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Anonymous wrote:

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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.

I am not the poster who said I would give my kid all therapies at all levels. I am the one who said look for areas of deficit and apply therapies there. Which is exactly what happened with my kid and solely because my kid was at high risk for delays due to being a premie. Which is the same as OP's situation.

If your kid is not a premie, but you notice a delay, gwt an evaluation, and if necessary.provide therapies. Be less concerned about diagnosis, which can change and apply APPROPRIATE therapies. If the therapy is not helping, stop it.

And yes, a good quarterback can certaintly help guide you.

Yeah, but how do you "look for deficits"? In great part, based on the results of diagnostics. If a child is diagnosed with ASD, by definition they have deficits in social skills. That's why you should always see a correct diagnosis; or if it's fuzzy or unstable, work with a professional who is willing to admit that.

There are milestones for social, behavioral, cognitive and physical development. If your child performs well below average for her developmental age, then an intervention may be warranted. There may or may not be a diagnosis associated with it. It may simply be a delay and the child can use some assistance to catch up. For a premie, subtract weeks early from actual age to get developmental age.

OP, I am one of the PPs who said an affectionate child could still have autism, but from your description, it doesn't sound like your child has it.

It sounds like Fancy Hospital gave you an inexperienced tester who totally blew it. ADOS is not a stand alone test. It has to be combined with information from parents and other professionals who have seen the child. You could go back to them and ask for a retest with a more experienced person.

I'd forget about ABA completely. It doesn't work for the problems you are describing. Doesn't matter if Early Intervention covers it, it's a waste of time.

Is there a development pediatrician in your area? That would be a good person for a second opinion without having to travel. They'd also be able to track your kid's motor issues or anything else that may come up.

^So I see OP's DD did have ADOS and it wasn't just the inexperienced developmental pediatrician who diagnosed ASD as stated on the first post.

Go see the Camarata's if you wish... it's a journey.

Anonymous wrote:

Anonymous wrote:

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.

I am not the poster who said I would give my kid all therapies at all levels. I am the one who said look for areas of deficit and apply therapies there. Which is exactly what happened with my kid and solely because my kid was at high risk for delays due to being a premie. Which is the same as OP's situation.

If your kid is not a premie, but you notice a delay, gwt an evaluation, and if necessary.provide therapies. Be less concerned about diagnosis, which can change and apply APPROPRIATE therapies. If the therapy is not helping, stop it.

And yes, a good quarterback can certaintly help guide you.

Yeah, but how do you "look for deficits"? In great part, based on the results of diagnostics. If a child is diagnosed with ASD, by definition they have deficits in social skills. That's why you should always see a correct diagnosis; or if it's fuzzy or unstable, work with a professional who is willing to admit that.

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?

My DS has Asperger's and we did not suspect anything until DS started prek4 - the first time he was in a group setting with other children. DS is very verbal - talked early, affectionate and social with family members, adults and older children. He met all milestones on time and is very mild mannered and easy going - no behavioral issues and so easy going that he worked as a model in NYC as a baby and toddler. He followed directions well and rarely got upset or cried. Ate well, slept well and was basically a really easy baby.

So when DS started preK and the prek teacher suggested that there was something "off", we did not believe it until I did an observation at school and saw how he interacted with other kids - he didn't. The school did a psychoeducational eval which diagnosed ASD. We took him to a developmental pediatrician who also diagnosed ASD/Asperger's and since all this was still hard to believe DS had ADOS/ADI-R at Children's which confirmed ASD. Granted, DS made it on the spectrum by 1 point on the ADOS: DS is "very socially motivated" and has great joint attention but 1. he is terrible at reading nonverbal social cues 2. has obsessive interests and 3. repetitive movements mostly running around in circles which at 4 yrs old can seem normal but coupled with 1 and 2 put DS on the spectrum.

DS is 11 now and we also added ADHD, combined type, when DS was 7 through a neuropsych eval. Everything, ASD & ADHD, was all reconfirmed by another neuropsych at 10.

DS has had an IEP since preK. He does not need academic supports and has always tested above grade level, however, he needs lots of social communications supports at school otherwise, I know he will be pretty miserable. My DH and I don't want that for him. Right now, DS loves middle school which is pretty remarkable considering it is MS. We sent him to a SN school for kids with Asperger's for middle school. Private pay, 40K+, because we think the social communication piece is that important even though everyone acknowledged that DS will have done fine academically at his regular public middle school.

I am the pp who suggested that OP go get an ADOS if she wants a second opinion. Since you have already seen a dev ped, the ADOS is probably your best bet. Of course, you can wait and just go along with private therapies without a diagnosis but knowing what the issue is will help with what therapies are needed.

