The feeling is growing stronger in me, that the one thing adults and adolescents (and probably even children) on the spectrum need more than anything else is mentors.
By ‘mentors’, I mean people who can help us find our way through the often bewildering, frightening and overwhelming maze that gets called ‘life’ or ‘the world’. Such people could be either understanding (and knowledgeable) NTs, or older people on the spectrum who have also acquired knowledge and/or solid skills and want to pass them on. The role could be a formal or informal one, paid or volunteer, under the auspices of some organisation or (possible, but less likely) government department, or simply personal or family connections.
A mentor could help us auties in lots of ways, but here are the main ways I feel they could be of use to us (I’m still developing these ideas, so don’t take this as the definitive list) :-
1) Acting as an advocate or (peer) support when we have to deal with government departments, banks, doctors, landlords, prospective employers, universities, etc, etc. Some autistics have people doing this role for them already.
2) A sort of ‘go-to’ person to ask all those thorny ‘social savvy’ questions of – “Why did she say that?” “Why was what I did wrong?” “How do I ask them out on a date?”
3) A similar sort of person to ask practical questions like - “How do I go about doing such-and-such?” “Who do I see about this?” “What does this letter mean?”
3) A sort of ‘co-ordinator’ or ‘liaison’ person so that, even if they are not able to help us directly, they can point us in the direction of those people and agencies who can.
4) Someone who can either direct us to online or face-to-face groups for those on the spectrum, or co-ordinate such groups, or provide/arrange a place for them to meet. Note: if such people are not on the spectrum themselves, I would expect them to act as the initiator only of such groups, and not to actually join in the meeting, or try to ‘manage’ it, or us, in any way.
The main thing about such mentors is that they help us in a positive way. My definition of ‘positive help’ is assistance that empowers the individual. By this, I mean it helps us feel stronger in our selves, increases our independence, self-confidence and self-esteem, grants us more control over our lives, and leaves us feeling good about the relationship with the mentor. ‘Negative help’, on the other hand, is ‘help’ that leaves us feeling weak, more dependent and ‘needy’, feeling bad about ourselves, and ambivalent towards the person supposedly ‘helping’ us.
Many a time in my life, I’ve wished for such support, even looked for it, asked people for help, but either they weren’t willing to, or didn’t understand exactly what I needed, or in what form I needed it. Sometimes I was even criticised simply for asking. It has meant a lifetime floundering around trying to find my way, making heaps of mistakes that, if they could have been avoided, would have made my life so much easier. I would probably not be in the position (of poverty, joblessness, poor health, etc), that I’m in, if I had had such help. I’ve learnt a lot of skills along the way, sure, but I did it the hard way – the extremely hard way. I would love it if both present and future generations of autistics didn’t have to struggle and stumble through life as I did.
I am unable to write a rational comment because I am so damn excited about this blog post!
ReplyDeleteI am employed as a mentor, although so far I have only offered one-on-one meetings and groups. Too many autistics are caught up in the mental health system that is not understanding the cause of the symptoms and/or provides incorrect treatment.
I am really enjoying your blog! Great work!