My son is 4 1/2 and we've known about his sensory issues for the last couple of years and in the last year have started to suspect Asperger Syndrome/ASD.
I am just feeling so overwhelmed about where to start and what to do. I'm very nervous about labeling and any harm that might cause.
He starts Kindergarten in a little over a year. In my town they're all full-time, I have no clue how he's going to cope with that. I know a lot of development can happen in a year, but he does seem different than the other kids his age. He's in preschool 3 mornings/week but he goes to a very low structure "school" because it's the only one that allows a child who still has potty accidents. (I've noticed it tends to attract kids similar to him, probably for that reason)
Here's what we've done so far:
---At 2.5yo I took him to be evaluated at this early intervention place
because I felt like his speech was delayed compared to kids his age and because of some sensory things. He qualified for services and someone came to our house once a month to work with him. They pretty much just focused on fine motor skills and after a few months we ended up stopping because it just seems kind of pointless and wasn't helping with what I had taken him there for.
---At 3.5yo His preschool and an extended family member shared concerns of sensory processing disorder and asperger's. I took my son to a private OT. She agreed that he would benefit from a full evaluation. She doesn't bill insurance and it was more $ than we could afford at the time, we hesitated and kind of put it off....partly out of fear/nervousness/avoidance on our part and then just life busy-ness.
---At 4yo we had a well child check with his pediatrician. She signed him up to be evaluated by an OT and speech therapist at the hospital
...as well as a clinic that diagnoses children for ASD and a bunch of other things
. Our experience with the hospital therapists has just seemed rushed/busy/non-effective/not very helpful/a waste of time. ....especially compared to the experience shared by someone I spoke with in my town, that went the private OT and child psychologist route.
Now I don't know what to do. I don't know if I should go ahead with the meeting that is attempting to get a diagnosis or if I should avoid labeling right now and focus on therapies. (OT and psychologist) The group that is doing the diagnosing is through the hospital and based on my experience with the hospital therapists I'm just nervous that we're going to get a big fat scary label and a bunch of non-effective help.
Are private therapists generally better than the hospital ones?
Say he does have high functioning ASD....what if a person just focused on therapies to help with symptoms and bypassed the labeling? We suspect that my husband also has Aspergers and he went his whole life without a label. He's successful as an adult and says that he probably would have just benefited from some help with a few things, but is glad that he was never formally diagnoses. We're just nervous that everyone, including himself, is going to view/treat him differently with a label, and that it's maybe not necessary.
Any good books I should read? (or ones to avoid?) I scoured Amazon and put about 10 or so on my wishlist that looked like they were helpful for parents.
I'd love to hear any and all advice and thoughts. I have no one to talk to in real life about this. All of my friends seem to have these super "easy" kids and have no idea what I'm talking about. Ok, btdt moms....let me have it.
Thank you so much. Feeling very lost at the moment.
I didn't list symptoms/specific issues because I feel like I already wrote enough, but if that would be helpful for advice giving, please let me know.