Attending an Informal Meet-Up Group for Autistic Adults — My First Weeks
It took a lot of courage, but it was an interesting experience
Many months ago, I found myself wondering what it might be like to meet up with a group of autistic people. I wondered how successful it could be, given that the members would be people who tend to find social situations difficult. And would it be enough, to have nothing but autism in common?
Back then, searching online revealed one or two groups within my area, but they all seemed to meet up in the evenings. As a widowed parent with very little support, that meant I couldn’t easily go, because my children were too young to be left alone. So given that I had some doubts, it didn’t seem worth the effort of trying to arrange childcare.
Recently, I started realising that my situation has changed, because my children are old enough to be left alone for an hour or two. So I found a group that meets up every week in a small cafe, and went to see what it was all about. (It’s been a while since I’ve put myself outside of my comfort zone, by doing something like this!)
Back then, searching online revealed one or two groups within my area, but they all seemed to meet up in the evenings. As a widowed parent with very little support, that meant I couldn’t easily go, because my children were too young to be left alone. So given that I had some doubts, it didn’t seem worth the effort of trying to arrange childcare.
Recently, I started realising that my situation has changed, because my children are old enough to be left alone for an hour or two. So I found a group that meets up every week in a small cafe, and went to see what it was all about. (It’s been a while since I’ve put myself outside of my comfort zone, by doing something like this!)
Photo taken by the author. |
Meeting New People
When meeting new people, it’s hard to predict how I will behave. So before talking about the group, I want to explain a few things about myself.If I feel like I’ve got nothing to lose, and I’m in a situation where I don’t know anyone, then I can be quite talkative and confident. This can happen at job interviews, especially when I’m well-matched with the role and the people. It can also happen in meetings at work. (I have a way of finding vague parts of specifications that others miss. I will happily risk looking foolish, by confidently asking the questions that others are avoiding.)
At other times, I can make a poor impression, and be very quiet or nervous-looking. Anxiety is a major cause; here are some of the situations that make it worse:
- Waiting.
My mind goes over and over everything that might happen. It’s even worse if I’m not sure how long I’ll have to wait, I just want to get on with things, and can’t settle until the waiting is over. - Being given a list of items verbally.
This could be a list of drinks or meals to order in a pub, or travel directions. I know I’ll not remember it properly, which will cause embarrassment. - Being presented with lots of information at the same time.
This could be something like an induction day at work, when lots of new people and places are being introduced, all in one go. - Performing in front of others.
If I think they are more skilled and can do it better, I really struggle. (It’s much better when it’s something I know I’m good at.) - Being out of my depth.
If a work colleague or recruitment agency has told someone I’m an expert in a field when I’m not, I get very anxious trying not to let them down, which makes it all the more likely that I won’t recall any of the knowledge that I do have.
As I’ve matured, I’ve tended to become more self-deprecating. I’ve also become more confident and relaxed in situations that would have terrified my younger self. This was important during my late wife’s illness, because she needed to feel as safe and secure as possible, when faced with frightening health problems.
Despite all that, there are times when my confidence can disappear completely, and I’ll feel like I’m back to being a nervous 18-year-old again.
That’s enough background information, so let’s move on to the weekly meet-ups.
Week 1
According to their website, the group I found is for adults on the neurodiverse spectrum, or those who suspect that they may be on the spectrum.In the day or so leading up to the first evening, as is usual for me, I was extremely anxious — probably more than I would have been during the lead-up to a job interview. I visited the cafe during the daytime, so I’d at least be somewhat familiar with the place, as well as the journey there.
On the evening itself, I arrived too early, and couldn’t bear waiting in my car, so I just went straight in. As soon as I walked through the door, I felt much calmer. There were several small tables, set up for groups of four or six people. There was a small radio playing quietly, and some of the tables had board games, colouring, lego, or books to borrow. The people running the group made me a drink, and invited me to sit at their table.
My autism assessment report had criticised me for talking too much. With that in the back of my mind, I felt somewhat inhibited, like I had to be careful not to talk quite so much. At the same time, it crossed my mind that if I appeared too calm and confident, then they might not believe I’m autistic — which is something I’d also worried about during my autism assessment. (I needn’t have worried in either case…)
It wasn’t long before they asked me about my special interest. I felt like I’d been caught off-guard, and struggled to answer. I remember being aware that I wasn’t explaining myself very well, and I didn’t like the fact that I must have appeared so nervous.
I managed to mention that I used to have several interests, but that I’ve neglected many of them, because of the things that have happened in my life over the last several years. The group member at the table with us said that he felt the same way. It was a friendly gesture, which made me feel less alone. But I don’t think he grasped quite how much my life has changed, due to being widowed.
