Anonymous
Post 09/14/2018 18:02     Subject: best place for second opinion on ASD diagnosis?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
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.



And yes, ASD looks nothing like what I thought before we had our kid.

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.

Fixed quotes:

Same with my kid. Very social and affectionate but poor pragmatic skills. Like OP, my kid was also a preemie. A followup assessment at 18 months found advanced cognitive and behavioral skills. Poor social pragmatic skills weren't apparent until about age 4.5.

And yes, ASD looks nothing like what I thought before we had our kid.


I'm sure you subjectively perceive your child as social and affectionate, but *differences* in social skills is a core aspect of ASD. That isn't to say that kids with ASD are feelingless automatons. They just have visible differences in how they interact socially. If OP is not seeing those differences, that's very important.
Anonymous
Post 09/14/2018 18:00     Subject: best place for second opinion on ASD diagnosis?
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.

Therapies are "informed by diagnosis" but not determined by it. My ASD kid goes to a lot therapies. Each therapist makes an independent evaluation of specific deficits, which sometimes are unrelated to her core ASD diagnosis. Then they make a treatment plan based on that evaluation, not just the diagnosis we showed up with.

So it's most important right now to know what the actual deficits are rather than pin down the diagnosis.


Well, OP clearly thinks a misdiagnosis is driving inappropriate therapies here. A professional has told her that her child needs ABA, which is tested on kids with ASD, and is generally specifically intended for that. It's costing her money, and she perceives it as "torturing" her child. OP is exactly right to seek a second opinion here, to know what kind of therapy she needs to focus on.
Anonymous
Post 09/14/2018 17:55     Subject: best place for second opinion on ASD diagnosis?
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.


If the ASD diagnosis led to the current set of therapies, and they've worked as well as OP describes, then there shouldn't a rush to reopen the question of diagnosis. If intervention wasn't working, that would be a totally different matter.

OP, you're going to want more testing to help you make decisions down the road. I'd wait until there's a decision that needs to be made (e.g. she no longer responds well to the current therapies and you need direction about what to try, or you're trying to make a decision about school placement) before going through the process of getting another opinion. The older she is when you do the testing the more accurate it will be, so I wouldn't rush.
Anonymous
Post 09/14/2018 17:51     Subject: best place for second opinion on ASD diagnosis?
OP, I have a child with a language disorder who got wrongly diagnosed at that age. It often done to get insurance benefits. With our insurance its easier with an ASD diagnosis than a language disorder so ASD has become a catchall. At that age it is hard to tell. I could tell the differences between mine and other kids who actually had ASD but we only had an hour office visit and that was it for the diagnosis (so its not really a valid evaluation).

I would do intensive speech therapy. U of MD LEAP is a great program if you can swing that at age 3. The director has changed so I don't know anything about the new director but it did wonders for my child.

We tried ABA at the insistence of one doctor. Since we didn't have any behavioral or other issues that we couldn't manage it was a waste of time. The provider was very sweet but she did very basic speech therapy which wasn't helpful instead of true ABA. It was basically all play and I gave it up for more speech. No reason not to try it. We didn't have a negative experience but it wasn't as helpful as targeted speech therapy. It really depends on the provider.

I'd wait a year and see at this point. Its impossible to tease things out until 4-5-6, when the speech comes in (assuming it does) and the receptive gets better.

The real second opinion you want is from either Dr. Camarata at Vanderbilt or his wife Mary Camarata. They are the "experts" at teasing it out. We saw Dr. Camarata and he was great in person and really good at testing but he had someone else write the report and it was only raw test scores and not useful. He's so busy it was impossible to do any follow up but to answer the language vs. ASD, he/they are the go-to people.

I cannot say if all the speech therapy helped or it was just time and it had to happen in its own time but I have no regrets doing intensive therapies early on. My kid is doing really well and just very minor lingering speech issues so its not all gloom and doom for some of these kids like some make it out to be. It will tease itself out.

Anonymous
Post 09/14/2018 17:37     Subject: Re:best place for second opinion on ASD diagnosis?
OP, we are in a similar situation. My DS was diagnosed with ASD at children’s 1 month before he turned 2. He was non-verbal at the time, and was only crawling. The doctor diagnosed him after 20 min of watching him interact. There were no tests. Our insurance did not cover ABA either, so while the doctor was telling us this diagnosis would be helpful, it wasn’t really.

We did end up doing ABA, due to his not talking and some other things. They focused mainly on language acquisition (different from speech), as well as relating to the world around him. There was no table time, no clickers, no using food as a reward, none of the awful things you hear about ABA. I noticed a month in that DS really was starting to relate differently to people and his surroundings. We did it for about 6 Mo; then switched to a county preschool that offers speech, OT, and PT. We also do private PT and speech. The school day activities basically are what his ABA therapist was doing with him. Almost all of his therapists have commented on the fact that he doesn’t really seem to fit the mold of ASD. He wasn’t even classified as autistic on his IEP; they used developmental delay instead.

