Autism

It’s Autism Awareness week. It does feel like it should be Autism Awareness Week every week, every year until we finally start to make some real progress. Let’s not kid ourselves as we have are only just starting down that road.

This years theme is centred around inequalities. Inequalities that have become even more stark and exposed during the pandemic.

I tell you what is unequal. Bridge building. It’s always up to the autistic person to try and build those bridges. Our society, our institutions and too many of our communities are not interested. They see Autism through inaccurate stereotypes. Something to be ignored or brushed under the carpet. We’ve all experienced that approach. Individuality is frowned upon. People need to be forced into set moulds and templates.

Yesterday I was listening to the words of a really wonderful, unique and brilliant teenager. He was talking about his struggle with autism. His daily fight with inequalities and ignorance. Why was it so hard for people to understand. He was saying that every day he heard so many false stereotypes. But in fact he had a sense of humour, he liked having fun, he liked having friends, he had feelings, he cared. He was as valid as an individual as anyone else.

That lad wasn’t different he was UNIQUE. We all should be. It’s a better world for that.

We all should be welcomed and supported.

White rabbits

A cold, wind swept day. Definitely two jumper weather.

So it’s not quite sunbathing weather here. We did sit outside for a while. That’s with winter coats on while holding hot water bottles.

While outside we talked. Well when I say talked it was more about trying to reassure Hawklad. He was worried, really worried. April 1st and he had forgotten to say ‘white rabbits’. In Britain and also I believe in North America there is a tradition that saying ‘white rabbits’ as the first words of the new month brings good luck. Pilots had a similar superstition during the last war. Saying that phrase as the first words of each day apparently helped provide protection during the daily upcoming flying endeavours.

Hawklad has been doing the ‘white rabbits’ thing for a while now. I think he picked it up from me one time. I’m a bit annoyed with myself as I try to avoid Hawklad seeing me with any superstitions . Well this month he forgot. I would never give it a second thought but Hawklad was spooked. He takes things very literally. That can be a common personality trait with people with Aspergers. So I tried to reassure him but rather unsuccessfully. I will keep working on that. But it’s so difficult for him. More things to worry about. Life is so complicated…..

Vegetate

I’ve been trying to practice yoga and tai chi for months now. I diligently watch and follow the videos. All the really glossy and professional videos. I was trying again this morning. Following the instructor through her perfect routine. Even her dog sits beside her perfectly. Never moving. In the background the gentle sound of peaceful music. Perfect.

Meanwhile in deepest Yorkshire.

A muppet is seamlessly moving from one body creak to the next groan. Losing balance and crashing into furniture. Constantly fearing my pants are going to split under the galactic pressure being exerted on them. Every time I hit the ground a mad dog instantly leaps on me and I replay the Bill Murray Ghostbusters scene – I’VE BEEN SLIMED. And no gentle sound of peaceful music here. Rather the sound of derision and laughter….

What on earth are you doing Dad”

“If this was on TV it would be banned”

“You look a right sight

Funnier than a Will Ferrell movie

Say that again Dad. Golden Rooster. More like drunken Pigeon

Are you supposed to be balancing on one leg or head butting the wall

My Dad has turned into Homer Simpson”

Please never do this when any of my friends visit”

Your just embarrassing yourself now”

Technically speaking this probably means that I still have a long way to go on my spiritual exercise journey. Or more likely …. time to get the mega pack of biscuits out and vegetate.

Terminator

Kinda feels like the type of sky you get just before it all goes horribly wrong in a Terminator movie. This time no coming storm. Just me in the kitchen making a curry. Actually very similar when you think about it. Especially if you have ever seen or unfortunately tasted one of my Saag Aloo horrors.

As I watched that cloud formation role through my thoughts had moved from terrible cooking to more important stuff. Doesn’t that cloud look like a polar bear lying flat out on its tummy. Well it did to me….

We spent an hour or so playing the cloud spotting game today. Fantastic free garden entertainment, the kinda stuff you need during a prolonged lockdown. While we were cloud spotting I kept hearing a nagging voice in my head. We could be so easily playing this in a years time. It’s not unreasonable to assume that Hawklads anxieties and phobias will still be here in a years time. If so then our lockdown will still be in place in March 2022. That would make it TWO years. TWO years. Maybe that is what the clouds are telling me. There is a storm coming. A long protracted one.

Grim

Just let this research finding sink in (press on the link for the details)

Autistic people are four times as likely to experience depression over the course of their lives as their neurotypical peers

In the UK the approach is that parents have to fight tooth and nail for any kind of support. The fortunate ones who get some support find out all too frequently that support starts to be withdrawn around the teenage years. Adult autism support is basically non existent for the vast majority.

In our little family world Hawklad is struggling. His anxieties are on the rise. He is stressed out. Trips outside of the house and the garden are currently impossible for him. We are fortunate in that we do have access to some psychological support. Sadly from a Team who are stretched to breaking point. But we still have some support. For how long that support continues – who knows. He’s a teenager. This is the only support he gets now as all the other services have already been withdrawn.

How many other of autistic families are facing the same challenges. TOO MANY. How many autistic adults have been let down by society. TOO MANY.

This is grim.

Motivation

A number of comments over the last few months have brought up one word. Motivation. Motivation for the parents to keep grinding through the homeschool days. Motivation of the teachers to keep entering cramped and unhealthy classrooms to keep trying to educate. What are the real motivations of the Government. AND most importantly the motivation required for pupils to keep trying to learn when the odds are stacked against them.

Dad, REALLY, what is the point…”

What’s wrong Hawklad.

