Stem Cells for Autism

Danny is an 8-year old on the very functional part of the autism spectrum. He’s happy, has friends, and is in a mainstream class where his work is on grade level. He’s a success in nearly every important way a parent could want. Still, at his most recent visit, his mom gave me a flyer for a company offering fetal stem-cell transplant as a cure for autism. She asked me to take a look at it (she insisted it was dad’s idea) and let them know what I thought. Having, as I do, such a large number of patients on the autism spectrum has helped me learn a lot about treatments that are available. I hadn’t heard of this one, so I was particularly interested in learning about it.

First, here’s a dependable stock tip. People who really know how to make money in the financial markets never, ever, consider selling or sharing that knowledge. If they knew a sure way of making money through a technical analysis system, computer program, or any other way, why would they have an infomercial?

I took a careful look at the brochure. I looked at the website, looked up the people involved.

Have you heard of stem-cell transplants? Sure you have. I’m no expert in this, but here’s the general idea. A person has a specific disease caused by some cells that aren’t working right. We give them new cells, that have the sense to replace the ones that aren’t working right. In this way, a cure becomes possible. Most cells have a certain function. But stem cells are cells that can take on different functions, depending on what’s needed. It’s a promising idea, but hasn’t really resulting in major cures yet.

So is autism caused by a problem with the way that specific types of cells are working? There’s no evidence for this. No one knows what causes autism. A working treatment for autism would be a shortcut to financial and Nobel prizes.

Have you heard of a cure for autism? No? We all know that autism is a mystery. Among ways to achieve fame and fortune, finding a cure for it isn’t something that would be unnoticed. If you had a for-profit business that had such a cure, would you keep it quiet?

You’d be right again, even if you don’t follow the details of ongoing stem-cell research news, to think that you haven’t heard much about using stem cells for autism. Maybe you’ve heard about researchers trying it with some forms of cancer, and some awful neurological and brain diseases for which there aren’t other good treatments. Though there aren’t other good treatments for autism, nobody knows what causes autism. For this very reason, there’s no reason to think that stem cells will help. I can’t swear that they won’t help, but I also don’t know if seawater will help, or radio waves, or marshmallows.

Oh, did I mention they propose to use stem cells from rabbits? Have you been hearing a lot about transplanting rabbit cells into humans? Me neither.
It might occur to you that this must be an exotic, cutting-edge research facility that is pushing the envelope in xenotransplantation to give hope to the hopeless. Some place like UCSF or Yale. The rabbit cells are ‘manufactured’ in Europe. The transplantation into humans and claim that it will cure autism would result, even there, with lost licenses, criminal charges, and likely jail time. So the company has a courier carry the processed bunny cells to an undisclosed--seriously--site in Asia somewhere. There, an unnamed practitioner of some sort does the actual transplantation. On your child.

I guess by now you must have guessed that this is very expensive, they require payment in cash up front, and that there are no refunds if it doesn’t work. If your previously healthy, though autistic, child gets some sort of side effect, adverse effect or worse from the treatment, there’s nobody to sue, and I couldn’t find an address on the website. The only person you actually meet is the person in Asia. Will they still be there, with that name, when you contact the embassy?

I’m not done. I looked at the brochure I had been given, and read it carefully. There were lots of grammatical errors. This is an ominous sign for me. If I give them the benefit of the doubt, and assume that they just don’t have anyone really fluent in English, that would still make me concerned that if you have a question, if something goes wrong, who in the company can you talk to?

I looked at every page in their website, which was entirely in English, riddled with language errors. There was a photograph of a worker in their manufacturing facility, wearing protective equipment. But no gloves. This tells me that the protective outfit was to protect him or her, not prevent contamination of the product.

Another page in the document bragged about the medical advisors of the company. In most biotech companies, these are very impressive people who have little to do with the company, but lend their names in return for stock or money or both. The company touts their involvement as a way to add scientific credibility to their presentations when trying to raise venture capital. This particular group was different than others I had seen or been involved with. None, zero, were scientists or researchers or physicians in this or related fields. Nobody even claimed that their degree in naturopathic medicine gave them any expertise in stem cells, xenotransplantation, or autism or any of the other diseases their company claimed to treat by this method. One of their board members, with MD and PhD degrees, was quite clear in noting that these degrees were awarded “by thesis.” Think about that. MD degree: pay a fee, write a paper. No anatomy course, no patient contact, no classes of any kind. This is a guy that wants a lot of your money to put rabbit cells inside your child someplace in Asia by somebody you will never see again.

