Episode 5 – What Every Mum Needs to Hear from Top Autism Expert with Prof Tony Attwood

Jane McFadden:
Welcome to the ADHD Mums podcast, a safe place for everyday Australian mums to discuss their struggles with ADHD, motherhood and life. Hello and welcome to ADHD Mums. We have the most exciting hour I’ve had this year or last year or in the last 10 years, probably since I started having children.

We have one half of the Atwood and Garnett events. We have Professor Tony Atwood with us. Welcome to you, Tony.

Professor Tony Atwood:
Thank you there, Jane.

Jane McFadden:
I have been counting down just like Christmas Day, that’s where my life is at. So I’m so grateful for your time, Tony.

Professor Tony Atwood:
Thank you so much. Thank you. Excellent.

Jane McFadden:
If you don’t know who Tony Atwood is, I think most people in this podcast will know who he is. If you don’t, we will put all of it in the episode notes, so you don’t need to look anything up now. But just as a bit of an overview, Professor Tony Atwood is one half of the Atwood and Garnett events.

Dr. Michelle Garnett, unfortunately, was sick today. That’s OK, because we have Tony and I would have been devastated if he cancelled. So I’m more than appreciative of that.

Tony and Michelle both have over a combined 70 years experience. That’s seven zero. This has been very pedantic, almost autistic, like in over 80 years.

You know what, Tony? This makes me feel at home. Every single thing I say to my children is corrected and to my husband. So this is something I’m familiar with.

And plus, I’ve got such good ADHD, the details to me sometimes aren’t important. Yes, they have over 80 years combined experience. I could just read out all of their credentials, but just know that Dr. Tony Atwood is one of the most specialised and experienced professors and psychologists in autism.

Here’s Tony. So Tony, I just wanted to start off by saying I think I’ve done nearly all of your courses from your Atwood and Garnett events. Thank you so much.

They are so validating for a parent of a child that’s neurodiverse. I absolutely love them. And when I was right deep in diagnosis and stress and worry, it was a real lifeline for me. So those courses, I have to tell you, are so good.

Professor Tony Atwood:
Yeah, there’s not only the sense of clinical knowledge, it’s also personal knowledge with both our families. There is neurodiversity on both our sides. So we know this from a parent’s point of view, but also from the professional point of view. So we combine the two.

I think that’s probably what makes it so special because it is personal experience plus expertise in the area combined.

Jane McFadden:
It doesn’t get any better than that for me. What I really wanted to do was I thought, let’s deep dive into some of the stuff that might be beyond common knowledge. We can look at the differences with autism in girls, but let’s go in depth because that’s what I really love to do.

So we are going straight into one of the biggest things that I get DMed about, and that is the process of assessments, the way it works and how frustrating it can be, what changes could be upcoming, what we can do about it is the overall theme of the episode.

First question is that many of us mums of neurodivergent children are frustrated with the process of waiting a year or more for a paediatrician to have our daughter particularly then not meet the criteria of the DSM for ADHD or coming out at the end of an autism assessment and not meeting criteria due to masking or camouflaging. Is there any upcoming changes in this area because it’s such a big area that we talk about?

Professor Tony Atwood:
One of the problems of professionals is conservatism, and they’re often reluctant to change, especially if they weren’t trained on this all those years ago. Now our knowledge, but certainly of autism, but to a certain extent of ADHD, is very boy orientated, partly because boys in many ways externalise, they’re disruptive, they’re a problem, they annoy the teacher and so there’s a push really to get them recognised.

What we find is the girls tend to internalise, they suffer in silence, they blame themselves or they camouflage, they hide all their characteristics so they don’t want to be noticed. So the signs in the girls are often more subtle.

Now that means I’m not diagnosed, it means that whoever’s doing the diagnostic assessment needs to be trained and experienced in the subtle signals. I’ll give you a quick example, eye contact. And the paediatrician or adolescent psychiatrist, maybe psychologist says, oh can’t be autistic, they gave me eye contact.

The question is, yes they looked in the region of your eyes, but did they read you? It’s like saying, oh yes they can read, but all they’re doing is looking at a book and they’re looking at the pictures, but they’re not necessarily reading the text. So it’s really identifying, is this something that has been acquired or learned or is camouflaged and that takes a fair degree of expertise.

It’s the quality that matters, not the presence or absence of a skill.

