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‏إظهار الرسائل ذات التسميات autism severity. إظهار كافة الرسائل
‏إظهار الرسائل ذات التسميات autism severity. إظهار كافة الرسائل

Autism Severity: Verbal Communication Doesn't Count? Crows Say Otherwise!


Photos by Harold L Doherty

One of the more irrational features in some autism discussions is the claim that being non verbal is not a significant indicator of autism severity.  Anyone who thinks that  verbal communication is not a significant factor in daily functioning is fooling themselves.   Communication is important for humans as it is for birds.  Crows are often reputed to be the smartest bird species and YouTube abounds with clever activities of crows. Anyone who has walked in areas populated by these very smart birds has heard the loud oral communication that goes on between these marvelous, high functioning creatures.  

As with crows, so too with people, oral communication is important in daily functioning and the absence of oral communication abilities is a serious deficit in daily functioning.  My son has severe autistic disorder and limited communication.  His lack of communication ability seriously limits his everyday life.



Real World Autism Functioning Levels and Conor's Hospital Adventure


Dr.Everett Chalmers Hospital, 
Fredericton, New Brunswick

One of the many controversies that mark discussions of autism disorders is the question of functioning levels.  Some high functioning persons with autism and Aspergers object to the notions of low and high functioning autism.  Those who  claim that a reference to low functioning autism is not founded in "science" do not provide any credible scientific authority for their beliefs. Nor do they usually make reference to daily real life situations of the kind experienced this week by my severely autistic, low functioning son Conor.  Conor had to undergo dental procedures at the Dr. Everett Chalmers Hospital, the "DECH" as it is often described locally,  and he did very well throughout the process. The fact though that he had to be placed under a general anesthetic in a hospital setting for procedures which most people would undergo with a local anesthetic in a conscious state in their dentist's office arises because he is severely autistic and it would be too risky to his safety and well being to have a dentist do extensive filling work while he was conscious.  

In this case the severity of his autism disorder also precluded use of another local hospital in nearby Oromocto. This meant a longer wait for the procedure than if the Oromocto option had been open to him. The Oromocto hospital was used three years ago before his growth spurt which now has him standing a very solid 6' 1" as measured during Wednesday's preparatory procedures at the hospital. The dental surgeon who performed the procedures explained that Conor because of the severity of his autism condition AND his current size was now considered too big a risk for the Oromocto hospital. 

To prepare we called in advance and spoke with hospital staff about arrangements  including a quiet, private waiting room area.  We also spoke about it with Conor well in advance making sure he knew he would not be going to school that day.  Conor loves school and a surprise cancellation for any reason such as weather can be difficult for him. To ensure as positive an outcome as possible at the DECH it was necessary to prep him for what we described as a Hospital Adventure. 

All went well, and then some, with Conor enjoying Mom and Dad's company.  He also actually seemed to enjoy the attention of the several nurses, the anesthesiologist and the dental surgeon.  I was permitted to gown (no pictures were taken of me wearing the hospital gown and hat) and accompany Conor to the OR,  hold his hand and calm him while the IV was inserted and  he drifted off to sleep.  Before that point several nurses were attending to him in the OR and he thrived on their attention barely noticing Dad standing there holding his hand. There was some blistering and swelling of his lower lip (all now cleared up) and some very mild nausea after the operation but our big strong boy walked out holding Dad's arm without the need of a wheelchair.  A trip to the Burger King drive-through and some cheese sticks and Conor was happy heading home.  Conor spent the afternoon on the living room couch ... the cozy couch ... with lots of pillows and blankets and lots and lots of attention from Mom and Dad for the rest of the day.  He loved every minute of it.

We were proud of how well Conor did  Wednesday on his Hospital Adventure.    But we don't lose sight of the underlying realities.  We love our Conor and practice reality based autism acceptance, a form of acceptance which recognizes that autism is a disorder with different functioning levels and different accommodations for daily functioning levels.  Failure to recognize those different functioning levels is nothing less than discrimination practiced by those who should know better.  Because we do recognize the realities of Conor's autism disorder, and his functioning levels, we can help him have positive outcomes as occurred this week. Because we do recognize his functioning level realities we can free him up to succeed as he did this week to our great joy.  

The next day Conor even felt good enough to tease Mom and Dad with requests for another "Hospital Adventure". As soon as we said yes to another Hospital Adventure Conor would laughingly  withdraw the request replacing it with a  request to go back to school. 

