best place for second opinion on ASD diagnosis?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do we really need the what does ASD look like when it looks different for every child and its such a huge range given ASD encompasses everything from very mild concerns to someone who cannot speak or function without a caretaker.

There is nothing in the ASD criteria that is mild. It is only mild relative to the severe end of autism.

I know people don't want to believe this, but a quick look at severity levels spells this out.

And what is your experience with autistic kids?

I have a special needs child evaluated muliple times for autism. While he was never found to be autistic, his other issues have meant IEPs and some special education classes .

So you don't have any actual experience with autistic children. You just have a kid with something else and you can read the DSM, but somehow that tells something relevant about other people's children?

If ASD is so mild as to be undetectable by parents and the children are typically social and affectionate ... what's the issue needing treatment?

Depends on the kid. Some kids grow up, get jobs and have families without too much trouble. They might seem weird to a lot of people, but they make it. There are cases where a parent doesn't get diagnosed until their own kid is diagnosed, then the parent says, "Oh, that's why I always felt so different."

Other kids might just need help developing social skills. They want to make friends, but they need explicit instruction in how to interact with peers.

Many ASD kids also have ADHD or anxiety. The comorbidities might give them more trouble than the ASD, and so the ASD gets less attention or is completely missed.

A lot of ASD kids have trouble with executive function. They are very disorganized and forgetful. This is not a diagnostic criteria in the DSM, so you might not realize your quirky, socially awkward kid who forgets his homework every night may have ASD. They may just need to learn organization and planning skills. They may not be the life of the party, but they could have enough social skills to have a few friends to hang out with.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do we really need the what does ASD look like when it looks different for every child and its such a huge range given ASD encompasses everything from very mild concerns to someone who cannot speak or function without a caretaker.

There is nothing in the ASD criteria that is mild. It is only mild relative to the severe end of autism.

I know people don't want to believe this, but a quick look at severity levels spells this out.

And what is your experience with autistic kids?

I have a special needs child evaluated muliple times for autism. While he was never found to be autistic, his other issues have meant IEPs and some special education classes .

So you don't have any actual experience with autistic children. You just have a kid with something else and you can read the DSM, but somehow that tells something relevant about other people's children?

No. I am in special needs parents groups. I would say more than half my friend circle is moms whose chilfren have autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Do we really need the what does ASD look like when it looks different for every child and its such a huge range given ASD encompasses everything from very mild concerns to someone who cannot speak or function without a caretaker.

There is nothing in the ASD criteria that is mild. It is only mild relative to the severe end of autism.

I know people don't want to believe this, but a quick look at severity levels spells this out.

And what is your experience with autistic kids?

I have a special needs child evaluated muliple times for autism. While he was never found to be autistic, his other issues have meant IEPs and some special education classes .

So you don't have any actual experience with autistic children. You just have a kid with something else and you can read the DSM, but somehow that tells something relevant about other people's children?

No. I am in special needs parents groups. I would say more than half my friend circle is moms whose chilfren have autism.

Then you need to stick to your own observations, and not expound on issues where you lack the qualifications. Before you make sweeping generalizations about a condition that affects 3 million Americans in incredibly different ways, you need to learn an awful lot more. "A quick look at severity levels" in the DSM tells you absolutely nothing. If it did, you could just go buy a copy and diagnosis your own kid, save a fortune in visits to fancy doctors with their PhDs and years of experience.

"Mild cases" is relative to things that NT people do. There are autistic adults who have a family, friends and a good job and they did it without any special supports. Some of them don't even know they have autism. They usually know they are different from other people, but they are happy and successful as they are and nobody bothers them. We know these people exist because sometimes they get a diagnosis late in life. Maybe their kid has a problem and when they bring him to a psychologist, the parent gets diagnosed too. Maybe their spouse wonders why they live with such an alien person, so they go for couples therapy and get a diagnosis.

They get a diagnosis because they meet certain criteria. That's all you need. The diagnosing doctor doesn't shove supports on them because the DSM says they must need it. The doctor doesn't say, "you meet the criteria, but you don't need any supports so you must be NT, your obsession with trains and sensitivity to clothing tags notwithstanding."

[Anonymous]

The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

[Anonymous]

Anonymous wrote:The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

The issue isn't that kids with autism who live in certain states get therapies covered, it's that kids with very similar symptoms don't.

The reality is that diagnosing a child with developmental issues, especially this young, isn't an exact science. Diagnoses like ASD, ADHD, Social Communication Disorder, and Language Delay and continuous, and there's a lot of gray areas. Two highly skilled and qualified examiners can look at the same kid on different days and come up with different labels, and neither is wrong, they're just seeing slightly different views of the same picture and choosing slightly different words to describe it. Unless OP is very wealthy, a diagnosis is needed so that therapies will paid for, but the current ASD diagnosis will serve that purpose.