I tried to talk about writing apps, but I felt that nobody was interested in hearing anything like that, so I stopped. Few people other than my late wife, and work colleagues, have ever shown any interest when I talk about such things.
Despite those minor setbacks, which were mostly near the start, things went reasonably well.
The first organiser I met was interested in the assessment process for adults, and I described my experience in some detail. I think she was in the process of seeking a diagnosis, but I tend to get muddled up when people bombard me with information, so I might have misunderstood. At one stage, she summarised what she knew about me to the second organiser, which included stating my age. I wasn’t sure how to take that, and whether she was implying I looked old for my age or not!
After that, the second organiser, who has been diagnosed with autism, talked about herself quite a lot, and shared quite a few of her strengths, saying how good she is at navigating, and giving presentations. I don’t think she’d intended to sound boastful, but because I had focused on my weaknesses and difficulties, I started to wonder if they thought I wasn’t good at anything. I regretted making myself vulnerable so quickly, by exposing my many flaws to people who I don’t really know very well.
I tried not to dwell on that, and as she described a difficult situation that she had found herself in recently, I tried to empathise. It felt like some barriers came down towards the end of the night. I was also pleased to have made them laugh a little, by telling them about some of the amusing and unusual things in my autism assessment process, as well as in the final report.
Things felt a little bit awkward, when one of the members talked about pranks that he’d played at his workplace in the past, some of which seemed a step too far.
When it was nearly time to go home, I was aware that I’d only spoken to about 25% of the group. So I made the effort of walking around the room, and spending a few minutes speaking to just about everyone I could find.
Whilst doing that, I was masking quite a lot, and didn’t take in everything that they said, or their names. But I was glad I did it, because the response from everyone was fairly positive, and I felt that I would probably get along with most of the people I spoke to, and that we had at least one or two things in common.
I found myself telling the short version of my life story multiple times. Things about being widowed, being the odd one out when going for meals with the widowed group a few years ago, and how school and college were difficult. They seemed to understand, which meant a lot to me.
Before leaving, I said goodbye to everyone, and mentioned the fact that I was embarrassed that I’d probably not remember their names.
The response made me feel quite emotional. They said it was ok. They said that it’s the one place where people will truly understand things like that, and that there was no need to explain or worry.
I left feeling elated, rather like I’d done several years ago, after my first session of bereavement counselling. In recent years, I've thought about how there are very few people who know that I even exist. So it felt good to think that I could have found a place where I might fit in, and make some new friends.
Week 2
I wasn’t quite so nervous during the build-up to the second week. But I was aware that I might have received extra attention on my first week, by sitting with the two organisers. So I decided to be bold, and sit with different people, in an attempt to broaden my circle there.I shared some of my stories with the people sitting at my table, including my difficulties absorbing verbal information, such as when answering the phone at work. But it felt like they didn’t show as much understanding or empathy as I’d hoped. I hadn’t realised at first that they were not autistic, which is something I hadn’t expected given the group’s description. One was a volunteer who has an autistic child, and the other brings a young autistic adult.
With the lack of ‘me too’ responses to the stories I was sharing about myself, I started to feel like the odd one out. I also talked about how I create music by recording it in stages, and editing it on my computer. I played a ringtone I’d made, but I don’t think they were impressed. (One of their sons is a talented musician, who can perform live, unlike me.) The group was supposed to be a place to relax, be yourself, and not be judged or looked down upon. At that moment, it didn’t feel that way to me.
I didn’t see much of the organisers on week 2, but one of them asked me what I’d been doing during the last week. I felt like I was on trial. It reminded me of when I was young, and people at work asked me what I’d done at the weekend. (In those days, I would try to avoid answering, because I didn’t really have a social life, which was embarrassing.)
Despite all those feelings going through my mind, I attempted to answer, and mentioned how I’d been working on an app. But once again, because many people find it boring, I cut out so much detail that my reply was vague and meaningless.
I didn’t give up though, and shared some more of my traits and anecdotes with an organiser and another member, touching on things related to executive dysfunction, such as how I struggle when I get home with shopping, and try to decide what to do first: take my coat off, put my keys away or put the shopping away, and how I feel stressed, like I have to rush for no apparent reason.
Once again, I regretted sharing those things, because nobody really seemed to understand, and there was little empathy. I just felt embarrassed.
Little things can make me feel very awkward, such as hot drinks! On both week 1 and week 2, they made me a drink. But I didn’t go and make myself a second one, because I was worried that I would appear rude by not asking if anyone else wanted one. And if I did ask, I would struggle to remember what they wanted. I also felt bad that one member seemed to get the job of doing all the washing up. (The following week, I would feel less guilty about that, after learning that she’s a volunteer.)
