Isolation & Self-Help After an Autism Diagnosis5 min read

 

I have lived my life as an Autistic. I only found out aged 46.

I was relieved because it gave me so many answers to ques­tions that had always plagued my exis­tence, but it left me vul­ner­able.  I was sud­denly without armour, a bundle of raw and unpro­tected nerves.

An Autistic’s life can be very lonely.  Mine was.  I never fit in, and I didn’t know why.  I have been lonely all my life. I have severe social anx­iety, so I dis­tance myself from people as much as pos­sible.  After real­izing I had autism, I felt even more dis­tance, and the fact that I was so dif­ferent from everyone else came to the fore­ground of my con­scious­ness.  At first, I with­drew into deep iso­la­tion.

The neu­rotyp­ical (NT) world has always pun­ished and excluded me for being dif­ferent.  Sometimes, it’s weird looks.  Sometimes, it’s sus­pi­cion that I am somehow dan­gerous.  Sometimes, it’s bla­tant bul­lying and exploita­tion of my weak­nesses.

My first break­through into real­iza­tion hap­pened in coun­seling when my ther­a­pist said she thought I might be autistic.  I went to the psy­chi­a­trist and asked for a diag­nosis, and the process took  nearly a full year.  The wait was long and full of uncer­tainty, a feeling dif­fi­cult for autis­tics to tol­erate.  It was also dif­fi­cult to rely on the time­line and the dis­cre­tion of someone I didn’t know for some­thing so deeply per­sonal.

Finally, the results were in.  I passed with a glowing report.  A for autistic.  Once I found out that I was autistic and started to under­stand why I was as I am, I real­ized how much the rest of the world is such an odd place.

alone branches bridge bright

Not liking being around people or feeling safe around them, I reached out to online autism groups and found very useful infor­ma­tion and a lot of friendly people to chat with who were also autistic.  There, I made a few very good friends.

I then came out as autistic to the land­lady and a few of the local drinkers of my favourite quiet pubs.  They accepted me for who I am.

I wanted to meet other autistic people to feel that con­nec­tion and relat­ed­ness in a social group where people under­stand me and the strug­gles I face.  Living in Wales, I have access to sup­port from the Integrated Autism Service, but I wanted a local, informal sup­port and social group.

There isn’t one.

At first, I was dis­cour­aged.  It’s easy to feel like a per­petual victim barely treading water when you’re autistic.  People don’t believe your dif­fer­ences or make room for them if they can’t see them.  If I were blind with a walking stick or in a wheel­chair, I think the world would be more sym­pa­thetic.  But, the only dif­fer­ences they can see are in my behav­iors, speech, and man­ner­isms… and to them, it just reg­is­ters as dif­ferent.

Different from an adult male equates to threat­ening for most people.  I’ve seen many times in the autism groups where people have been harassed by offi­cers or kicked out of stores because others could read that they were dif­ferent.  I’m afraid to take ini­tia­tive or to put myself out there because I have been hurt and rejected so many times.  It’s hard to think of your­self as any­thing other than defec­tive, broken, or ridicu­lous when the world treats you that way.

But, I had spent enough of my life not wanting to be alive and not truly living.  I’d spent enough time sticking to the shadows and trying to be invis­ible.  I wanted to do some­thing for other autis­tics out there who might have been feeling the way I was.  So, I did some­thing that was ter­ri­fying and unset­tling and felt like an enor­mous risk– I asked the Integrated Autism Service (IAS) to help me create a social group.

I have the autism-friendly pub as a safe place, with me being the only known autistic there.  They don’t mind if I just sit in the corner.  They accept that I join the con­ver­sa­tion when I am able and don’t think I’m being rude or unfriendly if I don’t par­tic­i­pate more, and they realize that just being around them is my way of social­izing as much as I can.  It’s a great com­fort to me to be around people who are accepting.  Even when we’re not talking, it feels like we are com­mu­ni­cating some­thing more honest and real than words and lan­guage.

At this pub, I will hear some­thing that feels like a topic I can con­tribute to and join in the con­ver­sa­tion for a while; then, I get worn out and sit down in my corner again.  No one there penal­izes me for this, and they are even pro­tec­tive of me when new people come around.  Because they nor­malize and humanize me and show tol­er­ance for my dif­fer­ences, it sets a social example for other people to do the same.

