Taking control of anxiety
How research-based technology can empower autistic people
Anxiety is a part of the human condition, a protective emotion to cope with perceived dangers and threats in “fight or flight” situations.
However, continuous feelings of anxiety can have a profoundly negative impact on a person’s ability to live their life to the full, as their fears and worries take over their thoughts and their ability to function.
Evidence on anxiety among autistic people
The evidence suggests that most autistic people experience anxiety. For at least half of them, this is severe and affects their ability to flourish and succeed in life.
A 2020 survey of over 1500 autistic people, carried out by the National Autistic Society, found that:
- 2 in 5 are currently diagnosed with anxiety
- 47% fall into the severe anxiety category based on Generalised Anxiety Disorder (GAD) diagnostic criteria
- 94% experience feelings of anxiety, with almost 6 in 10 saying this affected their ability to get on with their life.
More recent surveys of Brain in Hand (BiH) users have found that:
- 96% of adults identifying as autistic were classified as experiencing anxiety using the Hospital Anxiety and Depression Scale (HADS). 76% were classified as experiencing moderate to severe anxiety.
- 83% of 16-25 year olds identifying as autistic as part of a self-referral initiative reported clinical anxiety symptoms based on the GAD2 screening tool.
Brain in Hand
Brain in Hand is a digital self-management system combining practical human support and simple technology to help people live more independently. It is goal-oriented and user-led.
BiH is designed for people whose needs may include, for example, support with planning, problem solving, and initiating tasks. It helps them establish routines, deal with unexpected events, and manage the stress and anxiety that can arise when things go off track.
BiH uniquely combines the best of technology with the best of human support.
1. One-to-one human support. A qualified specialist coach helps new users to identify their goals, recognise their strengths, and develop their own solutions to overcome problems. This helps users get started in the right way.
Ongoing one-to-one coaching can be scheduled by the user at any point to keep them on track throughout their journey, maintaining motivation and helping to prevent escalations in anxiety.
If things get too difficult users can access extra human support on-demand 24/7 through a simple traffic light system.
2. Simple digital tools. Users have practical and simple digital tools to manage their anxiety, remember things, plan their days and life, and make decisions. They can monitor their mood, through the traffic lights, communicate how they are feeling and reflect on emotions to build coping strategies for the future.
Accessible in the moment via their phone or smart device, BiH provides discrete and personalised support when and how users need it.
“Brain in Hand is recommended for people who experience anxiety arising from a range of clinical conditions. One of the key features of support for people with anxiety is helping them identify the early signs of an anxious episode so that they can implement therapeutic strategies to manage the anxiety before it gets ‘out of control.’
It is also well documented that anxiety conditions can negatively impact skills such as planning, problem-solving and initiation of actions. The Brain in Hand support system is designed to help with the management of these difficulties in day-to-day life.”
Listening to BiH users
By listening to our BiH users, we have learnt how anxiety can negatively impact their lives and how using BiH can help them overcome these challenges.
Anxiety can manifest itself in many different ways. BiH users have spoken about a range of challenges they face, from dealing with an immediate, unexpected situation – such as a train being cancelled, which could lead to a panic attack – to a slow and gradual build-up of day-to-day stressors that could result in a complete meltdown.
In a recent national survey conducted by BiH, 76% of autistic people identified that managing overwhelm (and/or managing emotions) were areas in which they most needed help.
Our BiH users are highly diverse in their needs and lived experiences, and some of this diversity is evidenced in the following four narratives where users reflect on what their challenges were before joining BiH and how things are changing for them.
Users’ names have been changed to protect their identities. Likewise, the photos shown are not of the users whose stories are recounted.
Fiona
[When I started using Brain in Hand,] I'd recently been stepped down from a mental health pathway and was recommended Brain in Hand by my case worker.
[At that time, I was trying to] manage everything, like having panic attacks, being in public, doing day-to-day things which people take for granted… If something went awry, that I had not expected, I wouldn’t know what to do. If the train was late, for example, I just wouldn’t know what to do. If I had an appointment but the train was late—and made me late—that would be unacceptable. It would throw me off for the rest of the day, and I would find it difficult to regulate, feeling frustrated and angry.
