This week’s blog is a personal account from an autistic person’s view. Laura, an employee of Aspire, shares some of her journey about her diagnosis, the challenges, and barriers she has faced and the dreams and aspirations she has for the future. I would personally like to thank Laura for sharing this with me and others. Laura is a huge advocate for neurodiversity and that individuals with autism have unique ways in thinking, perceiving and behaving. She embraces her autism as a different way of experiencing the world and aims to increase acceptance, understanding and inclusion of all people, regardless of their neurological differences.
Laura, when did you received your diagnosis?
“I was 34 years old, and it was just after covid in November 2020. Covid had a big impact on my mental health which partly led to me receiving my diagnosis.”
What was life like before your diagnosis?
“I struggled a lot! And still do at times with my mental meltdowns but I now can recognise when my mood is lowering. Those close to me also recognise my triggers and warning signs. At times, I tell myself somethings not right but try to ‘mask’ it and convince myself things are ok. Masking has a huge impact on my mental health and wellbeing. Usually, if my physical state and my weight stays stable then I’m fine.”
“Academically, I was a high achiever. I was always top of my class with the highest grades but had been bullied from an early age starting in primary school. The older I got the more socially isolated I became, particularly in secondary school. I was often ridiculed and eventually lost what social friends I had. The only thing that kept me going was my schoolwork. I also almost lost my mum during this time which I struggled to come to terms with especially at the time and continued to affect me into adulthood. At times I felt even more isolated than I may have appeared to be.”
“ I feel lucky that when I was growing up social media wasn’t like it is now. I feel if there had I wouldn’t be here now, living. I don’t think I would have been strong enough to cope with it and what might have been said and it doesn’t bear thinking about what could have happened.”
Did a diagnosis make a difference?
“Getting a diagnosis was a relief. To know and understand why I was different from others, particularly my sister. My sister has always been protective of me, even though she is just over a year younger. She would often be my ‘mouthpiece’ advocating and speaking on my behalf. It was more an instinctive thing rather than her realising I had difficulties. She would often take me out of situations where I was out of my depth, but I didn’t know why I felt out of my depth.”
“Recognising things like my triggers, knowing what things are bad for me, knowing when I’m running myself into the ground and ‘burning the candle at both ends’ has helped. I can sometimes put myself under too much pressure and be hard on myself. For example, if I don’t get what I set out to achieve I feel disappointed in myself. I then have a guilt trip thinking I’ve let myself down. I’m starting to recognise that not everything/everyone is perfect and that you don’t always get it 100% all the time. I’m recognising that we all aren’t perfect all of the time, but it’s a learning curve.”
“I have ‘high functioning autism’ and due to my diagnosis, I am now in control of my diagnosis rather than the other way round because I know what it is. I have a better understanding of what is happening to me and therefore my meltdowns are less dramatic.”
“As well as feeling relief, at the same time it was a worry as I didn’t know how others would react to my diagnosis.”
“Other family members are now going through the process for ADHD (attention deficit hyperactivity disorder) assessment.”
What do you think when someone says, ‘ I’m a little bit autistic?’
“ You’re either autistic or not. There’s no in-between. I think it depends on who’s saying it. It can often be said as a flippant comment but when someone understands it’s a neurological condition and the challenges people face then they become more tactful and mindful. I still think there’s a lack of understanding with autism and OCD (obsessive compulsive disorder).”
As an employee, what challenges and successes have you had?
“Ive always worked, even when I was at college and uni. I’ve worked at a bingo hall; I’ve taught French and German at secondary school-I was out of my depth in this role and recognised this wasn’t the career path for me. I went into customer services for 10 years. My last place was at Sky, and this led to me working in the Master Control Room there in London. This was at the time when covid hit. The news was constantly on talking about covid, I couldn’t get away from it. I was also living away from my natural support network (family), and this led to the decline in my mental health and wellbeing.”
“After my diagnosis I returned to work but felt barriers were put in place which impacted on my productivity in the workplace. I don’t think they felt having someone with autism was the right image, but that’s only my view.”
“ I returned home in February 2022 and my Aspire journey began. Aspire saved my life!!!! I started temporarily to cover as an Administration Officer in one of the day centres and then in July of the same year I begin work again as Administration Officer in the respite unit combined with work in another day centre setting as a secondment. I was home, I was feeling confident, and I had a job that I could get my head around and be successful at it. In October 2022 I was given the opportunity of a permanent position, which I accepted, and I haven’t looked back. During this time, I also met my fiancé-he’s the most wonderful person ever and he’ balances’ me”.
How has Aspire supported you in your role?
“In general, I have a quiet personality, but I have become more sociable and approachable. I have learnt to cope a lot better with myself and how to approach things. Sometimes I may go the long way round to explain things but people around me accept this. In the end we all get where we need to be. I don’t really need to make too many adjustments; I get a lot of reassurance from my colleagues and support when its needed. I need time to finish something/a task before moving onto the next. One thing I find useful is breaking a task down to make sure I get it done.”
“I feel that a lot of my colleagues have a good understanding of autism. Aspire support individuals in a personal way and colleagues with autism should be treated the same. I have been treated in a person-centred way and as an individual. This is really important as no two people with autism are the same and have different needs.”
What does the future hold for you.? What are your dreams and aspirations?
“Work wise, I’d like to continue as I am. I am now a representative for the staff partnership forum. Although I wasn’t successful in achieving the staff partnership director it was lovely to be recognised and that people took their time to support me in my ambitions.”
“Personally, I have moved into our own home(my fiancé and I), I have got engaged and set a date for our wedding in 2025. After that who knows……….
What advice would you give to others if they think they were autistic?
“That its not a bad thing to be different from what is ‘seen’ as the social norm of how or what a person should do/act/think. We all have challenges and the world we live in is adapting to how the neurodiverse are living in a neurological world.”
Foot note
Cyberbullying is now common due to a wide use of technology. By law, all state schools must have a behaviour policy in place that sets out the measures they will take to tackle bullying.
Children with autism face a significant risk of being bullied. According to research, approximately 63% of children with autism, aged 6-15, have experienced bullying at some point in their lives. This alarming statistic highlights the importance of addressing bullying and promoting a safe and inclusive environment for all children, regardless of their neurodiversity. Increasing understanding and acceptance of autism within schools and the wider society will help to tackle the targeting of autistic young people.
Although autism is not a mental health condition, around 70-80% of children (Simonoff, E. et al 2008) and autistic adults (Lever, A.G., Geurts, H.M., 2016) have experienced mental health problems.
Research shows that autistic people will experience higher rates of mental health issues and as many as seven out of ten autistic people will have at least one mental health condition such as anxiety and depression, and this includes children as well as adults.
Reasonable adjustments are a legal requirement under the Equality Act 2010 to make sure health and social care services are accessible to all disabled people. This includes autistic people.