At the center of this company isn’t stem cells, autism, or science. It’s money. So I will finish this post with this note, and I’m embarrassed to mention it. How much do I get paid for spending 5 or 6 hours researching a treatment for your child? I do it because I have to. Would your other practitioner do the same? For the same payment?

This is part of the email I wrote back.

With so many 'alternative' treatments, I usually say that it's OK to try it if it's safe and won't hurt the kid.  With this, I am very scared that a courier delivers some product--who knows what, rabbit cells?  contamination?--to a practitioner in Asia somewhere who somehow gets it into your unconsenting child, and then everybody walks away after they get paid.  You couldn't even sue them if something bad happened, and certainly couldn't get your money back.  What about the child?  How will he feel--assuming that he did OK with the rabbit cells--if he 'fails' this treatment?  Won't he feel like he let you down?  Won't he feel like there's something wrong with him in your eyes?  Will rabbit cells make that better?  So, in this case, I'm going out on a limb.  Please don't do this. 
Wolffe

This is their procedure:

STEM CELL IMPLANTATION PROCEDURE
1) Patients consult with their respective medical doctors.
2) Doctor writes a brief medical summary or fills up the medical standardised questionnaire. Doctors can also make 1 attachment in "pdf" file or "jpeg" file comprising all relevant medical report if they think are of significant importance.
3) Doctor sent email to:- 
4)      ’s professional team analyzes the medical summary and/or medical questionnaire. A prescription of individualised preparation of different type of cells
is made if the patient is found to be an ideal candidate for Fetal Precursor Stem Cell Implantation. Doctor will also be informed of otherwise.
5) Doctor consults with the patient. A decision is made to take or not to take up the fetal stem cell Implantation by patient.  Doctor will then email to                  .com upon conformation of consent.
6) Full Payment made to                         (or Minimum: 50%) at least 17 days before carrying out the procedure on the pre-schedule.
7)  Proprietary Primary Cell Tissue Culture harvesting commence (time frame of 14 to 17 days preparation)
8) European Human Couriers transport down the cells from  Lab/Plant fromVienna airport to different parts of ASIA in special packaging while maintaining the                cells at room temperature
9) Individualised prepared cultured Fetal Precursor Stem Cells should be implanted on patient within 24 hours generally and not exceeding 72 hours from time of completion of culturing in our European Plant
10) Post Fetal Precursor Stem Cell Implantation progress report in 3.5 months to 4 months from Doctor to   coordinating team for evaluations as well as database updating.

