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Its a bit shit being an Aspie most of the time
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While I agree with you mostly, I should also say it can be somewhat liberating to know why we do the things we do and not to be left sitting in worry as to the traits that seemingly plague us. For me I found it answered a whole lot of questions about my early life, though posed many more I still feel it is to my benefit knowing, because I can at least to some degree work towards being a bit more socially active.
The single subject trait, can be used to the advantage of the aspie, in that we absorb info better and quicker and can become experts in that field, and go on to having careers in the top tier.
I think the disorder is hereditary, and I believe there is some scientific evidence to support that and I also believe my Father was autistic, He rose to be principle engineer of bae systems, a member of mensa for many years,from humble beginnings felt himself he could judge things with an almost supernatural ability, if he felt it was wrong, then it was wrong.I remember he told me a story, which would have been the mid eighties or thereabout where he work out some formula, inputted that data into the computer system they used at the time, mackintosh or such, and the answer came back in conflict to his own answer. Felt it was wrong, out with the slide rule, did it again on paper, imputed the data again and still got the answer back that was in conflict to his own. So he apparently changed the computer programming to match his answer 😆 I think he was what is called savant.
He didnt really go into much detail and never to my knowledge admitted or studied autism from his own perspective, nor I think even thought that he may be.
So if a child is diagnosed early, and understanding that finding the right career will help with social inclusion, so instead of trying to point the child in one direction or another academically, more emphasis can be placed upon the area that interests then, because it is understood that you cannot really get an aspie to change his spots, and fighting against them causes more harm than it solves.
What I took away from the programme was that he had an attractive wife who had ruined her appearance with plastic surgery. Why do women do it ?
@burntembers - Thanks for sharing that, it must take great reserves of strength to provide such love and support.
The range of experiences shows why neuro diversity is referred to as a spectrum.
There are clearly extremes of the spectrum where multi agency support is obviously required. But that spectrum also covers people who should, given understanding and support, be able to live happy, independent lives. Just because you or your child's case isn't at the extreme end of the spectrum don't think support isn't justified. Fight to get it if you think it is needed, it can be a lonely place without it. It is also very hard to tell a teenager who is already terrified of being different that they might have a condition that requires professional help.
Take care of each other.
Thanks @ Grum and robola for your response. It was a bit of a stream of consciousness late last night and I did um and arr whether to post it or just hit delete. I probably couldn't have written that a few years ago but thankfully we are in a more stable place as a family at the moment (trying to ignore the covid elephant in the room). For me cycling, music and occasionally lurking on singletrack helped me through many dark times mentally!
I also really don't want to paint the picture of all doom and gloom though, our daughter is amazing and has given us many times of extreme joy, happiness and laughter that far out way the bad times. What we have experienced has meant we have seen the very best and sometimes the ugly side of society. For us the Challenging behaviour is inextricably linked to her Autism, and I guess I just wanted to highlight how Autism can mean very different realities for different people/ families. I am certainly no expert but through contact with other families and carers we have met through our daughters' school years I have seen how wide ranging the impact of autism can be on day to day life.
For anyone that doesn't fit into a society's norms it's inevitable there will be challenges ( I myself suffer from crippling social anxiety and awkwardness at times), but as a society we do have the ability to be more tolerant and understanding which can be achieved on an individual and collective level. I do think in some ways we have come a long way in the last 50 years or so but still have a very long way to go. What seems so obvious and simple to me such as not mocking, laughing or pointing at a young person 'hand flapping', rocking or making unusual noises unfortunately is still not the case for many people, and real prejudice and intolerance goes so much deeper than just that short example.
Our 9 year old daughter has had struggles from day 1, with some quite severe anxiety disorder. It’s heartbreaking. This morning she screamed for an hour all because her leggings were uncomfortable. She can be late for school a couple of times a week. At school she comes across as a different person, she maintains healthy friendships and the teachers barely know her struggles because she masks so well. She’s knackered when she gets home.
We have had similar with one of our daughters - even from being a baby she liked to be surrounded in bed by piles of soft toys or would push herself into a corner, has always found clothes uncomfortable, things having to be 'just right' (hair especially), we had a horrible time from age 9-11 with severe anxiety (school refusal, couldn't have overnight stays with friends, we couldn't go out because she wouldn't have a babysitter apart from granny & granddad at a push). Things came to a head when her head teacher made a threat that a little song routine she was going to do with friends at school assembly would not be allowed to go ahead if she didn't attend school – she threatened to kill her and that was when alarm bells immediately rang that there was something very seriously concerning going on and we insisted on things being escalated.
However now (aged 12) she has outgrown lots of the really strong emotions and is learning to cope with more minor things like uncomfortable clothes. She did have therapy for over a year (although never had a formal diagnosis of anything) which certainly helped and weirdly I think lockdown helped (despite completing primary school in lockdown and starting a new 'big' school with no transition to prepare her) – we simply think it actually reset her brain and formed habits a bit.
@burntembers thanks for sharing that. Especially that things are difficult but also rewarding. I work for an organisation that supports people on the autistic spectrum. My colleagues are amazing and I think people don’t realise how challenging small things can be to someone with autism. And yet effective, understood rhythms and routines can enable a full life. Many people on this thread have spoken about masking and that is a recurring theme for us. It must be incredibly tiring. There are very minor adjustments in supporting behaviour we could adopt as a society that would enable an easier and better quality of life for many people. The most important thing though is to recognise that each person is unique, that sounds trite but can get lost when we start to talk at a macro level.
@sparksmcguff Yes I agree greater acceptance of uniqueness and difference is key to societal change for the better.
I think it's people like yourself and your colleagues (who I have the upmost respect for) that do an invaluable job that will help enable that change.
As you and others have said, with the right guidance, support or care package people today with Autism I think have much better life prospects than in the not too distant past. Especially people on the more able end of the spectrum of whom many can live 'normal' happy fulfilled lives with just a few learnt coping strategies.
From my own personal experience though I do think from a social services perspective there is still currently some gaps in understanding which result in not always meeting the needs of those on the more extreme end of the spectrum. This is largely down to lack of funding and resources, and also sometimes due to a lack of communication between social workers, service providers, service users and family members.