Speak Up- KōrerotiaDiscussing Autism

29 March 2017

Male This programme was first broadcast on Canterbury’s community access radio station Plains FM 96.9 and was made with the assistance of New Zealand on Air.

Female Coming up next conversations on human rights with “Speak Up” – “Kōrerotia”, here on Plains FM.

Sally E ngā mana,E ngā reo,E ngā hau e whāTēnā koutou katoaNau mai ki tēnei hōtaka: “Speak Up” – “Kōrerotia”.

Tune in as our guests “Speak Up”, sharing their unique and powerful experiences and opinions and may you also be inspired to “Speak Up” when the moment is right.

Welcome to “Speak Up” – “Kōrerotia”. I’m your host Sally Carlton and today we’ve got Mallory Quail back co-hosting. Mal, you hosted the Addiction show with me a few months ago now so it’s really nice to have you back.

Mallory Thanks Sally.

Sally And today we’re going to be discussing autism; we’ve got three expert guests with us in the studio: Robyn Young from Autism New Zealand, Bridget Carter and Dean Sutherland. And it would be great if we just kick off by a round of introductions, who are you and why have you come along to take part in this show.

Bridget Hi my name is Bridget Carter and I am a parent with two children on the autism spectrum. I have known Robyn Young for quite some time, being involved with many things with Autism New Zealand, and she’s asked me to come along and come and talk to the people today about ASD. So I feel honoured and excited about it.

Sally My first question: ASD, if you could explain that please for the people who might not know.

Bridget Well as a parent, from my perspective, I find it quite a tricky thing to explain because you meet one person with autism and people have the perception that the next person they meet are going to be the same but if you meet one person with autism you’ve actually met one person with autism. So for me as a parent, I explain it with obviously there’s three characteristics of ASD. There’s some fantastic resources out there: two in particular that are great is the Autism Spectrum Booklet ASD

Resource for Teachers, it’s a really great way of explaining what ASD is and also there are some fantastic cards that you can download off the Ministry of Health website and they’re sort of like ASD quick cards and they give you a brief description on what ASD is.

So there’s three… The DCM-5 changes have changed but there’s basically ASD characteristics with communication and that may have challenges with both verbal and non-verbal communication as well as social interaction is another part of ASD characteristic and that is for younger children may not know how to join in with others or older children finding it difficult to have a conversation or start a conversation. And then there’s that thinking and thinking or behaviour and that’s quite a broad spectrum in that in itself but sensory is also included in that. But all these characteristics, every child will present them in different ways so having two children I see that every day.

Sally Thank you. And Robyn?

Robyn ASD, Autism Spectrum Disorder. At Autism New Zealand we try not to use that word ‘disorder’ too much because it immediately denotes negativism and there’s so many positives about autism but ASD does stand for autism spectrum disorder but we just tend to talk about ‘the spectrum’ and also at Autism New Zealand if I can just say we’re the first people to say parents are the experts. So Bridget is an expert, she is a parent of two boys and parents are the experts on their own children so that’s something that we always are very keen to promote.

Sally You mentioned parents are the experts on their own children and you’ve also mentioned, Bridget, that each child is different. This is potentially a difficult question to answer, but do parents of children with autism also relate better to children with autism that aren’t their own? If that makes sense.

Dean Hi I’m Dean Sutherland from the University of Canterbury; again, it’s a privilege to be with such experienced experts in the room. From my experience, parents with children who have autism are uniquely positioned to relate to other children with autism but as Bridget mentioned when you’ve met one child with autism you’ve met one child with autism, each child is unique just like we’re all unique in this room. And that’s a challenge because when people see a child with a label they expect them to be very similar to the next child with the same label and that’s a challenge because each child is uniquely different.

Robyn talked about the spectrum and historically we’ve thought of the spectrum as linear: at one end a child who maybe doesn’t speak and at the other end a child who can speak very, very well but has great difficulty joining in conversations with other people. I like to think of the spectrum as more broader than that and like a paint spectrum in that you’ve got all these human skills and characteristics that have different strengths and different areas of challenge that children and adults with

autism experience - so it’s not necessarily a linear spectrum but it’s a more holistic circular spectrum, thinking about all those different colours and abilities that humans present with.

Robyn And if I could just add to that, I think when we’re talking about that spectrum it’s important to realise, too, that people with autism can travel along, around, over, under that spectrum as well so they might be diagnosed or assessed at a particular point but that can change at any time.

Dean And that can also change in a day depending on the environment that children are in and that often relates to the sensory environment that children are involved in. If you think about preschools and schools and even the community, going to a supermarket, all those amazing sensory things that many children and adults have learned to filter and deal with, children and adults with autism often struggle with those things such as lighting. This room that we’re in is quite sensory in that the sound has been dampened down; for some children I know, they’d struggle to be sitting in this room because of that unusual sensory characteristic.

