I have followed this thread with interest as I have had no success convincing our own pediatrician that further evaluation is warranted for our 2.5yo who has been recommended for speech therapy by the county. I have explained our observations of DC's sensory sensitivities and repetitive behaviors (in addition to speech issues) and it seems to have fallen on deaf ears. I guess I am at a loss for a good way to explain to the pediatrician why we suspect there is more to what's going on w DC than simple speech delays, and ask for referral to specialists like those discussed here.

OP, we went through the KKI research assessment when my DD was 19 months and she also qualified for the study, showing "mild" signs of an ASD. Later assessments with a couple different dev. peds around her 2nd birthday also put her on the spectrum for purposes of designing the right therapy plan, but also let us know that she may not meet the ASD diagnosing criteria by the time she starts kindergarten. While we've done a lot of the legwork in putting together what we think is the right mix of therapy for our DD, our dev. ped. (and others at KKI CARD) have been very helpful in making suggestions and letting us know when they think something is or isn't worth doing. We just had a 6 month follow-up with the dev. ped. (my DD is now 2 1/2) and while he does still think she's on the spectrum, he repeatedly commented what a difference he thinks early intervention has made, particularly with language and play skills (at the same time, we're starting to see increases in social anxieties and self-stimulatory repetitive behavior). So bottom line, I'm happy we had the early assessments and got started on therapy at a young age, regardless of what her diagnosis is now or later on.

True, but it also doesn't take much research to find out that many experts support early detection/intervention efforts where warranted to target needs and give young ones' brains the benefits of starting therapies early.

It doesn't take much research to find that ASD Dxes when a child is under 3 years old are OFTEN wrong, like in the area of 40 percent to 65 percent wrong in NIH studies.

That doesn't mean you can't work on any symptoms much earlier, but the new DSM 5 is making it much clearer that autism is not a language disorder at its heart.

We took our dc to Kki at age 3 for speech delays. It was worth the money. Turns out dc has both expressive and receptive speech delays but not asd. Best of luck.

Anonymous wrote:I think it is difficult to diagnose ASD with absolute certainty until a child turns 3. My own DD will soon be 3 and only recently got an ASD diagnosis. At 17 mo and 24 mos, a developmental ped was only willing to say that DD had global developmental delays. Other specialists (SLPs, OTs, neurologist, etc) said they didn't suspect ASD. I think the best approach is to treat the child according to the worst case scenario... so, if you think there is any chance your child is on the spectrum, it's best to get the appropriate services now.

PP here - sorry, I have to disagree with this. We knew with ABSOLUTE certainty with the help of expertise at the KKI CARD that my DD had Autism when she was not even 2 1/2 years old. I cannot emphasize enough how the testing from the Dev Ped we saw in NoVA differed from the testing they did up there. It was CRYSTAL clear. And the fact that we did get the diagnosis on the early side has only had positive impacts - our DD is now just shy of 6, she is quite verbal, is developing social skills, and is learning to read and do math. I'm amazed!

OP - we live in FFX County, and the first Dev Ped we saw was Beverly Powell (she may have retired by now?). Our DD received services through ITC for about 5-6 months, and then when she was a bit over two, she started in the FFX County non-cat preschool. She was in the non-cat program for about 2 1/2 months before she was moved into the PAC program.

Dear OP - I think you should consider going to KK. Once a child has a certain number of flags/issues/diagnosed delays the choice of what interventions are the highest priority and the real cause of the delay gets complicated. By getting a team evaluation, you are getting access to a lot of experts in one shot. I have friends who use KK for diagnosis and big picture discussions including a detailed intervention plan. Then they use KK to find folks closer to home to provide the week-to-week interventions in accordance with the KK playbook. So, that is what you get from going to KK experts to put together a playbook specific to your child.

Mild delays - perhaps not worth the trouble. But if you are dealing with multiple significant issues, then it becomes worth it.

That said - parents always have to be hyper-organized, keep all assessments, .... Parents sometimes put 2 and 2 together years before the expert does.

Oh, and to answer the question about criteria that had to be met for the ASD study, they used a couple of assessments including the ADOS and that is where they noted a lack of imaginative play and the issues with expressive language, as well as sensory aversions to a couple of the "toys". I have not seen the clinician's written report yet, so this is just from my novice memory.