Jane McFadden:
So it’s a big bug there that you do spend the year, it might cost a lot of money as well for people to go out on a limb, they finally get to the paediatrician after possibly getting turned away from the GP, the teacher saying it’s all fine. You finally get there to find that you don’t meet criteria in something that you as a mother know in your heart to be true. Sometimes as parents, we can see something going on and maybe there’s stuff going on in the family.

Are there any changes coming up? Because as this becomes more prevalent, people are talking about it more. Can we expect to see any changes in the criteria?

Professor Tony Atwood:
I think there will be, but I’ll go through several comments on what you were saying a moment ago. And that is, I trust mum’s intuition because they see things that other people don’t see. Sometimes the kids can hold it together, camouflage and suppress the ADHD or autism at school and it’s only there at home.

Now the thing is, parents may not have the vocabulary and the terminology used to describe it, but usually a parent is, should we say, going to be reasonably accurate in their description. The way they would describe it is it takes you several years to get a PhD. Now I would say that mum has an honorary PhD in the study of their child, so they should be looked on as having a doctorate in the study of their child.

They know their personality, what works and doesn’t work. And parents are often worried about things but may not be able to describe it in the way that the professional really understands.

Jane McFadden:
Yeah, exactly. And look, this is where I think TikTok and this podcast that I run as well, I think it’s really validating because sometimes it can put words into things that the parents feeling but don’t understand.

For example, when my daughter was spending 90 minutes putting her socks and shoes on every morning for prep, if I had been on TikTok and noticed that and saw that from a particular autistic or ADHD video sequence, I might have seen that as a sensory issue. But without seeing that, you don’t know and you just go back to forcing because you don’t know any better.

There’s all this talk about that the assessment criteria may change. Do you think that will likely to happen or is that probably not?

Professor Tony Atwood:
I sincerely hope it does because it’s devastating. It’s all deficits. And you think why are all these descriptions are all the things that go wrong. And that’s why a lot of kids don’t like going to see pediatricians and psychologists because it’s all the things that they do badly.

I often try and start off the session about what’s going right. What are you proud of? What have you enjoyed? Then go through the various issues and then end on the successes because otherwise the kid feels you only talk about what I do wrong. You don’t notice what I’m doing right or how I’m trying to cope with this.

So there can be all sorts of issues in seeing a professional that is also questioning why are the parents bringing this child to see me? And I’m sorry to say this, but it can be. Are they amplifying the characteristics, for example, for NDIS funding?

Now, unfortunately, in psychiatry, and I blame Freud for this, Freud said that most psychiatric problems are due to bad mums. In psychiatry, this continues, is that mum’s the problem. Mum’s the cause of this. If mum only got her act together and gave good discipline, everything would be OK.

It’s really looking at mum as an excellent observer and has phenomenal knowledge of that individual and needs to be listened to. We’ll have various stories that will speak volumes. So there’s a lot of credibility that’s going there, but it may not be perceived positively in the diagnostic assessment.

Jane McFadden:
So you mean more like that the mum’s after NDIS funding so that the child’s not really like that, but they’re just saying they like that at home, that kind of thing? Is that what you mean?

Professor Tony Atwood:
Yes, it’s basically a cry for help. I really don’t know what to do. I’m at my wits end. I’m burnt out. And so may then have a very negative approach because burnt out and needing support. So the clinician will make their own assessment. But of course, mum may be amplifying her characteristics, but then the child may be minimizing them.

Have you got in touch? Yes, I’ve got lots of friends. I’ve got eight friends. Do you meet outside school? No, but I’ve got eight friends there. We talk together at lunchtime and all they do is talk and then drift off, do all sorts of things.

The child themselves may be thinking, I don’t like this place. I know how to fake it and get through the exam and to pass it. And the passing means I’m not diagnosed.

Jane McFadden:
Yeah, and that’s sad, isn’t it? And then I also wonder if mums maybe amplify it because they’re so desperate they’ve been turned away before?

Professor Tony Atwood:
Yes, exactly.

Jane McFadden:
Yeah, so then they’re just really hammering and intense on all the worst things because they want to make sure that someone’s hearing them and something happens. That’s what I’m wondering.

Professor Tony Atwood:
But what they’re saying is, please take this seriously. I’m needing help and I really need to tell you and you need to listen to the problems that I face to know what real life is because for the 20 minutes, half hour in that diagnostic assessment session, you’re seeing an artificial behaved, best circumstances child, but you’re not seeing what goes on at home when they come home from school, when they can’t get what they want, all those sorts of things and the scaffolding and support that parents have to provide.

