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. 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 whole lot to learn and a whole lot to look forward to on this podcast.

Today we are doing part two of our diagnosis episode with Jacinta Thompson. If you haven’t gone through and done our first part and I know some people are excited, I listen to things out of order all the time, I would highly recommend that you do go back to part one. It’s only 20-25 minutes long because I think this is best listened to with that one first.

So I won’t do Jacinta’s introduction again but what I will do is we’ll just keep kicking off to where we were which was, Jacinta can you share a little bit about your own personal experience with diagnosis?

Dr. Jacinta Thomson:

I think like a lot of the listeners to this podcast who are either querying their diagnosis as an adult and or have those highly internalised or highly masked traits, I think my diagnosis was missed because I was generally quite well behaved and I got good grades. Now that I know so much more about how ADHD presents differently in girls and women, I can look back and see so many signs of my struggles from very early on but that was the 80s and now our parents and our teachers didn’t have the knowledge to pick it up in someone like me. I was also a high level athlete in a few sports so my energy was channelled into training multiple times per day and weekend competitions.

I would say that the demands of my life started to encroach on my capacity meaning that I sort of started to overflow and my compensatory strategies and my natural intelligence couldn’t quite keep me on track from about years 11 and 12. So again looking back on those years I can now identify what were growing generalised anxieties, difficulties with emotion regulation, rejection sensitivity which is quite common in ADHDers, some more disruptive behaviours in class, growing sensory hypersensitivities and having to work harder and harder at regulating my attention and my output or like my focus on my studies and so forth. I actually remember in years 11 and 12 I used to get so distracted and frustrated by the pigeons that would sit on the roof of our family home and make the same cooing sound you know over and over and over so infuriatingly distracting that I couldn’t concentrate on any sort of study.

So bless my parents they actually got up and screwed in fake cats with like marble eyes that you get from Bunnings, they stuck those on the roof to try and keep the pigeons away so that I could just try and focus on my study. I also went through shocking periods of insomnia in those later stages of high school. I would lay awake for hours unable to switch off my thoughts and with overwhelming urges to do push-ups in the middle of the night because my arms felt like they had too much energy to sleep.

But I was lucky to have really incredible scaffolding and support at home which helped me to maintain quite good grades at school. I went from school straight into nine years of uni which is just nuts. I don’t know if I recommend that for anyone but I did always have a like a known sense that if I took a whole year off a whole gap year I wouldn’t be able to come back in and ground myself and refocus on finishing my studies.

But I certainly filled up my dopamine cup throughout my undergrad. Lots of fun, new friends, partying, ski trips, overseas holidays and other spontaneous adventures. I’d say I made my fair share of wildly impulsive and reckless decisions too, many of which I cannot name on this public podcast.

Whilst my then undiagnosed ADHD prompted me to try lots of cool new activities and dive headfirst into my lifelong special interest that is psychology, it also really started to trip me up. I was finding that my attention was either 100% engaged in what I was doing or I’d simply fall asleep wherever I was. I’d struggle with dangerous micro-sleeps driving to and from uni. I’d zone out and nod off in about 80% of my lectures, often causing a huge scene. Sometimes I’d knock over desks, not just mine but my neighbours, or I’d crumple on top of people in the row in front, or I’d sort of nod off but then jolt awake so violently that the lecturers would stop to check I wasn’t having some medical emergency. Super embarrassing.

