Regressive Autism and a Test for Babies
Here it was Charlie’s birthday yesterday (thank you for so many good wishes!) so I’ve been in something of a super-reflective mood: How was this tall boy once curled up inside me? How have we managed to help him through the years and some very tough moments? He’s 11 years old now and memories of Charlie’s 1st year have been flashing in my mind. He was a big, dark-haired baby with long limbs that flailed around and a big head, and, from the time he was born, he often looked out of the corners of his eyes.
Researchers at McMaster University in Canada have developed a new test that can, it is said, detect signs of autism in babies as young as 9 months old and I suspect that this test might have detected “something” in Charlie when he was that age. The test measures the directions of babies’ eyes when they look at faces, eyes, and bouncing balls on a computer screen. From CTV.ca:
[Leader researcher Mel] Rutherford, an associate psychology professor, says the test is “not at all invasive.” The eye-tracker camera sits on a table in front of the child and collects data from eye movement for 10 minutes.
She believes that this is a way to measure how engaged babies are with their environment, which is a marker for normal development.
“It gives us the hope that we will some day be able to say for certain that an individual baby is developing with autism or not developing with autism as early as nine months,” Rutherford told CTV Newsnet on phone from London, U.K.
Researchers have found that children who are developing normally pay attention to people’s faces and engage in eye contact. However, children with autism don’t focus on the eyes, or don’t look directly in the face at all.
“I can do this in 10 minutes, and it is objective, meaning that the only measure is eye direction; it’s not influenced by a clinician’s report or by intuition. Nobody’s been able to distinguish between these groups at so early an age,” Rutherford said in a statement earlier.
At 10 months, Charlie’s pediatrician wrote that he had a minor delay in gross motor ability: He had just started to roll over and sit up unsupported, and he didn’t crawl. (She attributed this to my being too over-protective.) We didn’t take a lot of videos of Charlie but there is one when he was around 9 or 10 months and his gaze is not on other people, or the camera; it’s not really clear what he’s looking at. So, in Charlie’s case, this eye test might have provided a helpful clue.
It’s also clear that I’m talking an awful lot in the video; I suspect I sensed, unconsciously, that Charlie was not developing “normally.” This became much more apparent when, some months later, Charlie was in daycare and he was clearly not like the other children, and not just because he didn’t have any words. He showed initial interest in a few toys and then only the slide and the CD player. One of his main interests was the big silver square button with the blue disability symbol; Charlie pushed it over, and over, and over again to open up the door (the daycare center director was at first amused and then something less than that). It was very painful to see how Charlie was so different from the other children in the daycare but I suspect it was from seeing this that we knew early on that Charlie had “something.” He had just turned two years old when he was diagnosed with autism in July of 1999.
Since Charlie’s development was always not “normal,” it would not be accurate to say that he has what is being called “regressive autism” by the lawyers for the families of William Mead and Jordan King, whose cases are being heard in the most recent “vaccine court.” Kev at Left Brain/Right Brain has been looking at the arguments the petitioners’ lawyers will be using and the views of their expert witnesses. One of those witnesses, Dr. Sander Greenland, is a professor of epidemiology at the UCLA School of Public Health and professor of statistics, UCLA College of Letters and Science. From reading Prof. Greenland’s expert report (go to this post and scroll down to see a PDF file of the submitted report), Kev notes in Petitioners suggest new prevalence:
the figures Petitioners are talking about represent a sub-group of regressive autism he terms ‘clearly regressive autism’ ………….And of course regressive autism itself is a sub group of autism. According to Greenland, the figures are:
Regressive autism: 28% of autism1.
Clearly regressive autism: 20% of regressive autism
Therefore, clearly regressive autism: (approx) 6% of autismNow, when we translate this to what the vaccine hypothesis believers like to call ‘proper’ autism (by which I assume they mean classic/low functioning) we get this:
Classical/LF autism: 33% of ASD (based on Fombonne data again).
So, ‘clearly regressive autism’ is 6% of 33% of ASD.Or in other words, Petitioners ‘clearly regressive autism’ accounts for approx 2% of all ASD.
If you read Prof. Greenland’s report, you’ll note these statements as these regarding regressive autism:
Fombonne (2007, paragraphs 37-39) as argued that most children with regressive autism display subtle developmental abnormalities before the disease is diagnosed, and that (as with other forms of autism), regressive autism likely has a genetic basis. These hypotheses do not however rule out environmental or medical triggers of regressive autism, and in fact are quite compatible with the existence of such triggers (Lainhart et al., 2002).
