The Dysfunction Junction: Is There A Specialist In The House?

Image Description: a large cluster of smiley faces in the centre of the picture. In the background are multicoloured words against a black background like breath, here and now, accept, track, sense repeatedly printed in the background over and over again.
Image Description: a large cluster of smiley faces in the centre of the picture. In the background are multicoloured words against a black background like breath, here and now, accept, track, sense repeatedly printed in the background over and over again.

Since the end of October 2016, I have been trying and failing to find a specialist doctor qualified to assess people on whether they have ADHD (or possibly something else). One of the unfortunate side effects of Mental Health services is that financial status is often the deciding factor in accessibility.

The only reason I can afford to have therapy sessions for my increasingly unstable anxiety and my pursuit of an ADHD diagnosis is because I have a partner who is willing to support me, he earns a decent wage and we have some savings set aside.

It’s funny just how big a factor money really is in gaining the mental health support services one may require, and by funny, I mean fucking awful. The sheer cost factor was one of the many reasons why I hesitated to pursue an ADHD in the first place, that and, because of my past bad experiences with bad/incompetent doctors, trust is a big factor.

How do I know this person is qualified? What’s their range of experience? Do they have experience with Adult diagnosis? Do they have experience diagnosing Adult Women? And the most terrifying question of all: What if I don’t have ADHD? What if I’ve just been slightly dysfunctional the whole time, and I’ve just been wasting all this time and money for nothing?

Whenever I was given a referral letter to a specialist, I made the effort to google search and attempt to find as much information about these “specialists” as possible. Unfortunately, the clear majority of specialists regarding ADHD are male doctors. I regard this as a bad sign, especially considering the shitty attitude some people and the medical industry have towards Neurodiversity and people who aren’t white cis-boys.

It was why I was so happy when my local GP found a female doctor in Ballarat who stated she was qualified for Adult diagnosis for ADHD and Autism, unfortunately one of the downsides was I would be waiting a minimum of two months before I could see her.

Another downside is that each hourly session was $400, however, I did some research on her, found positive comments, noticed she had a minimal internet presence (a website with a photo and brief bio) and I booked an appointment, expecting the worst but hoping for the best.

I had previously tried to contact a male specialist and due to the rudeness of the receptionist, I never bothered to book an appointment, I figured if you’re that rude to a paying customer, clearly that specialist doesn’t need my money (sad part is that it’s probably true).

But when I contacted Ballarat Psychiatry Group, the receptionist was super nice and very helpful with my inquiries. If you work in the mental health industry, don’t be an arsehole to people over the phone, the people calling up clearly have enough problems to deal with, I can’t stress this enough.

And then the waiting began…

In the almost three months prior to my appointment, I figured it would beneficial to do as much research as possible, print out things to give to the specialist in a bid to minimise the wastage of time. To maintain a vague illusion of organisation, I purchased a specifically set aside compendium-folder (bright pink of course) so that I could keep all my “Mental Health Stuff” all in the one place.

In my view, I had only an hour to distil twenty-eight-years’ worth of dysfunction, I did not have high hopes for this, especially since in therapy sessions I tend to go off on unrelated side notes and forget what I was even talking about in the first place. To try and combat this, I made sure to take lined paper and pens with me, so that I could take notes or make dot-points before the session.

When I went into the doctor’s office for my appointment, she began with the usual scripted dialogue people with when meeting for the first time:
“Hi, how are you?”

I responded with “Fine” automatically, because that is what we are taught to say, we are taught to say we are fine even when we are not (especially when we are not), “fine” is the only socially acceptable answer. Then I reminded myself that I wasn’t paying $400 an hour to be “fine”.

I corrected myself, “Well no, I’m not fine, I wouldn’t be here if I were. I’m inquiring into an Adult Diagnosis of ADHD, I’ve done all this research,” I handed over a bright pink A4 sized document-wallet filled with documents. “And I thought we could start there.”

