Autism, Vaccines, and What the Words Say

I've been working on an essay about a novel by Lois-Ann Yamanaka, Father of the Four Passages Yamanaka has a son on the autism spectrum and this 2001 novel (her fourth at the time) includes an autistic child. Sonny Boy---Solomon is his given name---is the fourth son of Sonia Kurisu, the novel's protagonist and first-person narrator. Sonia is in her twenties at the time the novel starts and living in Las Vegas, where she works as a lounge singer while trying to finish her degree in fine arts at the university. She's far from home, which is Hawaii and, specifically, Hilo, and haunted by many ghosts who draw her back.

Writing about how Yamanaka uses language to create her characters, Sonny Boy and Sonia, I've also been thinking about how the language we use in less literary contexts---in everyday writing about autism---can shape our understanding of autism.

As Liz Ditz at I Speak of Dreams has noted, quite a few people have been commenting on the discovery that data in the 1998 study on the MMR and autism were altered. What stands out to me is what the medical records reveal about the "regression" that the children in the study are said to have experienced. As noted in Sunday's Times of London, developmental and other delays were noted in many of the children prior to them receiving the MMR vaccine:

(Emphases in this admittedly long quotation from the Times of London in italics are mind.)

The first [inconsistency], in the Lancet tables, concerned the first child in the paper: Child One, from Cottesmore, Leicestershire. He was 3½ years old and the son of an air force pilot. In November 1995, his parents had been devastated after receiving a diagnosis of autism.

“Mr and Mrs [One]’s most recent concern is that the MMR vaccination given to their son may be responsible,” their GP told the hospital in a letter.

In the paper this claim would be adopted, with Wakefield and his team reporting that Child One’s parents said “behavioural symptoms” started “one week” after he received the MMR.

The boy’s medical records reveal a subtly different story, one familiar to mothers and fathers of autistic children. At the age of 9½ months, 10 weeks before his jab, his mother had become worried that he did not hear properly: the classic first symptom presented by sufferers of autism.

Child One was among the eight reported with the apparent sudden onset of the condition. So was the next child to be admitted.

This was Child Two, an eight-year-old boy from Peter-borough, Cambridgeshire, diagnosed with regressive autism, which, according to the Lancet paper, started “two weeks” after his jab.

However, this child’s medical records, backed by numerous specialist assessments, said his problems began three to five months later.

The difference between 14 days and a few months is significant, according to experts. Autism usually reveals itself in the second year of life, when the vaccine is routinely given. If there was no sudden onset after the MMR injection, as claimed for the “syndrome”, the condition could be ascribed to a conventional pattern.

More apparent anomalies lurked among the following 10 children, as they arrived at the Royal Free hospital between September 1996 and February 1997.

Only one was a girl, Child Eight, aged 3, from Whitley Bay, Tyne & Wear. She was reported in the journal as having suffered a brain injury “two weeks” after MMR.

Her medical records did not support this. Before she was admitted, she had been seen by local specialists, and her GP told the Royal Free of “significant concerns about her development some months before she had her MMR”.

Child Six, aged 5, and Child Seven, aged 3, were said to have been diagnosed with regressive autism, with an onset of symptoms “one week” and “24 hours” after the jab respectively.

But medical records show that neither boy was “previously normal”, as the Lancet article described all the children, and that both had already been hospitalised with brain problems before their MMR.

Child Six received his vaccine at the age of 14 months, but had twice previously been admitted with fits.

Child Seven was given his at the age of 20 months but, again, problems already showed.

“He developed well, had social smiling and was responsive to his mother,” a psychiatrist wrote. “But he began to have pale episodes and ? [sic] petit mal [convulsions], and had an EEG [an electroencephalogram, a common test for epilepsy] done at 15 months, which was abnormal.”

Meanwhile, neither was diagnosed with regressive autism, or even nonregressive classical autism. Three of the children had been diagnosed with Asperger’s disorder, in which language is not lost, and which is not regressive: nothing like what afflicted One and Two. This was also the diagnosis for Child Twelve in the series, a six-year-old boy from Burgess Hill, West Sussex.

And Seven would be diagnosed with an odd behavioural condition called “pathological demand avoidance syndrome”. This usually manifests as social manipulativeness, and is nothing like the “syndrome” being claimed. It is sometimes marked by a child putting his hands on his ears, while singing “lah-lah-lah, can’t hear you”.

Accounts of a child changing "suddenly" and "overnight" are regularly given by people claiming that vaccines or something in vaccines "caused" a child to become autistic. Such claims are not surprising: Parents aren't saying that they think a vaccine or something in a vaccine "causes" their child to "become" autistic out of the blue. But looking closer at cases like those of the children in the 1998 Lancet study reveals a pattern, of a claim of "regressive autism" after a child received a vaccine when, in fact, the child had already presented with developmental delays, signs of epilepsy or seizures, or other concerns. For instance, in the Autism Omnibus "vaccine court" hearing in June 2007 for then 12-year-old Michelle Cedillo, videotapes showed that she had already been showing signs of delayed and/or unusual development prior to receiving her vaccines. (A transcript from the most recent Autism Omnibus trial can be read here.)

Dora's and my first action on this sight----Promote Respectful Language---asked people to think at least twice about the language they use when talking about autism and when talking to individuals on the autism spectrum. One reason that the alleged "link" of vaccines to autism is turning out to be so detrimental is that this hypothesis of autism causation suggests that having autism means an individual is "damaged" or has been "injured," or even "poisoned"; that autism is something that an individual can "get." Autism, it's implied, is analogous to some sort of external agent, some thing "outside" a child, that somehow "gets into" him or her and "makes" him or her "become" autistic.

And hence the need to look carefully, as Brian Deer and many others are, at what's been said about what causes autism, and what autism is.

Photo by nicasaurusrex.