Autistic Regression, Cognitive Impairment, and Severity of Impairment: Real Numbers

There's a tremendous amount of research literature that does not make it into public consumption. Coupling this lack of trickle down with a voracious need to feel certainty where none may exist, many parents faced with an autism diagnosis will gravitate towards those individuals who offer the certainty they are seeking. They find this certainty, these assurances, not with mainstream medicine or psychology, but with alternative medicine and snake oil salesman who offer guarantees that cannot be delivered on.

That's okay, though, most of the time, for the con men plying unsuspecting and dedicated parents. Throw in a clause that if it doesn't work (as one RNA supplement provider does), the parent must not have faithfully given the supplements exactly as prescribed. These charlatans have a keen understanding of how to keep the clients roped in, the sunk ship fallacy, guilt, self-justification, affect heuristic all combine to make certain that if the woo-seller gets them roped in initially, they are bound to stay. If they do manage to recognize they've been had, they're more likely to quietly slip away than to proclaim it at the top of their lungs.

One of the big selling points the anti-vaccine parents insist on is that they had perfectly normal developing children and within a magical six hour window everything is changed. Their child disappears before their eyes, loses all skills, and is diagnosed with autism. We know that vaccine reactions do occur, sometimes serious ones. It's an insult to parents who truly have undergone this to co-opt this story. And it does appear to be an unintentional co-option on the part of some of these parents. Hey, some parents who blame vaccines don't even go over the story, talk about it; they just say they know it's the vaccines.They had a perfectly normal child, they had vaccines, the child was later diagnosed with autism. Kid not vaccinated? No problem. Maternal mercury load did it. Or wait, change the story and insist all the kids are vaccinated.

Dachel claims thousands of diapered non-verbal teenagers who were perfect at two. I thought, as I have the time, that I'd go through the latest autism research and look to see if we're getting any better at identifying true autistic regression and the proportion of children diagnosed with autism who were developmentally on target and then suddenly regressed.

Wiggens et al. (2009) note that "questions regarding the number of children with an ASD who experience regression, the mean age at which regression occurs, and whether developmental delays exist prior to the loss of skills remain unanswered" (p. 360). To try to get to some answers, Wiggens et al."analyzed data from a comprehensive, population-based surveillance program at the Centers for Disease Control and Prevention (CDC)that systematically gathers and records behavioral and diagnostic information on children who display characteristics associated with ASDs" (p. 360).

For their study, Wiggens et al. looked at MADDSP ASD surveillance records: "Of the 285 children who met ASD surveillance case status, 49 (17%) had developmental regression documented in surveillance records. Of the children who met the ASD case status and had a previously documented ASD,26 percent had documented developmental regression. Forty-four of the children who met ASD surveillance case status and had document regression were boys, yielding a male:female ratio of 8.8:1.0.Age at time of regression was available for 45 participants.The mean age at time of regression was 28.2 months (median 24.0 months; mode 24.0months), although there was considerable variation about the mean (SD 18.9 months; range 1–91 months)" (p. 364).

When they compared these two groups (regression version nonregression), here's what they found:

"Children with an ASD with documented regression showed significantly more general developmental concerns at or before 36 months of age than did children with an ASD without documented regression...than children with an ASD without a documented loss of skills" (p. 365).

In addition, "Children with an ASD with documented regression were also significantly more likely than those without documented regression to have cognitive impairment" (p. 365). Of those with documented regression, 29 percent scored "average or above average cognitive skills" while 38 percent of those who did not undergo regression scored average or above. Wiggens et al. note that "children with an ASD with documented regression were rated by clinician reviewers as being more impaired than children with an ASDwithout a documented loss of skills" (p. 366).

The question of cognitive impairment and levels of functionality come up alot on the blogs, forums, and various threads. In this study, which looked at population data: "Of the 268 children who had cognitive test data available in surveillance records, 40 percent scored in the range of cognitive impairment (IQ ≤ 70), and 60 percent were not cognitively impaired. Fifty percent of children in the sample were rated by clinician reviewers as moderately impaired, 29 percent were rated as mildly impaired, and 21 percent were rated as severely impaired" (p. 364). Contrary to certain individuals insistence that the rate of cognitive impairment is 80 percent or so, this study which actually looked at the data gathered by the "Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) at the CDC" found a rate of 40 percent. And they only found 21 percent being severely impaired, also contrary to what AoAers would have you believe.