Bridget And I’d just like to add, as a parent, with your question you were asking earlier about do parents… Because autism is so different for everybody, if you meet other children you do tend to get to know their characteristic because they’re all so different and I think the key focus is to really highlight their looking and focusing on their abilities because people tend to think having two children on the spectrum - and like Dean and Robyn explained, it can change daily in terms of how they’re feeling, in terms of how they look to others - but you really need to get to know them and their abilities because their potential is unlimited.

If we look at the challenges they face we miss the massive opportunities they have with the strengths they have. So for example, my youngest son was preverbal until he was seven and my oldest son was verbal at the age of three so a lot of people assumed that my older child was the term ‘higher functioning’ than my younger child but my younger child has got exceptional talents in the areas of his key interests. So it’s very individual.

Sally That’s very interesting. And Dean, if you could maybe just tell us why you’re taking part in this panel.

Dean So I’m a speech and language therapist by training, I first came across people with autism perhaps 20-odd years ago when that label and that term was relatively new. And I’ve always been fascinated and enjoy the interactions I’ve had both with children and adults and their families. I’m passionate about supporting people who might have challenges participating and being valued in their communities and their school and wider society and that’s something I’m passionate about and I’ll do whatever I can to support people to ensure that they are participating, their voices are heard and so forth.

Sally And Mal, you’ve come along to co-host today and I’d like you to tell us a little bit about why you’re taking part because you can also be contributing to this discussion.

Mal Cool. So my name is Mal and I obviously am co-hosting today and I work as an Outreach Coordinator and Lego coordinator for Autism NZ so I’m just coming along to help Sally, give her a bit of a hand with asking questions and participating.

We’ve sort of talked about what autism is and how it’s a wide spectrum and everyone is different. Does that make it difficult to know what the causes of autism are?

Dean The causes of autism are a range of genetic and environmental causes, we don’t know the combination of those. Interestingly there was a study that was published just recently about blood tests and autism and there’s been a lot of discussion around that. That doesn’t give us a cause or reason for autism, it’s suggestive that children with autism have some DNA characteristics that might set them apart from people that don’t have autism but that certainly doesn’t shed light on the cause of autism which is still under investigation and people have various theories and there’s obviously a lot of research going on and I think as time goes on we’ll learn that autism is caused by different combinations of genes and environment, but for one child those causes might be different from another child.

Robyn Absolutely. I think that just helps exemplify that individual difference, doesn’t it? This genetic predisposition and the environmental factor and they don’t know what those genes are yet - they’re getting close, I think, they’re starting to nail that down - and the environmental - is that in utero? Is it not? Is it just the general environment? - so there’s a lot to be done yet.

Dean There is no autism gene - we know that - but there’s likely to be wide combination of genes and those combinations will be quite different for different individuals, I would imagine.

Sally You mentioned, Dean, that you got involved about 20 years ago and that was sort of when autism was becoming more known about perhaps. Is that connected to the research that’s taking place now? Is it still a relatively ‘new’ - if I can use that term? - spectrum of disorders?

Dean It is relatively new however autism has been around forever and it’s prevalent in every society that we know of in the world so it’s not unique to New Zealand or European or any indigenous type cultures necessarily. There’s certainly a lot more media coverage around autism than there has historically. Unfortunately a lot of that media coverage is potentially negative in focus; the benefits are that it is making more people aware of autism.

Robyn I think the general awareness of autism has increased over recent years certainly. I’ve worked for Autism New Zealand for almost ten years and in that time I’ve seen a massive increase, an increase in understanding. Better acceptance, I think, and a better willingness towards inclusion. There’s still a long way to go but I have seen a shift, both in the community, in schools and just generally - public awareness - and I know that at Autism New Zealand we get a lot of requests to speak to Probus groups and Scout groups and a wide range of community groups because people want to know more and I see that as a huge positive.

Mallory So I put this question in just because it’s something that I get asked about a lot when I speak to families.: Is there a link between autism and immunisations?

Robyn No. There was a study many years ago that came up that did link autism with immunisations especially around about the 18 month triple vaccination; however, that study has been totally discredited, and the person that conducted that study. And there’s been subsequent studies that have now disproven that link between immunisations and autism. And those subsequent studies had much more stringent - Dean, this is probably your area as a researcher, really - more stringent cohorts and much bigger samples, totally discredited that one previous study which did a lot of damage.

Sally Is that why people have you been asking you Mal, just because of that one study?

