FYI: American Academy of Pediatrics Report Provides Sweeping Review of Evidence Concerning Autism Spectrum Disorder

[Arcadia]

https://www.aap.org/en-us/about-the-aap/aap-press-room/Pages/American-Academy-of-Pediatrics-Report-Provides-Sweeping-Review-of-Evidence-Concerning-Autism-Spectrum-Disorder.aspx
“The American Academy of Pediatrics (AAP) has updated its clinical recommendations on autism spectrum disorder for the first time in 12 years, analyzing the latest research on the neurodevelopmental disorder that affects an estimated 1 in every 59 children.

“Identification, Evaluation, and Management of Children with Autism Spectrum Disorder,” a clinical report published in the January 2020 Pediatrics, emphasizes the importance of early identification of autism, which can be diagnosed as young as 18 months of age. The report, along with an executive summary (both published online Dec. 16), reflects significant changes in the field since the previous recommendations were published in 2007.

In that time, research examining the possible causes of autism spectrum disorder has progressed rapidly, with increasing understanding of the interplay between genetic make-up and environment. 

Physicians now have a greater understanding of the medical and behavioral conditions that often co-occur with autism, and the body of research supporting evidence-based interventions has grown substantially. The updated clinical report reflects this new evidence and offers recommendations to physicians in identifying and managing the disorder, and in treating common co-occurring conditions.

Because early identification is so important, the AAP continues to recommend developmental and behavioral surveillance of children at every well child visit, developmental screening at 9-, 18-, and 30-month visits, as well as specific screening for autism spectrum disorder at ages 18 and 24 months.

“We know that the earlier we can start therapies for children who show signs of developmental delays, the better likelihood of positive outcomes,” said Susan L. Hyman, MD, FAAP. lead author of the report, which was authored by the AAP Council on Children with Disabilities and the AAP Section on Developmental and Behavioral Pediatrics.

“There is no reason to wait for a diagnosis of autism before starting some services, such as speech or behavioral therapies,” said Dr. Hyman, a developmental and behavioral pediatrician at the University of Rochester and Golisano Children’s Hospital. “Interventions work best when they are early, when they are intense, and when they involve the family.”

More than 5 million Americans are affected by autism spectrum disorder, and its prevalence has increased to 1 in 59 children, an increase from 1 in 155 in 2007.The disorder is characterized by deficits in social communication and interaction and restrictive repetitive patterns of behavior.

Many individuals with autism have co-occurring conditions that can and should be treated, according to the AAP. This includes intellectual disability, language disorders, attention-deficit/hyperactivity disorder and anxiety, and disorders of sleep, feeding, gastrointestinal symptoms and seizures. The AAP report states that 40% of individuals with autism spectrum disorder have an intellectual disability. As many as 40% to 60% of school-aged children and adults with autism are reported to have anxiety disorders.

The AAP supports the use of behavioral interventions for skill building, based on the most recent research, and noted the combinations of therapies and approaches that include parents that are increasingly used in community settings.

“Families play a key role in treatment and advocacy for a child with autism spectrum disorder,” said Susan E. Levy, MD, MPH, FAAP, a co-author of the report, developmental and behavioral pediatrician at Children's Hospital of Philadelphia and a professor of pediatrics at the Perelman School of Medicine at the University of Pennsylvania.

“They also need the support of the professional team, the clinicians, educators and therapists who are working alongside them.”

The AAP recommends that pediatricians:

• Conduct developmental and behavioral surveillance during all well visits with children, developmental screening at the 9-, 18-, and 30-month visits, and standardized screening of patients for autism spectrum disorder at 18 and 24 months old.

• Help ensure that children with autism spectrum disorder are provided with evidence-based services to address social, academic and behavioral needs at home and school, with access to appropriate pediatric and mental health care, respite services and leisure activities.

• Engage with families and youth to plan a transition to the adult system of medical and behavioral care.

• Inform patients and families about the evidence for interventions, refer families for possible participation in clinical research and refer families to support organizations.

While research has led to more knowledge about autism spectrum disorder, the AAP acknowledges that much work remains to be done.

“There need to be more equitable and affordable therapies for all families, from the time of diagnosis through employment and adult life,” Dr. Hyman said. “All children deserve options and hope for productive, satisfying lives.””

