Episode 20 – The Worst Assessment Process Ever: A Cautionary Tale With Dena Robertson

Jane McFadden:
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Welcome to the ADHD Mums Podcast, a safe place for everyday Australian mums to discuss their struggles with ADHD, motherhood and life. Welcome to the next episode of ADHD Mums.

Today we have a really exciting theme and it is called The Worst Assessment Process Ever: A Cautionary Tale.

Now, how I thought of the episode was, I run a Facebook group, which by the way is hands down awesome. Dina Robertson wrote on the Facebook a very disturbing story about assessments, diagnosis and how difficult it was for her. I looked at it and thought there is more details I want to know and I don’t want to keep this into the group, into a comment.

I think this is the type of process that happens so often yet isn’t talked about because no one knows about it. So I’ve brought on Dina, who was really kindly available to share her story. Welcome to you, Dina.

Dina Robertson:
Thank you very much for having me.

Jane McFadden:
Dina is a 39-year-old widow and a single mum of two girls. Dina has newly diagnosed ADHD and her eldest daughter has been diagnosed as autistic and also ADHD late last year.

Dina spent years being medically gaslit and having her symptoms dismissed, which has had a huge impact now that she looks back having joined the Facebook group and the podcast. Dina works in is now questioning the entire system. Oh my God, Dina, you and I will get along.

Dina is a classic career hopper, also me, typical ADHDer who is always looking for the next chapter. She’s also an oversharer and she’s the best person to have on the podcast. She also can be very opinionated. She’s already apologised that she may rant. She loves to blurt out thoughts and is generally quite unhinged in the manner that she speaks. Welcome aboard, Dina.

Dina Robertson:
I read that bio on Kalani and I was like, here we go. Yep, strap in.

Jane McFadden:
This was like when Sharon from the Functional Family said to me that her husband told her she could say whatever she wanted in an episode about relationships. And I was like, let’s just shot a podcast and go then, Sharon.

Welcome. And I know this is your first podcast, so I really appreciate the bravery to come on and speak when I asked you.

Dina Robertson:
I really appreciate it. No, thank you. You suggested it and I was like, of course I’ll do a podcast. And then yesterday I was like, I’m doing a podcast tomorrow. That’s fine. Yes.

Jane McFadden:
I did send you the questions and I purposely didn’t send them too early because I thought I don’t want her to pull out and overthink it. So I’ll send it just a few days before, but not too far before that she will freak out, but not too late that she will not be prepared.

Dina Robertson:
Yeah, I was pretty invested in the episode. So thank you very much.

Jane McFadden:
So let’s go back to the… so there’s your own assessment process and then there’s your daughter’s. So let’s try and stick to yours to begin with, knowing that we’re going to get to your daughter’s after. So tell me about your assessment process.

Dina Robertson:
Okay. So as you said, I have been newly diagnosed this year and I’m 39. So this has obviously been going on for a pretty long time. I was diagnosed just by way of a lot of adults these days from getting their own kids diagnosed and doing that research for Ruby and realising I ticked every single box.

Then when you look back over the years, you think, oh, this has been my entire life. I’ve been like this my entire life. And I have struggled with these things my entire life.

Dina Robertson:
So for example, I was first diagnosed with depression in my early 20 and I’d also just had a baby. So I feel like the system’s go-to is to explain away with the first thing that they come up with. So you’ve just had a baby, you’re a mum, you work full time, it’s postnatal depression. You’ve got that.

I’d also experienced quite a lot of trauma as a teenager, one significantly traumatic event. And so that’s often used as a way of explaining away things. I was diagnosed with anxiety more recently, or later on, probably my mid-thirties. And again, I’m a full-time working mum. I just started my new job, which is really stressful. I’m a shift worker. It’s just so easy for people, for professionals to be like, oh, you’ve got anxiety.

Those have been like my gaslighting, like that’s just happened my entire life. And so I’ve only just realised that I have ADHD and then I had to push to get diagnosed.

Jane McFadden:
So do you think that the ADHD is like your primary diagnosis and then the anxiety and the depression are symptoms that have come out of the ADHD?

Dina Robertson:
100%. Yeah.

And then when I think back to being a child, it’s so common for girls in particular to be diagnosed with social anxiety when they’re young, primary school age, adolescent age. Obviously that’s the peak of your social anxiety time anyway. But now that I look back, I think, no, I actually just had ADHD, even though I was just super awkward at school, had trouble making friends, just constantly thinking about the way I presented.

Obviously I learned how to mask very early on, like all girls do. But yes, when I look back, pretty much everything that I struggled with could have been attributed to ADHD.

Jane McFadden:
Or mentioned as ADHD could be seen as a little autistic in terms of just anxiety and not knowing what to say. Have you ever thought autism or had it before?

Dina Robertson:
No, I haven’t. And it’s definitely crossed my mind, but the thought of, I just don’t have capacity for that at this point. So I haven’t done that yet, but yes, I do agree that some of those ADHD traits can sound or cross over.

See the problem I think as well with the assessment process is, ADHD has a Medicaid attached to it. It has possibly a bit of a help coming. Not that everyone can take it, it doesn’t work for everybody, but it does hold a little bit of hope. Particularly when I found out there was a mention, I was really excited.

Jane McFadden:
And I suppose with being diagnosed autistic, unless you’re able to get NDIS funding, really you may not feel the need to get assessed. So I just wanted to highlight that some of that anxiety stuff could be possibly some autistic traits, but you had that and your life could have been different. That’s where you were going with that, sorry.

Dina Robertson:
Yes, so that’s right. But now that I look back, I just think if I had known these stuff, how my brain operates, things could be very, very different.

Jane McFadden:
What kind of emotions did you go through? The grieving, the anger, how do you feel about it?

Dina Robertson:
I didn’t, I was expecting a little bit of that, but no. I think with how much I’ve learned about ADHD in girls and just from researching and going through it with Ruby, I didn’t feel any grief or anger or someone had picked up on this. I don’t blame anybody. I don’t feel like someone should have done something better. That would have been great.

But I think my main thing is that I feel relieved that I know now why I do certain things. And for me, a huge part of it has been that self-esteem or that constantly beating yourself down for not being able to do things that seem very simple and thinking, what’s wrong with me? Why can’t I just do this? Or why am I like this?

So for me, it was just a relief, I think, about learning that there’s not really anything wrong with me. I’m just different. And if I learn how my brain works, I can work with it as opposed to constantly trying to work against it. So for me, it was like a big relief. And I feel just a lot more relaxed now, even with some of the ADHD things that I do. I’m a lot more compassionate with myself.

Jane McFadden:
Did you find a medication that worked for you? Has that been part of it for you?

Dina Robertson:
Yes. So I’m on Vyvanse, and I still do another review because I think it will probably go up. I’m still sort of working my way up. I am still also on my antidepressants as well. So yes, just navigating that. But yeah, Vyvanse has made a huge difference for me and for Ruby as well. But yes, for me, it’s been a really obvious difference.

Jane McFadden:
I’ve been a very strong advocate with the Vyvanse shortage nationally. The survey, and I’ve spoken to other men who haven’t responded. Anyway, so we find a medication, and then you’ve gone through this massive process, which we’re going to get to, and then the medication isn’t available.

Can life get any shitter at that point?

Dina Robertson:
Yeah. Yeah. It’s just like rubbing salt in the wounds, isn’t it?

Jane McFadden:
Anyway, I will not go down that rabbit hole, even though I want to.

