This may be a little late to post this, but when we suspected our son had autism, we were referred to a child development specialist. She and her nurse came in the room, and she observed how he interacted with the nurse and asked us questions at the same time regarding his behavior, etc. It was about an hour long visit, at which point she gave us the diagnosis. We didn't do bloodwork, mri's, eeg's, etc. because we felt it would be too traumatic and would yield little, if any, useful information.
Raggie...I am hoping for the same thing. I don't want to have to do blood works and jump tons of hoops. I don't want to make ds go through all that. If all they need is documentation then I'm good! I have like 20 pages that I call Aspects of Aiden. It's all about him and his odd behaviors and things I've noticed. Also a journal of diff days and events. My state doesn't seem to have much so far. I'm going to do a lot of looking into it next week after ds's b-day is over with (tomorrow). Even that unlocking website has nothing for me in my state lol. I'm gonna have to be super mom and figure it out myself.
Amber
First off all, I would not go through the school district... thier testing is different and some schools don't use the DSMV for diagnosing (even thought they should). I don't know maybe I'm paranoid, but I don't trust the schools to tell me anything about my kid anymore... they didn't tell my mom my brother had ADHD and now we have an adult criminal on our hands because He never got therapy and medication. I would only go through the school if that is your only option because of finances and such.
Secondly, I would go to the pediatric psycologist FIRST.... a lot of Autism is BEHAVIOR, even though yes it's a neurological disability, but like you said... those tests are hard to go through as an adult, imagine for a toddler who might have a disability of some sort. Zach is doing the psycologist first and then going the Neuro. This is just my opinion... she is your child and you have to do what is best for her. Also, if you went to the psychologist first, after the assessment you could ask him/her how to prepare your daughter for the Neuro appointment.
LOL we have all had such different experiences. Theres no right or wrong way... You need to do what you are comfortable with Usually we get refferals from our regular pediatrician.
I went through an infant and toddlers program first.... and while we were working with them went to a pediatric psyc who specialized in behavior I believe (dr referral for head banging and screaming) They were no help. After the Infant and Toddler program evaluated and diagnosed him, we were reffered to a developmental pediatrician... the process with him was really easy alot of play observation while I filled out paperwork in the same room... he reconfirmed the diagnosis.... after movin gto a different state shortly after we were directed to a pediatric neurologist by the special ed school psyc and the dx was reconfirmed again..... about a year later we changed neurologists because I didnt like the one we had although he was supposed to be the best in our area (he was too matter of fact and short with me) So our new and current (now retiring) Pediatric neurologist ALSO reconfirmed his dx and changed it from PDD to PDD-NOS specifically.
In the experience I went through I was told the school can not by law diagnose or even suggest autism as a diagnosis for your child... they are only allowed to diagnose non medical learning disorders / delays.
ALso if I had to do it over again... I would go through the infant and toddlers program (through age 3) or the developmental pediatrician by thats just my opinion from my experience
you can go to www.unlockingautism.org and call their national call center (the number is listed) or contact the parent 2 parent network and ask where they recommend going in your area.
ALSO depending where you go ... you can get the Dr's name and tell your daughter you are going to go see your friend mr or miss (insert first name) instead of saying DR. tell her they are real fun and excited to meet her and want to play games with her. Tell her she can take her favorite toy to show them because they cant wait to see it and to meet her. As much as you are nervous put on your best relaxed and happy face! Good Luck.... keep us posted
I personally went to the Nerologist to rule out a host of things that coudl be medically wrong other than autism and then I went to a center that deals soley with Autism and specializes in diagnosing children. I too did not trust the school psychologist to this. After all if you are a leading research psychologist in the field of autism, do you go to work for a school district?? I think not.. We went to University of Michigan Autism Communication Disorder Center, i was so very pleased with our experience there. You are the parent all I can say is totally trust your gut instints. No one knows your child better than you..thanks for sharing your experiences with ped. neurologist in my last thread. Some of the posts got me wondering if this is really the right next step for me and dd. I mean, other than the physical tests (bloodwork, eeg, mri - HOW do THOSE work with kids, btw??? I've had all those tests myself and I just don't see how that would work with dd) it doesn't sound like they DO much. They take the background history (run the tests above maybe), maybe a neuro physcial, and then send you on your way to a psychologist or somebody else to do cognitive, etc. standardize testing. Am I understanding that right? So he won't even have the basis for making a diagnosis if I understand correctly. He may say "she's on the spectrum" but we'll still have to go to somebody else for standardized testing. I'm just wondering what the point is then? Why not just go through the school district (except then I'd have to wait til they reopen in Sept).
