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 Diverse Books Reading Challenge 2017: The Devil Is In The Details

Image Description: a title page with the words Diverse Books Reading Challenge 2017: The Devil Is In The Details in rainbow coloured word-art with four red roses in each corner Image Description: a title page with the words Diverse Books Reading Challenge 2017: The Devil Is In The Details in rainbow coloured word-art with four red roses in each corner

One of my biggest struggles with academia was that my essays were perfectly clear to me, the reasoning and structure of the article was obvious. It turns out, this is usually never the case, it usually always turns out to be that that my essays only make sense to me. So, my apologies if my previous instructions seemed confusing and difficult to follow.

I have a great love for the movie Nightmare Before Christmas and I also have a strong emotional connection to Jack Skellington: a being with the enthusiasm of a thousand passionate actors but the common sense of a wet cabbage. I’m so eager to begin a project, I forget the finer details required. This post will hopefully flesh out the Terms and Conditions in greater detail, however, please contact me if there is any need for further clarification.

How To Review

In order to meet the Minimum Standard of Review, participants need to include the following:
-A star rating from DNF (did not finish), 1 star, 2 stars, 3 stars, 4 stars and 5 stars.
-One aspect of the book the reader liked
-One aspect of the book the reader didn’t like or thought could be improved
-Answer the question of “Would you recommend this book to others?”

In order to meet the Maximum Standard of Review
-A star rating from DNF (did not finish), 1 star, 2 stars, 3 stars, 4 stars and 5 stars.
-Three aspects of the book the reader liked
-Three aspects of the book the reader didn’t like or thought could be improved
– Answer the question of “Would you recommend this book to others?”

Pictures and gifs can be used in place of words in a review. Participants can also make video reviews and just talk about the book (maximum video length 10 minutes or under), participants will have to provide a hyperlink to the video. Participants can also make audio recordings of their review (maximum audio track length of 10 minutes or under), participants will have to provide a hyperlink to the audio-recording. If participants have an alternative method of reviewing that I have not mentioned, please feel free to contact me and discuss this alternative method with me. My email is brkyle(dot)author(at)gmail(dot)com

The participant then publishes the review either on their social media platform of choice or goodreads.com, they will then click on the little blue-frog icon below

The blue frog will lead to a separate page where participants will be able to add their link to their review.

Books

Any physical format is acceptable, any format of electronic books (for example: epub, pdf, mobi) is acceptable, the main objective here is to connect the potential reader with the author, so if the review is positive and you want to recommend the book to others, you need to leave a hyperlink that allows people to access the book.

When it comes to purchasing physical books, I tend to recommend purchasing via through Book Depository because they offer free delivery to Australia, but I understand that this might not work for everyone, especially for Indie Authors. Kim raised valid points about accessibility and as along as the potential reader can access the book, that’s what counts.

Due to the complexity surrounding Fanfiction, I will have to exclude Fanfiction as reading material for this giveaway (perhaps I will reconsider this for the next giveaway, but not for this one).

What kind of Disability theme/structure am I looking for in a book?

My personal approach to reading Diverse Books is to look at the genre of the book first, then I consider the Diversity element. I don’t want to read books just for the sake of Diversity, if I do that, I’m going to struggle and argue with myself (“I must finish this book, it has diverse characters in it!” “But it’s so boring!”). I like Diversity Books that have the main characters doing things other protagonists do. Disabled people are just like everyone else and the narrative should reflect that.

Kim also offered some good advice:
“I’d actually look at determining what is and isn’t disability fiction via protagonist: if it features a narrating protagonist disabled in some way, it counts. If if doesn’t and is therefore about The Abled Person’s experience, no. Of course, you’ll get stuff that isn’t written by folk with disabilities and is written awfully – *cough*Garth Nix*cough* but the job of a reviewer is to read that and mark it so others don’t, not to read only great representation.”

So, how I verify that I’m reading a book about Disability that meets that criteria?

Well I’m not sure if I can answer that in a definitive way. Unfortunately it’s difficult to determine what type of disability a book is about (Side Note To Authors: Mention the disability you’re writing about directly in the blurb, I’ve had to spend a considerable amount of time reading through reviews to determine which disability a book is about, I shouldn’t have to do that) let alone make sure a disabled person is the main protagonist.

