World Autism Awareness Week 2021

Mikaela Paterson, Team Manager for the VALUES project, talks about her experience of working with clients with Autism Spectrum Disorder as part of World Autism Week 2021.

World Autism Awareness Week is a chance to raise awareness about Autism Spectrum Disorders. While it would be quite easy for you to google the definition and common traits of Autism Spectrum Disorders (ASD), here are some of the things I have learnt about ASD first hand over the past 16 years.

Everyone with ASD needs a different level of support

While it is true that ASD is characterised by differences in social skills, communication and behaviour, that’s a bit like saying all vehicles can be characterised by having wheels. The type and size of wheel varies greatly, as do the other characteristics of the vehicle. People with ASD vary a great deal.

We refer to autism as a spectrum disorder because while many people are able to function day to day without a great deal of support (e.g. those with Asperger’s syndrome), there are also those who need constant 1-to-1 support (or more). At VALUES we tend to support those in the middle of this spectrum, but there is still great variance in the way that people present with ASD

Autism and communication

Take vocal communication, for example. The common thread is that those affected struggle to take in social cues and may not know the unwritten rules of social interactions that most people abide to. We end up with a group of people with ASD who show very little verbal communication and another group who could talk the hind legs off a donkey (said with love, of course!).

The common tendency for people with ASD to have in-depth knowledge on their own specialised subject… means that I now know things about buses, Only Fools and Horses, trains and Harry Potter that I never knew I needed.

The problem with the latter is the tendency to interrupt others or not know when someone is politely trying to get away. The added benefit with the latter group is the common tendency for people with ASD to have in-depth knowledge on their own specialised subject. This means that I now know things about buses, Only Fools and Horses, trains and Harry Potter that I never knew I needed.

Routine and predictability are important

I find it difficult when my routine changes.

B, VALUES client

Probably the most important thing that VALUES does for our clients with ASD is provide a routine. Routine is much needed for lots of people with ASD as it helps elevate some of the anxiety they feel on a daily basis by providing predictability. Having ASD can feel like the same level of anxiety as if you’re about to sit your driving test, constantly. Imagine how exhausting that would feel! Add into that the potential for heightened senses which often accompany the syndrome and you will find great comfort in routine and predicatibity.

Having ASD can feel like the same level of anxiety as if you’re about to sit your driving test, constantly. Imagine how exhausting that would feel!

The way VALUES does this is to provide clients with a weekly timetable of sessions, with assigned staff. So this means that someone might know every Wednesday that they have football with Jim in the morning followed by art in the afternoon with Mina, for example. Unlike school they get to pick the activities they are interested in and don’t have to do anything they don’t want to.

Setting boundaries whilst also recognising individual choices

Another thing we can do is provide clear unmoving boundaries. My analogy for this is to imagine you are on a balcony and anxious as you are scared of heights. You want to hold on the barrier at the boundary of the balcony. Would you feel better if the boundaries is always in the same place each time you go to grab it or if it kept moving? Or worse still, what if there was no boundary at all?

We don’t try to be a parent or a teacher and we recognise our clients as adults with their own rights, choices and individuality, however we need to make clear what is appropriate when our actions might affect others. This means a consistent message about personal space, the difference between staff and friends and appropriate behaviour to peers (in the support setting).

ASD and the pandemic

Being stuck in my room day after day makes me angry. And I can’t control my anger

M, VALUES client

The last year has been particularly hard for those with ASD. Routines have been stripped from them without warning, in some cases more than once. For many people this lead to increased anxiety and therefore negative behaviours at home. We have helped people by providing a new routine of virtual calls or 1-to-1 walks around their local community with a support worker.

In all honesty some of my favourite people have ASD. I think the reason for this is that they are honestly themselves without feeling like they need to follow social norms. It’s refreshing!

More about VALUES

If you would like to find out more about what VALUES can do for you or your loved one with ASD or any learning disability you can visit the VALUES page on our website or contact Mikaela directly:

values@valonline.org.uk
0116 2575044

You can also donate to VALUES to help us keep running our services and providing virtual and face-to-face support to people with a wide range of learning disabilities.

Mikaela Paterson

Mikaela Paterson is a Team Manager for VAL's VALUES Learning Disability Support project. Mikaela can be found on Twitter at @PatersonMikaela or contacted via mikaela.p@valonline.org.uk.