OP here, Thanks to you all. The only consensus so far seems to be that expressive speech is delayed so at least I know that is something we can address. I hear what you all are saying about the young age, and accept that it may take time to become clearer. Thank you sincerely for sharing your perspectives and experiences.

I think it is difficult to diagnose ASD with absolute certainty until a child turns 3. My own DD will soon be 3 and only recently got an ASD diagnosis. At 17 mo and 24 mos, a developmental ped was only willing to say that DD had global developmental delays. Other specialists (SLPs, OTs, neurologist, etc) said they didn't suspect ASD. I think the best approach is to treat the child according to the worst case scenario... so, if you think there is any chance your child is on the spectrum, it's best to get the appropriate services now.

What criteria did your child have to meet to qualify for the study?

My own DD had lots of "red flags" when she was 1 and 2. However, as her language has come in and as she has matured, they have dropped off and now at age 3, a dev ped has been able to determine that autism is not her issue at this point.

I took DD to see a dev ped at 20 months, 28 months, and 36 months. The first two visits the dev ped speculated that it was a language issue and not autism but said it was too soon to tell, and the third visit the dev ped was willing to rule out autism except for the highest functioning kind, which is still not suspected. When people see her now for the first time, they think I'm nuts when I tell them we were worried about autism with her.

I do not regret taking her to see a dev ped, but when she was 1 and 2, we didn't get as valuable information as we did when she was 3. It was just too soon to really figure out what was or wasn't going on with her. And I still think we have a quite few years to go until we get the full picture of her issues -- adhd? language disorder? auditory processing? other?

We are in fcps, and the non-cat preschool program has been FANTASTIC for my daughter's development. I cannot say enough good things about the program. A child with enough delays can attend starting the Sept. after he/she turns 2.

OP- thanks SO much, I was this close to calling CARD today and think I will. ITC is coming for the in-home initial assessment next week. Since I am also in NOVA may I ask which preschools your DC has attended? Thnks again for sharing your experience.

Hi OP - I'll tell you my experience and then let you make the call based on what's right for you/your child, since not all cases are the same. When my DD was around 18 months, we were also noticing some mild expressive/receptive language delays, so our pediatrician prompted us to seek an evaluation through Infant & Toddlers. They did an eval and didn't have anything specific to say, but they did recommend follow-up with a developmental ped. We saw one here in NoVA, and she did not give us a diagnosis, but told us to "wait and see". By then we had started private OT and an Infant Educator 1x a week. We saw this same dev ped about 6 months later, and were basically told the same thing - no major concerns, wait and see. I was concerned, though, so I made an appt at KKI CARD and luckily got in rather quickly (only a 6 week wait) due to a cancellation. We saw a speech/language pathologist for an initial evaluation, followed by a visit with one of their doctors. Our DD was about 2 1/2 months old at this point. After going through their evaluations vs. the other dev ped, it was crystal clear to all involved that our DD had autism. The diagnosis made a significant difference in the way we approached treatment for our DD, as well as the services we received, and she started in a preschool autism program almost immediately (she was in a different special ed preschool before this). We have only been back to KKI for 2-3 follow-up visits since then with different practitioners, but our experiences have been overwhelmingly positive. Hind-sight is 20-20, but we should have contacted KKI as soon as we received the first wishy-washy report rom the Dev Ped in NoVA. So if you have concerns, there is no harm in asking for a referral and following your gut. And you may found out there are no long-term issues to worry about.

After seeing reference to the KKI research studies on this board, I brought my 2 yo DC in for potential participation in a study of toddlers with ASD. DC qualified for the study based on 2 assessments, and that is the first time someone has suggested ASD (pediatrician and child psychologist noted mild expressive language delays but nothing more)

I am waiting for a report of their findings, but wondering if it would be helpful to ask pediatrician for a formal referral to KKI for a more thorough eval for DC. ( I know my insurance covers visits there w a referral) Seems like there are mixed opinions on this board on the value of a developmental pediatrician for a young child with mild delays, but the KKI researcher got me wondering if there is more here than just speech delay.

Thanks in advance for your thoughts