To each their own.  In our house we embrace the Joy of Conor while practicing reality based autism acceptance, acceptance which recognizes the severity of his autism disorder and the limitations it imposes on his daily functioning.  As birthday 16 approaches next February we figure we have a pretty good handle on how to help our son, how to appreciate him and the joy he brings us. Reality based autism acceptance "functions" well for us and for Conor.

Severity and Everyday Functional Impairment in the DSM5's Autism Spectrum Disorder



In his recent Nature  journal article Dr. Laurent Mottron repaints autism disorders in the image of his mentor Michelle Dawson, and the handful of high functioning autistic persons (represented by Mottron as being typical autistics) who are also providing research assistance to Mottron and his research team. Almost all media coverage of the Mottron commentary has consisted of breathless expressions of admiration for Dawson and Mottron. The media has by and large accepted the Mottron commentary without critical analysis and without reservation.  I was interviewed by Sara Boesveld of the National Post about the commentary. She was very courteous and provided an opportunity to offer some counterpoint to the Mottron comment even if my input was reduced to the following paragraph which was then, apparently, provided to Michelle Dawson for rebuttal:


"Harold Doherty is a New Brunswick labour lawyer whose son Conor is “severely autistic,” barely communicates and expresses odd behaviour. He’s sure Conor will never be able to work and he’s worried what will happen to his son should he ever die and be unable to care for him.
“You can’t talk to a parent with a severely autistic child about the ‘power of autism.’ That’s nonsense,” he said. “And what they’ve done is they’ve tried to paint autism in a way that’s not realistic across the spectrum and they’ve misled the public by doing so.”
Ms. Dawson said it’s unfair to categorize someone as low functioning or high functioning. She and Dr. Mottron believe many tests that are used to determine level of functionality are inappropriate. Less commonly used tests such as Raven’s Matrices, which doesn’t require verbal instruction to complete, can actually reveal very high intelligence levels."
I had tried during my discussion with Ms Boesveld to indicate to her that functioning levels in autism disorders are not simply related to IQ tests, that they relate to the functioning levels in the real world, in daily life. I gave as a specific example the fact that autistic children have a tendency to wander away from home and school, sometimes with tragic consequences.  That information did not appear in the National Post article. The article noted my description of my son as severely autistic in quotation marks and published Michelle Dawson's personal opinion  that it is unfair to categorize someone as low or high functioning. 
Neither Michelle Dawson, nor the National Post, appear to be aware of the description of the new Autism Spectrum Disorder in the  proposed new version of the Diagnostic and Statistic Manual of Mental Health Disorders, the DSM5, which is published by the American Psychiatric Association.  The DSM5 combines the various disorders referred to in popular discussion as the Autism Spectrum, including Autistic Disorder, PDD-NOS and Asperger's into one Autism Spectrum Disorder. Although the DSM5 creates one new Autism Spectrum Disorder it includes as a mandatory condition of receiving an Autism Spectrum Disorder diagnosis, in Condition D,  the requirement that a person's "symptoms together limit and impair everyday functioning" The DSM5 then  divides the new Autism Spectrum Disorder by severity:


I describe my son as severely autistic and low functioning because the professional assessments and diagnoses "autistic disorder, profound developmental delay" support those descriptions. I describe my son as severely autistic because of his limited communication, his limited demonstrated understanding of the world or the dangers the world presents in daily life.  I describe my son as severely autistic and low functioning because I have cared for him 24/7 over a period of almost 16 years, because his safety, security and well being depend on receiving 24/7 care and because I love him too much to hide the daily and serious functional challenges he faces in life.
I do not think it unfair to speak honestly about the severity of my son's Autistic Disorder.  Apparently the drafters of the DSM5 do not take issue with my use of such language even if the "learned" Michelle Dawson does. 

Autism Severity Differences Related To Autism Brain Structure Differences


As the father of a 15 year old son with severe autism deficits AND "profound developmental delays" I have found the insistence in some quarters of the alleged world autism community that there is no such thing as low functioning and high functioning autism, or severe and mild autism,  to be both irrational and offensive.  It is irrational and offensive to suggest that a very high functioning individual with high intelligence and excellent communication skills, capable of sitting on IACC committees and moving from one high profile media interview to the next,  has the the same, or even similar,  challenges as my 15 year old Dr. Seuss reading son who does occasionally suffer serious meltdowns in public settings or when frustrated or overwhelmed generally.  It is offensive to see my son's challenges hidden in a media closet while those barely affected, if they are affected at all, by autism portray autism as a difference not a disability.  


