EEG Day Yesterday Went Very Well: Conor Was Outstanding!

Conor's EEG exam had been scheduled for yesterday as a result of his scary Grand Mal seizure a few weeks ago.  (Not that I am superstitious but I did wear my Tom Brady Patriots jersey to the EEG for good luck) The EEG techs indicated it would take time to get set up: about 20 minutes.  They hoped to get at least 45 minutes of readings after that.  With Conor's autistic disorder, profound developmental delays and sensory issues I questioned in my own mind whether they would be able to get 45 minutes before Conor started removing the head wrap with the connecting wires.  

My questions were answered positively when Conor provided approximately 70 minutes of readings without breaking a sweat! His pediatrician had consulted the neurologist involved and they decided on the best medication for Conor to take that would allow him to be drowsy (and calm) while interfering minimally with the readings.  His pediatrician, Dr. Messenger, provided clear instructions to me to give Conor his medication one hour before   the scheduled start time. Perhaps because of his own procedures, perhaps because we have met and discussed Conor and autism on several occasions over the years, he politely made sure Dad got the message and repeated the instructions twice.   The technicians and staff at the DECH EEG section were also outstanding.  We completed a service survey on leaving and rated our experience 10 out of 10! Conor's mom Heather also contributed to the successful outcome. She snuggled on to the hospital bed with Conor and stayed beside him throughout the process.

The star of the day though was Conor himself.  The techs allowed me to see his face on one of their visual screens. I could only see his eyes and above.   His eyes were open and he was calm throughout 70 minutes.  When it was over he left the hospital on his own steam holding our arms for support in the slippery snow storm conditions outside the hospital as we left.  We went through a Burger King drive through on the way home and rewarded Conor with a BK burger.  (Dad got one too!) Conor was quiet but content until he went to sleep at his regular time last night.

Small things can be a challenge with Conor. That is reality, Conor's autism reality, every day. Yesterday a big challenge, an EEG exam, was no problem for my buddy who provided 70 minutes of readings.   Meanwhile, last evening, Tom Brady led the Patriots to a thrashing of the upstart Houston Texans. Brady was excellent. Conor was our MVP though. 

Autism Researcher Bias and the Targeted Exclusion of Intellectually Disabled in the DSM-5 Autism Do-Over

Autism researcher bias exists and its effect, when the DSM-5 takes effect in 2013,  will further the redefinition of autism as social awkwardness and the exclusion from the autism spectrum of persons with severe intellectual disabilities.  

David Kupfer, M.D., chair of the DSM-5 Task Force,  has stated that "the proposed ASD criteria are backed by the scientific evidence". Dr. Kupfer was not addressing the exclusion of the persons with autism and severe intellectual disabilities when he made that statement.  He was responding to the criticisms that the new Autism Spectrum Disorder would target high functioning autistics for exclusion. Scientific evidence in respect of autism disorders is found  by autism researchers though and autism researchers are clearly biased  against inclusion of low functioning, intellectually disabled persons with autism in the their research studies.  The DSM-5 New Autism Spectrum Disorder, based on that same research, reflects the researchers' bias against inclusion of intellectually disabled persons and is intentionally designed as was confessed by Dr. Catherine Lord, to remove persons with classic autistic disorder and intellectual disability from future autism diagnoses.

I do not think the DSM-5  committee responsible for the New Autism Spectrum Disorder will yield to pressure to  revisit the new autism diagnostic criteria. I attended IMFAR 2012 in Toronto and specifically attended two presentations by Dr. Susan Swedo of the committee responsible for the new autism definition.  She was visibly upset over the criticisms received from those concerned with the possible exclusion of very high functioning persons from the autism spectrum but she dug in her heels. She did confirm, in response to my questions after the second presentation, that some intellectually disabled will not be diagnosed with autism under the DSM-5 definition who might have received an autism diagnosis under the DSM-IV.  If there is any change it will come on the high functioning end and will tend to include more high functioning autistic persons, the subjects of much interest by NYT reporter Amy Harmon and others in the Mainstream Media. At the same time there is no significant pressure on the DSM-5 committee members to reconsider the express exclusion of the intellectually disabled in mandatory criterion A of the DSM-5 Autism Spectrum Disorder.  

CDC autism expert Dr. Marshalynn Yeargin-Allsopp stated in an interview with the  Canadian Medical Association Journal that the vast majority of persons with classic autism, approximately 80%, also had intellectual disabilities prior to the DSM-IV addition of Aspergers which effectively watered that figure down to approximately 40%:

"Prior to the 1980s, only those exhibiting autism’s classic symptoms (communication and behavioural difficulties and a lack of social interaction) were considered affected. Those symptoms remain the foundation of “classic” autism.  But the autism umbrella has since widened to include milder forms, says Dr. Marshalyn Yeargin-Allsopp, a medical epidemiologist at the Centers

for Disease Control and Prevention.

