Five Things That Scare Parents of Autistic Children: Part 1: Intolerance

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 today I’m going to talk 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 on the list that follows.┬áThe title of this post is a bit of a misnomer. It says ‘five things’ but in reality this is five groups of things. The number of things that scares the parent of an autistic child is likely too large to keep track of. Here’s my broad selection but please do get in touch and let me know if you think I’ve missed any.

Note: this was initially supposed to be one big post but it has taken on a life of its own so it made sense to break it down into individual posts. This one is specifically about intolerance.

Intolerance is a big deal for me and (like autism, ironically) it can present itself in a wide variety of ways.

Society is, on the whole, set up to work for the majority and the majority of people don’t have autism. Many people have no contact with it, no experience of it and so when they encounter it, often respond negatively or in a way that can be really unhelpful. I try not to get too judgemental of those that are clearly trying but many have no reason to and their attitudes can range from irritating to downright deadly.

Casual slang use of ‘autism’/autism as a slur

This one really grinds my gears, especially online where it has become a kind of slang for people who appear easily angered. It upsets me when otherwise seemingly nice people, including other gamers and YouTubers use the term ‘autism’ to mock someone. It diminishes respect for what many don’t seem to realise is an actual condition and increases the likelihood that autistic people will encounter mockery and derision in their daily lives. Here’s some examples fromYouTube:

intolerance

As you can see there’s no shortage of people who too easily associate the term “autism” as a type of frustrated rage fit. This scares me as a parent because it feeds the narrative that autistic people are angry, aggressive and unpredictable. A lot of people in the autism and wider disability communities are uncomfortable with the word ‘retard’ being used as slang. I’ve grown to dislike that word too but using the word ‘autism’ just seems so much more targeted at people with ASD.

Autism and association with school shootings

Now, we’re lucky enough to live in the UK where school shootings are unheard of since Dunblane back in 1996. This is mostly due to the fact that our country doesn’t share the love affair with weaponry that we’ve seen in the US in recent years. Nevertheless, my heart always sinks when there’s a school shooting in America as it’s usually only a matter of time until someone uses the ‘A’ word to explain how this cold, unfeeling monster came to take so many lives.

intolerance

Again, as with the flippant use described above, this feeds into the subconscious of people who engage with that news media. It helps support the notion that autistic people are emotionless robots with no ability to feel or to understand right from wrong. The opposite is in fact true and many autistic people actually describe themselves as feeling too much. They are also more likely to be stringent rule followers, as rules help create an ordered system on which an autistic person can rely for familiarity.

More importantly, this use of ‘autism’ in the news, associated with this kind of violence creates a subconscious, unspoken fear and mistrust of autistic people, not just in the country where these shootings happen but in every country where this attitude towards autism is spread. I have no doubt that when news of an ’emotionless gunman’ with ‘possible autism’ is on tv, children in schools who already experience bullying due to their autistic nature will be targeted. This makes me scared for my son trying to function in a social situation like that. A situation where he’s likely to be attacked for his very nature because of something that happened thousands of miles away.

Staring and judgement

As a parent of an autistic child, you develop a really thick skin. You are much more likely than any other parent to find yourself in a very loud, very public situation where your child is in distress. While you can learn to avoid those situations, it’s inevitable that you’ll have to deal with them eventually. They are often unpredictable and can strike without warning.

My most distressing one in recent memory was a couple of years ago when I had taken my son into the Disney store in the big mall in the city. He was coping particularly well that day so it didn’t seem a bad time to try and brave the mall in search of a new toy. He was also at an age where he loved Toy Story so it seemed a good choice for him. We had picked out something and were waiting in the queue when it quickly became too much for him to deal with. It could have been the heat, the crowd, a bad smell but something set him off and it went south FAST.

Before long I was sat on the floor of the store with him wriggling and screaming in my arms. This was before we’d really learned how to help him when he’s having a meltdown so all I could do was hold him and hope that he was able to calm down. Eventually we were able to get up and move somewhere quieter (having abandoned the purchase. We got it later) but until then we had been sat in the middle of a Disney store having a full meltdown.

