AUTISM CHILD BEHAVIOR

Every day with my buddy Conor is a joy because of who he is. Every day with Conor requires extra concern and attention to his well being because of the autism disorder that restricts his life and presents serious challenges to his ability to participate in it like others of his age.  Today though autism was the least of Conor's, or my, worries.  Today, shortly before 11 am I was upstairs and heard Conor downstairs making various noises ... as he often does.  But there was something different about the sounds I heard.  When Conor makes noises they may sound unusual at times but he is clearly making them, he is in control.  What I heard today was different.  Conor was making noises but they were not his usual kinds of utterances, he was not in control.  I went downstairs to see what was happening. 

When I saw Conor he was lying on his side on the living room floor.  His body was shaking violently back and forth. He did not appear conscious and he was not responsive to any attempt to elicit a response. Thick green and yellow fluid  had oozed out the side of his mouth. I tried to lift him and it was like trying to lift a pile of 190-195 pound bricks, there was no response. For a brief instant my mind flashed with the possibility that this might not end well.  I called 911 and the terrific  Emergency Measures Response team were soon at our door. With them  to offer direction, and with Conor's big brother providing help, I sat Conor up and then changed him. We were soon on the way to the Dr. Everett Chalmers Hospital where the wonderful staff of the DECH hospital took great care of our Conor with me and Mom beside him. Right now Conor is sleeping on one of our living room couches, with lots of blankets and comfy pillows. Mom is spending the night on the other couch. 

Autism is not responsible for today's emergency. We don't know for sure if epilepsy or some other condition was involved. What we do know beyond any doubt is that Conor suffered a grand mal seizure as defined by the Mayo Clinic:

Grand mal seizure 

 Definition By Mayo Clinic staff

A grand mal seizure — also known as a tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures in general. Grand mal seizure is caused by abnormal electrical activity throughout the brain. In some cases, this type of seizure is triggered by other health problems, such as extremely low blood sugar or a stroke. However, most of the time grand mal seizure is caused by epilepsy. Many people who have a grand mal seizure will never have another one. However, some people need daily anti-seizure medications to control grand mal seizure.

Hopefully the connections between various disorders ... or groups of symptoms ... known as autism, intellectual disability and epilepsy .... will be studied thoroughly and more time will not be wasted by academics spending years trying to find the perfect, stream lined definitions of disorders which are heterogenous, varied, complex and dangerous to those who suffer from them.  

For today I am thankful that my Conor is sleeping safe and sound in our living room.  Today I say thank you to the wonderful emergency measures response personnel and the staff of the Dr. Everett Chalmer Hospital emergency trauma ward.  Thank you very much.

Autism Speaks, commenting on and citing an article  from the Boston Globe,  reports that American Academy of Pediatrics President Elect James Perrin, M.D., F.A.A.P., has called autism an epidemic:

If you believe the DSM5 Neurodevelopmental committee responsible for expressly removing those with Intellectual Disability from the new, oversimplified Autism Spectrum Disorder when they claim that exclusion is based on current science you may want to reconsider. The DSM5 ASD excludes those with intellectual disability if the ID "accounts for" the mandatory social communication deficits of the DSM5 ASD. Even if a child has ALL the mandatory deficits in A,B, C and D it doesn't count, they are still excluded,  if the category A, social communication deficits can be "accounted for by general developmental delays".   This intentional culling of the autism spectrum disorder is purportedly based on current research a claim which I have always found to be extremely dubious with respect to the exclusion of intellectually disabled.  A new study further confirms the lack of scientific basis for the exclusion of those with severe ID from the new ASD.

The very high co-morbidity of autism and intellectual disability has been known for many years and the most recent CDC estimates had placed the figure at between 41 and 44% of all persons with pervasive developmental disorders (now commonly referred to as autism disorders). The figure for autistic disorder itself had been estimated as high as 70% of persons with Autistic Disorder and ID.  CDC autism expert Dr. Marshalyn Yeargin-Allsopp had referred to those with intellectual disability as representing the "vast majority" of those with  classic Autistic Disorder.