Okay. You said before that your daughter was picked up and then you kind of got diagnosed as a part process. Did you drive that process or did someone come and say to you, hey, Dina, we think you might be having the same symptoms? How did that happen?

Dina Robertson:
Yes. So I had already been seeing the same psychologist for probably 15 to 18 months, and I’ve had the same GP since 2018. So I see the same professionals. They know me quite well, but I was still the one who instigated the ADHD diagnosis, even though my psychologist knew that Ruby was going through it because she helped me a lot with just names, connections, what needs to happen, which was a godsend.

But even when I mentioned it to her, she didn’t disagree, but she didn’t also go, yes, that’s it. And it is tricky. Everyone’s situation is very different, I know.

Dina Robertson:
But when I started seeing her, that was when my husband got diagnosed with cancer. I had already gone to her, started trying to see her before that because I wanted to work through some old trauma. So there was just always a lot going on.

In an hour session, you barely even scratched the surface to be able to get underneath to those things like what’s really the root cause of why I can’t manage these situations in my life or anything like that. So you just can’t get to the bottom of the depression, the anxiety, anything like that, because I’m just constantly treading water.

But when I mentioned it to her, she was very supportive. We went back through my notes of all the sessions. She was like, well, yeah, it does indicate all of those things. But obviously, we’re so focused on the big ticket items. You don’t really get to dig down into those other things.

So she ended up helping me a lot with getting stuff set up with a psychiatrist, which I know a lot of people wouldn’t be able to do. They wouldn’t have access to somebody who knows the process, who knows who would be a good one to go to, like a psychiatrist, who knows about the medication.

She knew about things like having… I’ve got a title, like bad cardiac history. Also, I should probably put a disclaimer in. I’m not clinically trained at all. I work in health, but I’m not medically trained, just while I was saying that. But she knew about those other things, just other things that I could do in the process to make it easier, things that I could get done before I saw a psychiatrist, so we weren’t wasting time and going to multiple appointments. So she was an amazing help, but it was me who instigated it.

And that’s even after seeing her for over 12 months.

Jane McFadden:
My GP, I didn’t even actually bother speaking to her about it. It’s a common thing. It’s like, yeah, what’s the point is really a good question.

I’ve worked as a psychologist and I left the industry. Why? Probably to do with my ADHD and being a bit impatient and finding it all a bit infuriating.

However, I also still felt there was a lack of proactivity that I just saw a lot. And when I was under supervision from people higher than me, maybe I didn’t pick the right people. I’m sure not everybody’s like this, but I wasn’t convinced we were doing enough.

And I know that, but obviously, like I retired and I didn’t last. So that person that we’re speaking about has continued on and it would be a hard job to navigate that. So credit for her for helping you organise it.

So she should, though, because you’re paying her. It’s not a free service. But it would be really nice, I think, generally for the mental health profession to be able to proactively look at things.

As an example, if you’re in relationship counselling, I believe they should do a screener for ADHD or being autistic or trauma, whatever it is before you start. Because if you’re asking why someone hasn’t picked up their towel and they have ADHD, it might be a bit harder for them. If you’re looking at eating disorders, alcohol problems, it would be really great to see what’s underneath that.

And I am a little sick generally of the mental health system looking at the symptom of the problem, not the actual problem. And that there, I think, is a real problem. And I really appreciate you bringing it up because I think great example.

Dina Robertson:
It’s not bad. It’s just how it is.

Jane McFadden:
Yeah.

Dina Robertson:
And it is. That’s just how it is. And it’s because who can afford to go and sit with a psychologist for a three-hour session so that you can get all the big ticket items out of the way and then actually start to dig down.

Jane McFadden:
Absolutely. And from the psychologist’s point of view, you’re probably coming in there a bit messy. No offence, Dina.

Really having some stuff that you need to get off your chest. And she’s thinking, well, I don’t really have time. And what if I make her worse by dropping in this ADHD? Then she’s spinning and I’ve got a crisis situation.

Dina Robertson:
Exactly. 100%. And you’re exactly right.

Jane McFadden:
The last thing she’s going to want to do is send me out into the world with just more questions.

Dina Robertson:
I know. Yeah.

Jane McFadden:
You go in there with so much going on and then she comes and goes, do you maybe have ADHD? And you’re like, okay, I don’t need any more shit in my life. Yeah. And then Spiro.

Dina Robertson:
Yes. It is hard. It is hard.

Jane McFadden:
And that’s… Yeah. Hard one. I actually feel quite lucky because I had the time and the money at the time to see her regularly. And even I still couldn’t get to the bottom of what is going on with me.

I hate to see people who can’t afford it and work full time Monday to Friday. And this is where I have a problem with social media and getting your information from social media.

Okay. So what’s the alternative I’d love to hear? Because if we’re waiting to have the time and money and space to go to a mental health professional for a couple of years, you still didn’t get a proactive diagnosis out of it. And you have to then get your own information or get information from your children’s practitioners to then advocate for yourself.

What if you’re not listening to a podcast? What if you don’t have social media? What if you don’t know what the symptoms are? Do you wait? Because if I’m going to wait to be told that’s okay. If the medical practitioners are actually coming out and proactively telling you, I haven’t had that happen. How are you supposed to know?

Dina Robertson:
No, exactly. That’s exactly right. No one knows what they don’t know. And ADHD or autistic neurodiverse people, right? We generally got some chaos.

When you’re going in for a session, you generally got some kind of agenda because you got shit piled up. You could go three hours just talking. So they’re supposed to get a wording. How are they supposed to do that? It’s a great point.

Jane McFadden:
Yeah. And also just on that, like you said, how are we going there spiralling most days? Because I just lost my husband. My husband was terminally ill. I have lost both my parents. So trying to even talk about that was impossible because I was dealing with watching my husband go through what he was going through, dealing with the fact I was going to be a single mum working, still trying to actually live.

And sometimes I could get to my appointment on time because I’d drop out there on days when she wasn’t there, or I’d be there at the wrong time. And it’s so ADHD. But then again, can you go drop that bomb into somebody who’s going through that? Hard one.

Dina Robertson:
But when are ADHDs not in chaos? I’d love to know. It’s really tricky. Anyway, I think that is really important to note is how hard we have to advocate for ourselves and our children.

Jane McFadden:
So I think that’s a great point that you’ve made.

Dina Robertson:
Yeah. It is an absolute slog. And you can see why people would just give up because it is just so much energy.

Jane McFadden:
If you hadn’t been in such a bad way mentally, you probably wouldn’t have even been in a psychologist. So let’s move forward. I’d love to go down that rabbit hole, but let’s move forward.

Okay. Assessment for your child. How did that play out? Was it different? The same? How did it work?

Dina Robertson:
Yes. Very different. So Ruby, I first started taking to see a pediatrician when she was like two or three. Again, new mum. She was my first. I was the first out of any of my friends to have kids. So I’m going in blind. Same with my husband. We’ve just gone in blind.

But yeah, I knew when she was very little that there was something, I don’t want to say not right because that’s awful. There was something about her that I just didn’t understand and I couldn’t manage. I couldn’t work out how to help her.

Jane McFadden:
What a couple of those things were?

Dina Robertson:
So it was the, even when she was a baby, she would not sleep during the day. She wouldn’t even, like she’d go down, she’d have the tiniest nap. And I know that a lot of kids do that, but she would just go from the minute she woke up until bedtime.

And it would get to the point where she would be so tired. She still wouldn’t sleep though. She would just keep trying to power on. And then obviously that’s just tantrum city. And that was when she was a baby. And it just kept on like that as she got older, everything was very intense.