This is a list of disease they can cure with this technique:
INDICATIONS FOR STEM CELL THERAPY
Ageing Disease
• Menopause
• Depression
• Impotence and loss of libido
• Memory loss
• Arteriosclerosis
• Impaired liver function
• Osteoarthrosis
• Immune deficiency
Autism
Autoimmune disease
• Scleroderma
• Rheumatoid arthritis
• Dermatomyositis
• Systemic lupus erythematosus
• Polymyositis
• Sjogren syndrome
• Hashimoto’s thyroiditis
• Addison’s disease
• Chronic active hepatitis
• Primary biliary cirrhosis
• Glomerulonephritis
• Good pasture syndrome
• Myasthenia gravis
• Bronchial asthma
• Pemphigus
• Bullous pemphigoid
• Vitiligo
• Atopic dermatitis
• Autoimmune hemolytic anemia
• Autoimmune thrombocytopenic purpura
• Pernicious anemia
• Muscular dystrophy
• Neurofibromatosis
• Tuberous sclerosis
• Cornelia-de-Lange syndrome
• Gaucher disease
• Metachromatic leukodystrophy
• Fabry's disease
• Gangliosidoses
• Refsum disease
• Mitochondrial genetic disease
Genetic and Chromosomal Disorders
• Down Syndrome
• Noonan syndrome
• Turner syndrome
• Wolf syndrome
Hematological Diseases
• Thalassemias
• Sickle cell anemia
• Aplastic anemias
• Hereditary hemolytic anemias
• Thrombocytopenia
• Erythropoiesis disorder
• Primary hemachromatosis
• Werlhof disease
Immune System Disorders
• AIDS
• Chronic fatigue syndrome
• Disorder of non-specific immunity(e.g. defects of natural
killer (N.K) cells)
Kidney Diseases
• Genetic diseases of renal tubules
Cancer Treatment
• Enhanced weakened immune system
Cardiovascular Diseases
• Intractable arrhythmia
• Myocardial infarction
• Congestive heart failure
• Peripheral arterial disease
• Chronic cardiac disorder
• Arteriosclerotic vascular disease
• Migraine
Central Nervous System Diseases
• Neurodegenerative disease
• Parkinson’s disease
• Demyelinisation diseases
• Old/new spinal cord injuries
• Apallic syndrome
• Encephalitis
• Locked-in-syndrome
• Amyotrophic lateral sclerosis
• Friedreich’s ataxia
• Werdnig-Hoffman disease
• Duchenne & Becker muscular dystrophies
• Dementia
Chromosomal Diseases
• Down syndrome
• Noonan syndrome
• Turner syndrome
• Wolf syndrome
Digestive System Diseases
• Atrophic gastritis
• Chronic pancreatitis
• Malabsorption syndrome
• Crohn’s disease
• Ulcerative colitis
• Peptic ulcer
Endocrine Diseases
• Diabetes mellitus
• Vasculopathy
• Adrenocortical hormonal insufficiency
• Premature menopause
• Retarded puberty
• Female infertility
• Imbalance state of autonomous nervous system
• Endometriosis
• Female infertility
• Uterine myomas
• Habitual abortion of adrenal atiology
• Parathyroid insufficiency
• Hypothyroidism
Genetic Diseases
• Wilson's disease
• Nephrotic syndrome
• Glomerular disease
Liver Disease
• Liver cirrhosis
• Chronic hepatitis
• Crigler-Najjar syndrome
• PrimaryBiliary cirrhosis
• Primary Sclerosing Cholangitis
• Hepatorenal syndrome
Locomotor System Disease
• Non-healing fractures
• Osteoarthrosis
• Aseptic necroses
• Chronic osteomyelitis
• Osteogenesis imperfecta
• Achondroplasia
• Marfan syndrome
• Arthrogryposis multiplex
• Chronic osteomyelitis
• Chronic arthritis
• Rheumatoid arthritis
• Osteoporosis
Lung Diseases
• Bronchial asthma
• Pulmonary fibrosis
• Emphysema
Metabolic Diseases
• Atherosclerosis
• Lipoprotein metabolism
• A-β-lipoproteinemia
Neonatal & Perinatal Diseases
• Cerebral palsy
• Inborn errors of metabolism
Skin Diseases
• Psoriasis
• Chronic eczemas
• Deep burns
• Acne vulgaris
• Ulcus cruris
• Various eczemas
• Sarcoid Darier-Roussy
• Hereditary keratosis
• Palmaris et plantaris
• Chronic lichen
• Scleroderma
• Vitiligo
• Frostbite of big toes
• Alopecia areata
Radiation Injuries
e.g Post radiation ulcers

Addendum, April 20, 2010.  Just a few days after posting this, and completely by coincidence (as if 60 Minutes coordinates their schedule with mine), a substantial portion of 60 Minutes was devoted to just such a stem-cell scam.  The one they investigated had recently treated a child for autism.  This is a link to part 1 of the segment.  This is a link to part 2 of the segment.

Dancing and Friendship

 

George’s father brought him to me because he was worried. He remembered middle school, and the close friends he made and kept through most of high school. Though both he and his friends moved on and in different directions, he knew how essential they were as catalysts for him to become independent of his parents.

George, 13, didn’t have a best friend. He didn’t have a group of friends that his father knew about. He was smart, courteous, respectful of people and things. He usually had a book with him. His father was also concerned that George might inevitably become known as a nerd.

I admit that I have not seen genetic research investigating whether nerdiness can be inherited. I predict that at some point, there will be a nature vs. nurture debate about it among academic intelligentsia. Among nerds. The issue of nerdism is not the topic of this post, but I would politely point out that George’s father just happened to be the only computer engineer in his working class family.

George’s father was also concerned that his child might have an autistic-spectrum disorder, and wanted a professional opinion.

When I spoke to George, I asked questions I usually ask of teenagers. I asked about depression, suicidality, substance use. There were no surprises in the answers to my usual screening questions. He was a happy, thoughtful kid without any worrisome activities. He agreed that he really didn’t have any friends. The claimed this didn’t bother him. He didn’t say that people didn’t like him, he didn’t complain about having no one to play with. He said he was content the way things were.

