Raising the Autistic in Australia, with Sarah Collins | EXPLORING DIFFERENT BRAINS Episode 25
In this episode, Harold Reitman, M.D. speaks with Sarah collins, founder of Autism CAER. Sarah discusses autism awareness in her home of Australia, raising three children on the autism spectrum, and the work she does creating inclusive educational strategies.
For more about Sarah and Autism CAER, visit:
www.AutismCAER.org
facebook.com/AutismCAER
twitter.com/autism_caer
32 Second Preview:
To listen or download the podcast version of this episode, see the embedded player below.
Or look for us on your favorite podcast provider:
iTunes | Stitcher | SoundCloud
[expand title=”View Full Transcript”]
HACKIE REITMAN, M.D. (HR):
Hello and welcome to another edition of Exploring Different Brains, I’m Dr. Hackie Reitman and today we are talking to someone all the way from Australia. How’s that for a Jersey City/Australian accent; it’s Sarah Collins who’s the founder of Autism CAER and she’s a mom of four children, three of whom have autism. Welcome to the show, Sarah!
SARAH COLLINS (SC):
Thank you very much.
HR:
Introduce yourself to our audience Sarah if you could.
SC:
Ok so I’ve got a background in education and business and was working as an instructional designer when I had my first child. Right from the start there were a few difficulties that we experienced and as he got older, it became more apparent that there was something else going on. So the past few years we got a diagnosis and we now have four children. Our fourth child is actually in the process of getting a diagnosis. Also my oldest is now eight. I have a six-year-old, a five-year-old, and the youngest is two, so it’s fairly hectic in our household
HR:
I can well imagine and what was your introduction into the world of neurodiversity?
SC:
We’ve got a few extended family members who are on the autism spectrum, so they introduced me to neurodiversity. It probably wasn’t until I had children that were diagnosed, and I got to understand them better, that I actually got to better understand neurodiversity, so that’s been how I learned about it.
HR:
So you’re networking in Australia with leaders in the field to try to get the community going. Tell me how that’s evolved?
SC:
Well the thing that I noticed was as I went to parents’ support networks and meetings, a lot of the issues that we were experiencing, many families were experiencing when we went out into the community where it be sporting events or churches or whatever it was, we needed to explain to people what autism was. When we spoke to people and said look our children have autism, people would generally say, oh yes autism ok that’s good I’m sure they will be fine, but didn’t actually ask any further questions. But the thing that always stood out to me with autism is a lot of people have heard the term “autism” but they may not have a deeper understanding, that it is a spectrum and changes from individual to individual and you know every brain is different I guess, so just because somebody has a diagnosis doesn’t mean that people understand how to care for somebody, how to make sure that they are included, and so further questions need to be asked, so we weren’t the only family that were experiencing this and it struck me that every family seems to be almost teaching the people that they came across.
HR:
You had to develop leadership there in Australia and how did you go about that just going around talking to people and meeting people?
SC:
For the past number of years three years i think we are up to now I’ve been doing training for an organization called FSG Australia and they provide care for people whether it be respite or if individuals need to be relinquished from families they provide homes with care in there so obviously the range of needs that they come across is great so they get trainers in to talk about the various different needs. So I would come in and train their parents on autism and to bring a broader understanding.
HR:
Yeah and how’s the reception been there in Australia, people been friendly about this?
SC:
Yea really positive.
SC:
Oh that’s great!
SC:
Generally, people want to be able to embrace everyone but sometimes, yeah there is uncertainty about how to do that
HR:
Well yeah people are nervous when they are ignorant when I say ignorant I mean like I myself was when my daughter who had 23 brain tumors and two major brain surgeries but was earning her discreet mathematics degree at Georgia Tech I knew she has some ADHD and some memory deficits and she’s maybe quote a little bit different” but you know she’s getting along and when she went to intern at Cumberland Academy of Georgia the owner of the school met her for 10 minutes and said you know your daughter Rebecca had Asperger’s also, and I said what’s that? Well it’s on the spectrum of autism, and I said what’s that? So I think it’s on us to educate people so that they’re more comfortable with it.
SC:
Yeah my desire is to be able to work more with business so that businesses understand more about autism.
HR:
well we can also show businesses how it is to their advantage to embrace neurodiversity and they will get some very loyal workers who maybe need a little bit of help but will really focus and do a good job.
SC:
That’s right we all have our strengths and weaknesses yeah that’s right.
HR:
How does the educational system down in Australia approach things?
