best place for second opinion on ASD diagnosis?

[Anonymous]

Anonymous wrote:We went for a third opinion when DS was diagnosed with ASD when he was 4. His school had a psych ed eval which diagnosed ASD/Asperger's and then we took to a well known developmental pediatrician who also diagnosed ASD.

For the third opinion, we took DS to Children's for ADOS/ADI-R which also diagnosed ASD. DS is highly socially motivated without language delays and attended a dual language school from prek-5.

He is 11 now the diagnosis is correct plus add in, ADHD combined type. In RL, most people never think DS has any diagnosis, he presents as NT.

Get the ADOS/ADI-R if you want a second (or third) opinion.

Its very difficult to test kids who do not have speech. Kids can change greatly after the language comes in. ASD/ADHD diagnosis are very different than ASD/language diagnosis. Most schools are not well trained to do evaluations and most school psychologists are very basic at best and don't put a lot of effort in it.

[Anonymous]

We did aba for our non asd child for behavior reasons which were not evident until about 4. Our child has multiple deficits and issues and has never been thought to have asd fwiw.

[Anonymous]

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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.

The question of whether ABA is appropriate for the child is separate from the question of whether her child is ASD. Many people believe that the kind of ABA OP is describing is inappropriate for any child. OP can simply stop the ABA.

I think its worth trying ABA if insurance is paying. We did and stopped it. It wasn't as everyone describes it on here and online. It really varies by provider. BUT, I also didn't find it helpful in getting speech or language skills which is why we didn't continue. ABA is good for behavioral and other issues. It would be better for a low functioning child or one with behavioral issues.

ABA is also a big time commitment so why should OP waste her time when it's not helping?

ABA time varies depending on the provider and child. We did it 4 hours a week - 2 - 2 hour sessions. Its not a bad idea to try it as it may help. We did it for a few months and moved on to more speech. There was no harm, child liked the provider.

Thing is, most of the research was based on 40 hours per week, and the usual recommended minimum is 10 to 20 hours. So while it's good there was no harm, 4 hours per week was almost certainly not enough. You would have been better off with 4 hours of speech per week.

[Anonymous]

Anonymous wrote:

Anonymous wrote:We went for a third opinion when DS was diagnosed with ASD when he was 4. His school had a psych ed eval which diagnosed ASD/Asperger's and then we took to a well known developmental pediatrician who also diagnosed ASD.

For the third opinion, we took DS to Children's for ADOS/ADI-R which also diagnosed ASD. DS is highly socially motivated without language delays and attended a dual language school from prek-5.

He is 11 now the diagnosis is correct plus add in, ADHD combined type. In RL, most people never think DS has any diagnosis, he presents as NT.

Get the ADOS/ADI-R if you want a second (or third) opinion.

Its very difficult to test kids who do not have speech. Kids can change greatly after the language comes in. ASD/ADHD diagnosis are very different than ASD/language diagnosis. Most schools are not well trained to do evaluations and most school psychologists are very basic at best and put a lot of effort in it.

DS had ADOS/ADI-R testing at Children's and the testing was conducted by a SLP and neuropsychologist. It was fully covered by insurance.

The ADOS testing is tailored to age and takes into account that the child is a premmie and language ability (the reason the testing is conducted by the SLP as part of the team. Administering the ADOS requires additional training beyond being a neuropsych, SLP, etc: The main ones that administers ADOS/ADI-R in our area are Children's, KKI, and Dr. David Black's practice. I don't know any public schools that administer ADOS.

Since OP is looking for a second opinion to her DD's ASD diagnosis and has already seen a dev ped, ADOS/ADI-R is the way to go.

[Anonymous]

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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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

[Anonymous]

Anonymous wrote:

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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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

All ASD kids have social deficits, but the nature of the deficits covers a very broad range. Some are social. Some are loners. Some are affectionate. Some are not. So you can't say "My kid is 'social and affectionate' therefore he can't have ASD." It simply doesn't work that way. You have to compare ALL of a kid's social behaviors to a group of peers and look for abnormalities across the entire range of possible interactions.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

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.

The question of whether ABA is appropriate for the child is separate from the question of whether her child is ASD. Many people believe that the kind of ABA OP is describing is inappropriate for any child. OP can simply stop the ABA.

I think its worth trying ABA if insurance is paying. We did and stopped it. It wasn't as everyone describes it on here and online. It really varies by provider. BUT, I also didn't find it helpful in getting speech or language skills which is why we didn't continue. ABA is good for behavioral and other issues. It would be better for a low functioning child or one with behavioral issues.

ABA is also a big time commitment so why should OP waste her time when it's not helping?

ABA time varies depending on the provider and child. We did it 4 hours a week - 2 - 2 hour sessions. Its not a bad idea to try it as it may help. We did it for a few months and moved on to more speech. There was no harm, child liked the provider.

Thing is, most of the research was based on 40 hours per week, and the usual recommended minimum is 10 to 20 hours. So while it's good there was no harm, 4 hours per week was almost certainly not enough. You would have been better off with 4 hours of speech per week.

