Yeah, I remember when I was talking to Keri when I interviewed him about Takiwātanga and he was talking to a lot of different clinicians and a lot of different autistic people as well in the community. And he was asking for like, definition and came up like, they just have their own time and space. That’s it. And then he was receiving a lot of global feedback, even from clinicians.
I got into this field. I have two autistic cousins who are now 18 and 20. So we’ve known that they’re autistic for a while. So what eventually got me into this field was a real interest through knowing them and wanting to kind of help and support in this area. But then I guess every day there’s a lot of need from whanau and support needs from children.
So the idea of doing, hopefully, a little bit to help out in that space is really motivating for me. I started out my career as a primary school teacher and worked with a number of autistic kids and just felt like in that space, I wasn’t able to support
them in the way that I wanted to. I wanted to learn more and I wanted to do better. I’ve also got a really strong history of neurodiversity in my whanau as well. So I guess wanting to be in a space where I felt like I could offer some kind of support and address some of the need that’s there in some way.
How long have you been with the autism clinic? Or Victoria university? I’m a little bit confused. Is it an autism clinic under Victoria University? Yes. Okay, so the clinic is part of Victoria University and it’s within my role as a senior lecturer to be leading this clinic. It’s a research to practice clinic.
So that’s where the kind of university umbrella comes over. But we’ve only existed properly maybe for three or four years. I established this based on the work that I did from my PhD from there. And then both of you are under that Victoria University research. It’s a research actually right. In terms of the services you are providing to the autism community.
So I heard about the Denver model, but is that the only services you’re providing? No. Basically it’s a research to practice clinic, we offer a few different things. At the moment, our focus is tamariki under the age of five, and their whanau. So the main thing, as you said, that we do is based on that Early Start
Denver model, ESDM, not the most easy name to remember. We do do a few different things. So we have research projects on the go. For example, one research project that we’re just wrapping up is helping older siblings to play and engage with their younger autistic siblings using some of those ESDM strategies.
We do one on one therapy with ESDM, parent coaching, teacher support with ESDM. We’re also looking at a few different types of support as well for example, we will next month be Trialing, an autistic neurodiversity workshop. So we’ve co-designed that with autistic adults and the idea is that parents can come there and learn about autism through a neuro diversity view from autistic adult.
So that’s another type of service that we’re hoping to build in. Is it open across the whole Wellington. Yes. So at the moment we’re the only research to practice autism clinic in New Zealand and at the moment we can only really be supporting those wider Wellington Region. So up to Upper Hutt, up to Otaki and that’s kind of it for us for now. For now.
And then we’re looking at long term if there’s a growing need, some are we looking at expanding somewhere? Yeah, perhaps Christchurch. We’ve got our eyes on Christchurch a little bit. We’ve got one of our therapists moving there, for example, so that might be a logical next space.
But also I think now with the change in the way we’re kind of viewing technology partly through the pandemic and things, that online support is a lot more familiar to people and perhaps more appropriate. So another way of supporting whanau across the country might be to increase our, what we call Kalicampino remote type zoom or something like that.
Right now, given the changes you did mention about the pandemic and challenges about changing the routine. That’s one of the challenges that especially for me, having a five year old who just pull out from kindy and now you’re going to put him back, so you’re going to need to do another transition visits.
Again, how did you handle that? Disruption and changes to routine are not always the most welcome for our population or for anyone, really. We were all a bit thrown by that. So it was a hard time for us over the pandemic, needing to just shut everything face to face down and then we did have to take it slowly, slowly coming back again, just knowing that some of the kids that we support do take that time to become familiar again with the people in the space.
So it was indeed disruptive, but we just have to take because where they. Were at just being really sensitive and responsive to whanau and children. In terms of online, you did mention online training, so is it available publicly as well, or whoever you’re currently working with? So we have a waiting list and things and at the moment we are doing online parent support within our waiting list and so that is whanau.
Who still live in the Wellington region, but once a week they’ll sign into zoom and there’s about three or four whanau who will join and will talk about the topics of some problems together. It’s also a chance for whanau to meet other people who have autistic children, share ideas and stuff like that. So that’s something that we do at the moment that’s still mostly restricted to Wellington, but I can really see how that could easily be expanded.
Currently, how many families are you supporting? So we usually see about 50 new whanau a year. That seems stable around that number for maybe the last three years. So that’s 15 or so new whanau per term. And that’s across everything that we’re doing, our research, our community support and so forth. How do we collect the data in terms of the research and how do we know that what we are doing in terms of the program is that effective to the family?
