Hey guys! I'm new to the forum, but not new to Autism.
My daughter is 7. She hasn't had a firm diagnosis. She's hyperlexic for sure, but it hasn't been decided if she has HFA or AS. It seems to me that you treat the symptoms the child has no matter the dx. I've been lucky that her school is willing to work with me in whatever she needs without a dx. I just wondered if anyone thought it would be important to get a firm dx of AS or HFA. I'm not looking forward to more testing because it consists of trips to out of town doctors and more money( our insurance isn't so great. It hardley covers her OT and LT).
I would love to have anyones advice on this.although it's wonderful that the school is giving her the services she needs without the dx, in my opinion, it's best to get the dx, that way you're covered if behavioral issues ever arise and it'll help secure more services for her in the furure. maybe with the dx, the insurance co will be more forthcoming with funding for her therapies? i don't really know if there's a right answer for this but, this is my opinion in the matter. have a great one.HI JENKX WELCOME TO THE BOARD! I went to a support mtg. a few months ago in my county of PA and the moms there were telling me about there kids as I was being my first time and all.I said is your son high functioning PDD to a mom shes like hes AUTISTIC thats it..zip..lol...b/c with the dx of that wether its HFA OR PDD AS HERE ITS AUTISM AND THATS IT. ACCORDING TO ALL THE DOCTORS here.so TO receive more services and so on, I WOULD check into this with your doctors and have it written out thats its autism. The autism task force and DEPT. of welfare in my state are all working together b/c of autistic kids in the spectrum can receive the insurance covered under the state, but if they make over a certain amount a year the parents have to pay a certain amount of premium which just went up to congress and its still up inn the air. b/c all of our children need services like OT,ST, AND SO ON..and it is costly.My son is on state funded insurance due to us meeting the state guidelines. so lately Ive wanted OT for home and there so backed up but insurance is helping us getting him a homebound eval. as well as myself finding one that they might be able to negotiate with..my son is 4 1/2 yrs.old and is PDD/NOS. adhd,odd,ocd,severe sensory issues,annd epilepsy.on medication for all these. good luck we are here to support you ...cyndie
Jenkx,
OH I know what you are talking about as far as doctors go...LOL I have not seen a doctor since my son was evaluated at the autism center that has great understanding of this spectrum. At the autism center here when we went for an evaluation i can't tell you how relieved i was to talk to something that knew more about these things than I do. I really must have aggravated them with all kinds of questions..LOL As far as finding other parents that are going through what you are in your area I would look into your local resources because a lot of places have a parent to parent network where you can be "placed" with another parent that has a child with a simular diagnosis. Here in South Carolina it is called Parent connections and they deal with all different disabilities and it connects parents together. They actually found me another parent with the same age and diagnosis child for me to call whenever i have any questions. THey also have monthly activities or meetings for everyone to get together. I myself have never gone to one of these things because of my own problems with meeting new people (in person), but if your interested in something like this then you can check your local resources to see if there is something like this where you are. On the newbie thread at the top of this message board there are links to find resources for different places and such. You could start there. ANyway...welcome to the board..glad to have you. Take care,
Karrie
Thanks guys! Now that I've spent time on these boards I realize what my real issue is. I've allowed the OT and LT because I know that they are educated professionals that specialize in certain areas where dd has difficulties. But as far as any doctor, I don't trust them. It took 2 years for me to finally understand dd's problem. When she was tested, I'm the one who had to tell the doctor what hyperlexia even was. She had never heard of it. She looked into the info I gave her and said that she did have all of those symptoms so that was her tenative dx. In the spring, we had a meeting at school to discuss dd's meltdowns and other behavior problems. The school counsler recommended a psychologist to help her learn to deal with things. We went and I just thought it was a waste of time. The first few visits I spent frustrated because she just couldn't connect with dd. I know I'm the only one that can trully understand her. The next few visits she started some types of games and therapies that were way behind what we were already doing at home. There is no one more studied in dd's issues more than me. I have read more books and spent more time on research than anyone could imagine. In my area there isn't a doctor thar specializes in autism. It feels like a waste of time to take her to see anyone. It bothers me greatly to hear this phrase. "I've never seen anyone quite like your daughter. She's very...unique." In my little corner of the world dd's alone. I would love to find another child like her around here for her to play with, and another parent who knows what I'm going through.I took Alex (4.5 pdd-nos) for the whole enchilada testing at U of M and they didn't give me a firm diagnosis. I think they were afraid to categorize him because of his age. I just flat out asked the devel ped if it was pdd-nos and she agreed. The school system did their own testing and want to do more in the fall. The school psych said that an educational diag and medical diag could be different (????). Our school is implementing a new autism testing program in the fall, they will test him then. Our pediatrician didn't address any of my questions about him, these guys are the worst. He just said "don't worry, boys are just slower to develop". What is this 1950?
I guess my point is to go for the big testing, the schools and the peds don't know as much as they should. That should put your mind to rest too. I think I got more from our school system because I walked in with U of M test results. I know people in the same situation who rely on the school alone and they aren't getting all that Alex is. Remeber your the mom and you know more about your child than anyone. Good luck to you.
i have a question regarding all this dx talk. when my daughter was first diagnosed after seeing a neurologist and psychologist, they told me she was PDD. but ever since she's been in school, the specialist and therapists say she's HFA. everything in her school records say HFA. are they the same thing? what should i consider her? i cant get any paperwork on her actual dx because the psychologist had it, but he is no longer a psychologist and i cannot seem to track him down. the agency he worked for has completely died, so i think i'm at a dead end. even our case manager has nothing on the dx, but says not to worry about it. so now i'm all confused.PDD stands for pervasive developmental disorder. Under the Label PDD there are several other disorders. Autism, Aspergers, Pdd-Nos, Retts, and Childhood disenegrative disorder. HFA is when your child has been diagnosed with a PDD called autism but is high functioning. Hope this helps,
Karrie