Now that I’m using Brain in Hand, I don’t really need to worry about things as much. I can use it if I have travel plans, to prepare in advance, if I need to change trains, or if a train’s not running and I have to get a replacement service. With Brain in Hand I’ve got everything planned. I have strategies for the unexpected—if there’s nowhere to sit on the train or the bus, or if it’s too loud, that sort of thing.
My mental health can be a bit up and down from day to day, so having Brain in Hand really is a good thing. It’s good to have a system [like the traffic lights and in-the-moment support]. It’s nice to know there is a safety net there for me should I need it. I’ve only pressed amber a few times over the last few months, and that’s all I needed to calm down and regulate. It’s really great."
Harry
Harry is autistic. He was first introduced to Brain in Hand by a local health care practitioner who thought that it would help him prepare for independent living.
Harry really likes BiH’s reminder feature. He uses it in the morning and throughout the day to make sure he doesn’t forget something important. Like taking medication, preparing to go out or shopping. The reminder feature has made a major difference to Harry’s life. He doesn’t forget to take his medication or to accidentally take it twice, which has previously led to serious consequences.
Harry uses Brain in Hand to plan his week, thinking through potential problems that might arise as well as useful solutions and strategies that he can access any time he is feeling overwhelmed. At the end of each day, he reflects on how the day has gone using the timeline feature. If any problems occurred, he adds new solutions to help manage similar situations in the future. He sees using BiH in this way as a learning process, enabling him to progressively lessen his stress by developing new strategies.
Harry’s goals include going out and socialising more. For example, for the last several years, he has been doing all his shopping online. Avoiding having to face the challenges he faces when visiting shops in person. Now, with Brain in Hand, Harry feels prepared because he knows that if he feels anxious or troubled, he can access some extra help.
Harry has been told that it would be unlikely that he would ever get employment. He has proven them wrong: not only is Harry employed he is also on the waiting list for independent housing.
Amelia
Amelia was referred to Brain in Hand to help them better cope with daily challenges such as leaving the house and coping with social situations. Before BiH, Amelia struggled with their mood and motivation to complete basic tasks. They felt reluctant to engage in activities, or to meet up with friends or family.
"I was very reluctant to leave the house, always trying to find reasons to not do things...or just go out at all."
Now, using the diary and unplanned section to break down tasks, such as going shopping, into manageable steps, Amelia can better navigate their challenges. From their perspective, one of the most effective aspects of BiH is that the system is so customisable. For example, the solutions in their diary are their own.
"Seeing them written down helps me feel that this is actual advice for me."
Amelia also uses BiH to write themselves different versions of affirmations like “everything’s going to be alright” that appear throughout the day to help them better regulate their thoughts and anxieties.
While Amelia also uses the traffic light and mood monitor to check in with themselves throughout the day to regulate their emotions and better manage their anxiety, what is particularly significant for them is the type of support offered on demand compared to other mental health support services.
“It’s brilliant to have someone checking in, asking how is everything...if there is anything I want to talk about, with no hidden agenda."
For Amelia, BiH is a number of things: It is "something that can help you have a healthier mindset," it is an "interactive notepad" that offers support in a way "that can't really be done anywhere else," and it is a service that is "geared towards you looking after yourself” which in their opinion is a "much better way of doing it."
Micah
Micah was referred to Brain in Hand to help with his anxiety, time keeping, and memory. Micah hopes that by working on these things, he will also be able to improve his confidence and support his future independence.
Micah was supported to create content with the help of a BiH specialist. He found the technology very easy to use and understand. He felt that everything about the setup process ‘made sense.’
“The specialist session and my specialist really helped me to understand how Brain in Hand works and how to use it.”
After his first coaching session, Micah quickly began using his diary for everyday tasks, and it is still his favourite feature. “It is easy to read and clear to see. It’s been set-up especially for me. I like being able to colour code different activities, and I like the reminders.” Micah is starting a work placement soon and intends to use the diary to plan the week, structure the day, and to access solutions to problems he might encounter.
“Having access to my solutions has been really helpful. For example, for answering the phone, I have solutions to remind me what to do to help reduce my anxiety.”
Whilst Micah hasn’t had the need to request support in the moment yet, he is glad to know that help is always available should he need it.
Micah believes that Brain in Hand has helped him to be more confident in his life, for instance when talking to people or making his own decisions.
