Gifted Issues Discussion homepage Forums Twice Exceptional Hyperlexia and academic achievement

I also see far too much of this. In particular, I seem to have had a chain recently of highly-verbal girls (some 2e) misidentified with conduct or personality disorders, usually by therapists.

I agree that kids are not diagnosed properly these days, but I don't agree that ADOS can provide diagnostic stability. ADOS consists of different parts and they all sum up to make up a total score. Some of them, like communication can improve dramatically in kids over the years, changing the diagnostic outcome.

My son isn't an outlier. He had three ADOS tests, different modules, same administrator. Two years apart, starting at 2.5yo. He easily qualified for PDD-NOS five years ago, under DSM-IV, based on ADOS, because his language delay and communication part was very high. As his language improved, his ADOS scores and his diagnosability went down, with basically only socialization issues remaining, not being sufficient for a dx on its own (it might have been enough for SCD but not AS). His ADOS was borderline at 4.5 and was below threshold at 6.5.

Not surprisingly, kids whose presentation is consistent with former PDD-NOS (language delay must be present), that are diagnosed before 36 months can "beat" ASD by the age of 8-10, when their verbal issues become undetectable and their social skills improve as a result of communication improvement.

Again, PDD-NOS was discarded in the DSM-5 due to a number of factors, and thus can't be factored in when looking at current autism rates and the ability to "beat ASD." If you "beat" ASD, you never had it. That's not how ASD works.
We're going to have to agree to disagree on the ADOS-2. I'm a research reliable examiner of it and use it daily. I worked with one of its authors. Studies, along with my own personal experience, show that that measure and the ADI are the most solid measures of ASD out there. They have fantastic reliability and validity, consistently across repeated studies (including longitudinal). Of course, they should NEVER be used on their own to make a diagnosis and any decent clinician knows this. As for your comment about the ADOS-2 and language, each module accounts for language disabilities. ASD language difficulties are quite different than standard language disorders and the ADOS-2 and clinicians know this very well.
I'm glad your son was an outlier, but he's just that: an outlier, and can't be compared to the whole of the autism population.
But, I'll repeat: any parent who has a concern for autism should not accept a diagnosis without either the ADI or the ADOS-2. Full stop.

I agree with you that ADOS is the best test that exists, what I was diasagreeing with is the fact that once diagnosed by ADOS means always diagnosed.

I think ASD can be divided unevenly into groups. One would be a broad group with some deep genetic involvement - CNVs in nuclear DNA, mitochondrial issues etc, when recovery from ASD is as likely as from Down syndrome. Another group is when the ASD is a result of some epigenetic problem during prenatal or perinatal stage of development, that introduces a delay in the development rather than a permanent impairment. All environmental causes, maternal causes, immune disorders, prematurity etc would fall here.

I know for a fact what caused my son's delays. I have PCOS and very very likely had high fetal testosterone levels, that have been shown to produce some autistic traits, lateralization changes (hyperlexia?) and speech delays. Yet, the exposure to FT was limited (only nine months) and given child's brain plasticity, was reversible through intense postnatal therapies, life experiences etc. Was it not a real ASD then if it can be reversed? If a child can recover from a brain trauma, why can't we accept that a child like mine can recover from ASD?

He may not have a typical outcome, but there are hundreds of boys like him. Whether you call this hyperlexia III or PDD-NOS or something else, it is certain to me after dealing with this firsthand, that with a lot of effort, ASD presentation can change over time and no test given at the age of 2.5 can accurately predict where the child will be at age of 16. It is true for all intelligence tests and it is true for ADOS.

This is very interesting, since I also had high testosterone while pregnant and DS was also one of those hyperlexia 3 kids. His sister is genetically unrelated, but I still carried the pregnancy. The two of them are remarkably similar...for instance PRI scores in the 140's on the WISC IV. Both of them early readers. What are the odds that would occur in two genetically unrelated individuals? DD has ADHD but never had any autistic like traits. But she's also female and that probably plays a role as well.

My daughter has 144 in visual spatiaI on WISC-V (no PRI in V) and has attention issues, but she wasn't hyperlexic. Also zero autistic traits. So I'm sure girls are affected too, but in a different way. I think my mom had it as well and I'm an engineer with a very distant BAP.