DSM5 Autism Do-Over Raises Concerns Down Under, Yeah?

Concerns have been raised in Australia over the DSM-5 Autism Do-Over, the new Autism Spectrum Disorder.  The fears echo those held by many in North America where studies have suggested a loss of autism diagnoses under the new DSM-5 diagostic criteria for autism with a possible loss of funding for autism treatment and services.

ABC (Australian Broadcasting Corporation) News reports the concerns expressed by Autism Awareness Australia:

"Vicki Gibbs from Autism Spectrum Australia's diagnostic service said Australian research has found a significant number of autistic children would fail to meet the new criteria. "What our study found was of the 120-odd children that we assessed, about 23 per cent of those children who would have got a diagnosis under the existing DSM 4, we would not have been able to give a diagnosis under DSM 5, just because they didn't have enough of the symptoms," the clinical psychologist said."

As the parent of a 16 year old son with severe autistic disorder I learned long ago that unanticipated changes can have immediate repercussions for my son.  Meltdowns have been prompted by unanticipated and, sometimes, unnecessary changes in my son's routines and expectations.

Change itself can be very disruptive. It does not appear to be a lesson learned by the autism experts on the DSM5 committees ... yeah?

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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/

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Newfoundland's Autism Wait Lists - Canada Needs a REAL National Autism Strategy

There is discouraging news out of Newfoundland where, despite a feel good commitment to improve autism services by all three parties in the Newfoundland legislature in May, wait lists are delaying diagnosis and treatment as reported at The Telegram:

"parents are still contacting the Opposition Office with stories of waitlists up to 10 months before their children can be seen by the appropriate medical professionals.

“We recently spoke to a parent of a four-year-old boy in the Codroy Valley who has been advised that there are 70 children on the waitlist ahead of his son,” Jones said. “Staff at the Janeway could not provide an appointment for this child to be assessed for autism and was instead told that he would have to wait at least 7-10 months for his first appointment.”

In New Brunswick and some other Canadian provinces psychologists can also diagnose autism. It isn't clear from the article whether only that is true in Newfoundland or whether only medical doctors can diagnose autism. If, a change to permit diagnosis of autism by psychologists would obviously reduce diagnostic delay.

Whatever the reason it is clear that Canada needs a REAL National Autism Strategy to ensure that Canadian children, whatever their province or territory of residence, receive access to early diagnosis and evidence based interventions. Funding is one issue, the frozen bureaucratic mind set is another that prevents some children from receiving early intervention in Canada.

If you want to do a small part to help Canada toward adoption of a REAL National Autism Strategy you could visit Top Priorities for Canada, register and endorse the Canada Needs a REAL National Autism Strategy option. (Preferably as your No. 1 Priority)

autism

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Grim, Chaotic Autism Reality In Ireland

The Independent paints a grim picture of autism reality in Ireland in Autism 'chaos' as one-third wait over year for diagnosis and in an editorial Grim message on autism . Figures released by Irish health authorities show that in one county there are no waiting lists while in others there are 14 months to 3 year delays in receiving diagnosis. For many Irish autistic children the early period when intervention is most effective expires on the waiting list for diagnosis.

The waiting list tragedy is not unique to autistic children in Ireland. Here in Canada there are huge discrepancies between provinces with respect to autism services. Ontario is notorious for its waiting lists for receipt of autism treatment with children left "rotting on the vine". In its editorial the Independent noted that in Ireland:

"following the release of a damning report, the Government was warned that inaction in the welfare of children will lead to a litany of social ills, including an increase in suicide and self-mutilation and family breakdown, which will cost the State dearly in the not too distant future."

