Over the past few years our family have discovered we are neurodivergent. It has been a long and sometimes very difficult road to get to the point of being able to process and begin to claim our own identities. We are constantly evolving and trying to navigate ways for us all to live and balance the different sensory, communication and mental health needs we each have. Every family is unique and has their own challenges to overcome and milestones to celebrate along the way, whether they are following the predominant neurotype pathway or a neurodivergent pathway. The difference between these two main pathways in life is the understanding, acceptance and ease in which travelling down those paths takes and impacts on people regardless of everything else.
I am a qualified primary teacher and have accumulated many years of experience within education and have attended numerous SEN and Autism based training courses, however, nothing had prepared me, or even made me vaguely aware, of what the reality of being a parent to Autistic children would actually be like, let alone subsequently, slowly realising that I was also Autistic. It has been like an awakening and also a relief.
Like many other older people (late 30's / early 40s), my self-identification and then diagnosis came after my children's Autism assessment process where a series of light bulbs were slowly turned on inside my head as I began to self-identify as being Autistic too. After my own formal diagnosis came a process of unravelling confused thoughts, reassessing a lifetime of events and memories through a different, new, neurodivergent lens, then slowly beginning to understand and recognise what it means to be Autistic as an adult. I finally got to the point of understanding how validating a diagnosis can be, how being Autistic is not just a label, but a way of understanding myself and my family.
Knowing I was Autistic enabled me to understand, give meaning and start to make sense of what was previously a very confusing and often very overwhelming world and place to be. I realised that being Autistic was the reason why things are much more of a struggle and why it feels like everything around me is an extra effort. It was not me being unable to cope, it was because my neurodivergent mind and body was trying to fit into a world that felt slightly out of reach and not completely 'right' and my sensory system is trying to compete in an environment that is often not designed or set up for my neurodivergent needs.
More adults are now getting diagnosed as being Autistic later in life, there are now officially 'more Autistic' people than ever before. This is not because there is a sudden pandemic of Autistic babies being born, this is because there is now more awareness around Autism and how Autistic people are not confined to the rigid stereo type as depicted in the media and in previous research and literature. We are slowly moving towards a new understanding of Autism and Neurodivergence.
I participated in Kieran Rose's 'Inside of Autism' course earlier this year, I would highly recommend this course for anyone wanting to find out more about the history of Autism and how Autistic research is starting to head in a new direction led by Autistic Researchers and Autistic Advocates. 'Most Autism training is stereotypical, wrapped up in non-Autistic behavioural-based perspectives and incredibly deficit focused and ultimately useless. It doesn't have any meaning. The Inside of Autism course strips back those stereotypes and shifts the lens from a centred non-Autistic viewpoint to an Autistic one.' (K. Rose, The Autistic Advocate).
This course helped me to realise that the reason I was struggling and finding life so hard was that every day I was trying to make our neurodivergent family fit into a box made up of the restrictions, norms and values devised by the neuromajority, for sole benefit of the predominant neurotype (Luke Beardon 2017). Things that should have been simple and manageable that I saw so many families and friends do with ease like getting children to school, having a family meal (at home not even daring to go to a restaurant and eat out), going to the park, are all VERY difficult and need ALOT of scaffolding, preparation and support to even take place, let alone be deemed a success. Let alone when you add the complications of differing sensory needs, masking, burnout, mental health issues and OCD into that mix!
The reasons why it is such a struggle for neurodivergent families is rooted in the very history of Autism itself. Autism research has so far been based upon the completely deficit medical model of diagnosis. This is now beginning to change, and the social model is slowly becoming more accepted. The shift is moving away from blaming the Autistic person and expecting the person to change to fit in, rather, neurodiversity is valued. Luke Beardon's (2017) work summarises this perfectly by saying 'Autism + Environment = Outcome'. It is through this change, through new Autistic research led by Autistic academics and Autistic advocates, that I am starting to feel more hope. We are heading towards a new understanding; Autistic people can begin to claim a positive Autistic identity, not an identity based on trauma. I am feeling more confident that we (including my family) can move forwards to live a neurodivergent life with greater understanding and acceptance. I have recently started volunteering with Autistic Parents UK (Autistic Parents UK), which is a peer-led parental support group. I am immensely grateful for my journey with them so far in helping me begin to understand all of this, it has been quite a mind flip, but in a positive way! Volunteering with APUK is not only helping me recover from my own Autistic Burnout but helping my understanding of the Neurodivergent Movement, whilst knowing I have the security of being alongside other neurodivergent parents who understand and just 'get it'. There are so many Autistic and neurodivergent parents that have struggled more than most, especially over the past few years throughout the Covid Lockdowns, but we are all in this parenting journey together, we can all support each other to move forwards.