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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Autism, Emotions, Attachment and Borderline Personality Disorder

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Borderline Personality Disorder can be a difficult condition to live you may struggle to be “in your own skin”, have issues with “identity” and purpose in life, with other people and may flip-flop between different aspects of what you perceive your identity to be. Your emotional input-output may well disruptive and hindered.

Borderline personality disorder (BPD) can cause a wide range of symptoms, which can be broadly grouped into four main areas.

The four areas are:

  • emotional instability – the psychological term for this is ‘affective dysregulation’
  • disturbed patterns of thinking or perception – ‘cognitive distortions’ or ‘perceptual distortions’
  • impulsive behaviour
  • intense but unstable relationships with others

Emotional Dysregulation 

These four main areas may well vary from person to person and emotional instability and modulation may make you vulnerable to teasing and bullying in your early years as the reactions may well be more extreme and unpredictable in nature, you may push people away without realising or cling on to friendships that aren’t there. This can lead to internal problems with modulating one’s own emotions.

Cognitive Distortions, Dissociation & Psychosis

Cognitive distortions can come in many forms and affect how you deal with in particular negative emotions you may “lock them away”, project them through self-harming, other aspects that can distort reasoning are episodes of psychosis and a breakdown of internal and external reality this may be accompanied by episodes of dissociation.

Impulsivity & Challenges In Friendships & Relationships 

The person may want these aspects of life but maintenance for both you and the person you are friends with could be hindered by the symptoms above the changing winds of emotions, a lack of grounded identity and purpose, disruptive and sometimes paranoid thinking and firm and often “black and white” sense of what relationships and friends “should and shouldn’t be”, fear and loss and may have issues with attachment with people around them.

Coming Out The Other End?

I have documented my mental health issues over the years which includes having Borderline Personality Disorder and how that interacts with  the overall package within my “autism” and this is how of have dealt with these negative and sometimes behaviours.

  • People have their own thoughts, feelings and identities and one must respect a person’s autonomy.
  • Grounded sense of “self” I am a whole person with the ability to change.
  • Emotions are human and therefore not “abnormal” and are part of the human existence and managing them is crucial for healthy relationships.
  • All friendships and relationships are unique in their creation some last a lifetime others don’t and one must accept this.
  • I can help and empower people but not overbear them or smother them.
  • Seeking balance has a positive impact in your overall life and existence.

 

Darth Vader shows the key features of BPD 

  • He fears loss of people he is closest too. The Death of his Mother and not having a Father figure
  • He has intense and unstable relationships with the people he loves. His love for Padme and his and Father-figure friend Obi-Wan
  • He suffers from emotional dysregulation and has feelings of intense fear, rage, sadness and sorrow.  “I Hate You!”,  “Where is Padme? Is she safe is she alright?” 
  • He displays impulsivity and cognitive distortions through manipulation of Chancellor Palpatine. “In your Anger you Killed her (Padme)”
  • He has problems with self identity switching from “Anakin” to “Vader”. 

 

I have documented that when dealing with autism you must look at the rounded view that personality types and thus personality disorders can be a part of the package and if this is the case maybe we should looking a little deeper into what that means when managing a person on the autism spectrum who is in emotional crisis and the services that can be provided in the future.

Paul Isaacs 2017


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The Importance of Recognising Personality Types In Autism

Note this is from a personal perspective

Personality types are just as relevant to in which a person behaviours and responds to the environment around them, this includes interaction, communication, lifestyle choices, interpersonal choices etc.

Personality Types A Mix & Match

We can break down these personality types into their basic forms. In example I will use three different personality variants (people can have to 4 to 6) however this will simplify the point in question.

Personality Types in Autism 2017 Image

Personality Types Are Valid 

People on the autism spectrum will have personality types within their “autism fruit salad” like all other human beings people have overlapping personality types which can be fluid or concrete, complex or refined, narrow or lengthy which will be dictated by genetics and the environment they are in. They can also spill over into “disordered” extremes.

Is “Autism” All Of A Person? 

 I think that the main factor that gets missed in the overall ensemble when looking at ASD is personality traits/types. To define one’s whole neurology as one’s “self” ego-syntonic were as I see my neurology in terms of autism as part of “self” not the overall picture “ego-dystonic”.

This would surely help professionals, parents, guardians and people on the autism spectrum? To know that part of being a human is to do with the development of these aspects to?

