Paul Isaacs' Blog

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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Future Diagnosis’ – A Further look Autism and Asperger “Fruit Salads” & The Inner Mechanics

The Changing Landscape of Autism Diagnosis

Looking how the scope of how the autism diagnosis has changed over the decades here is an overview

  • 1940s and 1950s – Autism was considered a form of attachment disorder
  • 1960s – Autism was considered a form of “childhood psychosis”
  • 1970s and 1980s – Autism was considered a form of mental retardation
  • 1990s – Asperger’s syndrome was added as a diagnostic criteria
  • 2000s to now – Autism and the impact of sensory integration issues

The truth is autism is has different trajectories and components it is best to look at autism as 3 dimensional a stacking of pre-existing syndromes/conditions/disorders that are person-specific.

So let’s look at the breakdown between “Autism” and “Aspergers” Fruit Salad looking at through the lenses of Donna Williams’ analogy.

 

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Autism “Fruit Salad”

 

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Aspergers “Fruit Salad”

 

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Conclusion

On the surface “Autism” and “Aspergers” may appear the “same” but digging deeper and looking at the profile differences and what makes up the differing profiles surely means that the wants, needs and interventions will be specific to the person in question and what they need will not be the same. Autism is not a generic “one size fits all” condition it is made up of many different elements specific to the person.

It is my wish that in the future when some is diagnosed with autism they will look a the full package this would include potentially different professionals being involved if differing diagnosis are willing to be made such as –

  • Speech and Language Therapists
  • Neurology Specialists
  • Dietary Specialists
  • Genetic Counselling
  • Gut, Immune and Metabolic Specialists
  • Mental Health Psychologists & Psychiatrists
  • & Other Empowering Interventions

 

Paul Isaacs 2017


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Looking At What “Autism Is” Is That The Future?

I have been is the autism “world” as a speaker, trainer and consultant for well over seven years, I do not pretend to know all the answers nor I do project or promote that I have them all I can only speak from first hand experience of myself and the others that have been involved in professional capacity.

A 3D Diagnosis For The Future?

I what would like to offer a foundation of empowerment not because I know best but to give people the opportunity to find out about their “autism” what is made up of and the “mechanics” that go with it. I have wrote and documented my autism the fact that is made of being brain injured at birth, speech and language delays, sensory agnosias, aphasia, apraxia the fact that I have dealt with mood, impulsive and anxiety disorders also.

The fact that being borderline made me emotionally unstable, struggled with boundaries and also being schizotypal made me odd, aloof and detached from people and at times society. These “elements” are all about of my “mix” and words not only for these “pieces” empower not only the person in question but the services they come into contact with also family and friends.

Fruit Salad 2017

 

Looking Deeper, Looking Forward, Education & Empowerment

I went through my autism “fruit salad” at an event recently and asked if the diagnosis had pointed out the specific pieces how would they have felt? Also would this model benefit them it was a conclusion yes because understanding autism on thing but understanding the pieces of their children’s autism was felt to be very important, helpful, empowering and overall was a beneficiary to the services that they would come in contact with. Giving them not just the word “autism” but what it meant for them specifically.

My Autism Fruit Salad 1 Updated 2017

Autism Fruit Salad 2 2017

Autism Fruit Salad 3 2017

Conclusion

“Autism” is not “one thing” it is specific to each person also people do not have an “autistic personality” exclusive although personality types like solitary, idiosyncratic and conscientious would look more “autistic” but are smaller elements in the overall mix. I do believe that a person’s autism is everything about them because human beings are made up much than one element.

You can get  “non-autistic” personality types the people that challenge the stereotypes who could be equally adventurous and mercurial in their ways. For 2017 lets look at this from a broader perspective and empower people with knowledge that is worthy of making a difference.

Paul Isaacs 2017


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Celebrating My Gramp’s Life

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My Gramp had a wonderful send off yesterday the night before we said our goodbyes at the chapel of rest. He looked serene and calm in blue. I touched his face for the last time his skin soft and his hair the texture of snow. The next day we went to Oxford Crematorium to pay our respects and celebrate his life.

I firmly believe that in order to go to a funeral you must have known the person on a superficial level and that you aren’t there for your own selfish agenda to cleanse your sins of not being there while they were living, treating them poorly in life and making it all about you it is the ultimate hypocrisy.

I am so glad it was a celebration of his character, ethos, humour and outlook.