In 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, the authors reported that their study confirmed the relationship between ID and autism and suggested a new approach in the study of ID in order to elaborate a new integrated model for people with ID and autism.  Despite the relationship between ID and autism the new DSM5 ASD will exclude those most severely affected by ID and autism.  The oversimplified DSM5 ASD has clearly rejected the call by La Malfa and colleagues for a new integrated approach preferring to artificially cleave ID off from ASD. 

Now a new study by the The Scripps Research Institute (TSRI) published in CELL, November 9, 2012,  appears to completely rip the foundation out from under the DSM5 attempt to disassociate intellectual disability and autism. It does so by showing how a single gene already known to cause intellectual disability also increases the risk of developing autism.  Given the known high co-morbidity and this reported genetic connection it is difficult to see how the DSM5 team can continue to justify its express, targeted exclusion of intellectually disabled from the new ASD but I am sure they will try.

e! Science News provides an overview of the study and interviews lead TSRI researcher Gavin Rumbaugh, PhD:

 "In this study, we did something no one else had done before," said Gavin Rumbaugh, a TSRI associate professor who led the new research. "Using an animal model, we looked at a mutation known to cause intellectual disability and showed for the first time a causative link between abnormal synapse maturation during brain development and life-long cognitive disruptions commonly seen in adults with a neurodevelopmental disorder."

The DSM5 committee members who have crafted this non evidence based new ASD will not be influenced by this recent study.  I saw Dr. Susan Swedo speak twice at Toronto IMFAR 2012.  She appeared more personally offended by criticism than interested in seriously addressing the merits of such criticism.  The several studies pointing out exclusions at both the HF and LF ends of the autism spectrum under the DSM5 regime are simply dismissed on the basis that they are using old data, that is information used in diagnosing persons currently assessed with autism under the DSM-IV.  The DSM5 team responded with a "mine's bigger than your's" study which was led by DSM5 team member Catherine Lord who had previously confessed to the NYT Amy Harmon that the objective of the new ASD was to target intellectually disabled for exclusion. Real objective stuff?

The DSM5 team has dug in its heels on the New ASD. It has been recoiling from criticism of possible exclusion of persons at the very high end of the autism spectrum.  As always both the media and autism researchers (with the exception of John Matson) simply disregard both the DSM5 ASD language expressly targeting for exclusion the intellectually disabled and Dr. Lord's express confession that the exclusion is intentional. The DSM5 team paid no apparent attention to the La Malfa study or to the authors' conclusion recommending a new approach in the study of ID in order to elaborate a new integrated model for people with ID. The odds of the DSM5 team taking the TSRI study any more seriously are slim to none. 

The succinct and famous quote by Stephen Shore about the variation and complexity of autism disorders is cited often and just as often ignored. In fact it is ignored completely by the DSM5 which has merged high functioning autism and Asperger's into the streamlined New Autism Spectrum Disorder while ignoring the varied and complex realities, the heterogeneity of autism disorders.  As the parent of a severely autistic son with profound development delays, as an autism advocate who has visited adults with severe autism symptoms living in psychiatric facilities,  I do not agree with or support the vanilla flavored, stream lined DSM5 "autism". It does not reflect reality, it does not reflect the complex heterogeneity of autism disorders.

As a humble autism parent advocate  I am well aware that my opinions are worth   little to the DSM5 intelligentsia or to autism researchers generally. Most autism researchers tend to be courteous but dismissive, even condescending, in responding to my concerns about the express exclusion of the intellectually disabled under the DSM5 autism definition. That exclusion will make life easier for them as researchers but do nothing to help those who display all the symptoms of autism disorders but will be excluded because they are also intellectually disabled.

Autism researchers employing fMRI's that are widely featured and profiled in current autism research will be able to continue their misleading and unethical practices of excluding the most severely challenged autism participants while pretending their findings apply across the entire "autism spectrum".  Researchers will be able to continue their exclusionary practices because their needs are being accommodated by the DSM5 team which redefines autism to exclude those persons who are too difficult to study; who simply can not be counted on to sit still underneath a machine or to answer a questionnaire.

