questions on diagnosis process

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I have a 4 year old son whose official label right now is "developmentally delayed" and is receiving services through our school district. We've suspected he is on the autism spectrum since 2.5 when his primary care doctor suggested it. He saw a developmental pediatrician at 3 but the DP's opinion was more of a wait and see since my son is verbal. Since the developmental delays (social/emotional, adaptive and gross motor) were enough for an IEP and special education preschool we did not worry about pursuing an official medical diagnosis further.

My son turned 4 in March and since then he has experiencing what our school district is calling a rapid and alarming regression with his social and emotional behavior. We took him back to the developmental pediatrician on the request of our school district. The developmental pediatrician who doesn't really know my child having only seen him twice said if the school feels my son has autism then they can just change the words on his IEP from developmentally delayed to autism without any medical input. The school district claims other wise. His own feeling is that my son is most likely not on the spectrum or he is just barely. But since my husband and I, his child care provider and the school district feel other wise he sent us home with three copies of the Gilliam Autism Rating Scale (GAR-3) based on DSM 5 criteria for ASD for us, daycare and the school to fill out.

I do not know how the scoring process works but when my husband and I started writing down answers on scratch paper on our break at work (we didn't want to write on the official form until we have time to really observe our son this weekend) we had a total of 88 points across all categories. I tried to search online but only found GAR-2 information and things primarily based on DSM 4. I still see some parents in support groups who are getting a diagnosis of pdd-nos right now which I thought was no longer used so it is all very confusing.

Any clarity on this would be very helpful. Thank you.

Are you in the US? I don't have any info on the GAR-3, although I have seen the Gilliam scale mentioned in Parenting Your Asperger Child by Alan Sohn. The "gold standard" for diagnosis is supposed to be the ADOS (autism diagnostic observation schedule), so you might ask about that if the GAR-3 doesn't place him in the autism range. Not sure why he isn't using it -- maybe he isn't certified for administering it, maybe it's used more by developmental psychologists? It is a 2 hour test, so maybe he's saving you (or your insurance) money by using a rating scale instead.

Our school district administered the ADOS, which I now understand is not the norm. I am still confused about what the school district is obligated to do. I do believe that they are legally required to give an educational diagnosis when appropriate as well as to do some form of testing, even if it is not gold standard testing.

Many folks opt for private testing, but I do not think the school can require it.

Yes I am in the US. I am not sure if he uses the ADOS at all. The one place I know locally that told me they use it does not take my insurance. The doctor's explanation on the rating scale was that assessment of my son by the people most familiar with him is the most critical part of the diagnostic process. Everything as far as medical diagnosis vs educational diagnosis is a bit unclear to me right now. I have a meeting with his teacher later this month and am hoping we can have further evaluation done with the school. My huge concern right now is I have a 4 year old who is struggling with anxiety about going to school and social behavior once he gets there and his teacher keeps saying things about how "high functioning" he is and how at least he's "verbal and toilet trained" and that he will "just improve" once he is in a integrated class in the fall. They also told me I couldn't let his daycare let him bring a comfort object to school since he needed to learn to participate at school without it so I feel like they expect more than he is capable of just because he is at a higher verbal level then some of the other children in the high needs contained special ed class he is in.

I would recommend finding a pit-bull advocate to help you fight for the right placement and services for him...

ADOS is the gold standard, but most schools don't use it. We would like DS to take it, but our insurance doesn't cover autism testing. Ridiculous.

An educational diagnosis just means the school gets to decide which eligibility box to tick off on his IEP (deaf, blind, autism, specific learning diability, developmental delay, intellectual disability, etc.). They can do whatever they want (or don't want) as far as testing -- they just need to be able to defend it in case you end up taking them to due process because you are disputing something in the IEP. However, if you have gotten a medical diagnosis of autism, they do have to take that into consideration, and it would be a lot harder for them to defend in court not checking the autism box.

I seem to recall one school DS attended even called the category "autistic-like behaviors" rather than "autism".

It sounds like you need to tell the doctor that you need the label on his report in order to get the services your son needs from the school.