Takiwātanga with Dane Dougan of Autism NZ

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Pre Intro message:

In this episode, we have invited Dane Duggan. He is the chief executive of Autism NZ. He is managing 16 Autism NZ branches around Aotearoa. We are fortunate to have him here with us today to talk about their programs and how they support families across the country.

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Approximately one in every 59 children are born with autism. Albert Einstein. Doctor Einstein had no speech until age three. Steve Jobs, he was a loner. He brought snakes to school. Leonardo Da Vinci. This man was far advanced on the autism spectrum. I’m not naughty, I’m autistic, and I just get too much information.

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This is Lloyd I Am, and you’re listening to Takiwātanga Love Not Cure exploring Autism One Strength at a Time.

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Hi Dane. Hi, thank you for having me. No worries. Thank you. Since you were in this company, is it company or organisation? Organisation. We’re a charity, we’re not for profit. Yeah. So you’ve been here since 2013? Yes, I am, almost 10 years.

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Okay, so how is it? Good. I love working for us in the community. When I took the job, I said I only be here for three years, of course, but you know, the autistic community is a pretty special. Community and then the things we do and just trying to help and support the people who live the lives they want to live is pretty exciting.

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Ten years later and probably a few. more years left for me I think. What drove you to stay that long? Firstly, I want to get into an organisation that helps people. So I applied for this job.  I still hope, but as I said, just being in the job and to see what we can do and hopefully the difference we can make because of the fact that our community has generally left behind a bit, I think,

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I think the system is not really set up for your community. So we’re trying to create big positive change that’s going to help lots of people and that’s what’s exciting.

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So tell me about the programs you have here. Yeah, so basically two main service delivery parts. One is our education programs. We’ve got education programs that we will be running anywhere around the country during school term. We’ll probably be running two or three education programs, government funded. Some of them are our own community programs.

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So we’ve got an introductory course called FAN, which is Framework for Autism in New Zealand, which is, I guess, your Autism 101 sort of program. Just a bit of understanding of autism. It’s two days, so it’s a pretty big commitment, but we really get positive feedback about that. Way to Play, which is one day, which is just taking a strength based approach to playing with your child, figuring out, focusing on what the child is interested in and then putting games and playing in place so you can play, which is pretty cool.

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As a dad, as you know, there are three kids. Being able to play with your kids is one of the coolest things.  Way to play is a pretty special course, I think, that we run.

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And then we’ve got a couple of government contract ones. Tilting the Seasaw, all for teams, which is for teachers, teacher aides and a member of a family, Whanau member of the support network. So it’s a team approach to support. And we also have a program for the Learning Support Coordinators, the newly created role two or three years ago, three years ago, just to give them some professional development and to increase the knowledge of autism.

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So essentially that we do also bespoke training and things like that as well. So we’re doing many different. So education is really, really busy. Outreach, so we’ve got 16 branches around New Zealand. Some branches have three or four staff, some branches have one person working 10 hours a week. So it’s a bit of a challenge for them.

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But essentially our program is all about providing information, local advocacy, local connections. Connecting people to other services when they need it, because we’re pretty good at understanding what’s needed and also helping people get into a position where they’re in the right frame to be able to get funding from government and things like that.

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So we help people from those type of things as well. But that’s very varied. It’s always different. Outreach is different all the time.

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Do we have the same program across the 16 offices or branches? Outreach is the same, but different. So there’s similar skill set, similar types of work, but it still depends on what’s available into your area. So that perspective is a local flavor as well.

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Those courses that are running around the whole country at different times. So we’ve got an education team that flies around the country and runs them. And then we’ve got our outreach program run in our branch locally. And we also do employment as well in transition.

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So in Wellington and Auckland, we have got employment for adults, which we’re pretty excited about. And we’ve placed probably close to 100 autistic adults into employment, helped place 100 autistic hours into employment over the last five, six years and about 80% stickability rate to be pretty excited about.

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So do you do like transitions as well? I mean, like employment, of course they transitions to the new company. In Auckland we’ve got a transition contract. So we do that, that’s government funded, that’s funded through the Ministry of Social Development.

