So it was a strange concept for me personally the diagnosis process – I went for the diagnosis as I had been struggling for a number of years with mental health and generally being me – I felt that I was struggling to connect with my daughter too and I couldn’t understand why – my son is Autistic (Asperger’s) and I always understood how he felt so I thought it was either her or me and had to explore this further. My appointment came through quicker and I was diagnosed with Asperger’s, my daughter was not diagnosed. It’s been almost two years now since my own diagnosis and I still feel overwhelmed by it at times: it just all makes sense to me like a huge weight off my shoulders but then at the same time I am so frustrated by it, it weighs me down. It’s like being trapped in my own mind where I can see the words and acts travelling in front of me and I can’t seem to get it right. Life at times Is far too bright, too loud, too cramped, too detailed, too crowded, too vivid, too intense and just sometimes just far too much. But overall It was a huge relief I literally thought I was going mad. I had struggled all my life to fit in and be just me – so to understand why helped me immensely – I still have a long way to go but I feel I can start to find the real me.
I think having a son on the Spectrum has helped me more in terms of Autism acceptance and finding your way in the world. He has just turned 14 and I feel if I had, had the support in terms of family like he has then my life would have been mapped out very differently. I feel that the world will never quite get Autism though, people only see it in one light and only what they want to see – people don’t understand the struggle behind it all – they don’t see tears and tantrums because you try so hard to fit in. I feel like I have to justify myself all the time so my opinion of Autism hasn’t changed as I have always in some form or another lived with it either with my son, in my work or in myself. I feel I understand more than most what it is really like from many different angles.
I suffer from, I have, I live with, I am…how do you describe your Autism? It depends on what day, how I feel, and who asks or who I choose to tell. I am trying to be upfront and honest to get it out in the open to stop people thinking I am odd by informing them from the get go, It tells them straight from the start I have a condition, disability, my whatever and this is it, this is me I may act oddly but it’s my condition, my illness, my disease, my disability, my me! However you want to describe it. It’s odd the way people describe it, I just say I am Autistic and look for their reaction, sometimes they give it away in their smile or their eyes, I can see pity, disbelief and acceptance in the way you turn up your upper lip or the look in your eye. I may find reading social cues difficult but sometimes your emotion shows in the crease of your mouth or the look on your eyes. I learnt this from my job: I look at your mouth when you talk to me because it gives me a clue in your feelings and then that tells me how to react…
Autism to me is a way of life – it is the way I read the world and it is so different to everybody else. My anxiety can be too much at times and I struggle with it daily but I put on a front and I am able to mask most of my traits but that is so exhausting. But on the positive side it is me – it’s my attention to detail, my creative flair, my specific interests and a unique, sometime refreshing way to view things, the world is an exciting and very scary place and my Autism magnifies this to the extreme and that can be amazing at times and that is my autism it has amazing qualities and then the most extreme difficulties that unless you live with it you can’t really begin to fully understand.
In the UK we still have a long way to go to be fully inclusive and supportive we are getting there slowly. We have special schools that are mainly private so you have to pay for the education your child deserves, which is out of reach for families like mine, or it is down to where you live – if your child hasn’t got a statement or an EHCP then you don’t get the support or the chance to pick a special school you end up in a mainstream school with large class sizes and pretty uneducated about Autism and how to get the full potential out of the students with it. It is a minefield at times especially with high functioning autism or Asperger’s you just get lost in the system and forgotten about to be honest, it is frustrating. But then there are the families of support the special groups set up for families because there is nothing out there – I set up two voluntarily because there was nothing in our area and this has helped families like mine to feel part of something. In the work place it is pretty much the same – the government needs to step up and invest in Autism and change its view and accept this hidden disability to help educators and work places support, and fully embrace autism because it can offer so much in society and we at times get overlooked.
I love board games, escape rooms and puzzles – I try to create a balance of work and play but it is difficult at times.
