Wednesday, December 27, 2006

What Do Parents Attribute Regression To?

Wakefield et al. (1998), despite having been partially retracted, is the paper considered mostly responsible for an autism-related anti-vaccination scare that started with the MMR vaccine and subsequently evolved to include thimerosal-containing vaccines (TCVs). The MMR vaccine has been the focus of hype mostly in the UK, whereas TCVs are most often blamed for autism in the US.

If you search the VAERS database for reports filed in all of 1997 on MMR-attributed autism, you will find 16 reports of adverse events. If you do the same search in all of 2002, you will find 120 reports. That gives you an idea of the effect of MMR hype on what parents attribute autism to. Thankfully, the number of such reports appears to be declining in recent years, with only 40 in all of 2005.

Lingam et al. (2003) found that not only did the rate of attribution of regression to the MMR vaccine changed post-Wakefield, but some parents apparently changed their story as well.
Widespread public concern about the possible relation between autism and MMR began in August 1997, with the pre-publication release of information about the Wakefield study, which attracted considerable and ongoing media attention. The date at which onset of developmental regression was first recorded in the notes was obtained for the 106 cases. After excluding unvaccinated cases and those vaccinated when aged over 24 months (of whom all but one were children vaccinated in the 1988-89 catch-up campaign), we found MMR was reported as the trigger in 6/30 (20.0%) post-August 1997 compared to 2/46 (4.3%) before August 1997 (p = 0.052).

From August 1997 the reported presence or timing of regression changed in 13 cases. For six of these, regression was mentioned for the first time after August 1997, even though many health professionals had seen these children before this date. In seven cases the recorded timing of onset of regression changed in relation to MMR: six closer, one further away.

But there is some other data of interest in Lingam et al. (2003) which I wanted to go into. They survey parents about triggers thought to cause regression.
In 44 (42%) of the 106 children with detailed information on regression, a specific trigger was mentioned as a possible cause. The most common (13 children) was a household or social change such as the birth of a sibling, then vaccination (12 cases). Other triggers mentioned were: viral and bacterial infections (n = 7), seizures (n = 7), postsurgery (n = 2), and other causes (n = 3). The MMR vaccine was mentioned specifically in eight of the 12 cases where a vaccine was suspected. Although families would not have been directly asked about this possibility, this finding suggests that very few parents (less than 2% in this cohort) considered that MMR vaccine might have triggered their child's autism.

Interestingly, in this post-Wakefield survey, there is one trigger parents seem to attribute regression to more often than vaccination: Household stress, such as the birth of a sibling.

In case there are doubts about this, let's look at another survey on language regression, Shinnar et al. (2001) (full HTML text can be temporarily found here). The following is what they found.
Fifty-two families (29%) reported a trigger to the regression (Table 2). The most common triggers reported included family stresses (n=23), such as the birth of a sibling (n=10) or moving (n=7), seizures (n=13), or infectious/immunologic triggers (n=14).

More specifically, they found that only 8% of parents attributed regression to immunization, compared to 19% who blamed the birth of a sibling, and 44% who blamed family issues in general.

It is often said that autism researchers would do well to pay attention to parental experiences. There is some definite merit to this idea, of course, as there is merit to the notion that researchers should listen to autistics themselves. It follows that there must be a whole subfield of autism science dedicated to studying the link between family stress and autism/regression, right? Well, I'm unable to find much of anything about this link through Google Scholar. But surely, the potential link must have been mentioned as part of the Combating Autism Act, correct? No, apparently not. At least there must be mailing lists established to discuss this link or blogs where it has been mentioned, right? Not that I know of. I actually believe this is the first blog post where the link between stress and regression is the main topic of the post.

Why might this be? I suggest it's because there won't be class-action lawsuits that address the stress caused by the birth of siblings. There aren't specific big corporations that can be blamed for family issues. There is no role for the illuminati to play. And perhaps most importantly, it seems difficult to come up with grandiose promises of cure for stress-induced autistic regression.

Further reading

-Whatever Happened To? (Joel)
-Is the TV Hypothesis more Plausible than the Thimerosal Hypothesis? (Joseph)

19 comments:

  1. Thank you for this. It's a big deal that gets ignored because there isn't a law firm out there pushing it into the media or parent organizations pumping money into professional PR firms to promote the horrors caused by the birth of younger siblings or by a family move (divorce, whatever...)

