Diagnosis - huge waiting list

Post Reply New Topic

I finally decided to go for an official diagnosis. I always said it made no sense and wouldn't matter anyway but I read about Colorado State University and their great program and I'm only a few hours from there and thought maybe... just maybe...

their waiting list is months to a YEAR!! !



Oh My Gosh.

I guess we all know what business we should be in.

you should check out research studies that do evals. for free. They pay you and they do the evaluation. That's what I did and I got my evaluation within 3 weeks.

I think I may be in for some of the same. First, I am a veteran and make very little money , but I have had to wait months and months just to get a new patient appointment. Yes, this is how veterans are treated. Then I will have to wait for my psychiatry appointment, which may be months from there. Then if I see the doctor and he or she is willing to discuss ASD with me I may have to be referred to UNC, and that has a similar waiting period to your University I have a feeling theat UNC isnt doing adults anyway- probably just kids.
*sigh

So I feel your pain- just hang in there and try to keep yourself occupied. Maybe you can see a psychiatrist in the mean time?

I don't have insurance and don't make enough money to see anyone else. I was hoping to get into this program at CSU because of their sliding scale and it's grad students who do the evals.

you should check out research studies that do evals. for free. They pay you and they do the evaluation. That's what I did and I got my evaluation within 3 weeks.

Where would one begin to look for something like that? Where did you have yours done?

I have just had my diagnosis here in the UK but it has taken 6 months. But alongside my AS diagnosis I have been diagnosed with Agoraphobia and OCD - which are supposedly common with the AS condition. Anyway I'm very glad I went through the process as family and friends now understand me better as well as me understanding myself.

Owl

The UK has always struck me as very AS friendly. Not so here in the US.

Well it's looking that way. There's been a Bill passed in Parliament for Autism / AS which comes into effect this month I think, so that all care needs are met and future employers / councils have to a abide by it.

It freaked me out when I saw that some US medical insurers refuse to insure if you have AS. What's that about!

However I still find people here in the UK don't quite know what AS is. My job centre has had an education over the last 6 months with me - including me telling them parts of there system are unnecessary - and I received the reply ' Are you saying the person that designed this form is stupid' - and I said 'I am saying exactly that - yes they are stupid'. My wife later explained to me not to voice these opinions and just to sign on.
But then so much of the neuro-typical world is stupid.

Owl

That's a pretty long wait. Are there any other cities nearby that don't have waiting lists that are as long?

Isn't College State University in Fort Collins, CO... and where Temple Grandin is a professor on its faculty? Most colleges and universities have a Psychology Graduate Program that do such evaluations to give there students training and experience. Doesn't the University of Denver also, have a similiar program that provides evaluations? If not, then get your name on that waiting list...it doesn't hurt to wait and time has a tendency to fly by anyways!

I have also been trying to get a diagnosis but I'm not too entirely sure where to go. Money is also a problem for me so it would be amazing if I could find a research place that would do it for free. I have called a few psychologists and they charge between 400 - 1000 for a diagnosis. Where do you live Earthmom? I live in Denver.

Pittsburgh has a university that does stuff like that. You want to google study finder and check out big Autism research universities think MRI and sensory programs. An added plus to having your diagnosis be a research one is it's not on your insurance. I can now take the social skills classes I desperately need.

Plus they pay you sometimes. some places even pay travel expenses and hotel

http://www.wpic.pitt.edu/research/cefar ... efault.htm

I have been looking for a research study for a long time now and just I sent you a PM about all this kate123A. The trouble is, I have not been officially Dx-ed with an autistic spectrum disorder. According to all my neuropsychological evals, I do fit the general NVLD pattern and therefore have been Dx-ed with LD-NOS or Mathematics disorder on Axis I. But as some of you here on WP know, I believe I have some serious learning/memory problems which somehow haven't shown up on the "radar screens" of all the neuropsych evals i've had. Problems that the overwhelming majority of those with NVLD/AS who are within my IQ ranges don't seem to share. Therefore....I can't find any research studies i'd be eligible for considering I don't fit into any neat diagnostic label aside from learning disability, "not otherwise specified". I'm still going to see if they might (by some miracle) accept me for this study at the University of Pittsburgh. After all....they ARE also looking for participants WITHOUT autism (as a control group I guess) so perhaps I might have a shot there. I will contact the Pitt study next week, I grew up in the "burg" anyway and much of family lives still lives there, so I wouldn't have to worry about hotel expenses, meals, etc.....

In short.....i'm looking for a research study which may include some more extensive and comprehensive diagnostic procedures (like MRI or other neuroimagining techniques) i've yet to undergo. Now I know some of you (like Anbeund) have told me an MRI probably won't tell me much more about my actual LEARNING problems than I already know. However.....I think there is ample reason to believe an MRI MIGHT be able to tell me more about the long-term memory problems I believe I have. These problems are at least as serious and disabling (in terms of my academic, vocational, etc....functioning) as any learning problems I have with math, visual/spatial-nonverbal reasoning, etc.....

