Episode 7 How to get a diagnosis in Australia. Part 1

Jane McFadden:

Hello and welcome to the ADHD Mums Podcast. I’m your host Jane and I’m here to make sure you know you are not alone. This is a safe place where we can talk openly about our struggles with having ADHD, being a mum and dealing with life a little outside the box. We are real people with real stories who want to be able to laugh and strive to be better than what we were yesterday. My name is Jane McFadden and I’m a 36 year old mum of three who was diagnosed with ADHD a little over a year ago. I’m here to help you live out your full potential with a diagnosis or without one.

On this show you can expect to laugh, hear vulnerable discussions and learn why things are the way they are for mums with ADHD. No two humans are the same, no two diagnoses are the same and no two stories are the same. We have a lot to learn and a whole lot to look forward to on this podcast.

One of the most asked questions I get in my inbox at the moment is how in Australia can I receive a diagnosis? Women are sending me messages saying I’ve been turned away from my GP, I’ve done the checklist online, my child is diagnosed, how was that so easy? But yet I’ve been left out again. No one seems to believe me and I don’t know what else to do. Wait lists are extremely long in the public system and there’s a feeling of anxiety around not being believed, being told it’s all in your head.

Women are stating that they feel nervous and feeling like they want to understand how to best prepare for the appointment because they’ve been waiting for so long. So who better to bring in than someone who specialises in this area? Introducing Jacinta Thompson who is a clinical psychologist who has a PhD in clinical neuropsychology. Jacinta runs her own private practice called Time to Untangle based in Maroochydore and via Telehealth. She’s very passionate about supporting adults from their early stages of querying their neurodivergence to providing formal diagnostic evaluations and reports and supporting them through their strength-based therapy and coaching. She has a special interest in supporting adults with ADHD and autism and especially women and people who are more internalising or high masking subtypes.

Jacinta and her husband have two kids under four and a beautiful dog. She’s clearly a high energy individual. She represented at national and international levels in swimming, water polo and outrigging canoeing. She loves snow skiing, has spent wild winter seasons ski bumming all over Canada and France. She met her husband during one of these seasons and they have been fortunate to travel to over 35 countries together in the last decade. In her free time or lack of it we should say, she enjoys watching trashy reality TV, making earrings and categorising her kids giant collection of My Little Ponies by colour, size, generation and cutie marks. Jacinta would have to be one of the most high energy and accomplished people which shows the beautiful success that ADHD women can have and the energy has really transcribed into life experience.

So I welcome Jacinta.

Dr. Jacinta Thomson:

Thanks Jane, it’s really nice to be here. This has been something I’ve been excited to do and join you today. So Jacinta, let’s answer one of the biggest questions that I’ve been getting at the moment. How in Australia can I receive a diagnosis?

I want to acknowledge from both my lived experience and position as a health professional specialising in this space that seeking an ADHD diagnosis as an adult can feel like a really vulnerable experience. You know, notwithstanding the difficulties of just accessing an ADHD specialist for an evaluation, it can actually be really hard, it’s really exposing to ask for help.

I think a lot of us, you know, we live our lives trying to hide our insecurities and then we have to feel like we’ve got to, you know, sort of air quotes, we’ve got to prove that we have this problem or this struggle behind the scenes. I think as a mum, you know, we’re expected not just to have our own adult lives perfectly organised and neatly scheduled, but also our kids’ lives. I think in, at least in my family, if we get, you know, invited somewhere or if there’s, you know, like a holiday we want to plan for, my husband always deflects the decisions and the planning to me.

It’s a bit of a joke in our family, but he calls me the minister for war and finance and I think he’s referring to the implicit fact that I carry all of the responsibility for planning, coordinating our family’s activities and, you know, making sure our weekly routine runs to plan and ensuring everyone’s daily needs are met, including the dog. You know, he will help in any way that I ask him, but I think, again, it’s sort of like this cultural expectation that mums carry that load and that’s really hard, especially for an ADHD mum. So it feels like a full-time job just to keep the wheels turning for the family and then we’re supposed to go to work, run errands, organise medical and dental appointments, take care of extended family and even keep up with study whilst looking like we’ve got our stuff together.