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."


The DSM-IV effectively expanded the definition of what constituted autism and, in the process, reduced the presence of the intellectually disabled on the autism spectrum from vast majority status to minority status. Since then the Mainstream Media regularly does a feature on the accomplishments of Dr. Temple Grandin and other very talented high functioning persons with autism/Aspergers.  Michelle Dawson and Ari Ne'eman who function very well in complex and challenging legal, political and media proceedings command attention and help redefine autism from a disorder with significant daily living impairments to a different, superior way of thinking. Meanwhile those most severely affected by classic autism disorders, particularly the vast majority with intellectual disability, remain largely invisible,  marginalized by Neurodiversity identity ideology which disowns their presence on the autism spectrum and by media obsession with feel good stories including movies and television shows featuring brilliant characters with Aspergers.

The primary agent in the final push to remove those with intellectual disability from the autism spectrum is the bias of autism researchers.  Bias is certainly a factor in autism research as noted by High Functioning Autism expert and anti-ABA activist Dr. Laurent Mottron in his Nature commentary in which he paid lip service to the quaint notion of autism as a disability affecting some but then  displayed his own bias by redefining autism in terms of the autistic researchers who work with him:

"I am a researcher, clinician and lab director concentrating on the cognitive neuroscience of autism. Eight autistic people have been associated with my group: four research assistants, three students and one researcher. Their roles have not been limited to sharing their life experiences or performing mindless data entry. They are there because of their intellectual and personal qualities. I believe that they contribute to science because of their autism, not in spite of it. Everyone knows stories of autistics with extraordinary savant abilities, such as Stephen Wiltshire. None of my lab members is a savant. They are ‘ordinary’ autistics, many of whom, on average, outperform non-autistics in a range of tasks, including measures of intelligence." (Underlining and bold highlighting  added - HLD)


Mottron also noted autism researcher bias in his Nature commentary:

"Even researchers who study autism can display a negative bias against people

with the condition. For instance, researchers performing fMRI scans systematically report changes in the activation of some brain regions during a task as indicative of a deficit in the autistic group, rather than of their alternative, yet sometimes successful, brain organization."

Dr. Mottron's own bias is on ironic display in the above quote when he references fMRI scan result interpretation as indicative of autism researcher bias.  He fails to mention that such scan studies routinely exclude low functioning, severely autistic subjects because of the difficulties in managing the behaviors of such subjects during the examination process.  This bias against the low functioning, severely autistic would include the vast majority of persons with classic autism and intellectual disability.  Mottron, who has written many published journal articles on persons with High Functioning Autism and Aspergers, has demonstrated his own bias against those with autism and intellectual disability by arguing with flimsy, if any, evidence that intellectual disability does not exist in autism. 


A recent autism study employed lower functioning autistic subjects.  In A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typical controls – a large case control study, Frank H. Duffy and   Heidelise Als used classic autism subjects because of the tendency of autism studies to exclude them as reported in the study press release:

"Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications. 

"We studied the typical autistic child seeing a behavioral specialist – children who typically don't cooperate well with EEGs and are very hard to study," says Duffy. "No one has extensively studied large samples of these children with EEGs, in part because of the difficulty of getting reliable EEG recordings from them." 

Autism research has generally tended to exclude low functioning autistic participants as was acknowledged by  an article in the Financial Times about the DSM-5's new autism spectrum diagnostic criteria Dr Craig Erickson, chief, Christian Sarkine Autism Treatment Center, Indiana University School of Medicine noted the presence of  a high functioning autism bias in autism research:

"Erickson noted that there is often a bias in clinical trials, where high-functioning patients are typically enrolled as they are more readily able to tolerate routine procedures such as blood tests part of clinical trials. Further, it is easier to make improvements in less-impaired children, Elliott said, noting the Phase II Kuvan in autism trial included children with IQs in the 50-60 range as well as Asberger patients."

Dr. Catherine Lord of the DSM5 committee that has crafted the New Autism Spectrum Disorder has also noted the tendency of autism research to exclude those with multiple disabilities and moderate and severe intellectual disability 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 APA has stated in its form letter reply to those who submitted concerns to them about the new Autism Spectrum Disorder criteria that the new definition is based on existing research:

"The [DSM-5 Autism Spectrum Disorder] proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders."

Notwithstanding the known and acknowledged distortion of autism research because of researcher tendency to exclude, for reasons of convenience, autistic participants with intellectual disabilities the DSM-5 work group is relying on that same research to justify the intentional (as confessed by Dr. Catherine Lord and confirmed by Dr. Susan Swedo at IMFAR 2012) exclusion from future DSM-5 autism diagnoses of persons with intellectual disabilities. 