How do you get your 2-year old to taste new foods, when she doesn’t want anything that isn’t the right shade of white even on her plate? As far as she is concerned, there isn’t a problem growing to retirement age on milk, macaroni and cheese (made one very specific way only), plain white rice, and cookies. Some years ago, I read a research study that asked how many times you have to put a new food in front of a 2-year-old before she will spontaneously try it. On average, 30. That’s just an average, of course. Some were more adventurous and some took a lot longer than 30 times. One single, lonely, french-cut string bean every night. Seven nights a week for a month. And then she takes a reluctant nibble. And then she says she doesn’t like it.

Be the parent. You know what your child does not know. Maybe George is satisfied with his friendships as they are. Maybe he’s not depressed about it, lonely, isolated. Maybe he’s not suffering from a personality disorder or autistic-spectrum disorder. Maybe he just doesn’t know how helpful and rewarding a good friendship can be. He doesn’t know that it can be crucial to have somebody who completely agrees that the history teacher mumbles and that parents can be unbearably unreasonable. He doesn’t know that eventually his classmates will notice that he carries a book around.

Social skills are an old-fashioned dance. A few of our children need no coaching. They will ask somebody to dance and get out there in front of everyone making a perfect fool of themselves. The rest of us look on critically about the way they look or move, and secretly envious that they are willing to do it. We feel helpless and alone. We want this skill, but feel humiliated to admit we lack it. We don’t even know where to go to learn it. We do not believe it can be learned, and feel like it is a deep personality flaw. Because we believe it can’t be learned, any attempt appears to us as doomed to failure. So we don’t try. We hang out with a group of our pals and make fun of the kids actually having fun.

You now know that this isn’t a flawless oracle predicting our futures. After all, somewhere along the way you became a parent. Professionally speaking, that usually requires help. (Though we have the technology….)

I told George’s dad that I thought he was on a spectrum, but it wasn’t the Autistic Spectrum. Some people, especially starting around middle school, are particularly self-conscious about the possibility of social failure and rejection. We might not be able to teach them to love to dance. We can, however, teach them some dance steps. We can also be there to catch them when they fall.

I made some specific suggestions. If George wasn’t into sports—he wasn’t—he should sign up for an after-school program. He should be given a list of choices. In this local area, there are many choices that aren’t too costly. In his case, there were library programs and science and computer classes. There were also programs in which students like George can tutor other students in certain subjects. This can be really helpful for good students who get their homework done before they get home, and spend the rest of the day and evening playing video games or on the computer. In some schools, there’s still a chess club or a debate team. I suggested finding a program requiring some cooperative activity, where participants have to work together to make something or learn something. The group is the way to find others of about the same age with a common interest.

The next suggestion was to host one or several group gatherings. Don’t miss this opportunity to show those kids where George lives, the stuff he has in his room, the video games he plays. Remember, they are all nervously making fun of the popular kids on the dance floor. They don’t have enough perspective to realize that none of them know how to dance. Be the parent. As everyone shows up, keep a little log book of names, addresses and phone numbers—George won’t think of this. Don’t supervise, disappear into the background. But only after the pizza arrives.

The photograph is from my collection and is by Keith Carter.  It's called Waltz.

The Coming Wave: ADHD

Currently, to get an ADHD diagnosis you need more that just a problem paying attention.  You also need this problem to be causing problems in your life.  I have discussed this many times in the context of many cases.  I’ve described a couple of times giving a ‘test’ for ADHD to a lecture hall at UC Berkeley filled with overworked premeds, and how most of them qualified for the diagnosis by that test.

I read an article about planned changes in the criteria for diagnosing ADHD.  The article quotes Dr. David Shaffer of  Columbia University saying

“We really separated ourselves from the rest of medicine by saying you couldn’t have a disorder unless you were impaired.  We all know that there are some people who persist with a very active and unimpaired life even though they have very severe illness.”

He explained that the current way of making the diagnosis was not consistent with the way most other diseases are managed.

He’s right, of course.  There are, perhaps, millions of adults in this country with Type 2 adult-onset diabetes.  It means that their blood sugar gets abnormally high when they eat sugary things, and simple starches like bread.  But for many of these people, they can control their sugars with a disciplined diet, weight-loss, and exercise.  Certainly, they still have the disease.  No doctor would say they are cured.  But they have no symptoms, and get through their daily lives without incident.  Another common diagnosis is asthma.  You can have it, but have no symptoms for years and only under certain circumstances.  And who would claim that someone who is in a wheelchair and clearly cannot walk is therefore somehow ‘impaired.’

Impairment is relative, of course.  Some of us can’t reach a high shelf, and others can’t see what’s on it.  But human ingenuity being what it is, we mostly can get by despite our inabilities.