So she did everything with so much intensity. Like she couldn’t even just regulate her, the volume of her voice. Or every time she spoke to you, she would just yell at you. Like she was just so full on all the time.

If I asked her to do something as she got older, like following steps, I realised she couldn’t do that. If she wasn’t interested in something, I just had no chance. And when she was little, like two or three, it just seemed like a behavioural thing. Like why is she so naughty or disobedient? And I feel awful saying that because—

Jane McFadden:
Yeah, that’s what it was like. And it was like that 24 hours a day.

Dina Robertson:
So it was just defiance and just wanting to do… I could not get her into any kind of routine ever. Trying to get her to go to bed at night because her mind was racing. She couldn’t settle. She couldn’t go to sleep. And then that became obviously an issue because as we get closer to bedtime, she gets more heightened. The whole house gets more heightened.

And it’s just that never being able to resolve or come back from anything. It would just keep going and escalating and going and escalating. It never stopped.

Jane McFadden:
You know what I really loved? At that age, and we didn’t know anything about anything at that point, I’d try and do what other parents were doing and it wouldn’t work. And then I’d be devastated. Like, well, what’s wrong with me? Why is it? And they’re like, you’re not following through enough. You’re not enough. And I’m like, it doesn’t seem like it’s working.

Dina Robertson:
Yeah.

Jane McFadden:
You’re not being consistent enough. And I was like, I’m literally saying the same thing over and over again.

Dina Robertson:
Dogs. It’s like, this is how you train a dog. This is how you get… It’s got the one that’s like not doing it still.

Jane McFadden:
Yes, very much so.

Dina Robertson:
That’s exactly what it’s like. And then when you’ve got no one around you who’s got any kind of experience in that or even had kids, you’ve got nowhere to turn. I literally have no idea what I’m doing.

I definitely thought that there was something going on with her ability to focus or pay attention to things. Even when I was speaking to her, I knew she was just looking straight for me. And it wasn’t like she was ignoring me to be naughty. It was more that she is just not there. She just wasn’t there.

And so I would say something to her or ask her to do something. And she’s just like, she’s on and she’s doing her own thing in her brain.

Jane McFadden:
Yes. But the first pediatrician, it was like a 15-minute consult, hundreds of dollars.

Dina Robertson:
I said, these are the things that we’re struggling with. No, I don’t see any behavioral blah, blah, blah. She sat here for 15 minutes and behaved herself.

And I was like, well, of course she would. She’s in an office with another adult woman who she’s never met before. She’s hardly going to be climbing on your desk.

Jane McFadden:
How old was she at that point?

Dina Robertson:
I think she was probably about three or four.

Jane McFadden:
Okay. And did she, do you think she was like trying to please or was she just generally a little bit better out in an office with another figure of authority and it’s only 15 minutes, so she could hold it together?

Dina Robertson:
Yeah. She could hold it together for, like you said, out with another adult who she doesn’t know or somewhere she’s never been before. And it’s a short period too. It’s a very short period.

Jane McFadden:
Yes. Very, very short.

Dina Robertson:
One consult, that was it. And at this point as well, she had been asked to leave her family daycare because she was so disruptive.

Jane McFadden:
Sorry while I laugh. When you laugh, that’s like I’ve lived that, like I’m not laughing at you. I’m just laughing at the situation because I’m like, okay, so this is three or four year old girl that’s been asked to leave a family daycare, which I don’t think they do lightly. And the pediatrician has gone, oh no, she seems fine. She’s clearly fine. Sorry. I don’t know why I’m laughing.

Dina Robertson:
It is funny though. Like we laugh. It’s kind of ridiculous.

Jane McFadden:
Yeah.

Dina Robertson:
But yeah, because the family daycare, yeah, I just couldn’t, she’s like, I cannot, I can’t deal with her anymore. She’s so disruptive. All the other parents are complaining because the other kids couldn’t sleep. And naturally my response was rage and embarrassment. So I was like, oh my God.

So I, yeah, that did not end well for anybody.

Jane McFadden:
I’m just laughing because every time I go to get my son from kindy, they like always want to have a small meeting with me. And then like the prep won’t take him without having a meeting with them first. And like, I’m just cringing inside because every time I go there, it’s like a half an hour meeting of just like everything he’s done that day. It’s just so embarrassing.

Dina Robertson:
Yeah.

Jane McFadden:
Yeah. But yeah, no one else thought that that was concerning. I took her to another psychologist.

Jane McFadden:
How long after, can we timeline it out a little bit? So she’s three or four. She’s at the pediatrician. Did you like wait a little while and then go, no, she’s still not right. Six months later. Or what was the timeline like?

Dina Robertson:
Yeah. I think she would have been in primary school by that point. So she probably would have been in about… so this is when we’re going to the psychologist. She would have been in about year one.

Jane McFadden:
Okay. So take it back. Okay. So you’re at the pediatrician and she’s three or four. You leave pediatrician, even knowing that the family daycare lady has said that and effectively expelled your three or four year old daughter from daycare, right? The pediatrician says she’s fine.

Did you believe pediatrician or did you then go, pediatrician has no idea, but I’m just kind of like over it and I’m just going to wait. How did you feel? And then what made you go back?

Dina Robertson:
I thought maybe I was off like with my thinking that there was something going on. I thought the pediatrician, surely she would have picked up on something if there was something worth looking into. I pretty much just thought it was me and my ability to be a mum. And I was just like, well, maybe I’m doing something wrong. I’m not, I’m too hard on her or I’m too sensitive or am I, are all kids like this? I don’t know.

Jane McFadden:
Can I just say as well, of course you thought that because I’m sure you’ve had a lot of negative messages come your way over the years, you know, being neurodiverse and getting a lot of more negative feedback and negative experiences. So then this happens. And of course we, as the neurodiverse mum go, oh, there’s something wrong with me. It’s my fault.

Dina Robertson:
Yeah. Oh, well, I’m the adult in the situation. I should know better or I should be able to work it out. Surely I’m old enough to be able to determine what’s going on with my daughter.

Jane McFadden:
Yeah. I’ve been there. They’re similar ages with my daughter. I totally get it. I had the same thing. I was like, oh, I just need to do more parenting courses because obviously I’m crap. Continue on. So you go to see the psychologist when she’s in around year one.

Dina Robertson:
Yes. And so she started school by this time as well. And for the most part, that was pretty good. And she started prep. It was a lot of that anxiety, just with getting her to go to school. Obviously she’d been kicked out of a daycare so she knows that she might not be accepted in places. Now I’m sure that would have had a lot of impact on her.

She changed quite a few daycares too as well for other reasons. And so I’m sure she went into school thinking like, oh, this is going to happen again. For prep, she pretty much just, she was okay. Flew under the radar. No big learning issues. So everything’s good.

Year one, she had a really lovely teacher that she liked, which makes a huge difference. She really felt very close to her. And again, just flying under the radar with grades, keeping up okay.

Behavioural, this is where it started to be like she would go to school. They would say, she’s great at school. She’s perfect at school. Then she’d be home at night or in the afternoons and the wheels would just fall off massively. And it would just be out of control.

Jane McFadden:
So would you mind giving me some examples? Because a lot of just like neurotypical parents go, oh yeah, the afternoons are so difficult. I’m always like, I don’t think your level of difficult is my level of difficult.

Dina Robertson:
Yeah. That’s what I always wanted too, because I was like, no, it’s really crazy. But she would come home and you could tell she had just run out of any ability to be rational, even just use her words, any ability to follow simple instruction, do anything. So it would just be like, and then just the energy as well.

