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[quote=Anonymous][quote=Anonymous][quote=Anonymous]Has anyone had their child retested after a dubious ASD diagnosis? My child has many delays due to being born 15 weeks premature, including speech delays. She was tested for ASD a week after her 2nd birthday (so she was not yet 2 developmentally, adjusting for prematurity). They diagnosed her as severe ASD, below 1st percentile in expressive/ receptive language, and likely to be cognitively impaired and non-verbal. Obviously, I was devastated.

I had doubts about the diagnosis (by a psychologist who finished her training in 2017, and seems young and clueless about toddlers) from the beginning. A very experienced and reputable pediatric neurologist who saw her a week before she was tested for autism thought she only had an expressive language delay. Even at the time she was tested, she was talking in two-word phrases and making eye contact 60% of the time with her regular weekly speech therapist-- but she didn't make ANY eye contact or say a word to the new speech therapist she had never seen before during ASD testing. All other tests done by pediatrician, NICU follow-up team, early intervention, etc., show that she is cognitively normal (50th percentile) for her age, so the ASD test results indicating likely cognitive imapirment make no sense. When I questioned that, the psychologist who tested her for ASD said, "Well, she must have regressed since that other testing, which is an obvious sign of ASD." But tests done months AFTER ASD testing also show that she is cognitively normal, so this "regression" theory sounds like BS to me.

Within 3 months after her diagnosis, she is talking in sentences, doing imaginary play, discharged from OT because she doesn't actually have any sensory or fine motor issues, and her speech therapist (who worked at an autism school for 3 years) thinks she should be re-evaluated for ASD. She is very social with her twin sister, and asks for her as soon as she wakes up. No behavior problems or sleep problems. She is very sweet and affectionate. Yet, when I point this out, all of the (many) people who are making $$$ from treating her so-called autism say things like, "Talking doesn't mean she doesn't have autism," or "Autism looks different in girls," or (my personal favorite), "You need to understand that it's a spectrum."

Has anyone in a similar situation had their child retested? Where did you go, and what type of professional did you see? Early intervention has recommended both psychologists and neurologists to me, but the local options aren't great. I am in the Midwest (former DC resident), but willing to travel anywhere for the most accurate assessment. TIA!

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OP, I think you really know the answer here, if you think about it. Your child had one really lousy assessment by someone who doesn't know what they are doing.  A good friend had her child assessed at a big children's hospital in the Midwest. The child was diagnosed with severe autism. They told her and her husband they should think about institutionalizing the child, as he would be a terrible drag on the rest of the family and impossible to educate. The child was about 3.

Flash forward 14 years, and this child is a happy, typically teen excelling in school and applying for colleges. He drives, has friends and is an absolute joy.

They are one of the families who went to see the Camaratas back when they worked together at Vanderbilt. It was there they were told their child was not autistic but had a receptive language disorder. So that set them on a totally different path than the one they were on when they got the lousy diagnosis.

If I were you, I'd take a deep breath, skip the ABA if you feel it's a bad fit (ABA teaches discrete skills. It's not good for teaching conversational language.) Think about your child and do what makes sense. ABA is really meant for kids who don't readily imitate. If your child does, then she can be taught regularly and you don't need the stress and expense of ABA.

Schedule an appointment when your child is about 3ish with Mary Camarata if you can. She can be difficult to reach as she's overwhelmed and a sole practitioner, but once you are in her presence, she'll be totally focused on your child.

The idea that you can label kids with ASD and they magically get the services they need is not true in my experience. The preconceptions of the label drive the therapy.

Good luck. You've got this. Your original post shows you know the score.

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It depends on the insurance regarding the label.  Your insurance is probably different than ours and ours was very generous with the right label and from the right person.

Once the receptive comes in, kids become very different people.  That is the big difference between ASD and language disorder.  Kids will later on have struggles but those struggles really vary by child.  It also helps if the kids have higher IQ's.

We got no after support from Dr. Camarata.  We got a lousy report.  He was a great tester and really helpful in person and took the time to answer all our questions but for us, he had nothing to offer as he agreed with everything we were doing and agreed with the providers and liked what they were offering/doing from the reports and what we said.  But, for OP, I would go at 3-4 to check in to see if the services are meeting their child's needs and parenting advice to just talk through thing with someone who understands your child.  They are too busy to be invested anymore in individual kids.[/quote]

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