Aspergers Syndrome

Monday, May 05, 2014

Hello Lovelies,

Our eldest daughter Cole was diagnosed with Aspergers Syndrome when she was a teenager and I am often asked questions about Coles AS and her diagnosis so today I wanted to write a post about our experiences of Aspergers Syndrome. Please feel free to ask any questions in the comments.

Our story ~

Cole or Nichole to give her her 'proper' name is my eldest child, I had a normal pregnancy and wonderfully quick labour with Cole,  she developed normally but was extremely quick with her speech and people always pointed out how clever she was, I put it down to me being a chatter box and always chatting and reading to her. As she grew older I didn't ever have any concerns about her, we used to say she was quirky and a "funny little thing" she used to come out with some very random things and do some very random things but she was just Cole. When I had Alicia or Lissy as we call her,  she was also very clever and could speak extremely well from a young age. I did notice that when Lissy played she played much more imaginative games than Cole ever did, Cole never played dolls or mummies, never wanted a dolls pram and baby for example. But apart from that I didn't ever think anything of anything, they were my girls and Cole was just a little quirky funny and rather random girl.

When Cole was 13 she developed an eating disorder, Anorexia Nervosa, after a fight that I won't go into now we finally got her funding for treatment at a private eating disorders unit or edu as they are known. She saw a consultant psychologist and psychiatrist there amongst other medical professionals. One of the consultants spent a lot of time with myself and Cole and one day he asked to speak to me on my own and told me he thought that Cole had Aspergers, I hadn't ever heard of it and even said to him "whats that?" When he told me it was a form of autism I didn't believe that Cole could have it, I had no idea what it was and the only autism I knew of was from films or documentaries, I didn't know anyone with it and although I'd heard of autism, I'd never heard of Aspergers syndrome or the autistic spectrum.

I felt like the worst mother in the world, how could I now know? I'd known she had anorexia well before she was ever diagnosed, I spotted it extremely early, we were/are terribly close, why didn't I know? Cole was called into the room and the doctor explained to her what he'd told me and then asked her several questions, he then said she would be given an assessment and then it was very likely she would be given a diagnosis of Aspergers syndrome. He gave me some websites to look on when I got home, and I did and when I started to read the websites I was reading the traits and saying to Simon "Cole does almost all of these" it was scary, and I just felt so awful that I didn't know. We went back and Cole was assessed and given a diagnosis of Aspergers syndrome with dyspraxia, I'm not going to go into dyspraxia today but Aspergers does often go hand in had with other conditions such as dyspraxia, epilepsy, adhd and dyslexia. Some professionals also believe that there is a definite correlation between Aspergers and Anorexia. I spoke to the consultant and explained how bad a mother I felt and he said why did I feel bad, how could I spot a condition I had no idea about? He was right I suppose but as a mum it's natural to blame myself and it is something I still feel bad about even now almost 9 years later.

I was also asked to go home and write a list of the things Cole did that could be considered traits, I wrote 4 sides of A4 sheets of paper! I actually found the list in one of the books I have about Aspergers but unfortunately it was after we'd filmed the video that I found it. I thought it might be helpful or interesting to some of you to know some of what I wrote,  for parents who may be currently going through a similar thing or if you or someone you know is going through something similar. I won't be able to list everything I wrote as it is 4 pages long but I thought knowing some of Coles traits may be helpful to others. Please be aware though that Aspergers is not cut and dried, not everyone has all the same traits, Cole doesn't have some of the traits listed on the national autistic society website for example, everyone is different. But here are some of Coles traits.