So too in Canada our governments, federal and provincial, have been warned by the Senate Committee report "Pay Now or Pay Later" what the future would hold if action were not taken to provide funding and a national autism strategy to ensure that autistic children received the treatment they need. In Canada a cynical Stephen Harper led Conservative party uses pre-WWII views of Canadian federalism to justify its lack of commitment to helping autistic children across Canada.

autism

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Autism Waiting Lists In Alberta

The disparity in funding for autism treatment in Canada has, in the past, led some families with autistic children to move to oil rich Alberta, which has substantial government funding available for autistic children. But the availability of better funding has not translated into better services in all cases as children are stuck on lengthy waiting lists awaiting assessment. In Situation critical for autistic children Nicki Thomas of Sun Media reports on the critical shortage of staff and funding threatening the futures of autistic children in Edmonton. Terri Duncan of Children's Autism Services of Edmonton indicates that there are staffing shortages everywhere in Alberta and children are waiting up to a year for assessment. That year is a critically important year lost for autistic children in need of treatment:

Duncan said if autism isn't detected and treated early on, disruptive behaviour - like hitting, kicking and biting - develop from an inability to communicate effectively.

"Those behaviours can make lives really difficult and hard to deal with," she said.

"We would be able to take a lot more children off the waiting list if we had more qualified, trained staff," Duncan said.

Many credible studies and reviews of professional literature have confirmed that early ABA intervention is critically important for achieving the best possible outcome for autistic children. Lengthy waiting lists for assessment deprive autistic children of a better future.

In New Brunswick many, including me, have thought that a medical doctor is the only professional who can diagnose autism disorders. I was informed though that Psychologists can also make the initial autism diagnosis.

New Brunswick, Alberta, or anywhere else in Canada, it would seem that an important step in addressing the autism crisis, a crisis which is very real for families of children with autism, is to take steps to educate GP's in diagnosing autism. The tools being made available now by the American Academy of Pediatrics and similar organizations should be used by all doctors and psychologists to ensure autistic children receive early ABA treatment during the important early years without time being squandered.

autism

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JAMA Article Highlights AAP Autism Reports

The current edition, of the Journal of the American Medical Association , includes an article by Tracy Hampton, PhD JAMA. 2007; 298(22):2610 highlighting the recent American Academy of Pediatrics autism reports. In Reports Help Identify and Manage Autism Doctor Hampton highlights the recommendation for early, 18 and 24 month, universal screening and the early intervention, particularly early behavioral intervention.

The most significant recommendation is to screen all children at age 18 months and 24 months. "This is the first time that the Academy has recommended universal screening rather than just when a parent is concerned," said co-author Chris Plauche Johnson, MD, MEd, clinical professor of pediatrics at the University of Texas Health Science Center at San Antonio.


....

The second AAP clinical report, Management of Children With Autism Spectrum Disorders, highlights early interventions that are important for effective treatment. The report advises intervention as soon as a diagnosis is seriously considered, for at least 25 hours per week in settings with a low student-to-teacher ratio. Parents should also be included in therapy sessions.

For controlling problems such as tantrums, aggressive behaviors, and self-injury, the report recommends behavior management strategies and, in some cases, medications.

autism

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Early Early Screening Urged for Autism by US Pediatricians

The American Academy of Pediatrics will be recommending that all children be screened twice for autism by age 2 to allow maximum benefit from early intervention. The AAP points out early indicators of autism such as 4-month-olds not smiling at the sound of Mom or Dad's voice, babies who don't babble at 9 months, 1-year-olds who don't point to toys, or the loss of language or social skills at any age.

Conor was diagnosed 9 1/2 years ago at age 2. At that time, in New Brunswick, age 2 was an early diagnosis age for autism and we had no idea what autism was until Conor was diagnosed, initially with PDD-NOS, and as the severity of his autism became more obvious, with Autism Disorder. The early indicators for us were his failure to smile or show any response to peek a boo and other playful interaction. He had persistent fascination with sand, sifting it for lengthy periods of time but we did not find that alarming. His failure to develop any language skills by 12-14 months (other than saying the word "circle" on one occasion) was our most serious concern and we took him to our family doctor.

