A Personal Story - ASD Diagnoisis
En-Fold’s founder shares some of her own personal journey to an adult diagnosis and how it has influenced her passion to make a difference.
Childhood was a place of confusion and isolation. Intense bullying and difficulty fitting in and understanding the world made life a challenging and rather miserable experience. To the onlooker, there was a slightly odd young person, but one who was achieving; after all school was for learning! Diagnosed with clinical depression by the age of 9, but no mention of why I didn’t seem to fit.
Open-ended tasks for homework would mean that literally hours would be spent producing work that would be ‘good enough’ for the perfectionist self-critic. By the time senior school came, teachers would be reminding that we were working towards our GCSEs and not writing a PhD!
Becoming involved in scouting was a great experience, and again to the untrained observer, a young person was shining and achieving. The reality was a young person obsessed with collecting the proficiency badges and working towards the highest achievement of Queen Scout Award (which was achieved). Becoming a patrol leader gave permission to organise, plan and control the activities of the group - facilitating and leading and delegating becoming a coping strategy for controlling the world that overwhelmed.
Self-esteem was wrapped up in this constant gaslighting and masking, with burn out and a full mental health breakdown leading to an extensive hospital admission at 16 years old. Sadly, deterioration in mental health is not uncommon for undiagnosed females on the autistic spectrum. Refocussing and engaging in life with the dogmatic determination to achieve, a range of volunteering activities were embarked upon.
University as an independent student was pursued, and passion for making a difference to the lives of others was sparked. The more involvement in the world of disability, the more understanding of differences was gained, alongside changes in home and family life.
Experience has been gained through different job roles within the world of disability and in the role of foster carer for children. After being approached to set up a support group by parents with children on the Asperger end of the spectrum, High Five was created. It soon became very apparent that the descriptions in that meeting were of the masked inner self.
Skipping some more time and with the arrival of children, soon, the autism diagnostic pathway was much closer to home. Having a clear understanding of the condition, and indeed personally questioning, the journey for all the females began. Here we are today as a family, with all the females diagnosed with ASC.
High Five, now over 10 years old, involvement in the Northamptonshire autistic community over the last decade and more, along with a lifetime of lived experience, has given rise to wanting to see change. There are many amazing bloggers, champions and activists for change who are doing a fantastic job of altering perception and generating awareness.
En-Fold was born from my passion and drive to be part of a change that sees individuals and families impacted by ASC getting the support and information that they need. All too often, once a diagnosis is given minimal explanation is offered, or information on what support is available. This system navigating and setting people up equipped for their life journey is En-Fold’s mission, and something I am proud to be taking forward.
My diagnosis has given me an explanation of who I am and why I am the way I am. It is not an excuse, but it gives me a reason for the things I find so difficult, and therefore permission not to beat myself up (so much). Many people will look at me, and see a confident, intelligent and organised individual – certainly in the ‘you don’t look autistic’ group, Grrrr. Only those who know me well will see the critical self-reflecting perfectionist.
Within my ‘professional’ mode, I am articulate and capable, and yet the challenge and anxiety experienced around the unfamiliar, unstructured or emotive can be debilitating. Every activity, is planned and simple changes are hard to deal with. Do I view my autism as a disability – Yes I do! Do I think it makes me less a person – NO! There are some things I can do as well as anyone else, there are other things I need to go about differently or use some support with.
Dare I say it, there are even some things I may be better than other at… I am an individual, and I have autism. I consider myself fortunate that my ‘special interest’ is autism. Through En-Fold, I am able to use my knowledge and passion to support other people.