Mallory Yes just because of that one study. So that study came out and a lot of people just took it as fact which is quite damaging because people stopped getting immunisations for their kids as well. So it’s really good to let people know it’s not true.

Dean And I think one of the reasons why people came to this idea that perhaps immunisations had something to do with it was the timing. Children start to talk typically around that 12-18 month age when those immunisations are provided and some children with autism develop language and then they lose their language and that again is about the timing of those things happening.

Robyn And I think from some of my work with Autism New Zealand and working alongside parents that are other people I’ve learnt the most from, you get that diagnosis around about that age or a little bit later and quite often you’re looking for reasons and so it’s looking for that coat hanger: What caused this? Why me and why my child? And sometimes you see something like immunisations and you think ah, so that’s why. It’s our job to turn that around.

Sally OK, so it’s probably time for our first break now and we’ve got Bridget’s choice of song which is ‘Smoke on the Water.’

MUSIC BY DEEP PURPLE – SMOKE ON THE WATERSally Welcome back to “Speak Up” – “Kōrerotia”, I’m your host Sally Carlton

and co-hosting today is Mallory Quail and we’re speaking about autism with Robyn Young, Bridget Carter and Dean Sutherland. Mal, you’ve got a question to kick-start this next question.

Mallory So as this is a human rights radio show: Aave you guys ever thought about autism and human rights before?

Robyn Yes, I think there’s a lot of potential issues around human rights and especially if we think about children who perhaps don’t have access to full time schooling, if we think of adults who are in maybe residential services or in full time care. We just have to remember that these people are people, they have rights like everybody else and autism doesn’t deny them those rights or take them away, the rights remain the same.

Dean I was at a conference in Edinburgh last year and there was a lot of discussion around people with autism and their interactions with the justice system both in the youth justice and adult justice system and I heard some tragic stories about young people with autism being interviewed by police for example and not understanding what was involved in those conversations and how some of the things they were saying were basically incriminating them accidently because they didn’t understand what was actually required. I think there’s a great deal of work needing to be done in various areas: access to schooling, access to participation in community - particularly when we get into the justice system - and the challenges that are involved in communicating and understanding how that process works and I think there’s a lot of support required and I think it’s one of the areas that a lot of resources are going to be heading towards in the near future.

Bridget As a parent, there as well, I think there’s lots of great things happening from what I’ve seen from our oldest one - 18 diagnosed at the age of 3 - there is a lot of things happening to prevent that from happening. So for example just an experience that we’ve had ourselves with schooling and a lot of other families I know there are a lot of challenges out there but I think that whole awareness that Robyn was talking about getting out there and talking to groups like Scouts and things like that, we’ve had things like that in our local area where our son was excluded from the library because the staff weren’t really understanding him but we just went back and talked to them and gave them information and he’s included and welcomed. So I think the more we can get that awareness out there the better the understanding for us when they’re in their situation like that.

Robyn Absolutely and I know we’ve had several instances where we’ve been called in to support people in the justice system in particular and so we don’t advocate for that person or whoever it is but we advocate for autism and understanding that and explaining why those behaviours

might have happened. Rather than saying it’s an excuse, it might be an explanation. And we’ve had quite a lot of success, I think, in the justice system with various young people simply because the judges and the lawyers have a little bit of knowledge around the whys.

Mallory Did you find that that’s made a difference in the past, just explaining what autism is?

Bridget Absolutely. I think disclosure is a big thing but I think it’s something you’ve got to tread really carefully around as well, it’s again such an individual focus but certainly it’s been a positive for me but I know it’s not an easy road for a lot of people and a lot of families out there and their children are excluded and I know there’s a lot… a lot of it is just a lack of awareness and understanding with ASD.

Dean And when it comes to understanding, I think it’s an ultimate exercise in empathy, it’s trying to put ourselves in the shoes of the child or young person with ASD and their families to try and see the world from their experiences and how they might be dealing with that day that situation and really understanding why they do the things they do or why they react… It might make us feel uncomfortable or put us into our fight or flight modes but I think when we can put ourselves in their shoes we can understand and build that understanding to support and ensure they can achieve the great things that we know they can achieve.

Bridget And I guess that can sometimes be more difficult for people that don’t understand autism because, as we know, every kid is so different. So someone might be quite highly intelligent and then have sensory issues and someone that doesn’t understand the sensory issues might not understand why they’re behaving that way when they think that they should know better.

Robyn A little bit like the person who can programme computers and break every password that’s ever put in front of them but they can’t tie their shoelaces. There’s all those abilities, as Bridget talked about earlier.