The media obsession with, and public perception of, high functioning autism and Asperger's success stories   as being representative of autism,  will not go away soon if at all. Public understanding of the challenges facing the severely autistic will probably remain limited for many years to come.  The just reported  Stanford/Packard autism brain imaging study though may be an important step forward  for the family members and professionals who understand and face the realities of trying to help severely autistic loved ones or patients.  


The study involved  subjects with autism excluding Asperger's and related disorders. The authors claim to have  mapped a topography of the autistic brain so clearly that they have been able to identify a relationship between severity of autism symptoms and severity of brain-structure differences. As with any small initial study replication studies involving more participants will need to be done to confirm the original findings.  Given the promise of this initial study I would be shocked if such confirming studies are not undertaken promptly.  Perhaps if the mainstream media can actually, finally see images of differences in autism brain structures they will stop ignoring differences in severity levels of those affected by autism disorders. Perhaps.


While autism diagnoses are now based entirely on clinical observations and a battery of psychiatric and educational tests, researchers have been making advances toward identifying anatomical features in the brain that would help to determine whether a person is autistic.

"The new findings give a uniquely comprehensive view of brain organization in children with autism and uncover a relationship between the severity of brain-structure differences and the severity of autism symptoms," said Vinod Menon, PhD, a professor of psychiatry and behavioral sciences and of neurology and neurological sciences, who led the research.


....

"We could discriminate between typically developing and autistic children with 92 percent accuracy on the basis of gray matter volume in the posterior cingulate cortex," said Lucina Uddin, PhD, the study's first author. Uddin is an instructor in psychiatry and behavioral sciences at Stanford.

In addition, the children with the most severe communication deficits, as measured on a standard behavioral scale for diagnosing individuals with autism, had the biggest brain structure differences. Severe impairments in social behavior and repetitive behavior also showed a trend toward association with more severe brain differences.

The above quotes are from the press release, posted in full below, for the Stanford/Packard MRI brain scan study published September 2 2011 in Biological Psychiatry,  the official journal of the Society of Biological Psychiatry.

Public release date: 2-Sep-2011
Contact: Jonathan Rabinovitz
jrabin@stanford.edu
650-724-2459
Stanford University Medical Center 

Distinct features of autistic brain revealed in novel Stanford/Packard analysis of MRI scans

STANFORD, Calif. - Researchers at the Stanford University School of Medicine and Lucile Packard Children's Hospital have used a novel method for analyzing brain-scan data to distinguish children with autism from typically developing children. Their discovery reveals that the gray matter in a network of brain regions known to affect social communication and self-related thoughts has a distinct organization in people with autism. The findings will be published online Sept. 2 in Biological Psychiatry.

While autism diagnoses are now based entirely on clinical observations and a battery of psychiatric and educational tests, researchers have been making advances toward identifying anatomical features in the brain that would help to determine whether a person is autistic.

"The new findings give a uniquely comprehensive view of brain organization in children with autism and uncover a relationship between the severity of brain-structure differences and the severity of autism symptoms," said Vinod Menon, PhD, a professor of psychiatry and behavioral sciences and of neurology and neurological sciences, who led the research.

"We are getting closer to being able to use brain-imaging technology to help in the diagnosis and treatment of individuals with autism," said child psychiatrist Antonio Hardan, MD, who is the study's other senior author and an associate professor of psychiatry and behavioral sciences at Stanford. Hardan treats patients with autism at Packard Children's.

Brain scans are not likely to completely replace traditional methods of autism diagnosis, which rely on behavioral assessments, Hardan added, but they may eventually aid diagnosis in toddlers.
Autism occurs in about one in every 110 children. It is a disabling developmental disorder that impairs a child's language skills, social interactions and the ability to sense how one is perceived by others.

The study compared MRI data from 24 autistic children aged 8 to 18 with scan data from 24 age-matched, typically developing children. The data was collected at the University of Pittsburgh.
"We jumped at the results," Menon said. "Our approach allows us to examine the structure of the autistic brain in a more meaningful manner." The new findings expand scientists' basic knowledge of the core brain deficits in autism, he added.

The analysis method, called "multivariate searchlight classification," divided the brain with a three-dimensional grid, then examined one cube of the brain at a time, and identified regions in which the pattern of gray matter volume could be used to discriminate between children with autism and typically developing children.