It’s like she had been holding all this energy all day long and she got home and it just exploded. So she’d just be doing a thousand activities. She’d be, if you ask her to stop something, she’d just scream at you. She’d yell at me constantly. She’d be jumping off things. She’d be, I’d be asking her to have a shower and she’d just be screaming at me about it.

Jane McFadden:
Like they’ve run out of compliance. Like I’ve said, yes, all day to things that I don’t want to do. And now I was going to have a shower, but now you’ve asked me and I’m definitely not. Like, yeah, like next level.

Dina Robertson:
I cannot comply with anything anymore. Yes, absolutely. She had zero ability to comply. And then it was also just, if she didn’t want to do something right then, if she didn’t want to go to bedtime again, that’s when bedtime really just went out of control, trying to get her into stay in her bedroom or in her, like getting her to stay in her bed was impossible. She would just come out of the room. It would go on for hours.

She would scream at me. If I asked her to go to bed, she’d storm off down the stairs and she’s only like six years old. Like she’s a little girl, but she was just… so then she’d go to school petite as well.

Jane McFadden:
Right. And then we’re all tired. And I think the other thing that was different for us compared to like a neurotypical family, which I couldn’t work out, was the fact that it went from the minute she walked in the door in the afternoon until the minute she finally passed out.

Like there was no break at all. And I think neurotypical people are like, oh yeah, he had a bit of a tantrum or like yelling for 20 minutes when I asked him to brush his teeth. And I was like, yeah, 20 minutes, I could probably handle that. But from 3.30 until 9.30 at night.

Dina Robertson:
It’s actually a really long afternoon.

Jane McFadden:
When you say after school, it’s like, well, that’s actually like six hours.

Dina Robertson:
Yes. When they don’t go to bed, it could be like six, seven. I have a nine o’clock every night. Like it’s exhausting. And then I have a 4.30 AM on the other end, different child. There’s no relief to it.

Jane McFadden:
I totally get it because I have one that won’t go to sleep. And then she also won’t get up in the morning. And I have one that will go to bed, but won’t stay in bed in the morning. So actually I get probably about six hours sleep at night. It’s great.

Dina Robertson:
Yeah. Well, Ruby would do this, but then she would also get up at the… she would be ready to go. Like she’s ready to go. Endless. It was that every day, all day. And it was exhausting.

Dina Robertson:
And so this is when we took her to the psychologist. Actually, it was probably around the end of year one, start of year two, because her year two teacher, again, she had gone from having a year one teacher who she loved and bonded with, super nurturing. And maybe really liked her. And really got along well. And then she went to another teacher who was very old school, but you knew not to fuck around in that classroom.

Jane McFadden:
Different teaching style, right?

Dina Robertson:
Yeah. And so Ruby’s trying to navigate that. She’s just like, she’s so scary, even though she’s not being mean, but she’s scary.

Jane McFadden:
I know I can’t do anything wrong. Feel sorry for these kids. Hey, can you imagine going to work? And then like every year you’ve got a different boss that was completely different, but different expectations. Can you imagine that I’d be like, I’m going to quit this job, it’s shit. I just feel sorry for kids, to be honest.

Dina Robertson:
Yeah, it was awful. It was such a huge change for her. And then also just, you would know, like just with between year one and year two, the work that they do is huge. It’s a huge difference as well. So, and that’s when we decided to take her to the psychologist because her anxiety with going into school was really taking a toll on everybody. It’s too much.

Jane McFadden:
Yeah.

Dina Robertson:
So this psychologist, I took her to, I was like, it’s the behaviour stuff in the afternoon. It’s the anxiety. And I think she had two sessions or three sessions with Ruby. And it was like, because she was quite little, it was more like play-based.

Jane McFadden:
No, they… yeah. I mean, they can’t do proper therapy, sit down and talk with a child, especially with that kind of energy.

Dina Robertson:
Yeah.

Jane McFadden:
So I suppose play and act.

Dina Robertson:
Yeah. Correct. Yeah. So, and her thoughts on it were because Ruby had asthma and she had been hospitalised a few times. And one of those times she did have to go in an ambulance and she was saying that she was referring a lot to that in her play. And she said, maybe she’s developed some anxiety from that.

Jane McFadden:
And I was like, okay. I was like, but this has been happening before she was even really had asthma. I was like, but she’s always just had this little… so all of that behaviour has come from anxiety around having an asthma attack. That’s probably not something I would have connected, but hard to know what that person was thinking.

Dina Robertson:
Yes. But okay.

Jane McFadden:
That wasn’t where I thought that was going.

Dina Robertson:
No, either was I.

Jane McFadden:
So how did you receive that? What were your thoughts?

Dina Robertson:
I was like, okay, maybe that’s what it is.

Jane McFadden:
So you’ve been told twice now that she’s fine and you’re thinking she’s clearly not.

Dina Robertson:
And the really hard part is, which anyone who’s been through the diagnosis or assessment process would know is, especially with girls, in my experience, is no one else sees this behaviour.

Jane McFadden:
No, they don’t. No one can back you on it.

Dina Robertson:
No one can verify it. Right. And it’s like the diagnostic criteria is like, does it happen in other parts of their life? And you’re like, no, she’s six. No one else sees it. She’s been sent to a school. And also with me, like she’s been told that this behaviour is not acceptable. Of course, no one else sees it.

And so it’s just, you’re telling these people these stories and they’re just like, oh, okay. And again, it’s all relative, isn’t it? Their idea of it is not the same as yours.

Jane McFadden:
So do you know what I mean? Like I have a friend who always talks about their child. And when she actually tells me in specific examples, I’m thinking that sounds like an easy day for me, but it’s relative to her. And I don’t want to take that away from her. I’m just saying her bad day is not my bad day.

So I wonder if the professionals look at the child, look at you and go, well, maybe it’s that she just can’t cope. Maybe the mum has got no resilience and she’s saying all of these things. And actually it’s just a 20-minute tantrum. They all do that. I mean, how do they know, I suppose?

Dina Robertson:
Yes. And that’s what I think too. I’m like, am I going in there looking totally unhinged and, you know, like I’m spiralling because I am.

Jane McFadden:
And you know what? I did this course recently and it was like training assessors. And they were saying, they actually said in the course that often mums are really desperate in there. Like they’re just like so intensely listing everything because they are so intense about it.

And they were saying it’s difficult to know—this is an assessor course—what is a woman desperate for their child to be helped because they’ve been turned away and there’s a real issue, or someone who may not be fully, I don’t want to say crazy, but like someone who then might be possibly really suffering from their own mental health problem. How do you know? Because the child presents okay.

Dina Robertson:
Yes.

Jane McFadden:
How do you know? How do you know? And that’s when they get the teacher report, which then sometimes doesn’t show anything. And then they immediately go, well, there’s three people, two are saying this and then the mum is not right.

Dina Robertson:
Yeah. And it can be so hard as well as a parent when you are trying to, again, you are desperate a lot of the time. Well, I always was very desperate and you’re trying not to look too desperate, but then also it’s so hard to go in there and be able to give, even now, like I still struggle, like be able to give like clear examples of what is going on when you don’t really understand what is happening.

All you know is that it’s not right. And you’re just like, I don’t know.

Dina Robertson:
And you’re also battling your own neurodiversity. So you’re battling your own ADHD at this point to try. And so I’ve got a plan now that I’m about to put out on the website. And one of it’s like getting organised before your kid’s appointment.