Gramp was a kindly fellow who cared deeply for his friends and family and would spread his kindness to those who took time to get to know him. He was funny, serious, charming, witty and above all loyal. He took shit and as another friend said made sculptures out of them from the people who decided to damage his character by spreading rumours to the verbal tirades he always knew who he was and carried being true to himself thats is what I loved about Gramp he loved life.  xx

Paul Isaacs 2017


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To My Gramp – Gilbert Harpwood A Man Who Enjoyed Life

My Gramp Gilbert Harpwood was a man who enjoyed life to the full he was an avid gardener tending to his vegetables and flowers with relish and passion, eager to plant his seeds that would blossom each year such as his runner beans, cabbages and brussel sprouts they tasted lovely and as he said it is because they’re organic.

Gramp 1930s

He was fascinated by the weather noting and logging the rainfalls and temperature changes through the years in his little note book which he called his “diary” which he has many of and would be interesting to look back at what he noticed over the years.

His other main passion was football and he was an avid support of Oxford United all of his adult life going to the Manor Stadium and also Kassam, he made many friends there and made lots of fans around him laugh with his antics and child-like wit which came in the form of chants, laugher, heckling and being accompanied by his little teddy mascot called Messy which he put in his bag with his little head poking out. Gramp always liked to imagine he was watching the game too.

Gramp Oxfod United.JPG

My Gramp was a pragmatic, idiosyncratic, humorous and a largely misunderstood man he was caring, loving, helpful and affectionate in his own unique way to his family and close friends. He was a very guarded man and liked to keep himself to himself only opening up to people whom he felt comfortable with. I am grateful for knowing him and spending time with him listening to his stories of old, wisdom, humour, political views and so forth.

My Nan and Gramp had a wonderful relationship which last over 60 years during his passing she viewed him as her rock they had a deep love for each other which last a lifetime with treasured loyalty to his wife, both sharing precious moments such as marriages, births and anniversary celebrations. Gramp’s favourite time of the year was Christmas time in which he would like to play the jester eagerly taking part in jokes, enjoying the food, the TV programs and other festivities with the family.

He made firm contributions to village such as aiding the management of the roads around the area, letting the council know about filling in the pot holes and also taking a general interest in village life attending the meetings at the hut.

 

Nan & Gramp 50th Wedding Anniversary

He was diagnosed with Asperger’s Syndrome a form of autism in 2011 at the age of 84 which in many ways surprised me that he was open enough to go to a diagnostic session and open up about his life with such candour and honesty, when the session was finished he concluded that is “why he was like he was”.  Reading books on the subject from the library.

Despite his cancer he carried on till the end a lover of life and person who wanted live and he will do in our hearts and minds forever if there is a cloud up the sky with a garden patch ready to be tended to I know my Gramp will be there ready to tend to it.

I love you Gramp and thank you. 🙂

Paul Isaacs 2017

 


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Autism Has Wider Palette Of Experiences & Presentations

autism-pyramid-updated-2017

A Human World to be lived 

I haven’t blogged for a long time and sometimes that is fine you need to recharge your batteries and focus on other things in life. I have since realised that I have been writing for sometime on a vast array of different subjects, topics and genres. That being said in the years I have been in the “autism world” However well a live in a human world.

Looking Inwards and forward

The overall motif and thinking has progressed on a personal and professional level this is through self awareness and the awareness of other realities, perspectives, opinions, agreements and disagreements which are all part of the melting pot.

To The Future and beyond 

Looking at the title maybe it is self-explanatory “a wider palette” means that a I feel one of the ways in which autism awareness can go forward is the reading, listening, talking and communication as many differing presentations as possible.

SEEING THE PIECES & HAVING SIGNPOSTS

To ditch the militancy and politics that is harming and taking away from needs to be done, to ditch unhelpful stereotypes and to a see autism as a “fruit salad” that will educate and empower so that all voices and realities can be heard and acknowledged.

This means that the correct interventions, advocacy and support can be made some of this can be from the family and friends, other community based services and others professional.

fruit-salad-model-2017

 Autism to Autisms Many Pieces Of The Whole….

With that being said how many areas of “functioning” regardless of presentation could be help if we saw autism and pieces that are specific to each person? So once those pieces have been discovered and found  out then meaningful interventions can resume tailored for them be it.

  • Communication
  • Personality Types 
  • Sensory Perceptual
  • Sensory Integration
  •  Dietary 
  • Auto-Immune
  • Learning Styles
  • Life Skills
  • & More

 

Paul Isaacs 2017


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To Friends for Friends What is Happiness? :-)

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 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