Nothing from best lesson of the day. Not a thing yet the next lesson manages to flood me with stuff after stuff on what the various religions say on same sex marriages.”

Don’t get me wrong it’s an important thing. But not in this much detail. Frankly I’m bored now. Very bored.”

They tell me in great detail what others think but haven’t bothered to ask my opinion.”

Well Son it’s the last lesson of this for a week.

Well it will be back next week talking about the same things again. Not sure it’s possible to be anymore bored than I am right now.”

“What is the point…. well now they have given homework out on this. Tough – I will just take the punishment. I’m not doing it.”

Well find something else to learn about.

I have. I watched a video on Maggie Thatcher and how she was booted out of office.”

Good for you.

It’s not something that will be on the exams as school don’t cover it. But stuff it. Its better than the stuff we are being told what to learn about today. What is the point.”

Abstract

Let’s be honest, it’s not really sunbathing weather here in Yorkshire. It’s ‘let’s see how many layers of clothes I can squeeze under the down jacket before it bursts at the seems’ weather.

Go on then Dad, can you see it

What is that supposed to be again.

It’s an abstract artist’s interpretation of what our market town looks like.”

No that’s not really jumping into my brain that interpretation.

What do you see then Dad.”

A series of random line squiggles and odd shapes. Forming what can only be described as a incoherent mess.

Exactly Dad. Apparently that’s the town skyline and its most iconic landmarks.”

Really. If it’s most iconic landmarks then I’m certainly not seeing traffic jams, floods, not open at weekend signs, pizza takeouts and hordes of parking enforcement officers.

Dad, Aspergers clearly doesn’t get abstract art…”

It’s ok Hawklad, Dads don’t get it as well.

I’ve got to produce my own version of that now. Really…”

Shall we just put a pot of ink and a piece of paper in with the gerbils and let them get creative.

Would be a good idea but the gerbils eat everything in front of them”

Well you can help me do it.

Ok do you want me to draw as well.

No Ive seen your artistic skills. Look at the state of my hair. No you can do something your better at.”

Ok you name it.

Go and find some chocolate for me please”

I can do that…

This time

I can’t blame him for these, this time. But it does explain why he keeps coming in the house with muddy paws.

I had a post yesterday about Autism. When I wrote it things seemed ok with it. But then something happened. I happened….

I’m still working through this pcurrent bout of depression. Won’t be the first or last time I do this. When depression becomes DEPRESSION with me I start to doubt myself. Question my worth. That’s what happened yesterday. I reread the post and didn’t like it. The words were wrong. Uncertain of the message. Why was I bothering. If people want to read about Autism and Autism Patenting then they would be so much better off going to other blogs. Go to a blog like Robyn’s wonderful one. Nothing I said could change my mind. The voices in my would not be satisfied until I deleted the post. Eventually that is what happened.

Today the voices are not so strong. I guess today the post would have had a slightly better chance of being published. With my depression it comes in waves. Bad days then better days. Will be that way until I finally get on top of this run of D. In the meantime I will plod on. Trying to not listen to the voices in my head too much. Focusing on those things in my life which bring joy and happiness.

I can do this

We can do this.

The future

The National Autistic Society has carried out research on the reality of adults living with autism spectrum disorders. It’s a sobering read.

I just want to highlight some specific lines in the report.

49% of adults with autism or Asperger syndrome are still living at home with their parents. 65% of these adults have had no community care assess- ments and are therefore unlikely to be known to the statutory agencies who should be supporting them.

31% of adults at the lower end of the autism spectrum are still being cared for at home, despite their high level needs. 45% of parents believed their son or daughter required 24-hour care, and only 15% thought they could live in sheltered or shared accommodation.

Only 3% of adults at the higher end of the autism spectrum are living fully independently, and a further 8% are living independently with some regular professional or family support.

As the report points out Families are picking up the care responsibilities in the UK associated with autism. Repeated Government’s have buried their heads in the sand. The current government unbelievably has probably set the bar even lower.

Like many families around the UK (and worldwide) my thoughts are increasingly focusing on the future. What will happen to Hawklad as an adult in our society which is so badly setup for those on the spectrum. Let’s just say that its currently not an entirely reassuring feeling I have. Yes I’m worried.

Autism

It was such a grey day today. Couldn’t find anything to photograph so let’s see what happened a year ago. So back 2020 and guess what was back!!!! After a few really bad storms our lake made a brief appearance.

One of the questions I’ve been asked the most by other parents and a few teachers (but interestingly never by family and friends) is

‘Does Aspergers get better with age?’Even occasionally the question becomes will he grow out of it….”

For every polite question I have trotted out the same answer

The condition will not change but the personality traits may well fluctuate over time. Some traits may become less noticeable while others may become more pronounced.

There is research in this area but I will leave others to discuss that. I will stick to my well trodden line of each child and adult is unique. With Hawklad it is very much on par with my standard answer. Some of the traits have become less apparent as he has got older. Some of his old repetitive behaviours like hand flapping are hardly seen these days. Where’s as some traits like fixation on objects and constant motion have stayed largely the same.

But there are also existing traits which are becoming far more pronounced. Verbal stimming (repetition of words and sounds) has dramatically increased with him. Phobias and social anxieties have increased but how I’m just not sure how much of that is down to the pandemic.

Aspergers is very much who Hawklad is. It’s his personality. It is him. Sadly there is still too often a fundamental misunderstanding of what being on the spectrum actually means. Not enough understanding of what it is to be Autistic. We have such a long way to go as a society.