[PeterPan]

The thing most interesting to me was the stats on the co-morbidities. That ID stat is pretty high. 

[sbgrace]

16 minutes ago, PeterPan said:

The thing most interesting to me was the stats on the co-morbidities. That ID stat is pretty high. 

It is...can that possibly be accurate? 

When I had my son evaluated when he was in elementary school, the evaluator said she couldn't accurately evaluate IQ score because he was (is) clearly intelligent, but wouldn't attend to the test well enough to assess. (example..timed portions and he's just continually fixated on trying to have a conversation about stories or ideas the test question is reminding him of..things like that). 

[Innisfree]

6 hours ago, sbgrace said:

 

When I had my son evaluated when he was in elementary school, the evaluator said she couldn't accurately evaluate IQ score because he was (is) clearly intelligent, but wouldn't attend to the test well enough to assess. (example..timed portions and he's just continually fixated on trying to have a conversation about stories or ideas the test question is reminding him of..things like that). 

Yes. My dd's testing was highly misleading because she couldn't /wouldn't complete all the subsections until she was in her teens. Her results indicated more about stress levels and emotional regulation than they did about intelligence. One evaluator used caution in stating conclusions based on incomplete testing, another not so much. 

Dd.Is rarely talkative, so people who didn't know her well couldn't see what was going on in her head. The faulty testing led to some inappropriately low expectations.

Edited December 18, 2019 by Innisfree

[8filltheheart]

I agree testing can be impacted but equally I have been around enough groups of autistic adults (my ds's age 27 down to 18) to recognize that my ds is an outlier intellectually in those groups. When he was in his college support groups, most of the students struggled academically due to ID vs executive function. It puts my ds in no man's land. He feels isolated most of the time bc Intellectually he functions on a completely different level, but actually functioning like an adult with his comorbidities, he is worse off than many of them.

[Lecka]

I’m very happy to see they are recommending treatment start without a diagnosis.  This is such a roadblock to early intervention when it can take a year to get in for a diagnosis in some places.  

I am also someone who has needed a doctor to write a referral for ABA every so often, and have them not know what it is.  So I am glad to see information about treatment options!  I think it is needed.  I don’t think they have had a list for doctors to look at and see recommended treatment options, and I hope it will be easier for a lot of people now that there is one. 

[ktgrok]

9 hours ago, sbgrace said:

It is...can that possibly be accurate? 

When I had my son evaluated when he was in elementary school, the evaluator said she couldn't accurately evaluate IQ score because he was (is) clearly intelligent, but wouldn't attend to the test well enough to assess. (example..timed portions and he's just continually fixated on trying to have a conversation about stories or ideas the test question is reminding him of..things like that). 

 

3 hours ago, Innisfree said:

Yes. My dd's testing was highly misleading because she couldn't /wouldn't complete all the subsections until she was in her teens. Her results indicated more about stress levels and emotional regulation than they did about intelligence. One evaluator used caution in stating conclusions based on incomplete testing, another not so much. 

Dd.Is rarely talkative, so people who didn't know her well couldn't see what was going on in her head. The faulty testing led to some inappropriately low expectations.

Yup. The first IQ testing was done at my son's school when he was still in public school. They put him in a chair that spun around and had wheels - typical office chair- and he was so fascinated with it that apparently he wouldn't listen to the questions. He tested within 2 points of the cut off for gifted, and that was with her saying he didn't listen to a lot of the questions. To me, that meant, if he can score that well without paying attention, he must be pretty smart! To her that meant he was 2 points off, nothing else mattered. So I had him privately tested with someone experienced with 2E kids, they took breaks, she would get his focus back, etc and he scored significantly higher. And that was without him being oppositional at all, so had it been a "bad" day he could have looked quite different. 

 

[ktgrok]

I am mostly glad they are actually screening. I know when my 2 yr old has had her physicals they ask a lot of screening questions that would have picked up on my son's issues but no one ever bothered to ask and as a first time mom I didn't know were red flags. 

[PeterPan]

2 hours ago, 8FillTheHeart said:

I agree testing can be impacted but equally I have been around enough groups of autistic adults (my ds's age 27 down to 18) to recognize that my ds is an outlier intellectually in those groups. When he was in his college support groups, most of the students struggled academically due to ID vs executive function. It puts my ds in no man's land. He feels isolated most of the time bc Intellectually he functions on a completely different level, but actually functioning like an adult with his comorbidities, he is worse off than many of them.

