ASD - educational diagnosis vs. medical diagnosis

chardonnay24 · February 2014

My son just turned 3 and had an evaluation with ECE because he's aging out of EI. They told me that they saw several indicators of ASD and suggested that we proceed with the evaluation through the school district to try and get an educational diagnosis. We are in the process right now and will have a decision on Valentine's day. We saw the developmental pedi today and he pronounced my son as "completely typical" and said that he saw no indicators for ASD. He agreed to refer us for an evaluation, but said that often, kids receive an educational diagnosis but not a medical diagnosis. I'm frustrated and at the end of my rope for dealing with his challenging behavior on my own, but we cannot receive private therapy through our insurance without a medical diagnosis.

So ASD moms, did anyone get a diagnosis through the school but not a medical diagnosis? I'm now second guessing myself about going through with the medical evaluation, but the results from the school's evaluation vs. the developmental pedi were so different. School said that he was "severely delayed" in communication, social/emotional, and had sensory issues, but the developmental pedi said that he saw no delays in those areas.

MirandaHobbes · February 2014

It does seem unusual to hear unequivocally no from the developmental pedi and the opposite from the school. When DS was first diagnosed his regular pedi was doubtful that he had any delays, but referred us to the school district anyway. When we came back for his 2 year well child (after DS had been receiving therapy for 4 months) he had experienced such a language explosion that the regular pedi said that he may "outgrow" the diagnosis because our school district (a large urban district with a history of having a disproportionately large number of minority children with ASD) seemed to cast a wide net when they provided educational diagnosis' to encompass any type of delay and basically provide as many services to toddlers as possible. This was not what I needed to hear at the time, and I latched onto it thinking my son would age out of his diagnosis. As he got older it became plainer that he did in fact have ASD and we visited a developmental pedi who provided quite a different assessment than the regular pedi.

I hope you get some clarity soon, what a rollercoaster.

chardonnay24 · February 2014

We have this this dev. pedi since my son was 18 months old and we were referred by his regular pedi. He's never spent more than 30 minutes administering the evaluations or talking to me and has always said that he is typically developing, which is contrary to what we've been told by every other professional (behavioral therapists, BCBA, OT, SLP) we've seen. I'm not sure what evaluation he used - the test consisted of a basic shapes puzzle, identifying colors and shapes, basic counting, asking him to finish drawing a face, folding a piece of paper, and stacking blocks. He didn't ask me a lot of questions, but I volunteered that my son lacks social skills with peers (still working on parallel play), is aggressive, eats a lot of nonfood items as well as sticks things in his nose, is highly inflexible, and lacks imaginative play unless he has a) seen in somewhere (like TV) or b) is being prompted ("Can you feed the baby? Can you put baby to bed?")

None of that was concerning to him because A has a large vocabulary, speaks in sentences, and uses language to label and get his needs met, plus his cognitive skills have always been above average.

He does better in the classroom than he does with me, but he still doesn't engage with peers or show imaginative play, and has "trouble listening" and is "very independent". He doesn't seek comfort when hurt or listen to suggestions ("why don't you do it like this?" for example), but he does at least respect the authority of the teacher and is mostly compliant as long as they follow the schedule, which is not what I am seeing at home or out in public, like library storytime or gymnastics class.

mommytoconnor · February 2014

Oh I know how frustrating this is for you. I have been in same boat. My son has speech delay and at 18 month appt I pushed for speech eval, which then led to OT eval and got a dx of SPD. Went to devel peds and she agreed that she didn't see ASD but definately SPD, but of course was a bit early to diagnose for sure at this early age. Forward to now he is age 3.5 and still has speech delay and SPD and new dx of ADHD, but still no ASD, which I am torn. I don't see ASD in him but alot of SPD and even ADHD things can look like ASD and vice versa. He has had evals from develop peds, neuro, ST,OT,PT, peds psych x2 and everyone agrees no ASD but definately SPD. That's hard because then he doesn't qualify for services he needs. Right now his behaviors are all over the place, if he is sensory balanced he is great, just got star of the day yesterday, then today his preschool teacher said it was a really rough day for him. I am also feeling your pain at being at a loss for what to do. The system can be so hard to navigate thru. My son's speech delay has much improved but he is still behind. When he has his preschool eval at 2 yrs 9 months, he qualified only for speech but barely. The way they classify kids is odd to me. For instance my son, at his eval, couldn't even be understood probably by 90 % of the words he said but he got credit for "attempting" to say something eventhough it was unintelligible. How does that work? I feel for ya and am sending you hugs.

chardonnay24 · February 2014

-auntie- said:

Sounds like you need a different dev pedi. Maybe one who hasn't already formed an opinion about your son. I'm sorta LMAO about the language piece. DS has ASD. He had complete sentences at 15-16 months. His vocabulary at 7 was at high school level.

