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.”
Riley’s experience seeking out help
Once Riley found out he had autism, he believed he’d finally get the help he needed to move forward. He came to find out that it wouldn’t be so simple.
What was it like for you, trying to get support for yourself?
“I think in terms of autism support, there really wasn’t any. The fact that I got diagnosed so late [at 17] meant that all the support for children in Cornwall through Additional Support and Disability Advice services weren’t offered to me because I was too old. I got given three sheets of double-sided paper with random books and support services on it and basically told to get on with it.”
I asked about this information and found out that most of the books and websites he was directed to were for children rather than adults. Which, understandably, did little to lend Riley confidence.
Whilst there are services available that can help Riley, he says, for the most part, they’re there for one specific purpose, rather than to help him with everyday tasks.
“I think there’s definitely a lot of support for disabled people getting into work and education, but I find there is very little support for everyday life. Hopefully, soon I’ll be getting into some kind of respite care, but that is to help my family more than it’s going to help me. Hopefully, that’ll lead to a long-term placement with shared lives, but we don’t know what will happen yet. You’re very much thrown out of the loop. It’s very much, let’s talk about the disability rather than the actual person and what their quality of life would be with the right support.”
So, how do you navigate all of that?
“I think being able to say the right things in the right way to medical professionals can really help you get the right diagnosis. It’s a constant battle with disabled people in general to find the right things to say. To not sound stupid but also not to sound like you know better than the doctor.”
What could change?
I’ve found that the emotional impact of seeking support and guidance is pretty much the same for every disabled person I know. It’s gruelling, and we all have ideas on what can be improved.
Riley is no exception.
I suppose one of the biggest parts of this interview is to ask: how does this make you feel?
“I think it’s incredibly frustrating, and it’s very overwhelming. You’ve got so much going on in so many different ways. I feel like I’m seen much more as a disability than a person. I feel like it’s incredibly degrading sometimes to consistently prove your disability, but to also prove your ability and the fact that you can do things, but sometimes you just need the help.”
In your opinion, what would you like to see change?
“I think there’s hundreds of things that could change in society to help us in general. But getting doctors to understand that we know our bodies better than they do would be a great start. Also having access to things like gyms and swimming pools at a reduced rate but also have the ability to take somebody with you, to help you. Because, again, that’s a tool we can use to support us. And then the understanding that diagnosis is incredibly important even if we don’t get the support from that. Just understanding how our bodies work or how our brains work and the fact that we are different and it’s okay to be different, and it’s okay to need the extra support. It’s super important.”
Do you need some help?
Did Riley’s story about his autism resonate with you? Not sure where to look for help? Try some of the links below to start your journey to gain the proper support for you:
About the author
Lauren is a freelance writer from Falmouth. After graduating from university, she took a keen interest in writing about disability, so her story and others like it could be told with passion and conviction.