Bridget There’s so much we can do as the community, it’s so much easier for us to be able to adapt environments - particularly if it’s environments where people with autism are involved with: the school or community environments - it’s so easy to adapt an environment for them to be able to… Ao we can see that potential, we can support them to feel their sensory needs are met.

I think it’s hard like for myself as a parent because people will look at your children and think wow they’re so gorgeous and then they may do something that’s a bit different and they don’t understand because they look like everybody else and then the sensory needs obviously are invisible as well. Like, 99% of children on the spectrum have auditory processing difficulties and that’s really hard to see but if you can imagine what something like that is like for yourself, if you’re in a room that’s so

so awfully loud or overwhelming, you’ve probably got ways to be able to manage or get away from that but people with autism that’s really hard.

Mallory Can you just explain more what the auditory processing stuff might be like?

Bridget So for example our older and younger sons both have auditory processing difficulties so they’re getting too much information so everything is heightened in terms of sound. So if you’ve thinking about a busy environment like a classroom and then just the movement of the chairs, sitting down, people coming in and out all together at once, the teacher is talking, someone else is talking, the projector is going in the background and not able to filter out things so things are definitely a lot heightened. We can block noises out around us like just here in the studio but for them it’s really difficult when they’re expected to do a task or concentrate or focus on something they’re finding it really difficult because they’ve got this overwhelming sense.

Mallory It’s so much harder just to focus on the person talking because there’s a million other things going on.

Dean Compound that with the visual stimulus, the smells that might be happening, they might be wearing some clothing that is really bugging them, there might be a tag on their shirt that is scratching away at their neck so there’s all these other things that can combine to that great difficulty on actually focusing on what the teacher might be expecting in the classroom situation, for example.

Bridget Like Dean said, if we can put ourselves in their shoes or try to see… I’m always as a parent trying to look at things from their perspective when I don’t understand something because I see myself as an apprentice as a parent because I’m learning each day but trying to get yourself from their perspective, in their shoes of what it’s like for them otherwise it’s quite hard to be able to understand.

Robyn And I think for those of us that we describe as ‘neurotypical’ that perhaps haven’t been diagnosed with autism, we have a sensory filter - and both Dean and Bridget have mentioned that - that we automatically filter out things or can consciously filter out things that might bother us. Somebody with autism doesn’t have the same ability to use that filter or that filter may not even be functioning so the sensory overload can be enormous.

Dean And that can also relate to emotions and how individuals with autism might be experiencing emotion, it might be a welling up of sadness and then it might lead to anger and recognition of that and understanding of how that’s affecting them physiologically and their ability to actually be involved and remain calm can be a huge challenge as well.

Sally We’ve spoken about the various sensory issues, there are no doubt a lot of other challenges and I think Bridget you mentioned you invisibility and

autism not being something that’s visible, that people can’t see and I would imagine that there are a lot of issues that come from that and also the fact that everybody is different. I’m thinking, for example, of funding and autism not fitting necessarily in mental health funding and not necessarily in other types of funding either so any comments on those sorts of things would be really good.

Robyn The diagnosis of autism doesn’t automatically bring any support and the way the New Zealand health system is operated, do you have mental health and do you have intellectual disability? Autism doesn’t necessarily fit either of those so there’s a little bit of a chasm down the middle and autism sometimes disappears down that hole. So there’s no automatic right with a diagnosis that you will get this and this which in itself presents lots of challenges, many of our children in schools do get support, I think we always want more than what there is available but I think it comes back to that understanding of autism again. If people have that understanding, that knowledge, that ability to get inside that person’s head - and it’s accepting individuals for who they are, looking at their talents, looking at their special characteristics, their abilities - then that can go a long way as well. So yes, it is about funding, it is about support certainly, but it’s also about understanding.

Bridget I totally agree with Robyn and just adding to that, funding can be a real challenge, as Robyn has mentioned, for families and it can be a battle for many years and some families are struggling when their children are in their teens to have the support that they need. But as Robyn mentioned it’s really important to have all the other supports around that don’t involve the funding. There’s a lot out there, it’s just having the right people around to support you with that, there’s many organisations but I think also from a parent that has a child with funding and a child that doesn’t have funding you’ve got to make the most of what you’ve got. Sometimes you might think that you’re not as privileged because you haven’t got the funding but you can’t think that way, I haven’t felt that my son that has got funding has had more of an advantage than my older son, I think it’s made us work harder and gain the supports that our older son needs. So the message is really to make the most of what you’ve got and work with what you have.

Mallory That’s so cool, just keep coming back to just working with the individual like working on their strengths which is really cool. Bridget, I was just wondering with you did you have any… What would be the main challenge be for a mum or a family member of someone with autism?