Jane McFadden:
Oh, that’s really interesting. I think I was probably really lucky. I went up to an equine farm to a clinical psychologist and I went to the bathroom and my three children interacted in front of two psychologists so I could go to the toilet and they were their natural selves.

And then we were very quickly ushered into an assessment room. And yeah, I agree with what you’re saying, because if I had to take them one by one into a small office, they probably would have been perfect.

Professor Tony Atwood:
It will. And one of the things that I sometimes ask parents to do, if they’re going to have a diagnostic assessment, is find out what the diagnostic criteria are. You can find them on the internet for ADHD and autism and have almost like a diary with one of the diagnostic criteria at the top of the page. And you, over a period of a few weeks, as we say, you write down quotes, examples, photographs, even videos on your iPhone that illustrate this particular characteristic.

So each of the diagnostic criteria, there are, shall we say, 18 in ADHD, there are six, to a certain extent, in autism. And for each one, you then have examples. Otherwise, you go away and think, oh, I forgot to mention that. I should have said that. Oh, what was I thinking? I was in a daze at the time. You’ve got notes to illustrate when it be a particular problem, the impulsivity, an example is, etc.

And videos will help enormously to see the meltdown, what it is really, because this person that they see, oh, they’re wonderful and delightful and cooperative and so on. But there are Dr. Jekyll and Mr. Hyde. There are times when they’re very different. And otherwise, the professional has to take mum’s word for it. But if she’s got documentation, a comment from the teacher, a grandparent, a video or a quote from the child, I really don’t cope with change at all. That quote is put in for the diagnostic criteria — difficulty coping with change.

Jane McFadden:
Oh, you know what? That seems so obvious when you said that. It’s a really great point, actually. And I suppose it comes back to as well, the neurodivergent woman and mum, the appointment’s coming and you think you’d be prepared. But then on the day, maybe you do think later or maybe the anxiety cripples you and you can’t think. It’s a great point to put that time in preparation, even if you have to maybe body double with a friend to do it.

Professor Tony Atwood:
Yes, it’s valuable information because some of it can be objective because it’s a comment from the teacher. And you keep that diary in a way readily available. That’s a good point. For the diagnostic assessment, I’ll write that down because that illustrates that point. Otherwise, when the clinician says, can you give me examples of, oh, there’s lots of them, but I can’t just think of one at the moment.

Jane McFadden:
Yeah. And I think that’s really important for kids and also for adults and for adult women, because sometimes mums, we get missed. There’s lots of people I know that have been diagnosed, for example, with breast cancer only because the GP has been vaccinating the child and then said, you haven’t had your whatever it is, your breast screen or whatever. And it’s only they’ve been caught because they were there for something else.

And sometimes I feel like mums cover up their deficits and say it’s okay when actually it isn’t. And maybe they need to do the diary as well about where they are actually not failing, but struggling.

Professor Tony Atwood:
Now, can I take up a point that you just said? Very important one. Both autism and ADHD, they come with friends and it is very rare to have just one diagnosis. For example, both of them have sleep issues. And so you may be contacting the GP for sleep issues and the GP may notice developmental history. Are there any sensory sensitivity? Oh, yes. Are they forever forgetting all their homework, etc.?

There is an association with eating disorders, a whole range of different conditions, anxiety disorders as well. It’s screening, not just for autism or ADHD, it’s those conditions plus their association. And that association may be the pathway for the diagnosis of autism or ADHD.

Jane McFadden:
Oh, that’s a great point. Yeah. Because you do see people that will list out, particularly online, they will list out a lot of symptoms of ADHD and autism when asked for a referral to a psychologist or suffering from burnout. And you never want to jump in and say something online that’s not correct, or I’m always very careful with that. But I think the awareness is coming, but possibly that diary entry analogy is a good idea for mums as well.

Professor Tony Atwood:
Yeah. And one of the things that you asked the original question, are there going to be changes in DSM? What I would like to see is a change, is to have a list of the positives. In other words, that their sense of hearing is phenomenal. Their energy levels at the beginning of an activity are phenomenal. Their creativity.

In other words, both autism and ADHD have the difficulties, shall we say, but they also have the talents. And we’re focusing on the deficits, which makes the person feel very negative towards the diagnosis themselves. Because the ultimate question is, what does the child or adolescent think of the diagnosis?