My handwritten lecture notes would generally just turn into an illegible scrawl as my hand would like drift off the page as my brain invariably shut down. I did resort to some pretty drastic measures to try to keep myself awake and attentive but nothing really helped. Studying for exams was really stressful, it was a nightmare. I’d have to teach myself an entire course, the whole content that I’d actually been present for but had no memory of learning because my brain just was not engaged at the time. I could never decide where the best spot was to sit in the lecture theatres, too close to the front and I’d embarrass myself by passing out onto the floor or onto someone else in front of everyone, or too far back and I’d be constantly distracted by the chatter and the movement of all the students in my eye line. I remember speaking to my GP about year two or three into my undergrad and she was horrified. She sent me for a sleep study and a sleep latency test which is a test for narcolepsy and based on those results I was diagnosed with narcolepsy and I was then prescribed with dexamphetamine which is a psychostimulant that is generally used to help with excessive daytime sleepiness like what is seen in narcolepsy. After that I was on and off dexamphetamine for about 10 years which really helped a lot and definitely helped me get through my master’s and my PhD. I then went off the dex for a few years whilst I had babies.

Maternity leave was a really really really tough time for my brain. It didn’t suit me at all and I’m sure a lot of mums can relate to this. I found that having babies completely overloaded my circuits, my executive functioning, my motion regulation systems were overwhelmed and really not serving me well at all.

Returning to work really helped me. I love my job. I get so excited to go every day. Being my special interests and something that I can look, you know, really capitalise on my ability to hyper focus in my sessions with my clients, that was such a positive step for me in every way. But nonetheless I think returning to work when you’ve got little kids at home it adds another layer of complex demands in terms of being organised, prepared, focused, productive, efficient and able to remember what seems like 30 million things every day. So long story short I saw a psychiatrist about three years ago to talk to them about my difficulties that were becoming more impairing and to revisit my earlier diagnosis of narcolepsy.

Within about 10 minutes the first psychiatrist said, I don’t think you have narcolepsy, I think you have ADHD and autism. Shocked I went to another psychiatrist for a second opinion who actually said the same thing in about the same time frame. I knew that psychostimulants had been helpful for me through my 20s so I was happy to go back on them as per the psychiatrist’s recommendations.

And then I wanted to understand more about what ADHD meant for me, so I sort of went in the reverse way that I generally recommend, but then I went to see a psychologist and went through quite a comprehensive and very affirming assessment to learn all about the nuances of my neurospicy head. And ever since then I’ve been experimenting with and learning all about sort of those workarounds, all those compensatory strategies to help me keep up with the demands of my life as a busy working mum.

Jane McFadden:

Wow, you know I actually think you’re really lucky to have found not one but two psychiatrists that could actually correctly diagnose you. If you think about how hard that is to actually find, you found two in a row.

The funny thing is that I was actually quite offended that they made those diagnoses or assumptions so quickly, and probably because I did show up with some summaries and sort of self-reflections on how I think ADHD or at least some sort of disordered problem with inattention might help explain some of my difficulties. So it wasn’t a huge leap for them, but yeah interesting you know now that I look back it was such a valuable sort of step in my life and my self-understanding, but at the time it was quite confronting.

So key question that I reckon everyone’s wanting to know, do you actually have narcolepsy or were you that inattentive you just fell asleep because it was so boring to you?

Dr. Jacinta Thomson:

Yeah so when I did the sleep latency test which is for narcolepsy that actually set you up, they do four intervals during the day where they say okay sleep now and it’s literally like they give you 10 minutes and they see if you fall asleep in that 10 minutes and if you fall into deep REM sleep. In those four times 10 minute trials I did fall asleep immediately but I didn’t actually go into REM sleep. So it’s a bit blurry.

I definitely had this problem with hypersomnolence which is excessive daytime sleepiness but it wasn’t like accurately captured by what we would generally see in narcolepsy. So there’s still quite a few question marks over was it a sleep disorder or was it a problem with inattention, but now I recognize that it is absolutely a part of how my ADHD presents and fortunately these days in my life I don’t really have to sit through too many two hour, three hour lectures where I’m not actively participating in conversation. I do do assessments and obviously sit through these hours back to back with my therapy clients but when I’m talking, when I’m really connected with someone in front of me, again that is my hyper focus, that is my special interest.

I’m switched on, I’m focused, I’m very alert and again I don’t do any long distance driving because just like during those uni days if I’m not on then I’m off, I’m asleep. So I very much think it’s an offshoot of how my ADHD shows up.