* She takes everything literally.
* She doesn't understand jokes.
* She has no empathy for people and finds it hard to put herself in someone else's situation.
* She is very black and white.
* Cant read facial expressions.
* Hates using the telephone.
* Her wardrobes/drawers are all colour co ordinated and other things are in alphabetical order, her make up is all sorted out in order. If I moved something a tiny bit she'd know.
* When she was little if we had a delivery of say a bed or something she would scream until the people had left the house, she hated people she didn't know in the house.
* Has to have routine, every day is the same, if we are going to be doing something different we have to speak about it for a long time before hand, for example we have 2 weddings coming up and I have explained a lot what will be happening etc.
* Has no idea of an atmosphere and would just burst into a room full of upset people and be her usual smiley happy self.
* Changes the subject multiple times during a conversation.
* If I am on the phone she talks to me as normal, she doesn't understand that I'm on the phone, regardless of who it is.
* Extremely sensitive senses, her hearing, touch, smell etc is very sensitive and she can hear me talking normally from her room 3 stories up, she hates the feel of velvet it makes her feel sick.
* She has always been obsessed with hoovers, when she was little she would sit for hours with the Argos catalogue on the hoover page and as a baby called it the "hooverlogue".
* Hates being touched by strangers, if she's in a queue in a shop and someone is too close she panics.
* Talks to children as if they are the same age as her, my nephew is 2 and she talks to him like he's almost 23.
* Hates "text talk" she always texts in full English can't stand someone writing "k" or "c u tmrw" to her on a text it makes her uncomfortable because in her mind it "isn't right".
* Can't tell lies, because it is wrong.
* Doesn't like people dressed up for example Pudsey bear or Mickey Mouse we wouldn't ever be able to go to Disney on holidays!
* Cole is a visual learner, she learns much better from pictures and diagrams, when she studied for her A levels at home I used to draw her pictures and she understood much better.
* I have to explain things in scenarios so she can understand.
* Doesn't understand sayings, for example someone once said to her "this isn't going to get the baby bathed" and she replied "there isn't a baby".
* When she was younger she borrowed things without asking, she would take my umbrella if it was raining or borrow jewellery etc because it was in her house she could use it. She doesn't do this now as she has learned it isn't what we do and she needs to ask.
* When she was younger if we went to friends houses she would tidy things for hours, if they had Lego or craft things she loved to sort things into boxes, she once said she would love to work in the pharmacy so she could put all the boxes in order.
* Has a very low pain threshold and cannot cope with pain or being ill at all.
* Doesn't like people if they are drunk, as they act differently.
* If someone is very upset she hates it and wants them to be their usual self as soon as possible.
* Absolutely hates change, anything different at all, a couple we are close to split up and after a while one of them had a new partner and she wouldn't speak to them because it wasn't the same.
* Last summer Cole moved bedrooms, we had it completely gutted, new window, all new furniture etc and it was finished for almost 5 months before she would sleep in it because it was different.
* Obsesses about things.
* Going on holiday is difficult if we haven't been before to the place, we have to get there and go and find where everything is and the layout etc so she can get used to it.

So those are a few of the traits Cole has, although it is a very long list it doesn't contain everything we experience on a day to day basis. We do mention a lot of things in the video that Cole does or says and some of the funny things she has done/said too, I could write a book!

One of the things I found was once Cole had received her diagnosis we didn't get any other help or advice, and haven't to this day. I was only ever given that first original website to look on from the doctor, after diagnosis we got nothing no advice, no help, nothing. I contacted school immediately after the very first time Aspergers had been mentioned and they said to let them know should Cole be diagnosed,  I did that and they didn't know what to do about it! I told them her traits and explained what she would find difficult, she wasn't offered any extra support, nothing changed as far as the school were concerned they didn't do anything or offer any support at all. I actually contacted the national autistic society and asked for some advice regarding school and I found out that when Cole was to take any exams she was entitled to 25% extra time and a room on her own, school hadn't ever told me and to be honest I don't think they knew and even when it came to Coles GCSE exams I had to inform the school of what she was entitled to, they really were appalling. One of the things Cole struggles with is understanding "big" words and what certain words and phrases mean, we asked if in her GCSE exams she could have someone explain words and sayings to her and we were told no we couldn't it would be considered cheating. I'm pleased to say that at university she was allowed this so maybe the rules have changed? When Cole was in the lower 6th form, around 3 years after diagnosis a teacher at the school emailed Cole and said he needed to see her "asap" Cole didn't go and see him and then got into trouble, but she had no idea what asap was, this was 3 years after diagnosis, the teacher was fully aware of Coles Aspergers and knew she wouldn't understand, when I rang the school to speak to the teacher he told me he had forgotten she had it, I was furious.