Perhaps the worst thing was the reaction of the other people in the store. Nobody tried to help. Not a single person tapped me on the shoulder and asked if there was anything they could do. What they did do is what always tends to happen in these situations. When you’re making ‘a scene’ in a busy shop people mostly ignore you, but the ones that don’t react in one of two distinct ways. Many of them just stare. They’ll stand about 6-8 feet away and just gawp at the scene like it’s some sort of street theatre put on for their entertainment. That’s quite hurtful in the moment because they can see you’re having a hard time but are choosing to spectate. The really hurtful ones though are the ‘tutters’.

intolerance

Don’t get me wrong here, I know that to most people an autistic meltdown just looks like an unruly kid having a tantrum. That doesn’t preclude those people from showing some human compassion and choosing to not pass judgement on the parent sat on the floor with their screaming ball of tears. Nevertheless, any public meltdown will undoubtedly attract the attention of at least one tutter who feels the best input they can make at this stressful time is a judgemental clicking noise. To them, this breach of public order is the direct result of your abysmal parenting skills and probably because of all those buzzy machines they play with these days. They are, strangely, almost always really old white ladies but the position can often be filled by someone of any age or gender or race. Intolerance, it seems, is universal.

Abuse, assault and accidental murder

This one may seem rather strong but it is a very serious concern for parents of autistic children.

Our children are incredibly vulnerable. It’s fair to say that all children with disabilities experience increased vulnerability but autistic children are uniquely vulnerable to misinterpetation. That is to say, through a lack of social understanding, they put themselves in bad situations. They misinterpret the intentions of others very easily. When upset they can appear scary and aggressive. Most importantly, when figures of authority try to engage with them, they do not react in a typical way. There in the moment they don’t appreciate that their fear and anxiety is manifesting itself in a way that can make their situation worse.

These are all incredibly difficult to manage but even moreso in a society that can’t easily tell when a person is autistic and how to deal with that person appropriately in a way that will help them calm down.

In 2016, Danielle Jacobs, a woman with Asperger’s, called the Arizona police as she was in a state of meltdown and felt that she was unsafe. Those police arrived and, because Danielle did not comply with requests to drop a knife, they shot and killed her at her home. Danielle had recently gained notoriety online for a video she had posted to YouTube showing her dog helping calm her when she was in meltdown and attempting to hurt herself. It was an emotional video, all the moreso now, given her unfortunate treatment.

Again in 2016, Miami police officers were called to a scene of what was reported as a ‘disturbed man armed with a handgun’. The man was actually autistic 26 yr old Arnaldo Rios who had wandered away from his group home and was sat in the street holding a shiny metal toy truck.. His carer, trying to diffuse the situation, was shot by the attending officers but thankfully not killed.

There’s also the case of the young autistic girl who was kicked off a plane for making the pilot feel uncomfortable.

intolerance

Now it’s only fair to point out that these examples are all in the US. Perhaps their relationship with autistic people is particularly bad due to the level of awareness many people in the US have about autism. I’m not qualified to say if we’re any better here, we’re just less likely to find ourselves in a position to shoot at them. Suffice to say this is why I remain incredibly sceptical about taking the family to Disneyland.

One factor of many autism diagnoses that is worth mentioning is the fact that a lot of autistic children are non-verbal. This means that as parents we place a hell of a lot of trust in those adults who look after our child. That trust is not always well founded and through their lack of ability to communicate effectively, autistic children are vulnerable to abuse or mistreatment by adult caregivers. This vulnerability to abuse can extend all the way into adulthood and even autistic adults are often unable to defend themselves from abuse and assault.

Here are some links to some examples of where this has been reported.

These are just a few examples but it remains a strong concern that our children will one day be in the care of a person who does not respect the trust placed in them and that our children may end up in a bad situation and unable to communicate well enough to raise alarm. We’ve personally been lucky so far to have had some really great teachers, therapists and caregivers but it’s always going to be a worry, especially as our son moves into new schools with different people.

That about wraps it up for part one. If you managed to get through all that then thanks for persevering. These articles are being written as part of the run-up to World Autism Awareness Week which is particularly important to us here at DadGeek. Join me next time when I’ll be talking about how we’re scared of the ‘failure of support’.

We’re really keen to hear from you and hear your stories of any experiences that you may have had where your autism or that of your child has been met with ignorance. Please let us know in the comments or contact us on social media.

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