need advice, thoughts and "been there done thats" (autistic, Asperger)

[emailvasally]

Sorry this is long but I figure I should give you some background.
First, I have been driving myself crazy trying to do my own research on the internet (which i'm slow at) and suddenly noticed I was self diagnosing everyone in my family! I am so confused with all the info but of course cant really find anything directly relating to my situation. So I figured it is time to stop.
What would be great is if people could tell me what they did wrong, right, or wish they had done durring the diagnosis process. also what all is involved in the process.
So here it goes. from about the age of 2 I thought something was not quite right with my son. (now 8). until Aug when I just got real pushy with people everyone (except my old neighbor) kept telling me nothing was wrong.
early childhood was only minor red flags. from about 1 to maybe 3 he would sometimes bang his head on the sliding door. not real hard, and no apparent reason and only that door. He didnt start walking until around 14 mos although he crawled early. babbled at right stages, started saying words at normal time but hard to understand. walked on his tiptoes (still does) speech problems right away. stuttering and whole word repitition. started seeing speech therapist at 4. as a baby there was eye contact and I started noticing proplems with eye contact around 2. That is a huge pet peeve of mine so I worked with him right away on that. in the last coupleof years he's gotten much better with that, but teacher notices problems in that area.
skip forward. I finally got frustrated with everyone (including hubby) scheduled him for evaluations at 2 different tutoring/learning clinics and sat his dr down and made him listen to the long story through the years and forced him to give me a referrel. He does not see the neurologist until feb. but I was lucky enough to finally get an appt with ped. neuropsycologist. I probably could have gotten some appts sooner but there are no "specialist" in my area and i'm hearing that texas childrens is one of the best. I am finally getting some support. hubby is finally with me and I have him being tutored by a great small tutoring place. Also he switched schools and The reading specialist was floored that he fell through the cracks and he has the best teacher I have ever seen. The school is starting the process of doing what they can with testing for dyslexia and irlen syndrome.
I get so frustrated with him on almost a daily basis lately and then I feel guilty because its not his fault. I could go on and on with more symptoms but I figure as long as this is people may not read it if I write anymore.

[idrive]

Sounds like you're on the right track. No one knows your child as well as you do, so you do need to be assertive on his behalf. Keep going with what you're doing. I'm thankful you've found a teacher you believe in and that you're pursuing the neuro. It's hard to go against the professionals when you feel something isn't just right and they keep denying there's an issue.

I started a notebook when my daughter started seeing professionals, just keeping notes by dates. I also tracked the different meds we tried, doses and any improvements/worsening I saw. I would encourage you to do that because we (or at least I) don't remember everything I think I will. And then you'll have a record of what you've done and tried and what successes you had or didn't have. Good luck. Trust yourself. You're his best advocate.

[emailvasally]

Thanks. I did get all of his medical, testing, and school papers organized perfectly. Have a notebook, but didnt think to keep notes based on conversations or improvements/worsening. A few weeks ago I started slowly changing his diet based on stuff that I read. high b12, b6, protein and omega 3's. And I have cut out almost all glutein, and artificial stuff. His teacher called me last night and said she has been noticing the last couple of weeks that he is even less focussed than usual, and has "forgotten" where he was and what he was doing several times. So I guess I should jot this stuff down in the notebook and maybe slowly change his diet back to normal and see if there are changes?
I was rambling a lot, I have a tendency to do that when I have a lot on my mind, but I figured I would get more responses.
What kinds of things should I be prepared for during a neuro psychological interview or a neurologist appt?

[Aconite]

Oh honey, the frustration is normal. We have a running joke at this point: "Wouldja quit being so darn autistic?!" It's kind of...I know you can't help it, but I'm about to go insane right now. Usually it's triggered by of other people who just don't get it, or PMS, but some days it's just one pacing episode too many.

It sounds like some things are falling into place though. Best of luck to you both.

[idrive]

We took my daughter to a neuro when she was about 4. They asked all the usual questions, what was your pregnancy like, when did she meet different developmental milestones, etc. I recall they had my daughter do some activities, like stacking blocks in different ways. The appointment didn't result in any diagnosis. Two years later she was diagnosed with ADHD, and three years laters Aspergers.

[emailvasally]

He has a lot of the signs of Aspergers that I see online. Sometimes I wonder about that. Although He is overly loving and friendly. everything effects his emotions. And apparently the biggest symptom is being emotionally "distant" depending on where they are on the spectrum.

I have filled out so much paperwork that I cant imagine what else they could ask. Nor can I imagine what they will do for 12 hours.