I am Autistic
My name is Jenn and I am autistic. It could however just be that my name is autistic and I am Jenn. You see both these concepts are interchangeable in my head; existing the same space. They join my other identities as a mum, a fashion designer, a digital marketing professional, a business owner and mental health academic and also a pansexual genderqueer person. As you can probably gather I also don’t fit the stereotype that history and the media have consigned us [autistics] to, which is a curse and a blessing in equal measures. A lot of people neurotypical people might struggle to understand so I am going to try and explain my perspective on this thing which is me, whilst acknowledging that every autistic person is different and that I cannot speak for all of us.
What I do know is that if everyone could conceive a basic understanding of autism, the strengths and challenges, that loosely unite us, life could be very different, and much better for autistic people everywhere.
The presentation of female autism is poorly understood and as a result many of us fly under-the-radar. I didn’t receive a diagnosis until age 33. I had always known there was something different since I was in my twenties, mainly because I had experienced the same negative outcomes in many different areas of my life, with many different people. In family, education, work and intimate relationships I kept hearing the same words: selfish, difficult, arrogant, fussy and rude. I needed to understand why this was and began a journey that is still ongoing and at this current moment has led me to write about where I have come from.
Much of the time I have had to forge a path, as none existed. It has included, amongst other things, successfully challenging a diagnosis of Emotionally Unstable Personality Disorder, understanding my brain chemistry and creating a regimen of food supplements as an alternative to psychiatric medication which is too strong for me, finding ways of accessing Occupational Therapy treatment that I was told was not available via a Personal Health Budget and researching specialist consultants to find the right treatment for my menstrual cycle, which makes me suicidal. These are the headlines but the really important things are being able to finally feel confident as a parent to my son, regaining my status as a partner in my relationship and being able to help others on the spectrum who are struggling with things I have overcome. This process to date has taken fourteen years, and the last five have been particularly hard. I have been a psychiatric inpatient five times with many more crises, but I have coped and it has afforded me unique opportunities to contribute my lived experience in the work of NHS England working across personalisation of care and support for long term conditions and mental health and also now in autism and neurodivergency.
This work is hard though. Not only am I sharing deeply personal experiences, existing in a neurotypical world is inherently fraught with difficulty. The daily bombardment of sensory overload I cope with because I cannot filter out the background like most people, means that I burn up huge amounts of energy just coping with this. By contrast, I have excellent social skills, make eye contact and am highly socialable. When I do, however, make a mistake that is attributable to being on the spectrum people don’t get that. Over time the negative narrative is internalised, whilst at the same time you learn to mask as much as you can.
In this way, autism becomes an invisible state. Invisible to those around you, because you don’t fit the stereotype and are as such unrecognisable. More fundamentally though you become invisible yourself, always rejecting the qualities that are autistic because they are so negative and pretending so hard that the lie becomes your reality. You lose touch with your essential self.
Expanding our understanding of what human means benefits everyone, whether on or off the spectrum. Appreciating this diversity and vastly different experiences of autism will allow the talents and needs of us to be integrated into society. We could go to work, access health services, have families and enjoy many other things that are often taken for granted.
Can you imagine having to leave a doctor’s surgery where you have taken your sick child because you are unable to cope with the lights and television blaring in the corner? Or trying to explain this to the receptionist who thinks I am just being rude and pushy? I can, because it has happened to me more than once.
Adjustments in our places of work and spaces of community and care can make up part of the difference to close the gap and but the adjustment that will make the most difference, on both sides, is the one we can make in our understanding and consideration toward each other.
The first generation of children diagnosed with autism in the nineties are reaching adulthood and they are being joined by increasing numbers of older adults, like me, receiving diagnoses. We are not interested in the genetic risk factors, or being cured. We want to live well and contribute. Only understanding can achieve this., Our authentic voice needs to be heard to challenge the prejudice and stigma, and truly conceive of ourselves as autistic individuals and a community together, and only more like me stepping forward to speak out can make that happen