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Norny
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05 Jan 2014, 9:18 pm

Hi all!

I'm in a bit of a weird position right now. To keep it short and concise I've looked through some of Tony Attwood's 'Complete Guide to Asperger's' and now I'm almost certain that I have it and want to seek a diagnosis. I'm worried about the diagnostic procedures in that I have no idea how the actual 'discussing' part of the procedure is going to work in my country and state.


The reason I am so desperate is that I'm scared of the following:

+ The diagnostician will see me as an immature 18 year old that, for example just wants an excuse for his way of life; I envisage scenarios where I will enter the room and they will immediately be presuming that I am just a confused young boy wanting a label simply for the sake of wanting it. It is apparently over-diagnosed already, most are done in child-hood etc. There are so many variables that seem as if they will 'bribe' the diagnostician to diagnose me with something other than an ASD. I feel as if I would be sitting in front of a jury, but that they would immediately assume that I was in the wrong. Lots of pressure.

+ The diagnostician will be bias and not listen to me. Because I am capable of things like eye contact I just feel as if they will contribute that too heavily towards not considering a diagnosis.

+ I learned how to lie around the age of 3 (due to others) and sort of became a pathological liar. My lies at that age and for the next few years were blatantly obvious to see through but as I got older I became really good at it. Not only does this go against the stereotyped honest nature of an Aspie (I know Aspies can become pathological liars probably as defense mechanism) but it meant that I was easily able to lie to my mum about school. For example, if I had a crap day I'd still tell her it was good and she always believed I easily made friends. I was never, and I still am not good at making friends. What if my mum was involved in the diagnostic process and answered based on what she thought she knew?

+ Do I bring a bunch of notes or do I have to answer off the top of my head? Do they use the DSM IV or DSM V? Could I ask to be diagnosed specifically under DSM V so there's no future worries? I don't know.


I wouldn't be asking if I wasn't truly desperate. Are there any Australian/Victorian's on here that have been in this situation before that I could contact via PM or email for help?

I'll definitely join this community once this issue is resolved but for now I feel as if I can't really contribute. I mean, I know I can but it's just too overbearing for me because of all these uncertain possibilities.

Thanks.



cavernio
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06 Jan 2014, 12:21 am

Bring up all these points to the person you're talking to and if you're worried you will forget to mention them, bring yourself a list.
I plan on brining a list when I finally get to talk to someone.


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one-A-N
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06 Jan 2014, 1:47 am

(NOTE: I am from NSW - and I was much older than you are when I was diagnosed three years ago)

I sent some material to my psychologist before my assessment. My parents weren't involved though.

A good clinical psychologist is trying to work out whether you are on the spectrum or not. They are not biased against you, nor towards you. They are trying to help you find the truth. After all, you are paying them, so they not trying to be mean towards you(*). I did not find the psychologist who did my assessment at all scary or skeptical. He was very pleasant and a good listener, and made a number of observations about my presentation (e.g. soft tone of voice, lack of accent) that I had not really noticed about myself.

We did not use either DSM-IV or DSM5. It was three years ago (DSM-IV era) but we actually used the <Gillberg criteria for Asperger's>. I suspect that many clinicians today would use DSM5 or just possibly the international standard <ICD10> - these are the two current standard classifications/diagnostic criteria. A previous diagnosis under DSM-IV is still valid though - I am not sure what worries you are anticipating if DSM-IV criteria are used. Are you hoping to be eligible for Medicare or for disability benefits? I qualified for Medicare assistance with ongoing therapy because I fell under the anxiety and stress category (i.e. co-morbid issues alongside my Asperger's diagnosis) - I suspect that quite a few Aspies would have anxiety, depression, or stress-related issues that qualify for a mental health treatment plan under Medicare. I don't think adult Asperger's qualifies in its own right, though.

I was uneasy the first time I went to the psychologist. This is pretty natural. After all, you are going to see a total stranger about something very personal. But he turned out to be very friendly and less skeptical of myself than I was.

(*) I put some work into finding the "ideal" clinical psychologist. I was very happy with the result.



