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Matt George (00:00:01):

Today's episode of the Sensory Friendly Solutions podcast on the Unsettled Media Podcast Network is

brought to you by Sensory Friendly solutions. Discover Sensory Friendly Solutions for daily life. To learn

more head to sensoryfriendly.net. Unsettled.


Matt George (00:00:24):

On the Sensory Friendly Solutions podcast this week is Maureen Bennie. Maureen is the founder of the

Autism Awareness Centre. She's also an author, she's co-authored books, written over 200 articles and

book reviews that have appeared in magazines, newsletters, and on websites throughout North America

and the UK. Maureen created the Autism Awareness Centre in 2003 to address what she saw as a gap in

support, information, resources and advocacy for those struggling with autism spectrum disorders. For

Maureen, education and knowledge brings positive change to the lives of those affected by autism and

autism spectrum disorders. Without further ado, we give you Maureen Bennie. Maureen, welcome to

the Sensory Friendly Solutions podcast.


Maureen Bennie (00:01:23):

Thank you so much for having me today. I'm really honored to be here and honored to have the invite.


Matt George (00:01:28):

You told me before we started recording, this is your first podcast, is that correct?


Maureen Bennie (00:01:33):

It is indeed. So I feel a little bit nervous today. But hopefully I can share my wealth of information on this

topic. And yeah, let my thoughts and feelings be known around all of these good things around autism

and sensory issues.


Matt George (00:01:49):

Absolutely. And that's why I was talking to someone this morning who has a podcast production

company out of Halifax. And we talked about the really interesting applications of a podcast. And the

beautiful thing about it is we get to hear from experts like you about your personal experience with

these topics. And so with that, I want to dive right in, we got to do a COVID check-in. It's been a weird

year. Tell us a little bit about how you are personally and what's been going on. I mean, it's a strange

time.


Maureen Bennie (00:02:19):

So for what's happened with COVID-19 for Autism Awareness Centre is that we have mainly been a

conference provider and training provider, small group trainings. So when the pandemic was declared

on March 11th, and then that shutdown started to happen on that weekend, I lost both of my major

conferences in Ottawa that was scheduled on April 2nd and third in Ottawa. And then two weeks later, I

had one in Halifax and I had to cancel that as well. So rolling into the fall season, I normally have three

conferences this fall, Saskatoon, Winnipeg and Calgary, I had to cancel all of those.


Matt George (00:03:00):

Wow.


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Maureen Bennie (00:03:00):

And now I'm looking now going into 2021 pretty much letting everything that I had booked in place go

as well, because we have to work a year ahead to get these incredible international speakers from

Europe and United States. And of course with the travel restrictions going on, we can't get them here.

We have problems getting medical insurance, of course for travel. And then there's just the whole worry

of bringing people together. So that's been a huge alteration in the business as well as not having that

in-person connection anymore. Now we've jumped online with webinars, and I'm trying to do two of

those a month. And I started in early May. And I was brand new to webinars.


Maureen Bennie (00:03:46):

But the funny thing is, is that we actually had that in my business plan for the past two years that I was

going to jump online and start doing webinars. But your fear level especially I'm a woman now in my mid

50s, and it's hard to start something new, that you don't know anything about. And it was hard to jump

in at first. Once I got going, I was okay. But I still remember doing my first trial recording and watching it

and crying. And I was over because I was just like, oh. I am so used to speaking in front of audiences. I'm

a person that jumps off the stage and starts mingling in the audience. I like to put a little comedy in

there. And it's so difficult to do when you're just in a room by yourself and you're staring at that little

webcam and you just think, "Am I holding your attention? Is this sounding okay?"


Maureen Bennie (00:04:45):

And then also that inability when you're doing this type of format, even though people can type in their

questions and whatnot, it's not the same as you can catch somebody's eye in the audience and say, "Oh,

I can see that person is puzzled. They have a puzzled look on their face." Or, "This person seems to be

getting upset. I need to spend some time with them." So there's not that one-on-one or also group

interaction and group dynamic. But it's the next best thing. And I say, thankfully, we've got this

technology piece.


