Following diagnosis
“Expect periods of euphoria, relief, denial, resentment, fear, loneliness. There will be periods of low self-esteem and periods of hyperactivity in the light of what you now know, but always try to keep an eye on the goal of positive acceptance.”
Whether we self-identify or have a formal diagnosis of Autism, this new knowledge can unleash a whole gamut of feelings from euphoria as we finally recognise ourselves, through to denial, resentment, and anger as we struggle to reconcile our past life, relationships, and experiences with what we now know.
Anything we can do to make this period of upheaval more manageable is vital to our wellbeing and self-esteem going forward.
Sadly, timely support is woefully lacking for many people. Whether we come to this realisation as a teenager or adult, accessing appropriate support can be significantly delayed or come at great cost, just at a time when we need support the most. In some instances identification in childhood is better supported, but all too often this experience has been long and drawn out too and the cost to the individual and family can be high in the meantime.
I believe there are a few fundamental concepts, which if understood sooner rather than later can make a great deal of difference to our lives post identification. Simply knowing about them, and crucially those who care for us knowing about them too, can radically change our life. From this grew The Undercover Autistic: Navigating Your Diagnosis. Available on Amazon and other sites.
Advocacy
The biomedical model of Autism – the starting point for assessment and support in many cases – is deficit led. When we are assessed, it is in terms of what we cannot do, and when needs are identified it can sometimes be more about making life easier for others than for us.
Increasingly Autistic skills and strengths are being recognised, and we have far more legal rights than ever before, but society and the infrastructure it defines still starts from a point of deficit.
As a counterbalance to this, the concept of Neurodiversity celebrates the incredible variation in our species. It assumes variation is ‘normal’, and specifically that there are many advantages and strengths, as well as challenges, which come with being Neurodivergent.
This idea is gaining ground, but there is a long way to go. I believe a core part of my job is to advocate for difference and raise awareness of this alternate, positive perspective.