DSM5 & ABAI Autism Conference in Portland

Autism News

Now that the DSM5 re-definition of Autism Spectrum Disorders (excluding Asperger disorder and PDD-NOS) is a done deal, the question is what will this mean for those previously diagnosed with one of these conditions under DSMIV criteria and for individuals in the future who would have satisfied DSMIV criteria but who will not meet the DSM5 criteria?.  Dr. Catherine Lord who was one of the main forces behind these changes has attempted to reassure the field that these changes will not disenfranchise most people with Asperger disorder or PDD-NOS.  As in most things in life, the devil is in the details.  While Dr. Lord’s data suggest there will be few people with Asperger disorder excluded using the new criteria, several other studies by highly credible researchers indicate a substantial number of children with Asperger disorder and PDD-NOS will, in fact, no longer meet the DSM5 autism spectrum disorder criteria.  Insurance companies and Medicaid looking to save money would now be able to deny reimbursement for services to such people since they would no longer be considered ot have an ASD. 

Moreover, public schools may argue they do not need to provide special education services to such children.   My question is, how long will the American Psychiatric Association take to decide they made a mistake with the new criteria?  Are they going to wait five years during which time many thousands of children will be denied services?   Anyone who has worked with individuals with Asperger disorder can tell you most children with this condition require additional supports and treatment and to deny it is ethically troubling.

Another less obvious implication is that studies of treatment outcomes will be limited to more severely affected individuals, since it appears higher functioning persons with better prognoses will no longer be identified as having an ASD.  The net result is that treatments such as Early Intensive Behavioral Intervention may suddenly appear less effective since the results will be based on a more severely affected population.  That could have the pernicious effect of making it easier for third party payers to deny coverage of the cost of EIBI for individuals with autism.  I doubt that is what Dr. Lord and her DSM5 colleagues intended but it is very likely to be the effect nonetheless.

Lord, CE and Mahjouri, S. (2012) What the DSM-5 Portends for Research, Diagnosis, and Treatment of Autism Spectrum Disorders. Current Psychiatry Rep. 15: 739-47.

McPartland, JC, Reichow, B and Volkmar, FR (2012) Sensitivity and Specificity of Proposed DSM-5 Diagnostic Criteria for Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry. 51: 368-83.

Matson, JL et.al. (2012) DSM-IV vs DSM-5 diagnostic criteria for toddlers with autism. Developmental Neurorehabilitation. 15: 185-90

Quick Tips

My wife Anneke Thompson and daughter Andrea Thompson are both special education teachers with years of experience working with kids with autism, and I have worked in a consulting capacity with public schools for many years.  In reality is many public school programs have insufficient trained personnel and resources to adequately meet the needs of students with autism spectrum disorders.  In working with schools, try to find out what kind of specific training your child’s teacher has in autism.  When training opportunities arise in your area, talk with him/her about the upcoming event and encourage them to attend, especially if it s practical workshop on behavioral techniques for the classroom.  If possible, attend the workshop with your child’s teacher so you have an opportunity to partner with the teacher rather than be seen as a parent who is just making unreasonable demands.  While you can’t legally pay the registration, ask the teacher if it would be OK to mention it to her/his principal, to put in a plug for it.  Always better to find a way to work together than find yourself in conflict.  It’s always easier to settle differences with someone you get to know personally than simply to see them as an obstacle. Think of it as your own personal “beer summit.”

Random Thoughts

If the eighteenth-century was the Age of Reason that followed the mysticism and superstition of the Middle Ages, 21^st century America, at least for a slice of the US, has lapsed into a New Dark Ages that rejects objective scientific evidence and rational thought. They haven’t resumed witch trials and burning at the stake quite yet, but they have, indeed, purged their ranks of reasonable women and men not willing to participate in their madness. I have written elsewhere pointing out that there is no actual fiscal crisis. Nothing terrible is about to happen with the US economy unless the House Republicans make it happen.  The only crisis is one created by the House Republicans refusing to increase the national debut limit, though Republicans in the House voted to increase the debt ceiling 19 times under George W. Bush to the tune of $4 trillion. A substantial number of Tea Party Republicans are willing to allow the country to fall into another recession, even a more serious and prolonged depression, in order to avoid more equitable national tax policy. They appear to be on a religious crusade, not taking part in pragmatic governance. The disastrous consequences of slashing Medicare, Medicaid and Social Security funding and public school funding for people with disabilities, including children, adolescents and adults with autism spectrum disorders would be unconscionable and indefensible.  How many lives must be damaged to prove their point?

