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Autism in Australia with Karina Barley | EXPLORING DIFFERENT BRAINS Episode 17

In this episode, Hackie Reitman, M.D. welcomes Karina Barley, founder of Project Autism Australia and Project Autism USA. Karina discusses her the importance of technology in teaching the neurodiverse, the need for teachers to evolve their methods, and the importance of parental support for the autistic.

For more information visit:

www.ProjectAutismAustralia.com

www.ProjectAutismUSA.com

Or e-mail Karina at: karinabarley@gmail.com

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HAROLD REITMAN, M.D. (HR)

Hello there, and welcome to another episode of Exploring Different Brains. I’m Dr. Hackie Reitman, and today we have a very special guest, all the way from Australia: Karina Barley–The founder of Project Autism Australia and Project Autism USA. Welcome, Karina! How are you?

KARINA BARLEY (KB)

I’m really good, thank you. How are you?

I’m okay, but I’m embarrassed because you’re so far away, that we called you an hour earlier because we forgot about the daylight savings time change since we’ve booked this. You know?

That’s okay. Not a problem.

Why don’t we begin by telling our different Brains audience who you are and what your doing?

Okay, let me try to read a little off. I’m an educator. I’ve been a teacher in–we call it Primary, so Elementary School for–oh gosh, nearly 30 years–long time, and I’m not longer in the education system, so I went from Primary teaching over to Special Ed teaching, and that’s where my interests in special ed, and particularly in autism grew. I had some children in my classroom who had autism and they could reel off the scientific names of all the dinosaurs and herbs and all of that kind of thing, and yet they could not look after themselves in terms of putting their clothes on or–it just sort of didn’t match–didn’t make sense to me.

So I started to investigate and wanted to learn more about how I could teach them. So my journey began with that about 10 years ago, and I then have–just got the iPad when it first came out, and my imagination was peaked, and I really believed that it could make a difference. And my principle saw my vision, and allowed me to have a full set of iPads in my classroom with my kids who had autism–I had 10 with autism–and the differences were phenomenal. So from there I did end up integrating, you know helping the whole school integrate iPads into their classrooms and I decided at the end of the year to actually leave and start my own business and start teaching teachers and then also consulting 1 on 1 with children who have autism. So my role’s currently to provide professional development for all teachers, both in Australia and the US. I’ve written, I think its up to 20 courses now with a variety of autism, special needs and technology-based as well. And I’ve been picked up by a couple of the universities in the US, and I was just in the US recently seeking to get my courses into other universities, hopefully, and then also I still have my ongoing role as a consultant and I just got a job last year working at 1-s University, and I’m also doing my PhD. So there you go, I think that covers it all.

I think you need another job. I don’t know.

Yeah, I need a holiday.

You’ve presented in the United States, you’ve presented in Australia. To somebody like me who’s not well-traveled what’s the big difference between autism in Australia and Autism in the United States, if any? Just from your perspective, I don’t mean for a scientific treatise, but you know, what have you observed?

I think definitely the way that you–well there’s good and bad in both countries. We still heavily rely on our special education system so we have completely separate schools that are separate entities of their own, and I, personally, am not for that. I really believe in an inclusive model, and so there’s a slow move now in Australia to have more inclusive models, so those children will now go and be integrated into mainstream classrooms, and there’s a push by parents to have a more inclusive model. In the US, I can see that, you know, you do seem to have a more inclusive models, in most of the states that I’ve been, and I’ve been in 13 now, and from what I can tell, your talking inclusion, but when I’ve actually had the privilege to attend a couple of your IEP meetings with a couple of parents and it seems to me, though, even though the children are inside the schools, they’re really in separate areas being taught in separate areas. So I think that’s the main difference, you know–the US looks like it has an inclusive model but it still really is excluding children within the mainstream arena for at least the majority of the time.

Now how did you get involved in Singapore?