And so it’s also going through that great attention to detail, that flexibility in thinking, etc. That wonderful sense of humour, that degree of kindness. So it’s also looking at what are the positives associated with both diagnoses that are explored as well. So I’d like to see as a balance because otherwise the view is, this is an aberration that must be corrected rather than embraced and accepted and accommodations made.

Jane McFadden:
Oh, I love the way that you talk about embracing autism in your courses. It actually really reframed the whole thing for me early on. So I just thought that was incredible. I totally agree with you.

I think there’s so many things that we could discuss, but the diagnosis assessment and the NDIS process, listing out every single negative thing with your child, with yourself, is just so draining when there are those positives. And when you’re looking for positives, you’ll find them. When you’re looking for negatives, you’ll find them.

And we don’t want to view our children or our partner ourselves just through negative lenses of what we can’t do.

Professor Tony Atwood:
Now, another related issue is when these problems occur, often for mums, one of their first thoughts is, what’s wrong with me? Because one of the reactions is, what am I doing wrong? Or what’s the thought within me that is producing this? And actually, it can be very charming and good news when the diagnosis is confirmed. And I have sometimes said, it’s not bad parenting.

This is a problem the child is trying to cope with. You’re trying to do the best that you can. You don’t get this pattern of behaviours by bowel pain.

Jane McFadden:
Oh, absolutely. And one of my friends who has a daughter with ADHD, she said to me the other day, I just feel so bad for working full time when I was pregnant with her. And I said to her, it’s so interesting that you say that because one of the things that helps me sleep at night is I had my first daughter who I was completely not stressed at all.

I was actually on maternity leave pretty much the whole pregnancy. And I was absolutely not stressed, the most relaxed I’ve ever been. And her symptoms are probably worse than the ones that I’ve actually been stressed about later on.

And I did have a couple of stressful pregnancies, made no difference.

Professor Tony Atwood:
Yeah. Now you’ve raised another point there. And that is, if the child in question is your first child, your only child, then you’re not quite sure what is typical. Sometimes a grandma can say, no, this isn’t right. Or your friends who are having children at the same time.

And you compare your child with your friend’s children. That’s when you start to pick things up. But you do need to know what is normal. Should we say all the characteristics of autism and ADHD exist in the ordinary population? Nothing is unique.

So it’s basically saying, is this person beyond the usual expectation range? And it’s the pattern, not the presence or absence of a particular characteristic. It’s the pattern that makes the diagnosis.

Jane McFadden:
Yeah. It’s so interesting, isn’t it? As a parent, you don’t know. So I still remember being on the assessment couch when they were talking about my daughter trying to get me to be open to an ADOS. And I was like, not open at all. And then they were listing it off, trying to get some evidence to get me to agree, which was absolutely the right thing to do.

But when she was listing the symptoms, I was like, no, I do that. That’s fine. No, I do that. That’s fine. And then I just felt like I’d been punched in the stomach when I put it all together. I had to put my head in my hands. I’m like, oh, I just need a minute.

Professor Tony Atwood:
Now, Jane, you’ve mentioned something that’s very important because we’re finding a lot of referrals for diagnostic assessments of mums and their thought of autism has come through the confirmation of their son or daughter’s autism. And they say, oh, but I used to do that. That’s perfectly normal.

And then you’ll watch the clinicians go, right, things didn’t. It’s indicating that, as the Americans would say, the apple doesn’t fall far from the tree. There are many reasons why autism and ADHD occur, but one of them is it congregates in families in varying degrees.

So it’s really exploring the family history of similar characters. Sometimes I’ll ask, is your son or daughter like anyone else in the family? And my mum says, I was like that as a kid. Interesting.

Jane McFadden:
There’s nothing quite like that experience. One of the reasons I do the podcast is because it’s so good to have a community of people that get it, because when you drive out of that, you just feel so alone and deflated and confused. So it’s a hard one.

Professor Tony Atwood:
Can I make a comment on that? In all what are called developmental disorders, you’re having something which is often a developmental delay. And for example, toilet training. Typical kids, non-developmentally disabled kids, toilet train and off and away. But for a kid who’s not toilet trained, he’s three years old, and then he’s toilet trained. You don’t.

But all your friends are. Yeah. So what’s wrong with that? That’s where you need parents of similar kids who also open the champagne to share the joy of what has been achieved because they know the effort and the significance of that sense of achievement.

So it’s an audience that can not only give you encouragement, but also applaud what you’ve achieved because they know what it’s all about.