The fact that she discarded the document-wallet pretty much as soon as I gave it to her was a bad sign to me, however, it was the expression of bored disdain that irritated me (and continues to irritate me whenever I think about it, yes, I’ll admit it, I’m at times terribly petty).

It turns out she’s not qualified at all to assess people on whether they have ADHD (even though it says so on multiple internet resources). Apparently, she primarily dealt with patients who came to her looking for help with ADHD, but it turns out they don’t have ADHD, they just have Anxiety or Depression. Personally, I feel that’s a weird kind of specialisation to have, I mean, what would she do if she came across a person who had Depression and Anxiety but also had ADHD as well?

Anyway, I was offered two choices, choice A was she could email a referral letter to my local GP doctor, and then I would have to book an appointment with my local GP and obtain the referral letter via my GP (the Ballarat doctor couldn’t just print out a referral letter then and there and give to me). Choice B was that I continue with the appointment and she would attempt a paper-form of assessment over multiple sessions and then refer me onto a specialist.

My thought process was that a person who isn’t qualified to assess me is going to ask me questions (if she’s not qualified, how can I trust that she’ll ask the right questions?), over multiple sessions (3 x $400 = $1200) and even at the end of that, I still wouldn’t have a definitive answer because at the end, she’d still have to refer me to a specialist.

So that would be at least three appointments with her and an appointment with an actual qualified specialist (for the sake of argument, let’s assume the qualified specialist charges at the same rate), so that’s $1600 worth of appointments with no guaranteed answers. I’ll admit my first knee-jerk reaction was “shove that up your arse” but somehow, I managed to contain my frustration and annoyance at having my time wasted, although I’m sure my emotional state was probably obvious.

I chose to cancel the appointment and deal with the ADHD specialists directly (or as directly as I could).

I was ranting to my councillor about this and she gave me the suggestion of contacting the RMIT Psychology Clinic and encouraged me to inquire if they had the ability to perform an Adult ADHD assessment.

My councillor informed me that the doctor seeing me would be a graduate doctor (with a senior doctor to supervise) which was why the session would be cheaper. So, I decided to check this out first, and keep the ADHD specialist referral letters for later, in case the RMIT thing doesn’t work out.

Unfortunately, and perhaps this is only me, but I found the website confusing and vague so I’ll try to add more information.

Without a concession card, the doctor session will cost AU $30 and the Assessment Report will cost AU $100 (plus the cost of petrol and possibly parking, IDK, the place is located in Bundoora), however, I want to point out that if you have a concession card, fees and such will be cheaper for you, I can’t say specifically because it will depend on what you’re pursuing the clinic for (the website does have some information about fees, I just didn’t find it clear enough for me).

You will need a referral letter from a GP to gain access to the service. My GP didn’t know about this service (Latrobe University also has a psychology clinic as well in case that university is closer) and, as a result, the RMIT Psychology Clinic has been added to the database my local medical centre maintains for services like these, so hopefully this will help other people too.

When I contacted them, it did involve a bit of fluffing about (a short time on hold while they found the right department/right doctor to speak to, standard university stuff really), but my assigned doctor got back to me within an acceptable time frame and I’ve only had to wait a couple of weeks before I could get an appointment.

Like with all good deals that seem too good to be true, there is a catch, one of the conditions of gaining access to a cheaper assessment is that my appointment will be recorded for training purposes. Apparently, according to the doctor I’ll be seeing for my appointment, a lot of people don’t engage with the service because of this, which is why I’ve made sure to mention it directly.

I’ll be going for my appointment with the RMIT Psychology Clinic next Wednesday and my thought process on this is that perhaps it’s a good thing a recording of my appointment will exist, hopefully it can be used as evidence to help support other people like myself.

Although I don’t have high hopes at this point, I must test out my options, even if this is simply a process of elimination. I’ll ask if I can receive a copy of the recording. I should be able to under the Freedom of Information act.