Arcanyn
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06 Jan 2014, 2:24 am

One important thing is to try to find a psychologist that specialises in autism. They'll be far less likely to dismiss you and actually know what they're doing. It's not uncommon for specific therapists to be ignorant of autism (or anything else really), and a common human reaction seems to be simply to dismiss anything that they're ignorant about, rather than admit ignorance. Going to someone you can be sure knows their stuff makes that much less likely. I live in South Australia, and was able to find a list of people who specialise in autism diagnoses on the Autism SA website; I'm not sure if there's a similar organisation in Victoria, but if there is they should likely have a list of therapists who are good to go to for autism assessments.

I imagine it would be done under DSM-5. I got my diagnosis done a year ago and it was done under both DSM-4 and DSM-5 on account of the impending change. I doubt any diagnoses done using DSM-4 right now would be allowed to 'count' (any diagnoses before it was superseded remain valid, though), so they're not likely to use that.

Notes are probably a good idea, makes there be far less pressure to remember important details on the spot. When I was assessed I was basically given a form to fill out with lots of questions about a week before, which made the subsequent sessions much less nervewracking, because I knew that I already had lots of important information written down, so there were less things for me to remember to mention. Even if they don't give you a questionnaire to fill out, having a list of important points to give to them is probably a good idea.

I was able to avoid any parental involvement in the diagnostic process. I think just being able to remember enough about one's childhood is enough. I must note though that I did have access to some documents from when I was in kindergarten (before the Asperger's diagnosis existed) about how weird I was and stuff; I don't know how much of a difference having that material made; my recollections were probably enough by themselves, but I was certainly glad to have it. But anyways, if you have any records, or school reports or anything like that which suggest autistic tendencies at a young age, I'd definitely bring those in.



Norny
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06 Jan 2014, 2:31 am

Thanks for replying.

How much did you have to pay the psychologist?

The reason I was worried about having something like a DSM-IV diagnosis is that I assumed it implicated that I would have to be re-diagnosed later under the DSM-5. I'm not sure how the procedure works.



Last edited by Norny on 06 Jan 2014, 3:41 am, edited 4 times in total.

Arcanyn
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06 Jan 2014, 2:45 am

I was able to get a Mental Health Care plan, which basically means the government will pay for ten free psych sessions per year. You'll need to visit a GP to get one of those; they just ask a few very basic questions to make sure you do need psych sessions, but the questions are really just a formality (they're basically the sort of thing you'd see on an online test, a few basic statements which you have to rank from strongly agree to strongly disagree).

They'll almost certainly do DSM-5. DSM-4's been superseded since last year, so I don't think people are still allowed to use it for diagnoses (I'm not 100% positive about this, though).



Norny
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06 Jan 2014, 3:16 am

There's a bulk billed psychologist at my local doctor. Would that be the person I should see first?


EDIT @Arcanyn - I don't really have detailed reports but I have three videos of when I was a toddler:

Video 1 - One video is of my 1st birthday. In the video you would see me not responding to my name, occasionally swaying side to side randomly, spinning wheels on a truck, smashing a lego block into a vent for a bit, randomly going to the corner of a desk and crying, and squealing randomly. I don't really babble or talk in the video and got obsessed with hitting a balloon (I kept going back to a red airborne one) despite my parent's efforts in getting me to open a present, which I simply walked away from.

Video 2 - This was a recording of a day at kindergarten. The first part of the video showed me on an excursion to a firestation and I didn't smile or do anything really except wait in line (because I had to) to use the Fireman's hose. Once back at kinder I was visibly a loner. Everyone was sitting in chairs next to each other (myself included as we had to) and I was the only child in the video that wasn't interacting or smiling, I just sat on my chair looking uncomfortable and glancing/staring randomly (not sure what at). Eventually, the teacher instructed everyone to do a little dance and in the video I seemed to have ignored that and this was obvious as I would lag behind everyone else as I would be copying them. I would also do it without any enthusiasm and generally just appeared lost. At a later point in the video everyone ran off excitedly to play with toys and whatnot but all I did was dress in a set of wizard robes (I remember I wore the same ones every time as they were comfortable) and kept repositioning myself really close to the 1 friend I had. I sat really close to him in the video whenever he moved and would talk to him (not sure what I said) and he would just ignore me and play with his train. I kept trying to talk to him despite him ignoring me completely. I didn't play with toys. I had terrible posture - sat with my shoulders/chest forward like a triangle in cross leg position when everyone else was much straighter. My mum tells me that I isolated myself and painted (few others were at the paint boards) and that I 'was real' because I never participated in pretend play. She also said when the teachers called my name I'd look the other way and ignore them.