Bridget I think understanding from others. Particularly in the early years with our younger son - as I said, pre-verbal until seven - and very much with the sensory we’ve been talking about, he’s very much a sensory seeker. So you’ve got children that are hyper- or hypo-sensitive to sensory input and so he is very much hypo, not getting enough sensory sensations so he was very much… His whole early years were running a fence line and squeezing mum for a bit of a sensory hug not a real hug and like I said

pre-verbal so we had a lot of work cut out for us. People were always seeing him for what he couldn’t do and so all his goals around early intervention were starting from what he couldn’t do so at the time I was doing early childhood training and he was in the centre that I was in and his lovely ESW from early intervention and I kind of ignored those goals and plans from intervention team and we started to focus on the positive and that was a huge turning point for us. I could see him for what he was capable of but his other educators around him were… And that’s taken a huge shift now he’s aged 14 now and I still have people saying wow, look what he’s doing now.

Sally That’s a really nice positive place to have our next break and Dean you’ve chosen for us: Underworld’s ‘Born Slippy.’ Was there a reason for that?

Dean Basically the movie Trainspotting - people might have seen recently, the second version is out - and I remember living in Edinburgh when the first version was filmed so it just… And there’s some characters in that movie that might have characteristics with people with autism.

MUSIC BY UNDERWORLD – BORN SLIPPYSally Nau mai hoki mai, you’re with “Speak Up” – “Kōrerotia” and your host

Sally Carlton. We’re talking about autism today and co-hosting with me is Mallory Quail. Our other guests are Robyn Young, Bridget Carter and Dean Sutherland and we’ve been talking about some of the challenges that people and families with autism face and this section is going to be talking more around some of those abilities, those positives that we’ve touched on already. We’ve spoken a lot about it, but what is it that makes children and adults with autism so special?

Robyn Just who they are. I’m the eternal optimist: everyone is special, everyone has a special talent, everyone has special abilities and people with autism are no different in that respect. Sometimes It’s harder to find that special ability and that special talent, it might take just a little bit longer for that to emerge.

But one of the characteristics of autism is a special interest or a focused interest and that’s something that that person is really passionate about, they might be able to tell you everything about Fisher & Paykel washing machines but they may end up in a career working in the whiteware industry. And we’re often promoting that special focus as a way of opening up communication challenges, opening up different ways of learning and using that to establish that relationship that’s so important to form a foundation of everything else, of all other learning. So everyone has that special interest, that special focus, that ability, that talent, and sometimes it’s just working and finding out what that is and then using it.

Dean And it’s exciting to see employers and organisations and businesses starting to realise the benefits of having an individual with autism on staff, that ability to focus and maintain a high level of output, there could be

creative aspects to it, there could be unique attention to detail such as computer programme, design, a whole range of industries that individuals with autism can make a huge contribution to. And we’re seeing employment agencies internationally now are starting to try and recruit specifically people with ASD which I think is a fantastic advancement.

Robyn Just recently I’ve had the privilege of being involved with a very large company based here in Christchurch and they have several employees who are identified as on the spectrum and they were just so willing to change the environment just slightly to help these people be even more successful and the value that they place on the staff members was just heart-warming and they were all young men in this particular situation and they’re very valued with what they do. They have, as Dean mentioned, incredible outputs; they’re given a job and they do it 150% every single time.

Sally That’s really cool to hear, actually.

Bridget I also just love how one of the characteristics is that real logical thinking, it’s real interesting talking to someone with autism because they’re so logical that sometimes it can be frustrating for a teacher or something because they might not do their maths because they did the day before but they already know it so they don’t know why they have to do it again but you can’t argue with that logic, it’s so clever and really interesting to talk about.

One other thing I love about the special interest too is there’s a lot of evidence now and its evidenced-based practice, a strategy for actually supporting people with autism like Robyn had mentioned… Being able to use their strengths and their abilities around their strengths to support them in other areas of the curriculum. Our older son has been passionate about trains right from when he could walk and it’s been great to see his journey throughout his school life and how the teachers have been clever and being able to include that in different areas of the curriculum and seeing him being successful through his interest.

Dean We used to think that special interest was getting in the way of learning and so forth but now we know… I mean, my advice to any educators out there would be if the child with autism is not engaging in something: Is their special interest part of that task or activity that you’re trying to get them engaged with? Because if it is there’s a likelihood that they will participate or engage in it.

Mallory Like if they don’t like writing, get them to write about trains.

