What does your Autism mean to you?

I'm a about to start reading about the Portugese Revolution ,of i think the 1970's

It's good that you've developed a niche who 'get' you.

How old were you when your father died?

I think that unless kids are 'high needs' then there is little support for them once they leave the education system, sadly!

Good Answer :-)

I'm sorry to hear that you feel isolated and receive harsh comments when you are working on your Land Rover or cycling, people should leave you alone!

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!

My autism means that I'm naturally 'Out there' and don't need alcohol, nicotine, or hallucinogens to 'trip.'

I have contact with the outside world, living in a rural location. But I have developed a niche who 'get' me.

I first knew about autism in 1991, whenever my mum read an article about kids with Asperger's Syndrome in a women's magazine and identified myself in what she was reading. Beforehand, I had 'special' tuition outside of my classroom - for behavioral reasons. But TV had too much power over me as a child. I hated being smacked as a child but can look back at that with no regrets. No one 'told' me what I was supposed to do; my father's death in the Troubles didn't help.

I always feel that kids with autism are thrown to the lions after they leave school/uni.

"The things that make me different, are the things that make me me..."

- Piglet

Sorry, I've only just seen your replies here ( and some replies from others on this post - the workings of this forum never cease to amaze me!). 

I'm sorry that you've been having such a tough time recently! Coming to terms with an Autism diagnosis can be really tough for some people, without a separation to deal with on top of that! 19 years isn't a short relationship either so I imagine that you're grieving both for the relationship as well as with knowing that you're Autistic? 

It's difficult when you're on a very different page to your spouse. My husband and I have been on very shaky ground for several years now. Mainly because he's a total narcissist. Every difference of opinion or thing I do that goes against his will gets blamed on my Autism, before my diagnosis, my brain injury got the blame. Even him shrinking the kids clothes by putting them through the tumble drier got blamed on my Autism. Who knew! My Aspie superpower is apparently shrinking clothes! He doesn't 'get' Autism at all, which is even more concerning that our youngest daughter, who turned 3 yesterday, is also diagnosed with Autism (with language delay and I think she also has intellectual delay). He does annoying NT things too. Like incessant self aggrandisement. He's all about 'making a difference' and looking good to people external to the house at the expense of myself and the children. I really don't understand the whole 'look at me' mentality!

Sorry! I was trying to be supportive but have ended up complaining about my own situation. Do you have any support or anywhere that you can draw strength from in this difficult time?

Hello, 

I do hope you are able to take your idea for advocacy further, something that is much needed. What does my Autism mean well it means being able to problem solve and also to be focused until the issue is resolved. It means wearing my ear defenders and sunflower lanyard with pride and to ignore the looks I get. Sadly it also means I feel isolated at times living alone and trying to cope with all that life throws at us. It can mean having to be on the receving end of some harsh comments when trying to work on my Land Rover or when out cycling.

Nick

Sorry I've only just seen this reply! No worries! It was a long time ago now, March 2007. Although it's left me with a load of executive function issues on top of Autism! Sorry to hear about your mum!

What era of history are you interested in?

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?

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.

When my brain starts getting flooded with negative, anxious thoughts. I try to distract myself, either by going out to do something or just finding something to do, no matter what that will take my mind off things.

Your analogy actually makes complete and utter, perfect sense. I guess that I am experiencing some of the same but I haven't quite got to the point where I can just bop around being me :-)

I'm glad that you found some hope in this thread. My youngest daughter, 2 years 11 months is also Autistic. But I support her to have the very best life that she can. You just have to work with Autism not against it.

I do sometimes feel a little bit like this too, when I am with a group of NTs and feeling left out of the conversation and so instead opt to observe them. What does all this waving around of their hands mean? What are they doing with their eyes? Why are they all talking in such high pitched voices. I know why they are different though, because their brains are wired differently to mine so to them that is their style of communication. It's a little bit like being a visitor in a foreign land. 

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.

:) That's great to read. There must be lots of these little independent setups around doing lots of good work and getting people together. I think I'd prefer that informal arrnagement than an organization. Coffee Shop arrangement is even better :) 

Not trying to be a hero..but should you ever want to confide or just generally let out some steam, chat, ponder....by all means make contact as im generally around!

I do honestly believe though.. that NT and gps etc will never be able to grasp at all, the sheer hatred we can have towards ourselves and the constant and varying lack of focus and then intensely life draining obsession loops....to name but a view of the symptoms we all have to endure!

Dont give up hope....lets try somehow to find a gentle coping mechanism...A letting go so to speak!

For the last 2 years...Especially this last month...im greatly surprised im still here...Never the less , i obviously am!

Im not sure if its the fight and hatred thats driving me more into depression or the relentless symptoms of the Autism....ie how i deal and react to it....

Im not saying we can cure ourselves at all....but im trying or rather, letting go of chasing every thought and dissecting it to the point of its non existence...then left there profoundly emptied!

I seem to kill most things around me! Through whittling, worrying,,,,,and thirst to know it all etc etc,,,Obsessive interests!

Ive crashed at least 6 times extremely heavily in this last month+ alone due to a recent separation of 19yrs...my ex partner hated and hates my diagnosis...i received last June(Autism f84.)

Due to physical issues also-Fibromyalgia/cfs and spinal stenosis(disc pushing on spinal cord)  i once stated to her "im not bothered if i never have another holiday again" and i sensed then  that we were on very different pages....

I always found her slightly dumb but very conniving! In truth there was alot i disliked about her...and she was obsessed with holidays and all the NT events of normality that i never really have been.,

So the above is my poor attempt to explain to you , theres been such a terrible muddle recently...and im not sure i have to feel to guilty per se, as i have been.....The diagnosis came parallel to my separation to it couldnt have come at a worse  time...An unloving family around me...and ex who dispised my diagnosis...Now im living alone, no friends literally, and literally no family and licking my wounds somewhat.

Even with out all these maladies, The autism alone  drives me to despair... Though i am forced to be alone due to my Autism....i dont necessarily enjoy being alone...

I have no peripheral company....I sometimes see the neighbours cat, but thats it.