Video 3 - This video was of me on Easter and I was almost 2 years old. My mum and dad would give me hints as to where the eggs were but I didn't seem to respond. At one stage I walked near my dad and just looked straight ahead for about 10 seconds before turning my head and realizing there was a bunch of eggs right next to me. I took the bag and pointed at a pink egg and exclaimed 'Pink!' multiple times in a normal, highish voice and then put all the eggs on the bench. I smiled quite a bit in this video.


I'm not sure how 'autistic' or how 'typical' those videos are but especially the kindergarten one seemed very awkward to me. I haven't explained them in detail but generally I never had trouble making eye contact with people that I knew closely (such as my parents) and was fairly interested in pointing things out. I also smiled a fair bit at home. I'm aware that one doesn't have to not make eye contact or not be enthusiastic of their surroundings to be diagnosed, but it adds a little 'typical' balance to the amount of awkwardness in the videos.

Do you think I should take them in?



Arcanyn
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06 Jan 2014, 3:47 am

I'm not sure; do you mean a psychologist who's also a GP? Because basically a GP is typically the first port of call; to get in to see a psychologist you typically need a referral from a GP (in addition to the Mental Health Care plan, of course). I'm not positive about this (it might be different in Victoria) but I don't think you can get an appointment booked with a psychologist until you have a referral letter from a GP. But you can still contact them at least and ask questions, which is basically what I did, and once I'd done that went to my GP, got a Mental Health Care plan and a referral letter. So probably the best course of action is to email any psychologists you might think are good and simply explain that you're looking for a diagnostic assessment. They'll likely be able to help out with procedural matters too; once I decided I wanted to arrange an appointment she told me all the stuff I had to do beforehand.



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06 Jan 2014, 12:36 pm

If the psychologist doing the diagnosis is any good they will act more like a scientist than like a jury: their goal will be to find out the truth, not to prove or disprove that something is true. They should also be a good listener and allow you to tell them what you think is relevant. But they should also ask questions about what they think is relevant. Try not to think of this as you trying to "prove your case" and the psychologist agreeing or disagreeing. I'm sure they won't see it that way. It's up to them to diagnose what you have, not up to you.

Some of your concerns are valid, though. Many psychologists are incompetent at their job (just like many people in any other lines of work), which is why it's important to find a good one. Hopefully someone can recommend one to you. I don't think you have to have a referral - it's up to the psychologist whether they see you without one. But it's not hard to get one and you'd definitely need one if you want Medicare to pay some of the cost, anyway. You should first find the psychologist you want to see, because the referral would have to be addressed to them by name.

Yes, it's fine to bring notes and that's a good idea.

I doubt that you'd be diagnosed under DSM-4 now, but even if you were, you would not have to get "re-diagnosed", so don't worry about that.

Also, why are you desperate for a diagnosis in the first place?


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Last edited by FMX on 06 Jan 2014, 4:47 pm, edited 1 time in total.

Norny
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06 Jan 2014, 3:01 pm

I don't want a diagnosis, but I do want to be evaluated because I have reason to suspect it.

Also yeah my main worry was just that I'd have a crap psychologist and that would be the cause of concern, as if they were bad at their job I'd feel that the procedures were likely incorrectly undertaken. I've read posts on this forum and viewed several videos that highlighted just how important it is to have a decently qualified professional do the evaluation to prevent any bias views, which is what I assumed would lead to that 'jury' sort of pressure where you have to prove your case.

