In This Episode
Maureen Bennie, parent of two adult children with autism and founder of the Autism Awareness Centre teaches us about our eight sense, interoception, and how consistency and commitment make all the difference. She also introduces us to the concept of developing fluency in what works for each one of us in managing sensory overload.
About Our Guest, Maureen Bennie
Maureen Bennie created the Autism Awareness Centre in 2003. With the goal to address the gap in support, information, resources, and advocacy for those struggling with autism spectrum disorders. For Maureen, education, and knowledge bring positive change to the lives of those affected by autism and autism spectrum disorders.
Her personal experience
Maureen’s personal experience is amazing. She is the mother of two young adults with autism – Marc and Julia. For 8 years, she managed an at-home Intensive Behavioural Intervention Program. It involved working with speech pathologists, child development specialists, psychologists, occupational therapists, and physical therapists and her children.
Maureen has written over 200 articles and book reviews that have appeared in magazines, newsletters, and websites throughout North America and the UK. In addition, She is also an active presenter throughout Canada on autism topics.
She presents book resources and how to use them, topics in autism. Maureen creates book lists for various audiences and writes book reviews for publishers. Finally, she assesses libraries at organizations and tells them what areas they are lacking up to date information in. She was a contributing author for the SAGE Handbook of Autism and Education published by SAGE, in September 2019.
Takeaways From This Episode
COVID-19 has been a unique experience for all of us.
First and foremost, it is a healthcare crisis. But for many, it has become so much more. I asked Maureen to reflect on how the Autism Awareness Centre has responded to the pandemic given that they have been mainly a conference and training provider. She talks about having to cancel her upcoming events and how she has had to pivot like so many others:
“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.
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.”
The pace of change
Maureen brings to light a fascinating point. One of the many things the pandemic has done is it has accelerated the pace of change. We’re now diving head-first into our list of things we knew we needed to do. But simply didn’t have the time, space, or motivation.
On top of her successful webinars, Maureen has also stepped up her writing to provide value for those who rely on her expertise.
So I began to write a blog that was COVID-19 related every single week on a different topic. I covered increased screen time, sensory issues around wearing personal protective equipment.
With that, we were off and running in our conversation around sensory-friendly solutions and the impact of the pandemic. In Episode 1 with Dr. Sarah Gander, we discussed the disruption of our routines.
How those who struggle with sensory overload often need a routine to balance the hustle & bustle of the modern world.
Maureen was quick to offer her personal experience in this space with her adult children who live with autism. It’s a relatable moment in some ways. We are all struggling to adapt to this new world. That often means working from home. We are in close quarters, sharing living spaces that now also double as workspaces.
“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. Of course, all of that is basically gone now.”
This loss of routine, Maureen notes, may have consequences we under-estimate or forget altogether. For those in the industry and with Maureen’s level of expertise, family violence is very much a concern.
“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. 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.”
Counteract with routine
What action is Maureen taking in daily life to directly intervene against this disruption in routine?
“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.”
“And it was interesting, because I thought my daughter in particular was going to do a lot better. 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…”
Manage Personal Protection Equipment (PPE)
Maureen also had to conceive of strategies to encourage and normalize, the use of PPE with her children. This was an aspect of the pandemic I had not appropriately considered. It was a revelation as Maureen began:
“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.”
This may all sound overwhelming. However, there are strategies we can implement in daily life to discover sensory-friendly solutions. We can make small positive changes daily. How you may ask? As Maureen says, it’s all about consistency. Remember: what we measure gets managed. Maureen has encouraged all of our listeners to set goals as a family.
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.
The Eighth Sense is the key
With Maureen, we then dig into the world of Interoception, often called “The Eighth Sense.” Maureen has worked on communicating the manifestations and effects of Interoception with her collaborator, Kelly Mahler.
“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.”
So it’s how do you help that person recognize, like someone like my daughter, who’s saying, “Mom, my chest is rising.” And this is the first time she’s been able to express that…
So I’ve worked for years to try to get Mark and Julia to feel these different kinds of sensations and identify them.”
Interoception is deeply rooted in the idea of the mind-body connection, another fascinating exploration with Dr. Sarah Gander in Episode 1 of the Sensory Friendly Solutions Podcast. Dr. Gander shared her strategy of pause and breath. Once again utilizing the eighth sense as a key to being calm. Feeling connected.