Putting a child through multiple rounds of testing, at this age, isn't helpful. What is helpful is watching how they grow, and what they respond to, and then increasing the time spent on things that they respond well to, whether that's inclusive preschool, or ABA, or speech therapy with Jane, or whatever. In OP's case, it seems that OP does know what's working for her daughter, and that ABA isn't working. If nothing was working, then more testing might make sense.

In a few years, diagnosis will be much easier, and the results are much more helpful in making educational plans. Revisiting the question then makes sense. It does sound like it's possible that down the road a diagnosis other than ASD, or even no diagnosis might make sense. Or it might be that new symptoms will emerge and an ASD diagnosis will continue to be the best fit. But even if OP had her daughter retested this year, she'd still need to do that testing too.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

The issue isn't that kids with autism who live in certain states get therapies covered, it's that kids with very similar symptoms don't.

The reality is that diagnosing a child with developmental issues, especially this young, isn't an exact science. Diagnoses like ASD, ADHD, Social Communication Disorder, and Language Delay and continuous, and there's a lot of gray areas. Two highly skilled and qualified examiners can look at the same kid on different days and come up with different labels, and neither is wrong, they're just seeing slightly different views of the same picture and choosing slightly different words to describe it. Unless OP is very wealthy, a diagnosis is needed so that therapies will paid for, but the current ASD diagnosis will serve that purpose.

Putting a child through multiple rounds of testing, at this age, isn't helpful. What is helpful is watching how they grow, and what they respond to, and then increasing the time spent on things that they respond well to, whether that's inclusive preschool, or ABA, or speech therapy with Jane, or whatever. In OP's case, it seems that OP does know what's working for her daughter, and that ABA isn't working. If nothing was working, then more testing might make sense.

In a few years, diagnosis will be much easier, and the results are much more helpful in making educational plans. Revisiting the question then makes sense. It does sound like it's possible that down the road a diagnosis other than ASD, or even no diagnosis might make sense. Or it might be that new symptoms will emerge and an ASD diagnosis will continue to be the best fit. But even if OP had her daughter retested this year, she'd still need to do that testing too.

I dunno. There is so much hype about ABA and early intervention for autism, that certain kinds of parents (raises hand!) would have difficulty not going all-out with therapies if a child got an autism diagnosis. Therapies are tested and evidenced-based for specific diagnoses, despite what people say about it here. I think OP is exactly right to be seeking out information that will help guide her efforts and not waste time/money/energy. Even if it's just finding a clinician who can help with a game plan for a child whose condition is unclear and may be for a while.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

The issue isn't that kids with autism who live in certain states get therapies covered, it's that kids with very similar symptoms don't.

The reality is that diagnosing a child with developmental issues, especially this young, isn't an exact science. Diagnoses like ASD, ADHD, Social Communication Disorder, and Language Delay and continuous, and there's a lot of gray areas. Two highly skilled and qualified examiners can look at the same kid on different days and come up with different labels, and neither is wrong, they're just seeing slightly different views of the same picture and choosing slightly different words to describe it. Unless OP is very wealthy, a diagnosis is needed so that therapies will paid for, but the current ASD diagnosis will serve that purpose.

Putting a child through multiple rounds of testing, at this age, isn't helpful. What is helpful is watching how they grow, and what they respond to, and then increasing the time spent on things that they respond well to, whether that's inclusive preschool, or ABA, or speech therapy with Jane, or whatever. In OP's case, it seems that OP does know what's working for her daughter, and that ABA isn't working. If nothing was working, then more testing might make sense.

In a few years, diagnosis will be much easier, and the results are much more helpful in making educational plans. Revisiting the question then makes sense. It does sound like it's possible that down the road a diagnosis other than ASD, or even no diagnosis might make sense. Or it might be that new symptoms will emerge and an ASD diagnosis will continue to be the best fit. But even if OP had her daughter retested this year, she'd still need to do that testing too.

I dunno. There is so much hype about ABA and early intervention for autism, that certain kinds of parents (raises hand!) would have difficulty not going all-out with therapies if a child got an autism diagnosis. Therapies are tested and evidenced-based for specific diagnoses, despite what people say about it here. I think OP is exactly right to be seeking out information that will help guide her efforts and not waste time/money/energy. Even if it's just finding a clinician who can help with a game plan for a child whose condition is unclear and may be for a while.