What I’m Up To.

I’ve spent the past few days participating in the semi-annual meeting of the Association for Behavior Analysis International Executive Council in Minneapolis, as a Member at Large.  Much of on day’s meeting was devoted to planning upcoming conferences. ABAI is the largest organization of behavior analysts in the world and includes around 8000 members from all US states and 1200 in other countries.  A substantial aspect of ABAI’s activities include promoting research, teaching and practices to improve the lives of individuals with autism spectrum disorders.   Two upcoming ABAI conferences are especially relevant. 

The 7^th Annual ABAI Autism Conference Novel Autism Solutions for Practitioners, Parents, and Researchers
will be convened, Friday, January 25–Sunday, January 27, 2013
Portland Marriott Downtown Waterfront Hotel, Portland, OR.  http://www.abainternational.org/Events/autconf2013/index.asp The first day includes two workshops intended for practitioners focusing on strategies for promoting parent involvement in their child’s services.  Day 2 will be devoted to science-to-practice mainly for and practitioners, college faculty and researchers.  The third day is intended for parents addressing common issues of concern, such as sleep and feeding challenges and including school to adult transition. 

The other upcoming meeting is the ABAI 39^th Annual Conference to be held in Minneapolis, May 24-28^th at the Minneapolis Convention Center in downtown Minneapolis.  A large portion of the program is devoted to autism presentations, workshops and related events.    If you have questions about registration for either conference check with the ABAI office at mail@abainternational.org   I’d be glad to hear from you if you have questions about the content and speakers at the Autism Conference in Portland, which I’m coordinating.

http://www.abainternational.org/Events/conv2013/index.asp

Quotes of the Week by Alfred Bernard Nobel (21 Oct 1833 - 10 Dec 1896), Swedish chemist and philanthropist whose fortune has been used to fund the Nobel Prizes.

“I am not aware that I have deserved any notoriey, and I have no taste for its buzz.”

In Robert Shaplen, 'Annals Of Science: Adventures of a Pacifist', The New Yorker (22 Mar 1958),

“The capital (referring to his profits from sale of dynamite and other munitions) ... shall form a fund, the interest of which shall be distributed annually as prizes to those persons who shall have rendered humanity the best services during the past year. ... One-fifth to the person having made the most important discovery or invention in the science of physics, one-fifth to the person who has made the most eminent discovery or improvement in chemistry, one-fifth to the one having made the most important discovery with regard to physiology or medicine, one-fifth to the person who has produced the most distinguished idealistic work of literature, and one-fifth to the person who has worked the most or best for advancing the fraternization of all nations and for abolishing or diminishing the standing armies as well as for the forming or propagation of committees of peace. [From will (27 Nov 1895), in which he established the Nobel Prizes, as translated in U.S. Dept. of Commerce, Consular Reports, Issues 156-159 (1897), 331.]

Autism Genes, Finickiness & Rat Whiskers

Autism News

For several years studies have shown the gene with the peculiar name, Shank3, is associated with autism, but exactly how it is related has been unclear.  A new study from the University of Auckland, New Zealand by Dr. Johanna Montgomery shows that a mutation of that gene impairs transmission of signals between nerve cells.  Mutations are accidental changes in the DNA sequence of a nerve cell. These random sequences cause sudden and spontaneous changes in the cell's DNA. Mutations can be caused by various factors such as radiation, viruses, or certain chemicals. The cause in this case is unknown but the subject of intense research. The proteins in question are found on the nerve cell that receives the neurochemical signals, called post-synaptic proteins.  Dr. Montgomery and colleagues found that Shank3 regulates the function of a specific type of neurochemical necessary for nerve transmission (glutamate) and alters the structure of the portions of the nerve cell where synapses occur (called dendritic spines). These findings suggests it may be possible to discover what is causing most of these mutations and possibly prevent them, and secondarily, it may be possible to devise a therapy to undo some of the consequences of being born with such a mutation by target gene therapy.  J Neurosci. 2012 Oct 24;32(43):14966-78. doi: 10.1523/JNEUROSCI.2215-12.2012.

