Autism is so misunderstood
Patience comes with age. Well, it does with me. The realisation that anger, frustration and impatience doesn’t get you very far. I have been told that I have ‘great patience’, but between you and I, this wasn’t always the case. Having a brother with Autism has always tested my patience and it’s only recently that I have actually been able to work out what makes him tick. Although that is often subject to change and requires a dose of more patience.
I have an autistic brother
When I was a child, one of my earliest memories was bringing my younger brother home from hospital in Bristol from an operation on his cleft lip. I must have been about three years old. My parents had no idea at that time that he would develop ‘learning difficulties’ and be on the autistic spectrum. In fact, when he was young there wasn’t a spectrum at all. You were either dyslexic, or not. If you were nearly dyslexic, there was no help at all. There were remedial reading classes at school, which brought on bullying as anyone who attended was labeled as dim. Throughout his life, he slipped through the net and the so called system, as he wasn’t quite bad enough.
He just came across as being really annoying!
He fell behind with his reading at primary school so badly that he wasn’t learning at all, and he had a stutter so went to speech therapy, but his attention span was limited. To us he was ‘cack-handed’ or now as we know more, he has dyspraxia. He used to say really daft things that made no sense and he used to dismantle toys and games but was unable to put them back together. My parents would spend money on new toys and games to find something he could do, but he normally ended up swapping new things for a so called friends old toy, just because the friend had taken advantage of his gullible state.
It didn’t help him having an older sister who was on the go all the time. I used to finish his sentences when he stuttered as I thought my parents were daft not realising what he was trying to say. Often I would just scream at him for being ‘stupid’. I didn’t know any better, after all, I was only a child, and he wasn’t diagnosed with a condition that we could work with and understand.
Everything went down hill from there
It was really when he was at secondary school that things took a real turn for the worse. School work was mainly given in dictation, and so he fell further and further behind as his reading and writing was very poor. He would always do what people told him without understanding the consequences, so he often set of fire extinguishers for a ‘dare’. I had very little patience as a teenager, constantly being told at school, ‘guess what your brother has done now….?’
Soon my parents were asked to remove him from school, but he ended up in an amazing unit for children who were having difficulties. He did well and managed to get on a YOP scheme. For those of you who are younger than me, that’s a Youth Opportunity Programme! An old form of the YTS.
On the way up…. and then…
In his early twenties, he had a job, and rode a motorbike. Always a bit gullible, always a bit ‘odd’ to many, but not doing too badly. Then everything changed. He had a motorbike accident in which he broke both his arms. He couldn’t work for a while and eventually got in with a bad crowd. The type of people who took advantage, and encouraged him to give them all his money because they were ‘worse off than him’. Eventually he moved to the next town to get away from these so called friends, but sadly people like that are always attracted to those who are less fortunate. His disability became worse, but still not bad enough to be eligible for any help. Eventually, over the years he was offered some help from social services, but as with all areas of mental health, funding is low and he was always a border line case. He didn’t quite tick enough boxes to get a regular social worker, and when he did, they would visit him until a time quota ran out and then help was withdrawn. He was lonely, and loneliness made his condition worse.
For me, it was a bit of out of sight out of mind.
Sometimes he would allow me to visit, other times he would ignore me completely for months, even years. His condition became worse, and over the last five years it became quite concerning. He developed severe paranoia and day to day living for him was incredibly challenging. He thought his TV was bugged and the government were listening to him through his phone. These items would often get destroyed in fits of rage. (We have replaced several tellies!) He truly believed that the supermarket had a special cordon around it that monitored how much of his benefits he spent on food. His GP wasn’t interested at all, and there just isn’t enough funding, or help for autistic adults.
I used to wait until something major happened and then I would ‘mop up’ the fallout. He didn’t want any help from his family as he wanted to be independent, so we rarely saw him. A couple of years ago he agreed to have a medical assessment and began to take medication for his paranoia. What a difference! Then, he said that if you have a headache you take tablets, but when the headache has gone, you don’t keep taking them. True…. very true. So, in his mind, he decided to stop taking his meds, as he was now ‘better’.
That was 18 months ago. There was a downward spiral……
Trouble with police; problems with neighbours; poor health; anger; damage to property; severe psychosis.
It had to get this bad before anything could be done. He needed help. I understand that social services are restricted in what help they can actually offer. I am extremely grateful to a recent chain of events that has meant he has been helped in hospital and is now on a mild medication that has quietened the psychosis. With this out of the way, his autism has become so much more visible. I have learnt so much. Now I can see so much clearer how his mind works.
I have learnt about filters
He doesn’t have the filters in place that we do. I have visited him more in the last month while he is being cared for and assessed than I have in the last two years. I’ve seen him angry, confused, frustrated, and then a little more balanced. I’ve sat with him while he has ranted, and I’ve managed to work with it rather than push against it.
Different temperature controls
I discovered he layers his clothes because he doesn’t feel temperature like we do. He knows that if he goes out he needs a coat, no matter how many clothes he already has on.Going out means a coat. He doesn’t do any laundry unless its an emergency, so me trying to get a bag of washing off him while he was in hospital for four weeks was futile. I asked him when does it become an emergency? ‘Not yet. It’s not brown yet!’ Who knew? He’s 47 years old and he has always thought things only get washed when they are brown.
Brown = Dirt
That’s logical. He has no concept of dirt on the inside of his clothes. Instead of me getting angry because I want to do the washing, I have learnt to let it go. He’s got to this age not washing his clothes we do. I’m sure in the grand scheme of things it doesn’t really matter.
I’ve learnt not to argue.
You can’t argue with him. He doesn’t have the same filters in place remember. I have learnt to listen. I’ve learnt to back off and not try to make him see what I think of as sense. I can see his body language now and see when his mind is full. When he screws his eyes up and holds his forehead with one hand, that’s way too much for him to deal with. So back off. Try not to give him too much to think of. Allow him a sleep in the afternoon.
He takes things literally
He likes to play chess and is very good. He’s teaching the nurses! He takes words at their literal meaning, like being troubled by a ‘Devils’ Chocolate Frappe in Coffee #1. He is compassionate towards others and sponsors an African child, while also liking to recycle things, and he doesn’t want for more clothing than he can actually wear! Only needing one pair of shoes – try to buy him any more and he will get really upset. He likes to eat when he is hungry and not when a meal time dictates. We could learn a lot from him really!
He is now getting some help, but it took a major incident to get people to take notice. The story is on going. Where will he go from here no one knows, but for the moment he’s safe, cared for, and eating.
I am thankful to the clients I have recently asked to reschedule appointments in order for me to attend meetings, and I am very grateful that I have the skills and tools in my box to sit back, breathe, and allow the process to unfold in a mindful way. I certainly needed to practice my yoga and have a regular massage to keep my own sanity in place over the past six weeks!
#psychosis #adultsocialcare #mentalhealth #paranoia #autism #mindfulness