Bridget And like all of us, like we said, we’re all so individual and unique and imagine if someone told you to do something your whole life that you absolutely hated and detested and you had no idea what to do or they included something you were passionate about you’re going to be so

much more enthusiastic and probably more likely to engage with other people as well. That’s another positive about that interest is that they’re definitely much more motivated to engage with other people and there’s so many neat clubs out there around people’s interests that they’re drawn to each other and they’ve got their own little wee clubs going.

Mallory So we were speaking in the break about autism and girls, is that more or less common than males?

Dean Well current statistics suggests there’s four boys with a diagnosis of autism to every one girl but we know that’s underrepresenting girls with autism for a number of reasons. And Robyn, you were mentioning how girls are good at…?

Robyn Girls are traditionally - and this is a generalisation but it’s a true one! - girls are generally better at mimicking socially appropriate behaviours. So often especially in the school setting, they will sit at the back of the classroom, they will observe and then they will mimic socially appropriate behaviours and that sometimes is a little bit of a veil over the autism and so it’s not picked up as readily. Now that we’re aware of that, there are more girls definitely being diagnosed with autism and especially in the last few years in my work I’ve seen many more girls coming through the diagnostic process so I think those stats are possibly under review or will be reviewed. Traditionally, boys have been picked up more readily but now that we’re aware of that gender difference, as it were, I think those stats will change.

Sally Robyn you mentioned diagnosis, what kind of process do people go through to be diagnosed on the spectrum?

Robyn To get a diagnosis of autism it’s a clinical process - it’s not a medical condition so there’s not a medical test as in blood test or anything like that - it’s a clinical diagnosis usually done by a psychologist or sometimes a psychiatrist but generally a psychologist and many observations, a historical account of the child’s development is really important and there’s very clearly they use the DCM-5. There’s a list of criteria under the headings that Bridget mentioned earlier - social, communication, interaction and then repetitive behaviours and flexible thinking- and there’s criteria in each one of those and you have to match a certain number in each section to get that diagnosis. Sometimes people show considerable traits but don’t get a full diagnosis.

Dean An important thing about those observations in the assessment or diagnosis process is they should take place in different environments at different times of day over a period of time, it’s not a one-off. You might meet a young child who doesn’t speak to you or gives you some indication that there are autistic-like behaviours, but it might just be because of what’s happening in the day for that child, they might be different at home, they could be different with different people in the environment as well so it’s important to get a really clear picture over a

different range of contexts with a different range of people over a period of time.

Robyn I think that’s really critical, Dean, in terms of having those observations over time in different environments and sometimes that in itself is frustrating for parents because you enter the system for an assessment and it takes time and it may take months, it may take a couple of years because we don’t want to get it wrong but it’s to make sure that that child or adult is observed in many different settings.

Mallory Because what we quite often see is the child might be OK at school and then come home and have all the behaviours and I think it’s because they’re just concentrating so hard at school to keep it all together with all the sensory stuff going on and so focused. Then when they get home, they’re safe and exhausted and kind of let go because they feel safe. So mum is saying. “Oh this is what’s going on” and the school is, “Oh they’re fine here” but really is kind of like a learnt…

Dean And that’s another important aspect of supporting children with autism is that communication between home and school, parents are caregivers, teachers and staff at school - it’s critical to that ongoing support. And I know Bridget has had a lot of experience as a passionate home/school communicator.

Bridget Yes you really need to have that collaborative approach, you need to work together as a team, it’s not just one person and like we said the environments can be very different, they can be very settled… They might be very settled at school and the structure is working really well for them and vice versa at home so it’s really different. But again, the sensory issues do come into account when they do sometimes explode at home for poor families and hold it all again and again it’s visible and teachers will quite often comment well they were listening, they were looking at me and they were nodding in agreement but that’s a strategy that some of them do develop to deal and cope with the day and then at home it can be very different. So it’s very important to have that communication between home and school, working together. So again we talk about children with autism can be different in different environments so that whole generalisation of different skills and the school might not see those strengths as well that they have at home so it’s really important to be able to support them to be able to generalise between home and school.

Mallory Did you notice that schools were quite open to communicating with you?

Bridget I’ve had a very positive experience, I’m very lucky, I live in a small rural community and I think part of that has been as a parent getting out there and trying to educate the community as well, sharing information that is important for them to know particularly in schools and I feel very privileged. Like I said, my son was pre-verbal until the age of seven and the school was honoured to have him. So the mainstream has been

fantastic - and I know it’s not for every child because again they’re all very, very different and their needs are all very different - but it has worked for us. But it certainly has modelled going throughout school that communication.

