Testing...Help me think this through please...

[APToddlerMama]

So for all of you with kids with an ASD, I am wondering what you would do in the situation. My son is 22 months and we do not have a diagnosis. Possibilities include apraxia, ASD, SPD, etc. I finally called to make an appointment for further evaluation for him (ped and SLP telling me to "waiiiiiiiit" a few months back and now two months later it is more like "I wouldn't wait TOO long!!!") and the wait is now 6 months out. This place is recognized nationally which might be why the wait is so long. I could have him tested somewhere else probably within a month. He is going to be seeing a neurologist anyhow sometime soon, I hope. The referral is in for that and we are waiting.

Anyhow, the question is, would you wait the 6 months to have him tested knowing that he'll be seen by "experts" in the field, or would you have him tested right away and perhaps follow up with the other clinic whenever they have openings?

What am I losing by waiting? We are doing speech through the county twice a week though they are refusing to pick him up for OT (which is positively ridiculous with the number of sensory issues going on). He's ok PT-wise right now. I am hoping if we get an apraxia diagnosis we can do speech privately. We are GFCF, plus yeast, corn, soy, and all sorts of other things free. He's on Nystatin and we just started fish oil. His ped is running all sorts of testing for metabolic issues, celiac, vitamin deficiencies, etc. and will refer to GI specialist if needed after results come back.

I guess I just need to know what services would I be losing out on if we don't get an ASD diagnosis for 6 months? (assuming of course this is the diagnosis which I'm really not sure it will be)

Thanks Mamas!

[HarperRose]

Well, I don't really know what you'd be missing... My boy was 7 before his dx. I don't think 6 months would cause that much of an issue.

[KCMichigan]

A few things:

1. They may tell you 6 months, but that may change quickly. That is there 'latest estimate' so that if 5 mnths go by and you dont have an appointment, you are not calling them. By saying 6 months, they are being generous to make sure too many people do not get angry. You also can get on a 'call list'. We were told 6 months and got in in 1 month due to a cancellation. You can also call weekly and see if they have cancellations.

2. It sounds like you are getting therapies and are involved in early intervention- that is great! Make sure you get copies of their reports to take with you to the ASD clinic. Since he is getting services, I would wait it out until you can get in to the ASD clinic.

3. At age 3- he can get services through the schools. You want to have documentation for that or you may have to go through a whole new eval. Our school system has a free preschool ASD class that offers therapies.

4. Does the ASD clinic offer something you cant get anywhere else? ABA, sensory class, social classes, groups, parent support? That may be a reason to try to get involved- they will have better resources and contacts than most other places.

Good luck. One DD got evaled for ASD as a 2.5 yr old. She got a PDD_NOS dx. Now at 4.5 I doubt she woudl qualify, she is 'quirky' and has many sensory issues- but some have resolved as she has gotten older.

Hope they get you in sooner!!

[wytchywoman]

I'd take him to whoever you can get in to see first and then get a "second opinion" with the experts at 6 months. No reason why you can't have both is there?

[kme]

I don't think there is a "right" answer in this situation. We were in a similar one, except my son was much older (4.5). You are fortunate to be starting so many therapies so young. We were told my son did NOT have autism when he was very young and so he got speech therapy and went to ECSE (which helped enormously) but did not receive any autism-specific therapies.

I personally could not wait the 9 months we had to wait to get our appt at the nationally-known clinic so I took him to a local practice that specializes in ASDs and then got another opinion at the big clinic when the appt came up. If nothing else, it gave us another opinion. We had had a previous opinion from a doctor who was just awful and she dx ASD. So the local clinic was our 2nd opinion (ADHD/SPD) and the big clinic was our tie-breaker (ADHD/sensory seeker/language disorder). I think getting more than one opinion can be helpful - more than one set of eyes can give you more than one perspective.

Good luck!

[APToddlerMama]

Thank you all for the ideas. I am so incredibly sleep deprived I can barely think straight, so this really helps!

[Linda on the move]

Originally Posted by APToddlerMama

the wait is now 6 months out. This place is recognized nationally which might be why the wait is so long.

6 months isn't a long wait for this kind of thing.

Anyhow, the question is, would you wait the 6 months to have him tested knowing that he'll be seen by "experts" in the field, or would you have him tested right away and perhaps follow up with the other clinic whenever they have openings?

I would set up the appointment (or be put on the list, if that's how their office does it). You can always decide later to cancel. I wouldn't cancel unless I felt completely and totally satisfied that the best information possible and the best paper trail possible.

I guess I just need to know what services would I be losing out on if we don't get an ASD diagnosis for 6 months? (assuming of course this is the diagnosis which I'm really not sure it will be)

I think it's more important to get the best possible evaluation than to try to do something super fast. It is taking so long to get a solid Dx for my 13 year old that her regular doctor wrote her a dx for PDD today just to make things easier with the school. The only thing it matters for is for school.