The Regression Question
June 16, 2008 by Kristina Chew, PhD
Filed under Health
Do some children seem to be autistic from the time they are babies, while others develop normally and then lose skills? Is autism “innate” in some children and “regressive” in others—-are some children born with autism (suggesting that autism is genetic) while others become autistic (due, it is thought, to some “trigger” such as a vaccine or other environmental agent)?
In the most recent Autism Omnibus trial, the notion of “regressive autism” and even of something called “clearly regressive autism” has been key. “Clearly regressive autism” is described in an expert report by Dr. Sander Greenland, a professor of epidemiology at the UCLA School of Public Health and professor of statistics, UCLA College of Letters and Science. “Clearly regressive autism” is described as a subgroup of “regressive autism,” which is itself a subgroup of the autism phenotype, and is what the lawyers of the families of William Mead and Jordan King have argued that they have.
A transcript of testimony by Dr. Catherine Lord of the University of Michigan and an expert on autism diagnosis offers some interesting insights about the notion of “regressive autism” as a distinct subgroup of autism. Dr. Lord’s testimony suggests that some regression, in differing degrees, occurs in all autistic children. Ms. Clark has transcribed some of the transcript at Left Brain/Right Brain; some excerpts.
[Dr. Lord]….there isn’t a regression or not a regression the question is the degree and type of worsening that occurs, how long it lasts and how many skills a child has before that occurs
[Ms. Ricciardella from the Department of Justice]: Now in terms of the clinical outcome of a 5 or 6 year old with autism. Is there any marked difference in the clinical outcome of a child who had early onset autism versus a child who did indeed have regression.
[Dr. Lord]: most studies have found no difference at all. The studies that have found differences have found these relatively small differences in verbal skills
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[Dr. Lord]…..things we used to think only happened in kids who had regressions are actually happening in almost everybody who has autism, because there are some children who look very different from typical children at 12 months, but those are few and far between and in fact in our follow up study that is not necessarily predictive.
The kids who are not making eye contact at 12 months are not the most autistic kids at age 3. So many things change during that toddler period and I think our [conceptualizations] of what regression is are partly based retroactive trying to figure out what happened and didn’t happen which is quite different than when we can see it happening right before our very eyes.
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[Dr. Lord]…….There are many different disorders where the onset occurs later on. We have Huntington’s disease and schizophrenia and sickle cell anemia and all kinds of disorders… where in some cases we know are genetic but occur later on. So I think we can’t make a simple inference that because something emerges later that means that somehow someone has caught a disease or had some kind of particular environmental event that caused it.
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I think the term congenital autism means nothing. As I said it’s a developmental process. We can’t diagnose autism in a brand new baby. And so in all cases something is developing that would lead us to autism. So to make this distinction between congenital and regressive is a false dichotomy.
(Please note that each of these quotations from Dr. Lord occurs in the larger context of her testimony, which should be read to get the full meaning of her statements.)
I’ve noted before that, when Jim and I look back at Charlie’s earliest days, we realize that he was “different” from the time he was born. In his first baby photos, he’s already looking out of the corners of his eyes, and he’s been arching his back (in comfort? just to stretch out?) since he was in utero (indeed, after Charlie had nursed, he used to throw himself grandly back over my arm, eyes closed, satiated and his back arched so tightly I could not straighten his little body out). Charlie had a couple of sounds that he seemed to babble more when he was turning one year old, but no words. At 8 or 9 months, he could spend hours looking at sunbeams on the floor or opening his entire collection of board books and casting them on the floor. He was late to acquire all of his gross motor skills, from rolling over to sitting up to standing and walking, though he had a good pincer grasp and ate solid foods and cut his teeth on time.
But Dr. Lord’s cast a new light on some subtle things of Charlie’s development. He made eye contact, though I can’t remember how consistently (he certainly caught my eye right before he latched on to nurse). Jim used to hold up one arm and Charlie copied him (sometimes with great fervency), though when Jim held up both arms, Charlie still held up one. By the time he was 2 years old (when he was diagnosed with autism), Charlie said one sound, “duh.”
These weren’t huge losses of skills and they happened at the same time as Charlie was (finally, it seemed) learning to walk at 16 months (prior to which, he had not crawled, but had scooted around on his derriére, with one leg tucked under and his hands propelling him). Charlie’s was a curiously slow, gradual, and not-textbook development—-pretty much what has remained the case with him to this day, when weeks, months, years pass prior to him gaining some skill and the one day, there it is. That’s how it was with him swimming, which he just started to do when he was six years old.
It’s been pointed out that autism is a “developmental” disability or disorder. Certainly Charlie has developed, but in a way all his own and very slowly more often than not, but surely.
