Living with Autism
If I was to say to someone that I had dyslexia, they would most likely know roughly what I was talking about. But, I also have dyspraxia and there is nowhere near as much awareness of dyspraxia as there is of dyslexia. In the past, I have often been given blank looks, treated differently because of my diagnosis or simply asked “What is dyspraxia?”
Imagine you're a healthy-educated adult, but you struggle to pour a drink without spilling it, give directions or how to navigate relationships. This is a typical picture of someone with dyspraxia. Dyspraxia, or developmental coordination disorder (DCD), affects coordination, spatial awareness and sensory perception. It's part of an umbrella of neurodiversity, which can affect my ability to carry out everyday tasks.
In 2019, with the support of my family and Scout group I walked 3 hills across Shropshire in 12 hrs and raised £546 for the Dyspraxia Foundation (DF), an organisation that has had a profound impact on my life. Following this event, I held a charity stall at our annual Scout fundraiser and raised a further £232 for DF.
Dyspraxia affects between 2% and 6% of the population, meaning there's likely to be at least one person with this condition in every school class or workplace. It can also be inherited. It is important to note that no two dyspraxics are the same, as there are so many variations. You may be able to disguise it as a mere quirk but for many, it is such a challenge.
Managing your dyspraxia is an emotional struggle too. I was diagnosed at age 6, and accepting my diagnosis took me a few years. I struggled at school for many years and found the intensity of secondary school demanding; however, with the support of friends and parents, I was able to be somewhat successful in academic terms but the stress I put myself through, to prove that my dyspraxia didn't define me took its toll on my mental and physical health. I was left burned out as a consequence of exams and drained from socialising with people in my classes. This still affects me, but I feel I am better at being kinder to myself.
There are so many positives to being dyspraxic though, as it makes you unique, and you belong to a community. Most dyspraxics are compassionate, creative and able to look at things from a holistic perspective. This blog has been a valuable creative outlet for me as is my passion for LEGO which allows me to create my own version of the world.
My sister Sophie was misdiagnosed with dyspraxia, and a few weeks ago she was diagnosed with autism. In a bid to raise awareness, I asked Sophie some questions about her recent diagnosis.
How did being diagnosed affect you?
Being diagnosed affected me both positively and negatively. I’m still working my way through thoughts around the fact that my diagnosis has taken till my 30’s because of a lack of understanding of autistic traits in women from most health professionals. It’s frustrating because you start to question how your life might have been improved if you’d had the support in place as a younger person. However, my diagnosis has been a largely positive experience as it’s provided me with answers to questions about myself, and I’m starting to learn how to undo the years of damage living in an atypical world has caused me. I feel like my diagnosis permits me to be my authentic self. There’s a lot more pressure on women to fit societal norms, so we end up having no choice but to cover our traits because we won’t survive otherwise the diagnostic criteria is also STILL the same one used in the 40s and in the 40s, they didn’t believe girls could have autism so there’s a lot of work for them to do still. The rate of dyspraxia occurring alongside autism is super high, so that still stands for me which makes even more sense as to why school was so hard.
What was the process of getting diagnosed?
The process of diagnosis for me started with therapists recognizing some of my autistic traits. I’ve battled mental health challenges since my early teens and there were a lot of misdiagnoses around that but, when I started with two therapists in my late 20s, they questioned if I was perhaps autistic. I wasn’t initially convinced by that suggestion, as my ignorance around autism had given me a narrow view of what an autistic person was. I didn’t feel like I was the image of autism I had wrongly created in my head. I’ve worked in social care for years, but it was only when I started working for an autism charity and began to meet a broad spectrum of autistic people that I began to realise that my therapist's suspicions were probably correct. I was lucky enough to be able to save and afford a private assessment because the current NHS waiting time for assessment is 2 years. I recognize how lucky I am to be in that position, and I felt it was worth the financial sacrifice because of how much difficulty I’ve experienced before realizing I was likely autistic. I had to meet with several professionals including a physiatrist who supported me through several questionnaires including needing lots of detail about my childhood experiences and the challenges I face today. It was throughout 4 meetings that it was established I am autistic and although the process was lengthy, it was worthwhile.
How does autism affect your everyday life?
I heard someone describe living as an autistic person as like being a huge exposed nerve in that we're sensitive to every minor change around us. For me, that’s a fair description. Day to day, I find it difficult to socialize with people I don’t know as I’m constantly trying to work out what’s the right and wrong thing to say, I find it difficult to recognize what emotions I’m feeling so, I can react to a lot of situations with anger, largely out frustration at myself for not understanding how I feel or how to articulate the emotion. Changing environments is tricky, so even coming home from work can overwhelm me. I have a lot of weird and wonderful coping mechanisms after 31 years of living as an autistic person but, day to day, life can be tricky as I feel like I’m navigating life without the handbook that others around me seem to have!
How did you suspect you were autistic?
Honestly, I didn’t suspect I had autism until I met other autistic women. My idea of autism was rooted in the media portrayal of autistic people and my own experience of working with autistic men. When I began to work with autistic women, I felt like I recognized so much of myself in them and from there, my research began to confirm my suspicions!
What does it mean to be neurodiverse?
It means we’re awesome! I truly do believe we’re brilliant. We see the world through a different lens to neurological people, and I think that’s vital to improve society and the wider world. Combining the different ways that every single human brain works are the best way for the world to be a better place and I feel that if every neurotypical person, could embrace neurodiverse people in the way that we embrace them, magic could happen
What was your experience of school?
School was awful. I have a very “spiky profile'' which means I’m great at some things and terrible at others, there’s no middle ground. So, I excelled in some subjects such as music and English but struggled terribly in maths and science. Despite popular belief, not all autistic people are mathematically gifted! I was also very quiet in most classes which meant my struggles were never noticed and as a result, I failed most of my GCSE’s. That failure held me back at points in my adult life, and that’s one of the reasons I wish teachers were perhaps given better access to educating themselves on the more subtle signs of autistic children. Additionally, I struggled to keep friends. I didn’t get the rules of friendship and I didn’t always understand the right and wrong way to interact with others, which made it hard to maintain relationships. I don’t blame anyone for that because it’s hard being a teenager as it is, let alone an unknowingly autistic one, and I do not doubt that others around me were autistic too and probably didn’t realize!
