Episode 8- Under the Mask

Speaker 1:          Welcome to Loop Me In, the podcast community for parents and carers on raising children with disabilities. Join presenters, Dr. Lisa Interligi and Kristine Christopoulos and their guests in sharing experiences, information, and support ideas to help children with disabilities flourish.

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Speaker 2:          Welcome to Loop Me In. Today, we have Danuta, who is a clinical psychologist specializing in girls and women on the spectrum. She has created a unique practice called Unique U, which is one of the only ones in Australia, I believe. She has also written a book called I Am an Aspie Girl. Welcome, Danuta.

Danuta:              Thank you so much for having me, Kristine and Lisa.

Speaker 2:          Pleasure. Now, I’m curious. Tell me why you decided to do a center just based on women and girls.

Danuta:              All of my experience up until about, what was it? Ooh, 11 years ago was centered around autistic boys and men, and it always fascinated me. Then when I had the opportunity to work with Professor Tony Atwood and Dr. Michelle Garnet in Brisbane, we really started discovering… I became exposed to the more subtle presentations, autistic presentations, and there they lay in the female presentation of autism.

Speaker 4:          Yeah. I think I was reading that in Australia, there’s only one woman diagnosed to about every four males, men or boys. Why do you think that is?

Danuta:              Yeah. That number’s actually rising. Well, I think it was an underestimate. It’s probably more like one for every two, if not more equally coming up to one on one, just looking at a different presentation. So the girls are very good at being able to mask their difficulties. I say they’re very good at it because for us, for the outsiders looking in, it’s very adaptive to be able to blend in and to pick up on cues and facial expressions and watch before reacting and then act accordingly. This is one of the reasons they’re very good chameleons. They’re good at watching before they act and being very cautious in how they respond. If they have ADHD with the impulsivity, that is a lot harder for the girls, of course.

Speaker 4:          Yeah. I think that the other thing that was really interesting to me, and it might be an outdated stat, too, is that there’s been a significant increase in the number of people diagnosed with autism over… I think the stat that I had was from 2012 to ’15, there was a 42% increase. Is that because we’re better at diagnosing now, do you think?

Danuta:              Yeah, absolutely. We’re better at diagnosing. We’re more aware in general that that could be the reason for the person’s presentations and particular patterns of challenges and strengths.

Speaker 2:          Are you finding now that also women are coming in or adults coming in and then when you’re looking back at their journey, you can see that they also have been on the spectrum?

Danuta:              Yeah. That’s so true. We have different typical presentations. One of them is the women coming in have always wondered why they’re different, and they’ve done some reading or been exposed to information on social media where they might be autistic, and so they’ve explored that further and then approached us for a diagnostic assessment to delve into that further.

Then we have the women who bring their daughters into our clinic. So the daughters have been picked up and through that diagnostic assessment process for their daughter, they’ve, I guess, discovered and reflected on their own lives as children and the similarities that they experienced to their daughters, which they thought was just their daughter was just doing what they used to do. So it wasn’t particularly unusual. Then they started realizing, “Oh, hang on a second. This is what I was like, too.”

Speaker 4:          What’s the benefit of having a diagnosis, do you think, as an adult?

Danuta:              Oh, there’s so much. I think the biggest thing is identity and self-awareness, which is so important for our everyday functioning. To know who we are, to be able to understand our reactions, to be able to explain ourselves to other people so that they get the correct example or explanation for certain behaviors, and also to access services. To be able to apply for the NDIS, for example, or to finally understand why they’ve approached burnout and exhaustion and they can’t keep pushing themselves to the same level as they’ve been pressured to do so through society. They’ve finally put their hand up and said, “No, this is actually why I can’t. And I need to have a rest. And I need to have my disability recognized.”

Speaker 4:          A really good point, isn’t it, that when you’re masking and you’re working really hard, you’re working overtime really to keep up with what you think people expect of you. So that burnout thing must be a really big issue.

Danuta:              It is a big issue. It’s actually one thing, that understanding of listening to lived experience and autistic experience and really understanding masking for what it is has been really crucial, actually, for us as a clinic in developing professionally because it’s, as I said before, it seems adaptive on the surface. However, it is actually extremely exhausting and debilitating. For many women, they develop secondary mental health issues due to the exhaustion of the masking and the constant reinforcement that who they actually are is not okay, and they have to be this other version of themselves, and it’s very difficult to sustain. We want to prevent that in the clinic.

So when we speak to our little girls, we talk about masking and we talk about the benefits of it; we talk about the dangers of it and the risks of it. We are very careful in making it clear that when they come to us, we’re not going to teach them to socialize like a neurotypical because that’s losing their own identity, which is very harmful. It’s a very exciting time to be in the industry of psychology within autism because there’s all these great new understandings.

Speaker 2:          When someone comes in at an older age, what therapy would you have for them?

Danuta:              Quite often when they come in at an older age, they’re coming in because they have usually some concern or challenge or difficulties with coping. It’s not the autism itself that we’re wanting to treat. We would never want to treat autism. We really appreciate it. It’s just a different type of thinking. And it does come with its disability. So we want to help and support our clients with those autistic related disabilities. But in terms of the mental health, we very much work as other psychologists, generalist psychologists in helping our clients with many mental health and coping issues. But we bring to that the autistic awareness of the female presentation to help modify any approaches so that they can actually help our clients.