Singapore is–I haven’t really had a lot to do with Singapore, but–TT–I work for Teacher Training Australia, providing professional development and they brought Singapore onboard basically. So there’s quite a lot of teachers over in Singapore who, yeah who are teaching in English speaking classrooms and so they take out professional developments. So its a small arena at the moment, but yes.

Now how are your kids doing?

My kids are good. I’ve actually got four children, but my youngest is 21 and my eldest is 30. And then I’ve got two in between there. My Eldest daughter actually lives in the USA, so she lives in Virginia, and she has two little grand babies who I just got to go visit, and that did give me a little bit of a break. I was trying to wrap my PhD, and you know I had PhD cuddle time with the 3-week-old, and the cuddle time went over.

Good for you!

So now I’m back in Australia, madly trying to submit my work.

The way I see neurodiversity, is I see that were all on a spectrum of sorts–not just autism spectrum, but all of the different various types of different brains that we have. And your focus is on autism–how many other conditions or labels, and personally I think labels are a lousy way to describe a unique human being–but how much overlap or co-morbidities or whatever you want to call it–do you see in your populations there in Australia?

I think there’s an incredible overlap, and I’ve had lots of time to think about this because I’ve been teaching for a very long time, both in mainstream classes and in special ed classes, and as I look back to my special ed class, for example, one year I had a class that had 18 boys and six girls, and of the 18 boys, eight of them had some form of–what would be labeled as ADHD or, you know possibly on the spectrum somewhere, and so I had–I was really challenged by that initially and then I had to change my complete way of teaching to facilitate those boys. So I implemented a lot more–you know, construction time, activities, I was in a grade two, so lots of hands-on–and then I brought in things like some quiet time, after out because we have recess and lunch-play in Australia, so I’ve brought in quite the time for that as well, and the difference that that made was huge. So I think there is a huge crossover. I personally think everyone is on a continuum, on a spectrum, whatever you want to call it–I really am disliking labels more and more, although I do, for the system, unfortunately we need the labels for funding and so it’s a catch-22. You need the labels because the government wont fund without labels, but once you’re labeled, then you’re forced to put children in an arsenic little box that contains them and you almost have to make their diversity more difficult than what it needs to be to fit into that label. Does that make sense? So it’s–

100%. 100%. Its a double-edged sword. Its the oxy-moron, its the conundrum. I mean what do you do?

Yeah, exactly.

And all of these kids turn into adults. So what’s going on in the employment arena down there in Australia, down under?

Its terrible. This is what was concerning me more and more and more. I was in Ohio last year and I was–I actually walked away feeling–sorry I’m not answering your question very well–I actually walked away feeling a little disheartened because I’m like, these kids in–you know, were talking now where we’ve got a group of kids now moving into adulthood, so we understand statistics, I think in the US is 1 in 68 now, in Australia its 1 in 88 children on the spectrum. Were talking about a lot of people who are moving into adulthood with–you know, minimal skills and minimal ability to be able to go into the workforce.

What’s happening in Australia in the special ed system is that they go from special ed to another special kind of organization where they are filtered into, to me, mindless types of activities, like working and sweeping the floors at McDonalds, perhaps, or, you know, working in a factory–and so you’ve got these amazing, incredible minds that are autism or are diversity, who are not really fulfilling their potential. And I think I saw a lot of similar things happening in the US. I had the privilege to meet a lovely young man in Ohio who’s in his 20s and he just couldn’t find a job because there wasn’t an employer out there who was willing to work with him because he had a lot of trouble listening to instructions and following instructions, and he was a little slower than some people, but really, clever, brilliant kid. And I think this is a huge problem. You know we don’t want all of these kids, one, wasting their potential and two, wasting away on welfare or three in prison systems, and/or on the streets. So its a very big problem.

Well, you see its my feeling, like as I wrote in the chapter in Aspertools, about harnessing the hyper-interest, is to–for us to find the interest and unique abilities in the individual. You know, I’ve interviewed on Exploring Different Brains some amazing people. Now, would I call them neurotypical? No. Do they want to be neurotypical, these individuals? No. If you look at our interview with Michael Tolleson, an autistic savant artist in Seattle, Washington who has his own gallery and who mentors non-verbal autistic–you can see a video of him if you google him online, he does masterpieces he sells for thousands of dollars in between five minutes and 35 minutes. He just does it. He’s a savant.

