ASD eval Tuesday

nfrtny

I'll try to give a brief background for my 2.5 year old DS... He had 7 words by 18 months and then regressed, he didn't say another word until 24 months. He also stopped making eye contact, stopped pointing to body parts he knew previously, had obsessive behaviors, spun in circles, flapped his hands... And more I'm sure that I just can't remember right now. He's been in EI since 23 months, and has had private ST and OT since September. He's got about 130 words right now, but mostly labels things. He saw a dev pedi on November 26th that said she wanted him evaluated for autism, and a crap ton of blood work done and an EEG. I was NOT expected to start the evaluation process so quickly. They told me the first part he will see the psychologist and the neurologist, and the second part will be speech and language and behavioral. I've filled out a whole bunch of forms to turn in, Vineland, SCQ, a behavioral checklist, and some other papers for the neuro part. He has some staring spells which is why the dev pedi wanted him evaluated with the neuro instead of her. I'm so, so nervous. I spent quite 6+ months convinced he was autistic, but then he came out of his regression. Now I don't know what to think. I went into the appointment with the dev pedi kind of expecting her to just say he has a speech delay and sensory issues, but otherwise fine. It was like a punch to the gut when she turned to us and said DS did not interact with us as much as she would expect a typical child his age to. Why does that hurt so much, when I already KNOW that? So, I'm imagining this evaluation to be similar to speech therapy, and if that's the case he will probably do wonderfully. I'm mostly wondering what the behavioral part of the evaluation will be like. His OT suggested a behavioral evaluation which is why we saw the dev pedi, because he just has no interest in following any direction. It's taken 3 months for him to accept the OT directing him onto the swing, but he still resists most other activities/direction from her. The swing has just become routine for him now, so he knows walking into the gym that's what he will be doing. But that doesn't translate into other activities, like tunnels. My husband asked me the other night 'what's worse, if he gets diagnosed with ASD or if he doesn't?' what a loaded question. I'm sure you guys can understand that.. I hope at least, otherwise we are terrible people! I don't WANT my little guy to be autistic.. But I want him to smile at me, and to laugh with me, and look me in the eyes more often, and enjoy bath time, and be able to interact with his peers, and I know that it probably isn't 'just going to happen' one day without intervention.

nfrtny

Sorry for the format, I'm on my iPad!

Junebug060609

No advice, just a hug from someone in pretty much the same shoes.

I have a two year old boy as well, who has a follow up eval next month where he may or may not get a dx. Like you, the dx is secondary to the little daily life stuff. I miss the connection so badly sometimes.

mommy0411

((Hugs)) I definitely understand what you mean, I have been there! My son was diagnosed with ASD at 21 months and he is now almost 32 months. He also had a regression at 15 months and it has taken over a year for him to regain some of what he lost. He is talking now after 6 months of intensive speech therapy (10 hours a week) and has about 75 words. The therapies help so much and for us, a diagnosis has greatly helped us access the insurance coverage to cover the therapy. I will admit when we took him for a second opinion and further testing at our local children's hospital, part of me was hoping the doctor would tell me he didn't have autism, but that's just not true. The day my son got his diagnosis was really difficult and I cried for a week after. But it was also nice to know that what was going on with him was real and we had a plan to start helping him. He is about to start ABA and his doctors and therapists are expecting him to mainstream with an aid and pull outs for therapy by kindergarten. A year ago I would have never have believed that would be possible! I hope the evaluation goes well and you get answers! If you have questions please don't hesitate to ask and you are welcome to Pm me!