I am asked to evaluate many kids with genuine attention problems.  If they are intelligent and creative, and perhaps if their focusing problem isn’t too awfully severe, they develop compensatory skills.  Maybe they can recall what the teacher was saying even while looking elsewhere.  Maybe by making lists of things to do, they keep from falling behind.  Maybe by bringing a carton of pencils brought from home and left in class they will never be without one.

This is a picture of the pen that I have carried and used every day for about 3 or 4 years.   Pretty nice, huh?  I used to lose pens constantly.  Then I received a really nice pen as a gift.  I didn’t use it for a long time.  Since I lost pens all the time, sometimes after a single use, I didn’t want to risk it.  Am I absent-minded?  A close friend convinced me that life is indeed short, and that I should use the pen.  At first, I was obsessive about it.  But I use it so often that it didn’t take long for me to stop thinking about it.  I have not lost it in years.  Am I absent-minded?  Maybe those cheap pens just couldn’t afford the writing-utensil-LoJack part of my brain, which was there all along when it was important enough.

Yet I worry a lot about this particular change (not officially coming for a couple of years, I think).  I have chronicled many cases of kids who clearly aren’t paying attention like they should.

So what?

I don’t think paying attention matters.  Quote me on that.

I have heard parents complain about it, and seen teachers reduce a kid’s grade because of it.  If they fidget in their chair, does it matter?  As I deconstruct ADHD, it’s not the same as having diabetes or asthma. 

As with most of our inner lives, as with our homes, the problems which require fixing are the ones that interact with the outside world.  You want to live in a messy, dirty house?  I don’t think anybody would care as long as you showed up to work on time and did good work.  It may be distracting for the teacher to see a student chronically staring out the window or doodling in her notebook.  But the rubber doesn’t hit the road at all if the homework gets handed in on time and well done, if the projects and exams are good.

This is an issue familiar to the Human Resources manager at your company.  Good management and good morale are based on clear goals and criteria for success.  If you achieve those goals, you should be rewarded.  Notwithstanding legal issues, if the manager doesn’t like the way you look or dress or stare out the window, tough luck.  Even so, we work and interface with others, so nobody gets a free ride in an office or school setting with general hygiene issues, or being disruptive in some way.  That hurts others, thus requiring guidance if not intervention.

In the case of Kyle’s ADHD, I got the impression that the insidious annoyance of a tapping pencil was what pushed his mother to seek out professional help for him.  But when it got right down to it, he was doing as well as he was willing to do.

It may be with best intentions that you encourage your child to start work on the big project earlier than the night before.  And I would support you if this pattern had an impact on the outcome.  But what is it, exactly, that you want?  Do you want your child to get good grades?  Then decide what you mean by that and let them go after it, always with the offer of help and support and suggestions.  If you want your child to stop staring out the window, close the shades.

Here’s what will happen when the impairment criterion is removed:  everybody will have ADHD.  Everybody normal, that is.  [Boy, I don’t use that word much!]  Think about who, until about age 15 or so (or maybe 90), is not fidgety and distractible when having to sit still and do repeated tasks without interruption, pay no attention to their friends and classmates who are not so attentive, who focus on the teacher with laser-like intensity and who sit quietly during any pauses.  Picture these kids from when you were in school.

Say a parent brought such a child to me, as many have over the years, and told me that they’re doing well in class but eat lunch alone, that they don’t have a best friend, that they aren’t part of a group.  Luckily, the same general group of academic experts helped to categorize these kids some years ago as having autistic spectrum disorders.  Normal intellect, normal communication ability, but weak in social intuition, inept in social skills, maybe thought of as ‘different’ by their peers.  Recall, however, that the creative and technology industries are filled with distractible, interrupting, socially inept people.  They are warm, loving, and have sometimes done quite well for themselves.

Maybe you are ‘on the spectrum’, maybe you have an attention deficit.  But when this change comes, the number of kids so identified will explode, and we will see a massive hunt for the culprit.  Vaccines?