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So we only run those in Auckland, and Wellington unfortunately. We’d love to run them around the country, but it comes down to funding at the end of the day. But it’s possible to get that right across the country, right? We can give you help anyway through the branches. We are reliant. I don’t think we’ll be in and around the country anytime soon, but we’ll keep working with Ministry of Social Development and trying to do that because helping people

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into employment is a pretty cool thing. So we do want to do that more than but currently that service is only available in Auckland and Wellington.

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Then if there will be problems, of cours,e it’s no longer going to be under your scope. Like let’s say an autistic person was hired and then he’s got problems with his employers. We do on the job support. So there’s a essentially why we’re so successful is the fact that we try to match it right to begin with. So we work with the strengths and the interests of the person and then try to find an employer that’s willing to match that who’s in a similar field to those interests.

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And then we work with both the employer and the employee to get things ready and so it can be successful. So we still work with employees when they’re in jobs with on job support as well the next for a period of time. So what we find is over time you don’t need to continually help but certainly to begin with is quite an intense period of time. We do try to help and support for these  over a period of time.

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So do we have many employers who are open to… It’s better, I think we just did a pretty big piece on the Sunday show on TVNZ and followed through artistic adults through their journey, which was pretty cool. And I think we’ve seen five more interest now from employers around understanding that it’s not a charity and it’s actually not a benefit. So it’s not just a charity.

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If you employ someone with autistic, if you’re employing autistic adult, you have a very loyal employee who could possibly stay for a long period of time. So people are seeing it now more as a benefit for the organisation as well as the benefit for the autistic. We try to frame it now, not as a charity, it’s actually going to benefit your organisation too. How are we managing in terms of when we had lockdowns last time and then because we have this routine that they will have these sessions every day lockdown and then after the lockdown they can start going back.

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It was mixed actually. Lockdown is a pretty unusual time for everybody, right? But for our community it was quite difficult at the same time because homes we focus on kids and children. I guess homes is a safe space a lot of the times to have school and home and bundled into one and can be quite challenging. A lot of kids really like staying at home and they’re not like staying at home as well. So there’s been a home part wasn’t necessarily the challenge. A lot of the challenges was actually transitioning back into school and we’re seeing now that there’s a higher rate

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in terms of a higher rate of children not turning up to school in general just because that transition back to school has been quite difficult for people. So looking at schooling environment, there’s been a challenge for our community is more about how do we transition the children back into school rather than the lockdown itself. The challenge with the lockdown was for those autistic children who get support, not being able to access that support was pretty difficult for family or Whanau focusing on children here, obviously that was pretty difficult.

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So with adults, adults who had support and they couldn’t get it, that was probably the hardest part. So we tried our best. We developed an app called Autism Connect, which is an online tool, or we were in process of developing it through the lockdown and it’s Live Now and Autism Connect say we can talk to our average team on an app specifically designed by the autism community and by autistics to connect people. But also they can talk to each other on there as well.

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So they can create their own support networks, they can create their own support groups virtually. So it’s a video chat and service delivery platform for us as well. So we knew that we’re still working through some of the technical bumps and bruises on it, but we’re getting there. So that won’t be too far away from properly. Hopefully we’ll go and launch that and bid that and I’ll see this delivery anyway because a lot of our community quite like staying at home.

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So the actual part of staying at home wasn’t really the issue. As I said, the transition back into what we would look like now, that was probably the harder part. And as you said when you came to, a little bit confusing right now. So that was the other part I think is there’s all these new terms, all these new phrases and no one had really heard of before. That was difficult for the autistic community because what do these phrases and terms mean? Bubbles and things like that. I knew what they were and all of a sudden happens and no one really explained what they were. So those things made it really difficult for our community.

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Do you offer online sessions online? It’s different when you are doing face to face session with an artistic person, but doing it online, it’s going to be super challenging. So looking at that as a solution as well. So I never think online is going to replace face to face. I think Face to Face, as you quite rightly pointed out with the autistic community, is really important. But I feel like having online options is also what the lockdown did was speed up our development of our online tools. So most of our education courses now have an online component to it. So we can deliver them online if we go back to lockdown again. As I said, people got used to using zoom or what not anyway.

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But hopefully the Autism Connect online tool is also going to allow people and the feedback coming from the community is actually they didn’t like zoom, some of them, but they like this because it’s simple. Playing with it kept it pretty neutral. Zoom can be quite busy, lots of stuff happening, whereas our system connected. As I said, it’s quite simple. It’s just a video doing three buttons for video chat, for example. And it just keeps simple for our community.