I could barely write it because I just thought this is really hard for people to do. And so then I’ve got suggestions in that body doubling with a friend, getting a family member, taking videos. But even then I’m like, that’s hard.

It’s like telling someone who’s poor, they just need to go and pay all this money for something. It’s like, but that’s really hard for them. So it’s a cycle where maybe you’re not prepared as much as you should be.

But is that a symptom of your own neurodiversity?

Jane McFadden:
Yes. And is it also just because the assessment process isn’t taking that into consideration? And if you are going in with these concerns about your child, do they then need to say to you, okay, we need something very specific? Or is there like some timeframes or something that we could look at where, yes, it’s going on for six hours, that’s a red flag. Is it, I don’t know, but there’s got to be something that makes it easier for people to identify what’s actually happening.

Because yeah, like you said, how do you know whether it’s the parent or the child?

Dina Robertson:
And then I think one of the barriers that we’ve got is that the medication for ADHD is a controlled substance. So people can abuse it. And so then the pediatrician, the psychiatrist is sitting there with a controlled substance, and they need to be sure before they prescribe that. So like there’s so much going on.

Jane McFadden:
I do, I am desperate to hear though, how did it go with your daughter? So the psychologist said it could be related to the asthma. I’m really struggling with that, but okay, let’s just leave that there.

Dina Robertson:
So we, not long after that, we ended up moving. So this was in North Brisbane, and then we moved to the Gold Coast. So she started a new school in year three. She actually did really well. And it was amazing. She did quite well. She made one friend on her first day, and it was a godsend.

Again, kind of just like flew under the radar with grades and stuff. Didn’t like school, didn’t really stand out grades wise, didn’t stand out behavioural wise.

Jane McFadden:
That’s a good thing in my life, but okay.

Dina Robertson:
Yeah, like just fake it till I make it kind of vibe, same as me. So I was just like, oh yeah, cool, whatever. The anxiety got really bad though, to the point where I was not being able, like I couldn’t take her to school. I would go to drop her off, and then I’d have to just keep driving because I couldn’t get her out of the car.

Jane McFadden:
What was she saying? Like just an example for me.

Dina Robertson:
Yeah. So she just, she was saying she was just too scared to go to school. She was too scared to get out of the car and walk in. She was too scared of things like, I don’t know where my friend is. Like, is she at the classroom or is she in the eating area? I don’t know where she is. Which way should I walk? I just don’t like school. Everything. It was just like everything about getting out of the car into the classroom was too big. It was too much for her.

Jane McFadden:
Okay. So it’s not even just, where’s my friend? So you can’t even go locate the friend and then she’s fine. It’s like there’s so many problems and it’s just huge anxiety, spiralling, catastrophising.

Dina Robertson:
Yeah. Full on spirals in the car at 12 o’clock.

Jane McFadden:
Yeah. I’ve been there. That’s tough.

Dina Robertson:
Yeah. And so I would just, and hopefully on the days when I wasn’t working, I’d just keep driving and be like, okay, cool. We had to do that quite a few times. And I did raise it with her teachers in those years from like three to six. It was on and off. She’d go through waves, like most people, she would go through waves where she’d be really bad for a while. And then she’d have like a term or maybe like half a term where she was okay.

Jane McFadden:
And the teachers were saying she’s fine at school?

Dina Robertson:
Yeah. Apparently she was fine at school.

Jane McFadden:
Oh my God. Wow. Okay. This is a fucking long time.

Dina Robertson:
And her grades were okay?

Jane McFadden:
Oh, so nothing to worry about because her grades were okay. She wasn’t being disruptive. So what? She’s not crying and having a panic attack. So she seems fine. Anyway, sorry. That just pushed my buttons.

Dina Robertson:
Yes. But that’s exactly right. She wasn’t doing anything that was warranting them giving her the attention or catching them off guard. She wasn’t doing anything bad enough for that to raise any alarm bells.

Jane McFadden:
Look, and in fairness to the school, I’m sure they’re overwhelmed. They’ve got reactive, explosive kids. They’re doing the best they can. They’ve got a girl that seems fine. Why would they? And it’s not the teacher, that’s the education system and the amount of kids they have per teacher. So just being clear, I know we’ve got a lot of teachers on the podcast. I actually love teachers. It’s the education system I have a problem with.

Dina Robertson:
Yes. And I actually love that you said that because I was already like, don’t go on a rant. I could never be a teacher myself. Kudos to those who can and love it. But yes, the system is so broken. It’s just so broken.

Jane McFadden:
So yes, we’re very clear. It’s not the teachers. Okay. So three to six, she seemed fine. Let’s air quote that.

Dina Robertson:
‘Fine.’

Jane McFadden:
That sounds ominous.

Dina Robertson:
Fine. And so at this point in time too, so this goes on from, like I said, three to six, she starts to get hormonal. Year five, year six, like hormones are through the roof. Then she gets her period. I feel like any woman, female with ADHD could appreciate what that’s like.

Jane McFadden:
I still don’t have tampons when I need them now. And I’m 37. So good luck. I thought of that this morning. Thinking about talking to you, I was like, it’s just the simple things like 39 years old. Now you’re going to need tampons. Why didn’t you buy them in the groceries? I don’t have them.

Dina Robertson:
I had to ask Ruby for a tampon last weekend. I think I will get organised when my daughter gets her period. I’ll probably make sure she has what she needs. And then I’ll still wander around with toilet paper.

Jane McFadden:
That’s exactly what happens.

Dina Robertson:
So that’s exactly what happened to us last weekend.

So this anxiety thing keeps going on with Ruby. And we start to another psychologist because I’m like, okay, we’ve got to do something about this anxiety. But at this point, I’m still just like, oh, she’s an anxious child, anxiety.

Jane McFadden:
I mean, you’ve had her seen to twice and they’ve said she’s fine. So I mean, okay, I would be doing the same thing.

Dina Robertson:
Yes. And so we go see another psychologist. At this time, Mark is also diagnosed. So this is like, it’s just, it’s a hard timeline just with our whole situation.

So she sees her for a few sessions and I say to her, the psychologist, I’m like, well, I’m worried about her anxiety. Since I booked this with you, her dad’s been diagnosed with cancer and is very unwell. So worry about her anxiety is like through the roof.

Jane McFadden:
Yeah. And now you’re in a very complex situation too, because it’s like, well, what was there before and what was there with now her father having that diagnosis? Where do you start with that? How do you even pull that apart? Like it’s just, it’s impossible.

Dina Robertson:
So that psychologist, I don’t know, I just… oh yeah, she’s got a bit of social anxiety, like try this. I’ve given her some techniques about going to school, blah, blah, blah. And then again, with Mark being sick, that takes the centre stage, understandably. She didn’t really get a lot out of her.

And then we ended up having another blow up about something because, because I’m crazy, but I… she tried to charge me for a cancellation fee when, this is such a random story. She tried to charge me for a cancellation fee on a day where I couldn’t take Ruby in. Literally on the day I had to take Mark to the hospital because he’d been pronounced down there, had a massive blood clot.

So I said, I can’t bring her. I have to take him to the hospital. I have no one else to bring her. She’s like, okay, no worries. Then she sent me a bill for $50. I was like, no, I’m not paying that.

Jane McFadden:
Yeah. I mean, I understand a cancellation policy, but you always have an extenuating circumstance.

Dina Robertson:
I was like, what planet are you on that you think that that would be avoidable? So we move on. So that’s another psychologist. So cross her off the list. She’s gone.

