When thinking of posts to write about autism this month, I tried to think of the things that are common to all parents of all ASD children. It’s true, we all have our varied experiences and these can be so totally different, just as life on the spectrum can be. I considered doing a post about things not to say to an autism parent but a lot of people have been there before and done a good job of that. I also like to keep things positive, as you can see from the post I did about “5 Amazing Things About Having A Child With Autism“.
So this month I’m talking about something we all have in common; fear. Just as our experiences are all different, so are our fears but I would wager that not one of us doesn’t have at least one or two listed in this series of posts.
I’ve spoken before about intolerance and that goes hand-in-hand with a general societal ignorance of what an autistic person behaves like. This can include the types of behaviours they exhibit, what constitutes ‘normal’ or otherwise usual behaviour, what behaviours are ‘high-risk’. Often, in a public setting, an autistic person may react in an atypical way which can cause alarm to other people. This would be challenging in itself but, as parents of autistic children, we constantly worry that these situations might escalate to a point where someone may wrongly choose to intervene or the autistic person may get hurt.
It’s important to me to highlight how terrifying these scenarios can be for parents of autistic children but it’s also important that this be framed in a series about fear because it shouldn’t be construed as a ‘look how risky autistic people can get’ because what this is really about is the fear of everyone else. How we constantly worry that our children will put themselves in harms way through pure misunderstanding; both theirs (of social norms) and society’s (ignorance of autistic behaviour).
Refusal to engage/respond/cooperate
When in social situations, people often regard autistic children as quiet or unemotional. The truth is obviously more complex but broadly speaking autistic people are frequently anxious in social situations due to the highly unpredictable nature of most interactions. The panic about saying or doing the wrong thing often leads to an overall introverted response. This isn’t the whole story though.
Even without social anxiety, autistic people do not respond in a typical way to being spoken to. This can often be wrongly interpreted as the person being rude. When addressed, an autistic person may not respond or acknowledge you immediately or at all. They may not look at you. They may not meet your greeting with their own. This can all be entirely normal behaviour depending on the person. Many autistic people require additional processing time to figure out how to appropriately respond to being addressed. Others may only respond to people they are familiar with.
This is undoubtedly unusual for people who maybe don’t have autistic friends or look after autistic children. The refusal to look around or return a greeting is too often interpreted as rude or standoffish behaviour and sadly this can put autistic people in bad situations.
This atypical behaviour also includes responding to verbal commands and it can be particularly scary when this is a command given by an authority figure i.e. a police officer. A neurotypical person knows that when an authority figure gives an instruction, it is usually followed quickly. An autistic person would not necessarily react immediately. They may not recognise the social rules that dictate how to respond appropriately. They may not appreciate the seriousness of a situation. They may require additional time to process the information properly. All of these things can be interpreted as ‘refusal to cooperate’ and that’s incredibly scary when you consider how that situation might escalate.
This video by the National Autistic Society highlights what it can be like for a person on the spectrum to deal with these kinds of interactions.
The big fear, at least for me, is that one day Morgan will have to deal with a serious situation where the people involved don’t know he’s autistic. That he will act in a way that is misinterpreted as rude and get into trouble. This Guardian article highlights how autistic people are often poorly treated by the police, due to a lack of understanding but it isn’t just the police that worry me. There are any number of social situations that can get out of hand if people lack awareness of autism.
This is very similar to what I was just saying above but when you take into account how many autistic children use language, it isn’t always easy to understand, can be easily misinterpreted and can sometimes be downright offensive.
This is another example of how autism can be two sides of the same coin. I love that my son is what a lot of people would call ‘a straightshooter’. He doesn’t mince his words and will tell you bluntly what he thinks. I think this is a great thing about him. You know when you’re dealing with Morgan that he’s not dressing anything up for you. It’s just all as it comes. This is quite typical for autistic speech. Neurotypical people do all sorts of things to their speech and conversation to make it more palatable or acceptable to the receiver. Whether this is bending the truth or omitting certain facts, it’s a skill that an autistic person doesn’t develop naturally. As a result they will often be brutally honest. If you want to know if your new haircut looks good, ask an autistic kid. They won’t sugar coat it for you.
The thing I love about this aspect of autism is that some of the things Morgan says are truly beautiful because they always come straight, unfiltered from the heart. That’s not to say he always tells the truth but it’s not in his neurology to bend the truth as a matter of course. I love that he can walk into a tense or sad situation and crack a joke. I love that he can openly express himself without worrying about making it fit properly for everyone. I’m over-romanticising it but, for me, there’s a real power and freedom in that.
Sadly, this can also work against him. Those rules have been built up to keep friendly discourse flowing naturally and the blunt approach doesn’t always work for everyone. We’ve had moments where we really worried Morgan would upset people (grieving people, usually) or would offend someone. He’s been very fortunate to have a lot of understanding people around him but it does make me worry for the future. Eventually I may have to send that unfiltered heart of gold out into the world.
Aggressive behaviour & physical violence
One of the typical behaviours exhibited by some autistic children is a tendency to easily lose their temper and lash out physically. This doesn’t mean that autistic children are unstable or inherently violent. In very young children, violence is often the result of being totally unable to communicate their needs and getting frustrated. Sometimes, being unable to verbalise if something is wrong, if something scares you or is uncomfortable then striking out physically can feel like the only way to stop something happening.
This physical violence is often the result of being very afraid and it is when our children are lashing out physically that they need us the most. For many autistic children, they often communicate tons of signs of distress before becoming physical. These can include frowning, refusing to engage in activities, over-stimming, moving to a quieter part of the room or out of the room they’re in. It is when all these subtle signals are ignored that an autistic child escalates to physical violence.
Sometimes it’s inescapable. When Morgan hasn’t had enough sleep his ability to maintain his own emotions becomes greatly diminished and he can have a much worse day the next day than if he’d managed to get a proper rest. Changes to routines can also make him less stable and more prone to physical outbursts.
The reason this is scary to us as parents is because we see a child who is scared and needs our support to feel okay but other people are not always so understanding. Other people may just see a violent outburst. This could be other parents, teachers or just the general public in a busy shopping mall. If the autistic person is very young this may not seem altogether out of the ordinary, just another tantrum that a parent can control with a little physical restraint. Imagine if the person is 13 or 14 though. Suddenly it doesn’t look so normal and the person can be a risk to others and themselves. A stranger that doesn’t know the situation may interpret the child as hostile or dangerous.
This is one that can become very serious indeed. Autistic children can have a tendency to run off. Whether it’s a response to a stressful situation or just for fun, these instances of ‘bolting’ can be very dangerous and have resulted in the deaths of autistic children. Very few children understand the risks of running away and when an autistic child does it, they are ill-equipped to ask for help or to navigate their way to safety. The most common cause of death in autistic children is, perhaps unsurprisingly, drowning. Here’s some examples of these sadly too frequent accidents:
- Parents of drowned boy with autism suing Saskatoon Public Schools
- Half of All Autistic Kids Will Run Away, Tragedy Often Follows
- Autistic child drowns in pond in Hinesville
- Autistic Boy Drowns In River While School Marked Him Present Three Times
We’re lucky that Morgan’s predilection for running off has so far been quite minimal although he did once do it at a busy camping convention in a massive crowd of thousands of people. That was a terrifying 5 minutes which he found absolutely hilarious.
Even though he doesn’t often run off, his sketchy understanding of personal risk is always a worry to us. He doesn’t always grasp when he’s putting himself in a dangerous situation and that’s something we’re always working with him on.
We’re really keen to hear from you and hear your stories of any experiences. Please let us know in the comments or contact us on social media.