What does your Autism mean to you?

I was a child of the 80’s, I don’t remember any hearing anything about autism except that there were a handful of autistic children at my primary school, in my year and the year below. I remember when I was 7, one of them and the brothers of two of the others talking about autism one day. Well the brothers were talking about their sisters being autistic then the boy piped up with “I’m autistic”. It never occurred to me to ask what it was though. I remember that same boy told me years later, when we were 14 that he was autistic. I asked my dad that evening “what is autistic” and he just said something about it meaning difficulties with socialising and emotions. Weirdly, around the same time, that same boy asked me if I had Aspergers. At the time I said no, because I wasn’t diagnosed then and I didn’t have a clue what Aspergers was. Apart from that my mother always referred to me as being a strange child and she often said I was vulnerable but she never offered any further explanation. 
I would love to get hold of my medical records. Especially the old Lloyd George cards. I do remember a lady coming to our house to do some sort of assessment when I was 10 or 11. I remember just talking on and on about my pet gerbils for however long she was there. I would like to see if there is anything Autism related in my notes from when I was a child. 
Everything does make more sense now but I still can’t help wish that I’d been diagnosed when I was a lot younger!

A mixed blessing. It has given me skills and focus, but it is also a bloody nuisance in that it has hindered social interaction including work and relationships. For everything it has given me, it has taken away another. 

For a long time autism for me meant loneliness and rejection, feeling helpless to make people to understand and to like or even listen to me. It meant learning to stand on my own. The pain I experienced in my youth.

I learned to forgive myself before I was diagnosed, out of self preservation. But the dx gave a name for and given the key to understanding why. The key to problem solve and trouble shoot my barriers.

Yes it is self-forgiveness and permission not to try desperately to fit in, to please people who I will never please and permission to recognise my validity without the sanction of others.

Yes, Understanding of my daughters from within and the insight and energy to advocate for them.

Lately it became a hope for a community of people who understand and accept, a hope of acceptance and support.

Yes, it's true that it is hard to ask for help, being seen vulnerable,

Autism is what gives me strength..

It is also a purpose. I see my daughters struggling in spite of all the support they get and there is still a lot of discrimination around. 

I think we need to change the narrative of autism, shifting away from the medical deficit model in order for our real strengths and talents to be seen for they are. In order to be seen as essential talent in employment and as a resource, not cost to society.

There is a huge and thriving autism industry and very few autistic people feel satisfied. Parents are unhappy with SEN provisions. Families are unhappy with care at care homes. Adults are unhappy with the support we (don't) get, There is no section of autistic community that feels interventions are working well.

We need to lead the development of services that are really helpful to us, driven by the understanding from within.

Kitsune, small autistic led advocacy organisations should join forces, join our voices and be a voice of neurodivergent community. Autistic people working together towards a common vision, overcoming our difficulties in communication and teamwork, getting over misunderstandings and building trust. together our voices and ideas are much stronger and more relevant. 

I’ve got over 40 members in my group now. I didn’t know any of them apart from a couple of friends I already had that I asked to help me run the group as they had relevant professional experience. The others are all women that I’ve ‘found’ post diagnosis, either through other closed autistic women’s uk Facebook groups or one of the workers at my local Mind is giving the link to any autistic women that she works with and my local autism services put the link up on their page recently and a new member has their own autism information page so they put the link up and I’ve had a few more members since then too. I’ve met about a quarter to a third of the group, either at our monthly group meetings or at coffee shops etc. Sorry, the group is an area of interest for me at the moment so I will stop myself there before you get an even more long winded description/explanation!

thank you. that's very kind

I watched a documentary in the 70's about autism and my parents laughingly said 'that's you!' But then my .other remarked, why spend so much time on children who are clearly a dead loss, when there are bright working-class kids who really could do with more investment of time and money. 

To be fsir, only the Kanner's type autism was recognised then, not the more high-functioning forms. 

Another family member started to come under scrutiny in the early 90's and I had inadvertently read some of the things that had been written about me in my medical notes: it was seen as mental illness then. But it didn't come as some resounding 'ah-ha' moment of revelation - the literature on Asperger's just reopened a host of old wounds and lead to a massive falling out with my parents, who then seemed to call into question every thing about my lifestyle all over again. But later on, a therapist where I live now told me it would never have hurt so much if there wasn't any truth to it. 

Now it matters a whole lot less. I have been self employed for over 20 years, so all fears about being unemployable are gone, though the day job can seem like a thankless task at times and only takes me away from more creative pursuits. Then again, the world of Art stinks too.