Hi Kristina, I think all of Dr. Lord’s testimony is fascinating. What I transcribed was on the “May 28th 0605am” mp3 which would be the 1st mp3 from day 13 … I think.
When you go to the omnibus website the files are listed as “Day 1 file 1″ Day 1 file 2″ or something like that. But when I open them in iTunes they have a date and time on them.
I think a lot of people are intimidated by the size of the mp3 files. That one is about an hour and a half long. I get the feeling that not many people have actually downloaded all the audio files. That’s one of my incentives for continuing to plug away at transcribing bits of it. Though I think that the real transcripts will be up maybe this next week.
ftp://autism.uscfc.uscourts.gov/autism/thimerosal.html
That’s the page where people can find the audio recordings.
I find this interesting. Throughout my life since I can remember, my skills have gone up and down, different trajectories for different skills. It’s kind of funny, though, after all this time thinking that certain aspects of my early childhood were in fact autistic traits. Interestingly enough, while I pretty much started out with echolalia, when I was going to elementary school I don’t recollect doing it much, until I was about 11 or 12, when it accounted for more and more of my speech, and then a few years later not so much again, though I still do it. There’s lots of things like that, and it’s fun to look back and wonder what things that were just business-as-usual for our family are actually held in common with a number of other autistic people.
So, in other words, there is no such diagnosis as “clearly regressive autism.” I wonder where the epidemiologist got the term. I suppose it is an invention of the anti-vaccination groups, which will stop at nothing to try and re-invent scientific terminology without scientific evidence and without listening to the real scientists who have been responsible for the better world we live in. Dr. Lord is a real hero. She is almost single-handedly responsible for the ADI and the ADOS. Those two tools have led to better, earlier diagnosis — more accurate diagnosis — so that people get services they need, so that they get properly diagnosed. Those tools have made it possible for people throughout the world to be tested for autism. Yet Dr. Lord will no doubt be demonized by the anti-vaccinationists instead of being seen as the thoughtful caring hero that she is.
Melody, your description of different trajectories for skills going up and down is something that rings true for me when I think of my 4-year-old daughter. She’s had what we identify as two substantial “regressions,” but there were different skills involved and we were aware of developmental differences a year and a half before the first identifiable “regression.” It’s helpful for me as a parent to hear your experience — as well as Dr. Lord’s nicely nuanced testimony.
“clearly regressive autism” as a descriptor kind of reminds me of one I saw in an about.com article a week or so ago. It kept referring to “accurately diagnosed autism.” That just made me shake my head.
Niether of my children “regressed” though as they get older, some of the differences become more apparent.
And Kristina, why am I not surprised about Charile and eating “on time”
… as a fellow woman of “short stature,” it won’t be more than another year or so until my 8 year old is taller than me.
Moosie stared at my armpit when he nursed, but it took him over 3 months to figure it out, so I don’t blame him… once he figured it out, it was hard work and all business! I didn’t care where he looked; I was just glad I didn’t have to pump anymore!
My son didn’t regress. His development became different from normal starting at 12 months, when he didn’t point, and his language skills didn’t take off as expected. OCD symptoms started at about 15 months and perseveration at about 18 months. Sensory dysfunction was never a major problem but it is the only thing that I think was already happening from birth (always needed to be held, never wanted to be left laying on a crib and had trouble staying asleep by himself). Also very picky with food since 12 months of age.
I could never trace his changes to a single event, they came gradually and that’s why I think his autism was “programmed” to happen in his brain development. If there is any environmental cause I believe it happened in utero or even before conception. Also, I have a first cousin with Asperger’s.
@ange, I kept my pump for a years and then when we knew we just would have Charlie, discarded it gladly. I was a really picky eater when I was a child and it’s been something else to see Charlie never hesitate to dig in!
My youngest son had problems from infancy with motor skills, joint attention, etc., and the earliest signs of autism before age one. AND then at about 12-13 months, he also regressed, losing the one word he had ever spoken, not heeding people trying to get his attention, and losing his “bye bye” gesture.
Eleanor regressed at 20-24 months, in having lost most of her skills and the ones that stands out in my mind is the very emergent symbolic play, and a tiny vocabulary. There was emergence of stereotypy. She had also been a more nervous kid, but a couple of familiar activities evoked fear, not the previous pleasure, and that was alarming.
But that said, well before that she was not on the same kind of trajectory as our older daughter, had a very splintered developmental profile and was missing social referencing, joint attention and some of those familiar things that should be there, such as “bye-bye”.
I would probably spot those immediately with hindsight. Then, it was only a vague feeling since the major motor milestones seemed to be fine, and other functional skills seemed acceptable.