Jane McFadden:
Oh, I totally get it. My son actually turns five tomorrow. He’s five. We’ve been toilet training for two years, like hardcore. And I said to my husband today, it’s like, let’s have a champagne tomorrow because I think we might have toilet training.

And you’re right. Like, there’s no one really that quite gets it when you’ve spent two years every single day and you’ve cleaned up undies and it just goes on and on. And you’re like, you think you’ve cracked it, but everyone else has cracked it what seems years before.

Professor Tony Atwood:
Yeah. So, yes, you need an audience of applause for what you’ve achieved because they really do understand the amount of effort that went into it.

Jane McFadden:
Oh, absolutely. So if we go back to the assessment tool for just a moment, what do you think would be the trickiest criteria within kind of ADHD and autism assessments that a lot of women or girls get tripped up on? And probably, let’s say they do want to do the video, but they can maybe only do it for a couple of tools. What would be the trickiest ones you think?

Professor Tony Atwood:
The essence of autism is the social. It’s understanding people. And that’s something that’s variable in interpretation. For example, in my clinical experience, there are autistic kids that I’ve diagnosed. And I will say this within 15 seconds. Yes, because it’s the way they talk, walk. You just go, yep, I’m sorry, but I’ve got to go through all the formal parts. But I knew when they walked in the door.

I’ll give you an example. This was a kid I saw who was four years old and collected him with his mom from the waiting area, went into the clinic room. And she sat down and said, can I help you? And she said, I want to know if he’s autistic. And I said, yes, he is.

And she said, how did you know? Because from when I picked him up in 10 seconds, he gave me a lecture on petrol bowsers. Four-year-old kids not to do that. It’s the way he did it, and his enthusiasm was up. And it was confirmed.

There are those that are very obvious and an experienced clinician can pick it up very quickly. But what you’re doing as a clinician is you’re looking for alternative explanations for this characteristic. And more importantly, how is it being acquired?

Another illustration is in diagnostic assessment for autism. In the ADOS, as you mentioned, is the ability to use social gestures. But what you find is the gesture of, I don’t know, I don’t know. And that’s the same gesture every time. It’s stylized. It’s the right gesture.

And according to ADOS, tick the box, they use the right gesture. But there’s no variation. It’s an imitation. So you have to look for some beyond the superficial and go to deeper level. That requires skill.

And when you’re doing this, you are aware that this is an anxiety provoking situation. So are any issues due to anxiety? And you’ve got to really go through the quality. For example, when I’m dealing with autistic adults and ADHD adults, sometimes they have read a lot on the internet and you suddenly think, hang on, this is a textbook answer. I need a real, that’s not in any textbook.

No, that’s a risk. That’s not a bet. So what’s happening now is people are much more knowledgeable. And you just got to check for genuine instances that you realize that’s not coming back from a book that I’ve written, for example.

Jane McFadden:
Oh, okay. Yes. Someone just spits back out the answers. That’s a great point, actually. Is there anything that we can do as mums to try to prepare better to get a really accurate assessment?

Professor Tony Atwood:
Okay. I think one of the things is you do need to talk to the child about what’s going to happen. Why are you there? And it’s a new situation. The person is an adult. They’re not a teacher. They’re not a family member. They’re asking personal questions about you. But where is this going?

So you almost need to prepare them for the expectations, the culture, the social expectations in particular, or a diagnostic assessment. So they need to be encouraged to be honest in this situation. And honesty is going to be important.

Mum will be as honest and sometimes may say things you’re not necessarily happy with, but this person needs to know. But it does mean to say that you must be honest. If it may be in attention span, for example. No, I’m fine. I’m okay. But actually, when you get home, you say, I was drifting away. The teacher’s, I can’t concentrate.

It’s those sorts of things. You’re not in trouble. You’re not getting consequences or punishment. They just want to know the truth. It is not an assessment of you in the sense of being in trouble.

Jane McFadden:
Okay, so they’re not going to then cover it up. So one of the biggest issues that I see, and I just get DM’d about it all the time, and I do think it’s probably not the most efficient process to say the least, but a lot of mums with neurodivergent children, or they’re people that want to get their children assessed, they’re seeing some things.

They often, I’ve noticed, will go through to a clinical psychologist first. One of the reasons that they seem to do that is because it’s easy to get in. I know clinical psychs are really difficult to get in, but paediatricians are even harder. And often as well, you can get in without a referral from the GP if that’s a barrier. That was a barrier for me. I couldn’t get a GP to write me a referral to a paediatrician.