So that’s a really good question. If there is going to be participating in research, we would do it quite rigorously. So at the moment we’re doing a randomized control trial comparing how helpful, 2 hours a week of use from a therapist and 1 hour a week of support from a therapist compared to the support that tamariki would typically be getting within their community. So for that one, we do a lot of rigorous assessments beforehand and then rigorous assessments afterwards.
And what we’re doing is we’re comparing a group who received that support with a group who didn’t receive that support, bearing in mind the group who didn’t receive that support will be putting support in place immediately after.
For ethical reason. So there we do a really kind of complicated statistics to kind of compare that. Is it a statistically significant improvement in say, language or in the parents ability to understand and support their child or so forth. But then more generally we would settle on so if this is outside of research, we’d settle on some kind of important goals for the parent and for the child.
So for example, having words or a point or something to communicate the child’s wants or need. And then we’d be tracking progress towards that goal. So we’d be hoping within, say, a term of therapy, a child who maybe wasn’t pointing to communicate might be pointing more consistently towards the end of the term. And if we’re not seeing that, we would be putting other strategies in place to support their learning, mix it up in a way that helps them, I guess. But yeah, Jess also does.
One of the key things that we’re concerned about as well is this idea of generalization. So making sure that we’re not just seeing those improvements in the clinic, that they’re happening at home, at Kindy, wherever the child is, and with different adults as well, rather than just with the therapist. In terms of the equity, how are we supporting kids by equity?
We are very mindful of making sure that we are connecting with a range of different communities and making sure that we are available and visible across a lot of different communities, trying to make sure that we are a place where a really diverse range of whanau can feel comfortable and supported. And that is something that we are continually reflecting on and trying to improve on.
We’re also doing some work at the moment to make sure that what we’re teaching and the way we’re teaching it is really neuro diversity affirming and within that affirming to different groups as well. I think it’s a really great question because it is such an important thing to be aware of and to be constantly reflecting on and trying to get right. In terms of information, I’m always referring back to my experience because what we had before, when we suspect that at first my child has autism, it’s like where are we going to start, do we need to go to a clinic? Do we need
To go to Autism NZ. There’s no standard process across NZ. So the pathway for families who think their child is showing signs of autism and maybe autistic are very complicated, very difficult for Whanau to navigate. It’s a real problem actually, isn’t it? And we’re talking about, I guess two different things here, right? Like you want to get your child a diagnostic assessment to see if they truly are autistic or meet that criteria.
And you also perhaps even regardless of that diagnosis, want to make sure that there’s the appropriate support in place, right? In terms of the pathway for the diagnosis, regardless of where you are in New Zealand, a clear place to start is to go and see your GP and make your concerns really clear. Another thing that I would recommend for whanau whose children are three years or younger, is there’s an app called ASDetect.
So that’s kind of a gold standard way of determining whether your child is showing signs of autism and maybe more likely than average to receive that autism diagnosis. So I would recommend for Whanau that they go to the ASDetect website. And what this does is you put in your child’s age, it guides you through some things that you might be looking for that corresponds to those signs of autism. One that we’re really familiar is that eye contact might look a bit different for an autistic child.
So you’ll see a video of what eye contact looks like for a child who is not autistic and then for an autistic child. And as a parent you can make that determination, what does my child look like more within these videos and at the end it will kind of come up saying hey, it looks like your child is more likely than average maybe to eventually receive this diagnosis. That’s also something you can bring to the GP as kind of support, guide your thoughts around that. So that diagnosis each DHB entities is kind of like a different process from there.
But I can confidently say a GP, Plunket nurse, some of those health professionals that you interact with naturally early in life will be your first point of call regardless. And then the process is going to be different from there. Unfortunately, we don’t do diagnostic clinic, we do the early support side of things. And because the diagnostics process is complicated, because there’s lost in a lot of weights and things.
We don’t require the child to be diagnosed as autistic to access our services. So we will support any child under the age of five who’s showing signs of autism and we’ll be doing a similar thing to check that as I talked about with those fees to check videos. So we’ll do our own kind of version of that to check that there are some signs there.
The way that we look at it is like we’re not diagnosticians. We don’t know if your child is eventually going to go on to receive an autism diagnosis or not. But what we can see is that there are some signs here and our support might be helpful. So that’s kind of where we leave it. Whanau can and do approach us directly, but we also get referrals from the DHBs, from the Ministry of Education, from early intervention type supports within the Wellington region. So we’re pretty much open.