Maureen Bennie (00:05:19):

Now on the other side of things, I have two children with autism, my son Mark is 23. And my daughter

Julia is 21. So I have what's called a family managed services program, meaning the family, i.e, myself, I

manage the entire program for them, all of their activities. And they were having very rich and full lives

out in the community with a nice balance of work, some additional educational opportunities,

recreation and leisure opportunities. And of course, all of that is basically gone now. And I have my kids

here, all the time. And there's a computer next to me in my office, which my daughter insists on sitting

on and she wants to be in here when I'm doing everything, but I don't allow her in here for podcasts,

webinars and that sort of thing. Plus, I don't always like her hearing the different topics that I'm talking

about, she can be very sensitive about it, or she can say that applies to me. And then she starts

perseverating on it. So yeah, it's been hard.


Maureen Bennie (00:06:27):

We still have our staff, we have an aid for each child, and we've managed to retain them. But again, it's

what do you do? I used to even send them out to do various errands to make my life a little bit easier

and now I'm reluctant to do that because I also don't want to be putting my staff at unnecessary risks as

well out in the community. So yeah, life has been very different.


Maureen Bennie (00:06:51):


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The other thing I did was I really increased my writing when COVID-19 first happened, because Autism

Awareness Centre is a very global international website, I knew people would be looking to us for

guidance. So I began to write a blog that was COVID-19 related every single week on a different topic. So

I covered increased screen time, sensory issues around wearing personal protective equipment. And as

different rules came in, for example, when mandatory mask rules came in, in different parts of the

world, then I offered resources on that, how do you get this population to be able to use things like

hand sanitizer, that's cold and then it evaporates, and you get that cool feeling. And a lot of our folks

cannot tolerate these different types of sensory issues around these measures.


Maureen Bennie (00:07:47):

And then also helping people through loss of routine. So for example, all of a sudden, now you had kids

at home all day, like my own kids, and how do we still keep that even keel because I'm on another

project right now on family violence and the increase in family violence in particular that's happened

around our community. And this is a real reality. And a lot of it has to do with, again, the predictability

and the routine being interrupted, but also everybody living together in a small enclosed space. And

even if you're fortunate, and you're in a larger house, when you're together all the time, those walls

really start to close them. So I tried to focus a lot of my writing around physical activity, mental health

issues, calming strategies, anything that I thought would be helpful for this population. So that's another

thing that I did.


Maureen Bennie (00:08:50):

And then I also jumped into eBooks. So I had started writing one eBook a month back in January, and I

just thought I better keep that going. So the eBooks, each one focuses on a different topic. For example,

toileting issues. I've done one on life skills, adulthood, sexuality and relationships, feeding issues,

education. I did one, yeah, education and I can't even remember. I have eight of them out there. And

they're-


Matt George (00:09:21):

Wow, you're prolific.


Maureen Bennie (00:09:24):

Yes. And they're less than a latte. They're $3.90 and those are being downloaded all over the world,

which is great. So it's an expensive way to get information that's very focused on one topic. And all of

the little chapters are short articles, between 800 and 1200 words on a different topic, like around

adulthood for example.


Matt George (00:09:50):

There are so many things that we're going to be plugging on this podcast and in our show notes to drive

traffic to those things, the blog, the webinar, the eBooks, etc. But let's really dig in to some of those

aspects. In the first episode of the podcast, we talked to a pediatrician who works on the social

determinants of health, named Dr. Sarah Gander. And she brought up the same point that you did with

this routine disruption. So she said, "The government has been good about keeping us safe and walking

us through this for the most part. But things being introduced, like alternative school schedule," so

you're doing one thing one day, and one thing the other, "we as a general population, maybe

underrating the effect that that has on the sensory friendly community or the neuro diverse


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community." Was that something that became apparent to you really quickly, because of your personal

circumstance and professional circumstance?