Sometimes they’ll find themselves at a clinical psychologist because they’re purely desperate. But it can be a great thing too, because they can get on the NDIS and they can start therapies. I have so much gratitude to the clinical psych that picked up all three of my children when I went to the toilet that time. But then at times, then it feels like such a stupid process, if I can say that, because then at some point when you’ve done all the therapies, you do begin to consider medication, possibly, if that’s the right fit for you.

But then, of course, the clinical psychologist that’s been treating you, or that’s been doing the therapies, can’t prescribe anything. And you have to start again with the paediatrician, which is just, it can be really heartbreaking.

Professor Tony Atwood:
It is a problem. And certainly medication can be valuable. It is stimulant medication, often in ADHD, and that’s been around for decades. Usually medication for autism is for anxiety, which can be a major factor.

Now, the difficulty is that there may be recognition from the clinical psychologist and from the parents that we’ve tried everything, but there’s a missing part of the puzzle. And although we’ve tried all these various strategies, it’s still not working as well as we would like to do. Is it worth experimenting with medication?

Now, should we say the stimulant medication is a restrictive medication because it has street value, it can be misused, drug addicts will take it for a variety of reasons. So the government is very concerned if it was freely available, in other words, if psychologists could prescribe it, will that increase the amount of stimulant medication on the drug illegal market?

Now, what I would like to see considered is GPs being able to prescribe, because they’ve known the family for that length of time. They had the reports, they’re the central hub for a lot of assessments. Everything goes to the GP. And I do think that GPs, in a GP practice, to have at least one of the GPs, if not all GPs, have training in the do’s and don’ts of prescribing stimulant medication, because that’s much easier than going to a complete stranger. And you say, but I’ve got to go through it all again with the risk of not being believed.

I would like to see GPs more able to prescribe. GPs can prescribe medications for anxiety. That’s not an issue, but it is for ADHD. And what we do find is that the value of medication is very important, especially for ADHD adults now.

Jane McFadden:
Yeah, exactly. I went down to a conference in Brisbane. I was actually hoping you guys would be there on neurodiversity. It was a three-day API. And the consensus in the room when they had a big round table at the end was it would be great for clinical psychs to work in with the GP, particularly to minimise just having to go through it again for the child and for the adult. Sometimes I lay awake at night and I dream that would be a possibility.

And then sometimes I wonder if that’s just like asking for the world and it’s not possible. Do you think that would ever actually happen? Do you think we’re close?

Professor Tony Atwood:
I think it’s possible. Certainly, I know that in the United States, in some states, clinical psychologists can prescribe certain medications. So that precedent has been set. In my own clinical training, I was trained in the UK in psychopharmacology to the same level as psychiatrists. However, in Australia, you can’t prescribe.

And it’s not that I want to prescribe, but what I don’t want is a delay in accessing something that could be very helpful. On the topic of medication, I do think it’s very important that the child has a say in that medication. And yes, you may check with the teacher and so on, but the person telling you is the child and you really do have to check other side effects, are you okay with this and so on. They are, shall we say, the major voice to be listened to in terms of medication.

Jane McFadden:
Yeah, absolutely. I think that makes complete sense.

Jane McFadden:
If we move into autistic mothers of neurodivergent children and burnout, what I see online and I see through the DMs to me is that there’s a lot of mothers that are now starting to identify as not just with ADHD, but also being autistic. ADHD meds tend to have a way of unveiling some other things that are underneath.

I was just wondering, a lot of moms say to me things like, I had my gallbladder out last year and it was the best holiday I ever had. Having my varicose veins out was just so amazing. And they will talk about going to hospital for a small operation and go there for a week to recover because they’re so exhausted.

I was wondering, how does autistic burnout look like in a mom who just has no choice but to continue?

Professor Tony Atwood:
Okay, my first comment is often the last person to know is the mom herself, who soldiers on, I’m fine. No, I’m okay. Because they know there’s no understudy. There is nobody who knows that child as well. Who’s going to do it? Grandma? But I have to do it. It is my role, but it’s doing it in a way that is leading to exhaustion, which is not fair on the kids.

And one of the consequences that we talked about autistic burnout in the presentation, but another factor is the siblings of the neurodiversity who say, I can’t tell mom of my problems because she’s got enough to worry about.

