ASD (mis) diagnosis vent
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Anonymous
Agree with this too. it's striking that none of us ever get to see *experts* on ASD. We get to see therapists and psychologists etc who are experts at providing therapies. How often do people come on this forum asking about who they can go to for comprehensive case management for their ASD or ADHD kid, only to be told there is no one who is a comprehensive expert. Just people offering therapies, and it's up to the parents to pick what therapies they think will help? This is because even the therapists aren't experts at ASD. They don't really know the nuances. They only know about the proposed treatments that they are experts in. My hunch is within 30 years, there is a new altogether different diagnosis: neither ADHD nor ASD, but a diagnosis that so many of our boys fall within that looks a little ADHD with social and emotional regulation issues, but looks nothing like what ASD used to look like 15 years ago (ie now level 3 or whatever ASD is). Basically, Aspergers. As a stand alone diagnosis again. Not ASD spectrum. |
Anonymous
| OP here. Thank you, everyone, for the support and recommendations. |
Anonymous
Never knew it was possible, thank you! As to the groups, I feel like his provider sees my reluctance as a sign of laziness or distrust. |
Anonymous
A similar thing happened to my kid at a $5k neuropsych evaluation. DC thought they were being prodded to provide a dark (made up) story and the next thing you know they are depressed. They said the evaluator kept prodding them to ask why this person in a picture looked sad when they just had a neutral expression. And, this was one of the firms often recommended here. |
Anonymous
I’ve often wondered about this as well, too. Everything being on a spectrum seems often unhelpful. A psychiatrist told a sibling that our brother was on the “sociopath” spectrum because he wasn’t always good with helping his wife around the house and didn’t bond well with his first kid (he was a surprise and they were just married), although he has a good relationship with his younger son who came along 4 years later. So now my sibling thinks it is valid to think our brother is a sociopath, since “it’s all a spectrum.” And, no, he doesn’t know about this. |
Anonymous
OP here. We also used a well-known practice, but the evaluator was new. Maybe that's the mistake. |
Anonymous
I completely agree with the traits approach. |
Anonymous
You are uninformed. 1. Of course you should have your child be assessed by an expert. A psychologist with a PhD and experience who specializes in autism and ADHD. We used Dr. Henderson at Stixrud. She does not provide therapy. She did not recommend any particular therapist. Her reports mostly focused on recommendations for services and accommodations in school. 2. But the most important point is that you don't seem to understand that research is being done as we speak, and has barely started to scratch the surface, since mental health has not been studied with the scientific method for nearly as long as diseased organs! So all the labels might change one day, not because the scientists of today are stupid and the system is rigged and wants your money... but because scientific research builds on the results that have come before, and humans' mental health is PARTICULARLY difficult to study. It's not like a mice you dissect in the lab, which is what I do to conduct research on the immune system. Here you are dealing with subjective accounts, possibly recalcitrant patients, difficulties of conducting large-scale studies, the inability to see much inside the brain, and the infinite power of the human mind to close itself to all suggestions of treatment. 3. It's understandable that you would feel frustrated at how labels are applied, the suggestions you're given for treatment, and how slow research seems to progress. Cancer patients feel that way too, you know, and in the meantime they die. But there's nothing any of us can do about it except always encourage and vote for research funding. And maybe if one of your children wants to become a research psychologist, they can actively move the science forward. |
Anonymous
Perhaps, in fact, you are just an ass and I’m not informed. That someone diagnoses a kid with ASD means nothing these days. For all these “asd-lite” kids, we all could find ten experts who would diagnose and ten who would not. The diagnosis is meaningless. That’s the experience of so many on this forum. If a diagnosis for these kids is as literally as random as a coin toss, perhaps that tells us that the experts diagnosing them are perhaps not as expert as we give them credit for. |
Anonymous
It’s absolutely not as random as a coin toss. For many of the autistic kids who are less apparent as autistic externally, understanding their differences and why they are the way they are will help them and their mental health throughout their lives. I’ve read and heard countless stories of adults realizing their diagnosis, especially women, and how it helped them and in some cases even saved their lives. All these people would be considered this “asd-lite” or “you don’t seem autistic” types. With kids there’s only so much we can gather ourselves to understand their inner world. If you are questioning the diagnosis, then question it to the providers that you are paying thousands of dollars. Have them really explain it to you clearly so you can accept this too. They must meet certain criteria if traits in the DSM, but it is often nuanced detective work when it is subtle. Excellent providers, such as Dr Henderson, know the right questions to ask parents, teachers, the right things to observe, etc. Also, a diagnosis can be changed as the child gets older and the environment demands exceed their capacity to handle it. This includes more complicated social rules as kids get older, challenges managing life as there are more demands, etc. |
Anonymous
My DD was mis-diagnosed with ADHD about 6 years ago, and this Februrary, at 20 years old, she was found to have NO ADHD but she is ASD. Which, ironically, my gut told me she had ASD and that's why I had her tested in the first place, and also my gut told me the ADHD dx didn't fit, but went along with it. So now with the ASD dx, my DD and I and her psychiatrist and therapist all agree it "fits" But the meds stayed the same, OP. So like PP said, treat the symptoms your DC has, regardless of the label. |
Anonymous
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My DD is on the waiting list for ASD evaluation. I don't see any signs pointing to ASD diagnosis in her but they tell me ASD symptoms in girl are different. They consider genetic factor that FIL, BIL, DH and DS have ASD/ADHD, and they don't want to miss DD in case she has it. I can tell that DD possibly has ADHD.
My gut feeling was that DS had ASD when he was tested in the first place when he was little, and they did not give him official ASD dx until he got older with extra evaluation follow ups. He was talkative, social and outgoing, but it was all other little details (inconsistent eye contact, miss some social cues etc) telling me that something was wrong with him. School thought that ASD dx was wrong, but they agreed that he had ASD when they got to know him more a few years after. It was bad that a teacher thought that he was just a jerk one year and she did not agree that he had ASD (all excuses to his behavior in her eyes). |
Anonymous
NP. The diagnosis is not meaningless and it's not random but it's not definitive for some kids. Even experts might ask different questions on different days, leading to different answers, or a child might present differently on different days. ASD like many mental health diagnoses have some subjectivity built in by definition. Your criticisms make no sense. |
Anonymous
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OP,
Evaluators like to err on the side of trying to give a diagnosis when they can so they do look for signs in order to justify a diagnosis. Many parents want this because it can help kids get insurance services or an IEP. Our child went to a highly respected practice (the equivalent of KKI, Children's National or Yale) when we were living in a different state and the evaluator was really frank about it. |
Anonymous
an autism diagnosis should not take “nuanced detective work.” It is by definition a difference in social communication that causes significant clinical impact. |