Autism. It’s not that difficult to live with, is it?
Now, before you spit your gin/coffee/whatever gets you through the day, at the computer shouting at the screen “IT IS BLOODY HARD!” please relax, read on and let me explain.
My Eldest Spawn has a diagnosis of Asperger’s Syndrome (please note I am in the UK and that term is still very much being used and diagnosed).
He is an awesome little character. He sees the world in a completely different way to me, he is creative, he is inquisitive, and he is funny.
He can also present as aggressive, angry, have huge meltdowns, requires visual aids for getting dressed, have huge difficulty following instructions, needs strict routines and plenty of down time, otherwise he will lose executive function.
To manage that, we don’t do spontaneity in our family. Everything has to be planned. ES has to be prepared as much as possible, including using social stories and pictures. We have a timetable at home for after school which we must stick to. And who do think organises the visual timetable, changing the cards and making sure schedule is correct? Me. And can we go out the house without remembering to pack his ear defenders? Not a chance. And what happens when is anxiety is so bad that he can’t sleep, walk or talk? Who deals with that. I do, of course. And Mr AA.
So why, you ask, do I have the audacity to say it’s not that hard to live with? Let me explain……..
Of course living with autism can be hard, frustrating and exhausting, but I challenge you to think for a second, is it autism that causes life’s difficulties? Or is it the rest of the world and it’s attitudes towards autistic people, and neurodiversity in general.
This struck me after having a lovely summer holiday. During this 6 week break, we dealt with all the usual stuff, meltdowns, strict routines etc., at times it was even more heightened due to ES not having the routine of school, but we dealt with it.
Rewind to previous few months before the summer holidays, and that, that was hard. It wasn’t autism that was making life so stressful to the point I had to take time off work. It was other people and their ignorance.
Hard is fighting with the school to get them to use a visual timetable even though they say “he doesn’t need it”.
Exhausting is explaining to the school again why yes, he bloody does NEED it!
Frustrating is meeting with the school in February, then March and then June, but them never putting in place anything they have agreed to.
Hard is watching ES have a meltdown because he has not been allowed enough downtime at school and is having a cognitive overload.
Exhausting is trolling the internet, reading books and trying to self-educate and work out strategies because you have been given a diagnosis and sent on your way with little to no real help.
Frustrating is having to explain, yet again, to family members and friends, that your son has autism, even though they think he will ‘grow out of it’.
I am not a saint who is an autism expert and who totally knows what she is doing! I am just getting by, doing my best like everyone else. I’m knackered. I cry (sometimes into a wine glass) but if I’m honest, I’m not knackered or crying because ES is autistic. It’s usually exhaustion of navigating a broken system, or frustration that my gorgeous wondrous little man has been misjudged for behaviour he cannot control, like constant roaring. But who cares what others think, right? (All of us, probably, even a tiny bit!)
Don’t get me wrong, there are times when I will look at MR AA across the dinner table, both of us thinking, ‘how long till bed time?’ as ES stims by banging his knife on the table, after an afternoon of meltdowns. But I’m sure all parents do this, even ones with neurotypical kids. (I have one of those too and she just as challenging, in her own way!)
On the other hand, autism is hard to live with. Do you know who for? My Son. It is hard for him.
I can’t speak for other autistic people, but I would bet they face very real, difficult challenges every day, simply trying to live in a world that is not designed for them. Live in a world that professionals would rather argue over the language we use, “you must say person with autism, not autistic person” than make any actual tangible changes that would make a real difference to those on the spectrum.
Any difficulties I face as a parent of an autistic child, pales in comparison to any difficulties my son faces as an actual autistic child.
The main point I wanted to get across in this blog is that ES is not a burden. He is not a drain on the family. Autistic people are not burdens or drains on society.
Nobody’s life is easy. Everyone has their own struggles. Ours is navigating autism. It can be difficult, but we plan, we adapt, it goes wrong, we plan, we adapt and do it all over again. We also have a fridge stocked with beer cause sometimes a cold one helps!
Over all, ES is awesome, autism and all. I wouldn’t change him for the world. But I would change the world for him.
*please note, this is my experience, my opinion and is in no way meant to down play any real struggle any of you are going through.