Getting educational help, no matter WHAT the dx, is far more important than getting a dx, itself. For kids under 3, that means getting an evaluation thru EI. For kids 3 and over, it means having the school district perform a multidisciplinary evaluation. A diagnosis is different from an evaluation. A diagnosis is something medical that states the name of the exact disability. An evaluation is meant to test functioning level and has much less to do with the actual name of the disability than with the fact that the child is experiencing delays. And it's tested evidence of delays that will get your children help.
Hi everyone ~
About 8-12 months ago I was a frequent lurker, but never posted much. Now we're back again, but this time for my 18 month old DD, instead of our older son. I was never able to get an ASD dx for my son, and so far it looks like not for my DD either. Here is our recap.....I guess I'd like to know, am I just crazy? Why is it I can't get any of the professionals to see the concerns that I see? Everyone talks so much about the importance of early intervention, but why is it so hard to get? Sorry this will be sort of long. I'm mainly writing about my DD, but am including some history about my son as I think his history is important to her development.
I had concerns about DS (now 3.5) starting at about 18 months, mainly due to late-talking, but also things like lining up toys, poor imitiation skills, head banging etc....At 29 months he was eval'd by a developmental pedi, and EI. The dx he got was Expressive Lang delay. At the suggestion of the folks on this board, I talked with our local Autism Society and asked for some recommended evaluators for a second opinion.....one of recommendations was for a team of doctors at a PDD clinic where they only see one a child a day, and this is where we took ds for his "big" eval. They said DS was not ASD, and they didn't even think he was quirky. The only unusual finding is that they said he was very advanced academically...scoring in the 99 percentile on the academics testing, they said he could read words. They also said if I continued the be concerned about ASD in my son, that perhaps I shold find "someone to talk to" (read: therapist.) Currently DS seems fine and happy, attends regular preschool and has friends, playdates and enjoys playing with other random kids he meets along the way, although he does not seem to "read" people very well. His speech now seems fine and he has outgrown the behaviors that concerned me in the past. I'm not sure if he is developmentally "okay" now, or if new issues will just present themselves later.
Now on to my DD (18 months.) Just eval'd by EI with big time delays. Her social, cognitive, adaptive and emotional scores were all in the 9-12 month range. She qualified for EI due to the delay, with the evaluator adding "Atypical development and/or behavior. Decreased attention to activities with limited imitation and functional play." All that and she qualified for a whopping 45 min/week of therapy. To add another wrinkle to things, we got in to the developmental pedi (got lucky with a cancellation) and the dx he gave her the same as my son, expressive lang delay...they were not even concerned enough to feel she needs a re-eval in 6 months or so. My dd does not wave bye-bye, has no words (not even mama or dada), does not point to show things etc....She needs help, and I am asking (make that begging) to get it for her. What else can I do? Please someone reassure me here....with the issues I listed, I SHOULD be concerned, right?
Anyone else have a really hard time getting a dx, but with perserverance finally get one? And along with the dx, did your child finally get the help he/she needed?
On the flip side, anyone have a child showing signs of ASD but the issue really was "just" a language delay/disorder?
Thanks for reading if you've made it this far. Take care everyone.
Yes, I would probably seek out additional therapy, too. You need to figure out what's possible, though. Not very many school districts are going to offer you lots and lots of EI in the form of ABA (though some do). You could set up a home program if you can afford one for the youngest, which might be what you'd have to do anyways (rather than fight with the district). What state are you in?
Fred, we are in Virginia. Our DD is just in EI right now, and in my district, all they offer is floortime-style therapies. However, I think my DD could really improve with ABA therapy for her basics (like learning to wave bye-bye or attending skills.) Her imitation skills are really poor, so just showing her how to do something is not helping.
I understand that most EI programs will not offer ABA, but with a dx I thought I might have a better case if I decide to really push for them to provide/pay for it. At this point, I have no idea how to even go about challenging the EI folks.
We may try to set up some sort of home program if we can scrape up the $$$$ and the need continues.
Thank you for all the replies and input.
Thanks Evie and Fred, very speedy responses.
Fred, the actual dx is not important to me, but the services are. I feel like having a dx would give me more leverage in trying to obtain better therapies. 45 minutes a week is not enough for a child who is showing 50% delays pretty much across the board. I feel like without a dx it is going to be impossible to get more help.
I'm so sorry you're having such trouble getting people to take you seriously. (Implying you need a therapist?! That's just...well, I don't have polite words for that)
Hopefully, someone else here can give you more solid feedback, experiences or even some ideas about how to proceed.
Good luck!
I would ask, why is the diagnosis important? As long as the defecits are addressed, then I wouldn't concern myself with a medical diagnosis at this point - especially with the year an a half old - that's pretty young to be getting diagnosed anyways. What would be different with a medical diagnosis? Would it get you additional services through the school system that you cannot receieve with the current placement? I think that most school systems base their therapies on data from assessments regardless of the actual medical diagnosis of a child. In any case, you are getting early intervention, so you're doing the right thing.