Mark gets sicker and sicker. And then my psychologist, and then I start to research ADHD in girls. I don’t even know how I came across this. I start to research ADHD in girls. And then I think, fuck, maybe that’s what this is with Ruby. That would make complete sense. So many boxes she ticked.

Jane McFadden:
Was this social media?

Dina Robertson:
I think so. TikTok. I did get a lot of stuff from TikTok and because I’m ADHD too, obviously, then I hyper-focused and I just went down there. Yeah. And then I just went down the rabbit hole.

Jane McFadden:
People are like, oh, social media doesn’t know. Seems like it knew this time. But anyway.

Dina Robertson:
And for me, I’m like, yes. Okay. You get information from people who aren’t medical professionals, but they do have lived experience. And I’m like, for me, that helps actually way more.

But anyway, my psychologist happens to put me on to another psychologist who she knows, who does specialise, has a special interest in ADHD in children. And she gave me a list of four names.

I ended up going with this particular one and she ended up being an absolute godsend. Mark had died.

Jane McFadden:
I’m sorry.

Dina Robertson:
So now we’ve gone from that to she’s grieving the loss of her dad. I’m completely off the rails, obviously. But she was amazing. And she is ADHD herself. She was late diagnosed. It’s a special interest of hers, which obviously helps.

And we had two sessions with her where I was giving examples of discussing things with Ruby about how she struggles at school with focusing. She was able to ask her really specific detailed questions about how her brain works, which I don’t know what to ask. And then she straight away was like, we are absolutely assessing her ADHD and autism.

And then she went ahead and did it. It took from August to December. It takes a long time.

Dina Robertson:
Yes. And we finally got the diagnosis.

Jane McFadden:
Were you able to get on the NDIS with that paperwork?

Dina Robertson:
No. And I haven’t even looked into it or attempted because I’m just like, my sister-in-law is going through the same thing with her niece, who is autistic ADHD. I’ve just seen how much red tape is involved in that. I’m just like—

Jane McFadden:
Interesting point to note. Don’t you love neurodiverse people? Like I can’t put a Kmart fan together. I can’t do anything simple. Anything. I can’t read instructions in a prep homework book. But I have photographic memory with the NDIS legislation.

Dina Robertson:
Oh, amazing.

Jane McFadden:
Yes. So by the time this is released, I should have my NDIS kids guide up and running. My gift to you, it’s not formatted or anything yet. I will send it to you in a word doc. So I’ve written it down in a mum-friendly guide. More than happy to send it to you. It’s got templates, strategies, planning appointments, how to get on, all of it there. Because that will give you a lot of supports.

A lot of people go, oh, well, what’s the point? Actually, there’s a lot of point. The amount of support that I received from the NDIS is pretty amazing. And I’m very grateful for it. A lot of people bitch about it. They have a bit of a moan. Yeah, it’s not perfect, but geez, it’s good. Wouldn’t want to not be on. Put it that way.

Dina Robertson:
Yeah, that’s amazing.

Jane McFadden:
But let’s move on. I’m going to send you that when we get off this call.

Dina Robertson:
Awesome.

Jane McFadden:
So that should be good. Okay. So once you’ve got that diagnosis, if we go around in a circle about your daughter, then you would have gone back around, talked to your own psychologist, who wasn’t proactive, as we discussed earlier, but then got you to a psychiatrist eventually with the right meds.

Dina Robertson:
Yes.

Jane McFadden:
And how long was the process? It feels like we’re 13 years in at this point.

Dina Robertson:
We are, she’s 13.

Jane McFadden:
Yeah, I was about to say, this has to be over 10 year experience. So how did she feel with this whole thing?

Dina Robertson:
She was, I want to say, okay. I tried to do a lot of promoting, I guess, of the benefits or the positives of being neurodiverse and tried to lead with that as often as I could. She is embarrassed. So she didn’t want me to tell the school. And so now at this point, she’s just started high school.

Jane McFadden:
So that’s a whole other thing. She’s already hormonal, right? Wouldn’t it have been better to get in before that? Not that it was your fault in any way, shape or form, but an early diagnosis is better here. That there’s a lot going on. So her father’s passed away. She’s hormonal. She’s in puberty and she started high school and that’s when she gets the diagnosis. Jeez, that’s rough.

Dina Robertson:
Yes. And she had also started self-harming as well. So thank God I had already had her in with that psychologist who we love at that point, around that time.

Jane McFadden:
Kudos for you for continuing on. Honestly, you’ve had such a hard run.

Dina Robertson:
Yeah. And I’m just finally now, I feel like, well, no, actually, I don’t want to say that. I was going to say there’s a light at the end of the tunnel, but I’m just like, is there though? I don’t know. So yeah, that’s where she’s at.

And then so she doesn’t want to tell anyone. She didn’t want me to tell the school. I managed to convince her to let me tell just like the well, they’ve got like a wellness health. There’s a whole team of wellness at the school.

Jane McFadden:
Oh, that’s cool.

Dina Robertson:
And I don’t actually know what they do. Maybe they just sit in the back.

Jane McFadden:
Yeah.

Dina Robertson:
And so she didn’t tell her friends, but then she did end up telling her best friend who actually made a joke about it. So that was not ideal.

Jane McFadden:
Do you think some of her other friends are autistic and don’t know? You know, sometimes they move in packs. Like some of my friends have been diagnosed autistic. Not that I can, would confidently say they would be.

Dina Robertson:
Yeah. But she, yeah, she’s embarrassed about it. She’s not stoked about it. I’ve also just tried to let her know that the world’s not really built for her at the moment. School definitely is not. And that that’s okay. And we will work that out as we go. And then school is a drop in the ocean. So let’s just get through it.

Jane McFadden:
And I know that that’s not very positive, but I feel like it’s the reality for her. And I feel like trying to tell her otherwise would just be lying to her. So we’re very open about that. I say, you know what? If your grades are a bit shitty, no one knows what grades I got in high school and I’m fine.

I bet you she looks at you and goes, oh God. Cause you know how you said, I’m fine. And she’d be looking at you like, oh, she’s a shit fight. You know how we’re so hard on our mums. She’d be like, oh God.

Dina Robertson:
100%. That’s what she thinks. And she’s just like, you’re not fine. You are far from fine.

Jane McFadden:
So you’ve finally gone on this huge, long journey. You’ve had such a massive 13 years, right? Get to the end of it. The psychologist does the assessment and you know, it’s not great timing, but you get there. Okay. But she can’t medicate.

Have you then medicated? Because then what did you do? Did you go to paediatrician at this point?

Dina Robertson:
So I get this amazing, big, beautiful document, which is like so thorough, that goes to the GP. They’re just like, oh yeah, cool. And then I need to find a paediatrician or a child psych. I’m on the Gold Coast. So you’d think it wouldn’t be that hard. Impossible.

Impossible. And I’m like, how do people in like regional areas deal with this? But anyway. So I asked around everybody. I asked my psych. I asked the GP. I asked two different GPs. I asked my work counsellor. I asked everyone I know who might have an idea. Do they know a child psych who’s got open books at the moment? Not one.

I think one that actually came recommended was like a nine or 10 month wait. And that was private. And then the other thing is, which I’m sure a lot of other mums have experienced, is the last thing you want to do is go to another specialist. And then they want to do the same things again.

And by this point, Ruby’s over it. Like she’s checked out. And I’m like, the thought of going to someone and then them saying, oh, I need to do my own assessment. Or no, she doesn’t. Or no, we’re not medicating. The thought of that happening to me was just like petrifying.