I think you said it in a previous episode. For the little girl with inattentive symptoms whose diagnosis of ADHD gets missed because she’s naturally bright and polite and she doesn’t look like the hyperactive and disruptive boys that are more readily identified in the classroom. Well, she turns into a woman and a mum who is highly skilled at masking or hiding her neurodivergence from the world, but the world doesn’t see how much she’s struggling behind the scenes to keep those wheels turning and Jane, I think you and I can relate.

You know, she’s exhausted, she might be anxious or depressed, she’s wondering what she’s doing so wrong for life to be this hard. She’s worried that if she questions ADHD to her doctor she’ll be dismissed. How humiliating. This fear just fuels the imposter syndrome, convincing her that she’s reaching for ADHD as an excuse for just being lazy, stupid or scattered. We’ve all heard those. That she just needs to try harder and be better… But ADHD is not an excuse, it’s an explanation.

I like your previous episode, Jane, on untangling sort of the two of those and I think getting a diagnosis is a really helpful way of being able to build that self-understanding and self-compassion and really understand that, you know, if we can learn all about our neurotype and how our ADHD brain functions best in the world then we can use it as an explanation and it’s a really helpful one at that. But it is important to connect with a good specialist or a team of specialists who are neuroaffirming and experienced with internalising or highly masked variants of adult ADHD.

Jane McFadden:

So Jacinta, I feel like you’ve just spoken to every woman on this podcast and a lot of the inboxes that I get in terms of being highly masked or internalising symptoms and it’s one of the largest battles I’ve had with the last school that my daughter was at where they had no understanding of what that was. She looked okay and they actually gaslit me and emailed me back to say that she looked fine and they thought I was the one that had the issue. So I’d love to know more about what exactly it is that you mean by internalising or highly masked variants of adult ADHD.

Dr. Jacinta Thomson:

Yeah, that’s a great question. I think one of the problems with our medicalised and pathologised model of diagnosing ADHD which comes from the DSM or the Diagnostic and Statistical Manual of Mental Disorders, the way that we diagnose ADHD is really via looking for behavioural markers of impairments and those impairments that might be the result of problems with regulating attention, energy, motivation and so forth. So we’re really looking for what are the disabilities that this person presents with on the outside, in what way do these struggles and these symptoms impact their everyday life.

Now, that’s all well and good for sort of catching and diagnosing and supporting people who might be running all over the room, you know, unable to sit at their office desk or in kids, those stereotypical little boys who are disrupting their classmates and sort of can’t finish their homework and so forth. But for people with primarily inattentive symptoms or even those who compensate for their ADHD traits through either a strong intelligence or really sophisticated coping mechanisms or compensatory strategies, often their sort of outward performance or their behaviour doesn’t differ too much from neurotypicals. So an example of a masking strategy for me in my life is a really, really rigid and strong reliance on those reminders in my phone calendar system.

And again, you’ve talked about this in a previous episode, Jane, can definitely relate to everything needs to be in that organisational system for me to remember it. If it’s not in there, it’s like it doesn’t exist and it definitely won’t happen. Because I use that strategy in terms of the calendar and the reminder system really rigidly, really consistently, it works really well for me.

So from an outsider’s perspective, they might not actually see how hard it is for me to remember all the things that I need to do. They don’t know all that effort I put into using that organisational strategy in my everyday life to keep the wheels turning. So from that outsider’s point of view, I don’t look or perform particularly different from what we might expect neurotypicals to…. But behind the scenes, there are a lot of effortful and cognitively and emotionally taxing strategies that I need to have in place really consistently to do the things that I want to do.