Our insurance approved a lot, I forget how much but no provider would give that much, nor did we want or need it. We did 4-5 day a week speech.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:

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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

All ASD kids have social deficits, but the nature of the deficits covers a very broad range. Some are social. Some are loners. Some are affectionate. Some are not. So you can't say "My kid is 'social and affectionate' therefore he can't have ASD." It simply doesn't work that way. You have to compare ALL of a kid's social behaviors to a group of peers and look for abnormalities across the entire range of possible interactions.

Not relevant at all.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:We went for a third opinion when DS was diagnosed with ASD when he was 4. His school had a psych ed eval which diagnosed ASD/Asperger's and then we took to a well known developmental pediatrician who also diagnosed ASD.

For the third opinion, we took DS to Children's for ADOS/ADI-R which also diagnosed ASD. DS is highly socially motivated without language delays and attended a dual language school from prek-5.

He is 11 now the diagnosis is correct plus add in, ADHD combined type. In RL, most people never think DS has any diagnosis, he presents as NT.

Get the ADOS/ADI-R if you want a second (or third) opinion.

Its very difficult to test kids who do not have speech. Kids can change greatly after the language comes in. ASD/ADHD diagnosis are very different than ASD/language diagnosis. Most schools are not well trained to do evaluations and most school psychologists are very basic at best and put a lot of effort in it.

DS had ADOS/ADI-R testing at Children's and the testing was conducted by a SLP and neuropsychologist. It was fully covered by insurance.

The ADOS testing is tailored to age and takes into account that the child is a premmie and language ability (the reason the testing is conducted by the SLP as part of the team. Administering the ADOS requires additional training beyond being a neuropsych, SLP, etc: The main ones that administers ADOS/ADI-R in our area are Children's, KKI, and Dr. David Black's practice. I don't know any public schools that administer ADOS.

Since OP is looking for a second opinion to her DD's ASD diagnosis and has already seen a dev ped, ADOS/ADI-R is the way to go.

The ADOS is not always accurate in young kids with receptive language issues. Its pretty common for them to also have limited eye contact and limited social skills as there is no need with poor communication. The difference becomes later when the receptive and expressive comes and all those other things resolve itself. For kids with ASD vs. ADHD or other disorders it helps, but its not the best indicator for language. Not all SLPs are good, most are pretty bad from our experience.

[Anonymous]

Anonymous wrote:

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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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

All ASD kids have social deficits, but the nature of the deficits covers a very broad range. Some are social. Some are loners. Some are affectionate. Some are not. So you can't say "My kid is 'social and affectionate' therefore he can't have ASD." It simply doesn't work that way. You have to compare ALL of a kid's social behaviors to a group of peers and look for abnormalities across the entire range of possible interactions.

Not relevant at all.

Could you be a little more specific?

[Anonymous]

Anonymous wrote: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!

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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!

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.

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.

[Anonymous]

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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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

All ASD kids have social deficits, but the nature of the deficits covers a very broad range. Some are social. Some are loners. Some are affectionate. Some are not. So you can't say "My kid is 'social and affectionate' therefore he can't have ASD." It simply doesn't work that way. You have to compare ALL of a kid's social behaviors to a group of peers and look for abnormalities across the entire range of possible interactions.

Not relevant at all.

Could you be a little more specific?

This is not relevant to this topic of conversation.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

All ASD kids have social deficits, but the nature of the deficits covers a very broad range. Some are social. Some are loners. Some are affectionate. Some are not. So you can't say "My kid is 'social and affectionate' therefore he can't have ASD." It simply doesn't work that way. You have to compare ALL of a kid's social behaviors to a group of peers and look for abnormalities across the entire range of possible interactions.

Not relevant at all.

Could you be a little more specific?

This is not relevant to this topic of conversation.

For OP, the fact that her child is "sweet and affectionate" is not a reliable indicator for ASD. One PP encouraged that sort of thinking and several others responded to correct the information.

OP's bigger concern is that one inexperienced tester got results inconsistent with tests and observations of other professionals.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

Yes, there are differences in social skills. But the issue of not being "social and affectionate" is just a false stereotype and a red herring that you are perpetrating. Stop it.

Kids with ASD just don't socialize and respond to others the same way NT kids do. This is a basic fact. It's not false - it's the defining feature of autism!

You did not understand my post!

+1 the PP seems to either not get or to willfully misunderstand the point several of us are making.

I actually don't understand the point you're making. what is it?

All ASD kids have social deficits, but the nature of the deficits covers a very broad range. Some are social. Some are loners. Some are affectionate. Some are not. So you can't say "My kid is 'social and affectionate' therefore he can't have ASD." It simply doesn't work that way. You have to compare ALL of a kid's social behaviors to a group of peers and look for abnormalities across the entire range of possible interactions.

Not relevant at all.

Could you be a little more specific?

This is not relevant to this topic of conversation.

For OP, the fact that her child is "sweet and affectionate" is not a reliable indicator for ASD. One PP encouraged that sort of thinking and several others responded to correct the information.

OP's bigger concern is that one inexperienced tester got results inconsistent with tests and observations of other professionals.

No - parents' understanding of their child's social function matters. If OP perceived her child as responding socially similarly to her twin or other kids, that's important information. ASD is not hidden - the kids have obvious differences.