There are, however, voices that are more difficult to ignore; be they critics generally of the DSM5 or those who specifically critique the new autism definition.  Frances, Volkmar, Ritvo, Matson are but a very small selection of the credible autism and mental health researchers who have questioned the DSM5's  new and oversimplified Autism Spectrum Disorder.  In previous commentaries I have mentioned Lynn Waterhouse's writings on the complexity and variation of autism. Her vision of autism, as I understand it (while still working my way through her recent book on the subject) is inconsistent with the simplified autism of the DSM5.

Thomas R. Insel, M.D.. Director, National Institute of Mental Health (NIMH) and Chair of the IACC has not, to my knowledge, openly criticized the DSM5 generally or the DSM5 Autism Spectrum Disorder.  On his Director's Blog in the commentary Words Matter though he offers a picture of autism that reflects its complexity not the oversimplified, streamlined DSM5 version of autism:  

" ...  there are many barriers to progress, not all of them are scientific. Some involve policy, some involve poverty, and remarkably, some are simply linguistic. In mental health, we are stymied by our language. The most obvious linguistic problem can be found in our current diagnostic terms, what my predecessor Steve Hyman has called “fictive categories.” Terms like “depression” or “schizophrenia” or “autism” have achieved a reality that far outstrips their scientific value. Each refers to a cluster of symptoms, similar to “fever” or “headache.” But beyond symptoms that cluster together, there should be no presumption that these are singular disorders, each with a single cause and a common treatment. Recall that Bleuler, who first introduced the term schizophrenia over a century ago, referred to “the schizophrenias.” And with new genetic discoveries, scientists are beginning to describe “the autisms,” a group of neurodevelopmental disorders of diverse causes. 

.......  

"there is a more fundamental role for science, which is nothing less than the quest for understanding our world. The homeless man with schizophrenia, the non-verbal child with autism, and the soldier with PTSD need services and treatment, but also understanding—because the quest for understanding spawns compassion, intimacy, and even wonder."

Insel's autisms, a group of neurodevelopmental disorders with diverse causes, reflects the complex, varied, heterogeneity of autism symptoms and challenges. Lynn Waterhouse in  Rethinking Autism: Variation and Complexity has provided a similar perspective, an alternative to the DSM5's oversimplified and exclusionary Autism Spectrum Disorder.  

The APA will probably push through with the simple version of autism.  It will not advance the science involved in understanding autism.  It will not assist in finding causes, risk factors, treatment or cures for autism disorders.  It will not assist in  providing services that better fit the complex and varied challenges facing those who actually suffer from the daily limitations the autism disorders impose on their lives.

The DSM5 oversimplified  autism will probably be pushed upon us by Lord, Swedo and company. Hopefully though clinicians and researchers will not follow their lead and will instead consider the Waterhouse and Insel perspectives,  rethink the autism disorders, and embrace the varied and complex realities they present so that those who suffer from "the autisms" can be better helped to live happier,  more rewarding lives.

Four years ago, in Autism's Outcasts, I wrote about the exclusion from public consciousness,  and from autism research,  of those with autism and intellectual disabilities.  I am re-posting the research portion of Autism's Outcasts below. The comment overall talks about the media tendency, as demonstrated at that time by CBC and CNN, to exclude the harsher realities of severe autism, including those with associated with intellectual disability, from their generally feel good portrayals of autism disorders. At the time I was unaware that  the DSM5 autism "experts" would soon thereafter take steps to officially cast the intellectually disabled out of the Autism Spectrum Disorder by the express exclusionary language of the introductory paragraph of Mandatory Criterion A and that it would be based on the same autism research bias against the intellectually disabled that was known both to a humble autism dad like me and to DSM5 Neurodevelopmental Committe captain Dr. Catherine Lord who acknowledged that bias in  Social Policy Report, Autism Spectrum Disorders Diagnosis, Prevalence, and Services for Children and Families:

""However, research in ASD has tended to use overwhelmingly White, middle to upper middle class samples, and has often excluded children with multiple disabilities and/or severe to profound intellectual disabilities". [underlining added - HLD]

The express exclusion of the severe to profound intellectually disabled in the DSM5 Autism Spectrum Disorder is found in the introductory paragraph of Mandatory Criterion A:

Even if a person exhibits all the persistent deficits of Mandatory Criterion A, B, C and D that person will not receive an autism diagnosis if the Criterion A deficits can be explained by "general developmental delays" or intellectual disability. Unlike those who will not receive an autism disorder diagnosis because they do not exhibit all the mandatory criteria for a DSM5 ASD diagnosis those with severe intellectual deficits who meet all of the criteria will still be excluded on the basis of the faulty, non evidence based logic that, even though an intellectually disabled may exhibit all the mandatory criteria for the new ASD, including the 3 deficits listed under category A, it doesn't matter because .... they are severely intellectually disabled.  