Maureen Bennie (00:10:45):

Absolutely. And you know what? It's the first thing I jumped into personally in my life. I said to my

husband, "We have got to keep all of these routines as similar as we possibly can." So even though,

especially in when the lockdown first happened, and we had two weeks of limbo, where we didn't really

know what to do, I still had the kids getting up at the same time, my daughter gets up at 8:00 in the

morning, my son gets up at 9:00. We had them dressed by 9:30, 10:00. We tried to do something

physical. And at that time, of course, we were still in winter temperatures and that was hard. But what

we did was, my kids are both really, they love WeFit. And so we got them going on WeFit routines.


Maureen Bennie (00:11:33):

And it was interesting, because I thought my daughter in particular was going to do a lot better. And

what she started describing very early on into the pandemic was she said, "I feel my chest rising." So I

knew what she was trying to describe was anxiety, but she didn't have that word for anxiety. And so I

said, "Okay, you're describing anxiety, let's figure out what we can do." So she came up with, "I think I

can do WeFit and that will help me." Great. So we went over to the WeFit and then she started to get

panicked. She said, "I don't know how long to do it for. I don't know what I should be doing."


Maureen Bennie (00:12:13):

So we figured out, "Okay, let's break it down. What activities are you going to do on WeFit?" And I said,

"Why don't we start with 20 minutes?" And she said, "Well, I know how to set a timer on my iPhone." I

said, "Well, great, let's use your iPhone then." And she put that up there where she could see it, and

then that became her go-to thing. And eventually, she was good enough at identifying those internal

signals that were coming forth, and was able then to jump off the computer and then go and do the

WeFit. Because Julia is very driven by screen time. And it's really hard to get her off of that. Whereas my

son has always had more diverse interests, even though he's the more intellectually disabled and more

profoundly affected by autism, he's always had these very big routines, I would almost call them. On a

Monday he meditates from 4:00 to 5:00.


Matt George (00:13:10):

Wow.


Maureen Bennie (00:13:10):

Yeah. He has a coloring period in there where he gets out a coloring book and he colors for 30 minutes

to classical music. He had a Thai massage therapist and yoga therapist coming in once a week and she

stopped. But he had the sheet with all of the poses on it. So he started to take himself through that

routine at exactly the same time that he always did it, which was at 4:15 on a Wednesday. Now I would

suggest, "Why don't you do some yoga moves on other days as well?" No, he couldn't get his mind

around that, he had to stick with what that routine was.


Maureen Bennie (00:13:45):

So he also reads aloud to himself about three hours a day, an adult nonfiction book. So he was looking at

that. The library closed as well, and that was a hard one for us because I like to get Mark different


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documentary DVDs out of the library every week. And I know you can stream things but he is very

tactile. He's got to have the case, he's got to open it up, put that physical DVD in the player-


Matt George (00:14:20):

Interesting.


Maureen Bennie (00:14:20):

... and then if there's a little booklet with it, he likes to be holding that. He likes to have-


Matt George (00:14:24):

So streaming doesn't have the same effect sensory-wise for your son?


Maureen Bennie (00:14:28):

Yeah, exactly. So yeah, that was the biggest thing, was just jumping into those routines. But then the

next thing I really started teaching them about was the hand washing and the hand sanitizing. Because I

knew that was going to be a really big one. But a lot of parents just think, "Oh, well you tell them to

wash their hands." No, you have to tell them exactly when to wash their hands. So if we'd gone out for a

bike ride, it was about coming back in and doing that immediately before they did anything else.


Maureen Bennie (00:14:59):

So they've been really good and Mark had to start wearing masks almost right away because he's in

specialist medical clinics. So that was a requirement right away. And that just became part of his daily

routine. So that's, I think, been the biggest thing, and also the increased screen time that a lot of our

folks have had. And with schooling going to online, a lot of teachers did not really know how do we still

reach this population, because the other thing is, a lot of our population has aid support in the

classroom. Now you've lost that aide support. So mom and dad are expected to take that role at home.

