That ‘light-bulb’ moment…

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I first heard the word ‘Autism’ whilst I was studying for my 3-year teaching degree. Autism was referred to during my lectures on SEN and the SEN Code of Practice 2001 (as it was then known as back in 2001.)

I then completed a few courses run by the county council such as ‘Autism in the Early Years.’ I worked in a school in Norwich where there were a few pupils with ASD, just referred to as ‘Autism’ back in 2004. I must admit my initial thoughts about Autism were limited to people who find eye-contact difficult and those that seem to be ‘in their own world.’ How wrong I was, I had no idea that the ‘Spectrum’ was so wide and varied, util i started researching Sensory Processing Disorder (SPD) and Autistic Spectrum Disorders (ASD) in terms of gaining information about my own child and starting my blog in March 2016.

Some questions were raised myself, after watching a documentary on ‘Girls with Autism’ http://www.itv.com/presscentre/press-releases/girls-autism a documentary shown on ITV in July 2015, based at Limpsfield Grange in Surrey. Which is the only state run boarding school in Britain specialising in girls with Autism. During this documentary it was highlighted that in some teenage girls, diagnoses such as Anorexia, Depression and particularly Bi Polar, have been given and not Autism. This hit home for me, remembering the time that my mum took me to my GP and said “please help, my daughter won’t eat,” after I only ate minimal food such as cucumber and gagged on the majority of my food, at the age of 14. I have often been told that I am anxious and/or depressed, In 2009 a doctor in Norwich labelled me as ‘Bi Polar,’ but I’ve always had serious doubts that this is the case.

It wasn’t until I attended a talk led by ‘Autism West Midlands’ in September 2016, that I had a ‘light-bulb’ moment. As we discussed various traits and issues experienced by other parents I sat there thinking, that sounds just like me! When discussing that some children simply cannot tell when they are full and have no idea when they are full, I thought “that’s me.” This also applied when talking about masking at school and building up sensory overloads all day at school, and then finally releasing like a volcano erupting once reaching home. I was a huge conformist as a child and a teenager, I can remember only ever having 2 detentions in my whole school life! I am, and was scared of authority, I used to get upset if other children were shouted at in class.

After the Autism talk I decided to look into the pro’s and con’s of going to ask my GP about the possibility of an adult assessment for ASD, in particular Asperger’s Syndrome, but I’m currently unsure if this can still be referred to?

I realised that I had taught myself how to deal with a lot of my traits as I’d grown into adulthood and that I am functioning fairly ‘OK’ these days, so I wasn’t looking for any sort of support in terms of strategies, although I’m always open to suggestions! Some of the things I have taught myself over time are:

  • Understanding jokes and sense of humour – although I still don’t always get some jokes!
  • How to gain and keep eye contact – this didn’t happen until I was around 18 and got my first job in customer service.
  • How to understand non-verbal cues in conversations, e.g. winks, yawns (if someone is bored!) etc.
  • How to hold a conversation that isn’t entirely one-sided! Sometimes I literally have verbal diarrhea – If I’m talking about something that I enjoy, or that I’m passionate about I forget to allow the person I’m talking to to respond or have their own say, so I’m now more aware of how conversations should go!
  • To know that not everyone has to be ‘my friend.’ I spent a great number of years trying to please everyone, I have been known to change my point of view to one that I know that the other person would agree with, if only to diffuse a situation and to avoid a disagreement or argument as I really am uncomfortable with any sort of confrontation. As a result I have often been ‘walked all over’ and have been a easy target to manipulate. It is only in the past year that I have said to myself ‘enough is enough’ and have stood up several times for what I truly believe in. I think becoming a mother has played a huge part in this!
  • Relationships ! This has always been a sore subject! Well until now! I’ve always struggled to find people that actually ‘get me.’ I was often called weird and it was difficult for past partners to live with my ‘quirks!’ I think this explains why I have struggled to commit long term in the past and also struggled to trust. Once I found someone who understands me it was very different, very difficult to live with at times, but I am not as impulsive as I was in my 20’s!
  • Saying things I don’t mean and speaking without thinking first, I don’t have a filter for the majority of time! If a though pops into my head it literally comes straight out! This results in me often wallowing for hours after a conversation wondering about why I said what I did and if the other person in the conversation was offended by what I said! Saying the wrong thing and people looking at me when I talk are the reasons that I didn’t talk very much as a child at school, I was labelled throughout my school life as ‘painfully shy.’ In fact, I knew most of the answers to questions in class I was just desperate not to be noticed or attention drawn to me, I like to fade into the background and would have loved an ‘Invisibility Cloak!’

