Sandie Box - Me, Myself and My Aspergers
I would like to tell you a little bit about me and how having Aspergers impacts on my life, some of the challenges and perhaps show you how sometimes having Aspergers can be a benefit or a gift and how an insight into my ‘Aspie’ brain may help you and yours
It is important to remember that we are all unique and what I describe here, may be completely different to your experience of Aspergers triggers and reactions.
I have worked in the early years field for over 30 years. With an 1st class BA Honours in Early Years and Education (1st class! because if an Aspie is going to commit to something that difficult, they are going to give it their all and achieve perfection), I have carried out several roles including be the lead for learning for children 0-4 and leading on enriching programmes such as 'Every Child A Talker' programme, where I both researched and implemented.
As a mum of two boys and recently a little girl, and as an adult with Aspergers, my passion is to support others; to ensure opportunities provided for children is inclusive, enabling, and accessible for all, the foundation being to work from the child's interests to engage, facilitate language, play, develop social interactions and introduce new learning. It was my aim to see results and by results, I mean children who seemed lost, unable to express themselves, use language or join in with their peers, were able to fully participate and show their understanding and joy in a project, be it verbally or in their own style of communicating.
My focus for the most part of my career has been on providing the right environments, the best adult child interactions, the repetitive and visual aspects added to the learning 'curriculum' supporting children with additional needs and/or language and social barriers. Introducing the power of books, stories and child led play saw non-verbal children able to express themselves in ways that were comfortable to them, retelling stories, listening, and making connections
For most of my childhood I was oblivious to being 'different’ or having quirky behaviours. I lived in my bubble and did not care what others thought of me, happy for my identical twin to talk and make friends for me. I was her shadow and she my voice. Various tests were clear and other than extra lessons in reception class to help learn the letters of the alphabet, there were no other suggestions of 'difficulties'. I conformed, did not act out or draw attention to myself. Whilst some thought I was shy; I chose when I would talk and now would label this as being selective mute. Books were my get away and I even considered pretending I was reading so others would avoid talking to me. My face must be expressionless because I am always being told to smile but smiling to make others more comfortable makes me even more uneasy. I was happy in my bubble until secondary school. This is when I realised, I was 'different' and felt disconnected from everyone.
Struggling with anxiety, depression and trying to understand myself as an 11 year old made seeing light at the end of the tunnel almost impossible. I did have a lot to be thankful for; career and family, but I was struggling big time which ended in a breakdown in 2014. No more pretending that I could manage my workload, home life and oddities. I could not keep the mask on anymore or hide the despair and hopelessness in my experience, it is a myth that people with Aspergers lack emotion, it is the opposite, we feel too much, it is like we inhale and absorb everyone’s emotions, and it is overwhelming – this led to my diagnosis at 41 . A strong point I want to make here is, you know your child best. Listen to yourself and fight for it because no one else will. I was told that girls with Autism do not suffer with anxiety, and to take more antidepressants, and yet it is known as one of the main features. Social anxiety, depression is enough to stop you stepping in a doctors but add Aspergers and the need to do it over and over, the results leave scars. I did get referred eventually and diagnosed but too late and I had experienced so much pain to understand myself, my triggers, my difficulties and blindly seek my way forward in life. Early intervention is the key and why I have spent my career fighting for other children to have their needs met, their environments adapted, and their voices (verbal/non-verbal) heard.
Now I realise that autism is part of me and the way I think about, and experience the world, and I am happy about that. Maybe people should think and communicate more like us Aspies; we say what we mean, we do not add extra meaning to words, and we are literal thinkers, treating others kindly, truthfully, and fairly. We are often thought of as unemotional, not wanting or needing friends, but friendships are harder for us to make but once made we make very loyal friends. We trust and let fewer people into our circle.
I still have difficulty maintaining eye contact, it can be so uncomfortable, especially when in unfamiliar or stressful situations. Too much energy is spent trying to give the right amount and leaving me unable to focus on what is being said and how to reply.
Irritatingly, what we think we are explaining is often misunderstood by others. People seem to hear what they want to hear. I wish people would listen to the words, not add their own presumptions. It can be so frustrating my brain gets in a tangle and I lose the ability to string a sensible sentence together. This happens more when I am socially overwhelmed or feeling a strong emotion such as anger or sadness and then I notice that my ability to use expressive language or communicate to others can be impaired. That is ok in safe company but in the wrong company, can lead to mockery and brutal ‘banter’, adding to my feelings of stupidity, difference, frustrations and further impacting on my fragile self-esteem.
When I reached my 30's it became enlightening at how my senses have always been affected, a strong sensitivity to light, smells, enclosed spaces, noise, and certain materials in clothes, along with a diet of beige food.
We talk about the need for routine with children with ASD, but I see my need for routine in an OCD type of way. No clutter and mess and my surroundings to be tidy before I can take part in the day. My frustration, anger and productivity are really affected by my environment. I am very rigid in where things 'live' and everything having a place this is perhaps because there is not a lot in my life I can control.
It has taken me a long time to understand myself, the things that trigger me to mask, hibernate emotionally, unpick my emotions, know when to retreat before I feel like I have a meltdown and learn to try and express myself instead of letting it build.
The reason I have showed you a little insight into my world living with Aspergers is if I can help one other child not struggle or by giving you renewed hope that your child is going to find their way and adjust to some of the challenges as they grow, by sharing my story then it is worth it. Take a fresh look at their environments and work together to identify triggers, emotions and be their forever support. I know that children who are given love, support, understanding, and a strong sense of themselves as capable, will be able to achieve, adapt to this often-crazy world.
Sandie Box - Early Years Specialist, Bristol