Exactly. My ds, with his support level of 2 but very bright IQ is really an oddity. Providers who meet him are expecting something different, and frankly their picture of ASD and what it means to work with a student with ASD usually means ID. 

[PeterPan]

13 minutes ago, Ktgrok said:

And that was without him being oppositional at all, so had it been a "bad" day he could have looked quite different. 

Yup, last psych who tried to test ds couldn't get him to cooperate, so his scores were 30-50 points lower. It was astonishing. And NO ONE has been willing to run a nonverbal IQ test on him, despite them KNOWING that he has severe apraxia and a language disability. 

[Innisfree]

8 hours ago, PeterPan said:

NO ONE has been willing to run a nonverbal IQ test on him, despite them KNOWING that he has severe apraxia and a language disability. 

That is just weird to me. Why on earth won't they? 

[Rosie_0801]

8 hours ago, PeterPan said:

Yup, last psych who tried to test ds couldn't get him to cooperate, so his scores were 30-50 points lower. It was astonishing. And NO ONE has been willing to run a nonverbal IQ test on him, despite them KNOWING that he has severe apraxia and a language disability. 

 

You've gotta wonder about these people, don't you?

When my dd was tested (a couple of times?) there were six years difference between her verbal and non-verbal scores, with the non-verbal being three years above average. Yeah, thanks, I'll use that info!

[PeterPan]

2 hours ago, Innisfree said:

That is just weird to me. Why on earth won't they? 

Well that particular psych said they'd "be able to tell" if the results were accurate. Haha, snort. What a crock. But even when he was younger and clearly had language issues (which he still does), no one wanted to TONI. Just totally annoyed me. Maybe someday I'll get around and make it happen.

[PeterPan]

Fwiw, the SLP flurry is all over the intervene before the diagnosis. Kinda makes  you wonder if it will shift diagnosis numbers. And how are they going to get funding for ABA without a diagnosis??? Or the doc does the referral and the insurance is compelled anyway? Or they can make SLP happen but not ABA??

[Lecka]

I can’t swear this is current — but Tricare was changed to allow ABA before a diagnosis because ——————— how on Earth is it possible to get early intervention when it’s not possible to get an early diagnosis?  And a lot of places (maybe this has changed) really did not diagnose before age 3.  How on Earth is it possible to access early intervention (in the form of ABA) that is recommended at 18 months, when that requires a diagnosis (the insurance had required a diagnosis to pay for ABA), which can’t be had until age 3 and even then — in reality it’s often more like you can’t get a referral for testing until 3 and then you go on a wait list.  
 

Also — for other early intervention there are services with no diagnosis.  My son went to early intervention screening through the county when he was 18 months old.  He started speech therapy through the county within 2-3 months of that.  No diagnosis needed.  
 

But he was not diagnosed until almost age 4, despite me bringing up concerns prior to age 18 months such that he had an appointment for screening with early intervention at 18 months.

There is — separately — just a lot more information about red flags now.  There was a lot less solid information about red flags in babies and toddlers compared to now.  A lot more in known and it’s good the new information is being disseminated to pediatricians.  
 

Also — for how we (my kids) qualify for private speech and OT through insurance, is just to take in an IEP.  No need for diagnosis.  Or — very broad and non-permanent diagnosis categories are fine for getting insurance coverage.  
 

Like — I think developmental delay is one, that’s very broad, allows insurance coverage for speech and OT for our insurance if those are on the IEP, and has to be re-evaled and either changed to another category or just go away by a certain age (like age 8 or 9 or something).

This is how some preemies can get early services too and they very often do not get diagnosed with anything later, but still needed early services, and it functions as a way for them to get services while not being given a diagnosis.

So really — it could just be our insurance, that it seems very sensible, because to me it seems like how things already work, just adding in the possibility of getting ABA as a toddler. 
 

 

[Lecka]

Honestly it doesn’t make a lot of sense to me that it’s okay to have speech, OT, PT, and special play groups as part of early intervention, for kids with no diagnosis but meeting a cut-off on a screening, but then somehow ABA is so different.  To me — it makes sense for it to be the same way as other things that already are part of early intervention.  
 