Speaking off obtaining information, I’ve also been investigating into getting a copy of my records from my forced attendance at Orygen Youth Health, now I wasn’t forced to go there because of a court mandate.

The doctors involved with Orygen Youth Health just repeatedly told me I had to go to appointments and I couldn’t leave the program until I was a legal adult. As an adult, this comes across as “that might not be technically illegal, but definitely sounds unethical” category.

Making a traumatised teenager feel as though they have no choice but to attend therapy sessions with a doctor who won’t listen and keeping said traumatised teenager ignorant of their medical rights belongs in the “Dodgy as Fuck” category.

But then again, the Orygen Youth Service was free for me to access because my mother and I had concession cards, so maybe this is more of a “you get what you pay for” type of situation (not that it makes what they did okay).

I began investigating my Orygen Youth Service medical records back in December and still haven’t received my records, but my thought process was that “What the hell was that Doctor thinking?” and then I needed to know the exact answer to that question, or at least the closest approximation I’ll be able to obtain.

I also thought as I’m not doing my assessment through the education system (not by choice I may add) it may be beneficial to obtain “official” medical documents and see if they can help my cause. Although, I have strong doubts about this.

If you’re in a position where you’re able to pursue a diagnosis for a Neurodiversity condition through the educated system, I encourage you to do this, Doctors are like University Admins, they require an almost bureaucratic level of paper-work to justify you getting an appointment.

I just wanted to add thanks if you managed to get this far through the post, I know it’s absurdly long, especially since it’s a super long post about how not much progress has been made, hopefully next Wednesday will put me in better position and I’ll know where to go from there.

The Dysfunction Junction ~ An Introduction

Image Description: a large cluster of smiley faces in the centre of the picture. In the background are words like breath, here & now, accept, track, sense repeatedly printed in the background over and over again.
Image Description: a large cluster of smiley faces in the centre of the picture. In the background are words like breath, here & now, accept, track, sense repeatedly printed in the background over and over again.

Welcome to The Dysfunction Junction, a series of blog-posts I am going to write as I try to figure out whether or not I have ADHD or if I am just Weird. Now, I know some people will object to my use of the term Weird, but as I have spent my entire life being made to feel Less because I am Different, I think at this stage I’m entitled to reclaim Weird and Crazy if it so pleases me. Especially since every time I try to figure out what that precise Difference is exactly, I have been (and continue to be) denied access to a label and a diagnosis, and therefore to services that could potentially help me handle my Dysfunction.

Instead, I am left with labels like Weird, Crazy, Freak and Broken by default. But I am not Broken, I am not Less, and recently Kim gave me another word, a glorious inclusive word that matches me, and that word was Neurodivergent. It was in a Tumblr post, but unfortunately, I cannot find the direct quote (I have been looking through Stim Toy posts trying to find it) so I will be paraphrasing here, but it was essentially along the lines of:

“From what you’ve told me about your experiences in general and your experiences with mental health, you’re not Neurotypical, you definitely sound Neurodivergent, and you’re welcome to play in our sand box.”

It will sound silly, but I almost began crying when I read Kim’s response, I was so happy not just because of Kim’s acceptance but for the underlying message of “it’s okay, I see you, and you don’t have to pretend to be normal.” Because for most of my life I have been trying and mostly failing to adhere to the role of “Normal Person” without a script. I am not “normal” or Neurotypical, I never will be, so naturally I keep failing and beating myself up about it (if everyone else can do it, why can’t I?), although my failures as an adult are small and possibly dismissive in comparison to the failures I committed as a child and teenager. I have learned how to blend or appear “normal enough” by rote, not because it comes naturally to me, socialising and interacting with other people is hard work for me.

I am trying to change my current situation by pursuing an Adult Diagnosis of ADHD, but until I get a Yay or a Nay, I’m kind of stuck in this state of Purgatory. I can’t move forward with possible treatment (more on this in a later post) and I can’t go back to pretending I don’t have a problem. I recognise I have a problem, some of my closest friends and family are willing to recognise I have a problem, but because in the past certain doctors have refused to recognise I have a problem, I can’t get the appropriate help I need now without a diagnosis.

