DD got diagnosed yesterday - long | Autism PDD

Just wanted to let you all know that my dd did get diagnosed by the ped. neuro yesterday with pdd-nos (high-functioning, mild). It didn't take him very long at all and I guess the only shocker was that she wasn't in the "gray zone" as much as I thought to the specialist. He could see it almost immediately, whereas I thought he'd have a hard time classifying her and order standarized testing and we would be left hanging for a few more months of doctor visits/testing. I couldn't have been more wrong - it was glaring/textbook to him.

It was a really good experience with the doctor. He picked up on things about her right away that I thought I'd have to fight to explain and he also noticed things that I never have. For example, he asked does she always rock like that? I have never in her life thought she "rocked" but there it was, it is just so slight my untrained eyes never saw it. He just seemed to really "get" her - I thought he'd be working off some checklist or something clinical and try to fit her into some sort of medical box, but he seemed to know and recognize her personal "quirks" without any input from me!! He asked me questions and got my input and information about early infant and toddler years but it was stemming from what he was observing and noticing himself about her behavior/interaction specifically. He was dead-on and then some with his assessments and observations.

Plus, he really took care to support me as well. He even told me very sweetly that this a result of biology not parenting. He said there is a lot about her that is "right" in her language and commuication skills (for what it's worth). He explained how the dx is not static and may change but that if it did he definitely sees her on the asperger's side or even more towards indistinguishable from NT to untrained eyes. Of course there are no guarantees, but there is much to be grateful for and hopeful about.

He really helped me understand how for my daughter, anxiety and "a flavoring" (as he called it which I loved) of OCD interact with her pdd, which really help me understand her better. He didn't say she HAD OCD or even that she will but that it is a component (along with the anxiety) and I hadn't really seen her behavior through those lenses before and now that I do, it all makes perfect sense to me. She doesn't have "irrational fears" she has "anxious" tendencies, and she doesn't have meltdowns over "nothing", she has meltdowns because the OCD tendency is driving her to need things a certain way for good reasons (to her)

This morning I had an occasion to really learn how much having this dxed and figure out helps. She woke up with an incredible case of diarrhea - it was EVERYWHERE, absolutely the worst I"ve seen (sorry if TMI). It was 5 in the morning and I needed to get her in the bath, there was this stuff everywhere in her bed and room and there were no clean pjs to put her back into. ALL these things are highly unusual obviously and she was very upset mostly with the bath and wanting her soiled pjs (or ANY) back on.

Now that I KNOW she's got pdd-nos I was able to just understand that this is highly out of her routine, there's probably some sensory stuff going on and she's doing what she can to cope and it has nothing to do with my parenting skills or her being unreasonable. I knew I just needed to do what I had to do (which was force her into the bath and clean her up), disinfect her room, get her dressed, etc. She screamed and cried and yelled and did stress echolalia as usual. But, I noticed all the anxiety about "why is she screaming?" and "why can't I control or get through to her?" and most especially "is this normal??" is just gone. The answer is no, it's NOT normal, but it's NORMAL FOR HER!

So, I think having this diagnosed is going to help everybody (me, dh, dd) cope better with all the same issues we were already coping with, if that makes sense. I mean, I already have a 3 year old who's petrified of public toilets and won't use them so is not technically potty trained but now I don't have to beat myself up about it or worry anymore. It's to be expected - it fits with her disorder.

Also, I really did get to see how nothing changed from when we walked in the door not knowing and when we walked out with the dx in terms of who dd is and how much I love her and our relationship to each other. We also feel like it was the best possible outcome given the situation. 1) we got a dx, we are no longer wondering, in limbo, no more diagnostic doctors or tests 2) it is the best possible dx in terms of functioning level, severity, etc.

All that said, of course, it just breaks my heart to think of her having a disorder of this magnitude and worry about her future which is so unknown. But it really is for every parent, there is no guarantee about anything, so while I'm going to allow myself to feel sad and devastated and heartbroken for her sometimes, I am not going to let this be the defining characteristic of her life. And I know how lucky I am that I MAY have that option because of her functioning level and her language skills.

I guess I have to admit that I also feel some vindication and validation for seeing this through to the end. There was a time when I was the only one who believed there was something wrong. It gives me some confidence that just maybe I can be a good advocate and mother to her after all - and like I might have a made a significant difference in her development. I hope so. But then again, maybe I waited too long because she is over 3 years old and we lost precious time. Who knows??? I guess it really doesn't matter because we have the dx now and all we can do is go forward.

Thank you all so much for helping me through this process and I guess I'm here to stay. I couldn't be in better company!

I am glad you got a diagnosis. Since it is a pdd-nos diagnosis on the high functioning end, those kids do tend to be able to function more in society than a child that is truly autistic, or so they say. Don't know, not at that point yet,

Tammy

I'm glad you got the DX's and that the Dr. was so helpful to you..... Your overall tone even seems better sally. *smiles* Good luck with the therapy and such that is the next step.

I agree with Zachie's mom, the tone of your post does seem much less stressed. I'm glad you got answers, and it sounds like you saw a good neuro, so that's really good.

gabu39072.6893055556

Sallys I am very happy that you got the affirmation you needed. I am waiting for mine still...I also am glad that it has made it easier for you to deal with the behaviour. I dont think you have lost precious time and remember, the DX might change like he said. Joe had so many fears and irrational behaviour at 3 and now at 4.5 they have all resolved (except one or two and even then they are so mild)

Good luck sweetie

Sally,
When my grandson was diagnosed last Sept. he was 4 1/2.
He was also diagnosed HF
With therapy he has come a long way already.
We are fortunate that our kids are verbal.
Our problem was to find the therapy that worked for us.
We took the ABA course, and hired a therapist.
It was a waste of time and money.
For most kids it is the best, but you need to try everything to come up with the skills that need to be developed.
We enrolled him in a social skills class three afternoons a week, and a pre-K two half days a week.
Our greatest help has been ST
We also do OT and neurofeedback.
We do not do bio-medical, as he has no digestive problems, other than the fact that he doesn't like food.
We made many mistakes along the way, and it took us until this January to really get it all to-gether.
I don't know where you are located, but in Ont. a HF label means you are shoved out the door with no support.
Your attitude is amazing, just like my daughter.
Good luck to you along the way.
bev

congrats on the dx. i am glad it went so well and fast for you. mine was about the same when my son was dx about a month ago with asd. it was not what i expected but things are moving on fast as he will start preschool special education in hte fall.

I am so glad to hear that you got a diagnosis! Also the Doc seems outstanding and that is a major plus!! Not that I am glad that your dd is Pdd-Nos but I am very glad to hear it is that particular diagnosis because I agree with Tammy about the statistics showing a better outcome for it. I'm also glad your not going anywhere....not that anyone would have expected you to leave the board room anyway if diagnosis was different..but glad just the same that you will still be around! Take care,

Karrie

I am so happy for you! As you said, what a relief it must be to have your own instincts confirmed, as well as to actually have a working diagnosis. It helps to be able to understand our kids a bit better when we know there's a reason behind their 'odd' behaviors. I'm very glad for you, too, that the doctor seems to think that your daughter has a lot of potential and that she will progress well.

Good for you, Mom, on following up with this -- your daughter is very lucky to have you looking out for her!!!

I'm so glad you got the dx finally. I feel the same way you do sally. I think once I find out something I will be able to better handle everything ds does. Right now I'm stuck wondering if he's just weird, is it just me, am I overreacting, etc. I am very glad you kept checking into this for the sake of your dd and yourself.

Amber