As the father of a severely autistic 16 year old son with "profound developmental delays" I do not have the luxury of excluding my son from the realities of haircuts in busy hair salons, dental and other medical procedures and countless other challenges of daily life. I have to deal with and face those realities in my son's best interests.

The conduct of autism researchers in excluding low functioning autistic participants with intellectual disabilities from autism research and, inevitably from the DSM-5 era of autism diagnoses, is not justified by their own professional requirements either.  An Italian study, instead of trying to cleave meatloaf at the joints by removing the intellectually disabled from the autism spectrum, took the  opposite approach and having found a close connection between ID and autism disorders recommended future research into that connection. In Autism and intellectual disability: a study of prevalence on a sample of the Italian population. La Malfa G, et al concluded  that their study:

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

The DSM-5 team, like so many autism researchers on whose work they based their new Autism Spectrum Disorder, have chosen to ignore the recommendation from the Italian study and pretend that no relationship exists between ID and  autism disorders.  They have betrayed the most severely affected by autism disorders those with autism and intellectual disability.

Major Autism Research Breakthrough: EEG Study Involved Classic Low Functioning Autism Subjects

Two thumbs up for Frank H. Duffy, M.D., of the Department of Neurology, and Heidelise Als, Ph.D., of the Department of Psychiatry at Boston Children's Hospital,  for conducting an autism study involving "classic" lower functioning autism subjects who have been excluded too often from autism research 

resulting in skewed autism research findings

A major autism research breakthrough has been reported in the Science Daily/PR newswire article Computer analysis of EEG patterns suggests a potential diagnostic test for autism. The article is copied in full following my commentary. 


The study is available online: A stable pattern of EEG spectral coherence distinguishes children with autism from neuro-typical controls – a large case control study.

The central finding of the study is reported to be the possibility that the researchers have found reliable EEG patterns to reliably distinguish between autistic children and neurotypical children as young as t wo years old.  Another radical aspect of this study though is that it actually used "classic" low functioning autism subjects. IMHO this in itself is a major breakthrough in "autism" research which has tended to exclude low functioning, classic autistic subjects.  I have highlighted in bold the comments by study researcher Frank H. Duffy which indicate the participation of "classic" autism subjects and the rationale for excluding high functioning autism and Aspergers subjects who tend to dominate (and skew) the existing literature because they are relatively easy to study.

BOSTON, June 25, 2012 /PRNewswire-USNewswire/ -- Widely available EEG testing can distinguish children with autism from neurotypical children as early as age 2, finds a study from Boston Children's Hospital. 

The study is the largest, most rigorous study to date to investigate EEGs as a potential diagnostic tool for autism, and offers hope for an earlier, more definitive test. 

Researchers Frank H. Duffy, M.D., of the Department of Neurology, and Heidelise Als, Ph.D., of the Department of Psychiatry at Boston Children's Hospital, compared raw EEG data from 430 children with autism and 554 control subjects, ages 2 to 12, and found that those with autism had consistent EEG patterns indicating altered connectivity between brain regions – generally, reduced connectivity as compared with controls. 

While altered connectivity occurred throughout the brain in the children with autism, the left-hemisphere language areas stood out, showing reduced connectivity as compared with neurotypical children, consistent with neuroimaging research. Findings were published June 26 in the online open-access journal BMC Medicine. 

Duffy and Als focused on children with "classic" autism who had been referred for EEGs by neurologists, psychiatrists or developmental pediatricians to rule out seizure disorders. Those with diagnosed seizure disorders were excluded, as were children with Asperger's syndrome and "high functioning" autism, who tend to dominate (and skew) the existing literature because they are relatively easy to study. The researchers also excluded children with genetic syndromes linked to autism (such as Fragile X or Rett syndrome), children being treated for other major illnesses, those with sensory disorders like blindness and deafness and those taking medications. 

"We studied the typical autistic child seeing a behavioral specialist – children who typically don't cooperate well with EEGs and are very hard to study," says Duffy. "No one has extensively studied large samples of these children with EEGs, in part because of the difficulty of getting reliable EEG recordings from them." 

The researchers used techniques developed at Boston Children's Hospital to get clean waking EEG recordings from children with autism, such as allowing them to take breaks. They used computer algorithms to adjust for the children's body and eye movements and muscle activity, which can throw off EEG readings. 

To measure connectivity in the brain, Duffy and Als compared EEG readings from multiple electrodes placed on the children's scalps, and quantified the degree to which any two given EEG signals—in the form of waves—are synchronized, known as coherence. If two or more waves rise and fall together over time, it indicates that those brain regions are tightly connected. (Duffy likens coherence to two people singing "Mary Had a Little Lamb" together. If they can see and hear each other, they are more likely to sing in synchrony -- so their coherence is high.) 