Our family doctor responded with the "boys develop language later" answer but we were not convinced. Our family doctor was one of those sometimes rare professionals who actually listened to our concerns though and he referred us to a pediatrician with some background in developmental disorders and after a series of tests Conor was diagnosed.

Unfortunately for Conor ABA intervention was not readily available in New Brunswick at that time. Most of the local Autism Society efforts were half day workshops on an eclectic mix of autism related topics. An activist group of parents emerged in response to the void in autism services in New Brunswick and we fought hard to get early intervention funded by the province, too late for our own children. But the benefit of those efforts will be felt by newly diagnosed autistic children in New Brunswick and that is a good thing - a very good thing.

The earlier an autism diagnosis is received, the better. And in New Brunswick today, although things are far from perfect, evidence based intervention is available for those parents who choose it for their child - if they get an early diagnosis.

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Autism and Unusual Facial Asymmetry Controversy

Is there any discussion of autism related topics that does NOT generate controversy?

Even recent reports of a program developed by Professor Hammond in which facial scans were reported to be of use in predicting autism and other genetic disorders has degenerated into heated controversy with Professor Hammond angry about the media coverage of his program. The controversy revolves primarily around whether the program was properly reported as being capable of diagnosing autism. The Professor himself says that statement is incorrect, his program does not detect autism. In fact, at least one report, in the Independent, made it clear that Professor Hammond was not making a diagnosis claim:

Indeed, the Independent reported him as saying at last week's press conference, "This is not diagnosis. The diagnosis is done by a clinician and a molecular geneticist doing the genetic testing."

Another paper had reported on the program somewhat differently claiming that the program could detect autism and would revolutionize autism diagnosis. Professor Hammond was very upset and canceled a scheduled BBC interview. In addition to the diagnosis dispute he was reported as having made some politically incorrect comments to a Yorkshire Post reporter that "you can spot a kid with Down's syndrome a mile away". Professor Hammond denied making such a remark which he described as insensitive. The reporter is not backing away from his report of Professor Hammond's remark.

At the end of the day a program that might be of some value in assisting in diagnosis of autism and other disorders begins its public life wrapped in controversy; an apparently unavoidable element of any public discussion of autism disorders.

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Autism and Unusual Facial Asymmetry?

Conor Doherty, Autism Disorder, Unusual Facial Asymmetry?


I have never seen this one before and, on an intuitive basis, I have a hard time accepting the idea that persons with autism display unusual facial asymmetry. But that is the claim of Professor Peter Hammond of the UCL Institute of Child Health who has developed new computer software that compares the faces of undiagnosed children with those with a diagnosed condition that also affects the development of their face, with a 90 per cent success rate. He will describe his work at the BA (British Association) Festival of Science in York on Monday. Professor Hammond's program is designed to assist diagnosis of a variety of genetic disorders including autism.

As described in Innovations Report:

The specially written software is based on dense surface modelling techniques developed at UCL and compares the child’s face to groups of individuals with known conditions and selects which syndromes look most similar. In order to do this, extensive collections of 3D face images of children and adults with the same genetic condition had to be gathered, as well as controls or individuals with no known genetic condition. Each image contains 25,000 or so points on a face surface capturing even the most subtle contours in 3D. The images are then converted to a compact form that requires only a 100 or so numeric values to represent each face in the subsequent analysis.

Once the software has narrowed down conditions with similar facial features, molecular testing can then be used to confirm the diagnosis. Testing for fewer conditions will save money, time and reduce the amount of stress the child and the parents are put under.

So far the technique has proved fruitful, Professor Hammond says: ‘The technique is currently being applied to over 30 conditions with an underlying genetic abnormality. The discriminatory capability of the approach has proven highly accurate in identifying the characteristic facial features of a variety of genetic conditions, including Cornelia de Lange, Fragile X, Noonan, Smith-Magenis and Velocardiofacial syndromes. It has identified unusual facial asymmetry in children with autism spectrum disorder reflecting known brain asymmetry and has helped to identify genes affecting facial development in Williams syndrome.’

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