Jane McFadden:

I just love what you said there, because I think for me, one of the best and best luck things that have happened to me was when I went and saw that psychologist and he identified that I was using a lot of prompting. Because when we went through the questionnaire, I said to him, oh no, I’m always here on time.

Oh no, I’m highly efficient. But it was only because he’d seen the notes in my phone that I wrote down that he could see the complex system. And it was only because he would see the reminders popping up constantly in the sessions.

He’d be like, what’s going on with your phone? But I actually didn’t realise because I’d been doing that for my entire life in various, you know, your school diary, I’d have complex systems, but I always came off looking efficient. And I think actually seeing what it takes for someone to achieve these normal, and I hate using the normal word, but I have to use it again, these normal things, like turning up to an appointment, that’s such a difficult thing to diagnose, to really see that. And that’s why I think it’s important if you’re looking for a diagnosis to try and connect with a psychologist or a psychiatrist who is aware of these more hidden or highly masked characteristics of ADHD.

One of the ways that I try to assess for these internalising characteristics is to ask the questions in the form of, if you weren’t able to use this complex system or organisational strategy, what would your life look like? Would you be able to remember those things in your own working memory without any prompts, without any help, without any reminders? It’s sort of like a house of cards. I think for ADHDers and particularly ADHD mums, everything is really delicately stacked on organisational strategy and, you know, memory queue and prompting and reminders. Everything is really contingent upon those tools working in the way that you need them to.

And as soon as one thing sort of falls apart, then we often see this big collapse. Those wheels fall off, not just for the person themselves, but if they’re responsible for, you know, like me, apparently the Minister of War and Finance for the family, then everything, you know, is really impacted for the other people in my household. So really important that if you’re looking at getting an assessment that someone’s trying to look beneath just that external presentation, which might be someone who, in inverted commas, looks like they’ve got their, you know, their life together really, really neatly and really efficiently.

But actually there is so much work and effort and, you know, exhaustion that goes into keeping that house of cards together.

Dr. Jacinta Thomson:

Yeah, absolutely. And then that goes back to the misdiagnosis of depression, anxiety, and it all of, you know, I had a bit of a joke with Lucy, who we did a hyper focus on, about how I could see how she would have possibly, and not that she was, been diagnosed with bipolar, like a manic episode, because she was so hyper focused on building her business…

So Jacinta, if someone was listening to this podcast and they were like, I’m just identifying really hard with everything that Jacinta and Jane are talking about, what are the current pathways in Australia to get a diagnosis?

This can be tricky. We have arguably one of the best healthcare systems in the developed world, yet there are still some serious accessibility problems. In Australia, there aren’t really any public options for adults looking to pursue a diagnostic evaluation for ADHD.

So long story short is that you’re probably going to have to pay, and it’s not cheap. A good place to start is connecting with a clinical psychologist who has experience in this space, and especially experience with, like we said, those internalizing or more highly masked characteristics of ADHD. You don’t actually need a GP referral to see a psychologist for an assessment.

You can actually self-refer. So just do some Googling and reach out and get a sense of who’s in your area if you want a face-to-face appointment, or if you’re happy to do telehealth, then obviously there’s lots more options available to you. So you don’t need that GP referral because Medicare rebates don’t apply for a diagnostic assessment of ADHD.

If money is your biggest barrier to an assessment, then I recommend reaching out to your nearest university and seeing if they have a psychology clinic run by master students that offer discounted cognitive testing. Some private practices will have more cost-effective rates if you’re happy to go through the process with a provisional psychologist, which is someone who is completing their final stages of tertiary qualification, and they’ll always be overseen by an experienced psychologist.

If your primary goal is to try medication to see if that helps with your ADHD symptoms, then I suggest you speak with your GP and ask for a referral to a psychiatrist. In Australia, you will need a psychiatrist or a pediatrician if you’re a younger adult or adolescent. Psychiatrists or a pediatrician need to initiate your first prescription as psychostimulants are highly controlled substances.