    ReplyDelete
  2. Athough I would question any conclusions drawn from analysis of VAERS data (MMR attribution), the parent beliefs related to stress are interesting. Thanks for the skeptical look at this Joseph.

    ReplyDelete
  3. I should clarify that Lingam et al. (2003) is a parental survey of a cohort of 567 autistic children.

    It's not related to the VAERS, of which I just thought it was interesting to mention the results of a couple searchers, mostly to illustrate one of the major drawbacks of VAERS when it comes to autism studies specifically.

    ReplyDelete
  4. A birth of a sibling is [was] considered to be a trigger for autism? I have a hard time getting my mind into that one - a bit chicken and eggish.
    Best wishes

    ReplyDelete
  5. A birth of a sibling is [was] considered to be a trigger for autism?

    I do not believe any mainstream researchers in the US have stated it's a factor. But apparently many parents feel it is, though you don't hear much about that.

    There's a case report, Gomberoff & De Gomberoff (2000), which claims to report on two girls who developed "autistic devices" in response to the birth of a sibling in one case and mother's pregnancy in the other.

    ReplyDelete
  6. I would think a birth of a new sibling certainly could "trigger" autism.

    Not in the sense of causing autism, but in the sense of upsetting a child enough that he no longer has the coping abilities that he had when he wasn't so upset. Autistics often seem "more autistic" under stress.

    My guess is that the parents really were seeing something, and this was it.

    ReplyDelete
  7. I think it could trigger depression and/or PTSD in a child who is already autistic. That would be very noticeable.

    ReplyDelete
  8. What about only children who are autistic?

    ReplyDelete
  9. Quite interesting indeed. Also, I'd say that whether parents perceive a regression depends very much on what sort of development the parents (and the culture in general) expect from a child. Whether the parents view the child as regressing makes a great difference in how the parents interact with the child, which in turn influences the child's development.

    Case in point: My son occasionally said a word or two as an infant, but after he started walking, he spoke less. Instead, he often ran to whatever he wanted and tapped it (such as the front door, if he wanted to go outside and play).

    I never saw that as a developmental regression. To me, it seemed like a reasonable and intelligent alternative method of communication for a toddler who didn't know many words yet and just wanted to be out playing, rather than having a conversation. I just figured that he would talk more when he was older, and I didn't worry about it.

    I'm sure many of today's parents, panicked by autism awareness hysteria, see changes like that as regression and become terrified that their toddler will never speak. They rush the child to various specialists and put him through speech assessments and other tests. The child's routine is greatly disrupted, and he probably knows that his parents are worried about him, even if he doesn't understand why. That could cause him to become afraid to speak and to develop other stress-related changes in his behavior. Then the parents become even more frantic about the tragic fate that they believe awaits their child, and a very nasty negative spiral develops.

    ReplyDelete
  10. I have a similar experience. My son didn't really regress, but his autism became more obvious as he grew older and bigger. He started to jump up and down and run around more, flapping his hands and so on. He never did speak in sentences, so I can't say he lost language. On a couple of ocassions he said "Hi dad" and has never said that again. One might think that's a regression, but it seems to me it's just something he decided to say twice and was never interested in saying it again, or maybe forgot how to say that.

    ReplyDelete
  11. My son occasionally said a word or two as an infant, but after he started walking, he spoke less.

    My older son said nothing but the word "again" for 4 months straight, then dropped it and said nothing at all for months, and then started picking up words again. We were getting a bit worried toward the end (right before he had a relatively "typical" language explosion), but we mostly saw it as just his personality and his way of doing things.

    He definitely started acting more stereotypically "autistic" after his brother was born and, 6 months later, after he started preschool (two weeks of unusual tantrumming after pick-up, including a head-banging on the sidewalk incident). We'd never seen those behaviors before, and haven't seen them since. It didn't make him more or less autistic, but definitely made him seem more "classifiable," in a sense.

    What about only children who are autistic?

    I think having a sibling is just a common form of novel, easily identifiable stress that one can recognize happening at a particular time, as opposed to more subtle, on-going forms of stress, like, say, lack of solid sleep, or not being able to communicate as effectively as you want to.

