I have a question for all of you who have a dx. Did you start out with a dx of Autism/AS/PDD or did it come over time? I read everyone's posts, and you are all getting to the bottom of your kids needs so quickly...I'm feeling like a heel because my son is 8 1/2 and we're just getting to this now...not like we haven't been trying.
Our first dx came at age 2y/3mo - I complained to our doc for over a year that something was 'off'...he wasn't talking...odd behavior...she finally referred for hearing, and he couldn't hear out of his right ear. Well he got tubes put in, then was referred for speech eval, found "verbal apraxia" at age 2 1/2, then referred for OT eval at 3 yrs., found "Sensory Integration Dysfunction"...Did I just have crappy doctors (sorry) ? He also had CVS for 6 years undiagnosed, and so it's not until that was figured out that we began concentrating on the other issues that still don't seem to be helped by the ST and OT all these years later.
I'm just curious if it was obvious to your doctors from the get-go.....are we just chasing a white rabbit over here? (CARS/GARS show mild-severe Autism, adaptive behavior scales are not looking good, IQ is all over the place--not like it can be trusted a whole lot...he's a "spellamatician" but can't understand what he reads or add basic facts! Also has severe speech delays, re-eval on Friday)
I'm so frustrated...I hate having let him down all this time....but I can't tell if it's me or the moron docs that did it.
Thank you for any input you have...
Lesley
Hi Lesley,
I can totally relate to how you feel. I have an 8 year old son quinn who was diagnosed with PDD-NOS with autistic features at age 4 years 10 months. Quinn was then re-evaluated again just last year and his diagnosis had not changed from 2 years earlier. However over the past couple of months his behavior at school has gotten worse, he has had many meltdowns. He had a very bad one about 3 weeks ago and because of it he spent 5 days in a partial hospitalization program which didn't work so he was asmitted to a Child Assesment Unit at a Boston area hospital for 9 more days. I am soo frustrated because my son spent 14 days in total being observed and still the docs at the hosp told me it could be years before he is properly diagnosed. i told them I need answers. I need to know what is wrong. To me the dx PDD-NOS mean that they don't know. We were told that he could possibly have Aspergers and ADHD. I initially thought my sone had Aspergers but was told no by another doctor. I personally think he has Aspergers and a Mood Disorder because he is very irritable most of the time. You are not alone. I often wonder how others get their dx soo early on while I'm told it could be years before my son will be properly diagnosed. Please keep me posted You are not alone!
Take Care,
Angela
Hi Lesley,
When our Son was dx, I'd went through the school system first... didn't KNOW I could go to a dr for a dx...don't ask me why... anyway, he was 3 and a ahlf y/o, & way behind what my oldest Daughter had doine at his age, so I knew SOMETHING was afoot. I went through the school system because I went straight to the "special needs" dept. Then it only took a few months, they dx him at first as mildly autistic with "social disorder". Now his dx has been changed to HFA (High Functioning Autism) because he has come a really LONG way from when he started. He could only say one word at a time, no sentences at all, & walked like he'd just learned. He didn't learn to walk until he was 18 months old. He wasn't potty trained until he was almost 3 and a half y/o. He has always "flapped" his arms. He used to turn in circles watching everything pass by through the corner of his eyes. He was obsessed with toys that spin, & to this day they draw his attention. He has always been obsessed with lights & musical things. Anyway, it was a fast dx through the school system, & when I told his pediatrician about his dx, she agreed.
Good Luck!
God Bless you all & keep you all safe!
Linda...aka Tony'sMom... aka MWN64I took Luke to a developmental pediatrician when he was just over
2y/o. The early interventionist is the one who suggested it ...
our bonehead doctor assured me all along that Luke 'definitely is NOT
autistic.' Well, guess what? Here we sit with an autism
diagnosis. *sigh* Don't feel bad for not being able to
diagnose what it seems to take many medical professionals years to
diagnose ... it does no good looking back now and trying to see who to
blame. In fact, it sounds like you did all you could to try to
get your child diagnosed and the services he needed! Just go
forth from here and keep up with the therapy. Good luck to you
AND to your ds! Lesley, my son is 9 and we just got a dx of pdd-nos a couple months ago, so don't feel bad. Oh, and he'll be 10 very soon, so we were actually a year behind you. I knew from the beginning something was wrong and went to drs repeatedly but they told me that I was overreacting, complaining about nothing, and then they just started blaming me, maybe I was depressed or too anxious. At that point, I'm ashamed to admit it, I started lying to his drs about his progress. Did he point at objects? Oh sure, yeah, (never). Was he talking in sentences? Absolutely, (not). I was sure that all of his problems were MY fault and was very ashamed. Nate wasn't potty trained until well after 4. So part of his late dx was obviously my fault. I do think it would have been helpful if the drs hadn't been so condemning and if there had been more info out there about asd's. Maybe then I would have put 2 and 2 together and pushed harder, guess I'll never know. BTW, We pushed for years for testing through the sp. ed. dept at the school and got nowhere. We finally paid to have it done but didn't know how to choose a dr and, imho, the 1st dr felt overwhelmed and intimidated by the dx and so backed off of it. He initially rcv'd a dx of expressive language disorder and generalized anxiety disorder. When we took him to the dr that would be treating him he spent tons of time w/ him, w/ me, consulting w/ his partner and finally told me that Nate's is a complex case but 1 thing is extremely clear: he has a developmental disorder and it is pervasive. They're thinking maybe HFA, but for