Jane McFadden:

Oh absolutely and we know that there’s people in this podcast that are going to have hyper focus, special interest and it’s so easy to focus when it’s something that you want to but as soon as it’s something even slightly boring, I know a lot of people say socially that could be really difficult, someone starts telling you about something that you’re not really interested in or something that you don’t like and you’re like trying your hardest to keep your attention so that totally makes sense.

So I was wondering what would be available in terms of support because so far we’ve spoken about some pathways that are going to involve people spending time and money. After you do this, what support is available on Medicare, NDIS or privately for women with ADHD?

Dr. Jacinta Thomson:

Jane, as you mentioned in a previous podcast, NDIS doesn’t cover ADHD as a primary disability. Unfortunately, my understanding of the reason for that is because even though it’s a neurodevelopmental condition, meaning it’s something that you’re born with and you will have forever, they consider it to be something that is highly treatable and the treatment in the case of ADHD is generally some form of stimulant medication.

Those stimulants like Ritalin, they’ve been around for decades and they’re generally useful in 70 to 80 percent of ADHDers. So unfortunately, NDIS sort of categorises that as something that is not a lifelong disability, which you know is really hard for people who maybe don’t respond favourably to the medication options. You may possibly be eligible for NDIS if you have a co-occurring diagnosis of autism or other neurodevelopmental difference that significantly impacts your everyday functioning.

Again, I think if you’ve got a few things going on, best to have a chat with a neuroaffirming psychologist who can provide a comprehensive assessment to explore those co-occurring conditions and then what sorts of services and supports you might be able to access through NDIS. Some private health insurance companies, they may cover a portion of psychology consultations. Some of them differ whether they will contribute to psychology sessions that are dedicated to assessments versus therapies.

So it’s best to probably just give your private health care fund a call if you want more information that’s specific to you. Generally speaking, as we said in last episode, Medicare rebates can’t be used for diagnostic assessments for adults. If you don’t think you need a formal diagnosis but you’re self-diagnosed or you just know that your executive functioning is really struggling and you just want supports and strategies for living well, then you can speak with your GP about organising a referral and a mental health care plan for therapy sessions with a psychologist.

Like we said before, ADHDers, especially mums, we often have a host of other challenges as well, whether that’s anxiety, stress, relationship challenges, performance problems at work or with study. So it would be great to get a mental health care plan and chat to a psychologist about trying to figure out some ways that work for you to, yeah, again sort of live well with having a different brain.

So if you get a referral and a mental health care plan, this can help cover a portion of your session fees with a psychologist for up to 10 sessions in a calendar year.

Another growing industry in Australia is in the world of ADHD coaching. So sometimes these are life coaches who have branched into ADHD specialisations. It’s important to remember that ADHD coaching is not a regulated industry, so it would be really important to ask that coach that you might want to make an appointment with, just get some more information on what training they’ve done, what experience they have, what qualifications they have.

And some of these coaches, at least some of the ones I know, they work really well. And sometimes it’s, again, working part of a team with you, with your GP, with a psychiatrist, with a clinical psychologist, and an ADHD coach might be able to, say, focus on helping you develop really specific skills or strategies to help with executive dysfunction.

Jane McFadden:

Yeah, I think that’s a good point. And if there’s any ADHD coaches listening, feel free to correct me, but I’m pretty sure that the ADHD coaching has kind of come out of the psychosocial recovery coach that has been brought out through the NDIS. And I know I’ve been told by some ADHD coaches that if you have bipolar, schizophrenia, some pretty serious depression or anxiety, you can receive NDIS funding for those as a major disability.

And then from what I’m told, again, I’m just speculating, so the ADHD coaches might be able to correct me here, but from what I understand, you can get an assessment, possibly through the NDIS, if you have OT or psychologist funds available on your primary disability, and they can make an assessment for ADHD and use funds.