Instead of comparing the sizes of individual brain structures, as prior studies have done, the new analysis generated something akin to a topographical map of the entire brain. The scientists essentially mapped the autistic brain's distinct cliffs and valleys, uncovering subtle differences in the physical organization of the gray matter.

Such analysis may be a more useful approach than previous tacks. Earlier studies, for instance, suggested that people with autism may have larger brains in toddlerhood or have a large defect in one brain structure. This study took a different approach and discovered several autism-associated differences in the Default Mode Network, a set of brain structures important for social communication and self-related thoughts. Specific structures that differed included the posterior cingulate cortex, the medial prefrontal cortex and the medial temporal lobes. These findings align well with recent theoretical and functional MRI studies of the autistic brain, which also point to differences in the Default Mode Network, Menon said.

Once Menon and his team had found where the differences in autistic brains were located, they were able to use their analysis to classify whether individual children in the study had autism. They used a subset of their data to "train" the mathematical algorithm, then ran the remaining brain scans through the algorithm to classify the children.

"We could discriminate between typically developing and autistic children with 92 percent accuracy on the basis of gray matter volume in the posterior cingulate cortex," said Lucina Uddin, PhD, the study's first author. Uddin is an instructor in psychiatry and behavioral sciences at Stanford.

In addition, the children with the most severe communication deficits, as measured on a standard behavioral scale for diagnosing individuals with autism, had the biggest brain structure differences. Severe impairments in social behavior and repetitive behavior also showed a trend toward association with more severe brain differences.

Menon and his team plan to repeat the study in younger children and to extend it to larger groups of subjects. If the results are upheld, the new method offers the possibility of several applications in autism diagnosis and treatment. For instance, brain scans might eventually help distinguish autism from other behavioral disorders such as attention deficit hyperactivity disorder, or might predict whether high-risk children, such as those with autistic siblings, will go on to develop autism themselves. Brain scanning might also be able to predict what type of deficits will occur in a child with a new autism diagnosis, allowing clinicians to target their treatments to a child's predicted deficits.

"Scans would likely be used alongside clinical expertise, giving that extra hint from the brain data," Uddin said.

When such integrated assessments are possible, the researchers hope they will allow clinicians to build detailed profiles of each patient. "We hope we'll eventually be able to tell parents, 'Your child will probably respond to this treatment, or your child is unlikely to respond to that treatment,'" Hardan said. "In my mind, that's the future."


###



Other Stanford scientists who collaborated on the project were research scientist Srikanth Ryali, PhD; postdoctoral scholar Tianwen Chen, PhD; and research assistants Christina Young and Amirah Khouzam. Nancy Minshew, MD, from the University of Pittsburgh, also contributed to the project.
The research was supported by funding from the Singer Foundation, the Stanford Institute for Neuro-Innovation & Translational Neurosciences, the National Institute of Child Health & Human Development, the National Institute of Deafness & Other Communication Disorders, the National Institute of Mental Health, the National Institute of Neurological Disorders & Stroke and the National Science Foundation. Uddin was also supported by a postdoctoral fellowship from the Stanford University Autism Working Group. Additional information about the Department of Psychiatry and Behavioral Sciences, which also supported this work, is available at http://psychiatry.stanford.edu/



The Stanford University School of Medicine consistently ranks among the nation's top medical schools, integrating research, medical education, patient care and community service. For more news about the school, please visit http://mednews.stanford.edu. The medical school is part of Stanford Medicine, which includes Stanford Hospital & Clinics and Lucile Packard Children's Hospital. For information about all three, please visit http://stanfordmedicine.org/about/news.html.

Celebrating its 20th anniversary in 2011, Lucile Packard Children's Hospital is annually ranked as one of the nation's best pediatric hospitals by U.S. News & World Report, and is the only San Francisco Bay Area children's hospital with programs ranked in the U.S. News Top Ten. The 311-bed hospital is devoted to the care of children and expectant mothers, and provides pediatric and obstetric medical and surgical services in association with the Stanford University School of Medicine. Packard Children's offers patients locally, regionally and nationally a full range of health-care programs and services, from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information, visit www.lpch.org.