To be honest university weren't much better, Cole was allowed to ask her invigilator what certain words and phrases meant but that was it, we attended several open days and I asked numerous times what help was on offer etc and told Cole's course tutor would be made aware and all her lecturers would be made aware and she would be assigned a person who she could go to, one of the specialist disability team at the uni. Yes the course leader was told but she didn't pass on any of the information, so none of Coles lecturers knew, it was a nightmare we had meeting upon meeting and nothing changed, Cole was allowed to take a dictaphone into lectures and record them and then ask me when she got home what certain words or phrases meant but that doesn't help in a lecture theatre when the lecturer is using constant cliches, sarcasm and sayings because they aren't aware they shouldn't be. Finally after I issued a formal complaint at the start of Coles final year of uni we had a meeting and the day of her final exams something was done, this was 2 weeks before she left university, it was a shambles from start to finish, the communication was appalling and it seemed nobody could do their jobs properly. We had an incident in Coles second year where she was physically assaulted by a student, Cole had to refrain from attending uni for 4 months whilst the student who attacked her carried on with their studies, the uni did nothing about the attack because in their words "he doesn't understand, he has something called Aspergers syndrome" I almost fainted, so does Cole, it was all over her files, I won't dwell on that too much as it isn't of importance, but please if you have Aspergers and are going to be attending uni or your child is, please please push them and don't give up, we were failed miserably by the education system and I would hate to see it happen to someone else.

If you do have a child with Aspergers and the school/college/uni isn't great, keep pushing, speak to the national autistic society and find out your rights and what your child is entitled to and push for it, please keep pushing don't let it go, I found school tried to fob me off a lot and used the excuse of not knowing a lot about Aspergers, obviously I am going back 9 years and would hope things have moved on a lot by now in schools, but we were badly let down by the uni too. At the time of Coles diagnosis not one of my family members or friends had heard of Aspergers, it wasn't a well known condition. But even now I find although people have heard of Aspergers they have no idea what it is or what it means for Cole to have it, I definitely think more awareness is needed, like I said, I myself had no clue what it was or meant for Cole, and neither did any of our family or friends and although it is more well known now and people have heard of Aspergers syndrome, they don't necessarily understand what it means.

Apart from a few struggles which we get through with lots of explaining and time tables etc Cole lives a full and happy life, she has friends, not lots of friends as she finds it difficult to make friends, but she has friends and she has is a self employed make up artist too, we explain in the video a bit about how she overcame struggles with that at first, but she is happy and loves her job as a make up artist, nail technician and hair stylist, she has grown in confidence and is learning to live a happy normal (whatever normal is) life.

I think that I have pretty much covered the things we forgot to mention in the video, but if you have any questions at all please feel free to leave them in the comments as I do always reply to all my comments, or if you'd rather please feel free to email me or tweet me, all my clickable social media links are in the little boxes at the top right of the page.

I have some books that I have found helpful over the years, we do speak about the books in the video and explain what each one is about but I will list them below with a link to where you can find them.

Freaks, Geeks & Aspergers Syndrome by Luke Jackson available here
Aspergers Syndrome A Guide For Parents & Professionals by Tony Attwood available here
Standing Up, Falling Down by Nita Jackson available here
An Asperger Dictionary Of Everyday Expressions by Ian Stuart-Hamilton available here

There will obviously be many more books available now that you may find helpful but these are the ones we have used over the years. Cole and I found the dictionary of everyday expressions the most helpful book out of all the ones we own, it has been very helpful for Cole and one she can take with her when she is out of the house.

The National Autistic Society are extremely helpful, you can find their website here they have a lot of information about diagnosis and how you obtain one amongst other things, they are very helpful and have advice on numerous issues, I would highly recommend them.

Thank you for reading this extremely long post, I hope it has helped.

Much love as always,

Zoe x

* I had Nichole's full permission to write this blog post.

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