News announcement: research collaboration

From clinical trial to community pilot: Ontario-based groups collaborate to help manage anxiety in autism

Toronto, September 19, 2018

Awake Labs, Holland Bloorview Kids Rehabilitation Hospital – with support from the Ontario Brain Institute (OBI) – have come together to bring a new technology to the autism community via a pilot with a local community partner. The “Anxiety Meter” brings together technology and clinical care to help manage anxiety in autism.

Background:

Anxiety is difficult to understand. It depends on a person’s lived experience, their biology, and their environment. That’s why we need to understand when and where anxiety happens and what triggers it. This will help us take appropriate steps to address and manage anxiety, and allow us to reach out to people we trust for support when we need to.

This can be a challenge for people with autism and their families, especially when the signs of anxiety are difficult to recognize and communicate.

The Pilot:

Awake Labs and Holland Bloorview want to empower people with autism and their trusted care teams by supporting them in identifying and addressing their anxiety and improve quality of life.

The Anxiety Meter is a patented and clinically validated technology developed by a group of scientists at Holland Bloorview. The Anxiety Meter translates a user’s heart rate into their anxiety level so the user and their care team can know when to apply relaxation strategies, like those they learned in cognitive behavior therapy. This technology has been tested in a research lab to show that it can successfully detect anxiety.

Awake Labs’ is integrating the Anxiety Meter with its existing platform, Reveal Stories, to ensure care teams have access to the most up-to-date strategies and can share important information about what the anxiety triggers may be. Piloting the Anxiety Meter with Reveal Stories in real-world settings is the first step to making this empowering tool available to those who need it.

Partnership and Impact:

The goal of the pilot is to leverage Awake Labs’ platform and existing wearables that measure heart rate in order to apply the Anxiety Meter in a community setting. The agreement between Awake Labs and Holland Bloorview brings scientific and technological expertise and a strong partnership with a local organization that will help bring the benefits of the algorithm to the global autism community. This project is supported by the Ontario Brain Institute and You X Ventures, who will be supporting research and product design and development efforts.

A partnership between OBI’s ONtrepreneur, Awake Labs, and Dr. Azadeh Kushki, POND researcher (OBI’s neurodevelopment research program) at Holland Bloorview, can manage anxiety and improve quality of life for people with autism. Collaborations are central to OBI’s vision in accelerating discovery and innovation, and this project speaks to the benefit partnerships can bring to the community,” added Tom Mikkelsen, President & Scientific Director at the OBI.

About Awake Labs, Holland Bloorview, the Ontario Brain Institute, and You X Ventures

Awake Labs is a digital health company building tools to empower care for brain and mental health disorders, starting with autism. Their web and mobile apps help parents, teachers, professionals, and self-advocates improve care coordination and support decision-making. Care teams can better understand what works and what doesn’t and better design strategies that match each individual’s strengths and needs. For more information please visit www.awakelabs.com

Holland Bloorview – Holland Bloorview Kids Rehabilitation Hospital creates a world of possibility by supporting children and youth living with disability, medical complexity, illness and injury. Holland Bloorview is a top 40 Canadian research hospital that is fully affiliated with the University of Toronto and serves over 7,500 families annually. Providing both inpatient and outpatient services, Holland Bloorview is renowned for its expertise in partnering with clients and families to provide exceptional care and is the only organization to ever achieve 100 per cent in two successive quality surveys by Accreditation Canada.

For more information please visit www.hollandbloorview.ca for more information.