Transition Issues -- A Definition

Pretty much every week, I’m in an airplane.  At this point, I have flown so often that nearly everything is routine about it.  Those of us who board earlier in the process are already sitting as the rest of the passengers walk on.  Nearly everybody is using this time to talk on their cellphone, text messages, or do something technological until the plane takes off, when all electronics must be shut off.  So it was not unusual that the guy across the aisle from me was chatting breezily on his blackberry phone in a foreign language as the plane filled up.  I heard the big door shut and sealed by the flight attendant, who announced that all electronics must be turned off.  They walked up and down the aisle.  Politely, they reminded a few of the passengers that they had to finish using their laptops or phones.  The big jet was being backed out of the gate.  One of them tapped him on the shoulder and gestured, with a smile, to his phone.  He nodded his head in cooperation as he continued to talk on the phone.  The plane started to taxi to the runway.  Both flight attendants approached the man and told him verbally that he must shut off the phone.  He kept talking but nodded his understanding.  They walked away, as the plane got closer to the end of the runway.  The plane stopped.  Both pilot and co-pilot, in uniform, emerged from the cockpit and came to the man.  He saw them, smiled and held up his index finger, as if to say ‘I’ll be with you in  a minute.’  One of the officers said, “In 15 seconds we will have you removed from this aircraft by Federal marshalls.  You will be taken to Federal detention.  You are committing a crime and will have a criminal record.”  The man, showing an unexpected facility with languages, seemed suddenly to understand English.  He abruptly said into the phone, “I gotta go,” and turned off the device.

Ask any parent about getting their child to turn off the video mid-story and wash their hands for dinner.  Sometimes they wish they had a couple of Federal marshalls to call.

This is the first essay of several on transition issues, techniques, and objects.  I hope some readers find these ideas helpful.

Transitions are the times of overlap between what we are doing and what we are doing next. 

This is my own definition, so it doesn’t appear just this way in parenting books.  But I think it applies throughout our lives.  In babies, it could be transition between being awake and being asleep, or maybe between being held and being put down into the crib.  For preschoolers, it might be the transition between one activity and another, say coloring vs. playing with blocks.  In school, there are transitions between classroom work and lunch, lunch and active play, then back to class.  By high school, it may be all about just getting off the phone.

Being able to navigate successful transitions is a life skill.  Our frequent flyer, for example, nearly spent a night in jail.  There’s an important balance to be struck between being bad at this and being too good at it.

Many children are brought to me for evaluation of what is thought to be an attention problem.  (Because I do this very carefully, I often find other issues. )  Other children are brought in for behavioral advice because every transition results in a tantrum.

Being able to pay attention is also a key life skill.  It enables us to listen to a story, to follow crucial directions, and to fall in love.  Even if it didn’t help us get through school, it would be important in establishing human relationships and stalking prey on the savannah.

But it’s also important, and little studied I think, to be able to break off our attention when appropriate.  Otherwise, we might end up on the No-Fly List.

There’s something about certain activities, I believe, that interferes with the normal balance of transition controls in the brain for certain children.  For some, video games tap into something very primal.  There aren’t many activities that a child can do for so many hours that they ignore bodily functions.  There’s a clue about autistic spectrum disorders here, by the way.  Some children with ASDs will continue to do a repetitive activity until they fall asleep exhausted, or are distracted or stopped by somebody.  Maybe it’s making a sound, maybe it’s not so benign.  Decades ago, some of these were assigned the unfortunate categorization of self-stimulatory behaviors. 

Max was brought to me because his mother didn’t know what to do.  In kindergarten, he did fine with the class activities and didn’t get in trouble.  In school, he could transition between circle games and coloring and learning to write his name just as well as everybody else in the class.  He was not a behavior problem.  At home, however, it was a different story.  No matter what he was doing--playing with blocks, playing with his robot people, or looking through picture books of trucks--his mother couldn’t pull him away.  She’d plead with him to come to dinner, bargain with him to get into the bath, but he always said words that were the equivalent of holding up an index finger as if to say, ‘I’ll be with you in a minute.’  When she was more assertive, a long and unpleasant tantrum exploded.

Max was not, in my professional opinion, developmentally abnormal, attention-challenged, or emotionally unstable.

It was hard for him to give up a fun activity.  Because of his normal developmental stage, it was almost impossible for him to envision himself in a future situation, even if that future was only 15 or 30 minutes away.  So even when his next activity would be even more fun, he could never appreciate it.  So there was never an incentive to stop what he was doing and move on.

For the record, he was brought to me with his mother complaining that he was constipated.  It was only after I asked lots of questions that the whole story emerged.  He focused so intensely on whatever he was doing that he never wanted to stop, even for brief bathroom breaks.  After a while of ignoring the feeling that he had to go, he no longer felt that he had to go.  This led to a spiral of holding it in until it turned to concrete.

