trying to get the diagnosis ball rolling tomorrow

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Dots
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23 Jun 2010, 7:31 pm

Tomorrow I meet with my psych nurse. I saw her a week and a half ago and mentioned Asperger's and she said that she had worked with boys with Asperger's and I didn't seem to act like them. I got nervous and clammed up and when she offered to bring it to the psychiatrist I sometimes see I said no.

Well tomorrow I see the nurse again and I'm going to bring up AS again.

I have the following observations of my childhood from my mother:
- I ignored other children when I was little, even if they came up to me and wanted to play with me
- I walked late and when I did start, I walked on my toes (enough that I have a permanently shortened achilles' tendon)
- When her friend came to visit and brought along a daughter my age everyone would be like, "Where's Dots?" And I'd be in another room with my nose in a book.
- If things got too bright or too loud I would get upset and then go off and insist on being alone. My mom thought this was a reaction to not being the only child any more

People that know me have observed that when I'm stressed or anxious I can have a flat voice, that I'm very quiet.

My own experiences are:
- that I never really made friends through school until I got to college and all of the sudden I found a group of people that shared my special interest. That school is now over and I'm only in contact with one of those people, still.
- I just finished my first year of university and I didn't make a single friend, or even really have contact with people
- eye contact is very hard
- I'm very sensitive to sound and touch. For example, a reaction to fireworks or deep bass from cars in the street usually involves hands over my ears and rocking. If the stress continues, I go into my bathroom, turn on the shower, and rock side to side with my eyes closed and hands over my ears. This shower is often a nightly ritual.
- I often chew my fingers or grind my teeth or rock side to side or back and forth, though I can put a lid on it around other people for short periods of time.

If I look at the DSM only, as my psychiatrist might do, out of category 1 I have A, B and D and out of category 2 I have A. C, and when I was a child, D.

If she doesn't think I fit Asperger's I'll ask about PDD-NOS. This psychiatrist's specialty is psychosis, however. With my luck they'll decide I'm schizophrenic, since I've already been diagnosed with Bipolar.

I've written all this down, so when I go in to talk to the nurse I have notes in case I go blank again.


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MathGirl
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23 Jun 2010, 8:21 pm

Good luck! Tell me how it goes. :)


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23 Jun 2010, 8:54 pm

Here's hoping your appointment tomorrow goes well for you, Dots.


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eon
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23 Jun 2010, 9:20 pm

Based on my research, the experts feel that children often behave quite differently than adults due to the differences in self-awareness. This is where there is a lot of disagreement on diagnostic criteria. I'm glad you are going. Be your best self. A lot of the testing has to do with observing how much calculation any given response might require. I hope that the person you see knows a specialist with autism spectrum experience or has some experience with it also at least.


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23 Jun 2010, 9:48 pm

Best wishes, Dots!


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Angel_ryan
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23 Jun 2010, 10:54 pm

Dots wrote:
Tomorrow I meet with my psych nurse. I saw her a week and a half ago and mentioned Asperger's and she said that she had worked with boys with Asperger's and I didn't seem to act like them. I got nervous and clammed up and when she offered to bring it to the psychiatrist I sometimes see I said no.


I'd be a little worried too if I were you. AS is a lot harder to diagnose in women than in men. Only recently have doctors begun to understand the differences between men's symptoms and women's symptoms. I've researched it all myself (kinda had to with the Schiz label almost plastered above my head). One major thing I've noticed is that yes mental illness and AS are extremely comorbid. In women AS tends to look a lot more like a schizo affective disorder, which is like BP and Schizo combined but it has a much better prognosis than Schiz. Now if you look up Schizo affective disorder you'll notice that the symptoms look a lot like AS. My understanding is that the only real obvious difference from schizo affective and AS is that with one you have psychosis and you hear voices. Now if you have BP and AS then the chances of you being misdiagnosed for schizo affective are much higher. Now if you are not hearing voices from outside your body you need to make that clear. If you have internal conversations with yourself or internal hypothetical conversations with real people you know inside your head then that does not constitute as hearing voices or thought insertion. Keep that strongly in mind.



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23 Jun 2010, 10:59 pm

I wish you all the best! :D



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23 Jun 2010, 11:39 pm

I just (re)started up that diagnosis trail myself a few weeks ago. A diagnosis is good if you require any help with functioning in your day to day adult life.

Dots wrote:
she said that she had worked with boys with Asperger's and I didn't seem to act like them


Well, everyone is different.

Quote:
People that know me have observed that when I'm stressed or anxious I can have a flat voice, that I'm very quiet.


Generally, from what i have read is that having an odd pitched voice, stacato or a monotonous one is permanent in ASD.