And that is a very difficult thing to do, particularly if you're schooling other neurotypical children.


Maureen Bennie (00:15:49):

And I don't know about other parents out there, but my children don't tolerate a lot of help from me.

It's like, "Mom get away." They'll tolerate it from a support worker, they're good with that, but not...

Well, I was like that too when I was in high school. If my mother looked over my shoulder I was like, "Get

away."


Matt George (00:16:07):

Sure.


Maureen Bennie (00:16:08):

So yeah, lots of changes happen, for sure.


Matt George (00:16:12):

I know, lots of our listeners are looking for strategies to improve the quality of everyday life, especially

given what we're going through right now. And I've written down so many things already. When you

think about the habit and the routine change, is your counsel just to build that consistency and stick to it


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and absolutely be consistent with it? You also mentioned the interesting need to find alternatives. I

mean, that could be a challenge for parents as well.


Maureen Bennie (00:16:41):

The consistency is key. And that's one of the things too, that I talked about when I did my webinar on

the new At Home World with COVID-19, was if you need to make any changes in the routine, and that

was going to happen, no matter what you did, you were going to have to have some alteration, that you

got it going as quickly as possible and you stuck with it. If you are changing things every day, it just

becomes chaotic, but it does for you as well, or I mean for neurotypical people it does as well. You really

need to have that routine, that purpose, those goals that drive. And even if the goal is small, you've got

to have something measurable at the end of the day to just feel like you did something, that you

accomplished something. And that is one thing I really did advise to families at home was jumping in as

fast as you could and keeping that consistency. One of the things we did in our house a year prior to

COVID-19, I got into the whole Marie Kondo thing, the Art of-


Matt George (00:17:53):

Sure.


Maureen Bennie (00:17:53):

... Tidying Up on Netflix.


Matt George (00:17:54):

Sure.


Maureen Bennie (00:17:54):

Everyone was talking about it and I'm like, "Who is this Marie Kondo?"


Matt George (00:17:57):

Are you watching the new one called The Home Edit on Netflix?


Maureen Bennie (00:18:01):

No.


Matt George (00:18:02):

Oh, you're going to be obsessed with it.


Maureen Bennie (00:18:03):

Oh, okay. I'm looking forward to that. But I was watching Marie Kondo, and the first few episodes, I

thought, "Oh my gosh, this has an amazing application to our neuro diverse community." Because it

really had a sense of visual order categorical thinking and systematic thinking, which is the neurology in

autism, is thinking in categories, groups systems. So the first thing I did is I emptied the kids' drawers,

and you fold things up almost like a little packet, and you stand like a T-shirt on end.


Maureen Bennie (00:18:42):


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So what was great about it is that you could open the drawer then and you could see every single thing

that was in it. And it gave my children a higher level of independence, because I could say grab yourself

a gray shirt. So they could open that drawer and see that gray shirt or they could see that pair of jeans.

Whereas before, things were in a stack and that requires a lot more motor planning and skill to be able

to move through a stock of clothes because you have to grab the top layers, you have to flip them up-


Matt George (00:19:15):

Sure.


Maureen Bennie (00:19:15):

... you have to look underneath, you have to stick your other hand in and then you have to pull that item

out. So I Marie Kondoed pretty much every area of the house and then my daughter has an at home

baking program. So I made sure that all of the baking things were in these two shelves in one area. And

then we alphabetized all of the spices so they're in units where you pull out A through N, is in one tray,

and then the rest of the alphabet on the other side. So it just made again, for more independence. So

when I think about setting up the way we've set up our home, it's about how do we give our kids an

independence, but the ability to know where to find things?


