invisible struggles... looking for hope

My son was diagnosed with autism at age 5. I moved him to a private nursery, and then a private small primary but when he transitioned to secondary he was bullied and suffered meltdowns. I had not grasped how his autism was playing into this as I had coped so well and had been unprepared for what happened next. He then attended a small private school which had excellent pastoral support with a teacher who was trained in dealing with autistic children. Sadly he was suspended several times and eventually expelled in his final GCSE year. I tried to fight his case, given his suspensions and expulsions could be explained by his autism and such children are vulnerable and suggestible as they are desperate to make friends and make the wrong friends who are looking for partners in crime. I worked hard on him, focusing on his strengths but also providing him with private tuition. He did well in his GCSEs and is now in his final year of A levels. I am trying to play to his strengths but he lacks initiative. Task management is difficult. He is gifted in languages but has picked Mathematics he is struggling with which will affect his UCAS points. I have extensively liaised with several universities as I feel he should have an equal chance at university given his strength is in foreign languages. I have found a course that is vocational rather than academic. However, it has been an uphill struggle and I did pay dearly for it with the job I do. I have taught him to cook and clean and he can be independent. There are many facets to him I put down to as being simply incapable but there are facets to him that are beyond brilliant. He was bullied for being fat as a child and I got him interested in researching foods and exercise and he now runs marathons. He finds the exercise gives him a focus and it harks back to his younger years where he would stand in front of me not knowing what to do next. I had to tell him what he could do and I think I've been guiding him all his life. However, I do feel he stands a chance at achieving a degree of independence. It's been a very rocky road and I have worked hard, and it has been invisible. I cared for my father with terminal dementia and mine was an invisible role. I care for my son and again it is an invisible role. There have been times when I've given up but he has pulled through. I have had to believe in him when nobody else has. He doesn't make the same mistakes, but he will make new ones and he will get burnt along the way. I believe I have given him something to focus on and I feel he is like a rusty car that needs a lot of work but will get there. I hope. In a sense, what you are describing is a brother who has been failed by society. You can only try as hard as you can, and I would suggest you keep trying. You can't go back in time and right the wrongs, but you can try and remain positive and hopeful. I have found that there are many things autistic people are simply incapable of, and hygiene may be one of them but it could also be a symptom of anxiety or depression. Unfortunately, the idea is that your brother is assumed to have capacity although the question is, at which point does anyone decide capacity is lacking? How much is it autism and is now complex and multifactorial? I would suggest to keep trying and to remain positive. 

I have been in a similar situation with my brother, aged 60 who was diagnosed last year, and diagnosed with ADHD this year. I have broken my heart for him, but im now realising he is ok, now he knows "what is wrong with him". He fets agitated when i try to help sometimes. The life i wish for him i am realising,  is not the life he wants. I thought he was hurting more than me, but i dont think he was. It was how i saw it and not hiw he saw it. 

If your brother doesnt want help, then there is not much you can do except ket him now that you are there for him. 

If he does want outside support, perhaps the local authority would be a good place to start and ask for a needs assessment. My brother diesnt want help. I think he is dealing with his struggles the best way he can and how he wants to. I know its hear breaking and i know exactly how you feel. I have had to stop trying to "put things right" for him. So as autistic, we see things differently and we have to look after ourselves x

Hi, I can resonate with what you have written.

My brother went through something similar. He's around 60, also sectioned in his teens, diagnosed as schizophrenic (I'm certain that was incorrect) and given drugs which made him very distressed.  He was given a diagnosis of autism only a few years ago, I believe!

Also, my parents tried their best until my brother walked away from the family aged 30 and he severed all future contact with all his family. I have felt grief and sadness all my life, partly because I miss the brother I knew as a child and also because he has inevitably been so alone in the world. My mother is still alive but I tread on eggshells if I talk about it. Although without contact, we are aware of my brother's situation and he doesn't cope well.

I now have a son who appears to be similar to my brother. As parents we have chosen a different path in case that could help, but sadly the outcome looks as if it might be similar.

My brother was bright and pushed to excel and achieve academically. My parents were strict at home with all of us. He was bullied at school and was confused and miserable. My son is bright and he's been home educated where he was allowed to follow his choices and his timings. We've had rules and guidelines but we've been patient and understanding. The outcome would appear to be that he is also confused and often miserable. He is still at home aged 20 and although we are trying to find housing and support for him, there appears to be little out there to cope with the demand. We are also noticing that although he is old enough to make his own choices, he is not good at looking after himself. He has health concerns due to doing little exercise and we still encourage him to drink and eat every day as he often appears indifferent to making what we would consider sensible choices. Looking to the future, we are already seeing that we won't always be allowed to help him make those choices. As he gets older, he and everyone else will decide that it should be him making decisions, even if they are bad ones. It is with fear and sadness that I contemplate that outcome. I agree that it is difficult letting someone choose self neglect.

Thanks for sharing your post. It helps me process my own sadness and frustrations. I feel a great loneliness a lot of the time. I'm also struggling with anxiety and depression because of the idea that we are so powerless to help these vulnerable people that are close to us.

Hi, thanks for your reply.

 I agree that a choice made from a place of trauma and fear is not really a choice.

I've voiced these things and pretty much pleaded for support that acknowledges past trauma and enables real choosing.

I'm currently trying to suggest moves towards better diet, personal care and a better quality of life....

 but my brother seems to find any suggestions unsettling and will successfully reject any opportunities for change.

He has removed consent for any professionals to share info with me.

I manage to speak with him by phone most weeks.

I acknowledge your strengths in finding your own way through and wish you all the wellness and joy we all deserve.

I'm sorry to hear of this struggling. 

Unfortunately, I very much doubt he's making well-informed choices. If an individual feels trapped, and decide the least of two horrible outcomes, is that actually making a 'choice'? 

The term you might be looking for regarding where he's at is professionally called "Absent Insight". Anyone with a lack of knowledge, who didn't receive proper communication (and for Autistics, we use language different enough for it to be alien), won't be able to make an Informed Choice.

I feel for you, I'm part of this generation. And though I've had enough intellectual abilities to be able to spot the lack of ethics in what might be socially deemed 'moral', I've dealt with enough struggles which continually keep me marginalised to some degree. 

I think the key here is to find out if he wants to live a better life. But this may mean changing his diet, learning a new habit - but doing things one at a time. Most of us, from what I'm hearing, report auto-immune and dietary issues. I've found a FODMAP diet that works for me, but grain free. I wouldn't really wish it on anyone, but there are many here who have been forced to work these problems out alone.