The argument that most children with regressive autism have pre-existig abnormalities actually implies that clearly regressive autism is very uncommon…….
As of this writing (August 2007) I am aware of no peer-reviewed controlled epiemiologic study of MCV [mercury-containing vaccines] and regressive autism per se; all studies identified failed to separate regressive autism from other types of autism.
Because the currently published evidence cannot rule out a very small association of MCV with autism in general, it cannot rule out an association of MCV with regressive autism, even one large eough to correspond to a risk ration of 2.
If we can put aside the issue of autism and vaccines for the moment (or to another post, like this one): It seems that defining and arguing for the specificity of “regressive autism” and of “clearly regressive autism” will be key for this latest round of “vaccine court.” It will be crucial to prove that William Mead and Jordan King were “normal” in their development and all else, and it will also be crucial to show (or to make it seem) that the “onset” of signs of autism in both children coincides their receiving vaccinations.
As Sullivan reminded us in a comment yesterday, autism is currently classified as a “developmental disorder” and “that is why it is limited to children who show some signs before age 3.” Children diagnosed with autism are not (by definition) developing in the normal, expected ways; they are not gaining skills at the same rate as other children and perhaps their development does not follow a progressive course and some skills that they seem to have, they do not have at a later date. This can be seen as a “regression” and I suspect it will be featured as part of “regressive autism” as argued by the petitioners’ lawyers.
But is it possible that “regressive autism” is a term that seems to specify a particular “type” of autism, but is really just stating what autism in young children is? A child is referred to Early Intervention services because he or she is not talking, or walking, etc. at the times that most children do. “Autism” implies some kinds of delays and differences in development, and these can be seen as regressions, or they can also been as atypical, unusual different ways to develop.
The Special Master in the “vaccine court” has requested to see videos as evidence in the proceedings. It will be interesting to find out what is said about eye direction and the sorts of eye movements that the McMaster University researchers are looking for.
Tags: asd, asperger, autism, Autism Organizations, Baby, canada, eye contact, Legislation, mercury, pdd-nos, Politics, research, Science, Vaccines, washington dcRelated Stories
POSTED IN: Baby, Cause, Diagnosis, Legal Issues, Science, Vaccines
23 opinions for Regressive Autism and a Test for Babies
RAJ
May 16, 2008 at 6:45 am
The vaccinination schedule from birth to 4 months:
http://parenting.ivillage.com/0,,8gm2bq3b,00.html
Hepatitus B vaccine still contains Thimerosal.
Maya M
May 16, 2008 at 7:38 am
“Much progress has been made to date in removing or reducing thimerosal in vaccines. New pediatric formulations of hepatitis B vaccines have been licensed by the FDA, Recombivax-HB (Merck, thimerosal free) in August 1999 and Engerix-B (Glaxo SmithKline, thimerosal free) in January 2007.”
Quote from:
http://www.fda.gov/CBER/vaccine/thimerosal.htm
María Luján
May 16, 2008 at 8:33 am
Hi Kristina
Some comments on the regressive autism
http://www.autismweb.com/forum/viewtopic.php?t=15515
María Luján
May 16, 2008 at 8:33 am
http://www.autismweb.com/forum/viewtopic.php?t=15515
Some comments on the topic
Jen
May 16, 2008 at 9:41 am
Our son did not show gross motor delays, but I clearly remember commenting to a Mom’s group that I was concerned he wasn’t making the typical babbling sounds ie wasn’t using consonants as an infant… I think I first noticed this by 4-5 months, and in fact, he was a year old before he said “da, da, da”. I didn’t notice any oddities in his eye contact until much later (between 2 and 3 years), but looking back, there were clear indications that something was different about him from a very early age. BTW, as we live in Canada, all of his vaccinations were thimerosal free, and he has not received a Hep B vaccination.
Matt
May 16, 2008 at 10:04 am
The *pediatric* Hep-B vaccine contains a much smaller amount than before 1999/2000, when the switch to the ‘thimerosal free’ vaccines went into effect (including for Hep-B). The replacement for the old version has 96% less thimerosal. This left over from the manufacturing process.
You can find vaccines with larger doses of thimerosal, but they aren’t *pediatric*.
Emily
May 16, 2008 at 10:18 am
We declined infant Hep B for all of our children.