I interviewed another fella, Ron Sandi son, who’s memorized 10,000 scriptures and memorized a bunch of books–and finding, harnessing the hyper interests, which both of these individuals have, can apply to less unique abilities, if you will. For instance, if I have an autistic individual who loves doing the same thing over and over with attention to fine detail, yes, I’ll match him with a factory with a conveyor belt and hell have a ball doing that. And the employer will make more money because he’s not going to get turnover the employees–he might have to give a little bit of help, and this is part of the educational process which starts with embracing the fact that, look, all of our brains are different, and we have to do that.

And this is part of the huge problem though, is the education system isn’t moving fast enough to meet particular problems. For example, in Australia, as I said, we still have separation in terms of schooling, so these kids are going up through the school so we can kind of meet their particular needs to a degree, but once they get into high school or secondary school, what there dong is more about social skills rather than training them for the future, and I think I saw similar things happening in the US as well, even though, you know, it being taught in main stream schools, you’re still not focusing on what their skills and abilities are. And just recently, I don’t know if you saw this, Temple Grandin did a talk in Austin, Texas and said really similar things, you know, we’ve got to start focusing on what these kids can do rather than what they cant do, and that’s the biggest problem that I see with educators. They’re still–we have to teach these kids how to do handwriting–well what if they have dysgraphia, which is the inability to be able to write effectively, same with ADHD kids, a lot of them have dysgraphia, so why don’t we let them use a computer or tablet instead? But there’s this kind of insistence that we have to teach them certain things rather than teaching to the individual child. Its a huge problem.

Technology–you’re the cutting-edge, really, of utilization of technology, and my thought process is, is that if we embrace technology to work for us, instead of us working for the technology, and match it up well–that’s the only way that were going to bring down the cost of so much of what’s going on, and you’ve certainly been the forefront of this in your teaching and in your presentations and everything you’re doing. Why don’t you talk for a little bit to us, to our Different Brains audience, about technology?

Oh boy. Nothing drives me more crazy than going into a classroom or going into a school and schools say, “We’ve got iPads, you know, were doing a great job because we’ve purchased X amount of iPads.” And then I go into the classroom and I see the iPads sitting there–they’re still teaching in the way that we taught 50 years ago, and then as a reward at the end of the lesson they might let the child use an iPad. Or with a child who has neurodiversity, like autism, they just let them do it instead of doing the mainstream lesson. Its–they’re not using the technology effectively, so we need to match the technology to the child and, again, it comes back to that differentiation and, as you said, connecting and finding out what it is that they like doing, an then using the technology to integrate into the mainstream lesson, so that they’re able to bridge some of those gaps, those learning gaps that they have.

So most teachers don’t know that there are accessibility options on the iPad, so the iPad allows you to–there’s a whole section where you can–you know, have speak–speak-over for text for example you can make the text bigger, you can actually even lock the child into specific apps so that they’re not jumping in and out of them, and the majority of teachers that I’ve spoke to don’t actually even know about these options. So one of the things that I do in my role as a professional educator is to teach the teacher because teacher aren’t also confident with the technology. You know, they’re more confident and more set in their ways if you want to use that terminology–you know, in their old tried-and-true methods and they’re not really using the technology to the best–you know, to their best advantage. So I think its–we really need to start using technology in a much more productive, effective–the curriculum-based way. And matching the technology to the child. And teachers think that that takes a whole lot more work, and it actually really doesn’t.