Jane McFadden:

Okay, excellent Jacinta. I think that’s great information. A lot of other people also want to know, who do I see first if I want to learn all about my neurospicy brain and trial medication and which pathway is cheaper?

In my experience, adults in the community are waiting about 6 to 12 months, sometimes longer, for an appointment with a psychiatrist. The wait lists are huge and it can be tricky to actually find a psychiatrist who even has open books.

So be prepared to call around and you might need to join a few psychiatrists waiting lists just to see who calls you up first. So some psychiatrists will meet you for that first intake appointment and they will do their own diagnostic evaluation with you over a few sessions before they clarify that diagnosis and start a medication trial.

To see a psychiatrist, you’re looking at around $500 to $700 per appointment, although you’ll get some rebate back from Medicare with a GP referral. And if you’ve already reached your Medicare safety net for the year, then those rebates will be… higher.

The problem is that most psychiatrists don’t have time to do these comprehensive evaluations, so they might meet you for that first session and then refer you to go and see a like myself for a diagnostic evaluation and report.

The lead time for an ADHD assessment with a clinical psychologist is roughly three to six months at the moment and these evaluations, they generally cost between about $1,500 and $2,500.

So to avoid having to go back and forth between the two professionals, I usually recommend that people book themselves in with a psychologist to go through that diagnostic assessment and report process. And then in the meantime, speak with their GP about getting a referral to a psychiatrist as well.

Then whilst you’re waiting for the psychiatrist appointment, you’ll hopefully get to go through that affirming assessment and learn all about the nuances of your neuro-spicy brain and what it needs to function at its best. So then you should be ready with the report by the time that psychiatrist appointment rolls around.

I know for my clients who take my reports to their psychiatrist, a specialist are usually confident with my diagnosis and happy to press on with a medication trial if that is indicated.

All going well, your psychiatrist will probably want to see newly diagnosed ADHDers for at least two or three more sessions to monitor your response to medication and fine-tune the dosage. Usually these review sessions are a little bit cheaper than the first session or the assessment sessions that a psychiatrist might charge for.

Once a psychiatrist is happy with your response to medication, they will typically then refer you back to the GP for the GP to continue with prescribing the medication for you.

There are some tele-psychiatry clinics that offer online ADHD assessments. You can do some googling to see what’s out there and I noticed that some of them say they have availability within six weeks. I can’t vouch for how neuro-affirming these psychiatrists are, but if you want the quickest path possible, then maybe speak with your GP about getting a referral to a tele-health psychiatrist.

But just double check. There are some different state-based rules and regulations about whether a psychiatrist who is based in a different state in Australia can prescribe you psychostimulant medication. So that’s probably a conversation that’s best to nut out with your GP, or you can even call the admin of the tele-psychiatrist practice and see if they can give you some more direction.

If you go to ADHD Support Australia website, there is a directory for psychiatrists around Australia that offer ADHD services. Again, I can’t guarantee they’re all neuro-affirming and experienced with internalizing subtypes, but just do your research, even ask around. There are quite a few online communities. It’s always good to get a word of mouth or a personal recommendation if you can.

Dr. Jacinta Thomson:

Excellent. I think you’ve made some great points there, Jacinta. Particularly around, you said similar to what my psychologist said…. He said there’s two ways to do it, because we just did a very short questionnaire. And he said you can either go to someone in person and have a full assessment and do everything completely correctly and get it all written down. They check your background, they check your school reports, or if you’re a little impatient, as a lot of us would identify with, I was pretty keen to try some medication when I realized that I could possibly feel better than what I was feeling at the time.

And I was feeling pretty rock bottom. So for me, I did go with a telehealth psychiatry company. I absolutely agree with what you’re saying.

I wouldn’t say it was neuro-affirming. I wouldn’t say it was the best experience of my entire life or the best customer service. However, it got the job done and I received what I was looking for and I suppose the end result was okay.

