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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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Hope is Universal. It’s for everybody with Paul Isaacs #isharehope Episode 107

Chris+WilliamsMany thanks to Chris Williams for conducting the interview with me to following the I Share Hope project please click here.

Paul was branded as a “naughty child” at school. He was classically autistic in his early years and gained functional speech around the age of 7 or 8 years old. He went through mainstream school with no additional help or recognition of his autism. Consequently, he did not achieve his academic or his social potential and had very low self-esteem.

After a string of unsuccessful jobs, Paul’s mental health suffered. He was referred to mental health services and misdiagnosed with “Asperger traits with a complex personality”, which did not satisfy. Paul was diagnosed by an experienced psychiatrist, who diagnosed him with High Functioning Autism at 24 years old.

paul-isaacs-i-share-hopePaul wanted to promote autism awareness and help others on the autism spectrum, in the hope that others would not have to suffer as he had. He became a speaker for an autism organisation and has not looked back! Presenting speeches, training and conducting consultancy, Paul is now a freelance speaker, trainer and consultant who continues to raise the profile of autism at every opportunity. Having done much research, he is keen to explain the differences between Asperger’s Syndrome & Autism using Autism Consultant Donna William’s (Polly Samuel’s) ‘Fruit Salad’ model.

Paul firmly believes in retaining the ASD acronym. He says there should not be a negative stigma around the word ‘disorder’. His message is that Autism is a complex mix of ability and disability and every person with autism (and all people) should be a valued member of society.

Paul in his spare time likes to meetup with friends, create art and write poetry which is both a creative and relaxing output for him.

Hope is Universal. It’s for everybody with Paul Isaacs #isharehope Episode 107

Summary: Paul’s answer to the five questions! Listen to the full conversation on the player above; also available on iTunes, Stitcher and Soundcloud.

Question 1: How do you define hope or what is your favorite quote about hope?

Paul Isaacs:

Hope to me is…you got a feeling then create that into action and then hopefully you can make way for the action. Hope is the building blocks of something that you want to change and it could be anything where you actually instill positivity or at least objectivity in someone and go from there. It’s giving someone a realistic framework.

Question 2: Who has shared the most hope with you?

Paul Isaacs:

I would say it’s my parents because they gave me positive foundations, they have given me a sense of real life, introduced me to real life. Not candy-coating it, not giving it any sort of gloss. This is real life. They make me feel that negativity is a normal part of life, failure is a normal part of life, losing is a normal part of life – it’s a part of life. Success is brilliant, but it’s also about learning from failure and understanding your weaknesses.

Question 3: How have you used hope to make it through a difficult time in your life?

Paul Isaacs:

The one thing that was difficult for me as a person looking in hindsight or in retrospect is the way in which the community didn’t understand my behavior or understood where those behaviors were coming from. One of the sad things for me was how my parents were treated. Within the community, a lot of assumptions were made about their parenting skills. I suppose at that point, that would probably be the time where my parents would have wanted someone to talk to about the difficulties. I would say, looking back in hindsight, it was so much to do with me, but it was more to do with the alienation for misunderstanding. I just think it was a lot of misinformation and misunderstanding that caused the initial alienation.

It was constant criticism which then of course hurts the parents and when I went for education, it was never really anything positive. Of course it’s understandable because I was in a mainstream school – this is a non-specialized environment. Again, I’m not bitter at the teachers. Actually, my first year of primary school, that’s five years old and one of the teachers said “I don’t know what to do with him.” She was completely lost, but of course she’d be completely lost. It’s almost if you hear that saying “victim of circumstance”, they weren’t necessarily bad people. It was just a circumstance that happened and then it rolled on from there really.

Question 4: How are you sharing hope today?

Paul Isaacs:

I have only been doing this job for about six years in terms of speeches and consultancy and I have never ever seen a community with absolutely really nasty politics, militancy, bullying. I mean I’ve seen it on social media. I mean someone doesn’t say it’s the status quo, being ganged upon, trolling. I’ve never seen anything like it. Another thing that concerns me is the glamorization. You shouldn’t glamorize anything. Glamorization is not objective. If one size fits all condition so you start saying all autistic people are this and that and the other, what you’re doing is sadly creating a set of stereotypes and in any other context, would stereotypes be acceptable? No.