These posts are not to function as a self-hosted Pity Party, but rather to act as a guide for other people who might be considering the same type of options as I am. But as I live in Australia, I have limited access of Australian doctors qualified to assess Adults with ADHD, and the Australian Medicare System also limits me, my approach will be primarily Australian-orientated (just in case that wasn’t obvious).

But I would also like to mention up front that the diagnostic criterion for an Adult with ADHD is similar to an Adult with Autism or Adults belonging to the Autism Spectrum. While I don’t think I have Autism, I can’t deny the possibility that I could be Autistic instead of having ADHD, although I think it’s unlikely. There is also the possibility of having both ADHD and Autism, although I think this also unlikely, if I had both, surely someone would have noticed or said something before now (maybe? I think? At this point I really don’t know anymore), however, having said that, I have often found resources or articles for people with Autism to be helpful for me.

Concerning Autism and ADHD support groups, there is a lot of focus on international organisations like The National Society of Autism (located in the UK) and Global and Regional Asperger Syndrome Partnership (GRASP) (which is predominantly located in the USA). I’m sure both these groups do amazing things for Neurodivergent people in their respective counties, but their helpfulness is limited in international situations like mine.

Amaze (formerly known as Autism Victoria) doesn’t get nearly the same amount of attention as GRASP or The National Society of Autism, although Amaze does produce a magazine The Spectrum (if anyone is interested in contributing to it). I have found that Wrong Planet and Autism Women’s Network are more internationally friendly or more internationally appropriate.

On the ADHD front, I found valuable articles and resources at ADDitude Magazine, but for something more Australian orientated, I have also found this website Every Day with ADHD which has resources for parents and children for different states in Australia but also in New Zealand.

While I’ve been able to find Australian support groups and online support groups for transgender people (this post has a list of resources), I haven’t been able to find an organisation or support group for transgender people who also have Autism or ADHD. If anyone knows about transgender-focused support groups for Autism or ADHD, please leave me a link in the comment section, I would be happy to add the link/s into the post.

The key objective here is to help and to inform, so at this point I want to add the obvious disclaimer that I am not a qualified or experienced medical professional. I cannot and will not offer a diagnosis for Autism or ADHD, however, I will add resource links at the bottom of the page, and what you do with them is completely up to you. If someone out there stumbles across my blog and finds this helpful, then great, otherwise this is just going to be me ranting about how messed up the Australian Medicare System is and just how lacking the Mental Health services available in Australia are.

Links:
~ADDitude Magazine – Home

~ADDitude Magazine – Self-tests and Quizzes

~ADDitude Magazine: The Truth About ADHD in Women

~Decades of failing to recognize ADHD in girls has created a “lost generation” of women by Jenny Anderson

~ADD on my mind: diagnosing attention deficit disorder in adults by Yasmin Noone

~So Much Stranger, So Much Darker, So Much Madder, So Much Better: Autism with a side of ADHD

~The link between autism and trans identity By Bryony White

~Autism Self Advocacy Network (ASAN)

~Autistic Self-Advocacy Network, LGBT Groups Release Statement on Needs of Trans Autistic People

~The Chameleons: women with autism | The Feed SBS (YouTube Video)

~Different As Pie: So You Think You Have Asperger Syndrome? (Youtube Video)

~Musings of an Aspie: Aspie Tests

~Nerdy, Shy and Socially Inappropriate: A User Guide to an Asperger Life by Cynthia Kim

~Aspergirls: Empowering Females with Asperger Syndrome by Rudy Simone

~Bitter Autistic (Tumblr): a collection of quizzes and other tools to help with self diagnosis as well as tips and tricks for ADHD

~Bitter Autistic (Tumblr): NOT SO COMMONLY TALKED ABOUT/ATYPICAL AUTISM TRAITS