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Autism Awareness Week 2021

Many of Guideposts’ services support people with autism, who are a valued part of the Guideposts community. Autistic people have varying and complex needs from 24-hour care to simply needing clearer communication and a little longer to do things. So it’s not a simple label that tells us who a person is or what a person’s needs are.

To mark World Autism Awareness Week we spoke to some of our community to find out what it’s like to live with autism and what autism means for them.

Nigel is a member of Guideposts’ Friendship Scheme in Hertfordshire, and usually attends the weekly Fit for Fun and Art Group and as well as the scheme’s outings and events.

What does Autism mean for Nigel?

Communication

Nigel’s autism means he finds it very hard to communicate, so we spoke to his mother.  The difficulty in communicating can have every-day challenges of course, which we find ways around, but it becomes particularly important when he can’t say that someone is doing something he doesn’t like.

Social Connection

Despite this, Nigel knows what is happening around him. He feels connected to people and spending time with friends and family means a lot to him. Even if he doesn’t join in a conversation, he will want to say hello or goodbye to each person by name, and will remember them the next time they meet.

Routines

Nigel likes routine and finds change difficult.  This year has made it very challenging for him because all his usual routines had to change with no groups and day centres to attend.  His routine also encompasses annual events which usually include Guideposts’ events and outings. He has been upset that there haven’t been the usual coach trips to Brighton and Southend, and the Christmas and summer discos as he loves dancing. Even a year on, he is still sad that they aren’t happening and asks every day when his activities can start again. Although he knows about the Covid-19 virus, he doesn’t understand why it means he has to stay at home.

Nigel’s grandmother was a part of Nigel’s daily routine, living with him and being part of his family care team, but she sadly died this year. Even his mother doesn’t know if he has understood this, and whether Nigel is expecting her to come back. He still writes her notes every day, as he did when she was alive. Although Guideposts hasn’t been able to continue Nigel’s usual activities over the past year, the St Albans coordinator Jane has been supporting him and his mother Olivia, who has not only had to manage caring full-time for Nigel, but has also lost her mother.  Olivia says “Jane is the star of our family.  She really understands, and when she is there I feel safe and supported. I can ask her anything and she never lets us down.” 

Jane has been working with people with various needs including autism for over 20 years.  She coordinates the Guideposts Friendship Schemes in and around St Albans, normally arranging weekly clubs as well as a busy schedule of excursions and events across the year.  

What does Autism mean for Jane?

When someone has autism, that’s part of their individuality. When I see them, it’s their time and I encourage them to do what they want to do.

When I first meet a person, I usually meet them one-to-one or in a small group to make it less daunting to join a group.  How long this takes will differ from person to person, and groups don’t always work.  The important thing is to get to know the person and their ways.

When going out with one of our groups, mostly people are very friendly and welcoming. But individually people can find it difficult as there’s nothing visible about autism, so people may start talking and then find that you can’t understand.

Mark is a member of Guideposts Mates ‘n’ Dates and has attended our social events like the Christmas Ball.

What does Autism mean for Mark?

Socialising

I describe myself as socially impaired, meaning that I can’t spend time with friends or in a social situation for as long as I’d like before I “burn out”.  Before the Covid-19 pandemic closed services, I was making a big effort to improve my social life, joining Guideposts Mates’n’Dates and other social groups in Oxfordshire. But since then I feel that all the effort I had put into this has been lost, as these groups have all stopped meeting. 

Socialising over video calls like zoom doesn’t fulfil what I am looking for as I want to be physically with people, so I am looking forward to when we are able to have social events in person again. However I am interested in trying out Guideposts Better Connected online because the sessions are focussed on activities like art or photography, that might work better for to me.

Perspective

I find myself interested in the smallest details of things, as well being a big picture person, wanting to step back to see the biggest possible picture. I compare this to being able to zoom out with a camera to see the widest possible view, and also being able to zoom in to see the extremely detailed macro view as well. With my interest in the sciences, Covid-19 has been a particular subject of my attention recently of course, looking at both the detail of how the virus is transmitted and the efficacy of masks and sanitisers, and also how the lessons of this pandemic might inform future world events.

A different way of working

I need to do things in my own time and my own way. I can apply myself to some things very well and not others. When there has been pressure to complete a task in a certain way that doesn’t work for me, it has caused me problems at work and in my personal life.  Sometimes it has affected me so severely that I have needed to take a week or a month out to get my head working again. Since my diagnosis and taking the right medication, it’s much better than it was.

I didn’t have a diagnosis of autism until I was 40 years old, relatively recently.  Until then I lived my life thinking that I was neuro-typical and trying to conform to others’ and my own expectations of “normal”. The problems this caused led me to try and escape, moving abroad and taking drugs to help, and eventually leading to mental break-downs.  It was then through mental health assessments that eventually I took an autism test and was diagnosed with Asperger syndrome. I don’t feel autistic now, but the diagnosis means I can now put a finger on why a situation feels particularly awkward.

More awareness needed

I would like there to be more knowledge as well as awareness of different types of neurology. My autism can feel like a hidden disability, although it’s only a disability in the context of society’s expectations. I have met people who when they find out about the difficulties I have had in life, say “there doesn’t seem to be anything wrong with you”. Awareness is relatively new, and there is still a long way to go in spreading better understanding.

We all are taught not to judge a book by its cover, but when we meet someone new this doesn’t always come into practice. The book may be written in a very different way, that can be used to find better or more interesting discoveries, even if it can sometimes be harder to understand.

We encourage you to find out more about different people living with autism in #AutismAwarenessWeek.

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