Why I Left the Autism Support Group

It started off fairly well, but I had to leave in the end

A small plate containing two bourbon biscuits. One is broken into two pieces. Together, they are arranged on the plate to represent an emoji which is not particularly happy - the smile is a flat line made from the full biscuit, and the eyes are the two half biscuits. A half-empty cup of tea is next to the plate.

My “biscuit emoji” to represent how I felt towards the end. Photo taken by author.

Late last year, I started attending a local support group for autistic adults. In a previous blog post, I wrote about my first few weeks there. Back then, I had high hopes — but things did not go very well in the end. 

I wanted to share my closing experience, without putting you off trying a group in your local area — which has every chance of having a better outcome than what I experienced.

The Beginning of the End

At the start of the year, I had a series of ‘bad weeks’ at the group, which made me decide that it wasn’t for me. I stopped going some time around February, and I now feel ready to describe what happened.

Almost Alone

In early January, I found myself at a table with someone who did not speak. Everyone else was sitting at other tables, and I felt like it would be rude of me to move. It was an awkward situation, and I felt very alone.

After sitting silently for some time, I decided I should try to make the best of the night, so I attempted to engage others in conversation. Doing that from a distance is never easy for me, but I asked a number of questions, such as how their Christmas holidays had gone. Despite them answering, the conversation felt one-sided and they did not seem interested in my Christmas.

A volunteer talked about problems with a gift voucher, and I spent some time listening to her and trying to be supportive. The following week, I made an effort to ask follow-up questions, and show an interest, but the reply was very one-sided and it felt like I was just there to listen.

Breaking the Ice (Again)

Realising that I’d still not had much of a conversation with the people who run the group, I made a point of sitting at a table with one of them. Then, out of the blue, some new members turned up, which prompted her to move tables. She spent the rest of the evening talking to them, which left me sitting alone yet again.

I felt quite upset about that, and started questioning whether I would want to keep putting myself in such a position.

The other person running the group never seemed especially friendly either. She made me feel like I was on the outside of their clique.

Romance or Friendship?

On the week of Valentine's Day, they organised a special evening that I did not attend. 

Their advert sent a confusing message, and they were vague about the intent. It made no sense to me, because the group was supposed to be about support and friendship, not love and romance. 

Although this doesn't really have anything to do with me leaving the group, I wanted to include it because it just seemed rather odd — and this will be my last post about the group.

Drop-In Session

A week or two later, there was a leaflet being passed around saying that the NHS were asking for input from the autistic community, and that there was a drop-in session during the day. So I spent some time writing notes, covering everything I could think of. 

I attended the drop-in session, and talked about various aspects of autism. Things went quite well, and I felt that I got heard. They also kept my notes, which made it feel worthwhile.

(The autism group’s organiser arrived at the drop-in session just before I left, so she never got to see my verbal or written contributions. I imagine she thinks I’m dull and quiet, and do not have much to say. However, my quietness often stems from politeness, and an unwillingness to interrupt others.)

Special Guest

A ‘special guest’ came to the support group another week — someone from the NHS. All the female members of the group sat with her, and dominated the conversation. From time to time, they’d ask the rest of us if we wanted to say anything, but literally seconds later they would resume talking — before we’d managed to think of a reply.

In the end, I didn’t contribute a single thing that night, and I left 15 minutes early. (I heard one of them mutter something about the fact that I’d not said anything all night!)

The experience was the complete opposite of the drop-in session I’d attended a week or two earlier. Rather than feeling valued and useful, I felt like my opinions were worthless to them. (It’s funny how I feel rude interrupting people or taking over their conversations, but yet I tolerate it when other people do it to me.)

That week was the last time I ever attended. To this day, the organisers are completely unaware that I was upset about anything. The disruption caused by the Coronavirus lockdown has probably made it less obvious too.

Closing Thoughts

Even though there are a couple of people who I will miss, I will not miss the way I felt when I went to the group on some of those occasions. I can do without experiencing negative feelings and situations that resemble parts of my childhood.

I hope that if you attend a support group, that you will have a better experience than me. After all, it’s entirely dependent on the mix of people, and on the personalities of the people running the group. So there’s a good chance that things will go well for you.

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  1. Thank you for sharing your experience although it is a shame you did not find your place within the group it is still an achievement that you reached out to them.
    I feel the negatives of Autistic groups could be ,that although we seek to find others that understand us and potential friends we are all of course so different in personality.We all meet hundred of people throughout our lives yet only 'click 'with a few
    I have had a similar experience. Attending 3 meetings, the first I arrived with the co coordinator who moved tables to chat with friends and I was left on my own, later finding myself almost counseling a distressed parent of an adult autistic son. The second, again despite attempts at chatting no one took me up on an actual conversation and the third I found myself more welcome however overloaded with the pressure of joining campaigns and committees.
    I do know several people who find such groups invaluable and like you, wish them well in finding a place where they fit in and feel valued . For me though not so much .

    1. I'm so sorry that I didn't respond to your comment — several comments have only appeared in the admin screen tonight!
      It's good to know I'm not the only one who had a difficult time. But I'm sorry that things didn't work out very well for you.

  2. What a horrid experience, I think you were wise to leave. You are right, group leaders/organisers make or break a support group and seems clear that the leaders of this group are sadly untrained especially in group dynamics and basic self awareness.

    1. Thank you so much for commenting, I really appreciate your kind words.
      Something odd seemed to have happened with my setting here because I didn't get any notifications about comments, and it's only now — 18 months later — that I've seen them all.

  3. I joined a Facebook group for adults with autism. I quit if after a few days. It was too depressing. They were all writing about how miserable and wretched their lives were and asking for suggestions. Somehow, it doesn't seem logical to me to ask for help from people who were pretty messed up themselves. I've never looked for an adult group to attend in person. I attend church and am friends with many people there. They all know that I'm different and accept me for who I am. I lost my husband in February. He was also on the spectrum. That explains why we got along so well. We were very much alike. At least two of my four adult children are also on the spectrum. The older one is an accountant and recently got married. His new wife is very quiet. I don't think she's on the spectrum, but I would have to get to know her a little better to determine that. My youngest son has childhood disintegrative disorder, or Heller's syndrome. It's not a diagnosis in the DSM 5, but I don't care, I'm sticking with it. He tried working once, but it proved too stressful for him. He has been on disability benefits since he was 18. Now. He gets benefits under his late father's account. He's doing okay financially.
    As for me, I don't think I'm dealing with grief anymore so much as loneliness. I've never lived alone before. I have several friends, but no close friends. It is difficult.

    1. I'm so sorry to be incredibly late replying to your comment — I didn't get a notification about any of the comments. Hopefully that is now fixed.
      I'm very sorry to hear about your husband. I understand the loneliness aspect of it too.
      It's great that your church friends accept you for who you are.
      I know what you mean about the Facebook groups...


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