    Though again, I'm pretty sure the point is not that stress might cause autism, so much as that stress perhaps can increase the "autistic" behaviors that are often pathologized. So, not that stress could cause language delay but more that stress could exacerbate communication difficulties, etc.

    ReplyDelete
  12. What about only children who are autistic?

    My son doesn't have younger siblings, BTW. But it would obviously be like any other potential factor, assuming there's something to it.

    ReplyDelete
  13. What is more logical to trigger "regression" in an autistic child - a stressful event or a minute amount of pathogens in a vaccine?

    Again, I beg the mercury loons to apply Occam's Razor. But they're so busy reinforcing their belief system (MERCURY DID IT!) among their little community that there's no chance of that happening in the next 19 years, at least.

    ReplyDelete
  14. He definitely started acting more stereotypically "autistic" after his brother was born and, 6 months later, after he started preschool (two weeks of unusual tantrumming after pick-up, including a head-banging on the sidewalk incident).

    I would've expected school to be mentioned in the surveys. Maybe it's not that common a factor regression is attributed to, or they just didn't think to ask.

    ReplyDelete
  15. I found the following about CDD over at the Yale Developmental Disabilities Clinic website, which is related to the topic of the post.

    Case Illustration

    John's early history was within normal limits. By age 2 he was speaking in sentences, and his development appeared to be proceeding appropriately. At age 30 months he was noted to abruptly exhibit a period of marked behavioral regression shortly after the birth of a sibling. He lost previously acquired skills in communication and was no longer toilet trained. He became uninterested in social interaction, and various unusual self-stimulatory behaviors became evident. Comprehensive medical examination failed to reveal any conditions that might account for this development regression. Behaviorally he exhibited features of autism. At follow-up at age 12 he still was not speaking, apart from an occasional single word, and had been placed in a school for the severely disabled.

    ReplyDelete
  16. Sibling regression is considered normal and no big deal in non-autistic kids. It doesn't seem unlikely that autistic kids would also have a reaction.

    ReplyDelete
  17. Joe, You can post this garbage on Tiesha's blog if you like. I pasted it here for you so you you wouldn't have to retype it. Your welcome.

    Tiesha,You should know that not all autism blogs a... Tiesha,

    You should know that not all autism blogs are "hysterical" like this one. See the Autism Hub for top-quality autism blogs, which thankfully also happen to be the most popular autism blogs on the web.

    There you will find, for example, Interverbal's blog, where he has listed a couple dozen articles that do not support an association between vaccines and autism. You will find my own blog where I've discussed the Verstraeten conspiracy theory here and here.

    If you're interested in finding out about what John is rambling about Simpsonwood, look for Skeptico's analysis of the Simpsonwood transcript.
    Reject

    ReplyDelete
  18. Mine is an only child who had a fairly significant regression around the typical 15 months- 2 years stage and multiple smaller ones as he has grown up. There doesnt seem to have been any major event which caused the big one and the smaller ones sometimes there has been something which happened at the same time which may or may not have been significant and sometimes there has not been or I havent known about it if it was.

    I think about this like him working his way through a maze. He's following a pathway when it comes to an abrupt end. He cant get through that way. So, he HAS to retrace his steps and find another way through. No point stalling at the end and either standing still or being forced through the hedge/ wall however much that damages him.

    I also find that post the smaller 'regressions' there will be a big burst of learning with important new skills being gained. I dont think about it too much because it seems to be part and parcel of his development(and ultimately a positive one, although I'll admit it took me several years to understand this about him).

    ReplyDelete
  19. Bonnie Ventura said...
    "I'm sure many of today's parents, panicked by autism awareness hysteria, see changes like that as regression and become terrified that their toddler will never speak"

    My dad and I had a conversation about this the other day. How nowadays kids are all supposed to develop "on time". There's such a hysteria devloping about it. It really strikes me as weird, and in my dad's words, "sick". The disturbing part isn't that people are addressing their children's unique needs and helping them along at their own pace, but that it's pathologized so much, to take longer to learn things, or to have much more difficulty than others in doing certain things. It's completely alien to me.

    ReplyDelete