Quote:
I've written all this down, so when I go in to talk to the nurse I have notes in case I go blank again.


I did that too, it is highly recommended so you do not forget stuff.

Also note:
- Do you remember when you started to speak?
- Do you have empathy?
- Are you cruel to other people?
- Do you "get" social cues?
- Are you aware of other peoples feelings or their "self"?

Stuff like that they want to know. From what i read, it sounds like ASD, but it could be something related. The problem is that if you go and see a bipolar expert - you get a bipolar diagnosis, go see a autism expert - you get an autism diagnosis.

In Sweden, we have a "screening" thing, where a psychologist not specialising in anything get to do the initial contact, and you get to take a generic test that test you for pretty much everything. Out of that they can deduce a few traits that they suspect.

The last time i went there, i found out that i could have ADHD-P (ADD) as well. Fortunately, i've been able to compensate for that latter thing it in my life and i've actually been able to have jobs... You may find out something similar yourself.

Anyway, good luck with the diagnosis.


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24 Jun 2010, 2:42 am

I love the whirling of the dervishes! Best wishes.


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Dots
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24 Jun 2010, 11:55 am

Angel Ryan, the only problem with that is that during episodes, it's possible to experience psychosis with Bipolar. And I have, which is why I'm seeing this specific doctor. I might end up with a diagnosis of schizoaffective... I'll ask if she can refer me to a specialist.

I also don't know whether to chalk this up to being very shy, gifted, and abused by a parent.

Ok, leaving for the appointment now, thanks for all the encouragement and advice.


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Dots
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24 Jun 2010, 2:30 pm

Didn't get to see the psychiatrist today, but I have an appointment set up on July 6 to see her. The psych nurse said "If it is Asperger's, you're high functioning."

So she's going to talk to the psychiatrist about it and even try and get a developmental psychiatrist involved. She didn't shoot down the idea or suggest it was schizoaffective. That's the psychiatrist's realm anyway and I have hope that I'm on the path to getting some answers.


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24 Jun 2010, 2:40 pm

My experience with psych nurses is (disclaimer: I've only worked with one):

* They are the person in the office that just writes prescriptions all day.

* They see several hundred patients a week and don't remember important stuff you tel them.

* They are not qualified or permitted to make an diagnosis's.

* Telling them anything past how you respond to medications is completely pointless.

I'm not saying this to bash psych nurses. I'm just trying to save you frustration and getting your hopes up. They are not trained to and cannot diagnose an ASD. That makes their opinion on the subject pointless. Spending time and $ discussing autism with them is beyond pointless.



Sparrowrose
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24 Jun 2010, 3:55 pm

Dots wrote:
Didn't get to see the psychiatrist today, but I have an appointment set up on July 6 to see her. The psych nurse said "If it is Asperger's, you're high functioning."


If she's only used to seeing small children with asperger's, she would say that to just about any adult with asperger's, because we develop and change over time.


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Todesking
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24 Jun 2010, 6:53 pm

Your lucky the psychologist I am seeing does not "Believe in labels" :roll: Tomorrow I am going to be cutting him loose not seeing him anymore. I am going to take Horus' advice and try to see a neuropsychologist and try to take what ever test they got. :D



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25 Jun 2010, 1:08 am

Todesking wrote:
Your lucky the psychologist I am seeing does not "Believe in labels" :roll: Tomorrow I am going to be cutting him loose not seeing him anymore. I am going to take Horus' advice and try to see a neuropsychologist and try to take what ever test they got. :D




Todesking~


Just to be clear.....you don't necessarily need to see a NEURO-psychologist in order to receive a legitimate and formal AS Dx. I mean if you believe you have AS and all you're seeking is an official Dx, most psychologists should be able to determine that with a few simple tests like the ADOS and/or ADI-R. Unless you actually want to know more about your cognitive strengths and weaknesses (in terms of IQ, memory, executive functioning, attention/concentration, motor skills, etc....) there's no need for you to undergo all the tests which measure those things. Again....a full neuropsychological eval (which will include personality tests like the MMPI too) is usually quite expensive and depending on the number of individual tests administered, it can be quite time-consuming as well.

Like I said before....you COULD receive a full neuropsych eval for little or even, no, cost to yourself IF you apply for VR services OR if you can get an eval at a university psych services center on the sliding scale. I'm not positive if you're able and willing to go that route though. Were you able to contact the neuropsych's office yet? Either way....I would explain your situation very specifically to them if I were you. Just tell them you strongly suspect you have Asperger's and if so....you would like a formal Dx. Tell them you would like to receive the Dx (if it's applicable ofcourse) with the minimum amount of diagnostic procedures and tell them what you'd be able to afford in order to receive a Dx.

