best way to get diagnosed? school or private?

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Hi everyone, this is my first post here. My son J has always been quirky to say the least, but many of his oddities we thought he would outgrow...and he is not.... and just this week have had a friend of my mom's who works with special needs/at risk kids watch/talk to my 3.5 year old and see what she thought of his odd behaviors and speech and AS was the first thing out of her mouth. The more I research into it, the more familiar everything sounds, and I am having a big realization at this point. He has the superior memory skills and vocab, but most of his speech is quotes from other people, TV, etc...he never used the correct pronoun, and instead refers to himself 3rd person, has very specific interests which he talks repetitively/incessantly about, has not potty trained, doesn't use untensils well, etc, etc....I know that I need to get him evaluated to get a formal diagnosis and I am not sure where I should go for that. I have been directed to my local school district's pre K centre but when I called there, I was answered with "oh dear!" and I left messages 3 days in a row, non of which were returned....so if they can't even return an informational phone call, do I really want them evaluating my kid? Is it better to be patient with the school, or to seek out a private psychologist? Any advice from anybody who has had to go through this much appreciated, and also any personal accounts of what to expect from the testing process itself...I am a little freaked out and just trying to be prepared.

thanks in advance...

private evals are often costly and not necessarily covered by insurance~ that is to say, many privates psychiatrists ( at least around here) don't take insurance & then you're left trying to fight with the insurance company to get them to cover the costs......having said that, if he's not in the school system yet, then trying to navigate your way through the system can be daunting. you don't say whether or not he's going to pre-k now ?

definitely private!

nope, I was waiting until he was potty trained to start real pre-K classes, but now, knowing that he probably needs to be in school and needs help I want to get that ball rolling as soon as possible. I can't even get a response about who does the evaluations for the school system and how often they are done, so I can only imagine the actual process iteself being lenghthy and complicated. I am a little worried just about the testing itself, knowing Jay I don't know that he is going to be able to handle being left alone in a strange place with a strange person and then evaluated. He can't answer our direct questions, much less a stranger. I am worried he will be evaluated as being a lot worse than he really is. I guess you could just say I am nervous about the whole thing, and not getting any answers from anyone or having any idea what I am getting into is not helping.

alot of what's involved with an eval is a questionnaire for you to fill out~ detailing his development to this point...ie; when did he walk, roll over, crawl, say 2 word sentences...they'll ask you questions about his social skills, motor skills. you'll get questions about sleep patterns, any habits that he might have ( ie needing to do certain things in a specific order/manner). what seems like a million other questions too.
when my daughter had her eval at age 7, she was brought into a room with the dr & told that we would be waiting in the waiting room if she needed us. ...actually, it was pretty cool because the room she was tested in had a 2-way mirror so we could actually see and hear how the testing was going. she liked all the one on one attention and didn't seem to have a problem with doing the tests~ she thought most of them were fun ! ( some of the tests look at the child's ability to repeat what's said to them, the childs ability to identify every day items, the childs ability to pretend play, the childs ability to show emotional reciprocity)
when my son was tested at age 13, he had days that he could barely make it through the testing....the evaluator stopped the tests due to son's level of anxiety. the good news is that the evaluator didn't press son to perform, the bad news is that the total eval took much longer because we had to keep scheduling testing visits.
the good thing about getting a private eval done is that you get to choose who you go to, and the dr has more of a vested interest in getting you results ( the doc wants to get paid ! ). the bad thing about private evals is the cost.
the good thing about school evals is the cost ( free !). the bad thing about school evals is not getting to choose who you go to~ sometimes school systems have great docs, and other times they have docs like the one for my school system who doesn't believe that aspergers exists !
***a caution about interacting with the school system ***
as much as you're worried about your son, sometimes the school systems get nervous about "parents like you"...what i mean, because i'm a "parent like you", is that you appear to be anxious & overwhelmed with the situation you've been thrust into (and rightfully so !)..............school systems look at parents like us as needy & perhaps overly dramatic. the more you call the system and ask about having your son, who isn't enrolled, be evaluated~ the more the school wonders what's really going on.
honestly, i say enroll your son & let the teachers know what his specific issues are~ let them deal with the issues. ...in a perfect world, they'd pick up on his issues & the need for a dx right away. in the world we live in, though, be prepared to document all the conversations you have with staff & all the issues he has at school ~ and then use these as ammo to get the system to do an eval for him.

thanks for all your advice... my main question about the enrollment is that since the school year just began in Sept, I didn't want to wait until next fall to do anything....I was hoping if he got evaluated and they saw that he needs to be around other children and needs help that maybe he could get started right away....maybe that is just not the way things work. This is my first/only child, first time dealing with any kind of school, first time dealing with any of this stuff....so I hope the school isn't "afraid" of us...I am anxious and overwhelmed, but all I wanted to ask is if/when they do the screening/evaluations and if their pre K class only enrolls in fall so that if that is the case I could start shopping around for other suitable preschool arrangements....I just can't seem to get a call back, and while I understand that I am not their top priority, it is frustrating to have it all up in the air.

