I was diagnosed with Autism in 2010 at the age of 24 years old that same year I started a new career venture as a public speaker and later a trainer and consultant. After the diagnosis as my parents and I were walking towards car my Mum gently directed and reaffirmed to me that I was person first and both she and my Dad had always seen me (and would continue to do so) as “Paul”.
Culture Shock – Part 1
In my own naivety I was unaware that autism had a pre-existing “culture” that was in place I was slowly being introduced to words that I wasn’t either comfortable with or didn’t understand their significance in the ways of the world. To me in 2011 is where these internalised struggles started people were in directly and later directly saying that autism defines every part of them, what they do how they think and feel. I wanted to know the mechanics of my autism to empower others that was all. I also was on a quest for my sense of personhood that I valued and still do first and foremost.
Autism Isn’t “One Thing”
Over the many years as a speaker, trainer and consultant it is only fair that Autism should not be seen as a mass of traits that affect the people who are diagnosed in the same way but as clustering of pre- existing elements that create one’s own unique profile. In 2010 I was introduced to Donna Williams’ Fruit Salad model of Autism which has helped understand the mechanics of me but a clear and firm realisation that seeing myself as a person first isn’t a negative thing but a positive thing.
Culture Shock – Part 2
As an advocate on the Autism spectrum I feel I have a personal and professional responsibility to not project the tired stereotypes and that the only perspective I can speak from is my own. Sadly, what I have seen is a very negative side of this culture which includes “neurotypical” being used as reversed prejudiced attack – I dislike this word as it creates more barriers and in my view isn’t the correct word to use. I have witnessed “them” and “us” language, separatism, militancy, bullying, death threats and character assassinations.
This in the last two years has been a real concern for me regardless of if you are on the spectrum or not this is no excuse for such behaviours. We should all learn to respect each other’s views regardless of disagreement. Personally I don’t see Autism as culture but as a disability where a culture has been built around it. It is a set of ideas.
Mental Health – A Personal Perspective
Because of these issues and others this has taken a toll on my mental health I have seen to much and it has made me question a lot things over the last year or so. I lost myself through over investment and low self-esteem and self worth. This is partly because my views were not seen on par with the status quo and partly the way in which I was told either through silence or attacks, I know I am worth more.
I worry about the people on the autism spectrum who are functionally non-verbal, those who have autism with a learning disability and parents and guardians are not getting their voices, opinions and realities heard and acknowledged.
Everyone is equal so therefore realities are equal (even if in reality it doesn’t happen) so if that is the case then the whole spectrum should be included? Surely?
Personhood First? Why is this Important?
I was born a person and I will not shackled into thinking that every aspect of me is my autism – for the reasons stated above I am going to explore other ventures such as art, poetry, fashion and so forth.
I am still an advocate, I will present speeches, present training, write and blog but with a different mindset to the world which I was eagerly presented to. I shall not miss this aspect of it – it is damaging and misleading and in my opinion needs to change before others get treated the same way.
Beyond The Label (Pastures Green)
Ever the thoughtless fable to define someone by a label
To glamourise or demonise is the answer listen to your call
Can you really speak for all? A court Jestor or fool?
Beyond the label is before loving the person for themselves
Out of the confines you shed a smile. It has been a while?
I look at the rolling fields and trees, the splender of the grass
The waving flowers and the earth, watching the world pass
The plodding dog eager to please, always up for a tease
I have no regrets my body is fluid it doesn’t stall to freeze
I sup on tea and live in moment -I want to please.
Paul Isaacs 2015