All of this is to say-we went ahead with as many therapies as we could throw at him on the assumption that the more interventions he got, the better off he would be, WHATEVER his issues are. If the ABA people you interviewed don’t sound good, find another practice (or skip it all together if you don’t want to bother). Don’t let your worry over a possible misdiagnosis stop you from getting the therapies your DD needs to help her. If you found another doc to say no, she doesn’t have ASD, would you stop all therapies? If so, that’s something you should examine in yourself.

Good luck.
Anonymous
Post 09/14/2018 16:51     Subject: Re:best place for second opinion on ASD diagnosis?
Anonymous wrote:
Anonymous wrote:OP again-- I have never understood why people say you get "better insurance coverage" from an ASD diagnosis. I can't be the only person whose insurance has an exclusion for all autism treatment (my employer self-insures, so is exempt from state mandates for autism coverage, as are many large employers). NOTHING ASD-related is covered by my insurance, except 10 speech therapy visits a year (20 for OT/PT combined), and an ASD diagnosis doesn't change that. The only coverage I get from the diagnosis is ABA through early intervention until she turns 3.

However, ABA is ridiculous for a misdiagnosed child-- they are trying to teach my child goals like "sit still with hands clasped" or "verbally request an item she can't see", when *she already learned to do those things on her own*. Even the ABA therapists seem to see how ridiculous it is-- they kept saying things like, "Well, this will be easy!" during her initial evaluation. And when I said I was questioning the diagnosis and whether she really needs ABA, they tried to tell me, "ABA isn't just for autism. Any child can benefit from ABA." Which just sounds like a ridiculous money grab. I'd rather not unnecessarily torture my child, if what she really needs is just some speech therapy and time to grow. So yes, the diagnosis matters.

The previous testing was done at a world-famous hospital's autism center, so going to "the best children's hospital" in my area has already been done. For whoever asked, it has been less than 4 months since we were given the ASD diagnosis (so about 5 months from when she was tested).

ABA is actually very controversial. Often it is automatically recommended for ASD kids. The research literature shows that it works well, but the actual experiences of parents and grown-up ASD kids who went through it suggest it doesn't work and could be harmful.

My opinion is that ABA is most helpful when your kid needs to learn basic skills that he or she is unable through language or social learning the most kids do it. Usually it's the lower functioning kids, regardless of diagnosis.


We did none of that even for our low functioning kid. Regardless of what some ‘professional’ recommends (most likely because they were taught that in school and became a good little robot upon graduation) you should do what you think is in your kids’ best interest.
Anonymous
Post 09/14/2018 16:46     Subject: Re:best place for second opinion on ASD diagnosis?
Anonymous wrote:Just regularly take her to a developmental pediatrician. If that doctor recommends someone go with that.


Why would a psychologist be diagnosing anything anyway? Take her regularly to a good doctor.
Anonymous
Post 09/14/2018 16:45     Subject: Re:best place for second opinion on ASD diagnosis?
Just regularly take her to a developmental pediatrician. If that doctor recommends someone go with that.
Anonymous
Post 09/14/2018 16:23     Subject: best place for second opinion on ASD diagnosis?
Anonymous wrote:
Anonymous wrote:
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.



And yes, ASD looks nothing like what I thought before we had our kid.

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.

Fixed quotes:

Same with my kid. Very social and affectionate but poor pragmatic skills. Like OP, my kid was also a preemie. A followup assessment at 18 months found advanced cognitive and behavioral skills. Poor social pragmatic skills weren't apparent until about age 4.5.

And yes, ASD looks nothing like what I thought before we had our kid.
Anonymous
Post 09/14/2018 16:03     Subject: best place for second opinion on ASD diagnosis?
Anonymous wrote:
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.


Same with my kid. Very social and affectionate but poor pragmatic skills. Like OP, my kid was also a preemie. A followup assessment at 18 months found advanced cognitive and behavioral skills. Poor social pragmatic skills weren't apparent until about age 4.5.

And yes, ASD looks nothing like what I thought before we had our kid.

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.
Anonymous
Post 09/14/2018 15:56     Subject: best place for second opinion on ASD diagnosis?
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.

Therapies are "informed by diagnosis" but not determined by it. My ASD kid goes to a lot therapies. Each therapist makes an independent evaluation of specific deficits, which sometimes are unrelated to her core ASD diagnosis. Then they make a treatment plan based on that evaluation, not just the diagnosis we showed up with.