Speaker 2:          When you see someone at an older age, and then you obviously have young, how old would be your youngest?

Danuta:              We do occasionally get a preschooler in, but usually they’re school age. So from 5 up until people in their 60s. I did a diagnostic assessment for an 85-year-old in a nursing home-

Speaker 2:          Really? Gee.

Danuta:              … during COVID online. So it’s never too late to learn about yourself. If you’re open and insightful about yourself, age is not a barrier.

Speaker 2:          So the 80-year-old, how did that come about? Did she understand when you obviously gave her the diagnosis? Did she know that there was something very different about her?

Danuta:              Yeah. She knew she was different all her life, and she was in the nursing home due to mobility disabilities rather than any dementia or cognitive type deterioration. So she was a perfect sound mind, super intelligent, really amazing woman. She initiated the assessment and wanted to understand herself better.

Speaker 2:          Wow. That’s amazing. Even at that age. Wow. Tell us the importance of getting this early. There might be families out there who are thinking, “Is my daughter different?” What’s the importance of that early detection?

Danuta:              Yeah. It’s very much about identity and to prevent any negative, untrue labels forming around their child, to celebrate being autistic, to understand that it’s just a different type of variance in the human brain, and there’s lots of autistic girls around and they have different ways of interacting and communicating and stronger needs for self-regulation and sensory stimulation. The earlier you can equip somebody, any person, with tools to manage things that they struggle with, the better. The better the outcome in terms of their self-esteem. They’re better able to advocate for themselves and explain to the teacher, for example, “I need to fiddle with this fidget toy because it helps me to listen, and otherwise I cannot concentrate, or I feel really uncomfortable in my body.” So giving skills like that to children so they can advocate for themselves.

Speaker 4:          That’s really important, too, isn’t it? Because that self-stimulation thing is a really good support, I guess, in understanding that as opposed to being something that parents might find a little bit irritating or a little bit worrisome. It’s actually a tool to help the person actually cope and focus.

Danuta:              That’s right. It’s very important to educate the child’s family, the parents about why they’re behaving in this way, what they’re seeking that input for, and for the parents to be able to recognize when the child might need to be given something, a movement break even, or a fidget toy, or time away from socializing to be with their pets or just something. To label it as, “Oh, I think it looks like you might need a bit of a break. Would you like to cuddle the cat or would you like to go and read a book for a bit or have you had too much social at the moment?” Just normalizing those needs, that’s part of their makeup, and when the parents can jump in and prompt with those suggestions, that child’s going to develop a better sense of what they need in a situation. Also, they’ll be more open to going into less familiar environments like school because they’ll know that their needs will be met.

Speaker 4:          Yeah. I think that that’s also important to have that broader engagement of school environments and stuff as well. Is that what you’re finding in terms of particularly women or girls who are masking, to chat to the schools, make sure that the teachers understand and really try and raise their level of awareness as well?

Danuta:              Yes. I know. That’s so true. It’s very important to be able to advocate for these little girls and older girls, because quite often the school will think, “Oh, there’s no problem. They’re fine. There’s no issue.” And that is quite dangerous. When I hear that, I think, “Oh, dear, they’re really masking if they’re not even showing anything.” What expense is that going to have on that child? It’s very important to educate the school about masking and saying that, well, there’s quite different behaviors that are coming up at home when the kids are feeling safe and able to be themselves. So we want to try and bridge that gap and give them opportunities to de-stress in the day at school, and some ideas there might be around interest-based lunchtime clubs, being able to choose topics of interest to present on rather than always the syllabus, being sat next to like-minded peers, having their sensory needs met, et cetera.

Speaker 2:          I noticed you also have groups where girls get together at different ages. I can imagine that that would be really important as well, especially as they get older and they start liking boys or topics of sex or even puberty. Like, obviously girls go through a menstrual cycle. I can imagine those groups would be really good for the girls, but also good for the families to understand where they’re going.

Danuta:              Yes. We do have a number of groups running, and I think the parents equally benefit from those. We actually do set up a pot of tea in the waiting room for the parents and some cue cards to help them maybe get started on interesting topics, just to help them get to know each other and share some similar life experiences. Some of the comments from the girls have been that they’ve never met another autistic girl, and they didn’t even know she was autistic. She didn’t look autistic. So it’s all about breaking down those stereotypes of, well, what does it look like? It’s trying to help them to understand that it’s often a hidden disability, and it can also come with some amazing strengths. But it does come with some really significant challenges for many, and that’s hidden through masking and just helping through better education about their diagnosis and meeting other girls can be just such an important benefit of groups.

Quite often, we find that when autistic girls and women get together, all of the social challenges break away. So it’s not really that they’re lacking; they don’t know how to socialize. They absolutely do know how to socialize, but they socialize in a particular way, which is more accepted and found interesting by other autistic women and girls.

