We got a diagnosis today

chardonnay24 · February 2014

Hi all, I've posted a few times over the years with some questions, but today my 3 year old son received an educational diagnosis of ASD from the school district. Our next step is seeking a medical diagnosis and seeing a geneticist so that we can try to get our insurance to cover private therapy. I'm handling it much better than I expected, but I've had the last month (going through the eval process) to work out my feelings, and it wasn't a huge shock when we received the news. The only concerns that I have now are that #2 will end up with ASD as well or that it'll be a fight to get a medical diagnosis for #1 since he is typical in many ways. The school's eval team even said that it was difficult for them to make a decision because while he has several indicators of ASD, he also is typically functioning in many ways. The only reason they ultimately gave us a diagnosis is because of his interaction (or lack thereof) with peers and seeming lack of understanding of how to behave in appropriate social settings, which a medical team will not be able to see in the few hours that they spend with him.

Right now, he's in a typical preschool twice a week, working with an ECE teacher for 45 minutes each week, with monthly consults from an OT and SLP. He is currently fairly successful in school, so I'm not sure that I want to pull him out but will consider if he doesn't do well when he moves up to the 3's class in the fall.

Thanks for all the help you ladies have given us as we've come this far, and I'm sure I will be posting more often now. :-)

joshsmandy · February 2014

I just wanted to wish you luck.

bliss611 · February 2014

I could have wrote this

We seem to have a lot in common re: situation.

Good luck with everything!

kcisthebombdotcom · February 2014

My dd is similar--multiple indicators for autism but behaves typically in many ways too.

typeset · February 2014

Wishing you the very best going forward, with both of your kids.

lite-bright · February 2014

Good luck going forward. I just wanted to say, my DD1 has ASD and my DD2 does not -- we actually got DD1's dx on DD2's first birthday.

My DD1 doesn't fit a lot of the typical behaviors for ASD, either. We are almost three years out from dx and she is thriving in mainstream kindergarten with minimal supports.

It's a lot to take in, but there is good support and knowledge in this forum. I also found Making Sense of Autism Spectrum Disorders by Dr. James Coplan to be really helpful in those first few weeks and months, in giving good info on therapy options and helping us figure out where we should focus our efforts.

A2TP · February 2014

My DS1 is also one who "barely qualifies" for an educational diagnosis of ASD. We were also worried that he would not get a medical diagnosis (and with it access to additional therapies) but were fortunate that he did indeed get the medical diagnosis. His psych also discussed that he is right on the bubble but ASD dx opens more doors and not having the dx doesn't make the problems magically go away (I don't think she realized at first she was preaching to the choir). To be honest I think DS1 may be more of an "autistic cousin", but I think so is my DH and he definitely could have used a few extra supports based on the stories he tells me about his elementary school experiences.

The medical evaluation should include a lot of parent questionnaires which will help pull out/identify a lot of the peer-peer and social interaction issues. I was also surprised at some of the subtle things they picked up in their time with him too (like something with another kid in the waiting room when they called us back, etc). Good luck.

DS1 was diagnosed when our twins were 6 months old. So I also know the feeling of waiting for the other shoe to drop with younger siblings.

chardonnay24 · February 2014

Thanks everyone.

Auntie, the school district is offering us very limited services. The most they could offer us is the one on one support in preschool once a week and monthly consults with an OT and SLP. We will not have any support during the summer and they provide very limited support at home (they've offered me visual aids and social stories to use at home). They told us it was due to funding. It's a difficult transition for us, mostly me, because he had been seeing an OT and SLP weekly in our home since 18 months. He already has an IEP that was put in place at his 3rd birthday 2 weeks ago.

That is the primary reason that I'd like a medical diagnosis. We need support at home (mostly dealing with aggression) that I cannot get from the school because of their very limited resources. He just got off the waiting list for OT and is still on the waiting list for speech at a local children's hospital. We pay $282/session. Right now he goes to OT every 2 weeks and he will need speech once a week. Our insurance only covers PT, OT, and speech for rehabilitation from an illness or injury, and they have told me that they will not cover therapy for developmental delays. They will cover therapy under "mental health" if he has a diagnosis. So basically, getting a medical diagnosis will save us close to $2k/month in therapy. I also really think he'd benefit from ABA for the aggression, but I've been quoted $5k/month for 11 hours a week of ABA, and that's not really feasible for us.

He may be eligible for the sped preschool but they generally save spots for children that cannot function at all in typical preschool. He does fine in the 2's right now. His aggression is typically a sensory reaction (when kids are crowding, when he's in the center at circle time, when someone gets too close) so the teachers have been able to make accommodations and he hasn't had any issues since December. He also has trouble with listening because he becomes really focused on an activity, so they have also been able to deal with that by giving him 1 minute warnings or using touch/a bell/some other way of getting his attention. There were some safety concerns at the beginning of the year, but they have put things in place for those as well. His class is 1.5 hours long and they don't spend more than 10-15 minutes on any one activity, so he does well with the pace and length of the class. I'm worried that with the longer, more relaxed nature of the 3's class, he'll get bored and have more time to find trouble. My plan is to keep him in his current school unless we get to the point that he becomes unsuccessful, and then we will go from there. The baby is due the first week of school, and I don't want his world to be rocked too much, because a new school, new therapists and teachers, and a new baby at home will be a lot for him to handle.

Assembly_Reqd · February 2014

Welcome! Good luck on your next steps.

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