So, what I’ve learned is don’t get sucked in by it, do what’s in your heart, don’t define yourself or autism that it’s a superpower, that you’re special. The thing that has kept me grounded – I was born a human being like you and like anyone else. I was born a human being so I don’t overinvest in my autism at all. When I go to work, I’m a human being, when I go out there, I’m a human being. I don’t glamorize and I equally don’t demonize the issues. You keep objective. What don’t you hear about in autism? There are people with autoimmune conditions, metabolic disorders, tissue connectivity disorders, and neuropathy, things that affect the body and have an effect on that person’s functioning. In other words, autism is an adjective – it’s not a definition. It’s a stacking of preexisting conditions and depending on the stacking – you can get a more refined stacking, you can get a more complex stacking, you can get a more intermediate stacking.

When I speak, I don’t want you to remember me. I don’t want the ego to take over. I just want people to remember what I said.

Question 5: How should I (the listener) begin to grow in hope or share hope today?

Paul Isaacs:

(1) Get to know people.
(2) Say hello – connect with people.

Listen to the interview with Chris Williams and I on Soundcloud 


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Moving On – Political Egalitarianism

Egalitarian_and_equality_logoWe Can Do This

Moving Forward – With the recent positive and empowering comments made below with regards to the Government yes I believe we can move forward if people help each other we can challenge many things and call upon common sense and reality to do so, call upon the will for better future were Egalitarianism and equality for all, regardless of class, social status, gender, colour or religion – with social economy made fairer and accessible for all, social security/benefits more person-centred and empowering the ill and disabled, NHS to still be the NHS, the rich and poor gap to cease and to an end to hopelessness and poverty. I still live in hope and were there is hope there is a vision of reality that accounts everybody so despite this government coming people can still stand for a fair social world. 🙂

Let’s do this! 🙂

Paul Isaacs 2015


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Up and Onwards – Finding Balance

THANK YOU

Thank you for all your comments and shares of my poems. I have decided not to over-invest in the autism “culture” or politics anymore.

I will STILL continue to blog, present speeches, present training and advocate about autism BUT in balanced & neutral manner (in terms of NOT over-investing content wise, politics and “culture” wise and invest in personal time and so forth) this means that I will mentally be in balanced place. I am human being and to all of you I say to parents and people on spectrum (The Whole Spectrum) you are people fiMe Toddlerrst. 🙂

I am a writer, poet and an artist I say those are things worthy of pursuing. 🙂

I have stated in my opinions and listened to others that is great . My view still is we are all human and can learn from each other and in the context of autism that still applies no one person is the same, no one person can speak for all, but one can talk about their reality and if it helps someone great and if it doesn’t? Well that’s great too we learn from others not just ourselves. 🙂

Paul Isaacs 2015


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In The Autism World It Is Always Best To Remember You Are A Person

Paul Big LegsI Am Sorry But I Must Say Something

The “culture” I was told that would support me
It doesn’t it has brought me sadness, it has made me shackled
It has not “set me free” I want to live a simple life
Where people are equal for that very reason with strife

Arguments a plunder my heart sinks and my nerves crack like thunder
As I feel my self esteem pulled down into the depths of the under
I ponder to myself what is it all about? Can’t people get along
Not one scream and not one shout, echoes all about

No more I say – I have given it my all I can be the person I was
His name was “Paul” and that is the some of it all
Hold hands and hearts and rejoice for we are not all one voice
But many are unsung, drowned out and ignored not the people’s choice

My heart fills with sunshine when I know that being here is no plight
Real friends and family give me my real joy, no more fights
A family member told me tenderly remember who you are that set me free
An onward path of freedom, hope and reflective clarity

Conclusion 

Thank you to you all I have decided not to over-invest in the autism “culture” or politics anymore. I have stated my opinions and listened to others that is great . My view still is we are all human and can learn from each other and in the context of autism that still applies no one person is the same, no one person can speak for all, but one can talk about their reality and if it helps someone great and if it something you cannot relate too or don’t experiences equally great. 🙂

Paul Isaacs 2015


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Phoebe Caldwell – Intensive Interaction And Diverse Communication Profiles Within Autism

As a person on the spectrum I am a firm believer that whenever you are on the the spectrum you are on the spectrum you have a right to have a meaningful and productive life.

