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What does your Autism mean to you?

Kitsune
over 4 years ago

Everyone experiences things differently, of that there is no doubt. I’d like to gain other people’s perspectives, to gain other people’s view on the neurotype which we have in common, Autism. Perhaps through sharing, we can gain insight and help each other, or perhaps it might just be cathartic for people to share, in any case:
What does your Autism mean to you? 

I’ll start by conveying what my Autism means to me:

My Autism means freedom, from expectations of fitting in with the majority of people. My Autism means that I’ve forgiven myself for being different/odd/weird. I am as I am, as long as I kind and caring towards others to the best of my ability then that is good enough for me. I do not need other people’s approval for the way my brain functions.

My Autism means that I’ve finally found where I belong. My diagnosis has opened up a world of other autistic people who ‘get it’, who I can speak with on the same level. It was of course, a world that was always there, I just didn’t realise that I belonged before.

My Autism means I have a unique insight into how my youngest daughter’s mind works (nearly 3, also Autistic, still pre-verbal). It means that I can read her, translate her non-verbal communication (which too be fair she’s pro at) into verbal communication for those that don’t understand her. My Autism means that I can advocate for her, with ‘inside knowledge’ to family, nursery staff, professionals, etc.

My Autism means that I can advocate for other Autistic people. At support groups for parents of Autistic children; When my Autistic friends are struggling to get to appointments or do other tasks.

My Autism means that I‘ve found a purpose building community within the Autistic population. It led me to start my group for other autistic women in my local area. Because members of any tribe  are stronger together as opposed to being dotted around on their own. Through this group I also learn about a lot of resources for both autistic adults and children and I signpost people who I meet, whether it is the lonely autistic adult who needs to find a social group or the parent who doesn’t know what to do to help their child.
I’d love to be able to take this whole advocacy thing further actually, to be able to make more of a difference to the access to resources for autistic people but this at present is just an idea.....

Parents
  • over 4 years ago

    Oh good question! I'm don't really know the answer to this if I'm honest though. I've always found myself a complex and confusing person and as I've got older the confusion has grown with me.I was diagnosed at thirteen and I'd always hoped it would make the picture clearer for me but it just confused me more because things were still as challenging as they'd always been.

    I think it's amazing that you know so much what your Autism means for you. It sounds as if you have a great relationship with your daughter as well. Obviously you're a great mother.

    My Autism for me doesn't really mean anything other than that it can be irritating and tends to cause a lot of problems for me. Though most of those problems are being fixed now. Hopefully sometime in the future I'll find some better meanings for my Autism until then I'll remain confused I guess.

  • over 4 years ago in reply to Queen

    Did you get any support as a teenager as you were diagnosed at 13?

    For me, being diagnosed Autistic has been a revelation. I have that missing piece of the jigsaw that I was never quite sure what it was. Thank you! My youngest daughter fascinates me, I like observing her 'autism in it's raw form' as I call it, before being influenced by society.

    I guess Autism can have it's irritating points. It makes us a lot for vulnerable for starters, but now I know 'why', it kind of makes it ok. I don't need to beat myself up about it any more.

Reply
  • over 4 years ago in reply to Queen

    Did you get any support as a teenager as you were diagnosed at 13?

    For me, being diagnosed Autistic has been a revelation. I have that missing piece of the jigsaw that I was never quite sure what it was. Thank you! My youngest daughter fascinates me, I like observing her 'autism in it's raw form' as I call it, before being influenced by society.

    I guess Autism can have it's irritating points. It makes us a lot for vulnerable for starters, but now I know 'why', it kind of makes it ok. I don't need to beat myself up about it any more.

Children
  • over 4 years ago in reply to Queen

    Sorry! I seem to be having some issues with receiving notifications (again!) I keep finding replies to myself from days ago that I haven't received a notification for! I have only just seen this!

    That's terrible, but sadly not surprising, that you received no support! It appears to be the norm, unfortunately! It's good though, that your parents are so supportive. 

    Thank you! My youngest daughter is amazing to watch but challenging in a way as she has absolutely no danger awareness which can be a problem out of the house. She needs an adult on 1:1 with her if we go out anywhere as she will just bolt!

    I'm glad that you are getting support now and are in a happier place.

    How do I manage now? Well, my Autism itself never really impinged on my 'level of functioning' as such, it's just the social/rrb side of things that were affected BUT I'm in the process of trying to access support, I have got some short term but want something longer term as I also have a co morbid acquired brain injury from nearly 13 years ago as well as being extremely hearing impaired. Unfortunately though, you have to fight a lot for these things!

  • over 4 years ago in reply to Kitsune

    Did I get support? Yes and no. When I was diagnosed I hoped it would answer all my questions of why I was so confused and so different. The diagnosis answered them all but I struggled to accept it. I wanted to be like everyone else and found it hard. Unfortunately school was very hard. There was no support there for me, the teachers weren’t very nice and the other kids bullied me. Eventually my mother and father removed me and decided the best alternative would be to teach me at home, their support was truly amazing and I am so grateful to them for all the support and encouragement they have given me. Sadly my gp didn’t offer any help and there was no support from anyone else either. My parents asked but no one seemed interested so they took it on themselves to support and look after me as best they could.

    You summed it up perfectly. Like you I found the missing piece of the jigsaw despite the fact I didn’t really know what it was.

    You sound like a wonderful mother. Your daughter is very lucky to have you! It must be so interesting for you witnessing her grow and evolve with her autism in it’s raw form. It must be a really interesting change to witness as she grows up. My mother said seeing me grow up was interesting because every day I was a little bit different in how I reacted to different things such as a new meal for dinner or if something was out of place. So I suppose it must be like that for you as well at times?

    I agree with you completely. Up until last year I absolutely hated the autism and the fact that I was so different. I hated it and beat myself up every day, sinking lower and lower. I got into a dark place and I’m not proud of that. But I received and still am receiving a lot of help and support now and am pleased to say that I now understand myself and the autism a lot more and am proud of who I am. Like you said, it’s ok and there’s no need to be angry or beat myself up anymore.

    How do you find things now? It must be challenging looking after yourself and your children?