Secondary schools can be very different because there’s a lot of people to be involved and I’m not saying it’s easy - I haven’t had an easy road and we’re still working on that communication - but I think it’s vital for educators to know that the parents, the families that are with that child are the experts, they’re not just their parents, they’re their advocates, their voice sometimes, they have many roles. So I think it’s important for schools to… And I know it’s challenging for them because they have their own policies and you don’t want to be seen as the person that needs to be told what to do but it’s not about that, it’s about working as a team because the key focus is the child. If you’re not working effectively together it’s the child that misses out, not the teacher or the parents.

Robyn I think that collaborative, everybody working together gets the best outcome.

Dean And also as an educator, understanding that working and supporting families and students with autism will actually increase their own skills and abilities about working with people. I learn so much from people like yourself, Bridget, who have lived experiences, who are experts in autism and their children and it’s an amazing source of learning and professional development. It doesn’t happen in a classroom or in a lecture room, it happens in those discussions and observations and experiences that sometimes have negative aspects but out of those negative experiences can be some really positive growth and changes in how we interact and support each other.

Mallory And also like educators, changing something in the classroom for a student with autism will quite often benefit the other kids in the class as well so just simple things like slowing down will help all the other students equally.

Bridget There’s so many wonderful resources out there but there’s one that’s always worked really well for us as a family and to explain ASD to people in the community and teachers, there’s a book called 10 Things People With Autism Wish You Knew and these ten top things and we’ve got it actually in a profile for our son, an individual profile and again we say the characteristics are all… They look so different but these ten things are the top things that have really helped for teachers and educators to understand our children and one in particular is visuals. I often say to teachers, “Look if you tell him he doesn’t understand, but if you write it down he will.” They can still understand oral language but it takes time to process. So I think those key things, first and foremost… They’re a person, they’re not just a person with ASD, they’re an individual person.

But the visual is really important and again it’s different for everyone,

visuals present in many ways… Video is another evidence-based strategy that’s out there now and working really successfully for some children but definitely slowing down, those ten things are really important for understanding, for supporting them to be successful.

Mallory Yes that support and understanding and working with individual once again, we keep coming back to. We could probably put that on the…

Sally Yes we could put that [resource] on the Facebook page. I’ve just jotted it down and this is actually a really nice time to have our final song, Robyn’s choice which is ‘To Sir With Love.’TO SIR WITH LOVE BY LULU

Sally Welcome back to “Speak Up” – “Kōrerotia” on Plains FM 96.9. We’re discussion autism and Mal you’re going to have a question to kick off this final segment around support and what can people do.

Mallory So what type of supports are available for someone with autism at the moment, or their family?

Bridget From my experience as a parent, what’s been very supportive and vital is Autism New Zealand. They’ve got fantastic courses, a lot of free courses for families, not only the immediate families but the wider are involved as well. They have a fantastic library as well and wonderful programmes and staff that are approachable and lovely. IHC has been another fantastic avenue, that’s got fantastic courses as well. I’ve done a ten-week course for children with autism, teens going through puberty so a very important course to be involved in so both have fantastic courses, fantastic libraries. Life Links is another important organisation to be in contact with because they also will do individual assessment with you and the family and then can find out other avenues out there to approach.

For older people, there is Work Bridge for employment support, there’s that organisation. Another fantastic course is Tips for Autism course which also look at current evidence-based practice - it’s one of the few courses in New Zealand that actually involve not only the whānau but also the educators and they have three full days just to focus on their individual child so it’s really valuable for them to come together. Parent to Parent is another fantastic one. Even your local school if your child is not funded, see if there’s a local RTLB, a SENCO because there’s many things that you can do that’s individualised to your child. Like for example what’s worked for us is individual profiles for our children so the educators are getting to know them individually not just seeing them as having ASD so individual profiles are another one that’s worked for us.

Sally What’s an RTLB?

Bridget Resource Teacher Learning Behaviour.

Robyn They are part of the education system, they’re a specialist and they work

with children who may not be reaching their potentials for a variety of reasons.

Sally Thank you.

Dean Three things I’d recommend people consider - and we’ve already talked about the sensory side of things - but trying to understand the sensory environment of children. The other thing around communication would be: How do I make this communication visual? When we talk, our words go into the ether very quickly but if we have things in a visual form that are stable and static that can really support children and adults with autism understand what’s being communicated and shared. The other thing would be about explicit teaching of the social stuff. We’re very good at teaching maths and literacy and all those sorts of things - and many children with autism can do that quite naturally without a lot of explicit teaching - but it’s that teaching of the social interactions and the subtleties of interhuman connections that if we can teach those explicitly step-by-step using visual supports that can really help children in those areas.