Jane McFadden:
She’s been through enough. And she’s diagnosed. She’s a clinical psychologist. I’m sure she’s capable of diagnosing. Yeah.

One thing that I do have as a red flag is, and it might be a good learning point. I hope I’m not right. But the psychologist that diagnosed her, was she a clinical psychologist?

Dina Robertson:
Yes.

Jane McFadden:
So why did she not submit that to the NDIS? Because clinical—because one of the, I was actually concerned and point to note for anyone listening. If you go to a registered psychologist, they cannot submit the report to the NDIS. And some registered psychologists will go ahead and assess and diagnose kids and adults.

They can do it. But their report is, and I don’t want to say meaningless because I don’t want to discredit them. But, and it is important to get, but you are running a risk that you will have to repeat it because the NDIS will not look at a registered psychologist report. It has to be a clinical psychologist, a child psychiatrist or a paediatrician.

So you were running the gauntlet there. We know the clinical psychologist cannot medicate, but you can start off the NDIS process and experience and get the therapies whilst you wait.

Dina Robertson:
Yeah.

Jane McFadden:
So that’s confusing why she didn’t submit that, but we will have to chat about that later offline.

Dina Robertson:
Yes.

Jane McFadden:
I have an idea about why. It could be because she’s just moved here from New Zealand. I just feel like if they’re not across it, they need to have a disclaimer. You know, like for example, I know a registered psych who’s lovely and she does autistic assessments for female women.

Now, the reason she does it is because she puts it up there. It’s a quarter of the price. And she says, I can’t submit you to the NDIS. But if you just want to know if you’re autistic or not, I’m the lady for you. And it’s quickly two hours, 500 bucks.

And that’s what some people want and need. And I love the honesty from that psychologist’s point of view. They’re not going to go to the NDIS. They just want to know. But if you’ve got somebody that’s taking the big money, I think they need to be able to submit you to an NDIS.

They also need to be linked up with a paediatrician that will not repeat the same testing.

Dina Robertson:
Yes. Yes. And that was going to be one of my points about what needs to change. And I was like, you shouldn’t have to do all that work with a psych and then go do all the legwork again for a child psych or a paediatrician. Like they need to be linked in somehow. So this is a really good point of learning.

Jane McFadden:
So as a parent, and you just said, Dina, at length, which is completely true, that it’s very difficult to get in anywhere, right? So you’re finding an opening and you’re in, right? You’re not asking a lot of questions because you’re so happy and grateful that you’ve got an appointment, which I totally get.

But if that psychologist is not upfront, that they’re not linked in with the NDIS, they’re not linked in with the paediatrician and that their report is just really for you and you can take it somewhere else, but it’s up to the paediatrician or another psychologist whether they repeat the same testing.

When I did it with mine, like we went to a clinical psychologist when we were there for a year, we got on the NDIS and then we did the therapies and then I decided that we really needed to look at medication.

And I linked in with a paediatrician who read the report, knew the clinical psychologist and medicated first visit. And they didn’t repeat the testing. But that doesn’t always happen.

And I think those questions need to be asked from the parent. However, when you’re that bloody desperate and someone gives you an appointment, I don’t ask difficult questions either. So it’s really tricky.

And I’m gonna give my guide a plug because it is all in the guide and you can waste a lot of time and money.

Jane McFadden:
So what happened? Did you eventually get Ruby to a paediatrician or what happened there?

Dina Robertson:
Yes. And we just was a blessing, just luck, I feel. So I rang around all the sites, couldn’t get in. Rang around some paediatricians that were recommended, couldn’t get in. And then I rang one of these places and I said, is Blah Blah available? Oh, it’s not for six months or nine months. I was like, oh my gosh. She must obviously have the desperation of my voice as per usual.

And she said, oh, but we’ve got Dr. Blah Blah who’s free next week. And I was like, that’s equal parts concerning because why is he free?

Jane McFadden:
I was about to say red flag, why is he free? It’s like an unmarried man with no kids who’s 40 and you’re like, what’s wrong with him?

Dina Robertson:
It was, yeah. And I was like, I’m a bit sus, but I’ll take it because I don’t… like, what else can I do? And so—

Jane McFadden:
Oh no, I’d take that too. I would take that too.

Dina Robertson:
Yeah. And it was a blessing. We went there, he was actually super lovely. He didn’t want to repeat anything per se, but he also didn’t really like taking the report from the clinical psychologist. He agreed with her, which was good because I was like, I just want to get in there and I want a script for Vyvanse and or whatever he suggests. And I want to get out. Like that’s all I want.

And I don’t want to hear, she seems fine. She’s got eye contact. She’s got good speech. So it’s probably you.

Jane McFadden:
Yeah. And I didn’t want to hear, oh, maybe we should do this or maybe it’s this or maybe—

Dina Robertson:
Try this other anxiety therapy first and then come back.

Jane McFadden:
Yes.

Dina Robertson:
Yeah. And so I went in there and look, to be completely honest, I was just like, do what it takes. I was like, whatever he says, I’m just like, I’m going with it to try and get him on board. But he was actually pretty easy. Like I said, he didn’t really read the report in full because then he made recommendations to do things that we had already done, which obviously I just didn’t bother doing.

Checked out a few other things, said, yep, cool. We’ll try Vyvanse and come back and see us in Bla Bla and we’ll look at the dosage. We’ll see how she goes. So it was a win in the end.

But yeah, when I first got your questions and it said like, tell me about Ruby’s diagnosis journey or whatever, I first thought, oh, yeah, we’ve been pretty lucky because her clinical side is amazing and I love her. And then the paediatrician turned out… and then I was like, no, you’re not lucky. You’ve been flogging this dead horse for the last 13 years and finally something’s come out of it.

So I was like, even I’ve managed to like convince myself that it wasn’t that bad. But in hindsight, it’s actually just been going on and on and on and on and on.

Jane McFadden:
You know, it would have been really good if that clinical psychologist could have let you know about the NDIS, there’s carers payments. There’s a lot of things through Centrelink you can get through with the clinical psychologist report. Again, in my guide, also a paediatrician. I mean, that’s worth your weight in gold in terms of a report.

So it would have been really good if someone—and it’s usually the psychologist, not necessarily the paediatrician—that can actually talk to you about carers payments. There’s also isolated children payment if your child isn’t able to go to school. There’s lots of different things that you can actually get your child’s diagnosed before they’re seven.

There’s also what’s called a disaster payment. And I know that sounds awful. A diagnosis of autism, Centrelink actually says it’s a catastrophic event, which is pretty mean. But depending on your circumstances, there is a $10,000 payment, depending on the time and circumstances and your financial position.

So there’s actually a lot of supports there that I understand why Centrelink don’t advertise it. But it would have been really good if a practitioner could have possibly let you know. Again, I’ll send you all my guides. And I think that you would be in a good position to receive some of those things.

Dina Robertson:
Thank you.

Jane McFadden:
Now we’ve gone way over, which is fine because I’ve loved it. But is there anything that we haven’t covered that you think you’d need to share before we leave?

Dina Robertson:
I think the only thing would be for girls in particular, again, just banging on about the girls, but it’s just… I’ve lost my train of thought. Oh, okay, I’ve got it. People who are in community, who are like those first touch points for children and families—teachers, GPs. Well, the process I feel like would just cut out the GPs anyway, to be honest. I feel like that’s just a waste of time and money, especially no GP fulfilled these days.

