Why is shopping & being out & about so hard?
A hot topic this one, especially around The National Autistic Society's "Autism Hour" in October each year, and one I thought I would visit now in light of Christmas and all that shopping that needs to get done.
So much of what we are trying to do with Autism Threads is about providing visual cues to help change perceptions and raise awareness. Many of these perceptions take place in the public domain i.e. whilst we are out an about shopping or enjoying a meal.
I wonder if sometimes friends I know aren't thinking...'well why take him shopping if he finds it so stressful...?' re my autistic son Henry, age 7. And I guess for autistic adults, others might think...'well, everything is online these days, surely they can just do that...?'.
Shopping, eating and drinking are things we all do as part of our daily lives and more importantly what we are able to do independently to meet our needs. If autistic children are going to grow up to lead independent lives the earlier we start to teach and assist them the better.
For adults on the spectrum there is the issue of mental health and feeling a part of a community and society just like the rest of us. And the obvious consideration that children and adults on the spectrum deserve to be living their lives to the fullest and going about their daily business, being together as families, just like everyone else.
The awareness part comes in with us understanding that children and adults on the spectrum experience life rather differently to us. So why is a simple trip to the shops so hard for someone on the spectrum?
For starters, no two shops or shopping malls or high streets are the same. People on the spectrum like to know what to expect. Once they have a visual they will take in every detail before registering the bigger picture i.e. a shopping trip, what that involves and how it feels.
They can also struggle to process too much information so explaining can be tricky. Then there are the things we have no control over:
Oh dear, the shop is closed today. X
Oh dear, the shop has changed its aisles. X
Oh dear, I forgot I need to get petrol first. X
Oh dear, there's a long queue at the till. X
Oh dear, the restaurant is full. X
Secondly, sensory overload can become too much to handle. Most people on the spectrum are affected by sensory issues.
There are the more obvious ones like too crowded, too noisy etc. and then there are specific things that can cause real and genuine fear, distress and physical pain such as bright lights being on everywhere and reflecting off all surfaces like shiny floors that make it seem as though the ground is moving.
Noises that pierce and blind such as coffee machines, electric hand dryers, scratchy carrier bags/clothes/paper/chairs. Zero bearings as in no clear start and finish.
Smells that are so overpowering eg perfumes/foods/chemicals; temperatures being too hot or too cold, windows open, aircon, no aircon. And probably tens of others I have not mentioned.
If you are not able to filter these things out that we often do without even realising we're doing it, can you imagine how difficult it would be?
My son Henry can become so disorientated he loses his ability to regulate at all, as in, begins to show signs of not knowing where his own arms and legs are in relation to his body and the ground.
The anxiety takes so much out of him he loses his sense of time, and it can have a physical impact too I am discovering ie. he gets thirsty and hungry very quickly.
All of the above can result in behaviours that seem rude, naughty, tantrum-like, ill-disciplined and that is exactly what they look like to the untrained eye.
Autism is not visually recognisable and no-one is going to ask, are they? That's like offering your seat to the pregnant lady on the train who is not pregnant!
So here's a little guide to those behaviours and what they might really mean and a little plea to stop. think. be kind. it's not always bad parenting.
- Meltdowns look like tantrums but are actually very different, hugely distressing and even painful. The person has become completely overwhelmed and cannot cope. Be patient, it will pass.
- Making no eye contact when spoken to seems a bit rude but often autistic people are unable to make eye contact and can be unaware that you are talking to them unless you say their name first.
- Not saying 'hello', 'please', 'thank you', 'goodbye'. These words are SO social and difficult to place meaning to for autistic children (adults I think have simply learnt that this is what they must say in order to get the right reaction).
- Waving hello or goodbye and standing back for others in doorways. Again, very social and not logical/functional/literal enough for some.
- Making very loud noises when apparently they can't cope with noise ?!?! This I believe is their way of using their own voices in their heads to drown out the noises they cannot control. It's helping them to regulate and gain control of their situation so please be understanding.
- Hand flapping, spinning, tapping, kicking, rocking, nodding, shaking head etc are all forms of stimming and nothing to be alarmed about. They are helpful and often used to express excitement.
- No speech at all but you hear them saying words?! Some children and adults on the spectrum are non-verbal but can say words. They simply cannot interact socially with words so they will not be able to answer questions or tell you their names but it does not mean they do not understand what you are saying or that they are not listening.
Finally, take a deep breath, absorb it all, and now add the word "Christmas"!
On top of all this, we go and add fake and real trees with all their smells and sizes and mess.
THEN we add decorations all sparking and dangling.
THEN we throw in some bright, flashing, coloured lights all over the trees that are now no longer trees really.
THEN we stick presents underneath that are covered in crinkly noisy paper so that you cannot tell what to expect.
THEN we throw on a lunch that you never normally eat where everyone has to sit around and chat for hours.
THEN we add really annoying music and louder voices.
THEN everyone wants to watch you open these gifts and say nice things.
THEN they go and do all of this in every single shop too.
And THEN after way too long a wait for the gift you wanted, it's all over.