Bridget Again we’re really lucky now with technology. You Tube is probably one of the best resources out there for videoing so that’s been really successful in terms of supporting both our children for doing something that’s new at school or being part of something that’s really big in the community, being able to go back. And just something simple - like my younger son was in a 1500m race at school with his typical peers and so we just watched a You Tube clip on a 1500 m race so he can see where to go and not run off outside of the lines - those kinds of things are really helpful.

Mallory That kind of modelling stuff.

Bridget Like Dean said, making it visual, it’s incredible.

Robyn I think it’s also understanding the incredible scope of visuals so it’s not just a picture or a diagram or words written down but with technology - and you’ve both mentioned You Tube and things, cell phones for the teenager, everybody walks around looking at their cell phone, the teenager with autism may be looking at the bus route and the directions of where to go but they’re still looking at their cell phone - so technology is a great friend for people with autism too in a sense so those visuals can take a huge range of formats, it’s not necessarily what we kind of traditionally think of visuals, it might be a text, it might be an email, it might be diagrams, it might be pictures, it might be words.

Dean Or a simple list.

Robyn A checklist, bullet points, what to do in the morning when I get up and tick them off as you go. When we leave here today, we’re all going to use visuals, we’re going to look at the road signs I hope! We’re going to look

at the yellow lines, the white lines and the traffic lights so we do use all of those things. In terms of support, I think meeting other people, so for parents meeting other parents who are travelling a similar journey or have travelled a similar journey and knowing that you’re not alone out there because I know we often get enquiries about people who feel they’re the only one but in fact they’re not and sometimes it’s having the courage and being in the right headspace to meet other people who are travelling a similar journey and I think sometimes those are the best forms of support is meeting… Hopefully… Bridget is a parent, I’m not contradicting anything here but meeting other people travelling that same journey and parents meeting parents is huge.

Bridget I think that’s absolutely true and I think also as a parent is to remember that everybody is on the journey but the journey will look different for every family so if a family isn’t ready to talk or meeting with other people, just got to remember they’re in a different part of their journey and it will look different in terms of what support they want as well and what they want for their child, what’s best for their child, their journey is very different.

Mallory Again just being real individual about it.

Sally And just to finish up we’ve been talking about various supports that are out there, we’ve also talked about increasing awareness of what is autism and just a couple of things that I’d like to raise: Autism Awareness Week is coming up and we’ve also mentioned the new character on Sesame Street. And one thing I really want to touch on, Mal you told me that Autism New Zealand has been involved in working alongside the Court Theatre to produce - what’s the title? - The Curious Incident of the Dog in the Night Time so that might be another thing if anyone has listened to this, tto think about that’s another way of going and learning about what is autism seen from a particular point of view but it sounds like they’ve done quite a good job in terms of visually representing.

Robyn The Court Theatre have done an amazing job with this particular book, representing the book, The Curious Incident of the Dog in the Night Time and I think it’s an outstanding piece of theatre in every sense of the word not just because it’s autism but it is quite a phenomenal production I think in absolutely every sense of the word. And they capture Christopher, that person with autism, incredibly well - remembering that the next person with autism might be different to Christopher - but I think in terms of raising awareness and providing some education around autism… If you like theatre, please go to the Court production, it is amazing.

Mallory I definitely think that The Curious Incident of the Dog in the Night Time is a good play because it shows the challenges - so there’s the challenges with the justice system, with the schools - but also a lot of his strengths as well like his ability with mathematics and even forming those relationships with his pets, it’s a really cool rounded story.

Robyn I don’t want to spoil it for people who might go but it finishes on an absolute high with such a positive that points out Christopher’s abilities, it’s just wonderful.

Sally Now just to finish off, are there any final comments you’d like our listeners to go away with?

Robyn I think for me, when somebody has autism there is nothing wrong with them, a child or an adult, a person with autism there is nothing wrong. They are different and they see the world differently and that’s how it is so we have to cross the bridge and meet them in their world.

Dean And by meeting them in their world, I think we’ll create a better world, a more inclusive world, a more understanding world and better human relationships and connections.

Bridget And a bit more diverse, it’s cool, it’s OK to be different, it’s actually quite a lovely thing and I think for me as a parent just the message out there if you meet someone with ASD remember them for something positive, their beautiful smile or their ability with what catches their attention. Like we talked about their strengths and interests and just their own individual personalities and their strengths, that would be one key focus is just focus on them and find something positive and talk more about and focus on what they can do if you are an educator. It’s important to identify their challenges but it’s far more important to encourage and build on that happiness and wellbeing which for anyone if we’re happy and we’ve got wellbeing then we’re more… To learn a lot of things.

Sally Well I’d like to say kia ora then, thank you so much for coming in and sharing your diverse expertise with us.

Dean Thanks, Sally.

Robyn Thank you.

Bridget Thank you.