical geniuses in every field in the sciences, math, literature, art from Van Gogh to Einstein were probably autistic. 

A misconception underlying much of the WAAD false awareness is found in the DSM assertion that there is one autism disorder with only 2 diagnostic criteria: Social communication/social interaction deficits and  Restricted, repetitive patterns of behavior, interests, or activities. The DSM does also reference various "comorbid" conditions sometimes found in connection with autism including several from which my now 18 year old son has suffered along with his severe autism disorder: wandering, self injurious behavior, reactive aggression, absence seizures and tonic clonic seizures.  The DSM categorization of disorders, as none other than NIMH Director Dr Tom Insel has pointed out, have no solid evidence basis for its conceptualizations of disorders. TheyDSM categories lack validity. So said Dr Tom Insel before he repeated it again (sort of) but stated that he only meant it for research not clinical purposes. 

One of the areas in which the DSM5 erred egregiously (in the humble opinion of this lowly father of an 18 year old son with severe autism disorder, intellectual disability and epileptic seizures)  was to combine the 3 varied and distinctively different disorders of Autistic Disorder, PDD-NOS and Aspergers into one "spectrum" disorder.  Renowned autism experts , including such authorities as Lynn Waterhouse, in Rethinking Autism: Variation and Complexity,  have started to explicitly describe "autism" as a varied, complex and heterogenous group of disorders or symptoms. Dr Waterhouse has again written on the subject of autism heterogeneity in a paper co-authored with Christopher Gillberg, (2014) Why Autism Must Be Taken Apart, the abstract of which states:

"Abstract

Although accumulated evidence has demonstrated that autism is found with many varied brain dysfunctions, researchers have tried to find a single brain dysfunction that would provide neurobiological validity for autism. However, unitary models of autism brain dysfunction have not adequately addressed conflicting evidence, and efforts to find a single unifying brain dysfunction have led the field away from research to explore individual variation and micro-subgroups. Autism must be taken apart in order to find neurobiological treatment targets. Three research changes are needed. The belief that there is a single defining autism spectrum disorder brain dysfunction must be relinquished. The noise caused by the thorny brain-symptom inference problem must be reduced. Researchers must explore individual variation in brain measures within autism.”

I am not an autism expert. I am the father, as I have stated, of an 18 year old son with autism, intellectual disability and seizure activities becoming most pronounced during his teen years when absence seizures became frequent and eventually became identified with grand mal or tonic clonic seizures.  As I have confessed, this pseudo tough guy was scared stiff to hear the sounds emitted by my son's body during the onset of his first tonic clonic seizure, to find him laying on his side his body jerking violently with drool oozing out of the cornier of his mouth.  He suffered two such seizures and a life threatening adverse reaction to his first seizure medication (Rhabdomyolysis)  which landed him in the ICU (Intensive Care Unit) of the local hospital where the ICU team saved his life and gave him back to us.

My son's condition is recognized in many autism study statistics. The World Health Organization, 2013, estimates that approximately 50% of persons with autism disorders also have an intellectual disability.  To me that large a number is not a "coincidence" or a "comorbidity" whatever that term is meant to signify in the real world. To me my son's autism and intellectual disability are aspects of one brain disorder.  

Given those two aspects of my son's brain disorder it should not have come as a surprise to me that he might be at very substantial risk of suffering seizures, particularly with the onset of his teen years.  The scientific literature indicates that persons with autism spectrum disorders have a much higher rate of epilepsy than the general population; as high as 30%.  The literature also indicates that, among persons with autism. the rate of those who also have epileptic seizures is substantially higher among those with .... intellectual disability and the seizures often become apparent during the teen years ... exactly what happened to my son with severe autism and intellectual disability. 

My son's autism is not the autism of Temple Grandin, Michelle Dawson or Ari Ne'eman.  He was diagnosed early 16 years ago at age 2 years because of the severity of his diagnostic symptoms and the tenaciousness of his mother who pressed our good doctors the hardest for a medical understanding of our son's condition.  

Still with the autism and ID we did not anticipate the onset of seizure activities. This humble father recommends strongly that on World Autism Awareness Day, Autism Speaks and other autism organizations should be honest with people around the world and tell them that where autism is present in a child there is a substantial risk of epileptic seizures.   

I also humbly recommend that the great autism thinkers of our day should consider looking at and studying instances of combined Intellectual Disability, Autism and Epilepsy as one group of conditions that might have a common origin in the brain as I believe to be true based on living with my son for 18 years. 

IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder.  By all means reject it if you believe based on study and evidence that it is unsound but don't reject it solely because a lowly parent makes the suggestion.  I have 18 years of 24/7 experience living with these conditions in my son. Statistics and professional expertise obviously count and in our society are determinative but the direct observation and experience of parents should not be ignored or ridiculed as it is all too often. 

Autism Speaks Reluctantly Confesses: 40% Of Persons On Autism Spectrum Have Intellectual Disability

Intellectual Disability remains the Elephant in the Autism 

Living Room;no one wants to admit it's there or to talk about it

It is politically incorrect in today's autism world to acknowledge the existence of the invisible autistics, the one's unlike Ari Ne'eman, John Elder Robison, Alex Plank and  Michelle Dawson all of who whom have enjoyed great success and demonstrate considerable intelligence and most of whom have never met a television camera or gathering of journalists that offends them. Some of the extremely high functioning superstars of autism "self" advocacy have literally built careers telling the world what it means to be "autistic".   Meanwhile those with intellectual disability who constituted autism's "vast majority" prior to the DSM-IV expansion of the pervasive developmental disorder category to include Aspergers remain invisible and unmentionable in polite, successful autism circles:

"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."

CDC Autism Expert Dr. Marshalyn Yeargin-Allsopp 

Against that background I must give some slight praise to Autism Speaks for daring to mention, albeit hidden deep in  the FAQ section, carefully book ended by reference to autistic savant skills and those with normal to above average intelligence, that, Oh My Gosh,  40% of persons on the autism spectrum have an intellectual disability:

What Does it Mean to Be “On the Spectrum”? 

 Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have intellectual disability (IQ less than 70), and many have normal to above average intelligence. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. Others with autism have significant disability and are unable to live independently.

Autism Speaks, like the APA committee that drafted the DSM5 autism criteria to exclude the most severely intellectually disabled from an autism diagonosis even if they meet all the specific criteria for an autism spectrum disorder, does not wish to openly speak the truth: intellectual disability is not just a co-morbid or coincidental disorder that just happens to be present in the vast majority  of cases of classic autistic disorder. It is for the original vast majority a description of their  developmental deficits, while those with Aspergers do not have intellectual or language deficits most of those with Autistic Disorder do.  The intellectual disability is a feature of their autism disorder whether extremely high functioning Aspergers self advocates, fund raising entities like Autism Speaks or even the APA wish to acknowledge it.  

There is no reason to artificially separate the intellectual disability from the "autism" symptoms.  There is no scientific basis for doing so and it is morally and ethically wrong to do so.   

It is scientifically unsound to hide the reality that intellectual disability is an integral part of autistic disorder.  It is just as immoral and unethical to hide that reality, to pretend that intellectually disabled are not truly autistic as it would be to pretend that persons of different racial, gender characteristics or sexual orientations do not count as full human beings. 

World Autism Awareness Day 2014

If past is prologue very little awareness of the harsher realities of autism symptoms will be generated on this WAAD, April 2, 2013.  Next year, in 2014,  and for years thereafter, the streamlined DSM5 autism will also eliminate many on the very high functioning and low functioning ends of the autism spectrum. 

It is unfortunate that in the DSM5 Autism Spectrum Disorder definition the American Psychiatric Association is revising the medical definition of autism spectrum disorder in ways that are expected to change its diagnostic characteristics. There is no good reason to wreck havoc on autism research and diagnosis by redefining yet again what we are talking about when we say "autism".  

The autism disorder picture, already muddied and muddled by "self" advocates and others who promote autism as a blessing,  will have even less real meaning as the APA, without any scientific or ethical reason, eliminates the most severe cases of autism from future diagnosis. Autism research, already challenged by previous DSM definition changes and alleged increased awareness, will become increasingly challenged.  

The actions of the APA in redefining autism in the DSM5 reflect the intellectual biases of the APA drafters, are in breach of the "first do no harm" principle and  are unethical. Be aware of that on this World Autism Awareness Day 2013 and prepare for a new autism on WAAD 2014, one that will look much different than the autism about which the world is expected to become more aware today.

