This is my first serious post and I feel it’s important to get these basics down now as my journey along the ASD pathway with my daughter is an important part of who I am and who she is.
I had heard of Autism and Aspergers but I’d never really thought about it before August last year. It started on holiday when myself and my husband started to notice a lot of anxiety in our eldest daughter. We are both anxious people so weren’t necessarily concerned at first but as the holiday continued it got worse. We also started to notice other things we had not thought about before.
Our holiday involved spending an entire month together as a family 24/7 on a road trip around the US. I have catalogued the trip and will probably write more about it in future but for now I just want to get the basics down.
Whilst we were away our shy, timid and quiet eldest child really started to panic. We discovered pretty quickly that she couldn’t cope with unpredictability. I also discovered that neither could I. The ad hoc nature of our trip had to be abandoned, we extended our longest stop over and I booked all our hotels in advance.
We also noticed her total lack of social skills. She has an obsession that is quite childish that we expected her to grow out of. That hasn’t happened, if anything she is even more obsessed. It was ALL she talked about. We tried hinting to her politely to let someone else speak, we then asked very politely and then we just asked bluntly and honestly. It made no difference, she seemed to be totally oblivious to us.
The anxiety also increased as the trip went on. We spent 2 weeks in Orlando where we visited Disney. Despite being a massive Disney fan she was terrified. She wouldn’t go into the theatres or on any of the rides. The only rides we managed to get her on were the ones designed for 2 year olds.
Before the holiday there had been signs that she was different but we never really thought about them, after all she is exactly like I was as a child and I’m ok, right?
Aside from taking after me our home life has been turbulent the last few year. I have lost my mum and my grandma and my husband has been ill, now diagnosed as Fibromyalgia. Obviously all these things have had a huge effect on our children. It is understandable that the eldest may be shy, upset or timid. It was also expected that she might get overwhelmed sometimes. Her school are amazing and throughout this time they just supported her, cared for her and adjusted to her with no issues. I didn’t even realise how much they had done until a few months later when I was talking to them about it. They just treated her as a child who needed help and they did everything they could to make sure she got it.
When we got home I was talking about her anxiety and someone mentioned Autism to me. I had never thought about it before but I started to do some research. As I read up on Autism and Aspergers in particular two things jumped out. The first was that she ticked most of the boxes and the second was that so did I.
In August we took her to the doctors and after asking us some questions she referred our daughter to the local paediatric unit. They asked us for more information and this was the point that the pieces really fell into place. She has just moved up to Secondary school but none of her teachers really know her. I went to the primary school and asked for help. As we sat down and went through things we all realised that suddenly everything made sense. The paperwork was filled in and sent in just before Christmas and last week I got a pile of letters referring her to various services who will help us figure out exactly what she has and how we can help her.
Now I have those pieces of paper I am starting to wonder about myself. My eldest is a carbon copy of me and all these ASD traits I see in her I can identify in myself. Some are not as obvious these days as I’ve had years to “learn the rules” of social engagement but they are all still there. I’m fairly sure that we both have Aspergers but I’m currently unsure as to what to do with this information. Right now I’m worrying less about me and more about her. This journey is going to be long and I want to help her on her path before I worry about mine.