Knowing that I am functioning in terms of running a household and caring for 2 young children, I had to think about the possible advantages of an adult ASD assessment:

  • I would hopefully be given answers to questions that I’ve had about myself my whole life, to confirm or dismiss any previous diagnoses.
  • Not a great deal would change, I would still have my home, my 2 children and partner of 6 years. I have also been able to hold down a job since I was 16 and I’ve worked in Childcare and Education for 13 years with only having around 6 week’s off work sick. I would also hope that my friends would understand me and that I haven’t changed, friends are precious to me as I find it so difficult to make and keep them!
  • I would hope that it may support future job roles, as I do hope to eventually work with children with additional needs, especially those with ASD, and Sensory Processing Difficulties as I can put myself in their place, I kind of know how they may be feeling, and If they are getting upset about something, it can be something as simple as a label in their clothes that has been making them feel uncomfortable all day.

I also had my doubts:

  • Would people treat me any differently? Think of me as only trying to gain money from a diagnosis, when it’s the same for my daughter, we don’t qualify and it is not the reason behind it – the reason is helping to accept myself and move on.
  • Would it affect my career? I’m worried that some may think that a diagnosis would effect my ability to do my job, but as stated above I have been doing it for 13 years, my paperwork is meticulous and I could never do any other job as it’s all I’ve ever known!

As I have dispelled my own doubts, I went to my GP after scoring myself with an online Asperger’s test where I scored 48 out of 50. I sent this test prior to my GP appointment and from there I was referred straight on for an adult ASD assessment. This was in October 2016 and I’m fully aware that this is going to be a long process and I’m prepared for the wait. I have spent many appointments with my daughter where I have explained in great detail how she feels, and have been often questioned:

“How do you know how she feels?” 

My reply has always been:

“Because I feel the same.” 

This is especially prominent in terms of sensory sensitivities such as itchy jumpers and labels in clothes!

What I hope to say in future appointment is:

“Because I am an adult who has ASD.” 

I have taken a while to write this post, I felt ashamed at first, I wrote a poem and had it shared anonymously, very kindly by Kelly at ‘Its a Tink Thing.‘ Here is the poem I wrote;

http://itsatinkthing.com/special-needs/a-cry-for-help/

Only this Monday I read the following article, published by the Guardian:

www.theguardian.com/autism-hidden-pool-of-undiagnosed-mothers

The following quote hit home for me:

“Their own autism, often undiagnosed, means they put professionals’ backs up and can be accused of causing or fabricating their children’s condition,” said Gould.

Source: theguardian.com 26/12/16.

I’m literally had no idea about my traits until I started looking into Sensory Processing Disorder, and I was invited to the talk on Autism by our previous Family Support Worker, this article states that there are other people who have the same experiences. I am currently in limbo as to whether I continue the fight for Lou or give up as I often left to feel like I am ‘making it all up,’ ‘fabricating’ or ‘exaggerating.’ My parenting has been blamed many a time for the behaviours that our daughter displays at home, I’m often left to ask people around me if they believe me, my poor mother has been asked this so may times, but as I have dedicated 12 months to building my Blog, Facebook and Twitter to my daughter’s story how could I simply be making this up?

For now, I’m taking each day at a time and seeing where it takes us.

One thing is for sure, I’ve learnt that I am who I am and I cannot change who i am and that I should be accepting of myself and proud of what I have and what I have achieved in my 34 years on this planet! 

I would be completely lost without online support groups, there are support groups for people who are experiencing the same and it helps so much to talk to people that completely ‘get’ what I am saying. I have to also thank Autism West Midlands and The National Autistic Society for their wonderful websites, which have given me so much support and information.

 

If anyone is interested below is a link to my notes that I hope to take to my initial ASD assessment appointment. I welcome any feedback in terms of other adults who already have an ASD diagnosis to see what they think about my traits.

notes-for-assessment-for-blog

 

Thanks for reading, and hopefully understanding! 🙂

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Hooked on Labels - responses & other relevant posts linky

2 thoughts on “That ‘light-bulb’ moment…

  1. Knowing you are not alone in having these traits and feelings can really help not only you, but your daughter too, and others who read your blog. As Mum to a girl with autism, I appreciate others talking and writing about it, so my daughter can grow up hopefully feeling that she doesn’t need to hide her true self. Every individual is amazing and we should embrace all! Good luck with the appointments.

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    • Thanks so much for your comment Steph 🙂 I would be utterly lost without the support of fellow SEND bloggers and SEND support groups online. I only wish I’d had the courage to speak out about it sooner but I hope to do everything in my power to support my own daughter 🙂

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