It is already part of early intervention — you don’t know if a kid is going to get diagnosed with something later or not.  But you either intervene early or you don’t and then kids who would have benefited miss out.  It is inherent to early intervention.  
 

And many kids in early intervention don’t go on to have any diagnosis or IEP.  My son had special needs pre-school with some kids who were preemies and had tons of services from birth, and really were doing well by Kindergarten and 1st grade and not receiving any services then.  I think it is a good system to be honest.  I think it makes sense for ABA to be more and more just a regular part of early intervention.  

[PeterPan]

But ABA is huge money, hours. And you're shifting how the child responds to adults, which could throw the ADOS. Do they have data on that to know how accurate the ADOS will be when kids have had 2-3 years of ABA before receiving it and how much affects sensitivity? 

And that's not necessarily all *bad* if you're saying well they're receiving the services. That's what the IEP process is about anyway, what services are needed. BUT if the question is what medically is going on, then affecting sensitivity by changing the population going into the testing without renorming the testing isn't cool. It's going to leave parents hanging, wondering whether the dc would have tested as ASD had they not gotten intervention first. It's like kids getting a year of OG via RTI and then the school saying see, your CTOPP is fine, no label needed. But the kid still has genes and the reality of his disability, even if they've improved some factors enough (at that snapshot) that scores look better.

In the long run, parents want to know what's going on, what it is, not just what services are needed. I'm not saying don't intervene, but it's going to make that sticky. Now ds' scores were in Kanner range AFTER a year of ABA. And for dyslexia, yeah he was diagnosed but multiple psychs even after getting LIPS and Barton. So it's not like intervene completely precludes diagnosis. But I think it will make it sticky and affect sensitivity. They should then re-norm the tools or make sure the tools are still going to have good sensitivity given how much they could be altering things. 

I've got multiple stories in my mind, people I know irl, where this has happened across disabilities. They intervened and moved the markers so then it's questionable whether the dc gets diagnosed. And that doesn't really serve the dc well in the long run either, because even when you intervene, the subtle challenges are still there. So to say well your CTOPP is now in the normal range so we don't care, you don't need accommodations, you don't need to know you have dyslexia, etc. is absurd. So likewise, if your ABA pushes the scores just enough that the dc is not tripping the ADOS (because they worked on joint attention, etc. etc.), then does that serve the dc well or only delay diagnosis and frustrate the parents?

[Lecka]

But the ADOS changes anyway.  

[Lecka]

It is a goal of treatment to improve the score on the ADOS.  

[Lecka]

It is not a static thing.  
 

It would be good if kids had early intervention and then didn’t need a diagnosis because they were *actually doing better.*
 

Or if they got a better score on the ADOS because they were *actually doing better.*. That is the whole idea.  To actually have things be better.  

[Lecka]

Now it depends on so many things — but this is inherent to early intervention — the idea that with early intervention, kids will actually be doing better than they would have done without early intervention.

So that is just inherent to early intervention.  That’s not just an autism or ABA thing.  

[Lecka]

Basically I would say — parents will be told “here is an ADOS score reflecting your child’s performance on the ADOS.”  
 

And if it is higher than it would have been without early intervention, then that means the child is doing better.

And recommendations will be from current levels, not imaginary levels that might have been current levels without early intervention.  

[PeterPan]

4 minutes ago, Lecka said:

Or if they got a better score on the ADOS because they were *actually doing better.*. That is the whole idea.

Oh dear. So you're saying my ds' score on the ADOS would have been *higher* if we had gotten it done before the social skills groups, the year and a half of ABA, etc. etc. Oh my. That could explain a lot.

[Ivey]

On 12/18/2019 at 1:44 AM, sbgrace said:

It is...can that possibly be accurate? 

When I had my son evaluated when he was in elementary school, the evaluator said she couldn't accurately evaluate IQ score because he was (is) clearly intelligent, but wouldn't attend to the test well enough to assess. (example..timed portions and he's just continually fixated on trying to have a conversation about stories or ideas the test question is reminding him of..things like that). 