now we've got a pdd-nos thing going on. Hang in there, keep pushing, don't give up. And don't feel bad, you're not the only one getting the late dx. Well...luckily my ds's ped is really great. He said if I had any concerns that they might be valid and that he would help me any way I needed to find out. So as I stated on my last post, I have paperwork (just got more today) in at the Child Care Center here. They needed a referral card from my doc. I called them and they wrote one right out for me no prob. I have all the new papers filled out now (paper to release info and what not) and a video and all sorts of other info I gathered (some online tests I printed and his journal) and will be dropping it off next week. Hoping for quick call afterwards. My stepmother's son took til he was 12 to finally dx him after years of them giving him all sorts of other diagnosis. She knew from when he was 2 something was off, and had to push and fight dr's and specialists for many years. Meeting him you can tell something is off about him, but he's my age now and he speaks well and even graduated high school. He has a weird fake laugh though and his conversations are very one sided (obsessed w/ dvd's and movies and has photographic memory for them). I will say that this disorder is so complicated w/ how many signs a child may or may not have and to diff varying degrees that I can sort of understand why it's so hard for many to dx. Amber I started trying to get answers when my son was 2 but it wasn't until right when he turned 3 that we got the diagnosis. A lot of it had to do with I KNEW something was wrong, and i even suspected autism, and I KEPT PUSHING. And it still didn't happen soon enough for me. Becasue he is social and makes eye contact no one wanted to be the one to "label" him. Finally got him on the list to the autism center after we moved here and they are the ones that gave the diagnosis. Glad I did too because he is starting school in august and they are putting him in a autism class to start with and I dont' believe he would have gotten that if I had not had the eval done. Karrie Thank you all for your replies. It is frustrating, and I just hate that we've been going for so long without really understanding. I am glad that he's had the services he did for all these years, again, I don't know where he'd be without them. Some of it was the doc's....they'd offer about 3 1/2 minutes of their precious time to see how your child is developing, and after a year of her saying "oh he's a boy, he'll talk when he wants to" I finally planted myself in front of the door and wouldn't let her leave the room till she did something different....hence the hearing exam, speech and OT following. I think where I went wrong, was to believe that the school system had his best interest at heart, and I left it up to them to set goals, monitor progress, to really KNOW what the issues were...that turned out not to be the case...they're job was to offer as little as possible for as long as possible. So while now I've insisted they do proper re-evaluations, I am now also consulting a specialist (financial probs kept us away from the million dollar docs). And like Tammy said, trying to find out what he had for 6 years kept our attention from it as well, so we didn't have a real doc either, as I'd leave pediatricians everytime they'd say "oh it's the flu"...my husband suspected Autism all along, and I kept saying, well no, it's just DSI, looks alike, you know? And I left my trust with his therapists. While they did a great job, I needed to do more. I just have to say though, I think you all are remarkable people! I love the way you love and support your kids, and how you represent teh greatest strength I think I've ever seen. You are all really amazing. thanks again for your replies ~Lesley I had no problems with the dr's giving me a referrel. It was the insurance that was the nightmare. They didn't want to pay for it, no matter how many referrels I had. Tammy Leslie, The diagnosis of PDD-NOS for my daughter came over a LONG time. She is 12 now, and the first diagnosis she received was when she was 7 for Attention Deficit Disorder (inatentive type), shortly after that she was diagnosed with an Expressive and Receptive Language Disorder. A year or so later I was told by a different psycologist that she also had mild to moderate OCD (obsessive compulsive disorder), another Dr. brought up the idea of bipolar. It wasn't untill obout 14 months ago that again a DIFFERENT psycologist diagnosis Michelle with PDD-NOS.!!!! My suggestion to you is to do your homework. Read all you can about the dirrerent symptoms related to different disorders. YOU know your child better than any Dr. We took Owen to our GP at his 12 mnth check up..he seemed concerned he wasn't talking...but said to come back at 15 mnths, because they don't start speech until kids are 2 anyway. I spent those 3 months worried, and researching..when I googled some of his symptoms, Autism popped up EVERYWHERE. At 15 mnths we went back in..The Dr referred us to ST and we were on the waiting list..I mentioned Autism..and he shook his head and looked at me like I was nuts. At our 18mnth check up the Dr went through his little check list of milestones...only asking me the Motor skills questions..I spoke up, and said, you know I have some social skills concerns..he decided to go through that checklist too..the last page he was about to skip and send me home without asking..He then set us up with a Pead. We had our first visit..We told him we were concerned about ASD. I still wasn't convinced..man if I only knew then what i do now!! He diagnosed him basically on first visit..we did go back for a full assessment, once without OWen then again with him..The fact that Owen spent the whole visit..opening and closing his cupboard, and never looking around..or even exploring what was in it...was his big clue. WE then went to see the regional pead autism specialist..and it was confirmed. It wasn't a bad journey to dx..like some people get..but I still had to push our GP. Drs can't really not give you a referral if you ask for one..just keep pushing, until you are on their nerves, if there is anything else you are concerned with.
Kellie
Copyright Autism-PDD.net