Private. Both of my children's evaluations were 100% covered by our insurance - and our insurance typically SUCKS. I mean, they wouldn't even cover a repeat ultrasound when I had Placenta Previa with my son (which can be fatal to mom and baby). But they did cover the evaluations, for which I am thankful. Most insurances are getting pretty good about psychological services, but do check first.

When you have a private evaluation, you don't run the risk so much of having your school district deny your child services.

so if you get a private diagnosis the school has to honor it and treat accordingly or do they have to do their own eval too to decide what services to provide? Did those of you who sought a private diagnosis choose through reccomendation from a center for autism?

thanks-- it is nice to hear opinions from people with hands on experience with this stuff

Private diagnoses don't guarantee services, but it carries weight. Often they will also act as an advocate for your child to ensure that they do receive appropriate interventions in a timely manner.

I took it upon myself to contact a large teaching hospital nearby with an excellent pediatric psychology reputation. Fortunately, our insurance was cooperative. They have a center for autism. I wanted someone with a LOT of experience to ensure accuracy, and they were worth the wait.

We went to a private developmental pediatrician, which I highly, highly recommend, because she has been our link to services, therapies, summer camps, etc., etc., etc. She helps us with what we can do at home, medical/diet/sleep/general health issues, sensory stuff, ......

Some of the school district's evals were a joke. Their first OT said, "Usually I know right off the bat what is going on with a child, but I just couldn't figure your son out." She decided that he didn't need clinic based OT, even though everyone who had worked with him before that said that he did. I asked for a re-eval, and the second OT from the district said after a couple of minutes, "Get this kid in clinic ASAP."

I knew from our dev ped that clinic based OT was key, so I pushed for it. I even took an advocate to the IEP meeting, and she was so happy with the rest of the services that he got that she didn't really seem to care about the OT.

The school district's bottom line is on whether or not your child can learn in a classroom. I think that is a big problem for Aspergers kids in general because they are soo academically smart. When they see that he knows numbers and letters or can read, they don't see a problem. If he also doesn't create a disturbance around other kids, he can easily be overlooked.

I don't know what state you live in, but in many states, you can get good information and possibly an evaluation through the state. One of the best things you could do is find a local parent support group, because these parents have been through the process and would be better able to steer you through the maze and give you pertinent information for your area.

Kris

I am in IL, near St. Louis -- I have not thought about anything through the state, but when I tried going to our pediatrician to get a referral for eval. I was told they go through the state and only handle kids up to age 3 and then it goes over to the schools...so I have a feeling it is either school district or private for us. I haven only found one parent meetup group in our area and it seems to be mostly older kids (12-14 years old) so I could get some info, but it would not be too much fun for James (my 3.5 year old) I am nervous about just what laplantain said, that he is smart and quiet and will get ignored in regualr school...I am gonna give the pre k school another few business days to get back to me and then I am going to try to find a private doctor somewhere if I don't hear anything. Where did you all start when looking for a private evaluation? I am nervous about picking just anyone to do such an important thing that can affect my son's placement in school. thanks...

and for those of you who did go the private route without insurance covering it...how expensive are we talking here for evaluations?

we paid $900 for son's psych eval & then $1500 out of pocket for son's neuropsych eval.....$2400 out of pocket for daughter's psych eval........
were able to take all evals off taxes....
son was referred to original psychiatrist by pediatrician. we felt that there was more going on than psychiatrist picked up on & then had a neuropsych eval done. got the neuropsych reference from a co-worker.........went to different psychiatrist for daughter based on friend's reccomendation

well if the school doesn't call me back Monday, I guess I can always sell my plasma to pay for the private evaluation. Maybe a kidney... I am trying to remain positive while waiting for this process to happen, but I can already tell it is stressing me out. Kudos to all of you parents who have gone through this and not wrung anyones neck out of frustration. I really appreciate all of your support and knowledge.

For the most part I'd say private, but it does depend on the school in question too. When I was student teaching we had a new student who was on the far end of the Aspie scale. he had been diagnosed privately, and whoever he went to for the private referral wanted this kid to come to school and just be a regular student.
The principal refused to accept him unless he was with a full-time aid.

The kid couldn't put his papers in his own notebook - he tried, he just couldn't succeed at it. he also couldn't even use the restroom by himself.

Clearly in this case the schools evaluation of his ability was better than the private one. But it sounds like in your case, you should probably at least start with a private evaluation.