The most simple example of a biased evaluator is the classic 'he/she makes eye contact therefore they cannot have autism'.



alexi
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06 Jan 2014, 4:27 pm

Hi.
You have every right to seek a diagnosis if that is what you want. I understand what you are saying about your concern that you will be dismissed/overlooked because of your age. When I was your age-early 20s it was quite hard for me to find someone who didn't immediately jump to more 'typical' conclusions based on my age (and gender). Everyone just kept trying to squeeze me into the depression/anxiety box, and saying that I was 'just being dramatic' about anything that didn't fit these criteria. My absolute best recommendation for all of your concerns is that you find someone who specializes in ASDs.

Regarding services in Victoria, this was my reply to someone who asked the same question a couple of months ago. Hope it helps.

I am in Sydney, so I don't have any first hand experience of professionals in Melbourne. But the main autism organization in Victoria has an infoline that you can call to ask about psychologists/diagnosis. What you need is most likely a CLINICAL Psychologist. Not a psychologist or a psychiatrist, as I don't think that a psychologist can diagnose in Australia, and a psychiatrist generally does not deal with developmental disorders, and in my experience are dismissive of autism (no matter how obvious) simply because they are very focused on mental illness treatable with medication.

This is the link for the organization mentioned above, there's a phone number on the page
http://www.amaze.org.au/discover/about- ... diagnosis/

If money is a concern, when you call Amaze, let them know as they may know a Clinical Psychologist who will offer for you to pay less if you tell them beforehand that you do not have a lot of money. Also, tell them if you are a student, your age (i.e. why money is an issue).

Also, ask your GP for a Better Access to Mental Health Care Plan that will give you Medicare rebates for up to 10 sessions per year with a Clinical Psychologist. You may still have to pay some money though depending on what the psychologist charges, so find out first. I think you will get back about $110 per session. Technically this plan is for mental health and does not cover autism, but if you are in distress, have anxiety, depression, general questionable mental health you have a right to access this plan. If your GP is unhelpful, find one that is. There are plenty of GPs that would be happy to see you being proactive in wanting to find help and understand yourself.

Again, I stress, choose someone that knows about autism. I was diagnosed by a Clinical Psychologist in Sydney. It is not her specialty, but she has experience with autism. Being diagnosed has been difficult to come to terms with, but has really changed my life.

Good luck.



JakeDay
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08 Jan 2014, 6:47 am

Hi Norny

I self-diagnosed at the end of April 2013. For a variety of reasons I decided to get a formal diagnosis.

I was already on the Mental Health Care Plan (MHCP) for PTSD. I got onto this plan after a discussion with my GP. The MHCP affords me access to a regular psychologist.

The psychologist I was seeing was unable to diagnose me with an Autism Spectrum Disorder (ASD). She told me I would need to go back to the GP, adjust the terms of my MHCP, and get a reference to:
- a clinical psychologist,
- a neuro-psychologist, or
- a psychiatrist
She also gave me a list of psychological professionals with experience in diagnosing ASD conditions. Also, there are links online to various places and professionals, see the posts above for some helpful info.

I am unemployed so I sought out a bulk-billing professional. I have learnt to mistrust psychiatrists, and there were no bulk-billing neuropsyches in the area (north western suburbs of Melbourne). However there are a number of bulk-billing clinical psychologists across the Melbourne metro area. I visited my GP to arrange a new MHCP plus the referral to a clinical psychologist.

I did prepare for the interview: I had a lot of ground to cover and was afraid of being disbelieved. I compiled a list of traits and examples, which did help during the sessions. My drug history came up during the second session, so the professional had to interview my parents for a pre-drug history overview. Dr Catapan, based in Essendon, was a very kind presence and a good listener. She asked me a lot of questions about myself and I answered them as honestly as possible. She took a lot of notes. The assessment was NOT done under DSM criteria, but rather the CARS II (suitable for adults - I am 41).

The assessment was completed within three sessions. I think my diagnosis came fast because of the phone interview with my parents, and because I did prepare for the interviews. Dr Catapan told me it can take up to six or seven sessions for her to make an assessment, usually.

I was diagnosed with High Functioning Autism in October 2013. I am good with eye contact, and can lie (badly) when necessary. I was actually prepared to NOT get an autism diagnosis... or even worse, come away with yet another ill-fitting diagnosis. But I was so certain that I'm autistic that I would've sought a second opinion. I was so relieved to have my self-diagnosis confirmed.