SC:
Yeah so in Australia we do have what’s special schools they call them they are more aimed to people with intellectual impairment generally speaking they are looking at an inclusion into our schools so they are in the classrooms and they have additional support there through Special Ed units and they work with the students to help incorporate everyone in the classroom.
HR:
So it’s more in mainstreaming instead of having separate
SC:
Yea that’s it.
HR:
Tell us a little bit about your children.
SC:
Ok so Joshua, he is my eldest, he’s 8, he is incredibly imaginative and he loves building things. He likes to know how things work, he loves his Minecraft and he’s into playing Space and Zombies at the moment so yeah if anyone ever meets him and doesn’t know what to talk, about he can talk for hours on those things.
HR:
So we have to figure out how to harness those interests and figure out how he can make a living at it and he will never work a day in his life.
SC:
Yes, that’s right so yea i think he would make an excellent engineer or builder or something along these lines.
HR:
I think we in society tend to spend so much time trying to say why don’t you do what everyone else is doing instead of developing what they love doing.
SC:
Yea that’s right yea and certainly it doesn’t hurt to think outside the box. Erin is my next oldest and she’s 6 and she’s incredibly artistic and loves anything crafty she can do that for hours she’s a very kind hearted little girl she loves people and loves looking out for others.
HR:
She likes art?
SC:
Yes, art yes.
HR:
You know we interviewed if you want to check it out sometime at Different Brains, Michael Tolleson we did an interview with.
SC:
I saw that one.
HR:
Oh man he is really something and it just goes to show I mean he loves art and he’s so good but he’s not gonna do it the way everyone else does nor should he be required to.
SC:
It was a request for a long time that at bedtime I teach my daughter to write because she would love to write books and illustrate them, probably not at bedtime.
HR:
Maybe she can illustrate one I’m working on we can work something out with this modern technology it doesn’t matter if she’s in Australia. Is it true the water goes the other way around in the toilet there, I mean what’s the story? Our audience wants to know which way does it go when you flush the toilet? They do have toilets in Australia?
SC:
Oh we do and they now have them inside the houses.
HR:
I gotta tell you you know I played rugby for 11 years up in Boston and the Australian teams used to just come over and whoop us so bad it wasn’t even a contest. I’m telling you. So that’s Erin and Josh and now?
SC:
Now there’s Kaylee, yeah Kaylee is quite artistic too, she likes her drawing and writing so she’s 5 so she’s a little bit younger but
the youngest is Zoey. Zoey is 2.
HR:
What great names! Those are great names! Sounds like a novel!
SC:
Yes, so Zoey is 2 and she’s just a ball of energy. She’s a very happy girl who loves animals, loves singing. She doesn’t talk very much. She probably has about 5 words in her repertoire but for not being able to speak much, she certainly does communicate well. She finds her ways.
HR:
You have a background in instructional design yourself?
SC:
Yes
HR:
Would you say that in that field you’ve experienced some people whose brains are rather different in that area?
SC:
Yea as an instructional designer I would work with teachers from all sorts of different subject areas, I would work with multimedia developers with graphic designers and sort of bring all that expertise together to be able to develop online resources, courses, some print based resources and definitely yea you come across a big range of personalities and different abilities so yeah most definitely.
HR:
And what does your husband do?
SC:
He is a Phys. Ed. teacher
HR:
So that’s good you live right across from the park, everybody’s in good shape, it’s a healthy lifestyle.
SC:
Yeah well that was the thing that drew him to the house he was like yea the house is not that great but check out the park
HR:
Now what does CAER stand for and how do you pronounce it? Care? Autism CAER?
SC:
Yea Autism CAER stands for Community Acceptance Education and Resources. I wanted to bring an acceptance to educate people about what autism is and how we can work together to be more inclusive with people regardless of what their difficulties are, but specifically I guess around autism and some other differences that some people have and then to be able to provide training were training is required and resources as well.
HR:
What would you say in Australia is the biggest limiting factor for those of us who’s brains are somewhat different because I know that you have probably limited knowledge of how it is here in America and I have very limited knowledge of what’s going on in Australia?
SC:
Yea at the moment I mean most people have heard of autism in Australia. There is probably no great depth of understanding it’s funny how many times I take my children somewhere or talking to somebody and they’re like, “oh my brother in law’s cousin has a child with autism so i know what you are talking about” is yeah maybe an understanding of how diverse the spectrum can be.
HR:
Where do you feel that people are really missing the boat about autism if you do feel they are in other words what’s one thing that you think that maybe the average person just doesn’t get that you get that they don’t get?
