Connecting two sets of dots.

   Over the last few years I have spent countless hours reading books, articles and blogs about autism. I was looking for answers as to what was going on with my daughter. In those words I found more and more reassurance that I was right. S wasn't like the kids in her class or the other kids in the park, she wasn't a bad kid and we weren't bad parents in fact nobody is to blame, her differences were hard-wired into her brain. They are part of her neurology and that will never change. After finally getting a diagnosis I began to read for a different reason. I wasn't looking for similarities that I could arm myself  with to fight those who doubted me. I was reading for clues of how to cope as a family, how to make life easier for S and the rest of us and to get a deeper understanding of my daughter. What I started to find was that a niggling thought I had often pushed aside was beginning to become more of a reality.

 
I have a very dear friend, one of many I had not met in real life but had shared so much with via social media I felt very close to. This friend had waited patiently for me to approach her when it dawned on me that S may have autism. She answered all my questions and gave me invaluable advise on my rights within my battle to get S's needs met. One day we finally got to meet and we spoke just as easily as we had online. It was that day as I stood in her kitchen that the niggly thought, the one I had pushed to the back of my mind, the truth that I was denying myself of suddenly became a realisation. We stood talking about how I struggle to hear someone talking if there is a background noise and she said to me 'That is a sensory issue, we struggle with that sort of thing.' I thought by 'we' she meant those on the spectrum (which she herself had just discovered she was). I realised that another person could see that I myself had traits. It really made me finally begin to think about me and I will always be grateful for her comment. She may not realise how much of an effect it had on me but I want to say thank you, you know who you are. 

 
Now it was time to research for me. To look for me among the words of others. It wasn't hard to find as I knew I had seen myself among the words of many adult aspies and I continued to find more and more. I finally realised why I had always felt like such and outsider, why I always failed to make and keep friends, why social occasions filled me with such dread and more importantly that I wasn't alone. At this stage it was nothing more than a thought maybe even a hope that I could begin to understand why I am so strange. 

I spoke to my husband and he told me he could see it in me as much as he could S which was a bit of a shock and set me back a little. I started to doubt my thoughts again just like I had with S only a few years earlier, I started to pick out all the things I did/didn't do which meant I had to be NT. I got all the way through school with nobody noticing I was odd (well the other kids did but not the teachers), I am all grown up with kids of my own and could pass as normal right?
 
Then something happened, something that upset me so deeply I realised just how differently I am wired. My husband finally talked me into joining a gym, well at least going for a trial. Before I could go to a gym though I needed to buy workout gear, the thought of having to do so caused me great panic. I had no idea how to dress at a gym and I was dreading how odd gym gear would feel. Off to a discount sport shop we went, as soon as I walked through the door I wanted to run back out. Clothes of all colours were hanging right to the ridiculously high ceilings greeted me. There are no aisles to wander up and down in this shop just clothes racks which appear to have no order and are haphazardly strewn around. I immediately felt disoriented and confused. When my husband lead me to the ladies clothes I flicked through the clothes trying to list what I needed and what I could afford and imagine how each item would feel. There was no way I would try anything on as by the time I had half heartedly picked some clothes I needed to find trainers...and that meant dealing with a pushy guy that wanted to try sell me more expensive shoes than the pairs I wanted to try. I finally found a pair that didn't make my feet feel strange and handed the others back. Pushy sales assistant was at it again, telling me about special soles and sports socks and I just snapped 'I just want the trainers, nothing else.' He scurried off to put them behind the till where yet another assistant tried to sell me a 'bag for life' which I bluntly turned down much to my husband's amusement. When I left my head was rushing and I wanted to scream and I was still yet to try on the clothes I had bought!! When I got home they didn't fit and my short fuse met it's end. I snapped at hubby to take it all back and use the money to get himself something because I was never going back to that shop and nor was I joining the gym! I had shouted and still felt uncontrollable emotions running through me, I ran to my bed  and hid under the blanket and as I wailed a cloudiness filled my head. I couldn't stop it or rid myself of it and it drained all of my energy. The next thing I knew I was waking up. I felt very lost and my head hurt but some of the raw emotion had settled and hubby suggested we go change the trousers and get some food. I re-entered the shop alone but this time I had one aim - find some trousers, exchange and leave and the thought of a meal I didn't have to cook got me through it. I was dazed for the rest of the day but the next day it clicked...the events had caused me to meltdown and then shut down. Something I had witnessed in S so many times and deep down knew I understood on a deeper level that just reading about it.

  My new thinking set me looking for more evidence and I stumbled across an online AQ (Autism quotient) test. I scored highly on this and I finally decided now was the time for me to get answers. I know many adults are happy to be what is referred to as self diagnosed but this would never be enough for me. After speaking to my husband and best friend I decided to visit my GP armed with my AQ score. It was very nerve racking but luckily my GP had known me all my life and knew of my history of depression and was more than happy to refer me to the adult ADHD and Aspergers team. About 3 months later I went for a screening appointment. It was a very nerve racking experience and I ended up crying and shaking as soon as my psychologist spoke to me but by the end I felt much better. I had enough indicators to warrant a full assessment and was told when that would be, how long it would be and was sent some more forms to fill in in the meantime.
I have my assessment in just over 3 weeks and I waiver sometimes and have moments of doubt but I will be happy when it is over and am hopeful for some answers. I have written some things down that I may not remember during a face to face appointment and am trying to stay optimistic that yet again my gut feeling will be right.

Hurt Pride

S travels by taxi to school. It was something I really struggled with but seeing how much the journey settles her and how amazing her relationship with her chaperone is those worries are long gone. S has the same driver each day and so far no issues. However sometimes she has to have a substitute driver. S is always pre-warned and still has her regular chaperone. Friday was one of these days S was to be bought home by a different driver (we'll call him Cabbie).

S came home and as soon as she stepped through the door she started crying. She told me how Cabbie had told her dinosaurs never existed. This statement to S was devastating. Dinosaurs mean more to S than most could ever imagine so to have a grown man tell her they were never alive it broke her heart. It would have caused a deep confusion as S believes what she is told especially by adults. So how can someone say they didn't exist when there are so many books and facts about? How is it possible that palaeontologists dig up fossils if they didn't exist? After we managed to calm S and reassure her that this man was wrong we started to find out what had happened. 

S had asked Cabbie some dinosaur facts things like 'What does triceratops mean?' I can only assume this clever little girl made Mr Cabbie feel a little dumb so as an attempt to recover his damaged pride he said they never lived. S started to argue and despite her chaperone telling her not to listen to him, this man that called her a 'nasty little girl', really got to her. 

We made a complaint right away to the taxi company and were assure the manager would speak to Cabbie. If this man cannot get along with children he certainly should not be assigned to the school runs of sensitive special needs children. He would not have spoken to a child that way if their parents were present. I sinerly hope he is never sent to transport my daughter again because I will not be allowing him to do so. 

We have tried to use this experience to teach S that grown ups are not always right and that if one does upset her and she tells us we will try to sort it out.