Having just fought back an oncoming panic attack and sat in a booth at the Abington Park Cafe, I found myself watching on in amusement as my mother and Chloe’s aunt, who I have rather embarrassingly (despite the whole supposed photographic memory) forgotten the name of so let’s call her Mandy, engaged in a conversation that I could only see as comparing notes!
‘Did she get through school?’
‘How is she with relationships? Can she handle them?’
‘Are you happy with the help she’s received?’
‘Who first mentioned Autism to you?’
‘When was it you noticed she was different?’
My mom’s reply to that particular question?
‘Lucy has just always been…Lucy’.
I couldn’t tell you why, but I liked that phrasing.
I also won’t share with you who asked which questions exactly, because from an outsider’s perspective some may seem forward, almost rude, for people who had only known each other twenty minutes.
Watching my mom however, I couldn’t help but smile a little as the realisation hit me… She’s never had the opportunity to talk to other parents, guardians, carers of life with an Aspie. There was an excitement to the conversation that resembled the moment you find out someone you know is as obsessed with the same television programme as you are.
I took that time to take in the surroundings. Being a warm, sunny day most patrons of the cafe had taken their seats outside, making it so the only people indoors were our group. Behind me, in the end booth, sat five people including the group leader, who I believe I named Gina for the sake of this blog, and one other newbie named Ryan.
Ryan was without a guardian or carer, I wondered perhaps that is why he stayed close to Gina. He hadn’t ordered anything for lunch, not even a drink, and was silent unless spoken to. I don’t claim to know how he felt nor do I claim to know what he was thinking, we had only said a few words to each other during lunch, yet I saw myself in him. More than in anyone else at the group. If my mother hadn’t been present, I too would have looked to the group leader and kept close, staying quiet unless spoken to.
Gina had spent the entire duration of lunch on her phone, taking what was clearly a personal call. Something that bothered me straightaway. Shouldn’t she have been available for the people attending the hang out? Ryan was quiet but even I could see he didn’t want to be sat ignored for the whole meeting. One of the young men at her table kept trying to talk to her, she would simply hold her hand up to him. Shushing him. I myself had a couple questions but was put off asking. Wasn’t that what she was there for? To support the group? To help ease the newcomers into the large group?
Congregated outside after lunch, it was only then I saw just how large a group it was… I hadn’t realised that the majority had eaten and spent lunch outside the cafe. Instructed to sit and join them as there would be a form to fill in, I placed myself on the grass just outside the group. I felt overwhelmed. The weight in my chest had returned.
There were clear cliques in the group, everyone seemed to have their place. Their people. I fought back tears. At the time I was confused by this moment, I assumed I was scared… Looking back I know those tears that so nearly came to be were because I had no idea how to integrate myself here. I couldn’t see where I would fit.
I remember looking to my mom, she was sat on a chair next to me and still chatting away to Mandy and Chloe.
‘She can talk to anyone anywhere and immediately fit’
Having felt the weight of my own expectations begin to pull me down, I stood.
‘An outsider in a group of outsiders’
My mom offered me her chair, but knew I needed to stand and pace. It was something I’d done for years before and still do now 9 months later. It was and is, what I hope, a subtle way of trying to expel negative energy.
I noticed Ryan was standing too, on the outside of the group as I was.
After five minutes of pacing, Gina passed around those forms. They were only a survey for the NHS. I had filled in a few previously when attending sessions ADHD & Asperger’s Syndrome team, it asked questions such as ‘how do you rate the support you have received from your care worker?’. I stated the fact to Gina, yet she refused to pass me the survey until she had explained it all. Making me feel stupid to be honest. I understand, some may need explanations but I had no need for one.
As I leant over a table to fill in the survey, I would read out the questions to my mom. Something we enjoy doing is playing ‘what would I have answered before I learnt about Autism?’
My favourite one on this particular survey is ‘Would you recommend this service to your friends and family?’
