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Autism from the inside


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Not Proud Nor Ashamed – Balanced About Being On The Autism Spectrum

Premature 1I Was Born A Human Being

I was born in 1986 and as far as I know I was born a human being just like the 7 billion other people on the this earth and of course I had my issues related to autism not being able to speak, not seeing the world as a coherent whole, faceblindness, receptive and expressive language disorders, oral apraxia, hemiplegia and list goes on. These thing are not “me” being face-blind isn’t me, being aphasic isn’t me and  being hemiplegic isn’t me either.

Autism A Describing Word

“Autism” is describing not defining for some people autism is a culture a place to be in and around a shared culture, however I do not believe that autism is a culture but has been created as such and maybe the question is who created culture? What rules apply? What rules don’t? What is “autistic”? What isn’t “autistic”?

I often wonder I feel however so more closer to being a human being then defining myself by one word which means different things to different people.

When I was formally diagnosed in 2010 with autism I was told by my parents that you are still “Paul” and this diagnosis only changes one thing that you aware of what difficulties you have had.

Autism Is Apart Of? Not The Defining Factor? 

I would agree with them and be understanding my autism and as clustering of differing conditions I was able to piece together my “autism” not as I saw fit but looking at deeply and introspectively enough to understand myself and hopefully empower others.

I know what autism is for me it is apart of not the defining factor I feel indifferent and balanced about what it means. I have done enough research and consultancy work to know that personality types, co-conditions, environmental factors, metabolic disorders, auto-immune disorderslearning types and communication styles,  will have an impact on the presentation of one’s “autism” so what does that mean?

  • Not one intervention works for all
  • Not all the issues are the same despite have a similar and/or same diagnosis
  • Not all people with autism have the same wants, needs, or desires
  • Not all people on the spectrum have the same communication profiles
  • Some people on the autism spectrum have auto-immune and metabolic issues which impact on functioning
  • Some people with autism have dietary disabilities which impact on learning and information processing 
  • Some people on the autism spectrum will have undiagnosed personality disorders and mental health co-conditions that keep being called “the autism” when they are not

I AM autistic but I HAVE immune deficiencies, I HAD cancer (apparently I can’t actually un-have it, its called remission) , I HAVE Ehlers-Danlos Syndrome… I also HAVE visual perceptual disorders, I HAVE language processing disorder, I HAVE mild learning disabilities.

I do not feel I AM these things, they are not ME, they walk alongside of me, often as parts of my autism, and whilst I AM autistic, just as I AM immune deficient, and I AM mildly learning disabled, Autism is not the sum total of who I am, it does not define my entire being or personhood, even if my personality traits are archetypally relatively ‘autistic’, I remain a person WITH autism… someone who HAS autism and, ok, IS autistic. The rest is war mongering militant separatist fascist crudola

– says Groucho
“PLEASE ACCEPT MY RESIGNATION. I DON’T WANT TO BELONG TO ANY CLUB THAT WILL ACCEPT PEOPLE LIKE ME AS A MEMBER”.

Polly Samuel 2013

Overall autism is not the defining factor of my me. My personhood that will always shine first not because I am ashamed of my autism nor because I am not proud of it either I remain balanced in what that means it gives me clarity and sanity. I am a human being first.

Paul Isaacs 2017

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To Friends for Friends What is Happiness? :-)

Smile .jpg

 

 This is sage works, thoughts and feelings from social media when I said about doing a blog about “What is Happiness?” I am pleased with the diverse and really lovely responses. 🙂

  • being understood by people
  • Happiness is what you make of your life and live it to the whole without
  • Happiness is fleeting
  • Joy
  • Happiness for me is seeing my children happy – x
  • I think he’s writing in the broader sense x
  • Happiness is my aspergers. [13 year old] son making me a fan from parts he savaged from dead DVD / equipment and lego – powered by USB and a solar panel to help me with my [menopause] hot flushes.
  • Happiness is walking around with a clear head, able to observe and enjoy the surroundings without anxiety.
  • Or eating a different food 🙂 x
  • Still seeing my little one even though I’m away visiting my Mum who’s 300 miles away.
  • Seeing my amazing son grow from being an angry, confused boy who struggled with ‘the world’ into an ever growing confident , young man with so much to look forward to 💙
  • Happiness is my dog x
  • A fleeting feeling when things are going well. All the more potent when it arrives unexpectedly 😊
  • All of my children bring happiness to me. I am so proud of who they are. I am also happy when my baby makes progress.
  • Happiness is being relaxed, safe and challenged in an enjoyable way.
  • GBU
  • Happiness to me is enjoying the moment without stress or fear but feeling completely at one with the world and relaxed . Its a strong rich feeling making life feel good when you experience it. X
  • Happiness is making a genuine difference through collaborative and creative autism awareness workshops. Nobody wins unless everybody wins 🙂 Hope to see you at one of your future talks, Paul. Best Wishes
  • Happiness is our son being happy. (We only have one child) 😊
  • Doing something I enjoy doing!
  • For me, I think there are very different sorts of happiness. Perhaps the most intense is being aware that someone I love is happy; if it is because of me, that’s even better. Another is feeling that I have done a good job intellectually in some way and increased the sum total of human knowledge. Another is the great feeling of physical well-being that endorphins give you after you’ve been exercising. I climb whenever I can, partly because it is great fun in itself and partly because whatever stresses and anxieties are bugging my life, I feel great once I’ve worn myself out doing it. These are all very important to me.
  • Happiness happens when i’m alone. Its like my brain gets some high by being alone
  • Happiness is being fulfilled. I don’t think the pursuit of happiness is very helpful in itself but the pursuit of being fulfilled..? That’s a slightly different goal but changes entirely how you look at life!
  • Happiness to me isn’t a result of anything, despite its arrival often being influenced by certain things or thoughts or thoughts of things – it is the glowy thing, that glowy thing within, and when it glows inside me, it beams around my bodymask making everything else seem more glowy than usual, and it can be passed around and shared like a flowy magnetic glitter-ocean, though can also be snatched and disappeared at an instant by the click of the claws of a happy-snatching monster.
  • Happiness for me, is…
    As a mum: To see my children achieve even the smallest thing independently. For my boy with autism, especially, when he’s made an independent decision, and when he chooses to hug me and show love. For my NT girl, hearing her laugh big and loud with her friends; watching her dance and hearing her sing.
  • As a professional: Feeling productive and part of a process to produce something worthwhile. Being individual but within a team.
  • As an autism volunteer: When a parent tells me that they no longer feel alone; seeing parents’ reactions when their children reach out to another child or young person and socialise for the first time at Parents Talking Asperger’s.
  • As a friend: Being there for friends whatever in good times and bad.
  • As daughter: Just being with my beloved parents even for five minutes.
  • As a Christian: Learning to be what God wants me to be to serve him and help others. Thanks Paul.
  • to me happiness is knowing that I have the resources to deal with whatever comes up. Not much to ask hey? X
  • You can choose happiness no matter what is going on around you. Happiness isn’t just being content – God gives us the opportunity to see good in all by allowing happiness. But it is a choice.
  • I’ve come to realised that for me, happiness is acceptance of the journey. 😁
  • Easy company with the people I love who are wholly accepting of who I am. X
  • Sitting outside with family and friends during a breezy day. And having a bon fire at night.

Paul Isaacs and many contributors 2016


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What I Have Observed In The Autism World – It Needs To Change

The Beginning 

Author ImageI 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.

Equalism

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