In their discussion, Wiggens et al. write:

"Using a population-based surveillance cohort, we found that the percentage of children with autistic regression ranged from 17 percent among children who met ASD surveillance definitions, to 26 percent among children who met ASD surveillance definitions and had recognized ASD documented in surveillance records. Our estimates are in line with those from previous studies (Rutter and Lord, 1987; Siperstein and Volkmar, 2004)and suggest that autistic regression is more likely to be noted when a child has a clearly documented ASD diagnosis. This pattern may explain why higher prevalence rates for autistic regression are found in studies that use clinically referred samples (Davidovitch et al., 2000) and implies that any loss of social or language skills is an important ‘red flag’ for ASDs (Filipek et al., 2000). Furthermore, children in our sample who experienced autistic regression were more likely to have cognitive impairment and were rated as significantly more impaired by clinician reviewers.These results, coupled with the finding that the male:female ratio increases more than 50 percent in autistic regression (Bernabei et al., 2007), lend credence to the idea that autistic regression is related to severity of disability and is much more likely to occur in boys than in girls" (p. 369).

The folks at AoA sell this wholesale idea of children who were developmentally fine, perfect, etc, with no problems prior to vaccination and then bam! the vaccines change it all. Without looking at potential causation, just at the data collected, Wiggens et al. found that even in these cases of documented regression, that "Almost half of the children with autistic regression in our sample were noted to have developmental concerns prior to the loss of skills, which supports previous research using clinical interview data" (p. 369).

The subpopulation of regressive autism is an important one to examine, but it is highly unlikely that vaccines will be borne out as the responsible agent. And with almost half of the cases exhibiting developmental concerns, there's an inherent call to skepticism here.

What needs to be examined is the potentiality of seizure activity in these children, which could account for a loss of skills: "Seizures or seizure-like behaviors have been associated with autistic regression in some children (Tuchman and Rapin, 1997).We found that children in our sample with documented regression were significantly more likely than those without documented regression to experience seizures or seizure-like behaviors. Moreover, seizures or seizure-like behaviors were specifically noted to occur before the loss of skills in 8 percent of records with documented autistic regression.These findings corroborate retrospective
parental reports that identify seizure activity as a trigger for loss of skills (Goldberg et al., 2003; Shinnar et al., 2001). These findings also highlight the need for future clinical research that examines the relationship between seizures and subclinical seizure activity and autistic regression" (p. 371).


Wiggins, L., Rice, C., & Baio, J. (2009). Developmental regression in children with an autism spectrum disorder identified by a population-based surveillance system. Autism: The International Journal of Research & Practice13(4), 357-374. doi:10.1177/1362361309105662.

(And, yeah, this is my idea of a good Friday night: Stargate Universe, popcorn, rootbeer, and reading journal articles and writing a research-based blog).


farmwifetwo said...

I fall under the "had I known then what I know now" about vaccines I probably would have waited until we started daycare... 2, 4 and 6mths IMO is a weee bit early in hindsight. But as they say "hindsight etc".

What I wanted to discuss was IQ testing. Harold's demanding it be part of the dx and IMO that's wrong. Yes, little boy's IQ is btwn 60 and 70 now at age 8.5. BUT, he reads at Gr 3.5, comprehends at Gr 1.5 and math is K. This all spending an hour, sans support with a stranger... As the psychometrist said "He did very well". He's not developmentally, nor intellectually the 2 to 3 yr old range the IQ test claims.

Also, it's a well known fact that a child with autism may do well or may not wrt development or intelligence and to claim the severe end at at the age of 3 is going to be severely MR at 18... is a lie at best.

Also here to get ODSP, one must be dx'd as developmentally delayed by the IQ test. The savants are dx'd with it if they cannot live independantly... and they are brilliant... kind of takes the point out of the test, doesn't it.

Sirenity said...

