So what’s it like living with a child with ASD? Pt 1

posted in: Autism | 0

It’s a tricky question. It’s not often people actually ask, most are curious but too polite to ask.

I’ve been thinking about this post for a while, but didn’t really know where to start with it.

On one hand, I’d like to give all those people who think that Autism is an excuse for bad parenting, some small insight into what our lives are like. On the other, it’s a difficult thing to lay your soul bare in such a public way. I don’t want it to be from an entirely negative viewpoint, as like every families, we have ups and downs, it’s just that ours can be a little more extreme.

So I started asking friends who also have children with Autism what their experiences were like and it soon became obvious that while there are similarities, there are also stark differences. So in truth, I only know what it’s like to live with MY kids with ASD. Just as when someone tries to give me well meaning advice and tell me they have “experience with children with Autism”, I give a wry smile and think “you know nothing”. They may have met hundreds of people with Autism, but they’re all different and they don’t know how to deal with mine.

I know this, because half the time, I don’t know either.

For the person with Autism, it’s often said they live in our world but it’s like living in a foreign country where you don’t know the customs or the language and everything seems so illogical. Whereas for us, it’s like being given a computer that runs on a completely different operating system than you’re used to. That comes with a really, really complicated set of instructions, in a different language.

Our lives tend to be very ordered. Give or take, the same things happen in the same order, at the same time each day. Autism loves routine, yet I do not. There is a little leeway available but don’t ever for example, ask the boys to put their shoes on before they have breakfast. The resulting meltdown will throw your carefully planned morning routine completely out of the window. It is not what they usually do, so it cannot possibly, be done in that order. It does not compute and it takes a while for a full system reset.

So now we’ve got through the whole shoe thing, we have the food issues to work out. New textures are not to be tolerated. If things smell too strongly, they won’t be tolerated either. You’d think one brand of summer fruits squash is much the same as another? Nope. Sorry, don’t even think about it. They will know and they will refuse to drink it. (Yes thanks Tesco, really enjoyed you stopping stocking that one)

If you’ve managed to navigate mealtimes, then you’re doing well. But then you probably only have a list of 4 things they will eat. If you happen to find another food they will eat and triumphantly add it the list, then message your ASD knowledgeable friends on Facebook, so they can also be in awe of your success, don’t get too cocky – said child will  simply refuse to eat something they’ve been eating every 4 days for the last 2 years instead. Oh, and don’t ever try and persuade them to take a bite of something new if they really, really don’t want to. They will gag and possibly be sick, which livens up mealtimes no end.

You may also be dealing with sensory issues, which can be varied as we cope with a lot of sensory input all the time. We don’t even notice it, a bit like listening to music while reading a newspaper, easy isn’t it? Not if you have Autism. You have input from your ears and your eyes added to the feeling of your clothes and any smells at the same time. It’s all too much, add in the weight of expectation of how you’re expected to behave and more often than not, a meltdown will occur.

If you ever spend time playing with children that have Autism, you may be forgiven for thinking that it’s not true, they do show imagination. They can act out scenes with character toys and recite phrases in appropriate sections. It’s not until you think back to what they’ve been watching on TV or reading in books recently that you’ll see the similarities. They’re simply copying and acting out what they’ve seen, it helps them to make sense of the world. Hence why letting them watch the news can be fraught with issues. You also have to play what they want to play and play by their rules. Which they’re not going to explain to you. But don’t break the rules, you will know when you do.

We’re very lucky, both our boys have a good vocabulary, but it wasn’t always so. Eldest didn’t speak at all until he was three and would screech and point if he wanted something. Some older children with Autism are completely non-verbal and I have nothing but admiration for their parents. I remember those days well and the challenges associated with them. They do sometimes lose their language when they’re upset and we have to remind them to use their words, not just screech at me. Fingernails down a blackboard have got nothing on a full on screech.

It never ceases to amaze me how much noise children who apparently don’t like loud noises can actually make. They’re loud. Very loud. They do not have a quiet setting. They also do not like large crowds of people, small familiar groups are good. New people are to be treated with great suspicion, we do not talk to new people. Until we get to know them, then the loud thing comes back.

Do not ever expect a child with Autism to keep a secret, it’s almost impossible. “Don’t tell anyone but….” actually translates as “talk about nothing else all day”.  If you don’t want them to repeat something you’ve said, don’t say it. It will be embellished, have zombies added, then be repeated. Usually when you really, really don’t want it to be. In front of your boss, your child’s teacher, your mother in law or a visiting police officer are all good examples.

Also, they are incapable of lying to protect your feelings. If you dare to ask “does my bum look big in this”, be prepared for a brutally honest answer that you may not like.

Give up on the desire to ever have a family photograph where everyone is looking at the camera at the same time. It will never happen. Looking at the camera, like eye contact, is an extremely difficult thing. You may get one, but not both children at the same time. Tell your family they’re “arty” shots. They think you’re all weird anyway and won’t question it.

If the boys have questions about people in wheelchairs, why people have no hair, why people look a certain way, are behaving in a certain way or any other tricky situation, do not expect the question to be either quiet or said privately. It will be in front of said person and it will be repeated more loudly if you do not give a suitable answer.

Keep smiling. Above all, keep smiling.

Preferably in a crazy way that discourages people from commenting on your child’s apparent rude behaviour. After all, your child won’t eat what’s offered, asks rude questions, talks too loudly, doesn’t like the light, the dark, or the noise. Must be the parent’s fault then yes?

They will probably still comment, or they may just tut at you. You may not rip their head off. This would do nothing to teach your child about being polite. You may however return with a cutting remark, but refrain from swearing at them. This will be embellished, have zombies added and be repeated…..

My boys









Part 2 



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