I'm no mental health expert, and my experience of mental health issues is limited to specific cases. However, I've made a few observations that might be helpful.
First, some background.
My brother has suffered from a debilitating mental illness for over 30 years. This has stopped him having a job, forming relationships, living independently, and enjoying a typical way of life. He knows what he's missed out on, and continues to miss out on. It's completely devastating and heartbreaking for him.
1. He is not stupid
His mathematical brain is like few I've ever encountered. He has 2 maths degrees, but his skills were evident years before university. As a primary school boy he sat on his bed working out prime numbers.
Rubik invented his cube in 1974. My brother, at the age of 8 or 9, could solve the cube easily, regularly within 15 seconds. I can't remember his record time. He would take the cube apart, soap the pieces to make it move more freely, and then put it back together in order to beat his record. Friends used to bring him their cubes to sort out. Sometimes they would try to trick him by taking pieces out and putting them back in an unsolvable configuration, but he would know immediately he looked at it. He can still solve it, though due to medication and motor skill impairment, it might take him a minute now.
2. He is an adult
He hasn't been able to have the life experiences that many of us have been blessed to have, but he is a grown man with similar feelings, concerns, desires and expectations. Most of these have been thwarted. But he still has opinions and makes choices.
3. He knows he's not well
This is one of the most heartbreaking things. He knows when his mind is confused. He knows when his reaction hasn't been 'normal'.
4. His mind is overloaded
His mind is completely full of everything that has ever happened. He remembers everything. His mind links words, subjects, events, thoughts, in a way that is difficult for others to follow, but make complete logical sense to him.
It's as if everything is still in the forefront of his mind, and nothing has been stored into 'long term memory'. So he'll suddenly express anxiety over something someone said 50 years ago which the majority of people would have completely forgotten.
How to help
My brother is a human being equal to all other human beings. His rights are the same - access to medical care, access to the care system, access to social security. At least, they should be. However that doesn't seem to be the case. So there are a few things to say to those who interact with people in my brother's situation.
1. Don't treat him as if he's stupid
He's probably more intelligent than you are. So don't assume he doesn't think about how you're treating him. During his recent stay in hospital he phoned me and said he'd been told "We're going to give you some happy pills." That perturbed him because he didn't know what they were, or what that meant, so he wasn't sure whether he should take them. So explain what meds you're giving him, and why, and how they might help him.
2. His life and health matters as much as anyone else's
His dentist left him with very ill-fitting dentures that damaged his mouth, after having already made him wait 6 weeks without them. Conversely, my dad's dentures are returned to him asap and within a matter of days. And if they were painful or didn't fit, they would be sorted out. If you need dentures, 6 weeks without them is a long time. I'm appalled that in the dentist's view my brother clearly didn't matter.
3. Talk to him and treat him like you would any other adult friend
Listen to what he says. It might be difficult to understand, but do try. Don't dismiss his concerns. Talk them through with him. You may not know exactly what they are, and you may need patience in trying to help him through them. But don't assume he's talking nonsense, or that something that happened 40 years can't possibly matter now. To him it does. He told me on the phone that he was worried about a conversation with an aunt and he didn't know if she was cross with him. This conversation took place when he was about 6. Many of his fears and concerns can be allayed by talking things through and reassurance.
Don't talk over him. Now, we're generally bad about this in our family. Much of it is to do with our widespread neurodivergence and the difficulty in knowing when it's our turn to speak, or how long to speak for. However, my brother gets talked over a lot. Because people don't understand his thought processes they may assume he's just talking incoherent nonsense. I can assure you that everything he says is the upshot of complex thought processes unique to him. If you wouldn't talk over other friends, don't do it to him. Encourage him to explain more fully and coherently what he was saying. Engage him in the conversation. He isn't invisible.
4. Try to understand how his mind works
Be very careful what you say. If you say something to him he will take it literally. I'm similar. So he told me the other day that he wasn't allowed to talk to one of his house mates. I asked him why he wasn't, and he told me that somebody had said "Don't talk to him". Now I very much doubt that the instruction was never to utter a single word to the person in question ever again. But that's how he's taken it. Similarly, he told me on the phone that I'd previously said not to do something. What he'd understood was not what I meant at all. It's important to make sure he understands what you mean, not just the words you say. This can be difficult and takes concentration and time, but it's helpful for him.
Don't tell him off, especially not like you might a child. Sometimes his actions are outside the realm of what's considered normal, acceptable behaviour. Sometimes he may accidentally break, drop or spill something. All of us do these things from time to time. However, his autism, his illness, and his medication side effects mean his body, mind and emotions are more often impaired compared to a neurotypical person. And if he breaks something, don't have a go at him. It's not carelessness. His reaction to a situation may not be understandable to you, but there will be an explanation in his mind as to why he was made anxious, fearful, defensive or agitated by the situation. He knows if he's caused harm, damage or distress, and he will feel awful about it, but probably can't help it. This isn't to say you shouldn't agree or point out that it was a bad reaction. But instead of telling him off, talk to him about what made him do whatever it was. Then help him to see that perhaps he misunderstood or over-reacted to whatever triggered it, and if the trigger happens again, to know better how to deal with it.
..........
As I said to start with, these are just some of my personal thoughts and observations from my own experience. There are plenty of other things that could be said!
No comments:
Post a Comment