Quick Tips

Most parents of children with autism are concerned because their child is a finicky eater.  In addition to it being a headache a times to find foods your child will eat, it causes worry the child will be malnourished. Some are terrified s/he’s going to suffer from vitamin or mineral deficiencies.  The good news is that most kids, even very finicky kids, get enough balance in their overall diets to prevent significant nutritional deficiencies. Clinical studies show kids with ASDs generally prefer the same types of foods as other kids their age (sweet, salty and fatty), but much more so.  Like most things with kids on the ASD spectrum, everything is a big deal.   It’s a good idea to begin varying foods you give to your child very early and avoid power struggles.  Simply make small amounts of various foods available and praise the child for trying different foods.  Sometimes it is the texture more than the specific food type that counts, so experiment with serving the same food in a different texture (e.g. put apples through a blender rather than serving whole pieces of fresh apple). If you are very worried about your child’s nutrition, ask your child’s pediatrician for a vitamin or mineral supplement, in most cases a syrup, that could prevent any possible problems.  Pick your battles carefully and don’t waste your time and emotional energy on stuff that is less important.

Random Thoughts

We sometimes get ourselves into unnecessary and unproductive boxes by the decisions we make.  Lobbyist Gover Norquist convinced Republicans to take a No New Taxes Pledge, which is the root cause of the current Fiscal Cliff crisis, inability to use taxes on the wealthiest people, along with budget cuts, as part of the solution to budget problems.  We do the same things with our kids with autism.  We get an idea in our heads that a particular treatment is of essentially important for our kids, like Gluten-Casein Free Diet or Hyperbaric Oxygen, and refuse to pay attention to the evidence, that it just isn’t working.  In fact it may actually be making things worse.  It’s important to keep an open mind and keep up with the latest information from reliable sources about what is most effective for your children.  Don’t make yourself beholden to one or another group that makes you “take a pledge,” so to speak, committing your child and yourself to something that really doesn’t make sense based on solid evidence.

What I’m Up To:

Ford Ebner 2012 at
Conference in His Honor

I recently spoke at a retirement event for Dr. Ford Ebner, a distinguished neuroscientist at Vanderbilt University.  Dr. Ebner and I worked together for nine years when I was director of the John F. Kennedy Center and he was director of our neuroscience program.   Most of the other speakers were either contemporaries in neuroscience or former students or post-doctoral fellows who had worked with Ebner over the years.  He has been one of the pioneers in research showing how early brain connectivity and rewiring is fundamental to normal development (neuroplasticity), and the consquences of that going awry.  I gave a talk titled, “How I Discovered What Ford’s Rat’s Whiskers Have to Do with Children with Autism.”   I discussed how Ebner’s early work studying plasticity of neural connections of rat whisker neurons (one of the animal’s most important senses) and their brain have led to our understanding of neuroplasticity in children with autism, the basis for long term changes produced by Early Intensive Behavioral Intervention. It was an auspicious event with an opportunity to reflect on the link between basic science and application. 

Travis Thompson (2006) as Director
of the John F. Kennedy Center

Quote of the Week.

One of my very favorite science writers, Lewis Thomas was born 99 years ago this week.  Thomas once wrote, “Mistakes are at the very base of human thought feeding the structure like root nodules. If we were not provided with the knack of being wrong, we could never get anything useful done. “In The Medusa and the Snail (1979), 37.

Notes from Paris

Latest Autism News

Sadly, another article has been published, this time in the British Cochrane Reviews summarizing research on early intensive behavioral intervention that has proceeded actuarially as epidemiologists are won’t to do, but very unlike the way experimental scientists proceed.  The people who run the Cochrane Data Base Reviews process would definitely not approve of the recommendations of the father of modern experimental medicine, Claude Bernard, who said that the most persuasive evidence for a treatment’s effects is demonstrating it can turn on or off a specific outcome, like having autism symptoms or not.  Bernard also said that the average person is meaningless because we aren’t interested in the average person, we want to be able to predict what will happen to each person who is treated.  In fact, Bernard was specifically most critical of what he called the actuarial approach to medicine, similar to the method used in life insurance policies, which is exactly what the Cochrane Reports provide.  After apparently considering the 34 studies showing early intensive behavioral intervention reduces autism symptoms in nearly all children, and enables half to function similarly to their peers.