Come to us, we’ll take it from there. Right? And then you will just direct them to the right path, right? Yeah. So for the diagnosis and things like that, we also take on ourselves to be somewhat aware of the other services and supports available within the area, particularly within research and things like that will support Whanau to be linked up with the other support that they need to understand the system that’s quite difficult to navigate.
Tell me about the Denver model. How does it work? I mean, like, if I’m a new parent and I would like to understand if it’s going to be effective for my son or my child, how does it work? Okay, well, if Jess can add anything, flush it out. So the Early Start Denver Model comes down to the United States and we’re definitely within the kind of boundaries that we’re allowed.
We’ve adapted it to make sure it fits best within this New Zealand context and also with the increasing wants to be really respectful of the rights of the type of support and neurodiversity affirming and so forth. So basically what this model is, is it’s a playing or routine based model of support. So regardless of whether we’re the therapist or supporting a parent or a teacher, the idea is that we start with the basics of what does this child like to do, what do they enjoy, what are their strengths and how can we build on it from there.
For example, imagine your child’s favorite thing to do is to jump with you on the trampoline. That’s amazing. Right? So we kind of look at how to build a nice, fun, to and from routine of jumping up and down on the trampoline, doing some things that the child loves to do on the trampoline, maybe out suggesting some new things that the child might like to do that they haven’t done yet and so forth. So that’s kind of the structure we’re doing it jumping on the trampoline, we’re singing some songs we’re doing some tickles, we’re playing with blocks, all that kind of stuff that you usually see young children doing, building the learning in there.
But also for parents. How can we build the learning into meal times, into bath times, into all of our daily routines and out in the community? So that’s the basis for the learning. We’re just learning through the stuff we do every day, naturally as a child anyway. And then on top of that, we work with the parent to select some goals that are going to help the child to kind of achieve what they want to achieve and so forth.
So the key things that we focus on is ensuring that the child has an effective way of communicating that can be understood by others. It doesn’t necessarily have to be words, it can be gestures or pointing or those kind of things, but we really love for the children that we support to be able to kind of advocate for themselves in the world and to be understood to help the parent or therapists find ways of joining the child where they’re at and building some routines as well.
So that would be some key examples of the goals that we would teach. So we have some different ways, I guess, different modes of different settings that we use. The ESDM, we have kind of one on one with a therapist in a clinic room and that’s typically for an hour long session. Most kids would come once or twice a week. We also offer parent coaching, so we go into the home or sometimes, as Hannah mentioned, remotely, worked through some different strategies with the parent that they can use in their everyday life. We’ve also done some work in ECE settings, so working with teachers and showing them some different strategies they can use to include the child and support them in that ECE setting.
And then do you work with other agencies or departments from the organization, like you mentioned about ECE. like the Ministry of Education to align what you’re doing with what they are expecting in the school settings. So we don’t receive funding from any ministry or any government funding. So it’s not like we work for those ministries or anything. But it’s very important to us to collaborate and align the goals with anyone else who’s supporting the child.
So if the child is being supported by the Ministry of Education, we’d love to be on the same page, doing the same thing. We ask parents if they consent to us kind of approaching the other people who are there as professionals to support the child so that we can be working as best we can together. In Wellington, we have the Wellington Early Intervention Trust, which is another early support center.
We work very closely with them in terms of trying to kind of align our goals. If we’re both seeing the same child, as long as parents consent, of course, then we make sure we’re kind of all on the same page together. In terms of reaching out to you, do we need to go to your website to apply? I mean, is that the return to apply or to be considered as let’s say I want my child to be part of that? Yeah.
So if you put in Victoria University of Wellington Autism Clinic into Google, I would hope autism clinic too, but you could never rely on it. Then our website will come up and there’s contact details on there. But yeah, basically we don’t have like a formal form or anything to fill out. You just email, get in touch and we take it from there.
The thing that we do need to check is that your child is truly showing signs of autism. Because we’re an autism clinic, we’re not trained to support other types of need if the child is not showing those signs. And also we do unfortunately have somewhat of a waiting list. We try and keep it down so we might not be able to offer that instant support like we would like.
So how long is the weekend? I think at the moment it’s about six months, which is frustrating for Whanau and we would like it to be shorter, but that is what it is at the moment. More funding, please. We will knock… C’mmon We need your help We’re collaborating with other government agencies, like Ministry of Education in terms of the Ministry of Health. I know they are going to split between health New Zealand and Māori Health.
