Just got PDD-NOS diagnosis at 4.5 years -- too late for behavioral therapy?

[Anonymous]

Three weeks ago, we received a diagnosis of PDD-NOS for our wonderful 4.5 year old son. His Dad and I feel absolutely terrible that it has taken this long for us to catch on that his problems were greater than a speech delay. But now that we have the diagnosis, we are taking him to two different, well-respect autism clinics in our area for evaluation for services. One clinic specializes in the Lovaas method (ABA), the other follows the Early Denver Childhood model (I think that's the right term, anyway). Both clinics have intake coordinators who have warned us that children usually begin with at least 20 hours per week of behavioral therapy, then scale down slowly from there as progress indicates. Our son has very good self-care skills for a special needs child his age: he is toilet trained, can dress himself, eat normally with a fork and spoon, etc. He also has a fair bit of language though his overall expression isn't very good. As one of our friends said, he is a child that you wouldn't notice at first as being any different from the other little ones in his class, just a bit quiter/shyer maybe. It's only after watching him for a while that you would realize something is not quite right.

Basically, I am wondering if all of this -- age and current level of skills -- mean that we are just too late for behavioral therapy to make a real difference to our boy. We are happy, even eager, to do it; we've already agreed unanimously that I will leave my job and stay home with DS to coordinate school, therapy, care, etc. And thank God, insurance will cover everything (or very close to it). But I am wondering if the fact that DS already has some language and self-care skills mean that he is already too 'hard-wired' to benefit from behavioral therapy, if we have already missed his window for it to do the most good. Obviously, we'll be asking his evaluators this question as well, but I was hoping the Moms on this board might have some preliminary feedback for us.

One other question, too: is 20 hours of behavioral therapy, 1 hour each of Speech and OT therapy, and 15 hours per week of an inclusive 4K class (that includes weekly speech and OT) too much for a 4.5 year old? Part of me feels absurd even typing the question -- how can 37 hours per week of school and therapy NOT be way more than is good for a child that age? -- but that is, I swear, what the math is adding up to if we were to do all that is being recommended. Do children actually keep schedules like this and benefit from them? How will we know if it is too much for our child, or even counter-productive?

[Anonymous]

I don't think it is ever too late, plus 4.5 years old is still quite little and there's so much that kids can advance. If filling your child's schedule it too much, you can always scale back. There may be certain therapies to concentrate on first and later the others. I would discuss all these things with your ped or have one therapist/doc who oversees all the therapies/initiatives you are pursuing who you trust and who is coordinating care and so that you are not going in so many directions. This is also a good age to have many therapies because they do not conflict with schoolwork very much so the sooner the better. Also, the more intense I believe the more they get out of it, but you know your child best. Lots of luck and good wishes to you. You are not alone.

[Anonymous]

No, it's not too late, OP. You sound very guilty in your post...please don't be. With special needs kids, you do what you can when you can. And you will constantly learn of new therapies and therapists and wish you had heard of them last year. You can't give in to guilt.

Therapy will still be of great importance and benefit to your child. Hang in there.

[Anonymous]

Not too late by any means. Do you have a good developmental pediatrician to help manage and guide his therapies? We found that was so so helpful because its very easy to fill up your plate with everything that is out there but having expert advice allowed us to focus on what our DS really needed.

[Anonymous]

First, there's no magic window that shuts on learning. That's what people selling early childhood services try to sell parents on to get them to throw money at everything under the sun.

Second, what are your son's specific needs for ABA?

Third, who gave you a PDD-NOS Dx? Someone truly reputable? PDD-NOS is going away next year; will your child still qualify under the new guidelines, or will it be social communication disorder? Or something else? These are all things to ask yourself before you quit your job and plunge your child into that level of therapy.