best place for second opinion on ASD diagnosis?

[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!

[Anonymous]

At this age, what is the difference in therapy used to treat an expressive language delay vs. autism?

She is only around 27 months?

[Anonymous]

Absolutely, I'd have her re-tested! By a clinic that uses a multi-professional approach, at a major children's hospital. They always say "trust your gut" with this stuff, and your gut is telling you misdiagnosis, and you seem to have good evidence of that.

[Anonymous]

Where is the nearest Children's Hospital? That would be where I would go.

[Anonymous]

Sometimes the diagnosis doesn’t stick. The child outgrows it. Or they were just wrong. Some people think my son has asd some think he doesn’t. Regardless we push forward with therapies and such. Initially we hated having that dreaded diagnosis. Now it doesn’t bother us so much. He is not typically developing but has lots of strengths but has lots of areas of deficits.

[Anonymous]

Just be careful, A lot of times the ASD diagnosis gets you insurance coverage and early intervention through the schools...take the label if it helps you get coverage and help!

[Anonymous]

Childrens or Kennedy Krieger. agreed that the ASD label will help with insurance and etc for therapies.

[Anonymous]

Anonymous wrote:Just be careful, A lot of times the ASD diagnosis gets you insurance coverage and early intervention through the schools...take the label if it helps you get coverage and help!

Exactly. If she's getting the therapies she needs why care so much about the label?

[Anonymous]

Anonymous wrote:Sometimes the diagnosis doesn’t stick. The child outgrows it. Or they were just wrong. Some people think my son has asd some think he doesn’t. Regardless we push forward with therapies and such. Initially we hated having that dreaded diagnosis. Now it doesn’t bother us so much. He is not typically developing but has lots of strengths but has lots of areas of deficits.

This is the case for us, as well.

My DS8 was a preemie, too. I will say that being a preemie parent is hard—you never get to enjoy any milestone without somebody reminding you of how far they have to go to catch up. I still struggle with wanting to get the correct diagnosis—especially after seeing so many doctors and specialists over the years.

That said, learning and attention issues may not be seen until the early elementary years—it might be worth waiting to maximize the benefits available to your DD, whether you use them or not. As backward as it sounds, it might be easier than trying to push that rock uphill later on when issues emerge but you have to fight to get services.

[Anonymous]

I’m not sure I’d be in a hurry to have more testing because you may not get a definitive answer. My DD, age 10, was just diagnosed with ASD by a neuropsychologist a few months ago. One developmental pediatrician disagrees with the diagnosis. Another says it’s probably correct, but not useful because interventions for Autism are inappropriate for DD because she’s too high functioning. My DD has no history of speech issues and is social (though awkward and her behavior is often odd), is extremely empathetic and is in a gifted program due to her very strong verbal skills. She and her neurotypical twin didn’t start speaking in sentences until they were your daughters’ ages and no one was concerned about it because multiples often talk later. Trust your gut because the specialists are experts in disorders but you are the foremost authority on your DD.

[Anonymous]

I think it probably doesn’t matter, as a practical matter, if she has ASD or not. So I would wait to reassess until she’s a little older. You may never get a definitive answer or unanimous agreement. But some of the things you mention as counter-evidence, like being social and affectionate, are common in children with ASD, so you also may have a skewed sense of what the current diagnostic criteria are.

[Anonymous]

OP, I'm confused from your post. How long ago was the previous evaluation?

Whatever her ultimate diagnosis, it sounds like she is already functioning at a higher level than you were led to believe she would and she is in a developmental growth spurt right now. That's great. Rather than focus on whether or not the ASD dx will stick, because there are plenty of very high functioning girls with ASD, maybe focus of getting a comprehensive follow up eval 6-12 months from now to help you decide what to do next for her.

[Anonymous]

Anonymous wrote:I think it probably doesn’t matter, as a practical matter, if she has ASD or not. So I would wait to reassess until she’s a little older. You may never get a definitive answer or unanimous agreement. But some of the things you mention as counter-evidence, like being social and affectionate, are common in children with ASD, so you also may have a skewed sense of what the current diagnostic criteria are.

Of course a correct diagnosis matters. Nobody has unlimited time and money for therapies; so OP needs to focus on what is actually needed, which is informed by the diagnosis. Also, kids with ASD are not "social and affectionate' in the same way NT kids are. Social deficits are core ASD deficits. You can't get an ASD diagnosis without serious impairment in that area. So, if OP is observing that her child has similar social skills as her twin, then that's pretty important evidence to consider.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think it probably doesn’t matter, as a practical matter, if she has ASD or not. So I would wait to reassess until she’s a little older. You may never get a definitive answer or unanimous agreement. But some of the things you mention as counter-evidence, like being social and affectionate, are common in children with ASD, so you also may have a skewed sense of what the current diagnostic criteria are.

Of course a correct diagnosis matters. Nobody has unlimited time and money for therapies; so OP needs to focus on what is actually needed, which is informed by the diagnosis. Also, kids with ASD are not "social and affectionate' in the same way NT kids are. Social deficits are core ASD deficits. You can't get an ASD diagnosis without serious impairment in that area. So, if OP is observing that her child has similar social skills as her twin, then that's pretty important evidence to consider.

I’m not sure it does. Therapies are determined by the child’s needS. I have a kid with ASD and he is socially motivated and cuddly (or was—he’s a teen now). Deficits in pragmatics aren’t the same thing as not being social or wanting to connect. I find that people unfamiliar with ASD often expect ASD kids to be asocial and cold, but that isn’t what I see in my son or his friends, and I think OP’s description of her dad reflects an inaccurate perception of ASD.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I think it probably doesn’t matter, as a practical matter, if she has ASD or not. So I would wait to reassess until she’s a little older. You may never get a definitive answer or unanimous agreement. But some of the things you mention as counter-evidence, like being social and affectionate, are common in children with ASD, so you also may have a skewed sense of what the current diagnostic criteria are.

Of course a correct diagnosis matters. Nobody has unlimited time and money for therapies; so OP needs to focus on what is actually needed, which is informed by the diagnosis. Also, kids with ASD are not "social and affectionate' in the same way NT kids are. Social deficits are core ASD deficits. You can't get an ASD diagnosis without serious impairment in that area. So, if OP is observing that her child has similar social skills as her twin, then that's pretty important evidence to consider.

I’m not sure it does. Therapies are determined by the child’s needS. I have a kid with ASD and he is socially motivated and cuddly (or was—he’s a teen now). Deficits in pragmatics aren’t the same thing as not being social or wanting to connect. I find that people unfamiliar with ASD often expect ASD kids to be asocial and cold, but that isn’t what I see in my son or his friends, and I think OP’s description of her dad reflects an inaccurate perception of ASD.

Oh her *dd*. I didn’t read it that she was saying her dad had the same level of social skills as the twin, only that she shows social motivation and makes some eye contact. Neither of these are inconsistent with ASD.