Reichow, Barton, Boyd and Hume in “Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD),” like several other epidemiologists before them, erroneous conclusion that while such behavioral interventions MAY be effective, there really isn’t much convincing evidence from the 34 published studies indicating that is the case.  This conclusion is no doubt leading Professor Bernard to trash about uncomfortably in his grave in the Cimetière du Père Lachaise in Paris where he was previously resting comfortably. Because there are an insufficient number of double blind studies with large sample sizes, they conclude we know little about treating autism.  How many successful liver transplants did Dr. Roy Calne have to conduct before medicine declared it an effective live saving procedure?  Did the FDA or Medicaid require double blind studies with 40 or 100 patients before they concluded it was effective. No?  Why not?   Just as liver transplant is life saving, so is Early Intensive Behavioral Intervention.  Before it was introduced in 1987 the vast majority of people with autism languished the rest of their lives in institutions for people with severe retardation.  Isn’t it time reasonable criteria of what constitutes outcome evidence are accepted?

Double blind large sample size random assignment studies are great for testing treatments that matter very little, but are devastating when a very costly, highly individualized treatment really matters.

QuickTips

Whenever possible, parents will find it most useful to include behavioral intervention methods within their normal daily routines, rather than creating specific times to practice the skills teachers or therapists or other consultants recommend.  This is because the activities will make the most sense to your child, they will be most easily fit within your lives, and finally that facilitates generalization.  Far better to practice skills once for 15 minutes when getting ready for school, for 15 minutes after school and and 15 minutes before bedtime, than setting aside 45 minutes in the evening to practice ABA procedures.

Random Thoughts

Around 1970 when I got into this field most people with autism ended up in institutions for the rest of their lives, where they were labelled “severely retarded.”  A few were fortunate enough to work on their father’s farm or if they lived in a small town, the hardware store or helping mom or grandma in the kitchen.  Since Early Intensive Behavioral Intervention has been introduced beginning in 1987, about half of kids with autism can now function in school alongside their peers and most go on to high school and some to college.  The other half is headed for functional skills training.  No one lives in institutions.  Early Intervention creates a new life for children who in the past would spend the rest of their years languishing in an institution.   When we achieve that kind of outcome with surgery it’s called a miracle, and considered “life saving.”  When we achieve such an outcome for kids with autism through behavioral intervention epidemiologists working for Medicaid try to prove it’s ineffective and medical insurance companies who try to deny coverage.  I guess the same thing happened with breast cancer treatment that saved lives.  Women had to sue Medicaid and insurance companies to receive the life saving care they deserved, because year after year they tried to deny coverage.  Same deal with autism.  So much for compassionate humanity.

What I’m Up To

I’ve been in Paris for nearly a week, conducted two days of workshops on early intervention and challenging behavior for a consortium of autism organizations and foundations at the Paris City Hall in the main conference room (photos).  A lovely 1840s building that had at one time been a private home.   I visited two terrific autism intervention programs, one MAIA-Autisme’ and the other L’ÉCLAIR, both providing ABA-based interventions for children with autism spectrum disorders and related conditions.   Terrific, well trained staff members running the programs with strong ABA credentials and Dr. Diane Fraser (in black jacket) consulting psychologist for both.  Ana Bibay (standing) directs MAIA and Cherice Cardwell and Liora Crespin direct L’ECLAIR.  

 Parents in Paris struggle to find services and have anguish for their kids with autism just like parents in Minnesota, New Jersey, England and most everywhere else.

Quote of the Week

Since I am in Paris it seems fitting I include a quotation from one of France’s greatest scientists, Claude Bernard, “The experimenter who does not know what he is looking for will not understand what he finds.”  Which fits well with another of Bernard’s words of wisdom, “A fact in itself is nothing. It is valuable only for the idea attached to it, or for the proof which it furnishes.”