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We just didn’t want to make things confusing. But I don’t think it’s going to replace face to face. I think face to face and this set is really important. I think it’s always going to be. Really important, safety as well in terms of hand sanitizer. And it’s really hard to generalize because you meet one autistic person. You meet one autistic person, as you know, they’re all different, so you treat everyone as an individual.

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But one of the traits are if there’s rules to follow, they’ll follow the rules. So that wasn’t that big of a deal. It was a big deal in terms of maybe the textual sort of the feeling on it. That was probably the issue.

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But the rules were rules, so generally our community will follow the rules pretty closely. I didn’t hear that as much as a big issue. What I’m hearing now is a bit more is masks. And the mask exemption process wasn’t great. They’ve tidy it up now, which was good, but people were vilified for not wearing masks when they had a really solid reason and they had exemptions. So we heard too many of those stories and it took too long to get that sorted out, but we got there in the end.

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So now people have mask exemptions. It’s a far more formal process and I think it’s hopefully going to make it a bit easier for our community moving forward. What’s the youngest person who can be part of that community? Do you have an age bracket? Generally, this research suggests starts to show around about twelve to 18 months. So that’s pretty early. And we’re not good in New Zealand identifying those signs early. So you mentioned your son before he got diagnosed quite young, which is pretty lucky in New Zealand because you can give the right support around him, right.

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Whereas for a lot of our children they’re not diagnosed until 6 or 7 and it’s quite late comparatively. We’ve done a bit of research on this over the last few years around what is the average one time diagnosis in New Zealand, and it’s about two years from when someone sees your child throwing signs of autism through to actually getting a diagnosis. It’s a two year process which is not acceptable, it’s too long.

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And we’re missing critical parts of that child’s life where we can make a significant difference in their lives, a significant positive difference in their lives. So we’ve set up a diagnosis clinic here and it’s a pilot in Petone and it’s running today actually, I think, so it’s probably sitting in the room. Just here diagnosing somebody. Focus for that clinic is really young children and adults because adults are really struggling to be diagnosis in New Zealand through the costly exercise for adults and the early identification is really important.

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So we are also known in other pilots up in Auckland, where we have trained up two of our staff in a tool called Mosaic, which is an early identification tool as early as 12 to 18 months and they’re about to become trainers, train the trainers. We’ve done some work with Plunket. We’ve trained up from 250 Plunket nurses.  looking for signs of autism early but we hope to formalize that a bit more moving forward now and do some more training. Because there’s absolutely no doubt the earlier we identify someone who’s having autistic traits, the earlier we support that person, the big chance that person goes on to live the life they want to live, that’s really important.

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So whilst at the same time still supporting those people who are identified later in life and how we support them on their journey as well. So is it only Petone  for now? Just for now. We’d love to roll it out, but it’s quite complicated. So we’re using the Gold standard diagnosis tool, so it can take up to a day to diagnose someone.

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So it’s only about one a week. We’re doing two weeks. Because it’s only one day a week, it is the gold standard tool. So you’re going to come out of our clinic with a really solid diagnosis one way or the other, whether you’re autistic or you’re not, that should be recognized everywhere in the country, which is really important. So it’s one day result? Only one day a week.

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I think it is. It’s only a small part. It’s still a small cost as well. We didn’t get enough funding to cover all the costs. But we’re only charging we’re charging $500, I think $550, whereas if you went private, it can be up to $1,500 in diagnosis. And public is a significant waiting list. So we’re trying to find a middle ground. We are looking for a little bit it’s not as expensive as privately to come here and get it. At least they have options.

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For me, in terms of our journey, it could be different for the rest or for others. But for us, we waited quite a bit and then Lockdown came and then there’s this huge 200 plus waiting list now that has grown  like, okay, now we have to wait until.  If you diagnose through our clinic, we can link you to our support team here, which is good. So straight away, one thing families tell me all the time, particularly families also adults, is you get diagnosed, you’re given a couple of brochures and wish them the best sort of thing.

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So at least here you can talk to somebody. So we can link you into our volunteer branch, currently vacant or back. If someone filled that role shortly, we can link you into our volunteer branch and start getting support earlier. And ultimately that model would love to take around the country, but again, it’s funding. The more we can get support, perhaps the more the bigger the possibilities. Yeah. The challenge of diversity.