Speaker 4:          How do people know that you’re around? Are you getting referrals from GPs? Or do they just kind of Google search something because they’re concerned about it?

Danuta:              Yeah. Yeah. We’ve got some pediatricians that we’ve got good relationships with since they know of us. But I think we are easily found on the internet and through word of mouth. I think Google’s a wonderful tool.

Speaker 4:          Yeah. Because it is something that we’ve been talking about this season, haven’t we? Is that the role of the GP and we’ve had a couple of discussions around the fact that there should be more education of GPs as well, just in disability generally, but also on this issue because it is something that people aren’t necessarily aware about. So it would be great to have that level of awareness in GPs so that they can pick it up and refer if they’re concerned.

Danuta:              Yes. Well, actually the draft guidelines have been recently released this week through the Autism CRC, and that is available for public comment. There’s actually a lot of exciting advances in those that I would hope that other disciplines would become familiar with. It talks about masking and being neurodiversity-affirming in their approach. So I would hope that GPs would have a look at that, and they could learn a lot.

Speaker 2:          And you also have a dog on site, Panda. How helpful do you think animals are for children with a disability, girls as well as boys?

Danuta:              Yeah. Oh, I think they’re integral. I think for so many, having to rely on the social way of introducing yourself and relating to people can be very distressing and uncomfortable for new clients, especially. So if they’re coming in and there’s a therapy dog there, they don’t need to talk. They can just pat and interact in a more tactile and kinesthetic way, which really takes away some of those barriers. We had a little girl come up to reception this week and she introduced herself and said, “I’m here to see Panda.” So not the psychologist who has Panda, but Panda.

Speaker 4:          What sort of dog is Panda?

Danuta:              Goodness. So Panda is Shivon’s therapy dog. I think he’s got some Shih-Tzu in him, and… Oh, I don’t even know. I should know this. He’s got a few combinations. He’s absolutely gorgeous. His eyes are just so loving and adoring. He sits at people’s feet and just looks up with these beautiful eyes. I think everyone gets won over by Panda.

Speaker 2:          Sure they do. And your book, which we touched on earlier, tell us your inspiration to writing that.

Danuta:              Ah, so for that one, I was working clinically and conducting diagnostic assessments. Then in the feedback session, I was explaining about a different way of thinking and explaining about, it was Asperger’s at that time. There was no resources that I could explain and share with the girls about their particular presentation. So, I was using a lot of the boy ones and modifying them and say, “But for you, it’s a little bit different. You’re able to copy what the other girls are doing, and it looks like it’s really easy on the outside.” So I was sort of just having to improvise with the other books that were there. I just thought I would just love to write a book so I could use it clinically. And that’s how it was born.

Speaker 2:          Yeah. That’s awesome.

Speaker 4:          What’s it called?

Danuta:              I’m an Aspie Girl.

Speaker 2:          And I think there’s nothing better than seeing something with pictures and writing and identifying with that is great. So we’ll put [inaudible 00:20:05] book up there because… Yeah. Well, how to look at it briefly and very easy for young girls to read and understand.

Danuta:              Yeah. So it’s from age five and up, but I’ve had teenage girls. You could look at it with teenage girls because it goes into things like sensory sensitivities. That part might go over the heads of the younger girls a little bit, but then you can go into what that actually means with the older girls, and there’s a section in the back for parents to help them initiate those different discussions on various pages to explore what’s going on for their daughter with those particular components of autism.

Speaker 4:          Wow. And we don’t have that, do we? We have our boys and we appreciate how gorgeous they are and with all their differences. We can only imagine that if you have a girl, you would feel the same, but your experience might be different. So it was really good to understand that today. I hadn’t really thought about it, to be fair.

Danuta:              Oh, great. I’m so glad.

Speaker 2:          Yeah. Really, really grateful that you were able to come on because I know how busy you are. I think there’ll be a lot of mums out there really keen, even for the groups just to interact with other girls or other families. It’s the power of community, isn’t it?

Danuta:              Yeah, absolutely. It is. I think it’s important. I’d highly recommend Yellow Ladybugs, which is a parent-run, autistic-run organization for the younger girls up until 15, running events for autistic girls. That can be another great way for the parents to meet as well.

Speaker 2:          Great. Thank you for that.

Speaker 4:          Thank you [inaudible 00:21:58]

Speaker 2:          Thank you so much for coming on today. Keep warm.

Danuta:              Thank you. You, too. I hope you get out into that beautiful sunshine.

Speaker 2:          Yeah. Thanks.

Speaker 4:          Yeah, we need it. Thank you.

Speaker 1:          Thanks for being part of the Loop Me In community today and joining our conversation on raising children with disabilities. Join us for the next episode on some of your favorite platforms like Spotify and Apple Podcasts. If you would like to support us, please recommend the Loop Me In podcast to your network of parents, carers and providers. If you would like us to cover a topic or invite a guest to chat, please email us at contact@loop-me-in.com.au, or go to our website at loop-me-in.com.au. If you’ve got any feedback, please let us know so we can improve and cover issues you want.

Of course, if anything in the podcast today has raised concerns for you, you can contact Beyond Blue on 1300224636, or lifeline on 131114.