Discrimination by Any Other Name: Severe Autism Services and Resources Lacking, Severe Autism Research is Sparse

I have not been a big fan of the New York Times coverage of autism issues.  Specifically the NYT has downplayed  the seriousness of autism disorders. It has also downplayed the evidence based effectiveness of Applied Behavior Analysis as an autism intervention while promoting non evidence based interventions like Floortime. It comes as a pleasant surprise to read a recent NYT autism  feature in which experts, Dr. Fred Volkmar of the Yale Child Study Center and Dr. Lisa Wiesner, actually provided some unvarnished, truthful statements about severe, Low Functioning, autism realities even if that information was hidden under the feel good, High Functioning Autism focused title College-Bound and Living With Autism:

"Unfortunately not every child gets better. Sometimes the outcome seems to relate to the severity of the autism in childhood. Individuals whose disability is more profound continue, as adults, to need considerable support and help. It is unfortunately the case that for this population, services are often minimal, research is sparse and resources are lacking. The federal government has identified this as a priority area in autism work, and rightly so.

But even when we are fairly optimistic about an individual child, he or she may not do well as an adult. This is one of the reasons those of us who have been in the field for a long time are very careful about predicting the future to parents. We can only talk, in general, about what on average are good or bad prognostic factors."

( Underlining added for the benefit of those who like to "Counter" any mention of severe autism realities)

The lack of services and resources for the severely autistic is a particularly offensive form of discrimination which sees those most in need of services receive the least help from society. The exclusion of low functioning autistic persons from autism services and resources stinks whatever the excuse offered.

The exclusion of severely autistic subjects from "autism" research is something I have previously noted.  The spate of recent fMRI studies mapping the alleged "autistic brain" have in fact been restricted to subjects with High Functioning Autism only. 

It is very encouraging to see this frank acknowledgement by two autism experts in the New York Times of the shortchanging of low functioning autistic persons that has been taking place.

It is most encouraging to read that the US federal government has identified severe autism research as a high priority  area in autism work.  

Have Severity Criteria for the DSM-5's New Autism Spectrum Disorder Been Abandoned?

Have the severity criteria for Autistic Disorder, the New Autism Spectrum Disorder in the DSM-5, been dropped? 

The severity page for Autistic Disorder has encouraged readers for several months, at least since June 1 2010 when I looked, to check the DSM-5 web site regularly for updates. I checked today October 9 2010 and there are still no severity criteria recommendations posted for Autistic Disorder.  News releases are now being published for the sites selected for field trials.  
 
The rationale for creating one NASD includes  appears to acknowledge that the new spectrum should be described by reference to severity and even includes a separate page to address severity criteria:

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”.

If the severity criteria are considered important aspects of the New Autism Spectrum Disorder why are clinical field trials being instituted before severity criteria are established?  The heaviest initial criticism of the new combined Autism Spectrum Disorder came largely from those with Aspergers or family members of those with Aspergers concerned about being lumped together with Autistic Disorder and the high numbers of persons with Autistic Disorder and the "associated" feature of Intellectual Disability. Any mention of Intellectual Disability in connection with the new combined diagnosis will undoubtedly invite more hostile reaction.  Yet it would be absurd,  if not intellectually dishonest, to describe Autism Spectrum Disorder by severity without including Intellectual Disability  as one of the severity criteria.

Despite the suggestion that interested persons check the severity page of the DSM-5 web page regularly for updates there have been none to date.   But the clinical field trials for the new Autism Spectrum Disorder are going ahead and sites for the trials are being selected and announced.Why go ahead for with field trials for a diagnosis which is not yet completed with respect to necessary severity criteria?

Frankly, I am doubtful that the new combined Autism Spectrum Disorder in the DSM-5 will include any  references to severity criteria or to "associated" features like intellectual disability; a feature "associated" with approximately 75-80% of persons with the current DSM-IV Autistic Disorder diagnosis. I am afraid that the severity criteria will be dropped out of fear of political correctness challenges from  those who do not want "autism" mentioned in the same breath as intellectual disability.

Brian S. v. Delgadillo: California Appeal Court Discusses Autism, Aspergers and the DSM5

In BRIAN S. v. DELGADILLO, the Court of Appeals of California, Sixth District, in a decision filed July 28, 2010, and  reported on line at LEAGLE, dismissed an appeal by a claimant with an Aspergers Disorder diagnosis  who had been denied services by a regional center. The appeal involved a number of  evidential and procedural issues and the weighing of contrary professional psychiatric opinions.  Amongst other findings by the court was the conclusion that "autism" as used, but not defined,  in the applicable statute did not include Aspergers Disorder. The court also concluded that "autism" as used clinically refers to the diagnosis of "Autistic Disorder" in the DSM-IV-TR  but not to Aspergers Disorder.