That was quite quick as well. However, that’s not for everybody and I was quite experienced because my dad and my brother had already been diagnosed. So for me, I think the telehealth did work okay.

But I think for some people, you could be off put by the manner, the way you’re spoken to. But for me, I was pretty robust in what I said and I was able to get through my points. But I can see that if you weren’t firm and you are unsure, possibly that might not be the right pathway.

So I do think that’s an important point to mention and seeing a clinical psychologist to really go through what you’re using as prompts, if you’re masking and really look at the way you’re behaving and what traits you can change, what structures you can put behind yourself. And using that therapy, I think is really important. However, for people out there who are just desperate to try some medication for a quick fix, I think that does have its place.

Jane McFadden:

Okay. So Jacinta, what are some things you can do to prepare for the appointment? Because we know that the people in this podcast are going to be probably nervous, high anxiety. Let’s say they’ve waited the whole year and maybe they do have a life that looks on the outside okay. Maybe they’ve got family or friends that are kind of saying to them, oh, I don’t think you even got that. What a waste of time paying all that money. What would be some things that they could do to prepare?

Dr. Jacinta Thomson:

It’s a great point. And I think this comes back to that imposter syndrome where a lot of moms or even adults that come to see me for an assessment, they often come in almost embarrassed or sort of sheepish with having done their own research and even having some documentation put together on how they identify with ADHD characteristics and even their masking sort of traits. And I’m so encouraging of people doing that research and starting from a place of self-identification or self-diagnosis. It’s really important that people build their self-understanding and advocate for themselves.

It takes, like you say, it takes a robustness to step into such a vulnerable arena to pursue a formalized diagnosis. So I think do some research. If it starts with ticked up videos and following Instagram accounts and then it’s YouTube videos and it’s books and it’s other podcasts or it’s this podcast and you’re starting to think more and more, this describes me and maybe I do need some more help.

Maybe I do need to formalize my thoughts and formalize this diagnosis and talk to someone who really knows how I can sort of improve my functioning with living with ADHD.

So I think do your research, do some online quizzes. There’s a great website called Embrace Autism and that’s got some useful free questionnaires where you can rate your ADHD-like symptoms and other neurodivergent characteristics.

Keep a diary or a logbook, document some thoughts on where, when, and how you think you’re being impacted by undiagnosed ADHD. This is really helpful information as part of getting a formal diagnosis is being able to show how the symptoms impact you in more than one area of your life. So this could be at work, as a member of your kids school PNC, in your studies, playing team sports in your marriage as a parent.

I would probably tick all of those domains. If you can track down some old school reports, that’s useful for your diagnostician to see if there’s evidence of ADHD traits in childhood, although that’s not completely necessary for a diagnosis.

If you have a GP who’s willing to support your diagnostic journey, then be expected to run a few tests to rule out other medical explanations for ADHD-like symptoms.

This might involve evaluating your hearing, sleep patterns, and looking for nutritional deficiencies or autoimmune problems. You might be asked to do a drug screen by providing a urine sample and an ECG to check your heart health.

If you’ve done any online questionnaires and or have been working with a psychologist like you or Jane or other suitably experienced health professionals, see if you can work together to put together a summary of your ADHD-like characteristics, and you can even potentially forward these to the psychiatrist before that initial appointment.

Be prepared that the psychiatrist may also want to talk to friends or family members who know you well and can back up your own observations. So think about who you would feel comfortable asking to be involved in this process.

Jane McFadden:

And one thing I hear quite often is that the ADHD mum or person, any person, might feel that the GP might not be wanting to give you a referral. What would you do at that point?

Dr. Jacinta Thomson:

If your primary aim is to go through that diagnostic evaluation and formalise a self-diagnosis, then you don’t actually need to go through your GP. You don’t need a referral.