Did you find it useful, reassuring, answer-questioning or was it just another stopgap on the road to diagnosis. Would I be better off taking her straight to the ped psychologist or waiting for school district? I guess I'm wary of subjecting dd (and myself to be honest) to another stressful doctor visit that doesn't amount to much. Also, I'm not sure how to explain to dd this next dr. visit. It's not with her regular doctor so I'm not sure what to say or how to explain it (she needs lots of prep and explaination). Thanks for all your help with this.....
http://www.aap.org/policy/autism.html
I wanted to add this link (hey I am on the puter two times in one day...woo hoo!!!)
Anyway, the American Academy of Pediatrics helped me as I was trying to figure out how, what, when and who to get my child assessed. Hope it helps someone else out too!
Hey, I get to be online for a second (LOL). Contact your States Autism Training Center and ask them for information regarding what is available in your state. Our state has 2 centers that offer what they term 'intensive evalustions' (I am from a very poor state, so I know other states must have many more), bothare connected to the 2 largest universities in our state. My son's eval was payed for by our states early intervention program (less our monthly family share) and was led by a Ped Behavioral / developmental Dr and had a Psychologist and ST, OT and PT. THere was SUPPOSE to have been a Ped Neuro too, but there was not. Our Ped strongly encouraged me to go to the Ped Neuro to rule out potential problems. The TEAM used many of the accepted tests to dx my guy with autism with sensory issues. Some of the tests they were unable to complete, because he would not cooperate. They talked to me for hours about everything and then some. As I said, there was suppose to have been a Ped Neuro there, to give his / her assessment and rule out other issues or to dx and recommend treatment. a true intensive eval should include a physical exam and a detailed history, along with the testing. (again jmho) http://www.autism-pdd.net/checklist.html
I know it seems so difficult (and it is), but you are going to do anything and everything that you need to do to help your child! Stand strong!!!!! I know from your posts what an incredible Mom you are, we dont get to hear that nearly as much as we SHOULD (MHO)
Thanks everyone. I went ahead and made the appointment. Seems as good as place to start as any. I think I just started freaking out when I saw bloodwork, eegs, and mris on your posts - felt like this was getting bigger than I could handle doctor wise.
You all helped me remember I am the parent and I am in control here. I can take or leave anything any doctor says about anything!!!!! It gets sorta intimadating and overwhelming (and I am also at the same time going through similiar issues with fertility doctors, testing, etc. etc. for recurrent miscarriages (unable to carry another baby to term), so I sorta have a double whammy with doctors and issues that have no definite answers. SIGH> It's been tough.) Between my dd, fertility issues and epilepsy, it feels like all I do is make and go to doctor visits, testing, etc. etc. of one kind or another. And it seems like you have to fight for quality care with everything - I get so sick of it all. Okay, I'm done with my little pity party for now. I'll throw another again soon, I'm sure.
Sometimes I underestimate how much of a toll all this takes on me because I feel like I always have to be "on top of it", vigilant, an advocate and of course, work on speech, fears, etc. at home. I forget to take care of myself - in fact I don't really know how, as I've posted before.
Anyway, the appointment is in mid-June. I'm going to try to take a mini-break between now and then. Not from this board but from obsessing and researching, etc about PDD. If we do get a PDD dx, all those books and research will be there waiting for me. In the meantime, I'm going to focus on helping my dd with the dx she DOES have which is language disorder and remember she is getting ST and responding well. I'm going to take a break from worry - if that's possible and just trust that I'm doing everything I can, she's getting help and all will be okay. I truly believe all that anyway underneath it all, come what may.
Thanks everyone for your help and support.