Change is difficult for autistic individuals. The world can be confusing and appear hostile thanks to our communication styles and sensory differences; we tend to say what we mean and struggle to filter out information which many would deem insignificant. Furthermore, many of us struggle to keep up with our thoughts, making them almost ineffable in a cogent, comprehensible way. This makes communicating with NTs (neurotypical, or non-autistic people) difficult, since we can unintentionally offend/hurt them and are often unable to understand what they’re actually saying because we struggle to “read between the lines”. Living in this world of uncertainty can mean constant discombobulation and a sense of isolation, which – more often than not – results in mental health difficulties such as anxiety and depression, and in some instances self-harm. In short: life is tough.
Making the world a little more predictable is a massive help to autistic individuals. Those (few) who are fortunate will be able to establish a support network, i.e. a close circle of friends, family, support workers and/or work colleagues who understand the difficulties they face. With this network in place, the autistic person is more likely to be able to help themselves by establishing a routine. This enables them to focus on something positive, which in turn helps them to alleviate some of their worries and mitigate some of their difficulties.
From personal experience, having a routine enables me to integrate into society whilst allowing time to focus on things which I find interesting and relaxing; whilst I’m able to socialise with NTs, it comes at a cost, and I’ve grown to realise that it’s important to take time for myself. Support with this routine has lead to a better understanding of my difficulties, with a view to working on them, and feeling less pressured has allowed me to learn how to express myself more coherently.
So what happens when one’s routine is altered? Recently I found this out for myself. Over the past six months my reality has changed significantly, to the point where I’m still uncertain whether I can talk about it in a way which makes sense. During that period my father died, I moved in with my girlfriend, survived another Christmas and I now face the prospect of changing jobs. Dad had cancer, so it was always a case of when as opposed to if he would die; his prognosis was always terminal. That said, his passing came as a shock. As with my Mum’s passing, the end came quickly, even if I did spot the signs. Dad and I had developed a closer relationship after her death, to the point where I miss him more than I do Mum. His passing meant living alone in the family home for a month, which I found disconcerting and untenable in the long-term. Fortunately, my sister has moved in and I’ve now moved out to be with my girlfriend, and both have been a big support through this time of change.
As for my routine, well it no longer exists as I knew it, which in the short-term was tiring, confusing and angst-provoking. I spent a lot of time literally not knowing what to do with myself; realising that I needed to think about my plan for the future, but at the same time not having a sense of what that could/should be. As I came to terms with Dad’s death, I realised that it was going to be the push I needed to move on to the next part of my life. My home no longer felt like home (and technically it won’t belong to my sisters and I until probate goes through, meaning it’s not mine anyway), so moving to a new place appealed to me. I knew that I was moving to a new area, so I decided that a change of career would be in order, too (I’m still working on that part). The moving process was made a lot easier with the help of my girlfriend, sister and her partner, and after three months I feel settled in my new home. Whilst my new routine isn’t firmly in place, I feel lucky for the support I received and am hopeful for the future.
For those autistic people who aren’t as fortunate as I have been, the support services in place tend to decrease as they get older. One notable exception is Impact Advocacy Service, however. Impact support vulnerable people across West Sussex with learning disabilities, autism, physical disabilities, sensory disabilities and acquired brain injury. Their service ensures that hundreds of vulnerable people are helped to: have a voice in matters that affect their lives; secure their rights; represent their interests; obtain the services they need; find out about and access groups and services in their local communities; and tell the people who make decisions about services that work well and what could be better.
Impact helped me to secure ESA in the past, so I know just how helpful it is to have access to their support. It was as a result of attending one of their self-advocacy groups that I had the idea of starting Aspie Trainers; it is also due to their continued support that I was able to make that idea a reality. Unfortunately, Impact is at risk of having their funding cut by West Sussex County Council. There is currently an online petition to campaign against this, so please sign and share it to ensure that other people like myself get access to help and support when they need it most.