@MirandaHobbes

Do you live anywhere near here?

https://www.nytimes.com/2013/12/17/health/study-links-autism-and-somalis-in-minneapolis.html

I agree that we need a different one, I have never been happy with him. I feel like he doesn't spend enough time with my kiddo and doesn't listen to my concerns. We tried to switch to a different children's hospital, but the two other children's hospitals in our area are not taking new patients at this time.

I asked to schedule an ASD eval anyway, and he agreed, but unfortunately, he is on the diagnostic team, so I'm not expecting that it'll go well.

Also, I laugh about the language piece as well, only because his language is actually not very good for his age, from what I've seen from peers. He has a large vocabulary, yes, but the way he uses language is...off. I guess I would say that his language is functional but not conversational, and most of his phrases are learned. He does a really good job of "appearing" typical. He has a collection of phrases, and changes the noun to fit the situation. He doesn't use pronouns or articles unless he is copying a sentence that he heard somewhere else.

d.f · February 2014

After a 1.5 hour long initial appointment (and 20+ pages of evals filled out by me and several pages by his preschool team) DS's Dev Pedi said her gut and clinical opinion was that it wasn't ASD. However, she thought a Non-verbal LD might present later and/or ADHD (he was about 3.5 at the time). She referred us to a psych for a full developmental eval (and an OT and speech eval). The Psych teased out PDD-NOS and a lot of his ADHD flavored behavior has largely disappeared since we've gotten a better handle in his sensory issues.

My DS is still categorized as a "Preschooler with a Disability" at school. It'll be interesting to see what the school label is next year after his tri annual evals (in my state the preschooler w/ a Disability is only used until age 6)

MirandaHobbes · February 2014

@MirandaHobbes
Do you live anywhere near here?

https://www.nytimes.com/2013/12/17/health/study-links-autism-and-somalis-in-minneapolis.html

@auntie

Yup, home sweet home. It's a very divisive issue for the school district. I heard one of the moms quoted in the article speak at a legislative hearing and people practically came to blows. Lots of interesting theories on why the link, but no answers yet.

Actually, I don't think I really absorbed that the rates are so much higher for white students as well. It has to be in the way they are diagnosing, no? But for the near average rates for other minorities I guess.

To the OP:

Our dev. pedi spent hours evaluating him and wanted to see every diagnostic test ever done on DS by the school district. It was an intense month long process to be evaluated including about 4 hours one:one in his office. It sounds like your son does have some traits that are common in ASD (the scripting, lack of engagement with peers, lack of imaginative play are all traits my son posesses) but I'd want a better workup by a dev. pedi

spartybride3 · February 2014

As a school psychologist, we give an educational diagnosis of Autism for those that have an actual medical diagnosis and those that do not, but display Autistic behaviors at school. As far as IDEA is concerned, there is no separate disability category (medical vs. educational)...it is just Autism.

I would definitely recommend an evaluation through a developmental psych and also through your school. Even if the outside person says your child does not meet DSM criteria for Autism, the school can do an evaluation and still find your child eligible for services. The school may do this under an Autism label or possibly a Developmental Delay.

If he is 3 and qualifies for services through IDEA, the school will provide those supports at no cost to you. I understand the frustration with the medical diagnosis and insurance, but you will at least get support at school. You can always go to another evaluator and they may give you the diagnosis, which will help with the private therapy.

In terms of diagnostic tools, I would personally recommend the ADOS, ASRS (rating scale), and either the GADS or GARS. My district has moved more toward the ASRS instead of the GADS/GARS. I would also request a language assessment, particularly with pragmatic language. It sounds like the "evaluation" the person did is more of a cognitive screening rather than an Autism assessment. I'm not surprised that he said your son is typically developing because if he can do those tasks (blocks, colors, etc), then yes, his cognitive development is normal. We do the same types of things for cognitive/academic development at our EC screenings.

joshsmandy · February 2014

When we went through the process with my son his peds would tell me he is normal, he is a boy that is all, when clearly there was something wrong. He was not social, he would meltdown for no reason in the store, he would stimm, he would rock uncontrollably hitting his head in both directions and I would have to restrain him for fear of concussion. I was told by a school psychologist these were "learned behaviors" because he is intelligent. Once they dug deeper and began the psych eval, ados,and IQ tests they realized he needed to be diagnosed. Keep pushing them, they will eventually listen to you.

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