The Ontario Brain Institute is a provincially funded, not-for-profit research centre seeking to maximize the impact of neuroscience and establish Ontario as a world leader in brain research, commercialization and care. OBI creates convergent partnerships between researchers, clinicians, industry, patients, and their advocates to foster discovery and deliver innovative products and services that improve the lives of those living with brain disorders. For more information please visit www.braininstitute.ca

You X Ventures is a Toronto-based firm that supports wholehearted founders and teams through research, product design & training. For more information please visit www.youxventures.com

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Media Contact:

Fatima Khan
Senior Program Lead, Communications
Ontario Brain Institute
fkhan@braininstitute.ca
(647) 847-9000

 

Sasha Babakhanova
Communications Associate,
Holland Bloorview Kids Rehabilitation Hospital
ababakhanova@hollandbloorview.ca
416-425-6220 ext. 6263

 

Andrea Palmer
Founder and CEO
Awake Labs
andrea@awakelabs.com
604 790 9805


Identifying patterns in anxiety, part 2

In Part 1 – Identifying patterns in anxiety, we talked about what anxiety is, how it presents itself, and how you can use Reveal Stories to help identify signs and patterns of anxiety.

In Part 2, we will discuss how you and your trusted care team can use Reveal Stories to help address anxiety and get back to feeling good again.

 

Why should I identify signs and patterns of anxiety?

Identifying patterns can help you and your trusted care team predict when or where anxiety is likely to occur. When you have detailed information about what anxiety looks like, where and when it happens, and any hints or cues that it might be escalating, it becomes much easier to get ahead of the anxiety and calm down before the situation escalates.

Luckily, Reveal Stories makes it easy for you and your team to keep a record of these notes. It is important to remember that the signs of anxiety might be different at home than they are at school or elsewhere; that’s why it is important for the whole team to get on board. The app also makes it easy to share these insights with your whole team and to share strategies around what works to reduce anxiety.

How can I use Reveal Stories to share strategies?

Whenever anxiety happens, people have different strategies to help feel better again. In Part 1, we talked about how some of these strategies can actually be harmful to the person with anxiety or to those around them. In these cases, different strategies need to be developed and tested to see if they work.

Reveal Stories is a valuable tool to keep track of the strategies used to help address anxiety in the moment. Do you use deep breathing? Do you guide your student through some vigorous exercise? How about letting your kiddo crush a juice box or pop some bubble wrap? Use the “Quick Note” option to make a note of the strategy you use; make sure to describe what was happening before, and the effect of this strategy. You can also use the “Behavior” option to show what happens to a behavior as a result of using a particular strategy. By recording this information using Reveal Stories, the rest of your trusted care team can see exactly what you did and how successful it was.

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Want some resources for in-the-moment strategies?

  1. Journal of Cognitive Behavior Therapy – Aerobic Exercise and Anxiety
  2. Anxiety BC – Deep breathing

Can I use Reveal Stories to get ahead of the anxiety?

Reveal Stories is great to keep a record of how you address anxiety in the moment. But what about getting ahead of the anxiety and addressing it before it escalates?

Because you have identified patterns and gained a deeper understanding of the things that can cause anxiety, you can teach the person you support how to recognize anxiety for themselves and take their own steps to overcome it. It is important to teach these skills when the person you support is calm and ready to learn. Double check Reveal Stories to help you recognize where and when that happens; is your student more receptive after gym class? Does your kiddo find it easier to learn if they have access to a sensory toy? Do you prefer a quiet room or a busy coffee shop to learn something new?

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Want to learn how to teach the skills to overcome anxiety?

  1. Tamar Chansky – Systemic Desensitization
  2. Helping children with ASD face their fears
  3. Mind and Body Therapies: A Systematic Review

Important things to remember

While Reveal Stories can help you and your trusted team gain a better understanding of anxiety, it is important to remember that it will take time. Patterns will begin to emerge when you have recorded enough information – this can sometimes take a few weeks!

Fortunately, when you invite your team to collaborate with you, this task becomes much easier. Not only can you rely on your team to help you record valuable information, you can also rely on their help to identify patterns and share strategies to help address anxiety.


A child sitting on the grass.

Identifying patterns in anxiety, part 1

Before we talk about how to use Reveal Stories to help identify anxiety for each individual, let’s go over what anxiety is and how it can present itself.

What is anxiety?