…this ability to articulate it is not there. So wouldn’t that be great, if through raising interoceptive awareness, we help give our kids this language where they can start to point to things because that’s one of the things that Kelly Mahler does is this whole body check, of going through from head to toe and helping people figure that out.
Maureen and Kelly were able to collaborate on a fantastic webinar, available now titled, “Interoception, The Eight Sense Webinar- Impact on Behavior, Regulation, and Positive Mental Health.”
…how do we take this, knowing this information to the next level? How do we create interoceptive awareness? What kinds of materials can we use to support people to get this increased interoceptive awareness because you can see if people have that, their level of independence is going to be increased.
Manage sensory overload
As we always do on the Sensory Friendly Solutions podcast, we ask our guests what is one strategy they implement in daily life to reduce sensory overload?
For Maureen, it’s about consistency and commitment.
“I think my top one, again, would be sticking with routines and keeping the predictability.”
“And also, again, get those calming strategies in place, what works for your child, make sure they get fluency in that, start to help them recognize when that anxiety is building, “Oh, it’s time to go and do some WeFit.” Or it’s time to do some deep breathing to music or whatever it is that works for that particular family.”
Christel really appreciated Maureen’s acknowledgment and reflection on the potential for family violence at this moment.
“And I thought that it was incredibly important for her to recognize that and that violence in families and in households is something we often shy away from talking about recognizing or admitting it exists in our families, in our home, in our circle of friends, in our neighbourhoods, in our colleagues at work.”
Help for Family Violence and Domestic Violence
What our guests have been particularly fluent in, is giving actionable advice and a window into their world.
Maureen gave so many just very concrete examples of how she problem solves. The challenges of daily life, I’m going to say in general. And then with the added burden of COVID and coronavirus. Maureen is someone who, because of her work at the Autism Awareness Centre has this incredible toolkit of knowledge and resources available at her fingertips to go find ways to help. I think recognizing that not everyone has that at their fingertips. And that’s why we’re talking about these challenges, and trying to give examples of solutions here. The Sensory Friendly Solutions podcast, let’s share ideas. Let’s share ways to help and recognize that everyone at this point in time needs help.
The eighth sense
Our discussion around Interoception was particularly interesting. In addition, we have more resources available for our listeners.
Maureen, introduced the eighth sense, interoception, that internal body sense. We have a blog post about all of the eight senses. And very specifically, Maureen gave a lot of examples. But the one that was just this fortuitous coincidence for me where she talked about how going to the dentist is incredibly difficult, because it’s such a sensory experience…
We did an interview with Dr. Peggy Bown for her YouTube channel. And she talks to me and talks to our MBA graduate and dentist, Dr. Dhilip Kasthuri Rengan about sensory friendly dentistry. It really highlights some of the easy solutions that can be put into place to tackle that that big problem of going to the dentist when sensory sensitivity is a challenge.
Throughout the course of the Sensory Friendly Solutions Podcast, we want to ensure that you take action. Moreover, we hope we have, in some way, improved your quality of life.
This week’s innovation segment is focused on the incredible resources available on the Autism Awareness Centre website. Here are some examples below of what you can expect to learn from Maureen and her team. As well, there are links to help you engage with the material directly.
- Conferences & Training
- Autism Awareness Centre hosts informational conferences and training seminars in Canada, the UK, and worldwide. They are for both parents and professionals. Their conferences and training give an in-depth look at the cutting edge resources available, and tips on how to use them.
- Autism Books & Conferences
- The Autism Awareness Centre’s books and products are a curated and robust collection of hand-picked books and resources on autism and related disabilities. This means all titles are selected personally by Maureen. She researches and reads each book.
- Autism Awareness Centre’s webinars are a great way to gain access to Maureen’s 20+ years of knowledge. It has an informative and engaging exploration of topics for busy parents, support persons, and care professionals.
- Articles & Blogs
- Maureen Bennie curates a news blog for Autism Calgary called “What in The World is Going On About Autism”. Her blog often mines and expands on the articles and events that she has detailed in that news feed. She also looks at the current best autism resources, news stories, and events on a variety of topics about autism and ASD.
Maureen is prolific. And her weekly blog post topics range from her personal experience as a parent of two children on the autism spectrum to detailed coverage of top news stories, events, and resources concerning autism spectrum disorders (ASD).
For a comprehensive list of webinars and online resources from Maureen and her team, click here.
Maureen, thank you for your great work and for your participation in the Sensory Friendly Solutions Podcast.
Thank you for being on this journey with us.