That stat sounds about right to me. I've always heard/read that 40-50% of people diagnosed with autism have ID, but it makes sense that it's quite a bit lower when Aspergers/ASD Level 1 cases are included. 

Ds15's scores have fluctuated over the years, but even when they were "low" overall he scored high enough on some subtests that it was clear he didn't have ID. Those psych reports were full of caveats and detailed explanations of why certain scores were or weren't likely representative of Ds's true abilities. 

22 hours ago, PeterPan said:

Yup, last psych who tried to test ds couldn't get him to cooperate, so his scores were 30-50 points lower. It was astonishing. And NO ONE has been willing to run a nonverbal IQ test on him, despite them KNOWING that he has severe apraxia and a language disability. 

That's just weird. We had an almost opposite experience last spring when Ds15 was assessed by the public school psych. Because he has ASD and a history of language delays, she said she had to administer the Wechsler Non-Verbal rather than the WISC. This is *after* she saw his testing from 2016 stating his overall language and verbal comprehension were in the average range. The WNV is very brief and doesn't include index scores, so we ended up getting a WISC (and a few other tests) done privately over the summer and talking his school into considering both reports. 

[PeterPan]

1 minute ago, Lecka said:

And recommendations will be from current levels, not imaginary levels that might have been current levels without early intervention.  

But it still won't answer the question the parent has about whether it's autism. And it won't matter if the dc is support levels 2/3, because they still get diagnosed. But for these higher IQ, ASD1 kids, I think it will matter. It's a great thing, but it means families could end up not getting clarity for years and be left hanging and wondering. 

It's a nuance, the idea of it as a treatment score vs. a definitive "test" that probably isn't where people are starting.

[Lecka]

Just to say my personal experience..... my son’s ADOS score improved by 4 points.  This reflects actual progress and improvement.  
 

He is no longer someone who has that lower score.  He is no longer going to be a fit for recommendations that go along with the lower score.  
 

His current levels are what they are.  Autism is like this.  Kids change as they age and in different ways.  

[PeterPan]

1 minute ago, Ivey said:

That's just weird. We had an almost opposite experience last spring when Ds15 was assessed by the public school psych. Because he has ASD and a history of language delays, she said she had to administer the Wechsler Non-Verbal rather than the WISC. This is *after* she saw his testing from 2016 stating his overall language and verbal comprehension were in the average range. The WNV is very brief and doesn't include index scores, so we ended up getting a WISC (and a few other tests) done privately over the summer and talking his school into considering both reports. 

So do WNV scores correlate well to anything? Or were they kind of uninformative, hence wanting the WISC?

[Lecka]

Higher as in worse.  It’s possible.  Some kids’ scores do change.  Other kids’ scores do not change.  My son’s score improved by 4 points (to be 4 points lower/better).  
 

If he improved on core skills assessed by the ADOS — then yes it makes sense he would have a different score.

It’s also common for kids to improve but have about the same score on the ADOS, because they were improving in ways not specifically measured by the ADOS.  That is a thing, too.  

[PeterPan]

2 minutes ago, Lecka said:

Just to say my personal experience..... my son’s ADOS score improved by 4 points.  This reflects actual progress and improvement.  
 

He is no longer someone who has that lower score.  He is no longer going to be a fit for recommendations that go along with the lower score.  
 

His current levels are what they are.  Autism is like this.  Kids change as they age and in different ways.  

And I guess that fits with the idea of psychs saying well these girls pass the ADOS but still need to be diagnosed. If they're viewing it as a "where you are for support/interventions" vs. "what your medical diagnosis is" then that works.

Edited December 19, 2019 by PeterPan

[Lecka]

No the ADOS is just one way to diagnose autism.  
 

What I have heard more is — if it’s not flagging the ADOS probably you don’t need ABA.

That is not the same as having autism or not.  
 

There is more to diagnosing autism than just ADOS scores.  It’s known to miss many people, especially girls.  It is just one part of a diagnosis.

But I think it’s more accepted to use it to say — is ABA recommended as appropriate.  
 

Because there are other recommendations (like for counseling) that are a lot more appropriate for some people.  

[Lecka]

To give another example with my son.

His joint attention really is much better.  This is reflected in his real life.  This is reflected in his ADOS score being higher.

A lower score really does not reflect his current level, because — he really does have some of these skills now.  

