See the person. Not the disability. An interview with Riley Batty.
This is an excerpt the original article was published on bua-consultancy.com
"When we talk about support in the disabled community, it can look different for everyone. Some people need medical support, whilst others need financial or social support. In fact, most of us need a mixture of these things and because everyone’s situation is different and how we gain that support can vary. For some, the process is more straightforward, made clearer cut by correct diagnosis and available services. For others, the struggle to gain and retain the proper support is an uphill struggle with many pitfalls and setbacks.
Today I sit down with Riley to discuss his ongoing journey to acquire the correct help that he needs. Riley helps run a local art group within the community that caters to all needs and abilities. He has autism and a few physical disabilities, including Fibromyalgia and Hyper Mobility Syndrome.
Riley’s diagnosis journey
So, we’re here today to discuss your experience in gaining support for your multiple disabilities. For a lot of us who have disabilities, one of our first major support networks is school. What was your experience like in school? What sort of support did you get?
'I think support in school, in general, was okay, but I found whilst I got a lot of support with spelling and academic needs, a lot of support I was given in regards to social ability was more to make myself seem normal in society, rather than help me understand my own needs.'
Riley struggles with social communication and interaction. He also has difficulty keeping up with his work and often needs people to explain things to him multiple times. On top of this, Riley can find it hard to regulate his emotions, which eventually led him to seek out answers from doctors.
We went on to discuss Riley’s diagnosis journey and what he gained through it. Even though he was seventeen when he was diagnosed with autism, Riley was diagnosed through Children and Adolescent Mental Health Services (CAMHS) to streamline his transition into adult services.
What was your experience like when you finally started to get diagnosed?
'I was very weirdly diagnosed. I wasn’t done through the general pathways, I kind of got people to understand what I needed help with, and it took a very long time to get diagnosed with autism. I was seventeen, but I’ve had symptoms of physical disabilities and autistic traits since I was a child.'
What did it mean for you to gain your diagnosis?
'I think for a lot of people, the official diagnosis of autism gives them a better understanding of who they are, what they went through as a child, why they struggled so much and gives them the ability to understand and help themselves.'
You’ve mentioned that you have disabilities other than autism. Would you like to discuss those so we can gain some insight?
'So, I struggle with Fibromyalgia and Hyper Mobility Syndrome. Which means my joints hurt a lot essentially. In terms of getting support with that, there are consistent arguments with doctors over what you need and getting the right medication that will help you and getting doctors to understand that you know your body better than they do. This whole kind of argument is that we can’t support ourselves without the right equipment.'"