Autism. It’s not that hard.

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.

 

Much love

Autism Anonymous

 

*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.

Hi. Welcome to Autism Anonymous.

Welcome to my blog, Autism Anonymous.

I am a Mum to 2 children, one of whom has Autism. I am also an Early Years Educator and as well as studying Autism, have worked with children with Autism over the past 11 years. So you’d be thinking I probably knew a lot about it, right? WRONG! I THOUGHT I knew a lot about Autism, but boy was I wrong?

Autism is a huge spectrum, hence Autistic Spectrum Disorder (ASD), but for some reason, there is still a lot of focus on “classic autism” whatever that is? The things I thought I knew about Autism, the things I had been taught and learned actually are nothing more than a list of classic symptoms that pigeon-hole individuals. And because this is the information that is out there, it is extremely hard for anyone who deviates from this to be understood, and rather unfortunately, taken seriously as being truly Autistic.

I did have some understanding of the wide variety of Autism as I had worked with lots of different children and teenagers on the spectrum, and no two were the same (why should they be?) but still, I had no idea of what living with Autism was like.

Well…. now I do! When my Eldest Spawn was born, it was a difficult time. He was a difficult baby, (God help anyone who would have dared said that to me at the time!) In terms of feeding, In terms of sleeping, In terms of needing a strict routine otherwise he would be screaming, he was difficult. And I thought it was normal. Well, I was a first time mum and the first one out of my friends to have a baby. So it was normal, it was our normal.

Although his first few months where difficult, he struggled to gain weight and meet his milestones, things started to get better, a lot better. At 7 months we sleep trained him (don’t judge, it was him or me at this point!), he was well onto solids, in fact eating 3 good meals a day with snacks, and he started smashing his milestones. As long as we kept to his routine he was such a happy baby, compared to the first few months, he was a joy.

By 18 months, when most children know around 40 words, Eldest Spawn was stringing 4 and 5 word sentences together, and his vocabulary was vast, a far cry from the websites that tell you being non-verbal or late with speaking is a sign of Autism.

Fast forward to age 4 1/2; Eldest Spawn got a diagnosis of Asperger’s Syndrome within Autistic Spectrum Disorder. It was a relief to know we (me and Mr Autism Anonymous) where right. And I truly thought that ES would start to get the understanding and support that he needed and deserved. But the ignorance continues. The boy is a genius. He loves facts and can talk the back legs of anyone who will listen about whatever it is he is interested in. He loves letters and numbers and generally loves learning. He also sometimes has meltdowns to the point he becomes non-verbal. His anxiety can be so bad he says his legs don’t work. He can’t have a sleepover with his Gran (who he loves) because it is too far out of his routine. He has zero organisational skills and needs a chart to help him get dressed, despite having the physical ability to be able to do so.

And all this, my friends, is where his true problems lie. Not in his Autism. Autism makes him who he is, and he is awesome. But his “type” of Autism means he gets very little understanding. Those who don’t know about his diagnosis can think he is being a brat and that me and Mr AA are pandering to him – so not our style! Whilst those that do know he is on the spectrum say things like “yeah but It’s not that bad is it? He seems fine.” And even the professionals, particularly within education, just can’t seem to wrap their head around this child who can do some really awesome and difficult tasks, is the same child who needs huge support with daily tasks like getting dressed or remembering to wash his hands after going to the toilet, and the resulting meltdowns all the stress has on him when supports are not in place.

It is this lack of understanding that has inspired my blog, Autism Anonymous, named as such because I feel Eldest Spawn is a bit like a secret autistic, fitting in with the rest of us nuerotypicals just enough that most of us would never know, whilst at the same time, having huge daily struggles with life’s seemingly simple tasks.

Through this blog I aim to discuss all things Autism, based on my own experiences, and share this to raise awareness that everyone’s Autism story is that little bit different. One is not less than the other and all should be respected and supported.

It can be a hard journey, so I hope that my blog may show that you are not alone, and we may even have some laughs along the way.

Autism Anonymous xx