Jane McFadden:
That’s heartbreaking.

Professor Tony Atwood:
It is. And they’re being very kind on mom, but I’m having real problems, but she’s got enough. I don’t want to give her more problems.

Now, what happens is a mom will start to realize that I have no energy and the burnout is very much a similar presentation for depression. There’s no energy to do things. There’s a sense of negativity at all. And this is going to pervade every aspect of her life.

And one of the problems that I face as a clinical psychologist is that I see the child, and dare I say it, I come up with this fabulous program that’s going to be really good, but mom’s got no energy. And no matter how good the program may be, if she hasn’t got the energy, the assertiveness, the confidence, it’s not going to work.

So sometimes our priority may not be the child. It’s the mom. And that’s what NDIS needs to recognize because it’s all for services for the kids. Yes, absolutely. But what about mom? Mom’s the central person. Mom’s the one who’s going to be there for the rest of her life anyway.

And so it’s really, if you look after mom, you look after the child and the whole family and the family unit. So there needs to be a recognition that mom will sometimes need respite. And that’s something that needs to be recognized.

Now, it’s not that the child goes off to respite care to leave home. No. What it means and what I would like NDIS to do is someone comes in to do some of the household chores so that mom can have enjoyable time with the kids.

Jane McFadden:
Yeah, that would be brilliant. Or she needs time to go out and do the retail therapy and buy some new shoes. Yeah. Oh, I totally agree. I think it’s a little bit like on the airplanes, they say, put your own oxygen mask on first before you help others.

If you’re the one that’s putting everybody else first and then you’re slowly dying inside, you’re the nucleus of the family. That completely makes sense to me.

Professor Tony Atwood:
Yeah. And the burnout is a very profound effect for that individual who knows that they require energy, but they have nowhere to get the energy from. And that burnout leads to a negativity of only noticing what goes wrong with a child, not what’s good. And that negativity will affect the self-esteem of the child themselves.

Jane McFadden:
Okay. So you’re talking about like limping along with an injured foot, whatever, not seeking care means you can never actually run. You’re just limping along for a really long period. That’s what you mean?

Professor Tony Atwood:
Yes. You’ve got into survival mode. Yes.

Jane McFadden:
Okay.

Professor Tony Atwood:
You can’t take on board anything new, anything that will help. You just want to crawl into a ball and just go to sleep because I need to recover. So as much as we may look at what a child may need for their daily life and so on, absolutely. But it’s also what mums in particular, could be dads too, what do they need to cope?

But often when you were talking a moment ago about a diagnostic assessment, it’s all about the kid, but very rarely it’s to mum, how are you coping? How do you manage this? What do you need in your life to be able to cope? Because that child is part of a dynamic and you must understand and support the dynamic to support the child.

Jane McFadden:
Yeah. You know what? It’s the perfect storm, isn’t it? Because you get the diagnosis of your children and then looking at yourself, then there’s a real push on early intervention, which I totally understand and respect. But then you feel like the pressure’s heaped on to get the early intervention done.

The NDIS funding is possibly there, but if you don’t use it all, then you’ll have a take in next year. Then sometimes I remember a psych said to me, make sure you give yourself time to process. And I was like, I’m just laughable at this point.

But I so understand that then that would have an impact really on the child. And even though you think you’re being there for them, you’re probably physically there, but mentally not necessarily.

Professor Tony Atwood:
It is. What I do say to parents is when your ADHD or autistic son is fast asleep, look at them and smile and say you love them. That’s the time to go because you need to see them when they’re fast asleep and they look angelic.

Jane McFadden:
Yes, they do. They do.

Jane McFadden:
One more question I wanted to ask you before we finish up, Tony, was in regards to meltdown. There are a few women in the podcast, in the Facebook group that have been identifying with being autistic or being diagnosed, but then living in this whole imposter syndrome. I don’t really have it. There’s other words off. That’s all kind of part of the, I suppose, coming to peace with it.

I was wondering, some of the women have been asking me or saying that they’ve never had a meltdown like their child has. And I was wondering, what would a meltdown in a mum look like? Like a proper autistic meltdown.

Professor Tony Atwood:
Okay. When we look at meltdowns, we tend to think of an explosion of energy, destruction, smashing things, language, which — where did you learn those obscene words — things like that. It’s an explosion. But sometimes for a mum, it’s an implosion. It’s not anger. It’s depression. And it’s suicidal.