SC:
I guess for a number of people you know it’s a looking at things like movies like “Rain Man” and seeing those sorts of portrayals of what an autistic person looks like and they see you know some happy kids running around they seem happy a bit manic but you know, happy and want to engage with people and want to interact. There is this disconnect you know how can this person have the same diagnosis is what I’ve seen in this movie. So not actually understanding that there is a lot of diversity on that spectrum you know each person is an individual even looking at neurotypical people as you said before you know there is a lot of diversity and we all have our strength and our weaknesses, you know it’s always relationships first, you know who is this person what kind of struggles do they have yea and how can we support them?
HR:
I think that is very well said. When you’ve met one autistic person you’ve met one autistic person and so that stereotyping and labeling for anything it’s seductive because it makes things easy and certain times you need labels but I think it’s a lousy way to describe a human being, you know a unique human being. How do you see the employment issues in Australia for people who brains are a bit different?
SC:
For some people they really struggle to be able to hold down a job where you know the expectation may be that you need to have strength in so many different areas and you need to be able to have strength in those social areas, and I think because you know for some people, but that is a very difficult area and I’ve heard a lot of people have had struggles at work due to just some of those nuances.
HR:
We just interviewed a wonderful woman from Canada, Tarita Davenock who has an all-inclusive type of travel, “Travel for All.” How is the travel industry down in Australia relative to people with disabilities whether they be intellectual or physical?
SC:
To be honest with four small children we don’t do a lot of travel.
HR:
Well said
SC:
We have gone on holiday away from our home we made the mistake of not double checking that the doors had key locks. we found that the back door didn’t have a key lock on it so it was just locked from the inside and so we spent our whole two-week holiday listening out for children walking out the back door. It wasn’t much of a holiday
HR:
If people want to get in touch with you Sarah, how do they get in touch with you?
SC:
The best way is probably either my website which is www.autismcaer.org i also have a Facebook page, Autism CAER, also on Pinterest and Skype and twitter but i don’t tweet too much
HR:
What is the main thing you tell employers when you go in there to speak to employers about neurodiversity and autism in particular?
SC:
Autism is a fantastic thing like I look at my kids and the people I met, and part of what makes them so wonderful is some of the things that can be attributed to autism you know they have got fantastic strengths. You know I just am baffled by how focused some people can be with some of the details that they can remember, you know if it’s an area of interest just how much of information you know, how much time they can spend in that area and some of those strengths can really really be beneficial to businesses. It can be such a beneficial thing to have people that are neurodiverse.
HR:
When you create an instructional program, what are some of the principles you employ you know in your instructional design because you’re professional is in that, your background is in that and to people like myself who are not professional educational designers what kind of tips can you give us?
SC:
For all of us regardless of who we are we all learn differently, so some people are auditory learners some people learn by doing some learn by hearing. For a lot of people, it’s the visuals. Seeing things that can be helpful. When I’m developing resources i always make sure that my resources cover all those different learning styles so that you know people who are naturally audible learners don’t get lost in heaps of words, just making sure all bases are covered and you have a resource that will actually help lots of people.
HR:
You mentioned some people are auditory some people are visual and that’s why this very interview will of course you watch it in video you can watch it with or without captions, you can listen to it on a podcast you can read it in a transcript you can look at it or feel it or sense it however your particular brain works i think that’s how we have to approach everything, everyone’s brain works a little differently, it’s not one size fits all.
SC:
Yeah.
HR:
Well it’s been such a pleasure meeting you and talking with you and as you said you don’t travel much with four kids, but if you get over here to Fort Lauderdale, Florida say hello!
SC:
Oh definitely, most definitely!
HR:
Well thank you so much. Let’s tell or audience once more how they can get in touch with you and see the great things you are doing at Autism CAER.
SC:
Ok so our website is www.autismcaer.org and we have also got a Facebook page and Twitter feed and all that sort of stuff that you can be directed from our site.
HR:
And we are hoping perhaps you can a do a blog for us at different brains and different brains certainly would love to mainstream the work you’re doing and i think its miraculous that we’re able to talk and meet and you are all the way in Australia.
SC:
That’s right.
HR:
I don’t think about it as if I’m all the way in America because we know it’s Australia is the one that’s far away.
SC:
That’s right!
HR:
So great to meet you keep up the good work you do!
SC:
Thank you so much for your time!
HR:
We’ve had the great privilege today of talking to our friend in Australia Sarah Collins www.autismcaer.org.
[/expand]
This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.
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.
