“How is Alex doing?” is a question I’m often asked. It’s also one I often avoid answering as the standard, “Fine, thanks” would be a blatant lie, and anything else would take too long to explain. So here is my answer for all those people that have asked!
Alex is now a ‘big boy’ of 12. I say ‘big boy’ because we’re not a tall family, and so far Alex’s height has remained fairly average! Despite his appalling diet, he has still managed to grow in height, even if his weight is far too low. There is a common belief that children with Autism (particularly boys) will be tall and built like the proverbial outhouse. Many are – but many have also had a variety of medications that have the unwanted side effect of gaining weight (and quite a lot of it). Yes, we also tried the medication pathway, and found that Alex suffered hugely from the side effects, while the intended effects were simply missing. In other words – they didn’t work for him and actually made him worse.
Our big boy is starting to show more obvious, physical signs of puberty. Hence our new journey into deodorants he hopefully won’t react to, that will however help him to feel less sticky (and stinky)!
Along with puberty come the teenage mood swings – oh joy! In Alex’s case, they are also combined with the ‘toddler’ tantrums when things don’t go as expected or wanted. While Alex is actually quite intelligent in more ways than people expect, he is also less likely to care about socially acceptable behaviours and will let you know if you’ve overstepped the mark, or he just doesn’t like you.
From the time Alex first started at school, anxiety has been a huge issue for him. If he is unsure what to expect of a person or situation, or what is expected of him, he finds it difficult to cope. While he understands nearly everything that is said to him (depending on his coping skills at the time), he is unable to verbalise what he is feeling or wanting. This means that he has to communicate through his behaviours, rather than words. The higher his anxiety is, the less he is able to communicate, and that’s when we see the most painful behaviours.
Any autism parents reading this will know exactly what this means – you’ve lived it, too! But for those who can’t get a mental picture with what I’ve just written, let me try and paint it for you.
Alex has carers (support workers) looking after him 24 hours a day. Naturally they don’t work for 24 hours straight – they work in shifts. So when a new shift starts, a familiar face leaves, and another one appears. Now pretend for a minute that you have no concept of time, and have problems understanding the language around you. So the new people just seem to appear out of nowhere. Wouldn’t you be a bit startled to suddenly have other people in your house with no warning?
You might be polite and say, “Oh, I wasn’t expecting you!”, or possibly be a bit ruder and say, “Give me some warning next time”. Alex cannot do that. So he screams, runs from the room and bites his wrist instead. And possibly continues biting himself for 15 minutes while he throws himself repeatedly into a bean bag. This is why his carers work hard at having a visual schedule on the wall, and letting Alex know that a shift change is coming up. It helps to cut down on some of those behaviours.
Here’s a scenario most people would be familiar with. You see a toddler requesting a chocolate bar while waiting in the checkout line with their mum. You know that the mum has three options – she can say yes, she can try and distract her child, or she can say no. As parents, if we’re tired and simply don’t have the energy to distract or handle the consequences of ‘no’, then we’re more likely to just say ‘yes’ and be done with it. But usually we try to distract or reason with the child, knowing that we don’t always want to be giving the child absolutely everything they ask for.
Remember how I said Alex combines toddler behaviours with those of a pre-teen? That means that if he asks for something and he doesn’t get it, you’d better have a bomb proof shelter ready. He will yell, he will scream, he will throw himself down, he will bite himself and he will also attack you. If he’s in the car, he will kick the seat in front of him. If he can get his hands on your phone, he will throw it. If he can break something within reach, he will.
Let me ask you – if you were his carer, wouldn’t you be more inclined to just say ‘yes’ so you can avoid those behaviours? I would! And I have done that many, many times as a parent, because I simply didn’t have the strength to withstand the fall out from a ‘no’. Yet his carers are having to deal with this situation several times a day, knowing that it’s possible they will be hurt, that Alex will definitely be hurt, and it’s quite likely that something will get broken. Thankfully they don’t have to worry that other children will be hurt – a concern we had on a regular basis when Alex was at home.
Over the last few weeks, Alex’s ‘behaviours’ have increased. He has been throwing glass jars of jam, but has no understanding that glass can cut and hurt him. He has been punching holes in the wall. He has thrown food on the floor and insisted on eating it where it lay. He has pinched and punched his carers. He smashed the glass cooktop with a wooden spoon because he didn’t feel like eating when he was asked to. The list of things he has broken goes on, and his wrists and arms are showing just how upset he has been getting. As are the frayed nerves of the carers who’ve been in the firing line.
Most of these behaviours were in response to being asked to do something. For you Autism Warriors – yes, we have a history of Oppositional Defiance Disorder and Pathological Demand Avoidance in our family. The carers have strategies that they use to help minimise Alex’s anxiety around being asked to do something. They tell him (and often show visuals) ahead of time. They use a timer to give him a better idea of when something will happen. They use certain words, and avoid others, to help Alex respond better. They keep to a routine as much as possible. They do everything they, our therapists, and we, can think of, to help Alex avoid these challenging behaviours.
Yet the behaviours are getting worse. We also regularly see these behaviours during certain of Alex’s favourite movies. Alex will request to watch something that will upset him, and end with him screaming, biting, pinching and throwing. Yet he requests to watch these movies over and over again. If you suggest something else to avoid the inevitable meltdown, it happens anyway.
As a worn out parent (or carer), you really just want to say, ‘stuff it’. Let him watch what he wants. Let him eat what he wants (or not eat). Let him not drink. Let him sleep or not sleep when he feels like it. Let him break things for fun. At least it will reduce those bite marks on his arms. At least it means less bruises for the carers. At least you might not be waiting for the next meltdown and its horrid consequences.
The reality is that even if we were to avoid all demands on Alex, he would be having meltdowns. Nobody can tell us why. Nobody can tell us how to make it stop. We’ve tried a LOT of things, had a lot of arguments with professionals, and as previously mentioned, we even tried medication. None of those things stopped it. Some things helped, others made it worse.
There’s a lot more things we would love to try, but due to Alex’s disabilities, we can’t. You see, Alex won’t take medication. He won’t take pills, tablets or anything that he thinks is suspicious. If you can put a substance into his food or drink, and it has no smell, no taste, no texture and no colour, then you’ve got half a chance. That’s assuming he’s actually eating (or drinking), and believe me, that’s a HUGE problem right now.
Our (Sydney based) paediatrician even suggested giving him injections to treat what we’re pretty sure has been a PANDAS/PANS flare since 2016. Unfortunately, we couldn’t make that work, as the Bendigo paediatrician in charge refused to let us. Which I thought was pretty ridiculous, given that this same paediatrician was the one who trialed Alex on Risperdal, but he’d never seen anyone react the way Alex had. He sent us home at the time with the instructions to “figure it out as best we could and let him know when we found a suitable dosage”. Yet that same guy is now in charge of saying what treatments we can try with Alex!
We live with the heartbreaking reality of Alex’s autism every day. It’s not pretty, it’s painful. Painful in a physical and mental way for Alex, his carers and anyone who knows him. It breaks our hearts every time we read about his self-harming, every time we see the scars and fresh marks on his wrists. It worries us, knowing that his carers will be burning out quickly with the huge stress of having to look after Alex during these behaviours. As parents, we feel that we’ve failed to keep Alex safe – from himself, and from his Autism.