And so what mum may do is have a depression attack. There’s no point in living. I might as well die. And you get an internalising instead of raging against the world and going into attack mode, which is usually what happens in meltdown. Here, it’s going into attacking yourself. And there’s something wrong with me. And I’ll never get this and so on.

For a parent, it may be an implosion, not an explosion.

Jane McFadden:
Okay, I get what you’re saying. And that actually makes sense to a lot of people, what they’re saying online. What could you do to divert it?

Professor Tony Atwood:
Okay, some thoughts on here. There are the do’s and don’ts. What we usually do with the child is when you’re getting upset, what do you want your mum or dad to do or not do? Don’t interrogate me. Don’t talk about consequences. Don’t talk to me. I just need to be by myself. I’ll sort it out.

And it does require the parents to suppress their instinctive reactions, and to be calm and collected. And we’ll clean it up. And you’ll feel better soon. All those sorts of things.

What I then say, right, when it’s all over, you go to the toilet, and you lock the door. And then you open the door and then die. You need to get it out of your system, because if you suppress it too long, it’s going to affect mum’s mental health. So you need to release it.

Jane McFadden:
You know, that is so funny. I just convinced my husband yesterday to let me have a tiny house on our property. And when the builder came yesterday, he kept asking me about colours and stuff. And I was like, I don’t really care. I don’t really care. But can you tell me about soundproofing?

And anyway, so we were talking, and then in the end, he goes, just tell me what you really mean. Because all you’re talking about is soundproofing. And I was like, I don’t want to hear the word mum through the walls. And I don’t want anyone to hear me if I go in there and just start screaming.

And he looked at me like I was fully off my rocker. I just need somewhere to let it out. The neighbours don’t hear it.

Because otherwise, I have this facade of being able to cope and everything’s okay and stuff. But you’re human. And there are some times when you’re like a sponge, you’ve absorbed it, but you need to wring it out.

Professor Tony Atwood:
And sometimes, it’s almost like I want to go on a roller coaster and scream. I just want to smash it. What we do is that we call it constructive destruction.

You have something in there to smash. Sometimes, it can be anything. You just got to destroy it. It’s something that — even it’s something you’re chucking out. You can jump on it, you can smash it, you can put a hammer. In other words, you have all this energy, you’ve got to release it.

You either do it vocally, or you are destructive, but constructive in the sense that you discharge all the feeling. So you need to become a delinquent, destroying property as 14, 15-year-olds, smashing things. You need to go on a smashing rampage.

But it’s not valuable, doesn’t need to be replaced. But it’s now in thousands of tiny pieces, and you’re going to clean it all up and throw it in the bin.

Jane McFadden:
Well, that is amazing. That’s it amazing. I’ve got some new ideas for my tiny home. I’m going to have a think about that. That is amazing. Thank you so much. I love that.

Okay, one final question, Tony. If you had one message to give mums of neurodivergent children, particularly who have daughters, what would that be?

Professor Tony Atwood:
Unconditional love.

Jane McFadden:
Oh, that’s beautiful.

Professor Tony Atwood:
It is, because in the long term, despite my problems, mum always loved me. That’s the best thing that you could say about it. Despite all my challenges, I know I was difficult. Despite that, she loved me. That’s the best.

Jane McFadden:
That’s beautiful. I read a beautiful book, it was called Saving Noah. It was about a mother of a pedophile, or he’d done some things he shouldn’t have done. And the way that she loved him and what she did for him was just incredible, because she loved him regardless of his actions.

And I just thought it was one of the most incredible books to see her advocate for her son over and over again. And I thought that was brilliant. Okay. Thank you so much, Tony. That has been, oh my goodness, even better than I thought it was going to be. Thank you so much.

Professor Tony Atwood:
Thank you. Thank you for enabling me to be free to say some of the things in the particular structure that I think aren’t the usual sorts of things that are said, but they come from experience as a parent and professionally. And those are the things that I have discovered over time that I want to pass on.

Jane McFadden:
Oh, absolutely. Look, thank you so much for your time, Tony. If anyone would like to hear any more about Tony Atwood and Garnett events, I’m going to have everything in the episode notes.

If you jump on their websites, I absolutely recommend all of the courses. I haven’t finished yet. They are just very neuroaffirming. They make you feel good about yourself and good about your child, which is just so needed sometimes. Thank you so much.

Professor Tony Atwood:
Okay. Thanks very much, Jen. The key message here is you are not alone.

Jane McFadden:
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