I’ve been hoping and asking for more research into these earliest signs, and this looks like a step in the right direction. The earlier, the better, as our own situation clearly illustrates.
Kristina Chew, PhD
May 16, 2008 at 10:40 am
I was looking at Charlie’s baby pictures recently and—-when he was a few weeks old—he was already looking out of the corners of his eyes. He had a couple of different sounds but when he was a year old, no signs of emerging words. I really do think that if he had been at home and not in daycare he would have been diagnosed much later.
alyric
May 16, 2008 at 10:45 am
Could be wrong here but isn’t a LOSS of skills implicit in regression? It would not matter that previous development wasn’t typical merely that speech, motor skills etc went into decline, a degenerative process.
Also ‘classic’ autism as I learnt from Michelle with a reminder to go read Kanner’s paper is not exactly ‘low’ functioning in the sense of being profoundly cognitively disabled.
VAB
May 16, 2008 at 11:30 am
Alyric,
I understand regressive autism to be about a loss of skills. I know someone whose child developed like this. I can be quite dramatic. It is clear the the mechanisms at work are very different from the mechanisms in non-regressive autism.
Annie
May 16, 2008 at 11:30 am
Is there a distinction between “clearly regressive autism” and autism that involves regressions at some point or other along the way?
Kristina, I’m thinking of Charlie and the big behavior regression you said he had (I forget what age it was, but he was already in school, right?) My daughter has had two substantial regressions herself — one at age 2 1/2 in late fall 2006 where she went from 80 words to 15-20; and another at age 3 1/2 starting at Christmas 2007 where she again lost the words she’d regained, coupled with a behavior regression. We’re still in the thick of that second one. But we first noticed her language development was lagging her sister’s as early as 6 months, and that there was something amiss in toy play as early as 9 or 10 months. Those first signs feel like something other than regression to me. Those weren’t stepping backward and losing something she’d previously had; rather, they involved things that she wasn’t gaining on schedule, or was progressing in an unusual pattern.
To the extent that there’s value in trying to figure out regression triggers (I’d sure like to know, myself!), it does seem to change the question quite a bit if you look at the larger picture of ALL autism-related regressions, rather than just the ones that have a s/he-wasn’t-autistic-until-now flavor.
Wonder if anyone is looking at it from that perspective? Or are the inquiries all focused on initial regressions with a vaccine emphasis?
Laura
May 16, 2008 at 1:05 pm
I had some skepticism about regressive autism for the same reason I hold skepticism about gf/cf - parental reports are subjective. Until I saw the video of Doug Flutie’s son. Speaking at age 2, nonverbal at age 16.
I think the testing that is the subject of this blog entry has merit. Although it could probably breed alarmism.
Kristina Chew, PhD
May 16, 2008 at 1:18 pm
@Annie,
Charlie’s big regression came when he was 7. It was mostly behavioral but that affected everything, including school placement, academic progress (slowed to a complete halt), huge problems with communication skills. I do think that part of what was going on was that Charlie was actually becoming more aware and alert, and more (and really) frustrated that he could not communicate his needs or much else. Plus, he was growing a lot and getting much bigger and that affected how people around him responded to him—and this in turn had a huge effect on him.
The question of looking at “the larger picture of ALL autism-related regressions”—-will respond more about that—-
@Laura,
Yes, it could definitely bleed alarmism—-I think we need to emphasize that seeing signs of autism in a young child is just that “signs.” And that there is a lot that can be done, there is support and services—and, hopefully, more public understanding (though this has a long way to go).
I think Flutie’s son is said to have Child Disintegrative Disorder?
http://childstudycenter.yale.edu/autism/cdd.html
Leanne
May 16, 2008 at 2:01 pm
I have video of Patrick at Christmas when he was about 9 mos old. You can hear me yelling his name over and over again in an attempt to have him look in my direction. Basically it’s a video of the back of his head.
Regressions for us have mostly been lack of progression. He never lost any skills that he didn’t gain back later. But this test definately interests me, especially since we didn’t seek a diagnosis until age four because we really didn’t know what to look for.
Regan
May 16, 2008 at 2:27 pm
I think whether this is only detecting signs or is a bottled in bond screen is going to have to come with tests of reliability and followup. The question that I always have, is, okay, then what? Is there identifed best practice for very young children/infants? If you could screen the children at birth you’ld still have to have some idea what happens next.
Eleanor has a regressive autism diagnosis on record. Videotape review was used as part of the diagnostic package at the time.