I have a really popular course called the iPads In Education Course that’s available both in the US and in Australia, and once teachers take the course, because I actually get them to use the iPad to create lessons and think about the specific students, they–every single piece of feedback has been, “I’m now so much more confident using this technology,” or “I tried this with my classroom and it worked.” And, you know, its really just getting teachers to use the technology. Try it. Be more confident and then they can bring it into and introduce it to their children, to the students. So again, its another huge kind of area of concern that were really not–were still way behind in the technological field. The other thing that really concerns me about technology is that if you think about it, there really isn’t a job now that doesn’t require technology. So, you know, you go to a restaurant and they will take your order using some kind of a tablet or some form of technology–I just met a plumber the other day who used an iPad and a camera to find out where there was a block in a drain. You know, people who were delivering parcels and that kind of thing, you know they use the technology for GPS. All that kind of stuff. So technology is everywhere, and in every type of position of career options. So the fact that were not integrating technology as much as we should be is, to me, a huge concern for education as a whole.

Well I agree with you. We have to utilize it to its maximum. Our goal should be for every student and every worker and every geriatric elderly person like myself, we should be maximizing that’s persons potential for health, happiness, productivity, as much independence as they’re able to, and help them out with the parts that they can’t. Now, in Australia, do you have an aging out of the system number there, where the students get to a certain age and then there’s no programs available, or how does that work in Australia compared to over here in the USA?

I don’t know a lot about–from what I can understand, once high school ends there’s very minimal–there’s some welfare agencies that assist your teens and your early twenties. I don’t know a lot about that area to be honest with you, but in Australia, what happens is that you have to age out of school at 18. No matter–it doesn’t matter whether you’ve repeated a couple of years or whether you’re in a special school or you’re just not ready–18, you’re maxed out. So then what happens is that they go over into various places, called–there’s places called Focus, which, as I said, they do things like activities during the day, they might do some work experience type activities, and then they find jobs which are really usually menial type jobs. You know for one or two days a week. And then most of these kids stay at home with their parents so they don’t learn independent living skills. There are some really good schools that are–one of the things special schools I think are doing well is that they are working on those social skills and living skills and they have some independent place where students can go and stay for a couple of days and get used to all of that, but its a complicated kind of mess and there’s no easy way in that happening in Australia, that I can see anyway. And I apologize I don’t know enough about the US to–because I think its happening differently in each state, from what I can understand as well. So, yeah.

What do you think is the one thing, if there is one thing, that gets overlooked in the population that you serve? Is there any one thing that you think, you know what, nobody really gets this but me, and that is what?

How to go with one thing. But the one thing, the one problem I see the majority of children having in their classroom whether its a special classroom or mainstream classroom is the sensory issues and the lack of understand of sensory issues. Most–and also behavior. So looking at behavior in a different way. I just wrote a course recently about looking at behavior and then understanding from that behavior as to what is actually going on for the child. So rather than seeing the behavior as negative, you know the child’s messing up, they’re being disruptive, they’re being challenging–you know, being naughty for lack of a better word–all of those things that we actually look at the behavior as clues as to what’s going on for them. And kids on the spectrum with neurodiversity have huge–actually I have huge sensory issues as well, come to think of it. When I ask my teachers, they answers the same question, you know, too much noise really drives me crazy. So there’s these huge sensory issues and kids who do have–who are neurodiverse, sorry–that can cause fight-or-flight responses, and so we’ve got to look at behavior in a different way.

Look at it as the clue to what is the problem, and then solve the problem, and then when have a much calmer student and a much calmer classroom. But I feel like Id bang my head against a brick wall, and its not just schools–as parents as well, and even the whole arena, constantly talking about the need to identify sensory issues in students, because I think its a huge factor. If we can overcome behavior issues, then we can get to the real them. We can figure it out what it is they’re good at. We can then get them working successfully and confidently and I also say success forgets success, you know, its a cycle. We build into them confidence; they have moments of success, they’re more likely to take risks and then they have more confidence and then they have more moments of success. And so it kind of goes in this cycle and its really important that we do that for these kids because these kids constantly have experiences of failure, you know, they’re not doing it right, their handwriting is bad or they’re painting badly or–you know, so they’re always coming across failure rather than success, but if we turned it around and understood them more and understood why they’re behaving the way they are and understood that they simply cant write perfectly because their brains not wired that way, and then we would see a completely different student. So yeah that’s my one thing, in a very big nutshell.