Now it just seems, all manner of well-known individuals are coming out and it seems to be pretty common. 

I am glad for something ultimately that does confer that strength of being able to think outside the box. Maybe too, finding ways to deal with certain stressful situations with less shame. It suppose it helps to recognise that some of the more difficult aspects of life, for example the bullying at school, not feeling accepted socially, make more sense, though this all came a bit late in the day.

Robin Williams comes to mind.

Excellent. Your group I'm sure will be a good benefit for all. How many in your group? Did you already have connections to others in the group?

I used to feel totally confused but now that I know that I have Autism, I have clarity too ,which allows me to forgive myself for being me. If I'm going to be weird then I may as well be confident about it :-)

(   Oh no, Me again...(!) Just here moaning, that I have never really felt "guilty" or "self-forgiveness"... I had only ever just felt totally confused and "Why are they picking on Me, even some of the teachers are doing it?!" ... but then I grew up (taller), and then it is like "I have Aspergers and I understand what that means, now. So I am now more clearly defined as somewhat different from You. You should have the capacity to adapt... or else, *By All Good And Gracious Things Great And Holy According To Current Laws Of Our Grand And Glorious English Empire*... I reserve the right to run away when You are not looking."   )

Hiya! 

We're all still finding our feet :-)

It's good that you also feel free from expectation and more able to say no. Sorry to hear that you had conflict at work! I'm glad that you were able to get over it quicker though. More self forgiveness, I like it :-)

I'm sure that when the time is right for you, you will be able to reach out to others on the Spectrum. It seems like you've got some processing that you need to do first though? Personally I get so much out of running a group for autistic women. I feel good that I'm helping others and I enjoy the friendship of other Autistic women, being able to be friends with people who I can be myself with and not worry that they think I'm weird. Plus it's a project  to focus on, which is always good!

I wish you well in your journey of autistic self discovery! I'm glad you're working towards self esteem too :-)

I'm liking that there's a lot of self forgiveness on this thread. It's good BUT It also shows how many of us must have carried around so much guilt for so many years about not being able to behave like the majority of the population, when ll along we were never supposed to behave like the majority of the population! 

Yeah I totally get the just being me thing, I feel much more like I'm 'just me' now too :-)

It's difficult when you're first diagnosed, you'll be amazed at just how much your self perception and understanding will change over teh coming months, in a good way. Autism is definitely a very different way of thinking. 

It's good to forgive yourself for things that weren't your fault or were out of your control :-)

Ah yes, we always have to think everything through thoroughly before we can make a decision. Personally I've found that I've got better at making a decision as I've got older, possibly my methods for making a decision have improved.

I tend to 'half mask' when I'm with NTs, that is I'll use a certain amount of text book social skills so as to be socially acceptable, but I'm still me, if that makes sense?

Definitely any one of us likely has specialist knowledge in at least one subject.

Oh I HATE sudden change! It completely fries my brain!! It's like all of my thought processes get scattered all over teh place and it can take hours to days to get them all back in the right order again!

Most of the time I don't feel But when I do feel, it's intense!

We always carry on :-)

Greetings DC :-) and Thank you!

I also used to get labelled shy when I was at school and also occasionally aggressive. I'm sure many people think that I'm a weirdo but my Autism diagnosis has given me permission not to care!

Thanks again :-)

Hiya Kitsune, 

Like some others, I'm still finding my feet but have a little to offer.

I have that freedom from expectation now. The family is still not quite with it yet and still suggest I do things that I never would tackle or will tackle. But I just say no now without feeling I have to give a reason. Interestingly, I've had two incidents of conflict in the last couple of weeks; one at work and one in public. I've not changed- I still can't find words to express myself under pressure and very much suffer from passive aggressive behaviour, but what has changed is how quicker I get over the conflict. Forgiving myself :) 

I'm aware of support groups in my area but I haven't made any moves towards joining them. Likewise, I'm aware of people at work who are on the spectrum (and some who are probably undiagnosed and definately show traits) but I haven't made any moves. I'm still in a tizzy really and don't want to push myself yet. Same goes with books on the subject. Being in an academic library I have access to a lot of material. I take them out but I don't make headway with them. Just shut down.

I don't know yet - but I found the book 'The electricity of every living thing' quite helpful as a way of reading about someone else coming to a realisation they were autistic and she put into words some of the things I experience but couldn't name. I'm trying to work towards self esteem which has always been very low and now I have this information that I'm not stupid or bad, my brain just works differently to most peoples. It' a work in progress though.