This confusion is likely to affect misdiagnosis rates until there is a definitive test for AS, and there may never be a definitive test for AS. ? I have read that FXS is the major cause of inherited intellectual disability; so what are the implications of FX people misdiagnosed as LFA and for
- their families?
- the Autistic population?
- the Fragile X community?
- the autism curebies?
- the autism anti-curebies?
- researchers (especially AS researchers)?
-treatment providers?
-policy makers?
In experiments on AS samples, what degree of sampling error exists because of misdiagnosed Fragile X's? What percentage of the supposed "LFAs" are actually Fragile X? Does this influence policy and the politics of AS? How many claims and conclusions about AS are unreliable because of the confusion?
If "a cure for autism" became mandatory for those labelled LFA, what would be the implications for the misdiagnosed Fragile X's who were subjected to treatment and showed no improvement at all? What if this "cure" seriously harmed the non-autistic Fragile X's? Who would be responsible? Would damages be payable? What if the subjects were forced to cure without their consent and this happened? Would it just be an unfortunate outcome and brushed under the carpet?
Curebie discourse appears completely oblivious to any possibility of adverse consequences. (Thalidomide was the great new cure for morning sickness of its time; it turned out very badly indeed). The simplistic assumption that all "LFA" people would automatically want a cure and a cure would be harmless is over-promoted in way that seems naive and paternalistic to me; curebies tend to view dissenters as HFA's who couldn't care less about anyone with challenges different or greater than their own. I think that's a very dismissive idea which also rests on unproven assumption.
Lots of issues in this opening post, and if there are members who were misdiagnosed and later re-diagnosed with FXS, those accounts would be interesting if you can share them. Meanwhile here's a brief link about the confusion of FXS and ASD:
https://fragilex.org/fragile-x/fragile- ... different/
01 Oct 2016, 3:45 am