We did not see any clear pattern of regression in either MJ or SJ. I have worked with some young children that have had clear regressions in their development. Recently I was seeing a boy (for motor issues) that initially had great eye contact and regard. He began talking on time and at 18 months had 100+ words, could identify eight geometric shapes, identify all letters in the alphabet and numbers 1-10. By 23 months he had no words. The regression was in every area except fine & gross motor. Interestingly, this child seemed to respond to the GFCF diet. He began intensive ABA focused services at 24 months and continued to regress for a few more months. I really feel there will be new subcategories soon and hopefully these will help us decided which treatment paths/approaches will work for which kids.
“I really feel there will be new subcategories soon and hopefully these will help us decided which treatment paths/approaches will work for which kids.”
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I’ve often felt that the broad category term “autism” or “PDD” is somewhat unhelpful because of the range that it encompasses under that umbrella. To paste additional tags such as MR, ADHD, etc. seems like an afterthought rather than a distinct diagnosis.
Albert: In his report, Dr. Greenland says that he made up the “label” of “clearly regressive autism” himself: “Within such broad categories of regressive autism, there can be cases of autism for which early autistic symptoms are absent (Werner and Dawson, 2005). I will label such cases as ‘clearly regressive autism.’” (Greenland expert report, pp. 6-7.)
The Werner and Dawson report that Dr. Greenland cites is “Validation of the phenomenon of autistic regression using home videotapes,” which can be read here. As you can see, Werner and Dawson did not conclude that their subjects who experienced regression were typically developing in early infancy. To the contrary, they found subtle differences in neurological development before 12 months. Dr. Fombonne expanded on this idea during his testimony.
We used to call one of my twins “the archer” when he was an infant because he slept in a position as if he had just shot an arrow (Leaning way back with one arm in the air) Both boys were autistic from the get-go, as far as we can tell. In the womb they were very, very mellow, and still are today, for the most part.
My boy was different even when he was a baby. He banged his head against the crib from three months onward. He only played water bottles and looked at things that spin. He didn’t crawl but moved around with his bottom…
Recently, I got to know that my mother-in-law’s brother has two severe autistic grandchildren. So I guess that’s genetic.
My boy improved a lot, since he was diagnosed at two. He has many hours of ABA, OT and biomedical treatment. He is in a mainstream primary, but in a special needs support class. He loves to go to school, and enjoys it everyday! I am so glad for him! I am not expecting him to be cured, but as long as he has a quality life, that’s enough!
I have to say that I did think “autistic” the very first week (and he’d had no vaccines, btw). It was something in the way he moved ; ) I really just knew it.
I realize our situation might be different than most since the rare chromosome disorder in addition to Autism and CVS. However, M showed signs since birth but also developed skills and regressed in areas. She is still one to move forward and then to regress. It can be very heartbreaking to see her move forward and then regress for months. Sometimes the skills are regained and some are not. It is very confusing.
No regression and no loss of skills for my son. His development was slow and uneven. He could speak before he was even one, but he never crawled or showed any desire to move on his own until he was 12 months old. Then, all of a sudden, he stood up and started walking when he was 13 months old. His gross and fine motor skills were and still are clearly delayed. Looking back, the signs were all there, but it was so easy for us to overlook them, because he could talk earlier than any other child we knew, he could count and name objects and shapes and animals, before he was even two. When I watch videos of his two first years, it is more than obvious that there’s something there, that I, by then, was unaware of. If it so happened that at some point my son had lost his speech, it would be easy for me to say that his development was normal before that (after all, he did speak and walk on time). It wouldn’t be true, though.
@athina,
a family whose son has Asperger’s noted the same thing about their son’s development. He had very early speech and certain academic skills (knowing letters and numbers); was not toilet trained till 4 (and it was difficult). His developmental trajectory was just very different, rather than delayed for most things.
I have to say my son clearly regressed. That doesn’t mean he didn’t have the autism to begin with, but he regressed.
about 6 months, I started feeding him baby food he’d hang onto the spoon and direct it back and forth between the bowl and his mouth, all I did was make sure the food didn’t fall off… was only finger eating at about 18 months…
He talked early as well, could even say ‘wowa’ for Lola by around 9 months, and it was clear he was referring to his older sister, and not copying a sound he heard.
He’d laugh when I copied the UScan’s and would play patty cake around a year old…
but after he started walking/running, that was all he wanted to do, and he lost other abilities.
I can’t use the ‘he never made eye contact’ to identify the early signs either, as he still makes eye contact… basically the only ‘early indicator’ I’ve got is the fact that he was sensitive, which technically isn’t a trait of autism…