Early treatment is indicated for all children regardless of diagnosis. My.kid was born premature. Because so many conditions can show up early, the state paid for followup evaluations. My kid had motor delays, not particularly serious, nonetheless the state paid for PT to prevent or mitigate potential future problems. You shouldn't need a diagnosis that early, just a noticable delay.

ABA is a separate issue. It is evidence-based, but the original research was do on kids under old diagnostic categories(i.e. they would be considered very severe today) and for 40 hours a week by well-trained researchers. It's not practical to have a highly trained expert work with one kid full time for years. So now have fewer hours using less trained people on kids different from the original population. It doesn't seem to work as well in the real world. But the ABA providers seem to have captured the market at the expense of other approaches.

[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.

This describes my teen DS with ASD (Aspergers diagnosis).

Our search for the correct diagnosis also led us down many paths OP!

Delay in receptive and expressive speech. PDD-NOS age 20 months. Wouldn't make eye contact with dr., had a melt-down, and my favorite, DS would not "pretend play" and feed a baby doll!!! Not surprising to me, as DS has no siblings cousins.

Then, a few months later, no speech delays at all and pretend play--boys stuff--at preschool! None of our providers, incl. IE team, agreed with PDD-NOS. Then the sensory issues and OT. Then impulses. This led to getting an ADHD diagnosis, twice. No ASD with each of these pre-k looks. Then still more problems. Pragmatic speech. How to socialize. Exec. function. Strong singular interests. AS diagnosis grade 1.

That said, having been in an ASD school program for several years now, and observations at events, birthday parties, school presentations, I would agree that "Autism looks different in girls" EVEN AMONG THE GIRLS WE KNOW FROM CLASS and "...it's a spectrum."

Good luck OP!

[Anonymous]

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.

This describes my teen DS with ASD (Aspergers diagnosis).

Our search for the correct diagnosis also led us down many paths OP!

Delay in receptive and expressive speech. PDD-NOS age 20 months. Wouldn't make eye contact with dr., had a melt-down, and my favorite, DS would not "pretend play" and feed a baby doll!!! Not surprising to me, as DS has no siblings cousins.

Then, a few months later, no speech delays at all and pretend play--boys stuff--at preschool! None of our providers, incl. IE team, agreed with PDD-NOS. Then the sensory issues and OT. Then impulses. This led to getting an ADHD diagnosis, twice. No ASD with each of these pre-k looks. Then still more problems. Pragmatic speech. How to socialize. Exec. function. Strong singular interests. AS diagnosis grade 1.

That said, having been in an ASD school program for several years now, and observations at events, birthday parties, school presentations, I would agree that "Autism looks different in girls" EVEN AMONG THE GIRLS WE KNOW FROM CLASS and "...it's a spectrum."

Good luck OP!

not OP, but what were the signs and symptoms of your DS with ASD? Because this development sounds a lot like my 4.5 yo DS with socialization delays. He also has a strong singular interest. Everyone who has seen him has ruled out ASD, but given what people are saying here about social, affectionate kids having ASD, I keep wondering "Are they wrong? Are they missing something?"

He doesn't seem to have problems with joint attention. He is social with adults, just not with most children.

[Anonymous]

Anonymous wrote:Do we really need the what does ASD look like when it looks different for every child and its such a huge range given ASD encompasses everything from very mild concerns to someone who cannot speak or function without a caretaker.

There is nothing in the ASD criteria that is mild. It is only mild relative to the severe end of autism.

I know people don't want to believe this, but a quick look at severity levels spells this out.



If ASD is so mild as to be undetectable by parents and the children are typically social and affectionate ... what's the issue needing treatment?
Depends on the kid. Some kids grow up, get jobs and have families without too much trouble. They might seem weird to a lot of people, but they make it. There are cases where a parent doesn't get diagnosed until their own kid is diagnosed, then the parent says, "Oh, that's why I always felt so different."

Other kids might just need help developing social skills. They want to make friends, but they need explicit instruction in how to interact with peers.

Many ASD kids also have ADHD or anxiety. The comorbidities might give them more trouble than the ASD, and so the ASD gets less attention or is completely missed.

A lot of ASD kids have trouble with executive function. They are very disorganized and forgetful. This is not a diagnostic criteria in the DSM, so you might not realize your quirky, socially awkward kid who forgets his homework every night may have ASD. They may just need to learn organization and planning skills. They may not be the life of the party, but they could have enough social skills to have a few friends to hang out with.

Terrific post!

[Anonymous]

For those advising Children's Hospital - please be aware that the backlog is HUGE. DS got an ASD diagnosis at 3 and we're now at the point where we need a re-evaluation for 504 plan. I sent my documentation into Childrens in January. I'm still waiting for the call just to schedule. They said they'd probably give me a call around November.