Living with someone not on the Spectrum is as difficult as living with someone on the Spectrum. In our household we are split in two: my son and I are Autistic and my daughter and husband are neurotypical. I find it difficult to parent and be a wife some days and especially to a neurotypical daughter and husband – I can’t emotionally empathise with them and I get just as frustrated as they do with me for sure. I have a mind blindness and if I don’t feel it or see it then I don’t get it, but then on the flip side if I feel it and see it why don’t they?! I get so emotional I cry and release all my emotions at once and get caught up in moments that my husband and daughter don’t quite get and to be honest sometimes I don’t get it either. I wear my heart on my sleeve and can’t hide behind my emotions. I need routines and structure I like to plan and organise things and it’s difficult to have an element of surprise and I know this can drive Tilly and Dan mad to say the least. Finn is also so much like me so it is like in full stereo for Dan and Tilly. I get frustrated with myself sometimes I can see what’s happening and unravelling right in front of my eyes, but I can’t seem to change it or stop it, I feel like it’s out of my control and that upsets me!! I also feel I sabotage myself and miss out on things because I find it hard, I really don’t mean to but it is so difficult for me to fit in and absorb the world. I plan so much that the enjoyment is taken away from it as the only thing I can’t control is other people and that to me is like trying to train a wild horse in the snow! This is the same with the rest of my family as well as my work colleagues and friends it can be a tough rollercoaster for us all but on the whole, they are there to support and on the positive side they are my everything and I couldn’t live without them all.
I can work with my Autism…
One of my job roles is as an Autism specialism teaching assistant at a boarding school for deaf children. It is difficult not to put a personal element into my work due to my Autism, that doesn’t make me an expert in Autism in my field, but I live with it daily and I feel I have a deeper understanding and it helps put it into a different perspective in my work. My other role is as an activities coordinator and I also run a youth club and have been doing this for 16 years, it’s my baby! I also voluntarily run a club called Happy Days for children and young people on the Spectrum too, I set it up so I could be a part of a child and parent group but without the awkwardness as I run it and control how it goes so it works. I am learning everyday more about strategies and coping mechanisms, I am not perfect, far from it but I do understand, and that is half the battle. All my life all I have ever wanted was someone to understand me. It is also not about changing the person with Autism but it’s about teaching the young person to be comfortable with the behaviours and how to cope with them. Autism is not a failure or a tragedy, with the right support Autistic people can go to school, work, live in the community, have friends, get married and have families. I have all of this so I can too! I don’t lack empathy, in fact sometimes I have too much empathy and too many emotions, I can feel far more than most people to the point I feel I could shatter! I find it difficult to regulate emotions, so I will have good moments shadowed by low points. I don’t suffer from my Autism, to be honest I suffer when I don’t get the support or understanding I need, or when other people think they can make decisions about my life without involving them. The lack of understanding makes me as an Autistic person suffer.
Support, understanding and interventions are the key to help. Part of my role is to help the young people and their parents, teachers and support staff with Autism to maybe one day make that difference.
I feel that one day or one week shouldn’t be acceptance of Autism, it shouldn’t take that to make people understand and realise how I feel I can feel it see it every day why can’t they?
Because they don’t live my life and the over sensitivity of what life is.
It is hard to try and make people understand as it is a difficult task when some days I don’t understand myself, let alone trying to make the world understand Autism!
I feel too much, I see too much I am too much.
I get tired, over tired so that I can’t sleep, I can’t switch off, I do too much because I don’t know when to stop, I have to keep going so I don’t stop. It’s just madness, it doesn’t make sense. People often say to me I don’t know how you do it all but to be honest if I didn’t I would break. I feel that if I don’t plan things I don’t get things done and if I’m not planning and doing I crack. But I also need to stop and hibernate I struggle with too much interaction I need my own company and my own time to think and readdress life, but sometimes I need help with that I need people to stay to me just stop take time and just be. Just be you, you’re OK.
I’m worried I will crack if I keep going like this but worried I will crack if I don’t! I need someone to say stop sometimes. I feel on the edge or at the brink of just cracking completely.
It’s like I need the world to stop so I can take a step off, breathe and then get back on. I need that breathing space to function.
But I also feel if I stop I might never start again and that worries me. I feel fragile that someday a I might shatter.
But my Autism makes me determined and that drive to get things done and I try harder than I should to fit in, to be accepted, to be liked to be just me, but sometimes it is at a cost to myself.
But would I take it away? No, as it is me and I am it whether I like it or not.
I just have to embrace it, learn my strategies and coping blocks to get through each day and you know what, some days my Autism makes me awesome!
I need to remind myself of that so that I can be, be just me and embrace it and all that comes with it! I need people to let me be me and accept that we are all different and that is what makes the world at times a truly amazing place.
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