But yeah, just those first touch points in the community. If they could just get across girls with ADHD, just different ways of ADHD presenting and autism. I guess like just take it on yourself to learn about it as well. Like don’t get frustrated when people are like, oh, that’s just the school system or that’s just how it is, or that’s just the blah, blah. And I’m like, yeah, but you’re still an individual human being who has the ability to go and learn these things. I feel like that’s your obligation if you are working in a job where you are spending so much time and have so much influence over these kids and you can have so much positive impact, why wouldn’t you want to be the best place to help them?

Jane McFadden:
Yeah, I agree.

Dina Robertson:
Because not one person I’ve crossed paths with has either agreed with me or has just been completely shocked and in disbelief. Do you know what I mean?

Jane McFadden:
I do. Really? There’s a few things I want to say. First off, I did an autism diagnosis course with a lady who was teaching about 60 psychiatrists, paediatricians and psychologists. I was super grateful to be there. I was 100% let down by that course. And that’s why I wrote that fiction book that I’m going to release.

Dina Robertson:
Oh, the book. Yes, I remember reading your post about that and thinking, what on earth?

Jane McFadden:
Yeah. So I had been looking forward to that course for about six months. It was very expensive, very hard to get into. I won’t say who it was done by, but I’d love to. And I really had to organise a lot on my end to, you know, nine to five, three days with the kids and everything. It took a lot of time and money for me to be there. I was very excited.

Get there and the person who ran the course runs training courses across the government, across all the public hospitals in a particular state. And she is one of the largest training organisations in terms of autism and ADHD assessment. She said multiple times that masking and camouflaging in girls is not real.

There’s no evidence. There is not as much of neurodiversity in females as there is males. And there is no clinical evidence that any of that exists and that people are saying that it exists, but it’s actually just like a bit of a personality type that people are labelling. But it’s not.

And she said repeatedly, we mark what we see. We mark the behaviour. We don’t ask any other questions.

There was actually a few people to their credit on the course that said, excuse me, every day. So it was a three-day course. Every day, at least two people asked, excuse me, but what about masking? Excuse me. I get a lot of girls coming in, excuse me. And she repeatedly said that it was not real.

What did not happen. I came home after the third day. And as I said, I’d sacrificed a lot to be there. And my hubby had sacrificed a lot to be there as well, financially and with the kids. And he was like, how did it go? How did it go? And I didn’t want to say for the first couple of days, it’s not going great. And I’m pretty disappointed, but that’s how I felt.

I’d also been nominated for an award, which I didn’t get to attend the ceremony because I was at the course. The last day came and I ended up just sitting down and crying when it ended, because I just thought this is the whole thing that’s wrong with this system, right?

I came home and I talked very openly about my Bunnings inflatable spa that I bought myself for Mother’s Day. It’s like 400 bucks, right? It’s like a $400 spa that you have to heat up with. So I bought a spa, you know, that’s sitting amongst the gas bottles and all the kids’ toys. And I blow it up and I just try and have a bit of a moment.

And my hubby is so beautiful. He heated up the spa for me and it was a Friday night and I had a couple of drinks. I don’t usually drink. I felt like I had to have a couple of drinks that night. And I broke down in tears to him and said, this is so fucked up. Like, I don’t know if there’s any point me trying. This is what I’m against.

And he said to me, Jane, you are such a fucking fighter. How about you do something about it? And I said, I can’t. I’m not a clinical psychologist. I’m not even a psychologist anymore. I classify myself as a neuroscientist, which is not in the position to fight these people. And I’m not a paediatrician. I’m not a psychiatrist. Those are the people that have to make change.

But they’re the people that are so busy. I think they’re the affirming clinical psychologists are the people. I think they’re the lived experience autistic people that have to make the difference. And I support them in any way that I can behind the scenes. I’m gonna promote this. There’s a couple of really good—I’m not gonna put it in the notes—Monique Mitchelson. She runs the Neurodivergent Walking Podcast. She has a neuroaffirming practitioner training. And I’m plugging that hard in the background. I’m doing what I can.

Yes. But the reason I wrote the fiction book was because it was the only thing that I could do. Because I thought, okay, I’ve got an eight-year-old daughter. I’ve been an eight-year-old daughter. I totally understand what it’s like to be an internalising little girl who was told there’s nothing wrong with you.

And I’m getting emotional about it because it makes me very angry. So I wrote a book from their point of view. To show how that feels and how that feels from the mom’s point of view to be turned away and told it’s your fault.

So, sorry, I get very emotional about it. But the book I’m hoping will make a difference because I, and I’ve dedicated the book very controversially to the practitioners and to the health professionals who do not believe that it exists. I’ve dedicated it to them in a very passive-aggressive Jane style. And I’m going to send it, that book, to all of those people.

Dina Robertson:
Yeah.

Jane McFadden:
So they can read through that child’s eyes how it feels. And I think parents, it’d be great for them to read it as well. If they don’t understand how it is and how it feels.

Jane McFadden:
Because when you have a child that you’re saying, and you know, it’s not even the mum’s fault because I’ve done it too. When my daughter used to take 90 minutes to put her shoes on for school. And I used to wake up and the dread come over me, right? And you just like, I can’t do this anymore.

And then people would say to me, just do this, just do that. Take away her TV, do this, do that. Write out a routine and give her a reward and a rewards chart. And it was only when I think she was in grade one and I dropped her off again in thongs and said to the teacher, I’m sorry, I can’t get her shoes on. I don’t know what to do.

And she put the shoes on for the teacher because she’s masking hard, right? And put up with it. And she broke down one day and I said, well, what does it feel like? She goes, you don’t understand. You don’t understand. I was like, well, what does it feel like? Tell me, because I don’t know. Help me. I don’t know what the problem is.

And she said to me, it feels like glass. It feels like it’s hurting me. And because I have always had a problem with sound. And she said to me, you know how you hate loud noises? And again, we didn’t know we were neurodivergent, right? So I just knew when it got really loud, I had to go outside.

And she said to me, you’re like that and you can’t stand it. That’s how I feel with my shoes. And I was just like, oh my God, what have I been doing to my child? It’s like putting me up against a speaker, blasting the music and telling me it’s not loud. And that was when I said, yes, you just don’t know.

I totally relate to this episode and this is why I was so really wanted to make sure you came on. I really want to thank you for your time because this is the kind of audio that I want people to hear to get mums to continue to advocate. And it’s shit and it’s wrong that we have to be so proactive. Why do we have to do it? Have we not got enough on? We’re neurodivergent ourselves. But it is on us at the moment. So I really thank you because I think you’re really doing something about it.

And I know it’s hard and it’s… you’ve got to be brave to do this stuff. It is a hard slog. I really want to, yeah, thank you for your time. And I will send you the NDIS guide and spread the book wide as far as you can. It’s actually to change the system. That’s what it’s for.

Dina Robertson:
Yes. And yeah, I think we both agree. That’s exactly what we need.

Jane McFadden:
Absolutely. And I’m going to say very openly on the website that any profits I receive from the book will go back into girls and women’s diagnosis. It’s absolutely not about making money. I just want to see change.

Dina Robertson:
Yeah. Amazing.

Jane McFadden:
Keep going. Well, we will make it together. Dina, thank you so much for your time. This has been a very long episode, but I reckon people will go the distance. Thank you so much.

Dina Robertson:
Thank you so much for your time.

Jane McFadden:
Yep, you too. The key message here is you are not alone. Thank you for listening. If you enjoyed this episode, follow us on Instagram or head over and join our amazing ADHD Mums Podcast Facebook community. Everything you do matters and helps to spread the word about what neurodiversity in females looks like.