But of course, everybody would need to go check that with the NDIS themselves. But I know a few coaches who have let me know that’s a pathway for them, and they do receive funding through the NDIS, but you have to have a primary disability that is an ADHD first. I’m pretty sure that’s the case, because I’ve had a few people message me saying that’s how they do things, because they actually get paid through the NDIS, not privately.

But then again, as you mentioned, Jacinta, that isn’t actually regulated through the NDIS. So that’s a really interesting situation that you’ve got there. Do you have any comments on that one?

Dr. Jacinta Thomson:

In my experience, it’s quite difficult to get any assessments across the line to be paid for by NDIS unless they’re with a clinical psychologist. Sometimes an education developmental psychologist can provide those assessments, and less commonly, generally registered psychologists, who could also be incredibly skilled and experienced, they have a bit of a harder time getting those assessments across the line unless they’re backed up by a clinical psychologist. I think for NDIS to pay for slash recognise anything in the diagnostic space, it has to come from really a clin psych, or a paediatrician slash psychiatrist. So an OT can’t do it on their own.

An OT would have to be as part of a multidisciplinary team, like with a psychologist and a speech therapist, for example, and certainly an ADHD coach wouldn’t be able to do like a diagnosis, and nor should they because a good assessment should really be able to tease apart what are those other differentials, right, or potentially sort of co-occurring conditions that could, in part, explain some of those ADHD symptoms.

Jane McFadden:

Okay, so maybe if let’s just say, maybe there’s someone on this podcast who’s being diagnosed with bipolar, they currently have an NDIS plan, and they’re thinking, oh my goodness, maybe I actually have ADHD as well, or in place of, or I don’t really know, probably what the first step you would need to do is call the NDIS and say, look, can I use some of my funds for clinical psychology to get an assessment to see whether I have ADHD as well, or as part of, and get my diagnosis looked at.

I think that’s a real opportunity area compared to everybody else that is, you know, possibly paying the five to seven hundred dollars for an appointment. I think that’s worth mentioning because those people who have clearly been suffering for a long time to have that NDIS plan, to get that assessment and at least have a look at it to see whether they can make improvements in another way.

One important point there is, obviously, NDIS doesn’t cover medical expenses because that belongs to Medicare, so NDIS can’t and will never pay for you to see a psychiatrist. That will always be Medicare.

Dr. Jacinta Thomson:

Yeah, great point. That is a great point. I’ve noticed that in terms of asthma, arthritis, a lot of people are trying to get that recognised as a disability. They do see that as medical, which is Medicare’s responsibility. However, of course, we can all recognise here that Medicare is going to rebate a lot less than what the NDIS will, but that’s just the way the world works. I think the NDIS does a great job in providing what they do. So if you can get on the NDIS, I highly recommend that you try. If you do have another diagnosis or anything that you think could be acceptable, it’s always worth putting an application in.

Jane McFadden:

Right, one last one, Jacinta. In your opinion, what changes do you think could be made or should be made to the public system to help people access more quickly? Given that we don’t really have a public system set up to support adults with ADHD for diagnoses or therapy and coaching services.

Dr. Jacinta Thomson:

I think there’s a whole lot of room for improvement with setting up services to help people access, get the information that they need to live better with ADHD. Also, it’d be great if we had more options for affordable psychiatry.

Jane McFadden:

I totally agree.

Dr. Jacinta Thomson:

What I’d love to see is some means testing, so to see who really legitimately can just never going to be able to afford a psychiatrist appointment, and to get those people some bulk build sessions. I think it’d be really important. There’s a lot of people that inbox me and say there’s just no way that they can ever afford to pay privately. They’ve had to ask family members, they’ve had to try and borrow funds, and those people are really left either taking their children’s medication, buying medication on the street, or going untreated, which is completely unfair in, as you said earlier, one of the best healthcare systems in the world. It’d be great to have those people be able to have access to some of that services if possible. I think means testing would be one way to make sure that we’re really helping those who really need it.

