Tuesday, April 20, 2010

Does he, or doesn't he???

Two years ago I took Andy to a neurologist. I had concerns about him...knew something wasn't "right". I feared he may have Asperger Syndrome. I had been told by a few clinicians that I should have him evaluated because they had the same concerns.

In the matter of 5 seconds, the neurologist told me no way. He said my child instead had ADHD and Oppositional Defiant Disorder. Now, those of you who know Andy know there is no way in hell that he has Oppositional Defiant Disorder. He is the sweetest kid, doesn't cause trouble, doesn't get in trouble in school. In addition, Andy displays no ADHD characteristics other than the fact that he's wiggly, which I know is from his SPD. I tried explaining this to the neurologist but he wouldn't listen. I think he thought I was one of "those" moms who was looking for something to label my kid with.

The neurologist also went so far as to tell me that SPD is not real, it's a manufactured diagnosis that holds no weight. I wanted to punch him in the face right then and there. Anyone with an SPD kiddo knows that isn't the case. Anyone who has watched a wiggly kid get into a net swing and calm down in about 2 minutes knows it's real.

We left that appointment with me feeling angry. Angry that the neurologist so quickly dismissed my concerns, angry that he didn't listen, angry that he so misunderstood Andy and I that he thought my child deserved the ODD label.

Fast forward 2 years and here we are again. Andy's SPD symptoms are getting worse, he's been very out of sync the last few weeks. His emotions are off the charts, the meltdowns are more frequent.

Andy had his seven year check up at his pediatrician's office yesterday, and she told me she wants me to have him reevaluated by the neurologist. She thinks he may qualify for the Asperger diagnosis at this point.

Now I'm angry. I'm upset. I'm scared. I went from being told he probably had it by a therapist 2 years ago, doing research and convincing myself that it was probably true, to being told he didn't by the neurologist. Now for 2 years I've been telling people he's as close as he could be to the spectrum without actually being on it. Then I'm told he probably does have it and I should have him reevaluated.

I'm afraid that if he is diagnosed at this point, we've lost 2 years that we could have been working on it. Would it have made a difference? I don't know. He's been receiving treatment for his SPD the whole time...he's been in OT. But would he be in a different place now if he had received the correct diagnosis 2 years ago?

So, which is it? Does he, or doesn't he? I just want to know one way or the other so we can move on.


  1. I don't have any answers for you, but have you been to a devlopmental pedatrician? That is where I got help, my regular pedatrician saw my concerns, and so she then sent me to the developmental pedatrician.--
    humm... just my two cents.. :)

  2. How frustrating! All I can say is: don't look back. There's nothing about the past you can change. Instead see the here and now. If you find out he does have it think not about the "what ifs" and "could haves" think about the "what is the best thing I can do now?"

    I know this isn't much help and my heart goes out to you. I would be beyond annoyed myself. Good luck!! I hope that Andy gets everything he needs to be his best possible self!! (And with a mom like you how could he not!)

  3. I hope you can find some answers. We had a similar experience with our son at age 3. Developmental psychologist/ developmental pediatrician gave him a anxiety diagnosis and said SPD doesn't exist and medication was the way to go. Needless to say we never went back there. Our OT warned us that would happen, so it wasn't a huge surprise.

  4. I'm so sorry sweetie! We have been in the same boat. Hayden has Down Syndrome and SPD and we're (ok, hubby & I, his teachers & therapists) are about 90% sure he's on the spectrum too. But the doctor's seem to be afraid of adding another label. I've gotten to the point of just saying 'ok fine, whatever'. Hayden goes to a specialized day school for special needs kids (because he can't function in a regular public school) and the school knows so they give him the therapy he needs regardless of what the doctors say.

    But I'll keep my fingers crossed for you & keep praying that you get some answers. It's tough when they don't want to listen & it seems like you're the only one who's willing to fight for your kid.

  5. This is EXACTLY how I feel right now with my son. While having a 'correct' diagnosis won't solve all of our problems, I'd just like to know which disorder(s) he has so we can get him the right therapies and yes, move forward!!!

    Since we've been hearing so many different things from various doctors/therapists, I've been researching lately into the whole 'gray area' phenomenon. Have you already read "The Mislabeled Child" and watched "Autistic-Like: Graham's Story"? I just ordered them this week and have heard good things about them. While the examples given may not be exactly like our kids, the themes are important: diagnoses are not clear cut and trust your parental instincts.

    Good luck. Ultimately, we're the ones that know our children the best and what's best for them...so we gotta keep fighting for what they need!

  6. First let me say from a developmental specialist standpoint that there are no "extra" things you could have been doing for him with an asperger's diagnosis. You're already doing what would be recommended for him. The sensory is the largest piece. Any other therapies usually come around age 6 or 7 so you're right on track:)

    The next thing I would say is that you should really look into seeing a Developmental Pediatrician instead of a neurologist. They tend to have a better take on Autism in general. The neurologists really do NOT take sensory into account and try to come up with some of the craziest things because they can't "explain" the behaviors.

    As a mom I wish you the best. I have struggled myself with whether or not to have my son evaluated. I don't think it would change anything that I'm doing but it may change the services that he receives at school and may keep him from being labeled as the "bad" kid. I don't want to label him if I don't have too. He's my son and I will do whatever for him.

    Things will work out for your son too. In the mean time I'm sending big hugs your way:)

  7. What's the difference between a developmental pediatrician and a regular one? Is the difference vast enough that I should think about it for my son who's not on the Spectrum and "only" has SPD?