The first step would be helping him get to a less intensely-focused state, in which he'd be less and less invested in his current activity and more ready for the next.  I suggested a gentle reminder at 20-minutes.  Mom could tap him on the shoulder and let him know that a change was coming.  As expected, he would nod his head or indicate he understood but otherwise show no indication that he would comply.  Then again at 10-minutes, but this time with a little more discussion.  At 4 or 5 minutes, he should be told to shut off the video.  He won't, but he also won't be surprised when it happens.  Maybe he won't like the transition, but at least he'll be prepared for it.

A Glimpse of New Autism Research

Over the years, I have acquired many autistic patients.  The community of parents is relatively involved in groups of one kind or another, and useful resources are generously shared.  Once they come to me, the parents are generally happy with the service I provide.  Because I take my time and am very careful in establishing some kind of rapport with the child, the kids seem to like me and as a result will allow me to examine them.  The parents, I think, appreciate my very slow approach and willingness to let the child have some sense of control in the exam room—which is often stressful for the non-autistic.

I was lucky to have once taken a course given by Fred Volkmar, and have attended many scientific talks by him.  He and colleague Ami Klin are, in my professional opinion, the people who know more about autism and autistic spectrum disorders than anyone else on the planet.  (Over in my Amazon store, I have put some of the key books that they have written about Autistic-Spectrum Disorders in the section called ‘The Autistic Spectrum.’)  Several years ago, I attended a talk by Volkmar at which he showed video of groundbreaking experiments with autistic people.

They would be shown a clip from a movie.  If I remember correctly, it was a scene from Who’s Afraid of Virginia Woolf?  The movie is heavy on dialog and interpersonal drama, but not too much action.  Subjects in the study were rigged with a camera that tracked the movements of their eyes and mapped that to the screen.  In this way, the experimenter could see and keep track of exactly what the person was looking at on the screen.  Even if the people on the screen were screaming at each other, if you were looking at the sofa, this apparatus would pick it up.

Why did they even try this elaborate experiment?

Though they never discussed it with me, it probably has its roots in the problems people on the autistic spectrum have with social interactions.  Even when their language and intellect is fine, eye contact can be awkward or avoidant.

What they found was that typically-developing subjects would follow the drama by watching the actor’s eyes, and change the eyes they looked at when the speaker changed.  Those on the spectrum kept looking at the actors’ mouths.  As the scene unfolded, this pattern became more and more clear.

Jump forward maybe 5 years or so to today, when I found a recent research study by Klin and others in Archives of General Psychiatry.  Now they used the same kind of apparatus, but had 2-year-old subjects.  They spared the kids all the friction between Elizabeth Taylor and Richard Burton by producing their own carefully-orchestrated movie of a friendly grown-up talking and singing and playing games with them onscreen (like pat-a-cake).

The eyes of the children followed remarkably different paths.  The ASD children looked at mouths.  The typical children looked at eyes.  Even a group of developmentally-delayed children looked at eyes.  The more severely autistic the child, the more they seemed to prefer mouth over eyes.

Wait—is it the mouth that’s so interesting or is it just because it’s moving?  So in another experiment, they showed just an animated outline of the actor, both upright—which you might be able to figure out—and upside-down, which looks nearly uninterpretable.  The experiment was run again with an animation that showed movement coupled with sound, which they called ‘audiovisual synchrony.’  This proved to be the most attractive of all.

Why is this so important?

There are two big reasons that come to mind right away.  First, there is no test for autism.  There’s no lab test, nothing.  With some basic technological standardization, this apparatus and its interpretative software could be an essential tool not just to identify affected children but also to measure how affected they are.  That’s been a dream of those working in the field for a long time.  Often, kids were given the diagnosis because they weren’t speaking, even though their social interactions were generally OK.  Sometimes those with real trouble with their social interactions would not get that extra coaching they need because their language was normal (Dr. Volkmar, by the way, literally wrote the book on Asperger’s Syndrome).  An autism diagnosis was usually dependent on the examiner.  An objective test of any sort would help to figure out if there really is a growing incidence of autism.  And it would enable all of us to figure out if an intervention were actually helping.

But there’s another big reason, though the authors of the study barely hint at it (rightly so, since they didn’t study this).  Research on babies over the past 100 years or so has shown that babies—even newborns—prefer the sight of a human face.  The faces we make when we hold and play with a baby are thought to be essential for both normal brain development and normal development of attachment and social interaction.  What if they show that this aberrant gaze issue is present in infants that eventually have an ASD?  It’s a great thing because kids won’t get diagnosed at 2 or 3 or 4.  Early intervention has a chance, at least, of having a substantial beneficial impact.