Are we impacted by that change? No, because we don’t receive any funding from them. Is it a good thing or a bad thing? The more funding the better. It’s important that we understand those changes so that we can work a bit more effectively alongside these organizations that we’re not. Directly yeah, especially for parents like asking what path they are going to have. Yeah.
It’s really important for us to understand those pathways so that we can support our whanau by trying to navigate the whole system. And it’s already so fragmented and difficult to navigate. It really is. And sort of that funny. Almost like a middle ground between Ministry of Health and Ministry of Education with kind of fortunate each camp and then.
The new Disability Ministry as well and understanding how that piece fits in with all the other pieces. Aside from the Denver model. I keep on saying service, but what type are you going to use for that Denver model? Kind of just the support. I guess. Do we do other support as well apart from that Denver model? Yeah. So what we’re looking to move into is more of those neurodiversity workshops where Whanau can meet autistic adults and hear their perspective.
Another thing that we’re really excited about towards the end of the year is there is a model called PACT. Pediatric Autism Communication Therapy. Yes. And that comes out of the UK. It seems like a really promising, sensitive, neurodiversity-affirming type of approach. So we’re being trained in that towards. The end of the year with the.
Hope of adding that giving whanau a bit more of a choice between models or supports can only be a good thing. Yeah. And then Jess also does important research besides that. Looking at working with whanau and ECE teachers to co-design some ECE-specific supports and particularly for Tamariki Māori on the autism spectrum. But of benefit to everybody because there is so much awesome knowledge and wisdom within Matauranga Māori that can benefit anybody. Māori or non-Māori.
An exciting place to be working in where you’re working with families, with teachers and really designing something to fit rather than trying to fit something that’s come from somewhere else. In terms of the support that we provided, are there any additional improvements that we’re looking at apart from the PACT that we are going to introduce or are we combining that PACT later on with ESDM? How do you think that would work? I think we look at always improving. So we’ve got these directions we want to go in in terms of finding out about new supports and things like that.
But I think what’s an ongoing process is listening to our community, listening to our whanau and autistic adults, autistic people and just constantly trying to make what we have better, more responsive to whanau as respectful as we can to the child themselves and all that kind of thing. So I think that will just keep going forever and I think we’ll ever kind of be done in that space. I can’t imagine. I know there are a lot of programs, therapy and other like ESDM and then we’re introducing PACT as well.
I understand that it’s not a one size fits all and we need to test every possibilities so that at least we can help or support kids. Based on your studies what’s the most? I’m not going to say like this is the most, I am not going to say this is the most effective, but what’s the most promising. I should say in therapy so I think what you say about every child is different and there’s no one size fits all means that although we might see across a lot of children in this study or that study, there may be these benefits for both ESDM and PACT.
There’s some research evidence to suggest that they’re beneficial for certain things for certain children. I think you’re right that the most important thing is tailoring it, really getting to know the child and their whanau and what might work best for them and their needs. So there is definitely we know for sure from the research that there’s no one program that can meet the needs of all children or whanau and I don’t think there ever will be.
So if one program doesn’t work, what do you do with that? I mean, like for example, for example, it’s me doing a test subject. So if it doesn’t work, are you going to recommend something else or are you going to say maybe it’s not for you? Yes, and it’s our ethical responsibility basically as practitioners to do that. So with ESDM, for example, we kind of try a first thing and because we’re seeing how the child’s going with the goals all the time, making sure that those goals are a priority for the final, if we’re not seeing kind of any progress, there’s a lot of changes within the model that we can make.
So maybe we need to be teaching this with more interesting materials or maybe we need to have a few more chances for the child to learn this or we need to teach it in a different way, or do we need to bring in visuals or just the child needs some form of augmentative or alternative communication. So could we be writing things down? Could we be using a device to communicate? So within the model there’s a lot of flexibility to be trying a lot of different things because we know that each child has different needs. But there’s definitely some occasions when we’ve.
Made a lot of those changes and. We’re still not seeing the learning that we would be hoping for. So in those circumstances, it’s our responsibility to be really honest with the funeral and say, look, here’s the things we’ve tried. To be honest, we’re not seeing that much progress here. What do you think are the other things that you think that we can and should try? And we’re really open to that. But also maybe this isn’t the model for you. Let’s have a think about what’s out there.
We can help and support you with a referral. If, you know, do you need more direct input from a speech language therapist? Is that going to be more helpful? So it’s something as a whole clinic we know is our responsibility, basically. Part of it is finding a model that fits with the values and the preferences of the family and that varies quite a lot as well, which is where I think it will be really great to have some different programs that we can offer. Like they’ve got some choice and they. Can pick and choose.
