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.
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 The fortunate ones who get some support find out all too frequently that support starts to be withdrawn around the teenage years.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 This is the only support he gets now as all the other services have already been withdrawn.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.
Let’s be honest I’m not the biggest fan of school homework. Not a fan all those years ago when I suffered it as a child and certainly not now as a parent. Occasionally the homework I’ve encountered has had some learning merits. On a few rarer occasions it’s been interesting even wait for it – FUN. Sadly in the vast majority of cases it’s unremittingly dull, of little value to the child and no better than parrot learning dross. A desperate attempt to tick off parts of the government curriculum. I’ve lost count of the times Hawklad has put so much effort into a piece of homework and then gets zero feedback. Too often it’s probably not even marked.
What is the point….
Hawklad has a number of such seemingly meaningless pieces of homework to complete this week. Let’s just look at one of those. How about Religious Education. To paraphrase
Look at your last classroom assessment. Examine your answers and look at the comments. Make corrections to your answers in green pen (must be in green) so that all the teacher comments have been clearly considered. Now fully re-answer two of the assessment questions in your book ensuring all teacher comments are addressed. Homework must be submitted before the start of the next lesson.
That’s RE…. I might be missing something but is that really how you teach this subject. How you teach any subject. How is that approach doing anything positive. Talk about draining the FUN and ENJOYMENT out of school. And guess what.
“Dad can I drop this subject….”.
Homework – don’t you just love it…. Well the Government does as it fits in with their schooling vision….How depressing is that.
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.”
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 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.
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.
The sun goes down on another school at home day. It was one of those days where it feels like for every step forward we took two giant steps back. Such hard work.the really frustrating thing is that it wasn’t the actual learning which was the issue today. No the frustrations came from repeated system crashes, missing content, confusing instructions, formatting disasters and online tests that will only work with exactly the right spelling and format.
We can make home schooling so much easier for the pupils than this…
So with the frustrations still ringing in my head another school communication arrived. All about the required Covid testing to support the schools reopening next week. Each family will be required to self test families using the rapid result kits TWICE a week. On top of that all pupils will be tested with the same kits once a week in school.
My one question is that if our schools are completely safe and not hubs for virus transfer (according to our PM) – why is this level of testing required…..
The school letter also apologised to parents for the confusing over masks in the classroom. A few days ago the PM told schools that masks had to be worn in the classroom. Our school wrote to parents to inform them of the new rule. Unfortunately the rule has now changed again. The PM has now said they are only recommended and school can’t enforce them.
And still it shrinks. I’m going to miss it when it’s gone.
Back to school at home and back to the daily fun…. Started with the usual happy pep talk from a teacher. To paraphrase.
‘Remember I’ve set some work before the week off. It’s voluntary but I can see what people have done and how long you have spent on it. I am checking….I’m about to do your assessment….”
Then I accidentally phoned the school. Who hasn’t done the ‘put the mobile in your back trouser pocket just to see how long it takes for your bum to unlock the phone and dial a number’ trick. The mobile can’t have been in the pocket for 2 minutes before suddenly I heard a strange voice coming from my nether regions. How is it that it takes me hours to figure out how to unlock the mobile, find the phone app, then repeatedly fail to type in the number. Yet my butt can unlock the phone and successfully call someone in a fraction of that time…..
So after I had apologised to school reception it was back to the usual fight with submitting pieces of work and trying to find the class work on Teams. Fights with explanations, hidden meanings and unclear instructions.
Quickly followed by the ritual Dad humiliation.
“Dad apart from Andy Warhol what other Pop Art practitioners can you name.”
“Ok can you at least name a few famous Pop Art pieces and before you say it, NO Godzilla doesn’t count.”
Erm there was that picture with about 100 Madonna’s replicated.
“Dad. You mean Monroe and it was 50 times…”
That’s the one. Then there was the soup tin. Erm Andy Warhol was in Men in Black 3, does that count?
So basically no help…….
But maybe my backside could become Pop Art. Probably not. Not sure how big the canvas would have to be to get 50 replicas of my butt on. But if they could then I could literally be sat on an important piece of avant garde culture. Sat on a fortune.
Blink and it’s gone. Blue sky.
I remember back to my school days. Apart from living in caves and avoiding the dinosaurs, I was like most kids. Some stuff went in to my head easily, other stuff not so easily. Stuff about Physics, Mathematics and Geography went in. Subjects like History the dates would take a lot of effort to stick. Subjects like Chemistry I was ok. However French I was awful, it might as well have been a foreign language…. Biology I was not much better.
Today I was trying to help Hawklad understand Chemistry. He struggles to visualise chemical reactions. So trying to calculate reaction energy levels was a nightmare for him. Whatever we did he just couldn’t see it. That’s the thing with Hawklad, maybe that’s the thing with his Aspergers. He gets blind spots. They go beyond the dyslexia issues. With dyslexia if you read out the word then he can understand what he’s trying to learn. But these nothing seems to shed light for him. Some things he just can’t process and visualise. With a subject like French it’s a massive blind spot. History there are zero blind spots. But with other subjects he can understand most things really well but randomly encounters these blind spots.
Mathematics it’s decimals and volumes
Biology it’s cell structures and names
Design Technology it’s visualising 3D designs
Geography it’s grid references and grid lines
Physics it’s magnetism
Home Economics it’s cooking times
And Chemistry is chemical reaction equations
He can be going along swimmingly then encounter one of these areas and it completely stops him in his tracks. We kind of ignore them now. Blink and move on. Focus on all of the many areas he can make progress on. Hope that the blind spots don’t come up too many times in his main exams.
At the moment that’s our plan.