World Autism Awareness Day 2013 Should Include Some Autism Reality

April 2, 2013 will feature another World Autism Awareness Day around the world.  Many blue lights will shine, politicians will pose and take credit for helping advance the cause of autistic persons and their families, countless media reports will talk about the gifts of autism and television series and movies alike will feature gifted individuals and autism, once again, will be portrayed for public consumption as the domain of brilliant if socially quirky personalities.  Little if anything will be said about the vast majority of those with autistic disorder who are limited by intellectual disability, or about  those who suffer from  obsessive behaviors, serious sensory issues, epilepsy and seizure activity, self injurious behavior, or spontaneous aggression in the form of property and furniture damage or even reactive, spontaneous aggression towards parents and caregivers. Of course nothing whatsoever will be said about the ultimate realities facing autistic children and their families.  We all age, our children become adults and the parents who care for their children grow old, feeble and .... deceased. When these events occur our severely affected autistic children will live out their time in various types of institutional arrangements including psychiatric hospitals ... if they are among the fortunate with any place to live.   

Feel free to keep shining your blue lights and repeating the words autism awareness until you are ... blue in the face. But please try to actually raise autism awareness by talking about the serious challenges facing those with autism symptoms and disorders from which they will suffer for the rest of their lives. 

Shine your blue lights but start being realistic. If you really care about some one with autism and want to help the and make positive changes start by telling the world the truth about autism.  Create some reality based autism awareness.

On World Autism Awareness Day Canadian Government Damned Itself With Faint Praise

Damn With Faint Praise

Compliment so feebly that it amounts to no compliment at all, or even implies condemnation. 

For example, The reviewer damned the singer with faint praise, admiring her dress but not mentioning her voice. This idea was already expressed in Roman times by Favorinus (c. a.d. 110) but the actual expression comes from Alexander Pope's Epistle to Doctor Arbuthnot (1733): "Damn with faint praise, assent with civil leer, and, without sneering, teach the rest to sneer."

 Answers.com

The Government of Canada, with its World Autism Awareness Day message from the Honourable Leona Aglukkaq, Minister of Health,  damned itself with faint praise for its feeble efforts to help children and adults with autism disorders in Canada:

April 2, 2010

As Minister of Health, I am pleased that Canada is joining other countries in recognizing April 2nd as World Autism Awareness Day. I would like to take this opportunity to thank the Autism Society of Canada and all autism organizations across the country for their tireless work in creating awareness about Autism Spectrum Disorder (ASD) and providing support to those affected by this condition.

ASD affects people from all walks of life, as well as their families, friends and caregivers. Roughly one out of every 150 Canadian children is affected by ASD . While there has been progress in research, care and education, we need to learn more about the causes of ASD and the most effective treatments and interventions.

The Government of Canada recognizes that autism is an important health and social issue which presents challenges for many Canadian families. We are committed to supporting research and raising awareness. The Canadian Institutes of Health Research has provided approximately $35.3 million for research related to autism since 2000. 

I would like to express my sincere appreciation to every autism organization in Canada for their continued dedication to improving the lives of Canadians living with ASD.

Leona Aglukkaq

Minister of Health

Government of Canada 

You will notice that the Government of Canada's World Autism Awareness Day message makes no reference to any  monies spent  to assist the provincial governments in providing effective evidence based preschool interventions, autism specific training of teachers and education assistants  or autism appropriate residential and treatment facilities for youths and adults.


The sum total spent by the Government of Canada to address Canada's autism crisis, "an important health and social issue which presents challenges for many Canadian families"to quote the Honourable Minister of Health, is $35.3 million dollars for research ....... over a 10 year period from 2000 to 2010.

Alexander Pope, were he with us today, might say that the Government of Canada has damned itself with faint praise,  that it has, without sneering,  taught us all to sneer  ..... at its less than feeble efforts to address Canada's important health and social issue, our national autism crisis.  

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

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

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

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

299.00 Autistic Disorder

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

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

   (a)

   marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

   (b)

   failure to develop peer relationships appropriate to developmental level

   (c)

   a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

   (d)

   lack of social or emotional reciprocity

   
   
   
   
   


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

    

   (a)

   delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)

   (b)

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

   (c)

   stereotyped and repetitive use of language or idiosyncratic language

   (d)

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

   
   
   
   
   
   


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

   (a)

   encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus

   (b)

   apparently inflexible adherence to specific, nonfunctional routines or rituals

   (c)

   stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

   (d)

   persistent preoccupation with parts of objects

   
   
   
   
   

(B)   

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

 

(C)

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

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

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