In this Stories from the Spectrum, we meet Steven who shares the experience of his autism diagnosis and how this has helped him to better understand himself. 
 

When did you first know or start to think you were autistic? 

I’ve always felt that I was a bit different and didn’t fit in. I was born with a rare genetic condition called Norrie disease. This condition causes blindness in primarily male infants from birth and often leads to progressive hearing loss, as was the case with me. In many cases, it can also lead to developmental delays and intellectual disabilities, and many of the families I’ve spoken to online, or read about, report that their child has a diagnosis of autism. This wasn’t diagnosed in my case, although this was in the 1980s when less was known about autism. 

I’ve struggled in many social situations in various ways. I often struggle to keep a conversation going, as I don’t know what to say next. On other occasions, I am so desperate to say what I want that I jump in, even if another person is still speaking, as I worry that I’ll forget whatever I want to say. 

I can struggle to regulate my emotions, often overreacting with frustration or tears to very minor things. 

I can become very fixated or obsessive about particular things. For example, I have the exact number of my favourite drinks in the house. I wear particular clothes repeatedly and am reluctant to put them in the wash or have them thrown away if they don’t fit or aren’t fit to wear anymore. I also re-read particular books over and over again, multiple times in a year. There have been periods where I have read the same books over and over in a month. 

I have routines that I like to follow, including regular periods where I need to fiddle with something or spin in circles on the spot. I only feel comfortable doing these in certain places in my own home, which can make trips away or holidays difficult.

Any kind of change is difficult for me – new foods, places and people. In the past, I’ve put a lot of the above things down to my deafblindness, but I no longer believe this is the only reason. For example, I am anxious to go home after a couple of days staying anywhere, even places I know well or am comfortable in. 

I spent a lot of time during the COVID-19 lockdown researching autism and was really struck by how much of it I could relate to.

 

What have your experiences been with school and work?

When I was at school, I was considered by many of the other kids as a bit ‘weird’. I didn’t really have any friends, preferred my own company and felt like I had nothing in common with other people.

Even as an adult, I find myself struggling with, on the one hand, preferring my own company but, on the other, feeling lonely and wishing I had more friends.

I struggle to process lots of information. This is particularly apparent to me in work situations, where I find that my brain shuts down after about two or three instructions. Unless the instructions or tasks are extremely specific, I don’t always understand what is expected of me. 

In 2019, my mental health deteriorated, and I had to take some time out of work. With hindsight, I believe now that I’d reached burnout. My employers were great, but I found it really difficult to explain to them exactly what the problem was.

I believe now that I was able to mask a lot of these things, particularly from people who didn’t know me very well. I’d developed some strategies to help me do this, although I don’t think these were particularly healthy and were the primary cause of me feeling exhausted most of the time. 

 

What was the diagnosis process like for you?  

Initially, I explored a diagnosis through the NHS, but due to the long waiting times, I went private. I realise how privileged I am to have had the money to do this (nearly £2,000 of disposable income). This meant that my diagnosis journey took approximately six months, from making the initial inquiry to having my final diagnostic report.  

The clinic I used was great, but it was still an extremely emotional process, reliving many difficult memories and talking about my challenges. 

Once my diagnosis was confirmed, I felt a real mix of emotions. The first, main feeling was one of validation. I am now able to understand a bit more and explain to people how my brain works. There is support out there that I can try to access to help me manage elements I find challenging. 
 

What impact did your diagnosis have on your life? 

I’ve found having a diagnosis really helpful in many ways. It has helped me to understand why I feel like I do and explore avenues of support. For example, through the Government’s Access to Work programme, I’ve been having work coaching, which has helped me develop some strategies for managing at work.  

This coaching has also helped me know how to have those difficult but important conversations with managers and colleagues about the best ways to support me. This has helped me gain the confidence to explain to people what I need, not just in the workplace but in other situations as well. For example, I can find large family gatherings overwhelming, but now it is understood that I may need to take myself off for a while if it’s all getting a bit much. 

It’s not all been plain sailing since my diagnosis. I’ve found that many of the subconscious masking measures I had in place prior to diagnosis are harder for me to access now, perhaps because I’m now aware that what I’m doing is actually masking. I’ve found that I’m more emotional and prone to meltdowns while I’m coming to terms with my diagnosis. 
 

What is one thing you would like more people to understand about autism? 

I’m probably not the only person to say this, but I’d like more people to understand that it is a spectrum. I’ve had a lot of people I’ve spoken to about my diagnosis say things like: “Oh, you don’t seem autistic.” 

People assume that because I’m an autistic person who has fluent speech, and is able to hold down a job, then I must be doing okay. It’s hard for them to understand the effort that goes into all of these things. 
 

Do you have any special interests? 

Harry Potter (the books, not the films, that’s very important!), watching the news and Taylor Swift’s music.