Phoebe Caldwell Copyright P.Caldwell

Phoebe Caldwell

Phoebe Caldwell

Tapping into the communication profile of the person is key and she looks at all aspects of the profile

  • Sensory Integration Disorder
  • Receptive and Expressive Language (Aphasia)
  • Telegraphic Speech
  • Gestural Language
  • Rhythm, Pitch and Voice Modulation
  • Touch (if a preference)
  • Exposure Anxiety & Emotional Regulation
  • Neurological Pain
  • Body Agnosias
  • Person’s Environment

Communication – Thinking Of The Person’s Sensory Perceptions 

Phoebe looks into the diversity of these communication issues from person to person as the brain’s of these person’s has different things going on, making connections in ways of relevance to that person, ways of meaning to that person it brings results of happiness, lowering anxiety and integration which is both positive and hopeful. I believe that rigid “models of communication” that sold as the way of communicating with a person with autism are wrong because it’s all down to the uniqueness of the person’s profile in other words there is no one way.

Pattern, Theme & Feel – Donna Williams

A world before typical interpretive language could mean that person has created their own language to try and integrate with the world around them, I know my early years I did and it was seen as “gibberish”, “mutterings” but I was trying in a world of visual and auditory distortion to reach out.

  • “Eeeeee!!!” is “happy” which includes clapping and jumpingBubbles
    Low sounds “ugggg!!!” – Is Unhappy
  • And/or “clicking” sounds with my tongue – Represents Anxiety
    Head hitting – Processing problems
  • Chest thumping – I would like come back to this world please
    Head banging – I can’t cope I need some help
  • Sniffing, Licking, Tapping, Mouthing, Rubbing Surroundings – What are you?Sculpting Faces – Who are you?
  • Tilting Head – I Remember You! And I like your company

I still find language difficult but I try my best – a lot what Phoebe does in terms of gestural language and telegraphic speech are from a personal perspective with beneficial for me to get meaning.

Conclusion 

Phoebe has an excellent presentation style and projects with passion her over 40 years experience with working with adults on the autism spectrum, she sees the people she works with as people and person’s first which is refreshing to hear and it shows in her work and the people she has helped of the many years.

Paul Isaacs 2014

PHOEBE’S WEBSITE

INTENSIVE INTERACTION


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Inclusion In The “Autism World” Means Looking Into All Realities – Not Projecting Stereotypes

Fruit Salad Analogy Copyright D.Williams

Fruit Salad Analogy Copyright D.Williams

All Autism Profiles Are Different

Every person with Autism has their unique profile, ways of processing, styles of learning, some have metabolic issues, some are not visual thinkers, some have different ways of communicating other than speech that is valid and equal. In other words Autism isn’t “one thing” so no one person can say (including myself) that Autism  is one thing and one reality for everybody, it is person specific, profile specific and environmentally specific.

Projecting True & Diverse Realities 

By acknowledging this you break down barriers, stereotypes and assumptions – inclusion is about acknowledging the realities of people and not projecting and feeding stereotypes which ironically excludes and alienates many people as a result. I don’t say “us” and “we” in speeches because it is my profile.

Some people have an Aspie profile others have an Autie profile and some people have a mixture and can relate to both. I have an profile Autie in terms of the mechanics.

People who also have use different forms of communication to get their words out, connect with friends and family have a right have their realities be know and and acknowledged as well as people with Autism and a Learning Disability too the same thing applies in terms of inclusion.

Validation Of Personhoods

I believe that all being said that personhood should be valid part of acknowledgment for people on the spectrum – so that an grow in a balanced manner.

Paul Isaacs 2014