" Finally, our interpretation of the statutory language in section 4512, subdivision (a), is consistent with that of the trial court, the ALJ, the Regional Center, and the Department of Developmental Services (DDS). We understand the concerns expressed by Claimant and the amici curiae. However, our review is defined by the record of the proceedings before the ALJ and the superior court. This record does not support a conclusion that the term autism in section 4512, subdivision (a), must encompass a spectrum of developmental disorders that includes Asperger's Disorder, nor does the pertinent legislative history of the statute compel such an interpretation. Questions concerning whether the language of the statute should be amended or expanded to reflect changing diagnostic practices, or to include a broader array of developmental disorders, should be addressed to the Legislature. (Richardson v. City of San Diego (1961) 193 Cal.App.2d 648, 650-651; Strickland v. Foster (1985) 165 Cal.App.3d 114, 119.)" ( Bold empahsis added - HLD)

The court noted that the statute did not define the term "autism" and referred to the DSM as the authoritative clinical guide in order to determine whether the "autism" in the DSM included Aspergers Disorder. After reviewing the record and the testimony of the professionals in the record the Court concluded that autism in the DSM currently refers to Autistic Disorder and does not include Aspergers Disorder:


"Claimant argues that these publications reflect recent trends showing that the DDS, through its regional center system, provides services to individuals with Autistic Spectrum Disorder, including those with Asperger's Disorder, on a case-by-case basis, provided that the individual is substantially disabled by the condition, as that term is defined in section 4512, subdivision (l). The amici curiae also rely on these studies and guidelines in pressing their claim that the current use of the term autism in the mental health community describes a range of disorders known as Autistic Spectrum Disorder, which includes both Autistic Disorder and Asperger's Disorder.

It appears from these materials that increasing numbers of people seeking services in the regional center system are presenting with various forms of Autistic Spectrum Disorder, as described in the Best Practice Guidelines, and that there is an emerging need to clarify the eligibility requirements under the statute. However, while claimant and the amici curiae have impressed upon us the importance of these issues, we must reject their arguments, for several reasons.

First, contrary to what the amici curiae argue, the materials before us by no means reflect a settled consensus in the scientific community regarding the use of the term Autistic Spectrum Disorder. We note that the authors of the Best Practice Guidelines point out that Autistic Spectrum Disorder, as used in the Guidelines, is a descriptive term, and is not meant to be a diagnosis. The authors defer to the authority of the DSM-IV-TR as the current standard, which classifies Autistic Disorder and Asperger's Disorder as two separate disorders. The amici contend that the newest edition of the DSM will reject any distinction between the two disorders and has formally recognized autism as a spectrum disorder. However, this new edition of the DSM (DSM-V) is in the preliminary draft stages only and will not be published in final form until 2013. 

Furthermore, even among those professionals who advocate using the descriptive term Autistic Spectrum Disorder, there is disagreement as to which pervasive developmental disorders should be included in the term. (See Caseload Update, p. 6, ["[b]oth nationally and within California, there is not total agreement on which diagnoses should be included as part of the spectrum."].) And there is controversy around the spectrum concept itself. (See Best Practice Guidelines, p. 147 ["the assumption that all of the conditions on the so-called `spectrum' represent some variant of autism remains a hypothesis and is not an established fact."].) In sum, resolution of what appears to be an unsettled debate in the psychiatric community as to whether autism should be re-classified as a broader Autistic Spectrum Disorder involves clinical, rather than legal, determinations.

Second, Claimant's argument that the DDS has endorsed a definition of autism to mean Autistic Spectrum Disorder, thus including Asperger's Disorder, is directly contradicted by the DDS itself, which has filed a brief in this appeal in response to our granting of Claimant's request for judicial notice. The DDS has clarified that it has "not issued any formal interpretations of `autism' under section 4512, subdivision (a)." The Best Practice Guidelines itself cautions that it offers only recommendations, and "cannot be interpreted as policy or regulation." The DDS, and the authors of the Best Practice Guidelines, continue to accept the definitions in the DSM-IV-TR as current authority. The Caseload Update, prepared by the DDS, equates autism with Autistic Disorder and does not include in its data "people with other disorders on the spectrum," such as Asperger's Disorder. It provides that "[f]or the purpose of this report, the term `autism' refers only to the condition characterized by the [DDS] as `autistic disorder' [as defined in the DSM-IV-TR]." The position of the DDS is clearly stated in its brief: "`[A]utism' under the Lanterman Act should be interpreted to mean `Autistic Disorder' as defined under the DSM-IV-TR, and accordingly should not include Asperger's."[ 6 ]"