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When you talk to people about funding, that because it is quite costly. They say the government should be doing it. And you’re right, the government should be doing that. So it’s hard to get people to understand that they’re not doing it as well as they should or could be. And we need that support and that funding to do it better or differently or just help people that need help.

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This is creating a significant difference in the lives of the people that we know. Amazing. Which is cool and amazing, but it’s been really challenging for us to get this off the ground. That’s costly during the one day a week is quite hard. We’d like to do more than that. But again, it just comes down to funding. In terms of funding, the more support we can get, the faster the outcome or the better the outcome will be. Funding in general right. It’s a funding for us as an organization, but funding for family, Whanau autistic health, both of those.

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I think the more funding we get as organization, because we’re charity, we’re not profit and money all goes back into the organization to have more people, no one benefits out of all funding just goes back out to the community. So the more we, the more we can do and the more families and adults, the more funding and support they get, the better chance they’ve got to live the lives they want to live. And that’s what we advocate for very  very strongly.

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Everyone deserves a life to live the life they want to live. So we need to equip them with the tools to be able to live. Especially the environment is not built for autistic people, especially schools. So what we do in Autism NZ is we take our social work to autism rather than the medical model. So the society model is how do we change the environment around the person to create the best chance of that child around being successful.

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Most of our education programs are targeted at the family, the whanau, the professionals, the teachers, whoever the employers who can create environment that’s going to make it better for that autistic person. Which means then they have a better life. So that’s the model we take, rather than the medical model, where the medical model is all based on trying to change the autistic person. Now we’re not trying to change the person. We acknowledge that someone needs medical support, absolutely, but we’re not trying to change the person, we’re trying to change the environment to make it a better environment for our community.

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And I think if we do that and we hit that right, it’s a better environment for everybody. Who is funding the organization? So it’s mixed. So we need government funding for our education programs, but that comes at a cost because we have to deliver programs, right? So generally that funding covers the cost of delivering those programs because we need to employ people to deliver the programs.

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So it doesn’t really cover the cost  and things like that. So we get that, we get some donations, which we really appreciate. People donate money to us, which is always appreciated, and anyone that ever wants to just go to the website, have a look, and obviously charity, trust funding and a lot of these essentially that’s the split, three way splits really. Government contracts, donors and charity trust fund. Our outreach program is not funded at all through government. So that’s really critical that we get funding to cover those people because those branches are really important because they fill a massive gap out there in the community. So I think it should be funded through the ministry of health. Personally, we’ve tried, but we haven’t had any success yet.

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So ultimately we’ll continue to try. But I think that’s sort of where we’d like to see hopefully the new Ministry for Disability Issues or Health New Zealand  forward because we’re relatively small amount of money, they can have a significant difference in the community. There’s a change in our health system, like we have health New Zealand and then now we have Māori Health as well. Are we impacted by that? So the Ministry for Disability Issues is probably the big shift for our community. So the disability support services that’s currently set with Ministry of Health are going to move over to the Ministry for Disabled People.

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So that’s the big shift there. My argument is we don’t even know the amount of people who are diagnosed. We don’t even have the data. No, it’s ridiculous WE DON’T HAVE THE STATS?! Do you know how much resource to put in the system if you don’t know how many people are diagnosed? But based on international figures, there’s no reason to suggest it’s any different here. There’s probably about 90,000 Autistic, 93,000 Autistic people in New Zealand. But I suspect there should be more because there are people who were not diagnosed.

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They don’t even know that they have autism. And there’d be more than that. But out of the 93,000 that are diagnosed, only 8000 are getting the disability support services. So only a really small percentage of our community are actually impacted by these changes anyway. And those that get support are really the high complex needs. So everything I’ve been talking about before, if we get the environment in the system right for our community early, and these steps are pretty consistent around the world, 60% of the people will go on to the no support, 30% will need less and 10% will still need the same.

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So it’s always going to be a percentage of the Autistic community that will need significant support. But if we get that support earlier, then there’ll be lesser need for others. Again, research around the world suggests about 30% Autistic people are high complex or medium need. And about 70% are sort of on the lower end of medium and then lower need. But those 70% still need help sometimes. And that’s the challenge, right?