For DS with Asperger's/ASD - ABA was never recommended except for very specifically in 2nd grade when he needed a FBA/BIP - yup, a functional behavioral analysis and a behavioral intervention plan are done using ABA techniques.

Anonymous wrote:

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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.

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.

Adults find it adorable when a little kid uses big words and talks about topics advanced for their age. Other kids have a hard time with or aren't interested in that sort of thing, so they'll ignore the child. As children get older, adults are less bemused at meeting a precocious child and it becomes clearer that the child's social skills aren't there. It also becomes apparent as the child becomes more interested in peer relationships. My DS followed this trajectory and was diagnosed at almost 9yo with ASD after it had been dismissed by several professionals previously. I don't say "ruled out", because earlier professionals did not use a test like the ADOS/ADI-R. Between his advanced expressive language and ability to make eye contact, they dismissed further testing. He's always had problems with rigidity, sensitivity, and poor flexible thinking though and the ASD diagnosis has only gotten clearer as he gets older. As he's approaching middle school, "quirky" would be a kind description.

I think it would be worth getting an ADOS/ADI-R in the Kindergarten time frame if you still have doubts about the accuracy of your DC's diagnosis.

Op, I tried to read through this thread but my eyeballs are hurting. I just wanted to say, I have a daughter who is nearly four. I'm surprised that they formally diagnosed your daughter so young. When my daughter was her age she had raised some red flags on screenings for autism, and she was receiving Services through our state's program, for speech and language, but now as she approaches age four it's very obvious she's not on the spectrum of autism, although she still does have other delays that we're trying to find out what they are.

I think, based on what you said, if I was you I would probably challenge the diagnosis. Has your daughter ever had an EEG? With my daughter this is where we're at right now she has some seizure activity that may be causing some delays, and we're currently going through testing related to that. I only bring that up because she sounds a lot like your girl.

While there is still a lot that is unknown about your DD's situation, it seems pretty clear that you don't need to pursue ABA if you don't see the need.

I'm sorry you're going through all this!

Op again-- wow, this thread got out of control! A few things:

For people suggesting ADOS: yes, that's how she was diagnosed the first time. And if you think the ADOS is never wrong, I am not going to change your mind on an anonymous website. I may try to get an appointment with the Camaratas, as I think I have exhausted local options. Thanks for all suggestions.

She is as social as her twin sister, if not more so. When I pointed this out to the psychologist who diagnosed her, she said, "Well, your other twin might be autistic, too. You should have her tested also." I refused to have Other Twin tested, as no one from early intervention, the NICU follow-up clinic, speech therapy, daycare, etc., is raising any autism concerns about Other Twin. The NICU follow-up team actually told me, "You probably won't have any more problems with her." Literally the only people who think she needs autism testing are the people who make money from it.

Her improvement is NOT due to ABA. She did a center-based ABA program for a grand total of 7 days before we had to pull her out because the ABA people can't feed her. She has been in feeding therapy for a year, and her feeding issues are caused by a motor delay, NOT a behavioral problem (according to the OT and psychologist on the feeding team at Fancy World-Renowned Hospital). The ABA people insisted on treating her feeding issues as a behavior problem, and basically used ABA techniques to try to force-feed her (even though they had instructions from the feeding therapy team to NOT do this).

So now, I am calling other ABA providers to see if we can get in-home ABA started. My conversation with one of them today went like this:

BCBA: So, what behavior problems does your child have that require ABA?

Me: Well, she doesn't really have behavior problems. But she has a diagnosis of severe autism from the autism center at Fancy World-Renowned Hospital, and they say she needs 30 hours a week of ABA therapy, and early intervention is paying for it.

BCBA: So what behavior problems was the other ABA center treating her for?

Me: Well, they had goals like getting her to say "I want milk", instead of just "milk". But I'm not sure if that's really an autistic behavior problem, since my other twin just says "milk", and lots of 2-year-olds just say "milk".

BCBA: Anything else?

Me: She... doesn't have great eye contact with people she doesn't know? But it's fine with people she knows, like me, or her regular speech therapist.

BCBA: So, our ABA program generally treats kids who have severe behavior problems, like hitting and kicking people, or spitting at people, or throwing chairs.

Me: She doesn't do any of that. She's very sweet. She comforts her twin sister and says, "It's okay!" when her sister is upset.

BCBA: It doesn't sound like your child needs ABA, because she doesn't have behavior problems.

Me: But Fancy World-Renowned Hospital told me she needs 30 hours a week of ABA, or she's going to regress and become non-verbal and cognitively impaired.

BCBA: Well, I guess we can go ahead and schedule an evaluation.

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.



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!

Lousy post as this has nothing to do with OP.