Thanksgiving and Rat's Whiskers

Latest Autism News

Another study, this time in the journal International Journal of Health Geographics reports a connection between rainfall in the Northwestern US and autism prevalence. Their study examined “whether the county prevalence of autism in the Pacific Northwest was associated with the source of drinking water for that county and whether this relationship was dependent on the level of environmental pollutants and meteorological factors in the county….We found the previously reported relationship between precipitation and autism in a county was dependent on the amount of drinking water derived from surface sources in the county. We also found a positive association between the EPA's risk of neurological disease and autism, but this relationship was only present in warm areas.”  The lead author of this study is S.S. Hilaire, about whom I have been unable to find any information, however he is apparently part of a laboratory at African Regional Health Education Centre, College of Medicine, University of Ibadan, Nigeria.  It is unclear why a laboratory in Nigeria is studying climate and autism in northwestern US.  The original study on this topic was by Michael Waldman, Ph.D., of Cornell University, Ithaca, N.Y in 2008 and reported a correlation between autism and rainfall, which was later called into question, while the present study suggests a causal relationship.  It is difficult to know what to make of this finding.  About 58% of US drinking water comes from various surface water sources.  Among the highest in the country is a section of central Oregon. Without ongoing monitoring of possible contaminants, the alleged association with autism is not very enlightening (microbes, disinfectants, organic and inorganic chemicals and radiation).

Quick Tips

Thanksgiving is around the corner and parents are beginning to think about, and sometimes dreading, Thanksgiving dinner with all the relatives, noise and chaos that goes with it. Autism Speaks Family Services has some great leads for families to consider, including Thanksgiving activities and preparing your home and relatives for understanding your child’s needs, such as that a person with autism often needs a getaway. Its good to prepare a place before the big day. Some ideas: set up a quiet bedroom with familiar toys, videos, books or other soothing items. Add familiar or fun sensory items: a therapy ball, a mini-trampoline, or even a squeeze toy can be a terrific calming tool. If you're inviting guests who don't know your loved one with autism, it might be in everyone's best interest to prepare them. Explain any differences or quirks that might be off-putting or confusing. Suggest ideas for how best to promote positive interactions ("Jimmy really loves trains - maybe you could bring some photos of your model layout!").  Show your child pictures of what to expect based on earlier thanks givings.  Explain what will happen to your child, who will be there and where they can go for some peace and quite.  Finally, prepare an escape plan if it’s necessary to leave grandma’s house because your child’s meltdown is disrupting everything and causing too much of a rucus.

Random Thoughts

The Center for Responsive Politics, a non-partisan organization estimates that the cost of the 2012 Presidential campaigns will be around $5.8 billion dollars.  That would be enough money to provide a year of 30 hours per week of ABA intervention services for 52,000 children with autism and get them well on their way to better lives.  I wish we could say campaign ads did as much good.

What I’m Up To

I was invited to speak at a retirement symposium for a colleague at Vanderbilt University, Dr. Ford Ebner a distinguished neuroscientist.  He is famous for studying brain plasticity using animal models, specifically rats.  He discovered that if you trim baby rats’ whiskers from birth so they never have experience “whisking” to navigate, if you later allow the whiskers to grow back, they will never recover that lost ability.  He found that there is a critical period for learning to use their whiskers to navigate which are represented on the surface of their brain by specific groups of neurons. Once the neurons are lost because of disuse, they can’t learn normal “whisking” to navigate. Using those nerve cells spares them and creates distinct areas of the brain devoted to navigating by using their bristly little whiskers. This photo shows discrete brain cortical areas devoted to each whisker, which is pretty amazing.  That seems to be the basis of the same process in children with autism, who have a critical period between about 1 and 5-7 years to learning language and social skills.  That’s what I’ll be talking about on November 3^rd, at Vanderbilt University in Nashville, “What do Ford’s Rat’s Whiskers Have to Do With Kids with Autism?”

Autism Treatment Website

For those of you who don't regularly read my Autism Treatment website, this week's update includes a wonderful article written by Diane Lento from Oradell, NJ, about her daughter Kate's 21st birthday celebration.  She tells a moving tale of a series of challenges and finally finding a terrific school based on behavior analytic principles, Institute for Educational Achievement, under the Direction of Dr. Dawn Townsend.  It's a wonderful story.  There is also an article about growing awareness of elopement by kids on the autism conducted by a group at the Kennedy Krieger Institute in Baltimore. Over half of kids on the spectrum go off on their own at one time or the other and are in danger.  Check it out, there are other goodies as well.  

Quote of the Week

“In the long history of humankind (and animal kind, too) those who learned to collaborate and improvise most effectively have prevailed.” Charles Darwin, who entered Cambridge University in 1825 this week.