No. I wouldn’t. I don’t have any family or friends that have ADHD or Asperger’s Syndrome hence I wouldn’t recommend the team.
Of course, as an educated adult with Autism, I understand it’s a rhetorical question therefore I always tick definitely.
Gina interrupted myself and my mom playing our little ‘what would Lucy have answered 10 years ago’ game, with the rather intrusive manner of taking my survey from me to see how I have answering.
‘That isn’t how you answer Lucy, that question means ‘would you recommend our team IF you did have people in your life who are diagnosed too. So tick yes’.
And then she held the paper in front of me and pointed to where I then had to tick yes.
Now, I have a bad habit that if you treat me like I’m without understanding and awareness, I will wind you up. I can’t help it. It’s a way for me to take back control I think… When you have the label Autistic you are treated a certain way. Regardless of the fact all people on the spectrum are affected differently.
I ticked no. Then listened as she continued to tell me why I was wrong. By the time she finished, my answer was genuine.
‘If I did have friends and family with Autism. There is no way I would recommend this service’.
And with that I said to my mom I wished to go home. This group was not for me. Yes, I did make the decision to play Gina and that may seem a bit wrong to you, but I knew this woman on this day. I say this day because perhaps I met her on a bad one, what I saw was someone who spoke down to us, ignored us, was quite rude and without any idea of the fact everyone with Asperger’s presents differently.
Though my mom agreed with me regarding Gina, she urged me to stay and join the walk around the park. That though the group leader was not what I expected, everyone else may surprise me. I agreed and thankfully so.
The time arrived for the walk around Abington Park, and we started with a stroll through the aviary. Amongst the birds, and stopping to watch the budgerigars flit about their enclosure, came my peace of mind. With peace of mind arrived my confidence. I was happy and content just wandering, watching the birds. Everyone else disappeared, everything fell away.
‘I used to have a couple of budgies’
I looked, slightly startled to find myself distanced from my mom but looking back I believe that’s what made Ryan finally talk to me.
‘Me too!’ I replied, ‘one was blue and one was green so they were rather imaginatively named Sky and Grass.’
I remember clearly thinking that the appropriate thing to say next was turn the question to him. I was supposed to ask him the name of his budgies. Instead…
‘So what do you think to this group?’
Then, it happened. I felt the same as someone else, at a moment I needed it most.
‘I don’t really know, I mean this isn’t my thing I don’t…’
I saw him flinch. Then he said the best thing I heard that day.
‘I really don’t mean to offend as I am one of these people but I don’t fit here. I don’t act typically autistic, I don’t want to because I work hard at hiding it. I sound horrible’, he said.
He didn’t sound horrible to me, he sounded like me. After telling him this, he became a different person. Relaxed and chatty. We talked for the duration of the time in the aviary, both finding common ground in love for animals. Especially dogs.
‘There’s no pressure from dogs, they like you for who you are’.
We were also both led to join the group after being disappointed in who we thought were friends.
We had also decided not to attend May’s hang out as it was dinner in a buffet restaurant, and our anxieties over this were similar. So we made a promise to each other to meet at June’s. Bowling. We said our goodbyes (he was to be at work soon and I had fulfilled my promise to give the meeting another half hour) and that was it. I was feeling positive, I got what I needed from the meeting for today and was ready to go home.
My expectations for this meeting were high, my fears were real and unfortunately realised… but I did get time to talk to someone who felt as I did in this group.
‘An outsider in a group of outsiders’
It meant a lot, and I was ready for June. I had Chloe’s number, I was hoping to see Ryan again, I had hope.
I never made that June meeting. My nan was only a few days from death… And after her death my mind wasn’t on anything else. I had forgotten all about the group for a while there.
I wonder now if Ryan had gone, if he was disappointed. I wonder what if he hadn’t shown up and wondered whether I was there?
I haven’t made another meeting since, like I said my mind has been on other things… but I think I’m ready to give it another go. What have I got to lose?
*I did not take and do not own the photographs shown in this post