The Indescribable Anguish

There are days when it all just gets too much. When it’s just too hard to watch my son mutilate himself time and again. When I really don’t have the energy to make it through another three hour meltdown of epic proportions – especially since I know I will most likely only get ten minutes afterwards, before the next one strikes. Times when I wonder, “where did my son go, the one that used to look at me and laugh and smile and hug me tight?” There are days when I have to get on facebook and ask my group of supportive mum friends to send some strength and prayers my way, as I just can’t go on any longer.

I don’t belong to a lot of ASD groups, as I usually find them upsetting, discouraging and quite often inhabited by people who simply cannot see that there might be two sides to any situation. The groups I am in, are mostly comprised of parents who are working hard to give their children the best chance of leading a happy, healthy and fulfilling life. Every so often however, I find myself blindsided on a support group, when someone says “I’ve embraced my child’s Autism”. Really?

Embrace the fact that my child likes to pick the poo out of his anus and smear it? Embrace that he refuses to wear any clothes at all and hence we are unable to take him out in public? Embrace that he has the need to pull, squeeze, bend, stretch and pinch his p*nis so hard, that I often wonder if he’s causing permanent damage to his urethra? Embrace that his inability to communicate leaves me guessing at whether his latest medications are making him feel nauseous or giving him headaches?

When I mention the difficulties we have with BuddyBoy, the “embracing” parents will often tell me that it’s not the Autism that I have problems with, it’s the comorbidities. Things like anxiety, OCD, ADHD, sleep issues, eating disorders, aggression, self-harming. The sort of stuff that when you mention it to a doctor, they will tell you, “it’s all part of autism, we don’t know why”. These parents tell me that Autism is just a different way of thinking and seeing the world and has nothing to do with the medical issues, or any of the ‘bad’ things commonly associated with Autism.

If that’s the case, my son doesn’t have Autism. He must have something else – something that matches the DSM criteria of any version you’d care to look at, but is apparently not Autism because that’s just a different way of experiencing the world. Maybe we should change the DSM then – make it more obvious which people just see the world differently and don’t need any help adjusting to the community or functioning within it, and those that are completely unable to function by themselves. People like my son, who will in all likelihood require at least one on one care, 24/7 for the rest of his life.

My son obviously does have other conditions along with his Autism. Conditions that are apparently more likely to occur once someone has Autism – although given that Autism is not a medical diagnosis but a mental one, I wonder why this is so easily accepted by the medical profession. Why does his Autism make him gouge his skin out until he’s got a hole in his foot that leads to an infection? An infection that we cannot treat because he refuses to allow creams, bandaids, or disgusting tasting antibiotics anywhere near him. Why does his Autism make him not want to eat or drink, regardless of how many of his favourite (read: few, tolerated) foods you offer. Why does his Autism make him not need sleep while his weary parents are struggling to stay awake? Why does he need to shred and destroy things, even when we have given him suitable sensory substitutes (which he won’t touch)? Why does his Autism make him bite his hands, wrists, arms, knees, legs and feet to the point of bleeding (never mind the bruising) when he has a meltdown? And I’d really, really like to know, why his Autism makes him squat on the floor and strain extremely hard to produce a tiny little poo (because he doesn’t actually need to go), just so he can play with it and smear it, when he would never touch any other similar texture because he doesn’t like the yucky feeling?

Yes, he has OCD – the constant repetitive motions and behaviours (also a sign of Autism) that interfere with his ability to function are due to OCD. Interestingly enough, OCD is more likely to happen if you have ASD, and is harder to treat because of his ASD. His aggressive behaviours are quite likely due to PANS, which we cannot treat him for properly due to his Autism’s sensory issues and refusing medication. More and more parents with ASD kids are finding their children fit the PANS profile as well. My son also has issues with reflux, food and other substance intolerances, anxiety and ADHD –  health issues that commonly affect children who have Autism.

Does he think differently than I do? I don’t know, his Autism makes him unable to communicate with me except on a very primitive level. If it was just a matter of his experiencing the world differently, and thinking in a different way, then I wouldn’t be here every day, wondering how to get him to stop biting himself, how to get clothes on him, how to get him to eat or drink, how to give him medication, how to hang up the washing or go to the toilet while still having to watch him as he cannot be left unattended due to his behaviours. If it was just a different way of thinking and feeling, my other children wouldn’t be traumatised by their brother’s behaviours, we would not have to live with secure locks on every door to protect us and BuddyBoy, we wouldn’t be broke beyond belief because we’re constantly having to fix or replace the next broken thing.

Do I accept and embrace my son? Absolutely. Do I accept and embrace his disabilities and health conditions? Never.