In all, using computational techniques, the researchers generated coherence readings for more than 4,000 unique combinations of electrode signals, and looked for the ones that seemed to vary the most from child to child. From these, they identified 33 coherence "factors" that consistently distinguished the children with autism from the controls, across all age groups (2 to 4, 4 to 6, and 6 to 12 years). 

Duffy and Als repeated their analysis 10 times, splitting their study population in half different ways and using half to identify the factors, and the other half to test and validate them. Each time, the classification scheme was validated. 

"These factors allowed us to make a discriminatory rule that was highly significant and highly replicable," says Duffy. "It didn't take anything more than an EEG—the rest was computational. Our choice of variables was completely unbiased—the data told us what to do." 

The researchers believe the findings could be the basis for a future objective diagnostic test of autism, particularly at younger ages when behavior-based measures are unreliable. Their most immediate goal is to repeat their study in children with Asperger's syndrome and see if its EEG patterns are similar to or different from autism. They also plan to evaluate children whose autism is associated with conditions such as tuberous sclerosis, Fragile X syndrome and extremely premature birth. 

The study findings complement those of another recent study at Boston Children's, led by informatics researcher William Bosl, Ph.D., and Charles A. Nelson, Ph.D., research director of the Developmental Medicine Center. That study looked at the complexity of EEG signals, another indirect measure of brain connectivity, and identified patterns that distinguished infants at increased risk for autism (having affected siblings) from controls. 

The current study was funded by the U.S. Department of Education, the National Institute of Child Health and Development, the Weil Memorial Charitable Foundation and the Irving Harris Foundation. 

Boston Children's Hospital is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Boston Children's research community. Founded as a 20-bed hospital for children, Boston Children's today is a 395 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Boston Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Boston Children's, visit: http://vectorblog.org. 

CONTACT: 

Meghan Weber 

Boston Children's Hospital 

617-919-3110 

meghan.weber@childrens.harvard.edu 

SOURCE Boston Children's Hospital 

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RELATED LINKS 

http://www.childrenshospital.org/

If Autism Is A Brain Disorder, Surely We Need To Look At The Brain?

Dr. Aditi Shankardass: If it is a brain disorder, surely we need to look at the brain!

Autism is one of the developmental disorders described as a brain based disorder in the presentation by Dr. Aditi Shankardass in which she makes the observation that if developmental disorders are brain disorders shouldn't we look at the brain in order to properly understand, diagnose and treat them?

"Despite the fact that each and every one of these disorders originates in the brain most of these disorders are diagnosed solely on the basis of observable behavior but diagnosing a brain disorder without actually looking at the brain is analogous to treating a patient with a heart problem based on their physical symptoms without even doing an EEG or a chest X-ray to look at the heart. It seems so intuitively to diagnose and treat a brain disorder accurately it would be necessary to look at the brain directly. Looking at behaviour alone can miss a vital piece of the puzzle and provide an incomplete or even a misleading picture of the child’s problems."

In addition to the EEG based program described by Dr. Shankardass the recent Stanford/Packard  MRI based study indicates that it may be possible to provide topographical imaging of brains  that can distinguish between the brains of persons with autistic disorder and those who are not autistic. The study authors also indicate that more severe autism brain differences are related to more severe autism.

If autism is a brain disorder, surely we need to look at the brain?

Autism and the Role of Neurologists

ABC News has an interesting online feature The Answers to Autism May Be Inside the Mind in which neurologist Dr. Fernando Miranda argues that neurologists should be more involved in the diagnosis and treatment of autism disorders. The feature includes parent input, including an interview with Sarah Kavanaugh, whose son had been diagnosed with an autism disorder but who sought Dr. Miranda's assistance. An MRI disclosed that Beckett's corpus colusum, "the brain freeway that connects the two hemispheres, was a bit thin. That is crucial in any sort of diagnosis because it can affect language."

An EEG indicated signs of seizures which were not necessarily visible to observers. After more tests and a sleep EEG it was determined that her son did not in fact have an autism disorder. He " has a version of Landau Kleffner syndrome, a brain seizure disorder that can masquerade as autism." Since that diagnosis Kavanaugh's son has benefited substantially from anti-seizure medication.

The ABC feature also points out that it is not clear that all children would benefit from anti-seizure medication or that anti-seizure medication is always appropriate in cases where there are indications of limited seizure activity. Research is not currently advanced enough to indicate which children with seizure like symptoms might benefit from such medication. The drugs, in the view of some doctors, can be harmful. There is a risk that such medications could become over prescribed as some feel has happened with ADHD medications.

The children featured in this article benefited from the intervention of neurologists and ABC has done a service to children with autism and autism like conditions by highlighting that fact.

autism