Maureen Bennie (00:20:05):

So we have a massive book collection, there's shelves all over the place, built-ins. And we took every

single book off the shelf and then we categorized it by like celebrity biography, ocean liners, British

history, the royal family. And so when Mark wants to get a topic for himself, he can do that. So one of

the things we took a little drive, I think it was back in April, just to get out of the house and-


Matt George (00:20:33):

Sure.


Maureen Bennie (00:20:33):

... see something different. Yeah. And I stopped at a honey place, it's a small little place, and I just went

in by myself to get honey. But Mark, he's been in there before and he knows that they have honeybees

behind a glass, so you can see them making their honeycomb and everything. So a few days later, he

went to the nature section, and he pulled a book off the shelf on bees and he said, like the trip. And I

thought, "Oh, my gosh, he's made that connection." But he knew where to find that book on his own, he

did not need my help. So particularly now because my kids are in their 20s, they don't want mom always

showing them where things are. So we try to get that level of independence.


Maureen Bennie (00:21:18):

But the other big thing that we've done too, and this took me a long time to get there is there were

certain things I had to accept that there was going to be some skills that my children were never going

to master no matter how old they were or they would not get to the level of other people in their age

bracket for certain things. Like my son is very dyspraxiac, he has a lot of trouble coordinating his

movements, for example. So I'll give you an example that for years we tried to teach the children how to

ride bikes. We hired an occupational therapist, we had one-on-one therapists working, we were trying

ourselves, it just wasn't going to work.


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Maureen Bennie (00:22:01):

And then it dawned on me too, that even if they were able to master riding that bike, were they ever

going to be able to master the quick thinking that is involved with processing rules and information

that's going to fly at them extremely fast? So for example, you're out on a bike path, there's a walker,

and you ring the bell, and they don't move because you don't realize they have earbuds and then they

can't hear your bell. So my kids would say they've run the bell and they'd probably run into the person

because the rule is you ring the bell and then the person is supposed to move. Or what happens when

someone is walking on the wrong side of the path, or what happens when you're on the bike path, but

the walkers have come over onto the bike path rather than stay on the walking path, or a dog runs in

front?


Maureen Bennie (00:22:52):

So I knew that our children would never have this quick thinking mechanism of being able to make snap

safety decisions. But I still wanted them to have the joy and experience of being out on a bike. So we

came up with the idea of we bought the tandem bikes, we are constantly stopped on bike rides. People

are like, "Did you rent those bikes?" They are such a huge topic of conversation, because people are

fascinated by seeing these two tandem bikes together. So my husband rides with Mark and I ride-


Matt George (00:23:28):

That's excellent.


Maureen Bennie (00:23:29):

... with Julia. But again, they are pedaling, they're getting the exercises, they're getting the joy of riding

that bike without having all of these other safety layers involved. So it's still giving them the experience,

but with an adaptation. So five years ago, when we were renovating our kitchen, I said to my husband,

Ron, "We've really got to make this an autism friendly kitchen because we're going to be moving them

into adulthood, we want them to be independent." So for example, we got an induction stove because

when you take a pot off of that, even if you forget to turn the burner off, the burner's not on. It has to

make contact with that pot. The burner is almost instantly cool as soon as you take a pot off of there.


Maureen Bennie (00:24:17):

If it's on high and the water's boiling and you turn it down to medium, it immediately goes down to

medium. It's not this slow, gradual going down to that temperature. We put a tap in that is a touch tap.

And it's got a light at the bottom that says it'll be blue for cold then it goes pink for warm and then it

goes red for hot because again, because my children are delayed in getting that sensory information to

the brain, they would stick their hand under there way too long, it would be hot, and it would be too

late. They would be burned before they got the message to pull their hand away.


Maureen Bennie (00:24:57):

So another problem they've always had, they never know when they're thirsty. So we put the fridge in

with the water and the ice, and that's been pretty good. They're still not great at going and getting those

things on their own. And that brings me to my whole point around interoceptive awareness, which is

something-


Matt George (00:25:16):


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Yes.