To be honest, I think that the most I can do is make a list of books, list what type of Disability is featured and let people decide if they’re interested or not. I’ve done some researching and I found out that Corinne Duyvis (one of the founders of Disability in Kidlit) has a Goodreads account and a Bookshelf dedicated to books with Disabled Main Characters:

~Corinne Duyvis’s Bookshelf: Disabled Main Characters

So, I used this bookshelf, as well as some recommendations from other book blogs, to make these two Goodreads Bookshelves:

~B.R. Kyle’s Bookshelf: Disability

~B.R. Kyle’s Bookshelf: Mental Health

Now, unfortunately, I haven’t been able to verify all of the books on the Bookshelves via Disability in Kidlit’s reviews and honor roll and I also haven’t read a lot of them myself. There is also a lot of the books on the bookshelf that are classified as belonging to the Young Adult genre, which might not suit everyone, so I’ve tried to balance out the Young Adult novels with Adult Memoirs, but there’s not much else I can do.

Please check out the links and see if those books work for you, but it’s okay if they don’t or you already have your own book list organised. I’ve spent the majority of today and yesterday working a list of books about disability that have been given the Disability in Kidlit Seal of Approval (if people would like to make suggestions, please do so in the comments section below):

Six of Crows by Leigh Bardugo
Category: Disability and Own voices
Disability in Kidlit Review

A Time to Dance by Padma Venkatraman
Category: Disability (amputee) and POC main character
Disability in Kidlit Review

Otherbound by Corinne Duyvis
Category: Disability and Own voices
Disability in Kidlit Review

On The Edge of Gone by Corinne Duyvis
Category: Disability and Own voices
Disability in Kidlit Review

Far From You by Tess Sharpe
Category: Disability (Chronic pain and mobility issues) and GSM
Disability in Kidlit Review

Me and Earl and the Dying Girl by Jesse Andrews
Category: Disability (cancer) and mental illness
Disability in Kidlit Review

What I Couldn’t Tell You by Faye Bird
Category: Disability (selective mutism)
Disability in Kidlit Review

Reaching for Sun by Tracie Vaughn Zimmer
Category: Disability (cerebral palsy),
Disability in Kidlit Review

The Elementals by Saundra Mitchell
Category: Disability (One MC is recovering from Polio)
Disability in Kidlit

When Reason Breaks by Cindy L. Rodriguez
Category: Mental Health (Depression and Suicide)
Disability in Kidlit Review

Two Girls Staring at the Ceiling by Lucy Frank
Category: Disability and Mental health
Disability in Kidlit Review

Evidence of Things Not Seen by Lindsey Lane
Category: Disability (Autistic MC)
Disability in Kidlit Review

Don’t Touch by Rachel M. Wilson
Category: Disability and Mental health (OCD)
Disability in Kidlit Review

Five Flavors of Dumb by Anthony John
Category: Disability (Deaf MC)
Disability in Kidlit Review

Blind Spot by Laura Ellen
Category: Disability (Blindness) and Own Voices
Finding Yourself in a Book: Why I Wrote Blind Spot by Laura Ellen

You Look Different in Real Life by Jennifer Castle
Category: Disability (Autistic MC)
Disability in Kidlit Review

The Rest of Us Just Live Here by Patrick Ness
Category: Disability and mental health (OCD and Social Anxiety)
Disability in Kidlit Review

When We Collided by Emery Lord
Category: Disability and Mental health (Bi-polar)
Disability in Kidlit Review

Autism Goes to School by Sharon A. Mitchell
Category: Disability (Autistic characters)
L.C. Reviews: Autism Goes to School (YouTube video)

Diverse Books Reading Challenge 2017 – Disability Booklist (PDF)

Diverse Books Reading Challenge 2017 – Disability Booklist (Word Document)

I know that’s probably considered a short list, but I figured it was a good starting point, these are meant to be guidelines and I don’t want to overwhelm people. I also don’t want to start going into “English teacher territory” of telling people what they should and shouldn’t read, however, these are reviews written by disabled people, with disabled people talking about books written about their specific disability, and I think their judgement of what constitutes as acceptable representation is the standard the publishing industry needs to aiming for.