So if you just want to learn about whether that diagnosis fits for you and learn all about how your brain works, then you can self-refer for an assessment with a psychologist.

If you don’t have access to changing GPs in your local area, and again, there might be accessibility limitations where you live, then see if you can find a GP via telehealth who might be able to support this process and not be such a gatekeeper.

If you go through the pathway of getting a diagnostic assessment and report from a psychologist, then really there shouldn’t be any issues with the GP reading this report and following the recommendations to then link in with a psychiatrist.

Jane McFadden:

Jacinta, I love what you’re talking about in regards to really getting, seeing yourself going to a psychologist that’s neuroaffirming and really going through your life and some of your ADHD-like characteristics and putting together that summary.

What I spoke about last episode was taking your power back and starting to really get a handle on your ADHD, how it impacts your life and what you can set up structuralized to improve your symptoms and improve your life.

One thing that I do see, and I have a little bit of this in my ADHD mum’s inbox, is I get a few mums that will say things like, look, my kids have been diagnosed and I’ve just been, you know, kind of taking the riddle and I’m pretty sure that I’ve got it, I’ve done the symptoms, but I don’t know how to get seen and I’m just not going to bother at this point because, you know, I can get medicated through my children’s medication and that’s not something I would ever approve or think is positive, right?

However, one thing that I think that you have really stated well is that if you go through a clinical psychologist and you go through your own traits, how you’ve masked, you will actually get a better hand on your life in terms of being able to set up those structures, do the therapies, look at how it’s impacted you and start to really accept your diagnosis because it’s not just about getting medication from a psychiatrist.

So I do think that’s a really good point because if I was just taking medication and not doing anything else, I know that I wouldn’t be in the place that I am where I think that I’ve got the most handle on it. However, in saying that I still obviously have got lots to improve on as we all do, but I think there’s some real power in getting your own diagnosis, being seen and really creating a summary of your own characteristics.

Dr. Jacinta Thomson:

I think that’s really dangerous territory because whoever’s prescribing that medication for the child, whether that’s the pediatrician or their GP or a child psychiatrist, they’re actually monitoring those prescriptions and the usage very closely.

So if you start taking that medication or even by accident and it works and you keep going, then you’re running into problems that may affect the prescribing rights for your child.

The other thing is that taking medication without a form-wise diagnosis and that psychoeducation someone hopefully goes through in learning all about their ADHD neurotype with their health professional, it’s really important to keep expectations in check because taking psychostimulant medication can sometimes make a really big difference and that’s amazing if it does, but what people do when they’re not really prepared or set up those sort of structures and strategies to cope with a change in functioning is that they will all of a sudden sort of lift the bar in terms of what they set themselves up to achieve in their everyday life or sort of take on bigger and more diverse goals and interests.

Now ADHD is not a disorder of ability, it’s not a deficit of intelligence, it’s actually a disorder of performance….

So that means that we have trouble performing to the best of our ability or the best of our potential because our executive functioning is having a really hard time coping in this neurotypical world.

So if someone takes ADHD medication and all of a sudden that feels like it increases their performance, what they will then do often is, like I said, set the bar higher.

So rather than sort of closing this gap between how they’re performing and what their ability actually is, they sort of raise those two lines so the discrepancy persists and they continue to be just as frustrated, just as burnt out, just as exhausted as ever.

So getting a formal diagnosis and really working through that, building that map or that understanding of your brain, building in those structures and accommodations is really critical in conjunction to trialing medication.

Jane McFadden:

Yeah, great. It’s kind of similar to that example I use when you talk about the duck on the water and then their legs are going fast.

I would imagine that their legs are just going faster, not necessarily in terms of that they’re swimming better, their legs are just going faster and faster, which seems terrifying to me, to be honest.

So for this episode, I think we’re going to conclude here. This is the first part in a two-part series on diagnosis.

You can understand we never do diagnosis in one 20, 25-minute episode. So let’s break and we’ll come back with part two in just a moment.