Sunday, February 10, 2013

College Thoughts, and The Owl & The Pussy Cat

Sorry I’ve been a bit tardy about keeping you up to date, too many irons in the fire, which I’ll explain shortly.  I’ve been giving a lot of thought to a cirtical issue that every parent of a child with autism faces, what will life look like after high school. Our grandson Michael is right in the middle of that process.  That’s what this Oughtism is about.

Autism News

A study published last November in the Journal of Autism and Developmental Disorders confirmed what many people have known for a long time, namely that people with ASDs are more likely to be interested in factually-oriented scientific fields of study that capitalize upon memory for details, rather than those based on abstract concerns most often associated with the humanities.  The study showed a modestly larger percentage of kids who attend college enrolled in the sciences or math than their non-ASD peers (about 32% to 22%). 

The bad news is that kids with ASDs on average have among the lowest college enrolment of young people with 11 different disability categories.  When your son or daughter with an ASD reaches 7th or 8th grade you and they should begin thinking about a vocational future, but not necessarily mainly on academic achievement.   In reality, the reasons higher functioning children with ASDs attend and succeed in college has much less to do with their specific academic grades than in their social adjustment, communication ability and emotional stability, especially their ability to follow the complex social rules, and cope with the stress of being a college student.  Few of the critical issues are about subject matter:

Selecting the right college.  Small is usually better.  A clearly structured academic program, a good disabilities services program, willingness to provide modifications and support for learning needs, and a counseling center with support services.

Availability of coaches and/or tutors to assist with the non-academic as well as academic aspects of college, such as where to sit in class, planning and organization of learning materials, scheduling study time and distraction free place

Liaison with professors.  Many classes that require vocal participation in class will be intimidating to students with autism and may require the intervention of a coach or tutor with the professor to arrive at some accommodation.

Avoid courses that require abstract verbal reasoning, flexible problem solving, extensive writing, or social reasoning which are often challenging for kids with ASDs.

Planning and coping with the very complex array of social demands of daily living, such as meal plans and their rules; where to eat at non meal times; laundry; spending money; budget; using a campus ID and charge card; dorm rules; using communal bathrooms; transportation; campus maps; finding rest rooms; using the alarm clock; e-mail and instant messaging; how lectures work, and on and on and on.

Gladys Williams and Ann Palmer of the University of North Carolina’s TEACCH program have written an excellent article with additional advice for parents and HFA students from which much of my remarks are borrowed.  Among other things, the site recommends several resources:

Liane Willey’s book, Pretending tobe Normal, and in A Parent’sGuide to Asperger Syndrome & High-Functioning Autism, by Sally Ozonoff, Geraldine Dawson, and James McPartland. AquamarineBlue 5: Personal Stories of College Students with Autism, edited by Dawn Prince-Hughes, has 12 essays and an appendix of tips. A recent addition is Succeeding inCollege with Asperger Syndrome: A Student Guide, by John Harpur, Maria Lawlor, and Michael Fitzgerald.  You can get all of them through Amazon or the publishers 

See also the survey by Wei, X (2012) Journal of Autism and Developmental Disorders. November 2012.  You can find the abstract at the journal website. 

Quick Tips

Though it’s still early in the year, it’s not too early to begin thinking about summer.  Your family probably plans a vacation together, i.e. a trip of some kind.  That can be great fun, but also Stressville time for kids with ASDs.   Second, what do you do about continuing your child’s early behavioral intervention or therapy?  Third, should you enroll your child in some kind of summer camp program, and how do you decide which?  Fourth, should you try to shoe-horn in some supplementary lessons of some sort, like speech, therapeutic horseback riding, swimming etc?

Family vacations usually have priority, but before look at vacation brochures, talk with your child’s lead behavioral intervention therapist about policies regarding vacations.  Most providers have specific policies about how long you can be gone without giving up your child’s slot in the treatment program.  Being clear from the outset is best.  While family time is important, part of the decision depends on where your child is in her/his therapy.

Summers can a good time to add other activities to children’s schedules, within reason, but generally not at the price of reducing therapy intensity.  About 2/3rds of the most important therapy gains are made in the first 12-18 months. If you’re child is in year 3 of therapy, reducing intensity for a couple of weeks may not significantly reduce gains, but could have a bigger impact if she/he is approach their 14th month of therapy.

Summer camps can be terrific experiences later in therapy.  Groups of running, screaming children having a great time at outdoor sports and games can be frightening to a child who is just becoming a little comfortable around others.  If you are going to add summer activities in the first year or 18 months of intervention, quieter small group options are a better choice.  In the final year of therapy, summer camps can be great transitions to graduation.

Random Thoughts

Here I am speaking at the ABAI
Conference in Portland
This year’s Assn for Behavior Analysis International Autism Conference in Portland OR provided an entire day specifically designed for parents. It was a real winner.  All the speakers were asked to address specific topics parents most often ask about.  Not only that, all of the speakers are highly regarded for their skill in communicating with parents.  The reaction from parents who attended was wonderful, they loved it, and enjoyed meeting some of the “rock stars” of applied behavior analysis and autism.  Considering such a stellar opportunity tailor-made for parents, we didn’t do a very well getting the word out to the parent community, especially in Oregon and surround states (the Conference was convened in Portland January 25-27th).   We’re going conduct a survey of parent attendees to see how we can reach more people like themselves who could have greatly profited from hearing from such world class presenters as Bridget Taylor, Mark Durand, Catherine Piazza, Peter Gerhardt, Marjorie Charlop, Meme Heineman and parent presenters Sabrina Freeman and Kammy Kramer, and of course, yours truly.   If you have thoughts about ways in which we can more effectively reach out to parents, let me know.

What I’m Up To

I was running around like a chicken with my head cut off during the month of January preparing for the big autism conference.  No rest for the wicked.  Immediately after the autism conference concluded my colleague Wayne Fisher and I flew to Tampa, FL to take part in an AMA Task Force meeting that is exploring procedures for billing for ABA autism services.  It was an enlightening and encouraging meeting.  More instalments to come.

Finally, not to let any moss grow in the rolling stone, I just completed a long over due article reviewing what is known about behavioral, social and psychological treatment of individuals with autism, mostly younger children, and the reasons behind the large, unproductive schism in the field.  The article will be in print in late March or April titled, “Autism research and services for young children with autism: History, progress and challenges,” Journal of Applied Research in Intellectual Disabilities. 26 (2): 1-27.  I think it’s a keeper.

Quote of the Week

Since this week includes Valentine’s Day I thought I would be fitting that we remember that Feb 10, 1846, Edward Lear's A Book of Nonsense was published, and as you will recall, Lear was author of The Owl and Pussy Cat, which was originally published in the children’s magazine Our Young Folks with the illustration below.

“The Owl and the Pussy-Cat went to sea, In a beautiful pea-green boat. They took some honey, and plenty of money, Wrapped up in a five-pound note. The Owl looked up to the Stars above, And sang to a small guitar, 'O lovely Pussy O Pussy, my love, What a beautiful Pussy you are You are What a beautiful Pussy you are.”

Friday, December 7, 2012

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 (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, 21st 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 7th 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. 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 39th Annual Conference to be held in Minneapolis, May 24-28th 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   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.

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.]

Saturday, November 24, 2012

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.

Tuesday, October 23, 2012

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.


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.