Case in point from this article: http://brain.oxfordjournals.org/cgi/con ... /123/3/472

Analysis 3: left- versus right-temporal patients
The analysis was repeated comparing left and right-temporal patients only. Of the left-temporal group, MRI data were available for eight of the nine patients. In five cases the MRI was normal, in one case there was hippocampal sclerosis, in one case there was an arachnoid cyst and in one case there was asymmetry of the temporal horns. In the right-temporal group, MRI revealed evidence of hippocampal sclerosis in four patients and in one case the MRI was normal. The groups did not differ significantly on clinical or standardized neuropsychological variables (Table 5). In particular, there were no significant group differences on standardized verbal and non-verbal memory measures.

Also....this article clearly demonstrates how significant impairments in long-term memory could be overlooked by standard neuropsych memory tests like the Weschler Memory Scale. I realize they're talking about epileptics here and I don't have epilepsy, but i'd guess if LT memory impairmens in epileptics can be missed by the common neuropsych memory tests, then they can also elude such tests in the cases of people with other neurologically-based memory problems. This is exactly what i've been trying to get across in regards to my own memory problems all these years. To no avail since none of the psychologists i've seen seem to agree and/or care.


Since neuroimaging tests like MRI are costly, the only possible way I could undergo one is via a research study. My insurance certainly won't cover the costs and I can't afford one out-of-pocket. Furthermore....it would be nice to deal with professionals who MIGHT know alot more about NVLD/ASD and neuropsychological problems in general instead relying on the psych grad students and psychologists who've administered all my neuropsych evals thus far. No offense to anyone....but most of the aforementioned really didn't seem to know their a** from a hole in ground about anything aside from the "common colds and cancers" of mental/neuropsychological disorders. In fact....the last "neuropsychologist" who tested me never even heard of NVLD!! !


At any rate....if anyone else out there hears about any research studies which may be suitable for me....please let me know. Needless to say...any studies pertaining to learning disabilites (and NVLD specifically of course) in particular or human memory/memory disorders would be best suited for me, I just haven't come across any. Being in the "Not Otherwise Specified" or "neuropsychologically idiosyncratic" category really isn't a pleasant thing. There really aren't too many services available for those who don't fit neatly into a diagnostic label. Since I don't display any repetitive and stereotyped interests, behaviors and activities, I didn't meet the criteria for an Asperger's Dx. In retrospect... perhaps I should've attempted a little "malingering" Maybe then a few more options would be open to me if I had an actual ASD diagnosis. There are obviously plenty of research studies at respected universities people with a Dx-ed ASD can participate in. I, on the other hand, get stuck with the "professionals" who might as well have a Psy.D. from a diploma mill

Eh well....Murphy's law seems to be my only constant companion. In the meantime....I will contact this one study at the University of Pittsburgh next week and continue trying to find others on my own.

Believe me.....it's far more unfriendly to those of us without a formal autistic spectrum disorder diagnosis who nonetheless have significant idiopathic neuropsychological issues.

At least there are research studies available for those of you with an official ASD diagnosis. I have not been as fortunate and as a result, having been living with a profoundly disabling neuropsychological mystery for 40 years.

I got contacted - they want to do the testing for me and my son on June 12!

That only was about 2 months on the waiting list!

I am terrified. I'm so conflicted over this - if it's a good idea, a bad idea, stupid, a waste of time and money and will be very hard to go through.....

My son doesn't want to do it. He says it doesn't matter either way anyway so why bother. He has reluctantly agreed to go with me but I think he may back out. He think's it makes no sense to do it.

It takes a full day for each of us, we'd have to stay in a motel the night before and the night in between. It will cost alot, and be really uncomfortable to go there and be in the strange place and go through all of this.

I talked with one of the therapists today who will be running our testing. We talked on the phone for an hour and a half and I thought she was very pleasant and easy to deal with. But I didn't sleep all last night just in anticipation of making that phone call That makes me wonder what condition I'll be in for the day of testing

Half of me thinks this is a very good thing and I'm fortunate to be able to do it and half of me thinks this is absolutely crazy and I need to drop it right now and forget about it.

That's ironic. I got diagnosed and I didn't even want to be, and you want to be but can't get it.

My main goal here is to get my son tested. He is just stuck in his life and not progressing and unable to really get his footing. He has classic symptoms and has for his whole life, but is in total denial that he has 'anything'. I don't blame him but if he can get some understanding and even some help I think it will be positive for his whole life. I offered to get tested as well, partly to help him and have him feel better about going. But I don't think there's anything that a diagnosis one way or another will change in my life.