Difficulty identifying HFA?

Amy and Jay · August 2012

My DD is 3.5 and we have some concerns about ASD and SPD. We had her evaluated by a school psychologist at 2.5 and she felt that it wasn't ASD at the time but now, a year later, I'm still seeing things that concern me and I wonder how likely it is to miss a diagnosis of HFA at that age? She has a speech delay, poor eye contact, social issues, obsesses over certain toys, repetitive behaviors, has tantrums that she can't calm down from, afraid of loud noises, high pain tolerance, etc. She has an IEP for speech and the school evaluated her on her 3rd b-day and felt that speech was the only area of concern. We actually met with a private OT this summer who felt that there were some SPD issues and had some concerns about ASD as well. Sorry for the novel, I guess I'm just wondering if any of you have a child who had a diagnosis of HFA that was missed early on?

Karalyn44 · August 2012

It absolutely happens. My oldest was in EI from 18 months through 3 years for speech only. He was evaluated by the school district right before his 3rd birthday, and again, qualified for speech only. However, about 6 months into small group ST, his therapist pulled me aside to tell me that she was seeing several red flags and that she would like permission to have him re-evaluated. In hindsight, the red flags had been there all along (poor eye contact, sensory issues, lack of joint attention, a majority of his speech was echolalic albeit appropriate, difficulty with social situations, tantrums, etc), and while we had voiced concerns about individual behaviors, we didn't know enough to put all the pieces together, and none of the professionals we'd worked with caught the big picture either. Even when he got his dx, everyone caveated it by saying, "He meets the criteria now, but that could and most likely will change as he gets older;" in other words, it was a best guess. He will be 7 in a few weeks, and while he has made progress in leaps and bounds over the last 3 years. there is no.doubt that he is on the spectrum.

Listen to your gut-- I would seek out a private eval with a developmental pedi. Good luck!

Amy and Jay · August 2012

Thanks for your replies. We've already asked our pediatrician to put in a referral for us for the developmental ped. (although I haven't heard what the wait time is yet) and I had already told the county that I wanted an OT eval back in April but they told me to wait until school starts this fall. Sometimes I question myself as to whether or not I'm making things a bigger deal than they are but my gut tells me that there is more than just a speech delay going on.

Karalyn44 · August 2012

If you're requesting an OT eval from the schools anyway, I would go ahead and request a full multifactored evaluation, including the ADOS and any other evals they would do when an ASD is suspected. Certain evals are invalid if performed more than once in a 12 month period, so what they can do may be limited by what evals they did when she turned three. No matter what, I would absolutely pursue a private eval. The pediatric neurologist who gave DS his medical dx reminded us that at the end of the day, it's not a specific dx that determines treatment, it's the particular symptoms that your child exhibits. Even if a private eval yields no specific answer, it will at the very least help you to determine what therapy approaches will best benefit your DD. As Auntie said, at this age it can be very difficult to parse out the true nature of behaviors, and the one thing I can promise is that the picture will get clearer as your DD gets older. Not much comfort right now, I know, but hang in there. You're doing the right things!

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