This week (Monday 14th-Friday 18th October) is Advocacy Awareness Week. The theme for this year is #AdvocacyWorks – how advocacy can help people to be heard and get their rights upheld. For this, we will be talking about our self-advocacy tools and how and why we made them.

In our early days (2015-2017), we produced a few tools and helped people to fill them in at our Autism Hub sessions. They included the first version of our autism alert card, a one-page employment profile and one-page health profile. All three were made because, at the time, employment and health were major areas where autistic adults locally faced disadvantages.

All three promoted self-advocacy, giving the people we worked with something to communicate their needs. The alert card could be used in any situation. For anyone needing to get reasonable adjustments at work, the employment profile clearly spelled out what they needed. The health profile helped clients to get across their difficulties in accessing healthcare services.

Covid-19

Initially, we produced dozens of each resource every year. However, the numbers grew and as more people joined our staff team in 2018 and 2019, we looked at other tools we could produce. Speaking to clients at our Hubs and elsewhere, we found that there was a need for resources around communication and socialising.

Planning was underway for this work, but in March 2020, the Covid-19 pandemic hit. In a world where working from home was necessary, the AIM put our heads together and thought about what might help those we work with to maintain some kind of routine.

For some autistic adults, routine is important as it helps to ensure certainty and reduce the possibility of sudden, jarring changes happening. With most of our team being autistic themselves, we thought about creating a suite of planning tools. This included:

All the above tools proved popular, with organisations including NHS England singing their praises. Download numbers soared, all while helping autistic adults locally to set new routines to cope with the ‘new normal’.

Working together

As restrictions eased, the AIM service went in new directions. The setting up of our now-defunct Health Access Project saw a range of tools developed by the team, including a symptom diary, pain scale and emotion thermometer. All of those had input from our clients and are still being used today!

Speaking of health, we got together with the Leeds Teaching Hospitals NHS Trust’s Learning Disability and Autism team, Leeds Mental Wellbeing Service, Leeds Autism Diagnostic Service (LADS) and Leeds Mind to put together an autism health passport for Leeds. It would include sections on experiencing pain, sensory needs, mental health and communication.

The passport, launched in 2021, has been downloaded hundreds of times. Working with relevant services has helped to improve how local health services support autistic adults when in hospital.

Another example of how working together has led to a popular resource being created is the Leeds Autism Alert Card. Working alongside West Yorkshire Police, Specialist Autism Services and Healthwatch Calderdale, we made a pilot card for autistic adults in Leeds, with a view to expanding to other parts of West Yorkshire.

In its’ first year, we made around 300 alert cards, printed on plastic and distributed to recipients by post. Since then, we have made improvements to the cards, ensuring that the information is personalised and that people wanting a card can say what they need to say.

Listening to clients

The card and health passport were both shared with clients for their feedback. After taking on board what they told us about the design and content of both, we acted on their feedback by making changes before they were published.

Going to the present day, many of our newer resources were made after speaking to our clients. They told us what they have difficulty with verbalising and, as a result, we have made resources with their input.

This has helped with the development of our Communication Profile, as well as some of our more recent guides and resources for the Mental Health Equity Project.

The most recent example is our Services Profile. This is where information about communication and sensory needs, as well as how to help someone during a meltdown or shutdown is included. The same profile can be used to show to multiple services, especially useful when trying to note down what you need support with.

This resource, as well as many of our more recent ones, have received input from members of our Co-Design, Feedback and Review Group.

Recognition

Resources play a major part in what we do – helping autistic adults to speak up for themselves is something the AIM team are passionate about. This helped us to win the Outstanding Service Award at the 2023 National Advocacy Awards.

In addition to that, we have received praise from local, regional and national organisations for our work. Getting recognition from so many people and groups is proof that what we are doing seems to be working. We hope to keep this going into the future.