[Lecka]

This is also part of the whole debate of — are people who had an autistic disorder diagnosis as a child and then Aspergers as an adult — what is up with that?  Is that really Aspergers or should it be high-functioning autism?

That whole debate ————— really boils down to — people do change with age and sometimes with intervention.  

[Ivey]

1 minute ago, PeterPan said:

So do WNV scores correlate well to anything? Or were they kind of uninformative, hence wanting the WISC?

The WNV is a very brief measure that includes 4 subtests - matrices, picture arrangement, spatial span, and coding. It yields an overall "Nonverbal IQ" score, but no index scores for processing speed, working memory, visual spatial, etc.

The WNV said that my child's Nonverbal IQ was below average, because it includes coding where he scored in the 1st percentile. The WISC said that his FSIQ is average (coding is included, but as 1/7 rather than 1/4), GAI is above average, and processing speed is very low. Which is quite a bit more informative than "below average Nonverbal IQ".

[Lecka]

Peter Pan — back to a previous comment about ASD 1 kids not having clarity for years.

In my previous town — their earliest age of diagnose would be 9.  They weren’t having any clarity at all for years, already.  

I think that’s a valid concern but I don’t think that early intervention is something that will make it a lot worse.

If anything — I think if the kids currently getting diagnosed at age 9 (in reality in many locations) are screened earlier and have red flags earlier and the parents are aware — to me that would mean more clarity.

And I also think it’s inherent to autism to not know a lot of things at younger ages, because testing at younger ages is often not predictive.  

[PeterPan]

1 hour ago, Ivey said:

The WNV is a very brief measure that includes 4 subtests - matrices, picture arrangement, spatial span, and coding. It yields an overall "Nonverbal IQ" score, but no index scores for processing speed, working memory, visual spatial, etc.

Thank you for explaining all that! Well that explains why psychs aren't bothering to run it. With ds' SLDs, the coding scores, digit spans, etc. would be junk. So, like you're saying, it wouldn't tell us much useful. 

Well good, you've relieved me of something that has bugged me for a few years now, lol. 

[Lawyer&Mom]

“Diagnosis later than 6 years of age was reported in one-third to half of children. Later age at diagnosis was associated with reported mild presentation.”

I saw red flags at three, we didn’t successfully get a diagnosis until six.  It makes me feel better than a huge chunk of kids aren’t getting diagnosed until after six.  I’m not alone on my boat!

An earlier diagnosis would have been nice, but my kid has a mild presentation with deficits that just weren’t quantifiable at an earlier age.  What can you do?

[kbutton]

On 12/18/2019 at 7:01 AM, 8FillTheHeart said:

I agree testing can be impacted but equally I have been around enough groups of autistic adults (my ds's age 27 down to 18) to recognize that my ds is an outlier intellectually in those groups. When he was in his college support groups, most of the students struggled academically due to ID vs executive function. It puts my ds in no man's land. He feels isolated most of the time bc Intellectually he functions on a completely different level, but actually functioning like an adult with his comorbidities, he is worse off than many of them.

I think that there are a much higher number of high IQ individuals on the spectrum than is commonly known, but they all have different mixes of issues. My son does not find school a pleasure even with his IQ, but he's planning to go into the building trades. 

I am friends with enough families where autism is in the mix with the kids to know that there are adults "passing" who are 2e and have challenges that are often not seen except behind closed doors. Lots of niche jobs or high job turnover, higher qualifications than pay, and a lot of spousal support (with sometimes overwhelmed spouses). 

So, were kids in the college support groups identified as having ID? I'm just curious as my son's more difficult areas would present as being very low, but he's actually profoundly gifted. It took the "right" testing at 13 to turn up his PROFOUND language problems, and it made the academic struggles (big potholes across academic domains where he otherwise excelled) make so much more sense. IQ testing barely hinted at it. Anyway, I can see some kids having learning issues that are eclectic and ill-defined but look like ID. Okay, I guess I am asking, what would kids with ID be doing on a college campus taking classes, etc? 