No explanation for the exclusion has been provided that makes any sense.  I have read the public comments by Dr. Catherine Lord, I have attended IMFAR and asked Dr. Susan Swedo directly about this exclusion and no sensible explanation for casting out the intellectually disabled from the autism spectrum has been provided.  

The DSM5 generally, and the DSM5 Autism Spectrum Disorder specifically, have been explained on the basis that the changes introduced reflect current research.  With respect to autism however that explanation is not satisfactory.  It is not satisfactory because those with severe autism deficits, particularly those with profound intellectual disability have been excluded, merely for reasons of convenience, from much autism research,  as set out in the 2008 Autism's Ouctasts comment that follows:

"Autism Research - Exclusion of Lower Functioning Autistic Subjects

In The face of Autism research as reflected in the IMFAR looking glass, Research in Autism Spectrum Disorders 2 (2008) 385–394, authors James M. Bebko, Jessica H. Schroeder, Jonathan A. Weiss, Kerry Wells, Kristen McFee and Gayle M. Goldstein reviewed the abstracts from a major autism conference (IMFAR) from 2004 to 2006. They found an increase in the proportion of studies with preschool or infant participants. There was also a decrease in studies using lower functioning samples, and an increase in studies using Mixed samples. The use of control groups generally decreased, and the use of cognitively impaired comparison groups remained low:

Associated with this profile in the use of comparison groups in studies presented during this time period is an apparent decreasing representation of individuals with low or moderate intellectual impairments in the studies. One risk of such a trend is that our understanding of autism may become biased to the higher end of the functioning continuum. It is important that research continue to include individuals with cognitive impairments to ensure that our knowledge based on etiology, assessment, and intervention continues to expand across the entire range of expression of the disorder." [Bold highlighting added HLD]
The autism research bias in favor of the higher end of the functioning continuum and against the intellectually disabled at the lower end of the autism spectrum has been reflected in the recent research such as fMRI research which excludes severely autistic children from their studies because of the difficulties they present as subjects particularly the difficulty in ensuring compliance and limited motion during the use of the fMRI.  The researchers' solution? Just exclude and ignore the intellectually disabled, severely autistic from their studies and generalize to the entire spectrum while doing so.  The researchers are willing to make an unsubstantiated generalization to the entire spectrum because it is convenient to do so.  As a parent of a son with severe autism and profound developmental delays I do not have such a luxury when it comes time for anxiety inducing activities like haircuts, shaves and dental procedures.

The DSM5 authors claim that the New Autism Spectrum Disorder is based on current research.  It is no surprise then that the autism research bias against those with severe to profound intellectual disability is also reflected in the express exclusion of those who display all of the mandatory criteria of the New Autism Spectrum Disorder but also have the misfortune to be intellectually disabled.  Like the mainstream media, like the autism research community generally, the DSM Neurodevelopmental Committee authors of the New ASD  have, for no good reason, chosen to banish the severely intellectually disabled, Autism's Outcasts.

Shame on Dr. Catherine Lord and the DSM5 Neurodevelopmental Committee. I will think of their convenience based exclusion of the intellectually disabled from autism research and the DSM5 autism disorder as I help my son shave today. 

In Autism diagnosis change questioned by York University  study Toronto Star Science & Technology Reporter Kate Allen interviews Dr. Adrienne Perry and York University undergraduate student, Azin Taheri, about a study designed by Taheri, with assistance from Dr. Perry, which had been intended to look at how the new DSM-5 criteria applied to kids already diagnosed with Autistic Disorder and PDD-NOS. No subjects with Asperger's Disorder were included in the study.