Living with Aspergers - Matthew's story

For Disability Pride Month, Matthew from our Community and Group Development team shares his experience of being diagnosed with Asperger's syndrome. He reflects on social anxiety, his coping strategies and what it's like to work in a people-centered role.

I was diagnosed with Asperger's, a form of autism when I was 13 in 1998. Autism has had a massive impact on my life, and in my view, has directly led to me having social anxiety issues which affect my life and work.

When I was a child and teenager, Asperger's would affect me in that I struggled to make friends (something that I still struggle to do) and I often struggled in social situations. I would often find myself putting my foot in it (saying something that was inappropriate) when speaking with people and not knowing why.

When I went to university in 2004, I struggle with making friends again which led to me experiencing severe depression for the first time, forcing me to drop out of university.

Like a lot of people with Asperger's, I can become extremely interested in a select number of subjects (develop a special interest in that). Over the years that has meant I’ve spent a lot of time researching a number of minor interests, such as finding out everything about a sport I like (especially motorsport, but more recently that included researching the difference between the 1996 and 2000 Manchester Olympics bids). But this can be random things based on something I just read or watch (and these do change over time).

I find myself more able to remember random facts about historical events than remember what I need to do that day. Another way Asperger's affects me is that I fiddle a lot and always need to be doing something with my hands. Over the years I’ve broken countless things (including a lot of coat hangers) because I’ve just been fiddling with them. I usually also have a triangle made out of the K’Net (toy) as something to fiddle with when my hands are not doing anything else.

Today, I still struggle in social situations. I find it very difficult to start conversation with strangers, something that makes my role as one of the Rethink’s Community Group Development Officers more challenging. In my role, I meet with people who want to start new groups, and on occasion that means meeting people for the first time in public places (like coffee shops). I find that social awkwardness of going up to a stranger and asking who they are to be utterly terrifying (although the move to online video conference has helped, as I usually meet someone online before I meet them in public now).

I also struggle with cold calling people on the telephone and where possible, I still prefer communicating with someone via email. If I must speak to someone on the telephone, I will often email ahead to arrange a time to call to reduce my own anxieties about this.

I don’t go out and socialise very often because I find it very difficult to be in a room with strangers (or people I don’t know that well). I tend to try and go shopping (for the stuff I can’t buy online) late in the evening, when it is quieter.

In a work setting, I find it difficult joining large meetings with people I don’t know. I probably appear quite rude in those meetings because I’m always looking down on my phone or another screen, and not interacting with the other meeting attendees. But I do that because I struggle to start off conversations with people. When I try, my mind goes blank and I struggle to find the words to continue the conversation. I don’t feel I know how I can interject or start a conversation with other people who are already in one.

In the last few years, I've found that large online meetings, on platforms like Zoom or Teams, are a challenge for me as well. I find that if I go into an online meeting of eight or more people that I don’t know (and I perceive everyone else in the meeting to know each over), I often start to have an attack of anxiety and get so worked up that I’m unable to talk and contribute.

I do sometimes think how odd it is that somebody who really struggles to speak with other people and to start up conversations, has ended up doing a job which is all about communicating with people and building relationships with volunteer group coordinators. But I can do it. Once I get to know people more, my anxieties reduce.

I do think I can relate to and recognise other people’s feeling and emotions, although sometimes I do get a bit awkward and struggle to continue to find the words in a longer conversation. I try not to come across as dismissive and insensitive, but I worry that sometimes I do. It’s something I continue to work on.

I have some coping strategies - some are better than others, for example, I often try to arrive at meetings just in time, so I don’t have to put myself in an awkward social situation (although, that results in me arriving late more often than I’d like).

I’m very fortunate that I have very supportive colleagues within the Community and Peer Group Development team at Rethink Mental Illness. My manager is extremely supportive and helpful when I’m having difficult days. I know what it's like to be within an unsupportive team, so I’m very appreciative to be in the team I’m in now.