Wonderful post Kim.
I feel for parents who watch their child learn skills then appear to loose them and i understand how they might entertain the idea that some event is to blame.
It was wonderful to read your analysis of the studies done. It is interesting to see the difference between analytical observation and parent's memory.

Roger Kulp said...

I belong to a number of Yahoo! groups for autism,and in those groups that make up the general autsm population,regression is kind of unusual.I never calculated it,but it's probsably 10-15% at the most.An these re mostly biomed mothers.

Regression seems to be mostly limited to those who have other issues going on besides autism.Metabolic disorders,immune problems,inherited infections,and the like.Even though the hardcore antivaxers woud like you to believe everybody regresses,it just ain't so.

I was in diapers until just before I started the fourth grade,but I always chalked that up to developmental delay,and not regression.Regression means losing the ability to talk,head banging, destroying things,etc. after a fever goes away.Immune stuff, which can work just as well as seizures.And once you regress once,a fever or aseizure can trigger it again at any time in your life,it's a continual threat that hangs over your head.

I have not studied seizres that closely,but 24 months is about right for the time my sister had her first seizure.It happened when I was at school,but I know from what my mother said,it as preceded by a very high fever,with weird nodules on the skin all over her body.

Roger Kulp said...

Oh and in ase you're wondering,I do have both metabolic and immuune isues.I learned thelatter from my new doctor.Not a DAN!,btw.

Kim said...

Here is my son's account. My son was born fine. At 7 days old he receives the HepB which he did not get in the hospital. The next day he develops neurological symptoms (I don't think it is the vaccines at that time because it is not on the possible side effects on CDC vaccine handout) and I make an appointment with neurologist and have to wait over two months. The neurologist takes a few months to get the report to ped (no tests were done - just 5 minute pointless clinical observation) so my son doesn't get next set of shots until 5 months, 2 weeks after he started babbling and he loses his babbling 24 hours after shots. Again, not side affect of vaccine on CDC leaflet so I continue with vaccine schedule at 7 & 9 months and my child meets all his milestones on time - even babbling returns at 10 months, says his first word at 11 months. At 10 months I see a news show about Thimerosal in vaccines and research online and find out about the warning sign of autism and it mentioned LOSS OF LANGUAGE AT ANY TIME. I knew then my child had autism even though he showed no other symptoms (CHAT) and a well respected autism expert at 11 months after thorough testing said there were no signs. It was then when I looked back at vaccine schedule that I realized the two times I noticed onset of troubling symptoms were within 24 hours of vaccination. So I did not vaccinate any further and my child still regressed quickly at 17 months and lost nonverbal & 50 word verbal communication and social skills. Seizures didn't start until 22 months. However, GI issues did start at 11 months following only round of antibiotics for bronchitis and immunology testing at 25 months showed no titers to any vaccines given plus 9 IgE food allergies which I think started around 12 months of age. I definitely have documentation of neurological disturbances within 24 hours of vaccination, but it was not the immediate trigger that caused autistic regression. I'm guessing the damage was already done but didn't manifest itself until something went haywire during a period of synapse formation, pruning or myelination in the brain. I am trying to research what goes on in the brain at that time and see how it can correlate to autistic regression. I am not discounting parents' report of autistic regression following vaccination - it just wasn't the case for my son.

KWombles said...

Sorry for the delay in responding.

FW2, thank you for sharing. I think that Harold conflates ID/cognitive impairment with autism, rather than realizing it is a co-morbid condition in somewhere between 1/3 to 2/3 of the cases. The problem with standardized testing of autistic individuals is that noncompliance creates lower scores that don't/may not accurately reflect their capabilities.

Roger, thank you for visiting and offering your insights; they are always welcome.

Sirenity, with our youngest, we noticed a loss not of language or a real regression, but a loss of social behavior; she stopped kissing, she stopped what little eye contact she had. Or, more likely, we noticed the lag as time passed and we had no choice but to admit it. Memory is, indeed, a fickle thing, and I tread lightly when remembering back to something not contemporaneously written down (and even then, you have to consider the blinders we wear, what we are willing to see and admit.


Thank you for sharing your story. It is much appreciated.