We record those data, like, for example, as it doesn’t fit in this family, do we consider maybe because the family just migrated, for example, and then, of course, the environment is new. Yeah. So we always take every family kind of where they’re at and really want to take those things into consideration, but always wanting to do better as well. Right. So one thing that I would love to do if we have more funding is the idea of kind of making sure that the support offered in the person’s first thing, which, you know, so that we could have therapy offered in Te Reo Māori and all of that kind of thing.
And we’re working towards it that we’re not there yet. So if we have a whanau who just migrated where English is not their first language, we do the best we can. I would love for us to be able to have a way of communicating with them in their own language. Access to those translation services and stuff like that is definitely something I would love the funding for. And that’s where some of our qualitative research is really useful as well.
So interviewing parents and families after they’ve been through one of our services to find out what worked and what didn’t work and how we can improve. How about in terms of, like, I understand that if it doesn’t work, we will stop doing it and we will introduce another concept. But there is this I just heard it somewhere when I was listening in another podcast, and then they said that if it doesn’t work now, potentially it could possibly work in the future. Do we do that as well?
Yes, and I think that’s something that we need to kind of have in mind more, and something that I’m hearing really clearly from autistic adults is that now might just not be the right time for that. But that doesn’t necessarily mean that it won’t be, never will be the right time. It’s just not right now. And I think that’s something that we need to be more conscious of, actually. Yeah. Although I guess one of the challenges for us with that is that because we just cater for under five, often when we’re seeing children for the first time, they’re three or four already. That doesn’t give us a lot of. Time to wait and see. We don’t really go with wait and see.
We kind of go with check everything that’s appropriate and see where we can go from there before I finally ask some of the questions. WATCH OUT FALLING CAMERA AHEAD!!! Any additional information that you would like to add or you would like to share as well? Because after I edit this, I’ll be posting at least, and I will be asking for help as well from the government
I’ve been knocking on their door like… My son needs he’s a runner, and then it’s declined. Okay, so what’s the plan? Any other additional information or message you would like or any message you would like to give to parents and carers. I guess one thing to say more clearly is how grateful we are to the support and input that we get from our whanau and from our advisory group.
So we do have a group of professionals and parents and autistic adults who a couple of times a year provide really good critical but practical input in how we could be better supporting our child and our children and better operating the clinic. And I think that’s just been invaluable. For us. I guess, just acknowledging that what a tricky system is for parents to be navigating and there are so many challenges associated with finding support. So you’re really grateful.
To be given the privilege, really to be involved in family’s lives and being a part of their journey with autism. What advice would you give to an autistic person that’s about to enter the real world? What do you mean by the real world? I mean, of course a lot of the autistic kids are like when they are going to work, for example, and then fears why they are going in that path. So I think I would probably switch that up a bit and it would be my advice to the world to better welcome and accept and allow autistic people to thrive, basically.
So I think if I think about someone who is autistic finishing up at school and thinking of going on to university or into the workplace, I would be encouraging workplaces and universities and things to think about how much that person actually does have to offer.
And maybe we need to change what we’re doing to best support and label that person to kind of thrive in these spaces. But I think it’s more about us as a society working out what we need to do to get to best support people who do have so much to offer. And as far as I’m aware, schools, clinics and society itself is not built for autistic or neurodiverse people. And that’s the challenge we’ve been trying to like they say, early intervention works very well.
We know that science can back that up. But again, given the long waiting list, given the challenges parents are experiencing, I mean, the child is already like five years old, six years old, 7, 10 years old, until they get the support that they really want (NEED). Frustrating, if I’m going, to be honest about it.
Yeah. So. How about you, Jess? Yeah, I just kind of added to that. Find your tribes, find your people, and find support from other like-minded, understanding people. And there are some amazing initiatives and online groups now of autistic people supporting other autistic people and sharing experiences and knowledge and wisdom. So, yeah, I would go to them for advice, I think because there’s an amazing wealth of wisdom there. Okay, that’s it. Thank you for your time because I don’t have anything to offer you.
I know you are very busy and you still have time to come here, and this is something. Cool. Thank you. I won’t start to have the opportunity to talk about this. Yeah.
And we were just saying what a fantastic idea this is and how valuable it’s really cool. Thank you. No worries. I call it like the multi spectrum, because it’s a sound spectrum, color spectrum and height spectrum. Yeah. Thanks very much. Thanks for your time, and I will be
meeting you again at some point.
Autism Clinic | Victoria University, Wellington, New Zealand