Each session cost me about $120, but approx $90 was reimbursed under Medicare. And I am back on my original Mental Health Care Plan (see your GP about it).

I hope you get the assistance you need, and I wish you well on your journey :D



kahlua
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12 Jan 2014, 12:36 am

My GP gave me the usual crap about everyone having difficulty with social situations etc so I ended up contacting Janine Manjiviona (ASD specialist clinical psychologist) for a diagnosis. I went through my private health insurance, and had to take a few afternoons off work to get to the appointments.

Usually she has parents there for input on early childhood, but i don't speak to mine. I had my OH there and he was able to add value regarding my behaviour, moods etc. We did a few tests - such as interpreting emotions from faces, and usually an IQ test is done (didn't do one myself, we know its pretty high based on school\uni and my career)

I was asked why I wanted a diagnosis - which I wanted for myself only. I feel much relief knowing that this is why I am this way, and am constantly working on my "act" to make sure I can get by in the world.



Norny
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12 Jan 2014, 1:13 am

Cheers for the replies, they are all very helpful.

Some of you stated that you took someone other than your parents along to your diagnosis. Are their any limitations on who you can take? For example, would I be able to take my 17 year old sister? I only say this because she 'knows me' far better than my mum and always thought something was up with me (even at times suggesting I had social anxiety disorder etc). My mum is also very dismissive.. when I first told her about my concerns she told me I was just been stupid and looking for excuses; she insisted that it would have been picked up by kindergarten staff and others when I was young. The story here is far longer but it's not necessary for me to go on about it.

I'm unsure/nervous about asking my dad because he was raised by 'upper class' parents. His parents were always uptight about manners and discipline and their lives involved a ton of 'man-up' esque comments and examples. They are the type of people that would dismiss Asperger's as bad manners and selfishness, and I know some of that rubbed off onto my dad.

Something that intrigued me is that both my parents have what I would call possible predispositions or even traits for/of autism in their family. For example, my dad's father is an engineer, and my mum has migraines and a history of gastrointestinal problems. They both have several other aspergerish traits and it honestly makes me wonder..



kahlua
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12 Jan 2014, 1:55 am

I would think that taking your sister would be perfectly fine - the psychologists just want another person's viewpoint\confirmation of behaviour.



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12 Jan 2014, 10:26 pm

Well, I went through the process a few months back, and had no idea what to expect. (I'm located in northern suburbs of Melbourne and saw a specialist in Moonee Ponds)

The important thing to remember is that, providing you find someone who specializes in Aspergers, they will not have any pre-conceptions regarding your case.

With my diagnosis, I had to first get a MHCP from my GP (I had to "tune" a couple of answers to get over the threshold required for the referral...I don't really like questions with graduated answers (ie 1 to 5)).

Going to the specialist, I had little idea of what to expect, but there was nothing to be worried about. I was asked a lot of questions about my childhood, present situation, etc. (It's amazing how certain questions can trigger 20+ year old memories), and was given some tests to do at home (AQ, RAADS-R, EQ, SQ.) and asked to scan/email or post sheets back. Further information from family wasn't required due to the amount I was able to remember, but in some instances I believe that other sources for information may be required.

At the final meeting, I had the diagnosis confirmed, and went through the draft report. There was some stuff in there that seemed strange in that I recognised it in myself, but still seemed "cold" or "strange" when reading about it. I guess that's the difference between seeing it subjectively in yourself and seeing it described objectively by an observer.

My diagnosis was done under DSM-IV, although a DSM-V reference was also included.

Another thing is that the specialist you see should be able to see past minor things like eye contact (it's a behaviour that can be learnt...I was told I had good eye contact) and as long as you answer honestly, you will get an accurate diagnosis one way or the other. The worst thing you can do is try to tailor your answers in order to try and "force" the diagnosis you want, as chances are they'll see what you are doing (control questions, conflicting responces about similar topic, etc.) and be less inclinded to give the desired diagnosis...honesty is the best policy.