So it's most important right now to know what the actual deficits are rather than pin down the diagnosis.
Anonymous
Post 09/14/2018 15:14     Subject: best place for second opinion on ASD diagnosis?
Just drop ABA then! You don’t have to do it. Do what makes sense to you and don’t do what seems like a waste of time.
Anonymous
Post 09/14/2018 15:08     Subject: Re:best place for second opinion on ASD diagnosis?
Anonymous wrote:OP again-- I have never understood why people say you get "better insurance coverage" from an ASD diagnosis. I can't be the only person whose insurance has an exclusion for all autism treatment (my employer self-insures, so is exempt from state mandates for autism coverage, as are many large employers). NOTHING ASD-related is covered by my insurance, except 10 speech therapy visits a year (20 for OT/PT combined), and an ASD diagnosis doesn't change that. The only coverage I get from the diagnosis is ABA through early intervention until she turns 3.

However, ABA is ridiculous for a misdiagnosed child-- they are trying to teach my child goals like "sit still with hands clasped" or "verbally request an item she can't see", when *she already learned to do those things on her own*. Even the ABA therapists seem to see how ridiculous it is-- they kept saying things like, "Well, this will be easy!" during her initial evaluation. And when I said I was questioning the diagnosis and whether she really needs ABA, they tried to tell me, "ABA isn't just for autism. Any child can benefit from ABA." Which just sounds like a ridiculous money grab. I'd rather not unnecessarily torture my child, if what she really needs is just some speech therapy and time to grow. So yes, the diagnosis matters.

The previous testing was done at a world-famous hospital's autism center, so going to "the best children's hospital" in my area has already been done. For whoever asked, it has been less than 4 months since we were given the ASD diagnosis (so about 5 months from when she was tested).

ABA is actually very controversial. Often it is automatically recommended for ASD kids. The research literature shows that it works well, but the actual experiences of parents and grown-up ASD kids who went through it suggest it doesn't work and could be harmful.

My opinion is that ABA is most helpful when your kid needs to learn basic skills that he or she is unable through language or social learning the most kids do it. Usually it's the lower functioning kids, regardless of diagnosis.
Anonymous
Post 09/14/2018 14:49     Subject: Re:best place for second opinion on ASD diagnosis?
OP again-- I have never understood why people say you get "better insurance coverage" from an ASD diagnosis. I can't be the only person whose insurance has an exclusion for all autism treatment (my employer self-insures, so is exempt from state mandates for autism coverage, as are many large employers). NOTHING ASD-related is covered by my insurance, except 10 speech therapy visits a year (20 for OT/PT combined), and an ASD diagnosis doesn't change that. The only coverage I get from the diagnosis is ABA through early intervention until she turns 3.

However, ABA is ridiculous for a misdiagnosed child-- they are trying to teach my child goals like "sit still with hands clasped" or "verbally request an item she can't see", when *she already learned to do those things on her own*. Even the ABA therapists seem to see how ridiculous it is-- they kept saying things like, "Well, this will be easy!" during her initial evaluation. And when I said I was questioning the diagnosis and whether she really needs ABA, they tried to tell me, "ABA isn't just for autism. Any child can benefit from ABA." Which just sounds like a ridiculous money grab. I'd rather not unnecessarily torture my child, if what she really needs is just some speech therapy and time to grow. So yes, the diagnosis matters.

The previous testing was done at a world-famous hospital's autism center, so going to "the best children's hospital" in my area has already been done. For whoever asked, it has been less than 4 months since we were given the ASD diagnosis (so about 5 months from when she was tested).
Anonymous
Post 09/14/2018 14:48     Subject: best place for second opinion on ASD diagnosis?
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.


I agree that a child's needs should drive the therapies chosen. I also think that a child's personality should also be taken into account. When my DH and I saw ABA in action, we didn't think it was appropriate for our DC with ASD, so we didn't pursue it. Instead, we sent our DC who loved school and did better with structure to a full-day, fully-structured, developmentally appropriate, year-round preschool program that integrated DC's IEP services into the school. We added private speech and OT as it was needed and to address specific needs. We feel like generally, we did a good job because DC's current elementary school placement is way above where the public school system thought DC would be a few months after DC got an IEP (post-IFSP). DC is also doing much better than the developmental pediatrician from KKI who diagnosed DC with ASD told us DC would do.

In summary, if you feel that the therapies your child is getting aren't helpful, stop doing them. You won't be a bad parent for stopping therapies that "everyone" thinks work for ASD kids. You know your DD best, so if you think she needs a break, no therapy, less therapy, different therapy, other therapists, etc., or you just need a break from all those therapies, then take the break.

But that diagnosis is insurance gold. Hold onto it even if you think it's bogus.