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That’s the really hard part is to get people to recognize the fact that they still need help and they don’t get it. We actually deal a lot with those people that don’t get government funding as well. So a lot of people come to us that don’t because we don’t charge for our average services. We charge a little bit for our education programs, but it’s not significant. But generally we will try to offer our services free of charge if we can. I think some of the costs, especially right now, given the inflation. Yeah, I think $20 a day or $50 a day for our education program, some people I’m not suggesting that easy for some people. So we do always allow people to come across if they can’t afford it and we’ll waive them and things like that. But professionals, we charge them more. So schools, teachers and things like that.

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Not with the government funding courses. The government funded courses are free for attendees. It’s our own community courses, because there’s cost for us for running those. So we need to cover, which is a challenge. So we don’t profit and we’re just trying to cover costs. Do we work with other government agencies like Ministry of Education? We probably work with Ministry of Education more than we do Ministry of Health. So as I said before, we probably see what’s in more of the education space, in the health space.

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Because as I said, it’s all about trying to educate the environment around the person and trying to set up a better environment for that person. We work with Ministry of  Health as well, though, so particularly during Covid, probably until three meetings a week around the disability response to Covid, which was great. So we ran vaccine clinics here. You might have seen that we ran seven or eight vaccine clinics here. So we’ve got probably about six or 700 people vaccination here. Who talking to them? Because I was here at all and I said, well, talking to them, I’d say at least 20% of those people tried to get vaccinated in a mainstream clinic and couldn’t.

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I would have loved to evolve this out around the country, but getting these ones off the ground, my heart left and I try to roll around the country. I was frustrated with a lack of engagement with Ministry of Health, but the local DHB, they did a really good job here. So for credit The CCDHB was the combined Hutt Valley CCDHB and the Porirua DHB  was the combined group. And we’ve vaccinated people from all around the region, which was pretty exciting. Some of the stories were heartening. One of us was hit for 2 hours before we got vaccinated.

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That’s fine, there’s no big deal here. But if you’re in a mainstream clinic, that probably wouldn’t have been allowed to happen. So here, they are just hanging around here, play with toys  whatever they did, and it was pretty comfortable here One person was vaccinated in the car outside. So it didn’t matter. We were able to be flexible for anyone which is great. If a parent suspect that their child is in autism spectrum, can they reach out to you?

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Reach out to your local branch so all the details on the website or to the autismnz.org.nz and your local branch, we don’t diagnose other than here in Petone, but we can point you in the right direction of where to get diagnosing and processes. So absolutely reach out to us. If you’re suspecting someone in your family is possibly showing signs of autism, then absolutely reach out and have a chat to our outreach programs. We can also link you into our education programs because even if it turns out your child doesn’t have autism, There is no harm, it doesn’t hurt. So we suggest you get on those programs as quick as you can.

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Just creates a bit of an understanding of autism and the family unit. And that’s really important. So in our case, again, because when we found out maybe he’s in the location spectrum for my son, and then we thought, where should we go? Do we need to go to the. GP or the Psychiatrist? I mean, like there’s a lot of confusion, like there’s no standard process. Your journey is unfortunately very similar to a lot of other people’s journey. It’s not a clear process and it’s different in different areas and all sorts of stuff. So essentially you’re going to try to get into the child support services within the DHB, which will change, obviously, moving forward.

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But essentially that’s the public approach and you generally have to have a referral from a GP. So generally that’s how it works. Getting a referral from the GP sometimes can be quite difficult. All due respect to GPs, I think GPs are great, but they just add up. They’re a general practitioner so they’re supposed to know a little bit about lots of stuff. So they are not autism experts and that’s not what their job is. So ultimately I think coming to us would be a good start and then we can point you in the right direction from there. The process is different in every area and if you want to go private or public and many different questions. As I said, the wait list is significant in most areas. If you go public, if you go private, it can be quite expensive.

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What is autism in the eyes of Dane? A way of thinking. And someone, I think Dr. Paul Taylor in Nelson and he described it as the autistic brain. Things like an Apple Mac processing system and neurotypical brains like a PC processing system or a Windows processing system. And that’s the challenge because they don’t talk to each other very well. So we treat autism not as a disability, we treat it as a difference in a different way of thinking and then how do we create an environment where those two processing systems can interact differently? And that’s for me one of those. Just a different way of thinking. I acknowledge that there will be people that will need a lot of support as time goes on, but there’ll be some that don’t need much support at all. So how do we get that balance right for our community as well as a really hard part? Because some will be in 24/7 care for the rest of their lives. And a lot of those people who are diagnosed as autistic will have could be more than one diagnosis as well. So they’ll be diagnosed with something else.