I fig­ured that since the staff and reg­u­lars had been so accom­mo­dating to me, the pub would be the per­fect place for this kind of meeting.  The land­lady enthu­si­as­ti­cally agreed to host a group on Tuesday after­noons (the qui­etest, most-autistic friendly day) for free.  Even better, she has also declared the pub a “safe space,” some­where autis­tics and anyone else needing help can find a safe space to hide, recover, find help, or be served with respect and accep­tance of their dif­fer­ences.

It’s a win-win sit­u­a­tion.  The pub will have more busi­ness on their slowest day, and we autis­tics can have a quiet place here we can adjust lighting, music volume levels, and seating arrange­ments, etc. without feeling that we are too much of an incon­ve­nience for the staff.  The first meeting of the group will be in mid-January.

adventure backlit dawn dusk

Here is a call to my fellow autistic tribe: if some­thing you need is not avail­able, then you can stand up and find a way to do some­thing by putting your­self out there and trying.  You might fail at first, but you will never be happy if you aren’t putting your­self out there and trying to do some­thing to make a dif­fer­ence.

It’s not healthy to be alone in this world, and your courage to make a dif­fer­ence may have a huge impact for someone who really needs to find a place of sup­port and the cama­raderie of other people who speak their lan­guage.

I will have sup­port from the IAS to start the group, but after it’s estab­lished, I will be run­ning it on my own.  Once I know more about run­ning a group, I will be here to help others start up their own groups.

Each small step for­ward is a step in the right direc­tion– towards progress and away from iso­la­tion.  I’m going to be taking a small step, and I hope some others out there will find help from others, or me, to take a small step in the right direc­tion, too.

7 Comments

  1. This sounds great! Where in Wales do you live? My sons live in Cardiff and my daughter lives near Swansea so if the pub is any­where near those places, I might just drop in.

    1. This is very encour­aging stuff. I am in a sim­ilar sit­u­a­tion (in my 40s, recently diag­nosed) and have thought about attending or even founding such a group but haven’t yet mus­tered up the energy/courage to do either. One of the prob­lems where I am is that English isn’t the first lan­guage spoken, so I always feel it would be better suited to someone bilin­gual — but the chances of someone like that coming along are slim.

      I guess there are always rea­sons not to do things…avoidance is my default…especially socially. Much harder to do what you have and set some­thing up, so mas­sive respect for doing that. At the moment I’ve found online sup­port is most suited to my needs, but I think you’re right…we miss some­thing but not get­ting our­selves out there…it’s not good to be con­stantly alone even though we are nat­u­rally suited to it. It becomes a bit of a vicious circle…we don’t get views that chal­lenge our own and we don’t get pos­i­tive rein­force­ment from putting our­selves in healthy social sit­u­a­tions. Social con­fi­dence is some­thing we need to build and con­stantly work on in order to func­tion in the world. I used to chal­lenge myself more on that level. It cer­tainly would feel good to con­tribute pos­i­tively to build some­thing, rather than always being on the other end searching for ser­vices that don’t exist or don’t suit our needs. Good luck with your endeav­ours!

      1. I will post another article later about how set­ting up the group was, the vic­to­ries and the pit­falls etc. After I have got the group run­ning I will also be avail­able to advise others to do sim­ilar things if people out there need it.

    2. The pub is in old Cwmbran, from Cardiff city centre jump on the X3 and the nearest stop is about 2 mins walk to the pub (it’s called the mount pleasant) The meet­ings will be on Tuesday after­noons at 2pm starting the 13th of Jan.

      1. Great, let me know the name of the pub and I might just drop in one day.

  2. Highest respect to you, Well Done.…..My son has also been diag­nosed as autistic at age 46. He’s a high func­tioning autistic with accounting being his prin­ciple talent. How he has man­aged all these years amazes me. As a scool kid he was secre­tive about events in his life. He refused to talk about daily life and it was extremely frus­trating for me because it was impos­sible to influ­ence his life or to guide him. But, he made it thru school, thru his mum and mine’s divorce, thru uni­ver­sity, and to secure an accounting qual­i­fi­ca­tion which took him to working in america.

    Now tho, at 46 he is unem­ployed, finding it impos­sible to nav­i­gate the inter­per­sonal skills required at a high cor­po­rate level. It’s a new chal­lenge for him that he does not want. And, once again I am pow­er­less to help because I live in the UK and he is in america. Thank good­ness for this internet and my dis­cov­ering this site. More than my eyes have been opened. I love him to bits. And like you Leonardo, he’s a hero.

    1. Viv,
      I’m glad this article has helped 🙂
      Together and with under­standing from the out­side world Autistics can be stronger and pro­vide much needed sup­port. This is why I write for this site.
      I wish and hope your son can sort things out soon.

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