New user - Coming to terms with a lack of support both inside and outside the family

I (31m) was diagnosed with Asperger's Syndrome when I was 11 years old. In my adolescence, my mother and school did nothing to help me develop as a person, and instead sequestered me to my room or to the support facilities of the school, to ultimately be left to my own devices. My mother taught me that my autism was something to keep private as I'd be bullied if anyone found out about it.

When I turned 16 I moved to Glasgow to live with my dad and his soon to be wife. My mother refused to share details regarding my diagnosis, so for a long time they believed my condition was a lie and that I was just suffering from teenage depression. Eventually during counselling with the mental health team I convinced my dad that my diagnosis was real, and since then he and his spouse have worked hard to be supportive of me and my condition. I know that sounds juxtaposed to the subject of this post, but I'll get to that in a moment.

For the first three years of living in Glasgow, I attended college part time studying Higher English, Psychology and Sociology, My folks pretty much did everything when it came to applying to college and getting accepted. But after three years, they stopped helping. Ever since then, the only times they've really actively helped me was with maintaining my financial support. But that's come with its caveats.

You see, ever since gaining financial support, everything about my life had to be restricted to whatever would keep me qualified for the level of financial support I was recieving. I couldn't do more than part time at college. I couldn't learn to drive. I couldn't do anything that might give the government cause to revoke my support. And so, sufficiently intimidated, I continued to live in the box of being sequestered into my room and left to my own devices.

Now I'm 31 years old, and can say that at no stage in my life has anyone I was supposed to be able to count on ever attempted to raise me or offer me guidance to help me become an actual functioning adult. Lately I've taken to challenging myself to face new experiences, and from them have appealed to my folks to help me become more independent. In that, they've at best offered to foist me off onto others, and at worst warned me of the risk to my benefits if I step outside my box.

I feel lost. There's no part of me that believes for a second that anything I can try to do will lead to good things for me. That even if I succeed, I'll never feel secure or content with my life. But the alternative is to keep doing nothing and wait for the inevitable problems ahead of me. Homelessness and death on the streets, or an expedited exit from life. Every choice feels wrong. Do I make my life harder and worse now on the assurance from others that at some point I might feel good about it? Or do nothing, try to enjoy the sedentary life for as long as I can, and then choose my exit when that way of life is no longer available to me?

I know the answer, of course. I have to make changes. But I don't feel good about any of it, and no one in my life, who's capable of helping me, wants to. I've spent far, far too long waiting and hoping that someone would come through for me one day. And I'm so set back that I have to constantly ignore the voice in my head trying to convince me that it's already far, far too late to do anything about it.

Sorry for the glum monologue. Maybe someone will find this relatable.

Parents
  • I hit this point at 26, with the only genuine support coming from my stepdad’s sister. I’ve discovered it’s that these people, my family, and the world around me, know nothing of autism, and have no idea of how to properly help us in any way that is effective. We are left to figure it all out by ourselves.

    I think locating local autistic groups, where you can meet others like you, may help. It will provide a support network, and it will provide you with a point of guidance, as well as positive reinforcement from those who understand. Well, it should. If it does not, it is not a good group for you

    The problem is, being autistic, you’ll probably need support with this step, as I do. For me, it has been a battle with the NHS to finally find a local company, comprised of neurodiverse people, that is willing to fight on my behalf. One day, at a mental health review at a psych hospital, I begged for help, and I cried that I had violent thoughts, and that I didn’t want them, and that I knew I needed help, and then I was finally put into a temporary-stay mental health facility, and waiting bed at my local psych hospital. It has only been through this happening that I came into contact with this company, and these people, who had a genuine desire to help me, and were not being limited by the NHS in their ability to do so.

    I have no idea how it will go for you, but I hope you can get it figured out. I hope my story offers you some direction. 

Reply
  • I hit this point at 26, with the only genuine support coming from my stepdad’s sister. I’ve discovered it’s that these people, my family, and the world around me, know nothing of autism, and have no idea of how to properly help us in any way that is effective. We are left to figure it all out by ourselves.

    I think locating local autistic groups, where you can meet others like you, may help. It will provide a support network, and it will provide you with a point of guidance, as well as positive reinforcement from those who understand. Well, it should. If it does not, it is not a good group for you

    The problem is, being autistic, you’ll probably need support with this step, as I do. For me, it has been a battle with the NHS to finally find a local company, comprised of neurodiverse people, that is willing to fight on my behalf. One day, at a mental health review at a psych hospital, I begged for help, and I cried that I had violent thoughts, and that I didn’t want them, and that I knew I needed help, and then I was finally put into a temporary-stay mental health facility, and waiting bed at my local psych hospital. It has only been through this happening that I came into contact with this company, and these people, who had a genuine desire to help me, and were not being limited by the NHS in their ability to do so.

    I have no idea how it will go for you, but I hope you can get it figured out. I hope my story offers you some direction. 

Children