New & a Question re: ASD testing

[BeekersSneakers]

Hi there,

Mothering.com seems to come up consistently in my google searches when I am researching supplements and treatments for my son, who will be two in August. I have read through lots of your threads and generally love the discussions that go on here, so I thought I'd join. I have a question but I guess I need to give a bit more background first:

I have felt my son was "different" from birth - he rarely made eye contact and didn't smile in response to my smiles. Around a year old, he stopped responding to his name, so I pushed hard for an EI eval (pediatrician was totally against it - we have since changed docs!). They diagnosed him with speech and social delays and we have been getting therapy since he was 15 months old. We love our therapists and they have made a HUGE difference in my son's life as well as mine - awesome support.

We also started working with a naturopathic physician who specializes in children with allergies/ADHD/ASD. We knew our son was allergic to egg and sesame, but he still had lots of bowel issues and was sick constantly. We saw HUGE changes after removing allergens from his diet and starting him on various supplements. The biggest change is that now he almost never gets sick and his bowel issues are completely resolved. I am so grateful for that because he is just so much happier.

He's also extremely verbal now - hundreds of words, making 3-4 word sentences, etc. He still makes infrequent eye contact and prefers to play on his own, but I don't see any real "problems" anymore. I just have worries.

Here is my main question:

I am so torn on getting him officially evaluated for ASD. When we first had the EI eval, they strongly suggested it, and at the time I agreed. There was a 6 month waitlist to be eval'd though and so much changed in that time, but I was encouraged to keep the intake appt so I did.

We took him to our local Children's Hospital Autism clinic for an intake interview and it was a HORRIBLE experience. The nurse practitioner had no info on him before we got there, but seemed to have him diagnosed before even setting eyes on him. She would question me and question me until she got the answer she wanted (for instance, she asked over and over about obsessive/repetitive behaviors, which he has none of, and when I finally "admitted" that he does enjoy looking at the wheels on his toy cars, she triumphantly wrote that down and acted like she had won some sort of prize for "discovering" this issue. He plays with his cars in an appropriate/normal way - who cares if he also likes to see the wheels move?!). I had tons of other issues with the interview (including that when I mentioned how much progress he'd made with speech, she told me "well he can still regress."), but these were just some major ones.

Needless to say, we will not bring him back to that particular clinic for the formal eval. However, this situation made me wonder if it's worth getting him an ASD eval at ALL at this point. Sometimes I worry that people are trying to diagnose him when there's no real need. We're already getting services and I don't want him labeled unnecessarily....do any of you have experience with this or advice? I don't want him to miss out on more services if that's what he needs, but I also don't want him mis-diagnosed by overzealous practitioners. Any advice would be much-appreciated as I am still very new to this and I don't have much support in real life.

Thank you!!!

[QueenOfTheMeadow]

It's so nice to see a new face on MDC and in the SNP forum!! It sounds like you had an awful experience with that nurse! UGH!! It sounds like you've got some great support in his therapists though! So what are their thoughts on getting him evaluated?

[BeekersSneakers]

Aw, thanks for the welcome!

As for his therapists, they are actively opposed to ABA or OT (he currently gets speech therapy and has a special education teacher to help him with socialization, and he's on a WL for their preschool). They told me they would tell me if they thought he needed more than he's getting, but he is progressing beautifully and they don't want to overload him. I do trust them!

They initially wanted us to have the ASD eval, because they said it wouldn't hurt. He has what the special education teacher calls "pink flags" - a lot of his "issues" are so borderline and he is learning and changing so much. But they were for the eval because then either we'd have a diagnosis or we'd know he wasn't on the spectrum. But, once I told them about the intake interview, they were horrified and now say "well it's up to you whatever you want to do." There are two great Autism centers in the area so we could just go to the other one, but like I said, now I'm just sort of scared off...

Maybe I just need to relax and not worrying about changing a system that is working for us. I'm just scared that without a diagnosis we'll lose services when he turns 3 and he'll regress....but we have over a year before that happens and I guess anything could happen in that amount of time! 

[Fay]

Welcome!

What about a developmental psychologist not affiliated with the autism centers?  One thing to ask about before the appointment is which diagnostic protocol will be used.  The ADIR/ADOS diagnostic method uses specific wording to draw out a response without badgering like you describe.  There are some benefits to getting a clear medical diagnosis, but those benefits may be diminished since your child has already responded so well to therapy.  With my DS1, the ADIR/ADOS was very helpful in eliminating other possible conditions -- his symptoms were confusing, and this method narrowed down the possibilities quickly and accurately.

Have you considered doing play therapy at home?  You don't need a medical diagnosis for that, and it is highly effective for the symptoms you describe.  Here's a blog article that explains how to get started.  Play therapy is attachment-based, and easy to integrate into everyday family activities once you understand the basic principles and your unique goals.

[BeekersSneakers]

Thank you Fay! I'd never thought of going to a developmental psych and I didn't know much about the different diagnostic tools. I am going to look into this further - that is so helpful! I also love the look of the play therapy you linked to. It is very similar to what we do with his therapists at home, but I am motivated now to do more on my own with him too. We have a newborn so it can be a little tough to find the time to do uninterrupted play sessions with him alone, but it does seem to make a big difference for him so it is worth it.

Thank you so much for your input!

[Kristine233]

Whether to get a diagnosis or not would heavily depend on what type of therapies you are looking at and if you feel he'll need help once in school. At school age its hard to get help through the school districts if you don't have some type of diagnosis. Unfortunately they really try not to diagnose children until they are school age unless its really obvious.

We don't do anything beyond OT (although he doesn't need it anymore) and Speech, so I can't give you advice on the other therapies, sorry. There are a lot of mamas here that can help though and have a lot of experience in those areas.

Welcome to the MDC SNP board!

[EarthRootsStarSoul]

It sounds like he is already getting what he needs for now, so it's not urgent to get him diagnosed.  By the time he starts school though, he will probably need a formal diagnosis in order to access services through the school.  It seems OK to wait a couple years as long as he gets to stay in ST and goes to preschool/ daycare for socialization.