I recall 2 things–that she developed skills later or less robustly than her older sister (who was precocious on milestones and language, and was 8 years older, so we didn’t consider that they were lagging quite as much as they were), but there were certain things that disappeared in the course of less than a week–a beloved bedtime game, certain playskills and interests, the few words (and they were <10) ceased. Reactions to social stimuli showed a gradual decrease but were quite marked. Stereotypy began and built over the course of about 4 months.
I suspect that the rest of the scenario of the process of trying to get a diagnosis with a stop at speech therapy is familiar; that was a process of about 7 months.
One reason that I have not necessarily considered an external trigger as necessary to be responsible is that I recalled from developmental biology that at some point in infancy/early childhood, brain function and processing changes. My understanding was that some deficits might be hidden because of the limited repetoire that is expected of babies, and because some functions might be compensated for in the infant brain. At the meeting point where more skills are required, and brain functions become more localized is where dysfunction may stand out.
That’s probably not explained well, but that was my attribution at the time and now. There could have been a progressive component, esp. given some of the earlier signs, but that was not diagnosed, and once we started educational intervention the trajectory has been upward with no additional regressions, except for those which were quickly attributable by functional analysis to poor instructional practice. I have not noticed diet, shots, fever or much else strongly influencing either behavior or cognition, and we took data on all of those things at one time or another.
Emily
May 16, 2008 at 2:55 pm
Regan, you explained that very well. This is so complex, but your description is clear.
Jen
May 16, 2008 at 3:05 pm
As with Leanne, our child didn’t so much lose skills as fail to develop them (or perhaps it would be more accurate to say that he aquired and is aquiring certain skills on a very delayed schedule). I agree that it’s difficult to make a diagnosis of “regressive” autism unless there are clear records, such as family videos. So many of the early warning signs are very subtle, and so many family doctors will tell parents to just “wait and see if he/she catches up”…
Emily
May 16, 2008 at 3:38 pm
Jen, that’s been our experience exactly. Our youngest is consistently (so far) 8 or 9 months behind schedule developmentally, across the board for most parameters, every time he’s been tested (he’s 22 months old now and was tested at 16 months and at 20 months).
Kristina Chew, PhD
May 16, 2008 at 3:48 pm
@Regan, thanks for noting this—
“One reason that I have not necessarily considered an external trigger as necessary to be responsible is that I recalled from developmental biology that at some point in infancy/early childhood, brain function and processing changes.”
Charlie too just did not develop certain skills, language most obviously. Also: He would sometimes show the first glimmer of speech or imitation and then get to a point and not progress farther with it (a pattern we still see in his learning today).
Marla
May 16, 2008 at 4:00 pm
Our daughter has been found to have a genetic disorder. I think if more families had their children genetically tested they would find similar disorders. I guess we will never know until parents begin testing their kids genetically more often.
For us M does move forward and regress continually. Her Autism is a tad different in that way. No doubt due to her very rare chromosome disorder and CVS.
C. S. Wyatt
May 16, 2008 at 6:05 pm
I did not receive vaccines of any sort at the regular times, as it was first assumed I was going to die anyway and then I was in and out of ICU for various complications.
I have interviews conducted with my mother and father reflecting on my early months. I was not responsive in the “normal” sense, which is why they assumed there was severe brain damage. I was “disconnected” from my social environment, and hypersensitive to my physical existence.
Well before I was even three or four months old, it was known there was a problem. My parents simply didn’t give up… and that was in the late 1960s.
Was it my birth? Were there underlying genetic issues? I don’t know. I do know I wasn’t given vaccines until long after I was diagnosed as likely MR. I was simply an “FLK” (Grinker 2007).
Lisa Rudy
May 17, 2008 at 9:28 am
I DO suspect that there are several different “autisms” including at least one in which children quickly lose skills already gained AND at least one in which children do not develop typical skills on a typical schedule.
My personal guess is that these are quite distinct - both in terms of symptoms and in terms of etiology.
My son did not “regress” in the accepted sense - nor did he develop health issues so often connected with autism (gut, sleep, seizure). My sense is that those health issues are far more common with dramatic regression - though could be wrong!
Lisa (autism.about.com)
The Eyes Have It?
Jul 8, 2008 at 12:57 pm
[…] back in May, researchers at McMaster University announced that they have developed a computer test detect signs of autism in babies as young as 9 months old. From the Wall Street Journal: “Children with autism in general have difficulty extracting […]
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