That said, I am with Peter Pan that intervention specialists, speech therapists, etc. really have NO CLUE how to help kids who are on the spectrum that have really high IQs. EVERY intervention specialist (except for one tutor my son has had that is not technical an IS), has asked me what to do after trying stuff and not getting the expected result. EVERY ONE. It's maddening. He's benefited from working with them anyway, but the ones that have made academic progress have had to jettison their ideas of what should make sense and just plow in. They have to embrace that a kid with his vocabulary who can hold a back and forth conversation really does have a language disability that thwarts it all. Those who can't do this end up blaming it all on ADHD (which is well controlled with meds). 

[kbutton]

4 minutes ago, Lawyer&Mom said:

“Diagnosis later than 6 years of age was reported in one-third to half of children. Later age at diagnosis was associated with reported mild presentation.”

I saw red flags at three, we didn’t successfully get a diagnosis until six.  It makes me feel better than a huge chunk of kids aren’t getting diagnosed until after six.  I’m not alone on my boat!

An earlier diagnosis would have been nice, but my kid has a mild presentation with deficits that just weren’t quantifiable at an earlier age.  What can you do?

It was almost 9 here. We did have some red flags early, but until someone told us how those red flags presented for 2e kids, we didn't recognize them. We also had a lot of bad information about how kids with autism respond to people, etc.--the standard was that if they aren't attached to a screen, speaking like a robot, refusing all eye contact, and disinterested in people, they couldn't be having the social problems that come with autism. Also, we were in a church where several kids probably had autism and were 2e (a larger smallish church for our area). We don't attend there anymore, but it was clear that those kids made our son look pretty typical, lol! From the families we've kept up with, two kids were flagged, but I think they both lack a formal diagnosis because local and church culture discouraged that kind of discovery, honestly. Or if something was different about a kid, heaven help that you'd do something about it unless it involved something alternative. Sigh. I also think, locally, that until very recently, schools and other entities have done a poor job of identifying 2e kids with autism (the big children's hospital near us has a reputation for blowing off 2e kids that aren't at least a support level of 2; I would go so far as to say they have a bias against 2e kids with autism). 

[Lecka]

https://scholar.google.com/scholar_lookup?author=J+Baio&author=L+Wiggins&author=DL+Christensen&title=Prevalence+of+autism+spectrum+disorder+among+children+aged+8+years+-+autism+and+developmental+disabilities+monitoring+network%2C+11+sites%2C+United+States%2C+2014&publication_year=2018&journal=MMWR+Surveill+Summ&volume=67&pages=1-23
 

So I guess this is where the prevalence number?  And it looks at age 8?  And I am not sure what type of site they are.

I do think — kids might not be diagnosed that young, and also, might not be diagnosed at that kind of site.  
 

Those both seem like they are things that would skew the numbers.  
 

 

[8filltheheart]

@kbuttonAssumption on my part. These kids were in classes like math 3 which was the lowest remedial math focusing on basic math while ds was beyond cal. The program offered tutoring which my ds never needed but many of the kids were in jeopardy of flunking. 

[kbutton]

1 minute ago, 8FillTheHeart said:

@kbuttonAssumption on my part. These kids were in classes like math 3 which was the lowest remedial math focusing on basic math while ds was beyond cal. The program offered tutoring which my ds never needed but many of the kids were in jeopardy of flunking. 

Yeah, that could be hard to interpret without knowing a lot more. It's clear that my son's innate ability is not enough to help him succeed without some 1:1 help. Even in math where his WJ scores and IQ test suggest he should be well beyond where he is (which is not remedial, not accelerated due to 1:1 work). But his comp and lit skills are all over. He's making huge strides now that some of the lower level holes are filled in, but he is borderline remedial on some English skills. If he had a high average IQ, I am sure he'd present with more intense symptoms of his academic difficulties, and it would be remedial.

I would bet that unless they are offering programming specifically for kids with ID, there is a mix in the program of kids who have ID or have borderline scores, and kids who are capable but struggle to combine abstract reasoning with academics. My son's abstract reasoning is exceptional as long as it's nonverbal. It just does NOT cooperate with language (including language related to math) in spite of his gifted verbal IQ scores. I think he could be a later bloomer in this regard, but he's just not really interested, and his strengths/interests suggest that he'll always want to work with his hands (it's a strong trait in my family, and my DH is very hands-on as well even though he has a master's and works in a field that is thought of as intellectual).