The court while acknowledging the disabling challenges faced by many with Aspergers Disorder also offered the opinion that  the deficits afflicting those with Autistic Disorder are more severe:

"It is argued that individuals who have been diagnosed with Autistic Disorder and those with Asperger's Disorder may be equally disabled and similarly in need of services. Thus, there is no reasonable basis to find some individuals eligible for services and to exclude others, except on a case-by-case assessment of their level of disability. We understand, and are sympathetic with, the argument that services should be available to all individuals with substantial disabilities. However, the Legislature has specifically limited the categories eligible for services under the Lanterman Act. And Autistic Disorder and Asperger's Disorder, although they have characteristics in common, are presently distinguished by the diagnostic criteria set forth in the DSM-IV-TR. With Austistic Disorder there are more severe communication deficits not found in people with Asperger's Disorder. With Autistic Disorder diagnostic symptoms are obvious in early years, and may include mental retardation. Those with Asperger's Disorder exhibit no cognitive or language delays. These differences describe a greater severity of deficits in people with Autistic Disorder and provide a reasonable basis for the regional center system serving that population. And, as the record shows, people with Asperger's Disorder are served through the mental health system."
As noted above, the court noted some important distinctions between Autistic Disorder and Aspergers Disorder including diagnostic differences related to severe communication deficits in persons with Aspergers Disorder which are not present in Aspergers, the fact that Autistic Disorder symptoms are obvious in early years, the fact that mental retardation may be present in Autistic Disorder  and the fact that those with Aspergers Disorder do not show cognitive or language delays.

The California appeal court in this case expressly stated that persons with Aspergers can also suffer from deficits but they are different in kind and severity from those which accompany Autistic Disorder. I have made this observation many times on this site.  Given that the DSM is the primary clinical tool in North America for assisting in the diagnosis of what are described as mental disorders which impact on the functioning abilities of those with various DSM diagnoses why on earth are the DSM5 committees combining the two together into one New Autism Spectrum Disorder? How does this obscuring of important differences in functioning  areas and severity levels in the authoritative diagnostic manual  help persons with either disorder?

New Autism Spectrum Disorder and Severity: DSM-5 Puts the Cart Before the Horse


The decision has already been made by the American Psychiatric Association's DSM revision team to rename and revise the current Pervasive Development Disorders in the DSM-IV  by combining them into one Autistic Disorder 299.0

The DSM-5.org site presents a rationale for the changes including the observation that "A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to “cleave meatloaf at the joints”." I am not that big on meatloaf so they have lost me with that image.

The New Autism Spectrum Disorder (NASD) rationale also states that currently :

  •  ... distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.
  • Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.)
As the father of a boy with Autistic Disorder with profound developmental delays, a boy who in ordinary language would be described as severely autistic and affected in every single aspect of his existence by a low functioning level I understand the severity aspect of the rationale for the New Autism Spectrum Disorder. I  tire of listening to the barely autistic engineers, lawyers, writers, university students,  successful business persons, Washington political circle navigators and IMFAR  socialites who are interviewed daily by the main stream  media and tell the world what it means to "be autistic".

Despite my previously expressed concerns (1, 2)  about the New Autism Spectrum Disorder I can see the logic in one"spectrum" disorder as long as the spectrum is clearly differentiated, as the DSM-5 site suggests, based on severity.   Unfortunately the DSM-5 people have committed to the New Autism Spectrum Disorder without having clear criteria for differentiating severity categories and criteria in the NASD, or at least without having communicated severity criteria to the public including "autism parents" like this Dad.

I don't know much about cleaving meatloaf at the joints but it seems to me that  with the New Autism Spectrum Disorder the DSM-5 team has put the  cart before the horse by committing to the creation of a single autism spectrum disorder,  the New Autism Spectrum Disorder, which recognizes distinctions based on severity,  without first clearly defining severity categories or criteria.

Until comprehensible severity categories and criteria are developed this father of a boy diagnosed with the current Autistic Disorder and assessed with profound developmental delays says NEIGH to the New Autism Spectrum Disorder.

