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.
What a lovely sunset.
Last night Hawklad reminded me that this Sunday last year was when we first talked isolating. I remember it quite well. A Sunday evening. I was sorting out the school bags for Monday morning. Hawklad came into the room and asked how did we know that this new virus wasn’t already in school. How did we know the bus was virus free. Should we stay off school until it passes. I tried to reassure him but I could sense his anxiety. I emailed the school to let them know that he was anxious. When he’s anxious it can throw off his ability to sit still and concentrate.
He did get to school the next day but not by school bus. He asked to be driven in. A few days later school proved too much for him and our family lockdown started. Soon the world changed.
It’s odd looking back. Its hard to believe that we have been isolating for nearly a year now. I wouldn’t have dreamed that I could have coped with that much isolation fit that long. A world suddenly constricted to our garden and house.
But we have…….
We can do this.
I don’t know why but as soon as I saw our morning sky I immediately thought of two opposing medieval armies preparing for battle. Just waiting for the mist to lift before they crash into each other.
Our area has had so many bloody battles dating back to Viking times. Who is to say that these very fields have not witnessed that grim sight.
Today’s grim sight was restricted to this unshaven, unkempt Bloke with zero fashion sense leaning against the fence. Coffee cup in hand, exposing his partly covered hairy legs to potentially the ghosts of the past. I guess in years gone by I would have opted for the kilt look. Need to get the air onto those ‘airy knees.
Mist is an apt way of describing my current thinking this morning. After a year of lockdown (now just two weeks short of that anniversary), I still can’t see the way forward. No nearer establishing when (or if) Hawklad will feel able to return to the outside world. Is it school or permanent homeschooling. Will my job survive. When will be our next holiday or excursion. Are my dreams on hold or permanently cancelled. Will I ever get to where my heart desperately wants to go. Is that it for concerts or football for us. When will we see friends and family. Is that it for hugs. Is the world still out there. Has anyone even noticed that we aren’t part of the crowds anymore.
A pandemic year and I still can’t answer those questions.
Mind and hope mist.
That is not a great feel.
The lake is going, going, gone….
It’s been a busy old day. Much multitasking.
- Cleaning out the cat tray,
- Darning holes in jeans,
- Trying to reassure,
- Baking bread and some small buns,
- Cleaning the toilet and bathroom floor,
- Explaining probability to Hawklad,
- Hair cutting,
- Trying to figure out why the dishwasher had stopped cleaning,
- Putting a new belt onto the hoover,
- Removing a pet related stain from the sofa.
- Changing the bedding,
- Ordering ingredients for next weeks school at home cooking project,
- Trying to measure Hawklad for new clothes,
- Trying to make an omelette which is approaching edible.
At work multitasking was so valued. Multitasking usually in areas you might be good at or at least competent. Maybe backed up with some training and clear process guides. At home, my home, it feels very different. Yes it’s multitasking but never in areas I’m good at. Often feeling like I’m not even vaguely competent. Constantly having to refer to incomprehensible instructions, Google searching for help videos or just looking blank as I kinda just wing it.
Don’t get me wrong, I do have things I’m good at. I’m ace at saving Football penalties. I can smash into Rugby tackles. I can bowl a mean leg break. I can climb rock faces. I’m an expert on Godzilla and the X-Files. I can recite almost word for word every Fawlty Towers and Captain Scarlett episode. I rock cycle shorts (ok I made that one up). I can balance unfeasibly large numbers of coins on my elbow and then catch them one handed. AND I’m one of the worlds great air guitarists.
These are all great talents but strangely have not yet been required in my single parenting career. I wonder why? 🤣😂 But I live in hope. One day one of those skills might just be required. Then I will have found my parenting sweet spot. A task I can excel in. No need for instructions or help. No vacant look or red mist descending. That reassuring feeling of ‘I’ve got this’. How good will that feel….
It’s horrid weather today so let’s go back a few weeks. That’s better.
I heard someone from the Government brush off a parent talking about her daughters genuine fears and phobias about returning to school. Her daughter doesn’t think her classroom and school is safe enough. From the sound of it her daughter is in a similar place to Hawklad. Really struggling. The interviewer cut off the parent saying that she was in the minority and the vast majority would see things much more positively. The message from the Government followed instantly. People and kids who had concerns and fears needed to listen to the majority. Schools are completely safe, just get on with it. Parents have an obligation to send their children into schools when they open.
Meanwhile back here the NHS Psychologist is just at the early stages of a treatment programme to try and help with Hawklad’s deep seated anxieties. No guarantee that the programme will ever work. This week’s task is for Hawklad to try and stand in the front garden for 1 minute. The message is don’t worry if you can’t do that. Even a few seconds will be a massive leap of faith. And if he can’t do it at all then we can try another week. Pushing people with significant fears and ingrained anxieties can do so much harm to their long term mental health.
The Government and the ‘Majority’ are not trained mental health practitioners. They have absolutely no idea what some people are going through. On this issue they can stand out in the rain and whistle for all I care.
It looks like Yorkshire. It feels like Yorkshire. Its moody, dark, windy and cold. It is Yorkshire. Some places are perfect for growing olives, oranges, pineapples and coconuts. The climate in some places are just perfect for fantastic wine. Here in Yorkshire the climate is perfect for Rhubard…..says it all doesn’t it.
How difficult can a Science test be.
The answer – a nightmare.
40 minutes to complete 20 questions. Sounds easy. Questions about Pressure, Force, Springs and Moments. Not easy for Hawklad but seemed to get there. Worked stuff out in his head. But that’s only part the story. The real story is trying to get the answers to the teacher. He can answer the questions in his head but then struggles to record them. It’s such an effort to type or write for him that he losses the answers he has in his mind. He can confuse himself or just forget. Even trying to write and type as he goes along doesn’t work, it seems to disrupt his thinking. Ends up going round in circles.
The other option is a scribe. But talking out aloud makes him nervous and makes it harder for him to answer correctly. Often what he describes is different to the answer he has visualised.
How frustrating must that be.
Who would have thought a year a go that a trip to the garage would so resemble a decontamination scene from the movie Outbreak. You arrive and you are greeted by someone in a full face Perspex visor and gloves. A clear bag is held out at arms length for me to drop my car keys into. They are sprayed with something before the bag is closed. I’m asked a number of health questions and told to keep my face mask on at all times. Then ushered into the building through a roped off side door. I’m then directed to a clear screen and the masked service engineer discuss my 4 wheeled bag of rust. I’m then pointed to a tray with a car key – clearly recently sprayed. After I have picked the key up another person with full head protection takes through a separate door and pointed towards the service pool car parked in a separate roped off part of the car park. I’m then given verbal instructions on how to return with the car. I have to park next to the car wash in the roped off return zone.
Kind of makes me wish I had cleaned my car now. It is a right state. Feeling guilty about that….
And if you think that’s decontamination. It’s not a patch on what I had to go through on my return to our house. Hawklad wasn’t taking any chances.
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.