“Brain in Hand has helped me work towards my goals. I have been able to book evening classes. I feel more confident doing this independently. For myself.”
The impact of BiH
As well as listening to our users about their challenges and changes BiH has made on their anxiety levels, we also conduct short surveys of some of our user cohorts which reinforce the positive impacts that using BiH can have on levels of anxiety.
90% of 45 users referred from 13 different services with anxiety related mental health challenges reported positive impacts related to anxiety management.
1 in 3 students using BiH over a 5-month period no longer “felt anxious often.”
A recent large-scale independent clinical research study demonstrated that BiH significantly decreased anxiety (as assessed by HADS scores) and self-injurious behaviour; and increased quality of life (as assessed by HONOS-LD scores) in 66 people diagnosed or suspected ASD level 1 from 7 NHS sites after 12 weeks.
Higher Education
A key target group of BiH is autistic and other neurodivergent people who are pursuing higher education. BiH currently provides more than 6000 licences through the Disabled Students' Allowance (DSA) to students across more than 400 higher education sites in the United Kingdom and routinely consults with student users to better understand their needs, challenges and uses of BiH.
In a recent survey, 45% of students that had been provided with BiH through a Disabled Students' Allowance (DSA) stated that it had specifically helped them manage anxiety.
Furthermore, 81% of students felt more able to cope with day to day stressors, and 75% said it had improved their quality of life. A similar percentage stated they were more able to participate at university.
I found starting university very difficult ... when I entered the building for the first time, I nearly had a panic attack. I opened the app and looked at strategies for the situation. That helped me calm down... Knowing it’s there is reassuring, and having it set up for university this year made a big difference in my anxiety levels.
The students provided insights into three ways that BiH supported them in managing their anxiety.
In-the-moment solutions
Students said that planning events and breaking them down helps them prepare for and cope with situations that cause anxiety.
The calendar function was very useful because it made me less nervous about missing things, which gives me more time to get things done rather than spending time worrying.
Managing the unexpected
Students felt they could prepare for “worst case scenario” events and felt they could more independently help themselves when emotional situations occur.
I have been able to use this quite flexibly to remind me of strategies to manage my anxiety and help me to develop my emotional awareness.
Mood monitoring and self-awareness
Students said it helped them notice patterns and triggers which cause anxiety, helped them express how they were feeling, and enable them to reach out for help more.
Brain in Hand helps me keep an eye on how I am feeling: to comment on my moods and what has triggered a collapse or what has made me feel good. This enables me to self-manage my moods.
Expanding our services
Listening to our users referred though health and social care, the students being provided with BiH as part of their DSA, and those now who are self-referring, has helped us understand how BiH is helping people manage their anxiety. The challenge we are now setting ourselves is how to increase the number of people that are able to benefit from the BiH support service. We are approaching this in three ways.
Providing it to more people
The traditional referral pathway through health and social care or a DSA relies on a formal diagnosis of a mental health condition or disability. Long waiting lists for autism diagnoses means that many people are falling between the cracks and are not being able to access support. We are trying to shift this inequality by trialling ways that people can access BiH through self-referral.
Getting it to people at the right time
Timing is everything. BiH works best when implemented preventatively, with users setting up their apps during relatively calm and stable periods –not during busy and stressful times such as starting University or during a crisis.
Making it easier to engage with
Some people find creating their own content daunting at first, but, as many users have told us, you get out what you put in. Our product development team is continuously working with users to make it more accessible. Recent developments include “solution packs” with pre-set solutions to common challenges, informed by existing users, and an introductory video to help new users get immediate value out of the app.
This is a stock image and is not intended to be a true representation of the user represented in the quote.
This is a stock image and is not intended to be a true representation of the user represented in the quote.
Takeaways
Anxiety is something that autistic people experience because of how the environment around them impacts their lives. It is not something to fix, but rather something that can be managed with a set of tools that enable people to develop skills and in-the-moment solutions to navigate stressful situations and environments.
"There are certain things that you just can't fix, but that’s not a bad thing. Brain in Hand is purpose-built to help you, and it does exactly that. It can't cure depression but what it can do is help lessen the impact of your own anxiety and help you process your thoughts better."
For more information about Brain in Hand please contact Mat Taylor, Commercial Director.
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