Autism Severity

The DSM V committees drafting revisions to the manual are considering distinguishing between autism disorders based on severity or level of functioning. Some autism "self" advocates have long complained about distinguishing between functioning levels of autism disorders based on functioning labels - HFA, high functioning autism, or LFA, low functioning autism. Some object to the division of autism disorders according to severity.

The DSM-IV already implicitly recognizes these differences by specifying with respect to Aspergers Disorder that:

D. 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).

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.

Language, cognitive development, age-appropriate self-help skills, adaptive behavior (other than in social interaction and childhood curiosity about the environment are all basic elements of functioning in the "environment" .... in the real world. By definition persons with Aspergers Disorder diagnoses do not lack these important elements of real life functioning ability. The criteria for Autistic Disorder by contrast is based in part on the presence of some or all of these components of real life functioning. The persons who suffer from Autistic Disorder are by definition more severely affected by autism deficits than persons with Aspergers Disorder.

My son Conor is severely autistic. That is a fact of life with which we have to deal every minute of every day. He does not possess the communication skills or understanding of the world displayed by Michelle Dawson, Amanda Baggs or Ari Ne'eman. These people can communicate with the world and demonstrate intellectual skills and understanding of the world far beyond what can be imagined for my son. It is silly, just plain silly, and nothing more than that, to pretend that there are not significant differences in functioning levels and understanding between these three examples of high functioning autistic persons who have spent much time in front of television cameras articulating their views of autism disorders and the world and my 13 year old son who reads Dr. Seuss and can not, for his own safety, be left unattended.

As I understand from the Internet Ms Baggs was either at, or about to enter, a college for gifted youth at a similar age. Ms Dawson is a person who, in addition to being an excellent letter carrier in the very challenging world of Canada Post, was able to become an autism researcher, make representation to the Supreme Court of Canada (where she opposed government provision of ABA treatment to autistic children) and to a Canadian Senate committee examining autism treatment and funding issues. Ari Ne'eman is the head of an organization based in Washington DC who regularly appears before cameras, and meets with political and public bodies, declaring on behalf of all autistic persons, including presumably my son and other autistic persons like Jake Crosby and Jonathan Mitchell, that "they", autistics, do not want to be cured.

As a parent of a much more severely affected son with autistic disorder I am tired of the silly attempts to deny the obvious differences between those who can function well like Dawson and Ne'eman and those like my son who require 24 hour supervision. I have visited adult autistic persons living in psychiatric facilities in New Brunswick who can not function in the real world AT ALL let alone make representations to judicial, political and legal institutions or engage in autism research or advocacy.

My son can not speak to the world. But Ari Ne'eman, Amanda Baggs and Michelle Dawson do not speak for him. They do not share his realities. They are not affected by autistic disorder as he is and they show no real awareness of the very real differences between his reality and theirs in their sweeping generalizations about autism and what "autistics" want.

The DSM V committee attempt to distinguish between levels of autism severity or functioning is a step in the right direction. Look for a determined effort from Mr Ne'eman, Ms Baggs and Ms Dawson, and their followers, to oppose that direction. After all, if the obvious differences between high functioning persons with autism and those, like my son, who do not enjoy their gifts, are expressly acknowledged, the self appointed "self" advocates ability to speak on behalf of those much less fortunate autistic persons would be seriously diminished in the eyes of the public and more importantly in the eyes of reporters from the CBC, CNN, the New Yorker Magazine and Newsweek who cater to their wishes.

Focusing on differences in autism severity would, however, bring needed attention to the challenges faced by the severely autistic some of who currently live out their lives in institutions. A couple of years ago a middle aged autistic woman in New York was regularly abused by staff but could not communicate with the world to tell of the abuse. The matter came to light because of a conscientious staff member and video recordings which captured some of the abuse. The plight of that woman, her life challenges and realities, are much different that those of the high functioning autistic media stars who barely acknowledge the existence of the severely autistic and do not display any understanding of their realities.

If the DSM V does differentiate between autism disorders based on functioning levels, or severity levels, it will be a much needed step toward helping those severely autistic who can not speak for themselves. It will help to ensure that their needs, so different than those of media trotting, high functioning "self" advocates will be met. It will be a much needed step in the right direction.

It is time for the low functioning, severely autistic, to be acknowledged and their needs addressed.




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