No matter what.....if you go to any psychologist in order to receive a Dx, it's likely going to cost several hundred even if they only administer one or two tests. That is unless you choose one of the two aforementioned options. Those options may not be ideal for you IF you're trying get a Dx within a couple weeks or so. Like I said....you might wait weeks before you even receive an authorization letter (which would allow you to see a psych/neuropsych at VR expense and provide you with the contact info of a particular psych VR has under contract) from OVR. Then you actually have to call the psych's office yourself and set up an appointment. They might not be able to schedule you in for a month or even longer.

Ditto for the university psych services option....it might take awhile before they can schedule you for diagnostic testing especially considering you have to provide them with W2 forms, paystubs, etc.....if you want them to offer you testing on a sliding scale. Sadly...you may not be able to get an appt. with a neuropsychologist right away either
if you just contact one on your own.


Bottom line....I would "shop around" if I were you and just choose the diagnostic option which would be the best for you in terms of both cost and time. You can always cancel an appointment if something better comes along in the meantime. So if you have alot of time on your hands right now, i'd explore all your options (including the ones I mentioned) and don't rule any out until you exhausted all of them and determined which one would be best for you.


I would call this neuropsych's office first and explain your situation. If they can offer you a potential AS Dx within a cost and time frame which is acceptable to you...then go for it. If not....i'd contact a university psych services center next and explain your whole situation in regards to what you're looking for, your financial limitations, etc...Tell them you need to be tested and Dx-ed ASAP and see what they say. Since most major universites have psych services centers, you could contact several in your area and determine which one would be best for you.

According to what you say about your location....you live very close to Buffalo.

Maybe the psych services at the University of Buffalo would be an option for you:

http://psychservices.buffalo.edu/


I'm almost certain there's other psych services centers at various universities in your general area, but that's the only one I could find.


Also....here's the contact info for OVR in your area. Depew is in Erie county....so this is the district office you'd need to contact if you want to apply for VR services.

http://www.vesid.nysed.gov/buffalo/home.html


If nothing else....it's possible they MIGHT be able to send you for testing/diagnosis at NO cost to you and within a timely fashion. Also...if you're deemed eligible for VR services, (and if you have Asperger's..there's no reason you shouldn't be) they offer a wide variety of services including job placement assistance, funding for higher education (including public colleges/universities), psychological/psychiatric care, etc.....


I know many people have had negative experiences with VR, but I can't say my own have been all that bad. While I haven't been happy with most of the psychologists/psychiatrists they've sent me to, it's not like I expected the gold standard in mental healthcare from a government agency either.

They DID cover ALL my college expenses though including tuition, books, supplies and parking stickers. I am hoping they will do so again when I return to college/uni in January, but i'm not sure about that yet. If they don't...I can get Pell grants and my family promised to cover any costs the Pell grant won't. It's not like i'm going to Harvard here....so whatever college/uni I attend won't be too pricey.


I can't promise anything with OVR though, at least when it comes to VR services outside of my own state. Nonetheless....it might be worth your while to contact them and apply for services.




In any case.....what's the deal with this psychologist you've been seeing who "doesn't believe in labels"?

Did you explain your situation to him and tell him how important an official Dx is for you from a practical standpoint?

Did you tell him that a formal Dx might make it much easier for you to obtain accomodations and services from potential employers, educational institutions, government entities, etc....???

Whatever his reasoning for his unwillingness to give you a formal Dx....it really doesn't matter. If you have explained all of the aforementioned to him and he still refuses to diagnose (aka..."label") you....then find someone who is willing.

Anyway...i'll post all the relevant details about my recent visits to the neuropsychologist ASAP.

That will include the results of all the tests I took, his recommendations/comments, my own thoughts, etc....The full report isn't available yet and i'd prefer to have it in my hands before I start a post about the whole affair. I SHOULD have it by no later than Monday afternoon and maybe as early as tomorrow.


I hope something works out for you soon. Please don't hestitate to contact me if you have any other questions or concerns. I'll be more than glad to help you in anyway I can here. Believe me, i've been through all this numerous times myself and I know how frustrating it can be.



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25 Jun 2010, 1:15 am

Dots wrote:
Didn't get to see the psychiatrist today, but I have an appointment set up on July 6 to see her. The psych nurse said "If it is Asperger's, you're high functioning."

So she's going to talk to the psychiatrist about it and even try and get a developmental psychiatrist involved. She didn't shoot down the idea or suggest it was schizoaffective. That's the psychiatrist's realm anyway and I have hope that I'm on the path to getting some answers.

What you were like as a kid will probably be important, so try to remember as much as you can and get as much info on that from relatives as possible.


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