I’ve talked about LB’s broader diagnostic journey before. Today I’ve been thinking about the way he has been put on (and off) the autism spectrum. I had a shufty through his medical records (a source of bafflement, frustration and ‘what the fuck?’ moments) and traced autism through the various reports. So, starting when LB was a toddler;
He became quieter and happier when he spotted the wheels on my mobile chair, and spent 10 minutes pushing the chair backwards and forwards with his eyes fixed on the wheels. (Speech and Language therapist, August, 1996)
Classic, stereotypical autistic behaviour flagged up, but the word autism doesn’t appear till the following year in a letter from the GP to the paediatrician;
Happily* he does not appear to have fragile x, although his blood tests reveal a Klinefelter’s mosaic. I am not sure if this blood finding is an incidental finding or whether it does underlie some of his developmental abnormalities. I do, however, suspect that he may have a degree of autism. (GP, March 1997)
Very Sherlock Holmesy of the old GP. The following month, autism is explicitly mentioned in the report from LB’s first annual one week paediatric assessment. In the summary statement of the two page report;
LB has Klinefelter mosaicism and global developmental delay with more severe language and socialisation difficulties. Aspects of his behaviour are on the mild end of the autistic continuum. (April, 1997)
We first met Dr X at that assessment. Dr X had a reputation for being a bit of an expert in autism. Well, he’d been a talking head on the old telly a few times at least. He seized on the fact that LB had red ears and announced that his autistic behaviours related to his leaky gut. The Hunter Gatherer Diet would sort him out. Well that was red ears to a bull. Dr X was the expert and we could nail this autism malarky. The HGD it was.
After an appointment with Dr X a few months later, we were off. All foodstuffs, other than chips, were excluded for two weeks. Then one foodstuff was was reintroduced every two weeks. Daily tables were completed, detailing behaviour, bowels, sleep etc etc. The aim was to identify the food culprits messing with LB’s gut. We even cleaned his teeth in bottled mineral water for the cornflake stage. Totally batty, I know, but you’ve got to understand what the sniff of a cure means** to parents in those early, early days.
It was miserable, time consuming and expensive.
But, hang on a minute… at the next annual assessment;
No autism??? What’s happened? On page 2 of the report;
LB was assessed by Dr X who found he was moving out of his autistic behaviour and making good developmental progress. (June, 1998)
Well, that is truly amazing. Dr X was to keep monitoring LB on his diet (3/4 months in at that stage). Just the global developmental delay stuff left to crack then.
Oh. Not so fast. Another letter in the records. Dated the following year.
Through a most unfortunate series of administrative omissions, I did not follow LB up as I intended and his mother made a complaint about this to the hospital. (Dr X, April 1999)
Dr X didn’t see LB after the assessment detailing his ‘improvements’. By accident apparently. The pages of his diary stuck together*** and he didn’t get my messages chasing him up (in a hunter gatherer induced fog of despair). The ‘recovery’ story was in ruins.
The following month, May 1999, after the lengthy complaints procedure, it was annual assessment time again. Without Dr X this time. LB was back on the spectrum.
And has remained so, ever since…. I think.
*’Happily’? I wonder if he wrote this because I’d originally pegged LB as having fragile x so began the process of diagnosis by asking for a fragile x test.
** And costs.
**Yep. He actually said that in the meeting with the hospital adjudicator person.