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And those people need some different support versus those people who can live a life that they want to live. It’s just getting the right supports in place. Any general message to parents and carers? I think the first thing is if you think your child shows signs of autism or traits of autism. Autism is essentially a group of behaviors that was once lumped together and someone called this is autism, that’s what it is. There’s no objective test. You can’t go in and get tested for it as a subjective assessment. So don’t be scared of it. The sooner that we get that child’s seen, the better.

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And then we collectively, as a country, can wrap supports around that person, hopefully to give them the support they need. And my own chairman said something to me once. It always resonated with me as, look, she had an autistic adult, reasonably high needs autistic adult. Now,  was a teenager when I started and she said, look, every autistic child has given her some great experiences in life. She’s done some amazing things with him. She was out here, we went to conferences and she’s seen things, she’s learned things, and that wouldn’t have happened if she hadn’t had an autistic child. So, yes, there can be some challenges, but at the same time, there’s some really good strengths of having an autistic child.

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And you know that yourself, right? And look, you love your child, so it’s just about trying to find the right support for your child, but don’t worry about trying to fix your child. I think the key part is enjoy your child like everyone else. Have fun, play, do all the things that you would normally do and just keep the right supports around and to make sure him or her can live the best lives they want to live. Great. Thank you. What advice would you give to a self driven autistic person about to enter the real world? So we’re talking about after school. Is that the real world?

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So look at transition providers, if you’re eligible for that. So if you’re an ORS funded person, if you get. Super challenging, yeah, if. You get ORS funding, you can get transition support. So if you’re an ORS funded student, then look at getting transition support. We offer that in Auckland and we will offer in Wellington. But look for other providers and many other providers out there, and that’s a really good start because that can help you get into a position where you have a better understanding of yourself and what it is you’re trying to do out there after school.

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And if it’s employment and you’re open to Wellington, definitely look us up. I think we’ve got a way to list, unfortunately, but definitely look us up. And we can certainly have a chat around how we can help in that space and if it’s other things, like whether you’re trying to go to university or whatever. Some of the universities got really good support networks in place as well. So just make sure you’re fishing out the right supports. It all comes down to the right supports, really, at the end of the day. And universities now, I think, have improved significantly around the supports for the neuro diversity community.

[00:31:00.240]

I think they have. They’re still not perfect by new stretch, but there’s supports available, so make sure you’re out there looking, see what’s available. And if you need help, with that, we can help you with that. So definitely contact your local branch. How can people find you? The best way to do it is autismnz.org.nz and all our content details are on there, the branch details are on there. All our courses, all our tools, it’s all readily available on the website. You just have to register, I think, for some of them, once you register, you have access to that particular tool. It’s free charge, as I said, some of the courses will be a small cost too, but overall, most of our services  are free of charge.

[00:31:37.840]

So just have a play around on the website, there’ll be some information on there. And then you should go to branch  and contact your local branch or download autism connect, which is a web based app, as a PC based app. So on your computer, so you get access to that. If you’re registered, you get access to that. It opens up a whole. You can access any of our coordinators  names through that as well. So it doesn’t matter where you are in the country, you can access anybody, which is talk to other autistic people as well and set up your own support groups on there if you want all those type of stuff.

 [00:32:09.360]

It’s all stuff directed to the support. Anyone can do that. It’s a secure platform, that’s why people like it. So there is a registration process, so it’s not like Facebook or anything. You have to actually provide us with an ID to prove who you are because we want to keep it safe. But you guys can, your family, absolutely. So you could go on and register and talk to other families and things like that, if you wanted to, or talk to us to get us about the experiences and stuff like that.

[00:32:35.880]

So do you need proof of like, if they were assessed? No. We just need proof of who you are because we just want to make sure it’s a secure spot space, that’s all. Just proof of you, that you are you. And you don’t need proof of any diagnosis or anything, just quite a few people who come to us aren’t diagnosed as well, so we get quite a few undiagnosed people as well. Thank you very much.df

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