Anxiety is a response to a perceived threat. This means that our brain sees danger, even though danger may not exist at that moment. There may be a number of reasons that a threat is perceived – one of them could be that our brain is remembering a time when it was actually in danger. For example, you may have experienced a scary moment in a grocery store. Next time you enter that grocery store – or any grocery store – your brain remembers that scary moment and it responds with anxiety.

Another reason could be that our brain associates danger with things that aren’t necessarily a threat. Common examples include public speaking, being in a loud and busy crowd, missing an appointment, or certain animals like dogs and bees. Knowing that we have to stand up and speak in front of a crowd in 10 minutes will often send our body into overdrive!

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Curious to find out more about the science of anxiety? Here are some links for you

  1. WebMD – What are Anxiety Disorders?
  2. Anxiety, autism may share common basis
  3. Unmasking anxiety in autism

How can anxiety present itself?

The moment that our brain sees danger, our body responds with what is sometimes called the fight or flight response. Our body gets ready to deal with the danger – our muscles tense, our heart starts racing – and our brain, our amygdala, releases chemicals that block our us from making rational decisions, choosing instead to act impulsively.

Anxiety is scary, it hurts, and we are willing to do anything to feel good again. This ‘anything’ can take on different shapes for different people. Some people may choose to avoid the source of anxiety before fight or flight kicks in:

  • Going to the dentist causes me anxiety –> I don’t go to the dentist –> I feel better.

Some do things that get rid of, or compete with the bad feeling in their body caused by anxiety:

  • I am anxious in a loud and busy crowd –> my body feels tense and my breath feels short –> I bounce my leg and take some deep breaths –> I feel better.

Some people will react to anxiety when they can’t escape or feel better:

  • Social interactions cause me anxiety –> I am in the middle of an interaction and cannot leave –> I yell at you and lash out with my fists until you back off –> I feel better.

These are all strategies that people use to make themselves feel better when they are experiencing anxiety. Some of these strategies can be productive – like taking deep breaths – while others can be harmful. Avoiding the source of anxiety can have long-term consequences, and some responses can be harmful to the person with anxiety or the people around them.

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Want to learn more about the behavior side of anxiety? Check out these articles

  1. BAQ – can we have a behavioral science of anxiety?
  2. A contemporary analysis of anxiety and avoidance
  3. ABA in the treatment of anxiety

Using Reveal Stories to help identify anxiety

So where does Reveal Stories fit into this picture? If you and your trusted care team want to overcome anxiety, the first step is identifying when it happens. This means that you have to pay attention to signs and hints that anxiety is present.

Is your kiddo’s body tense? Did they suddenly stop responding to your questions? Is your student acting aggressively towards their classmates? Are you noticing that you are avoiding certain places throughout the week?

Reveal Stories is a great tool for everyone in the trusted care team to keep a record of these hints at home, at school, and in the community. Using the “Quick Note” option on the app, you can type a quick note that describes the body’s response to anxiety and take a picture of where you are in that moment. Using the “Behavior” option, you can keep an accurate record of an anxious behavior, its intensity, frequency, and duration, as well as a description of what was happening in that moment.

The information that you and your team record using Reveal Stories can help you identify patterns in anxiety. For example, you might notice that certain behavioral signs of anxiety always happen at a certain time of day. Or, you might see that your student’s body language shows they are tense only in specific environments.

Some of these patterns might not be obvious at first. For example, it is possible that the food you eat and the amount of sleep you get will affect how you feel. With Reveal Stories, you can use the “Sleep” and “Diet” options to record information related to sleep quality and food.

The signs of anxiety might also be difficult to pick up. It often seems that people go from 0 to 100 in 3 seconds; the reality may be that anxiety may have been building up over a long period of time. Subtle hints may be present, for example, your kiddo may ask a lot of questions about a specific topic, or start speaking louder and louder. These can be hard to identify at first; but the more information you record, and the more your trusted team gets involved, the clearer the patterns will become.

Recording information at home, at school, and in the community is a great way to identify patterns and gain a deeper confidence in your ability to identify signs of anxiety. It is also important to remember to involve your team – including the people being supported – in collecting, sharing, and discussing this information.