“Autism” It Is Apart Of The Mix Not The Defining Factor 

To put in honestly that fact that I am face-blind isn’t “me” it is just how I processing faces, the fact that have simultagnosia as see in pieces isn’t “me” but is how I process visual information, the fact that I am aphasic and meaning deaf and struggle at times process the words being spoken to me isn’t “me” but is how I deal with receptive language they are part of the package, the fact that I struggle to do simultaneous “self and other” isn’t “me” but it means I need time to gauge and internalise information is again part of the package .

They come along for the ride and my personality types will dictate how I cope, manage and productively find an outcome for these different processing issues I have. If someone isn’t seen as person first then what are they?

Paul Isaacs 2017


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Autism -The Three Stages of Empowerment

Autism “Fruit Salads”(© Donna Williams 1995/2005/2014)

This is bottom to top analogy which implements all aspects of what could be in a person’s “autism fruit salad” to start off with the foundation is to understand the mechanics of what is within a person’s “autisms” (rather than autism). By looking at this we can separate it into these aspects.

  • Communication profile
  • Social-emotional profile
  • Emotional processing profile
  • Sensory Integration profile
  • Sensory Perceptual profile
  • Receptive Language profile
  • Expressive Language profile
  • Motor-coordination profile
  • Dietary profile
  • Auto-immune disorders profile
  • Learning styles profile
  • Personality types profile
  • Identity profile
  • Co-conditions profile

Interventions

These will be tailored to the specific needs of person’s profile/profiles looking holistically as well as professional for empowerment, guidance, social support, emotional support and/or any aspect of the person “autisms” that is within the mix. For example you could have someone who has exposure anxiety and dislikes direct confrontation and prefers an indirectly confrontational approach, is profoundly meaning deaf and aphasic. Think how you would build up that person’s profile and empower them?

An example

  • Gestural language
  • Aiding Mentalising by building up meaning and association
  • Being a follower not a leader or an expectant doer
  • Leave them wanting more and giving positive affirmations

Solutions

They will come in many forms as they marriage of each step relies on the one previous with regards to the “final step” this will be looking at what is working, aiding and empowering the person, their families, guardians etc. This could be put in an report or functional document for educational and professional services to have or it could be used as an information pack for friends and family the choice is yours.

Remember autism is not ONE THING it is a CLUSTERING of pre-existing conditions within one PERSON and that is the thing to realise that one person’s reality does not mean that is representational of all because that would mean a lot voices and realities would be left unheard it is time to change the landscape and starts with being open minded.

Paul Isaacs 2017


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Living Through The Haze: 2nd Edition

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When I wrote Living Through Haze in 2012 it was a journey of finding out why I ticked the way I did and what that meant to me it was year in the making and I thankful for it being published to help other son the spectrum and professionals.

I was also glad that I got a foreword by Dr. Michael Layton the psychiatrist who diagnosed me in 2010 with keen introspection he is in many ways the opening of the book a precursor to the journey.

Now in 2016 I feel I have gained a lot of new worldly experiences and wanted to update part of my book which I felt needed to be. With the kind help of Tracy Kilner who is on the autism spectrum she assisted in the editing process with multicaulis attention to grammar, punctuation and  sentence formation.

Image result for Dr, Manuel Casanova

The next was an Afterword by Dr. Manuel Casanova who reviewed the 1st Edition of my book  he clearly illustrates what can learned from a person’s experiences and how that can be a foundation for the future, he also in no holds barred fashion clearly demonstrates the emotional  and mental health difficulties that have happened due to circumstances difficulties during my life.

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The next person is James Billett he diagnosed me in 2012 with visual perceptual disorders and gives a formal introduction to the book using statistics and reflecting on what can be learned from the reading this book.

Other elements included additional chapters and the expansion of the “autism fruit salad” section of my book.

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The final person who I would like thank in the process of this book is Donna Williams (Polly Samuel) as you know I have written many blogs, articles and presentations in conjunction with her extensive work in the field of autism. I would not know anything about he mechanics of my autism with her kindly help during the early 2010s. I would not be able to speaker in such away about my autism or autism in general without help. I value her professional input, caring nature and friendship.

My family and friends have always been there during times of need and I value and cherish their company and being the rocks that they are.

LIVING THROUGH THE HAZE 2ND EDITION PAPERBACK 

LIVING THROUGH THE HAZE 2nd E-BOOK 

Paul Isaacs 2016


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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