Autism acceptance month: Catherine’s story
For Autism Acceptance Month, we asked staff - with support from the Lived Experience Network - to share their experiences of what being autistic meant to them. Today, we would like to introduce you to Catherine who has kindly offered to share her story.
Below is Catherine’s story, in her own words.
“I want people to know that challenges associated with autism can't be solved through a mental health-only lens”
“As an autistic adult, I work in an autism-specific role in the trust, as an autism peer support worker. Even though you may think it makes it obvious since it's in my job title, many people don’t realize I’m autistic, and that lived experience is then part of my role. I am lucky enough not only to work in a specialist service with a highly person-centred and skilled practitioners but also to have a role where I can use my support worker skills as well as my peer support skills, in aiding communication and discussion, breaking down questions, and using my lived experience to inform understanding, especially around the impact of the built environment and sensory needs. Basically, I love my job!
In terms of accommodations at work, although sometimes my needs can clash with the day to day running of a service the thing I have found most helpful is not the accommodations themselves but that my team gives me unconditional permission to use them and will even prompt me if they feel I need a reminder. They listen without judgment, with curiosity and understanding. They support me to take breaks, address my human needs, grab hot chocolate together, use my headphones, and support me during fire alarms with time away. They give me space to talk through things. They let me explain my feelings in the way I express them—"funny feeling," or trying to express through hand movements when I can't find the emotional vocabulary. They let me use my preferred communication without ever requesting me to modify it to a more understandable way. Instead, they make the effort to understand me. That’s what makes my team so special and such a great place to work as an autistic person.
The one thing I would like people to understand about my role and autism is that I have experience of accessing the mental health system; however, that doesn’t make me skilled or a mental health peer support worker. Especially, autism and mental health needs co-occur, meaning they are likely to exist together, and while that is true, my experience of mental health is heavily influenced by being autistic. Therefore, I was not represented by the majority of people accessing support; I needed people to understand my sensory needs to make mental health treatment accessible. Now, as somebody who is very skilled at coping mechanisms to deal with change or challenges due to my sensory needs and autism, I am having to find and learn new coping mechanisms to deal with the challenges with my mental health. In summary, I want people to know that challenges associated with autism can't be solved through a mental health-only lens. Similarly, no amount of structure, predictability, or coping mechanisms related to autism will solve people’s mental health needs. Instead, it requires a person-centred approach from both sides that can understand, accommodate, and recognize people’s needs and consider what appropriate support could look like for them I am luckily enough to be able to investigate and advocate for myself and ask for support when needed, and that is a privilege. However, for many with higher communication or support needs, their voices may not be as heard, treatment options may not be adapted, and there may be more misunderstanding and misinterpretation of needs and the accessibility of AAC (Alternative communication) and sensory items remains an issue. This can drastically impact people's access to mental health community services and leave people without appropriate provision. Specialist autism services like IST are part of the solution, not the whole solution. These provisions are a post-code lottery, and no one person or category of people—such as speaking, hyperverbal, working, autistic people with support workers, autistic parents, —represents the whole community. Instead, it’s a spectrum of interwoven needs, interests, and strengths, with each person having their own unique challenges, joys, stories, and experiences. All these individuals deserve to be heard, listened to, and respected and catered for within service provision.”