That said, if the program doesn't work for your son, it's still not helpful! I am sorry to hear that. My son is an outlier too, but he's been fortunate to have a path that looks like it will work as long as we can stomach the insinuation from some corners about squandering his brain (thankfully not from close family!!!). I hope your son can eventually find some community that is supportive to him. 

[kbutton]

I wonder what it would take to identify kids who are outside the main pack in some way and design programming that targets them? I mean, 8's son and mine are both outliers, and I bet on paper they have similarities, but yet, my son's needs are very different. 

It would be really nice if the early interventions and outcomes then lead (quickly) to identifying an obvious group of outliers, and then the outliers get some research and programming recommendations that help intervention and therapy folks know what to do with them. 

[4KookieKids]

On 12/19/2019 at 8:15 AM, PeterPan said:

Oh dear. So you're saying my ds' score on the ADOS would have been *higher* if we had gotten it done before the social skills groups, the year and a half of ABA, etc. etc. Oh my. That could explain a lot.

I think about this a lot with my three autistics. My ds wasn't diagnosed until age 7, but the professionals we saw at that point said we had been doing all the right kinds of "early interventions" that they would've suggested anyway (explicit social skills teaching, visual schedules, clear routine, etc.) - we just didn't know they were a "thing," and were making things up as we went along. By the time we had three more kids and suspected two of them were autistic, they'd been in speech and OT and had similar social skills teaching for years (we do lots of social thinking stuff in our "free time"), just because it's what we *did* at home. ADOS scores were near cut-off for both (one just over, one just under), but I strongly suspect those scores were impacted by all the interventions/teaching we'd already been doing.

[4KookieKids]

On 12/19/2019 at 10:23 AM, Lawyer&Mom said:

“Diagnosis later than 6 years of age was reported in one-third to half of children. Later age at diagnosis was associated with reported mild presentation.”

I saw red flags at three, we didn’t successfully get a diagnosis until six.  It makes me feel better than a huge chunk of kids aren’t getting diagnosed until after six.  I’m not alone on my boat!

An earlier diagnosis would have been nice, but my kid has a mild presentation with deficits that just weren’t quantifiable at an earlier age.  What can you do?

 

We had red flags with all three of my autistics by age 2. I take a little bit of an issue with the claim in the article that later diagnosis were associated with mild presentations. Our presentations were NOT mild -- they just didn't fit the boxes nicely and weren't easily seen for what they were at that age. I didn't know what I was looking for or understand what I was looking at. Come ages 7 and 8, I'm taking an 8 pages single-spaced document to everyone we see, outlining all of the struggles/flags we've seen since age 2. Finally, with my oldest dd, it dawns on me that it might be autism, so I went and wrote out categories for social interactions, rigidity, and repetitive patterns, and when through my 8 page document to sort things into categories, and realized that *every single* issue in those 8 pages fit into one of those three categories -- I just didn't see the pattern when I wrote out the document as a linear thing based on time/age. I was dumbfounded and quite upset that I'd not made the connections before. For a kid who was almost given anti-psychotics because nobody could figure out what was wrong with her, I would definitely argue that her presentation was anything *but* mild. But she's a girl, and a smart one at that, and her presentation was not "typical." I'm not bashing the professionals; even I answered "no" to the question of her lining things like cars up -- only to realize the day after that she rearranges and lines up her books on her shelf and the clothes in her dresser on a daily basis. The questions themselves led me to look for a certain presentation, I feel in hindsight. Once I focused exclusively on the diagnostic criteria, she was clearly met it. 

[kbutton]

1 hour ago, 4KookieKids said:

The questions themselves led me to look for a certain presentation, I feel in hindsight. Once I focused exclusively on the diagnostic criteria, she was clearly met it. 

Well said. 

[beaners]

I'm wondering where they are going to find all these ABA providers for the kids who will be eligible by these guidelines. Some of the wait lists around the country are staggering. 

Then you have a lot of professionals who don't know what it is. When I requested ABA at an IEP meeting the only person in the room who knew what it was, out of a dozen people, was the behavioral therapist on consult services. That son is in a contained life skills classroom full of kids with autism.

I think expansion of therapies would make an even bigger impact than just early screening. But the AAP can't just command new therapists to suddenly appear. 

[Lecka]

Not to mention insurance coverage.