I usually recommend to my clients as well, and especially mums who have medical expenses, not just for themselves, but their families, if your family generally hits your Medicare safety net each year, that basically means when your accumulative medical costs, out-of-pocket costs, reach a certain threshold, then you start to get significantly higher rebates for your medical appointments. Have a look at your own Medicare account. You can do that through myGov into Medicare services, or if you’ve got the Medicare app, you can keep a track of that.

If you think that your family is possibly going to hit that threshold some stages here, possibly towards the end of the year, then maybe what you could do is try and get a referral to a psychiatrist and book that appointment ahead of time. Book it for last thing in the year, according to who’s got that availability. Then potentially, hopefully, if you get to that point where you cross the threshold and you’re getting much higher rebates, then by the time you see the psychiatrist, it’ll be significantly less out-of-pocket expenses for you.

Jane McFadden:

Is there any charities or any organisations across Australia that do any kind of, you know, I’m really struggling, my kids are struggling, this is where we’re at, is there anywhere around that you can apply to for funding or some kind of aid?

Dr. Jacinta Thomson:

Not that I know of, other than what’s provided by Medicare. Sometimes if clients, again, they don’t think they can afford to go through a formal diagnostic process or see a psychiatrist. I think, again, a self-diagnosis is valid. If you see a GP and organise a mental health care plan referral to see a psychologist who works in the ADHD or neurodivergent space, then you can still get that Medicare support for really valuable, hopefully really useful therapy sessions to make a big difference in how you go about your life. So again, you don’t necessarily need to fork out for a formalised process. You can still get some help with those Medicare rebates for therapy sessions.

Jane McFadden:

Yeah, absolutely. And I think, you know, people that are listening to this podcast have got access to the internet and the internet is an absolute wealth of information. There’s so many people out there, you know, you spoke about TikTok before.

I’ve also seen some really great podcasts from ADHD coaches. I’ve seen some great blogs. If you can’t get any access to try any medication, it doesn’t work for everybody anyway. So you’re not necessarily missing out. There’s a lot of people I know that don’t even regularly take medication. It’s not about that for them.

It’s about recognising their symptoms and making changes. So even if you don’t have a diagnosis, you’re waiting the year. And I know what it’s like. Everyone’s impatient with ADHD, aren’t they? And especially after so long. You might have waited 30, 40 years. You’re thinking, wow, I think this is the answer.

But yet you’ve got blockages. But you don’t necessarily have to see them that way. I think you’ve made a great point.

You can still make changes. You can still improve your life. And you can wait for the right pathway to open up.

As I said before, I’m a huge advocate for self-exploration, even self-diagnosis and self-help. I’m working on putting together a resource list with a bunch of neuroaffirming links to books and YouTube channels and other self-help materials on my website. So check out www.timetountangle.com.au and check out the links page.

And hopefully there are some resources there that will really resonate with you and can give you a head start to understanding your brain better.

Jane McFadden:

Yeah, beautiful. I think that’s great because sometimes you listen to these podcasts, you really connect with somebody and then you go into a different podcast or you go onto a website and the information is a bit different and it’s easy to become overwhelmed on Google.

We’re all in research mode. So I think the interview we’ve had with Jacinta has been so valuable. Personally, I’ve learned a lot.

So if you go over to a website, the link will be in this episode notes. You can go and have a look and check out the resources from somebody that is a professional in the area rather than pressing Google because sometimes that can be a little bit dangerous. You never know what you’re going to get.

That’s a great point. But look, thank you so much for your time, Jacinta. You’ve been an absolute legend with your experience and lived experience and also professional experience. So I really want to thank you for your time today.

I know that you’ve really given a lot of valuable information. It’s been a pleasure, Jane.

Dr. Jacinta Thomson:

It’s been a blast and I’m sure we’ll speak again soon.

Jane McFadden:

Great. Thank you so much.