And there’s my hidden agenda….  If we hook a 1-month-old up to this camera and show this animation, and the baby is diagnosed with autism, what does that imply—once and for all—about MMR vaccine, which kids don’t get until they’re 12-months old?

Addendum:  I found another interesting research study, though it’s a little heavier in the molecular biology.  This study found that some common genetic variants, all on Chromosome 5, correlated with autistic-spectrum-disorders.  I’m hoping that  this results in prenatal testing.  And then maybe a few more children will get the shots they need.

Jeremy--Teacher says he doesn't pay attention

Jeremy’s mother called me today and said that his school requested an ADHD evaluation because he wasn’t paying attention. He just turned 10, and was struggling in school.

Several years ago, his mother told me that his school wanted to ‘retain’ him, which used to be called getting left back when I was a child. At that time, I told her in clear terms what I thought of ‘retention,’ which is a common suggestion for elementary school kids. This will be a topic of its own series of posts. I suggested she request an IEP, which I attended with her. They didn’t retain him, and he was given some special help in a couple of subjects. Since that time, he has kept up with his grade until now.

Jeremy has never been in trouble. He’s kind and polite to everyone. But there’s something different about him. When he speaks, the words make sense but the rhythm of his speech is off. Often, he will sound a little like a computer speaking, with flat intonation that masks emotional content. This speech issue is just one aspect of some social difficulties. He likes most other kids, but seems to have a lot of trouble reading and reacting to them in a typical way. He does have a breaking point, where frustration and loneliness make him sad and upset. He is a bully magnet.

He also has never been given a diagnosis. His parents can’t afford several thousand dollars to get him tested for all kinds of learning disabilities, and he might have some. The school and school district (and state, for that matter) have no money and are cutting some of these special ed and tutorial programs.

His teacher told mom that he couldn’t concentrate in class and he has requested being allowed to sit in the hall and do his required work in a more quiet environment. The teacher took this as oppositional and sent him to detention, where he had never been before. That afternoon, he told his mom that he loved detention since it was really quiet and he could really focus on his schoolwork. He accomplished several days of homework assignments in 1 hour of detention, completely without direction or supervision.

A picture was emerging. I asked more questions about all kinds of sensory input. Mom said that he was indeed sensitive to ambient noise and found it hard to concentrate in noisy environments. He also was very sensitive to smells, tastes, and the textures of his clothes. He was always cautious about people touching him.

So I could see that he did have an attention problem. But it sure didn’t smell like ADHD to me. He had no attention problem at home or anywhere else except for the classroom. He didn’t have this problem last year, with the teacher who adored him. He didn’t have it in my office, where he would sit and look through a book as his mother and I talked. People who have ADHD have it everywhere they go. They have it on weekends and weekdays, at school, at home, at work, in their conversations and their personal relationships.

I had suspected a diagnosis for Jeremy for years, but what good would a label do for him? I decided to broach this topic with his mother.

I told her about the things I had noticed: the speech issue, the social stuff, the sensory sensitivities. These all could be minor features of autism. But clearly, there were many features of severe autism he didn’t have. He spoke appropriately for his age. He didn’t seem to have any hand-flapping or other repetitive movements, and he was definitely interested in making connections with others. This was an autistic spectrum disorder. There just aren’t enough specific diagnoses to fit everybody on the autistic spectrum. The official ones are Autistic Disorder and Asperger’s Disorder. He didn’t have either of these. Everybody else, pretty much, gets lumped into Pervasive Developmental Disorder--Not Otherwise Specified.

The reason I brought this up with his mother was the result of a 2004 California Law called the Individuals with Disabilities Education Improvement Act [IDEA]. (Other states also have special education laws, and this link has links to the laws in other states.) If a child is diagnosed with dyslexia, for example, the school may get them reading help, if the school can afford it. But the law is explicit for the diagnosis of Autism--the state must provide the needed services. It's possible that if he were diagnosed with autism, that might open up opportunities for him to receive services his family might not afford. But will teachers expect less of him? Will he expect less from himself?

I hate assigning labels. They pigeonhole our children in ways that are convenient only for the industrial institutional system of education and the cultural biases of limited expectations. I am truly fortunate to have learned from and worked with creative teachers, fabulous professors, and brilliant colleagues with inept social skills, inarticulate conversation, or quirky nonconformist interests. Maybe they, too, met the criteria for PDD-NOS. I'm sure that the list of Nobel Prize winners includes a lot of people with these traits.

My Swine Flu post.