Let’s talk about how to talk about autism
(8 minute read)
When he was small, quite often I would find myself having to explain my son’s autistic behaviour. Why ‘stimming’ (like running in circles or flapping his hands) could actually be a good thing as it releases pent-up tension and why some aspects of his development like speech might be delayed, but it didn’t necessarily mean he couldn’t understand or was intellectually inferior.
These sorts of conversations can be manageable when autistic children are smaller and within the cocoon of primary education systems and when there is often a greater acceptance of difference as nearly all kids will spin and whirl and babble nonsense as part of play at some point anyway.
But as they get older, young autistic adults (and their parents or carers) frequently face a more stressful reception when the outside world begins to expect conformity from someone who, on the surface, may manage to look ‘grown-up and normal’, but who may not be able to hold eye-contact and could express anxiety through behaviour that the standard world considers ‘odd’ or even rude.
‘It’s something that we have always struggled with, especially as Alice has selective mutism and really struggles to speak to people, sometimes even people she knows well’ shared Jayne, mother of Alice.
‘We’ve found it even harder as she’s got older and people have higher expectations of her. People’s embarrassment (which is understandable) leads to them often ignoring us completely leaving us feeling even more on the margins of society!!
Alice is soon going to get a wonderful form of support in the shape of a specially trained Dogs for Autism puppy that will provide unconditional companionship, perform taskwork and help her to manage the stress of everyday life. However, while an assistance dog can often help form a safe bridge to interaction with other people, it could also bring unwanted, albeit well-meaning attention.
How can we all help?
So how can we become more comfortable and accommodating in our interactions with an autistic person and their carers?
We’ve got together with our friends from Dogs for Autism and parents of young people with autism to compile some thoughts and suggestions. These are not of course exhaustive for every situation, so if you are interested, do read around sites like www.autism.org.uk to learn and understand more.
Primary age children
Like all children, an autistic child can also be naturally sunny, grumpy, shy or adventurous. This said, the condition does tend towards certain traits that may be helpful to understand and adapt your behaviour towards:
- Language processing is often difficult, so try to make interaction visual by showing more than telling – draw out instructions for a game for instance and make sure that language is direct and literal – don’t say that something is a ‘piece of cake’ when there’s no dessert in sight….
- It could look as if a child doesn’t want to join in with the other kids, but it may just be that they don’t know how to enter a play situation. Sometimes encouraging the other kids to invite them in is welcome, but equally they may be happier with a more structured game that has a clear beginning and end and rules that bring the reassurance of certainty.
- Meltdowns can be quite common and are a sign that the child’s senses have gone into overload and they had no other way to express themselves. Usually, the child’s parent or carer will know what’s best to do, so it may be helpful if you can reassure any other kids that the child isn’t being naughty, that the meltdown is a sign that they’re overwhelmed and need to in a quiet place for a while and they’ll be calmer later if everyone can react kindly.
It’s also important to remember that many autistic people don’t ‘appear’ autistic. Eight-year-old Isabella, recipient of Dogs for Autism assistance dog Storm, has put this into words beautifully with her poem (below) that we’ve been given permission to share.
Teenagers & adults
Emerging research indicates that young adults who are autistic mature emotionally at a slower rate than their neurotypical peers. However, this immaturity shouldn’t be taken as a lack of intellectual ability or emotional understanding, so some useful guidance from Jayne and other parents of older people with autism includes:
- Be mindful that if the young person or adult is with a family member, friend or support worker, they may prefer that person to speak on their behalf. Don’t assume that the person is taking over and not allowing the autistic person to speak for themselves. It can be hurtful to be thought of as an interfering parent who can’t let go of their adult child.
- Not all autistic people have a Learning Disability, so do try to avoid ‘talking down’ to someone who appears disengaged or unreceptive. It may be that they process things better when looking somewhere else for instance.
- If the autistic person is struggling to speak or reply to questions, avoid putting them under pressure to respond. Looking directly at the person and waiting in silence for a response or trying to prompt them will often increase anxiety.
- Others with autism may want to talk a lot. Be patient while they tell you everything they want to – invariably you will learn something new or interesting.
- Be respectful of personal space. Many people with autism find it uncomfortable to have people too close to them. Others may want to be very close to the person they are interacting with. Try to be accepting either way.
- If a person with autism comes across as angry or aggressive, don’t assume that they are being difficult. A large number of autistic people have high levels of anxiety, which may manifest itself in anger or agitation. Try to be kind and, if appropriate, give them the opportunity to express what might be worrying them.
How an assistance dog can help some autistic people
An assistance dog that has been trained in the specific needs of an autistic partner can play a crucial role in helping reduce their anxiety, gain more confidence and even show improvements to communication and social skills.
An assistance dog, for instance, can help an autistic child to break the ice and motivate them to mingle with others and feel more confident navigating school or college.
They also have the ability to sense and feel the emotions of their human partner, meaning that they can sometimes reduce the severity of a meltdown or even prevent it.
Best of all, an assistance dog can offer unjudgmental and unconditional companionship. This can help a child or adult experience friendship, perhaps for the first time, leading them to become more comfortable around other people too.
And they don’t just support the people with autism, they also help the whole family to bond and become more at home out and about in society.
Not bad work for what used to be known simply as ‘our four-legged friend’.
If you’d like to know more or want to help, please head to the Dogs for Autism page.
And if you want to provide regular support to the charity, joining trundl means that all your walks can be repurposed for good causes, including Dogs for Autism.