Karina, when people want to find out more about you, how do they get ahold of you? How do they find out more about what you and your organizations are doing?

So you can email me of course, KarinaBarley@gmail.com and then, also the–my website is–I have two: ProjectAutismAustralia and ProjectAutismUSA. They’re both kind of linked together. So that really talks about me and my thoughts on autism and I’ve sort of present a lot of the ideas that we talk about here and then I also work for two companies, which is Teacher Training Australia, if you happen to be an educator in Australia, and also digital learning train which is, you can go to digitallearningtrain.com and here you will see a lot of my presentations and a lot of my work there, and if you’re–so the courses that I do write are accredited so when–as I said, were looking to get more universities onboard, so teachers can take the courses and gain some of their credit that they need for their Masters or just for their teaching accreditation. So yeah, you can find me there or you can simply just google me, Karina Barley and you will find me on Twitter and LinkedIn, Facebook of course. So I’m pretty much everywhere.

Now for the parents who might be watching this, who have an autistic child, what’s one takeaway piece of advice you might give them?

That’s a big question. One of the things that I see when you’ve talked about it before, your parents parent from a whole range of arenas or a whole range of emotions, and one of the biggest things I see is that when you get a diagnosis and its one that is autism, a lot of parents go through, you know, grief and pain and even shame–some people–you know, what happens is they start parenting from that place, so they are constantly trying to make up for their kids and some of your most, I think, enthusiastic parents are parents of children with diversity, which I love by the way, I think its fantastic that they’re passionate and want to make a difference, but I think we have to realize that these kids, they might be neurodiverse or have not a neurotypical brain, if you want to call it that, but they’re still children and so you still need to parent as a parent, and not from guilt and shame and all of those negative emotions. And so and then also, while you can listen to experts, at the end of the day, I think its Tony Attwood, I don’t know you’ve heard of him, professor Tony Attwood in Australia, he said, “Parents have a PhD in their child.” Which really spoke to me, because they do. Especially when you’re being told that your child has a problem, parents mostly will go out and research and look at every single possible thing they can because they want to do–they want to do what they can to fix their child, and I think that’s fantastic and we need to listen and collaborate with parents as educators, and parents also need to collaborate with the parents as well, so it needs to be a really good partnership. But one of the things I see is the sadness, and I–yes, I get its hard, because a lot of parents out there and its tough and they’ve got to come against systems and come against a whole range of behaviors and issues and problems and often medical problems as well, but if we can parent from a different place and a different attitude, then usually parents do start to rise above, like you talked about your own daughter. You know, you believe in our child and believe that they’re capable of doing more, then its most likely that your child will do more. So that’s, in as big as a nutshell as I can give you, my advice.

That was a wonderful nutshell. Now you’re a little bit nuts.

I have to be, don’t I?

That’s why the most important Aspertools in the Aspertools book is unconditional love and that covers a lot of bases. And you’ve covered a lot of bases today, really. I thank you so much.

Thank you.

And we’ve been talking with Karina Barley from down in Australia where she is doing so much in so many different ways, she’s got project autism Australia, project autism USA, she’s a consultant, she’s an educator, she goes to Singapore, she goes to the United States, she goes all over the world and she’s doing so much for so many. You can find her at ProjectAutismUSA.com and you can find her at the other places she mentioned earlier, and I just wanted to thank you, Karina, for spending time with u, and we here at different brains.com are glad to help you achieve your goals and spread the word as much as we can. So keep up the good work.

Thank you. Thank you for having me. I really appreciate it.

We’ve been talking with Karina Barley, the founder of Project Autism Australia and Project Autism USA.

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This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.

Harold Reitman, M.D.

Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.

Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).

Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).

This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.

In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.

http://differentbrains.com/about-us-2/