Maureen Bennie (00:25:17):

... yeah, I discovered six years ago through starting to have conversations with the occupational

therapist, Kelly Mahler. And-


Matt George (00:25:25):

And some of your readings Maureen, you call this the eighth sense.


Maureen Bennie (00:25:29):

Yes. So-


Matt George (00:25:31):

Right. Let's dig into it.


Maureen Bennie (00:25:32):

Sorry, go ahead.


Matt George (00:25:33):

No, let's dig into it. That's wonderful. Let's into it, the eighth sense.


Maureen Bennie (00:25:35):

Okay, yeah. So yeah, so Kelly Mahler, started talking about this eighth sense, where this is the sense that

helps you feel if you're too hot or too cold, pain levels, if you're hungry, if you're thirsty. And when we

started talking about this, it was like a light bulb came on. I said, "Kelly, this is why my children never tell

me that they're hungry. They never tell me that they're thirsty." Both have had different types of

toileting issues for years. And this is still ongoing. Particularly Julia will hold her bladder until she's ready

to burst and she almost barely makes it to the toilet. So she's obviously not getting that signal early on

that her bladder is full, it has to go to this bursting level. The pain thing, when my daughter was two, she

had an ear infection, I mean, most kids are screaming when they have an ear in-


Matt George (00:26:33):

Sure.


Maureen Bennie (00:26:34):

All she did was pull her hair out bald around the area. But I still had no idea. I thought, is she-


Matt George (00:26:42):

Wow.


Maureen Bennie (00:26:42):

And she had just gotten her autism diagnosed at 23 months, so she was just over two. And it wasn't until

that infection burst and everything was running out of the ear, I said, "Oh my God, she has had an ear

infection."


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Matt George (00:26:58):

Wow.


Maureen Bennie (00:26:58):

But never complained about it. So I've worked for years to try to get Mark and Julia to feel these

different kinds of sensations and identify them. But again, there's just going to be some aspects of their

impairment level where that is never going to come. And I've met people even in England, for example,

through my work in the UK, where we're talking about adults in their 40s with very high IQs, they seem

very capable and then they're found in their apartment on a Monday morning after having no help over

the weekend, just on the floor. They have not eaten, they have not had a-


Matt George (00:27:42):

Sure.


Maureen Bennie (00:27:42):

... drink, they're completely dehydrated, because that signal never came to them, to have them go and

get that drink of water. So that was a big revelation. And then through Kelly's work, I started to really

pull this into the toileting issues, because this is probably... Toileting and feeding and eating, the biggest

amount of mail that I get is on those particular issues.


Matt George (00:28:10):

Oh, wow.


Maureen Bennie (00:28:11):

But particularly in the toileting, it seems to be around constipation and withholding the bowel

movement. Which got me to thinking again, is this that the person is not feeling this need to go? And

the problem is when you withhold a bowel movement, after a certain period of time, it gets harder and

harder. And then it becomes this vicious cycle, because then when the person does try to poop, the pain

level is so high and now you're getting a fear and anxiety components tying in with this.


Maureen Bennie (00:28:44):

So my blog post this week was on constipation, withholding and what we call overflow, because

sometimes too when you're withholding a bowel movement, then you get it's like diarrhea leaking out

and the parent will think, "My child has chronic diarrhea," and it's not, they're actually chronically

constipated, and they're getting this leakage coming out. So there's so many issues around that, and this

is this interoception piece that really, in my opinion needs to be pulled into so much more of the work

that we're doing with any neuro diverse population. Because if I look at myself and say, "Okay, what are

my interoceptive issues?" I took up figure skating as an adult at the age of 40. And I'm competitive and I

compete in Europe and I'm really enjoying it, it's been my big self regulation piece with all the stress that

I have in my life. But-


Matt George (00:29:43):

That's fantastic.


Maureen Bennie (00:29:44):


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