[Anonymous]

Anonymous wrote:For those advising Children's Hospital - please be aware that the backlog is HUGE. DS got an ASD diagnosis at 3 and we're now at the point where we need a re-evaluation for 504 plan. I sent my documentation into Childrens in January. I'm still waiting for the call just to schedule. They said they'd probably give me a call around November.

The backlog is huge because people believe that ASD is somehow hidden and their neurotypical child needs to be evaluated despite having normal social skills.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The OP's post mentions one of the huge issues around an ASD diagnosis in this country -- money. There is an industry now that makes money off of an autism diagnosis, particularly in states where laws require coverage of speech therapy and ABA once an ASD diagnosis is made.

Just look at all the posters saying to keep the diagnosis for the free therapies!

The issue isn't that kids with autism who live in certain states get therapies covered, it's that kids with very similar symptoms don't.

The reality is that diagnosing a child with developmental issues, especially this young, isn't an exact science. Diagnoses like ASD, ADHD, Social Communication Disorder, and Language Delay and continuous, and there's a lot of gray areas. Two highly skilled and qualified examiners can look at the same kid on different days and come up with different labels, and neither is wrong, they're just seeing slightly different views of the same picture and choosing slightly different words to describe it. Unless OP is very wealthy, a diagnosis is needed so that therapies will paid for, but the current ASD diagnosis will serve that purpose.

Putting a child through multiple rounds of testing, at this age, isn't helpful. What is helpful is watching how they grow, and what they respond to, and then increasing the time spent on things that they respond well to, whether that's inclusive preschool, or ABA, or speech therapy with Jane, or whatever. In OP's case, it seems that OP does know what's working for her daughter, and that ABA isn't working. If nothing was working, then more testing might make sense.

In a few years, diagnosis will be much easier, and the results are much more helpful in making educational plans. Revisiting the question then makes sense. It does sound like it's possible that down the road a diagnosis other than ASD, or even no diagnosis might make sense. Or it might be that new symptoms will emerge and an ASD diagnosis will continue to be the best fit. But even if OP had her daughter retested this year, she'd still need to do that testing too.

I dunno. There is so much hype about ABA and early intervention for autism, that certain kinds of parents (raises hand!) would have difficulty not going all-out with therapies if a child got an autism diagnosis. Therapies are tested and evidenced-based for specific diagnoses, despite what people say about it here. I think OP is exactly right to be seeking out information that will help guide her efforts and not waste time/money/energy. Even if it's just finding a clinician who can help with a game plan for a child whose condition is unclear and may be for a while.

Early treatment is indicated for all children regardless of diagnosis. My.kid was born premature. Because so many conditions can show up early, the state paid for followup evaluations. My kid had motor delays, not particularly serious, nonetheless the state paid for PT to prevent or mitigate potential future problems. You shouldn't need a diagnosis that early, just a noticable delay.

ABA is a separate issue. It is evidence-based, but the original research was do on kids under old diagnostic categories(i.e. they would be considered very severe today) and for 40 hours a week by well-trained researchers. It's not practical to have a highly trained expert work with one kid full time for years. So now have fewer hours using less trained people on kids different from the original population. It doesn't seem to work as well in the real world. But the ABA providers seem to have captured the market at the expense of other approaches.

Maybe, but you don't just give kids all therapies at all levels of intensities. Your viewpoint ("EI at all costs" thing) is PRECISELY why in OP's position I would be very aggressive about getting a second opinion and working with a doctor who can quarterback the therapies in light of the child's ambiguous diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:For those advising Children's Hospital - please be aware that the backlog is HUGE. DS got an ASD diagnosis at 3 and we're now at the point where we need a re-evaluation for 504 plan. I sent my documentation into Childrens in January. I'm still waiting for the call just to schedule. They said they'd probably give me a call around November.

The backlog is huge because people believe that ASD is somehow hidden and their neurotypical child needs to be evaluated despite having normal social skills.

well, that isn't helped by some posts here and other places where people say your highly social, verbal, affectionate child may still have ASD because mine did, you just haven't gotten the proper testing yet!

[Anonymous]

Anonymous wrote:

Anonymous wrote:For those advising Children's Hospital - please be aware that the backlog is HUGE. DS got an ASD diagnosis at 3 and we're now at the point where we need a re-evaluation for 504 plan. I sent my documentation into Childrens in January. I'm still waiting for the call just to schedule. They said they'd probably give me a call around November.

The backlog is huge because people believe that ASD is somehow hidden and their neurotypical child needs to be evaluated despite having normal social skills.

No, the backlog is huge because Children's is one of the few places that takes insurance. If you are willing to pay.out of pocket, there are many private practices where you can get in much faster.