So, at the end of the second week, instead of feeling elated like I had after the first week, I felt misunderstood, and like I was the odd one out. After thinking about my experience during the journey home, I didn’t think I’d want to go back again.
Ironically, one of the organisers later posted online about how she’d heard someone talking about the group, and saying that you can be yourself there, and that people understood you. A few years ago, that was the sort of thing I’d read in widowed groups after a night out, when it appeared that I’d been the only one who hadn't had a good time. And here I was, in exactly the type of group where I’m finally supposed to fit in: except that this week, I felt that I didn’t. That was a low point.
During the hours that followed, my thoughts became more balanced as my mind processed things, and I started to remember that there had been a few ‘me too’ moments. I also remembered how good week 1 had been.
Then I looked at the group description once more, and how it said that it was a place where you can fit in, and feel supported without being judged. My mind was confused by all the conflicting thoughts and feelings. The only thing to do was wait a bit longer, until I’d had time to finish processing everything.
Week 3
I had to try again, and go back for a third time. In the build-up to going out, I was feeling almost as nervous as the first week again, because things had not gone quite so well last time.Minor things seem to cause disproportionate levels of anxiety for me. It might sound insignificant, but I kept trying to decide whether to avoid hot drinks, or to be bold and make my own. I was also wondering whether I had got confused about who was, and who was not, autistic. I wondered how to clarify things, without them thinking I wasn’t paying attention last time.
Once I walked in, as usual, I felt calmer very quickly. I managed to clarify a few things, and talk about some of the things that were making me feel awkward, such as the drinks.
For most of the night, I sat with two members who I’d not spent much time with before. We had quite a lot in common, with interests such as maths, electronics, old computers and photography. Despite going twice before, I had no idea that there were people in the group who had so many shared and related interests.
In addition to talking about technical matters, we also talked about more general things as well, and shared some of our experiences, strengths and weaknesses. I talked about how my late wife had been everything to me, which made losing her even more devastating. I felt that I was being listened to, and it was good to express some of those things. It really was an enjoyable evening.
At one point, I felt troubled that I might have appeared rude, by moving away from a volunteer who I’d been talking to, so I could sit closer to the members with newly-discovered common interests. I’d been sitting in the middle of everyone for a while, but was struggling to hear, due to my sensory issues. (I can’t understand people who are not sitting very close, when several other people are talking. I wish I’d explained that.)
Towards the end of the night, I spoke quite candidly about some of the things that had bothered me, such as how I had not talked about my strengths for fear of sounding boastful, but had then started imagining that they thought I wasn’t good at anything. It was a relief to clear the air.
There were a couple of other members who I'd spoken to briefly at the end of week 1, but who were not there on week 2. They arrived a bit later in the evening, by which point I was already deep in conversation with other members. I felt bad that I still didn't get the opportunity to speak to them.
At the end of the night, I selected one of the books that were available to borrow (about sensory issues), before leaving to go home.
Closing Thoughts
For me, any kind of social contact tends to bring a mixture of both positive and negative feelings. This group has been a far more positive experience than I could have hoped for. And, as the weeks have passed, apart from a few minor setbacks, it has got better and better.I hope that I am in the process of making some new friends in the group. (I also hope that, if they find this post one day, that they are not offended!)
I have few friends left in my life these days, and I hardly ever see them for various reasons, so this group has the potential to make quite a difference.
Things to Consider When Joining a Group
I hope that you will try attending a group in your area. Here are some things that might help, based on my experiences:- Take your time. Try to get to know everyone, before sharing too many details about yourself. It's safest to be a little cautious at first.
- Don't feel obliged to become friends on social media right away. You may also wish to review your online security settings.
- Think about how to describe yourself, and what interests you might want to share.
- It’s natural to get along with some people better than others. But try to give all the members a chance; you never know what you might have in common.
- Bear in mind that there might be some people in the group who are not autistic, even if the group description indicates otherwise. So they may not all be able to empathise with your experiences.
- Give it a fair chance, and try going at least three times, to get an accurate overall impression.
- Remember that the group is probably run by volunteers, not professional counsellors. So go there with an open mind, be kind to them, and don’t have unreasonable expectations about how much attention you should receive.
- All the members have the potential to help support each other, by being good listeners, and making it a pleasant place to spend time.
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This is great. I really enjoyed reading of your experience and will be sharing it with someone I know.
ReplyDeleteThank you for your kind comment. I'm so sorry that I didn't respond — my settings must need changing because I didn't get a notification about it.
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