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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Colour Me With A Personality – Autism, Personality Types and “Disordered Extremes”

Malice Mizer Bara No Seidou 20004All human beings have personality types they are part of what makes “soul” along with are senses, information processing, reactions, life experiences, our friends, family members and cherished ones.

Many  a disagreement has been  made about me bringing up about personality types in the context of autism people have quite rightfully misunderstood my intentions or misunderstood the point of points I was trying to make so  lets look at this a bit more.

Of the 16 common personality traits identified by Oldham, all of us will have around 4-6 of these which tend to be our main personality traits, what collectively presents to others as ‘who we are’, our ‘self’, ‘personhood’, ‘identity’, ‘soul’. When these are not overdeveloped, they present merely as ‘traits’.  However, a particular personality trait or traits can become overdeveloped or stay at such a ‘volume’ that the person is functioning and presenting in the personality disorder range for that trait.  If they don’t break free of this they will progressively so identity with their own personality disorder they will take it as their ‘normal’.  Donna Williams (Polly Samuel)

NOT EVERYTHING IS THE “AUTISM” 

It is not restrictive or silly to point out that personality types do exist within human beings and in context of this segment with people with autism. Human being not only have 4 – 6 main personality types (no we are not machines we “encoding”) and you can also have what is called “secondaries” (mine I would say are conscientious and adventurous) that come along for the ride and they may well clash “internally” with the main traits themselves.

This is fluid and normal there is of course genetic factor to these traits maybe you can see “yourself” in another family member certain behaviours you can relate to and/or acknowledge, just like you can have personality clashes at work because you cannot relate to how some operates this is normal.

Some of the most common personality disorders in people in the autism spectrum include Obsessive-Compulsive, Schizoid and Schizotypal personality disorders and Avoidant and Dependent personality disorders.  Those with dissociative disorders may more commonly experience AvoidantSelf Defeating, Schizotypal, Borderline or Passive-Aggressive personality disorders.  Some personality disorders are commonly misdiagnosed as mood or anxiety disorders but unlike mood or anxiety disorders, personality disorders generally fail to respond significantly to medication.  Donna Williams (Polly Samuel) 

EGO- SYNTONIC & SEEING THE PERSONALITY DISORDER AS “THE AUTISM”

Ego- Syntonic Meaning Consistent with one’s sense of self, as opposed to ego-alien or dystonic (foreign to one’s sense of self). Ego-syntonic traits typify patients with personality disorders.

If a person or people around the person “sees” their “autism” as everything about them (including dictating their personality) then hypothetically if they acquired a personality disorder would they see it just apart of of their autism? Not needing to be changed? Or modified?

What if it is having an impact on the person but they just can not unpick or see that it is an issue and it is having an overall impact on their functioning? Their judgements? Their reactions? Their interpersonal skills? Their daily living skills? What then? This is food for thought from both a practical sense and how specialists can diagnose and treat those with personality disorders on the autism spectrum.

MY FOUR MAIN PERSONALITY TYPES WITH THE DISORDER VARIANTS

As you can see on the left I have my personality types and on the right I have the “disordered” variants of those types the explained in the middle is clear these “stresses” can cause the “normal” personality types to expand and “grow” the person themselves may well be observed by others as being “different” quick to temper, quick to cry for example their reactions are heightened to an extreme.

For more info on personality types look at www.ptypes.com

2007 PERSONALITY DISORDERS A PERSONAL PERSPECTIVE

In 2007 I suffered a nervous breakdown my parents had noticed a change in “me” looking through my medical records two words sprung out at me “borderline” and “schziotypal”.

 These had an effect on these five main areas of functioning

  • Personal Judgement
  • Interpersonal Skills
  • Personal Skills
  • Professional Skills
  • Daily Living Skills

Borderline Personality Disorder

It is characterized as:

A pervasive pattern of instability of interpersonal relationships, self-image and affects, as well as marked impulsivity, beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
  1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-injuring behavior covered in Criterion 5
  2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.
  3. Identity disturbance: markedly and persistently unstable self-image or sense of self.
  4. Impulsivity in at least two areas that are potentially self-damaging (e.g., promiscuous sex, eating disorders, binge eating, substance abuse,reckless driving). Note: Do not include suicidal or self-injuring behavior covered in Criterion 5
  5. Recurrent suicidal behavior, gestures, threats or self-injuring behavior such as cutting, interfering with the healing of scars (excoriation) or picking at oneself.
  6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).
  7. Chronic feelings of emptiness
  8. Inappropriate anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).
  9. Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms

Schizotypal Personality Disorder

It is characterized as:

A disorder characterized by eccentric behaviour and anomalies of thinking and affect which resemble those seen in schizophrenia, though no definite and characteristic schizophrenic anomalies have occurred at any stage. There is no dominant or typical disturbance, but any of the following may be present:
  • Inappropriate or constricted affect (the individual appears cold and aloof);
  • Behaviour or appearance that is odd, eccentric, or peculiar;
  • Poor rapport with others and a tendency to social withdrawal;
  • Odd beliefs or magical thinking, influencing behaviour and inconsistent with subcultural norms;
  • Suspiciousness or paranoid ideas;
  • Obsessive ruminations without inner resistance, often with dysmorphophobic, sexual or aggressive contents;
  • Unusual perceptual experiences including somatosensory (bodily) or other illusions, depersonalization or derealization;
  • Vague, circumstantial, metaphorical, overelaborate, or stereotyped thinking, manifested by odd speech or in other ways, without gross incoherence;
  • Occasional transient quasi-psychotic episodes with intense illusions, auditory or other hallucinations, and delusion-like ideas, usually occurring without external provocation.

PEOPLE WITH AUTISM DO HAVE PERSONALITIES

These had a great impact on my overall functioning and it took over two years to bring the “volume” down on these aspects of my personality to levels of “normality”.

The first issue I want to address is within the autism community? I want to healthily challenge people who do not think (or acknowledged) that firstly personality types exist with people on the spectrum and secondly if they do what are they? And thirdly do you think you have ever had any personality disorders either yourself? Or in a loved on? If so what helped?

COLOUR MY PERSONALITY 

To acknowledge personality types is not constricting it is in fact the opposite the world is an can be a colourful place and differing personality types are part of the package for everybody.

Paul Isaacs 2016


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I am not a “Label” I am A Human Being First

Baby Pictures High ChairI don’t know about you but when I was born I was born a person, lets ditch the rhetorics and start listening to other peoples realities and opinions (regardless of were they come from) and accept that disagreement will come but everybody as their own things to say. Lets not be restricted by a “box” or the what is “in crowd” I thank the people who have said their realities with conviction, honesty, rawness and carrying on their lives as best they can be the example and don’t just claim it. I am not “autism” if doesn’t “define” my being it rides along life it not a “definition of my life”. I acknowledge those on  and off the spectrum who are honest about the realities lets start listening and going from there keep going even if you don’t do not feel listened to, no popular do not worry at the very least (or most you have been true you and have not be influenced by the dominant wave.) 

Fanciful fable a baby in a cradle
New life and new wonders able
A hand from “in crowd” does beckon
I walk in feel more lonely I reckon

I’m not those things you said “we” all are
I am not a part of a redundant single star
You say things as fact, straight lines so subjective
When all I want to be is “me” more reflective

A puppet on a string I cut them off and look around
The strings a still attached with words and the same sound
I got back to the “real world” so eagerly with open arms
It may not be perfect but honesty has its ethereal charms

I am part of the humanity no label defines me I shall deface
Of flesh and blood and gleefully I move from place to place
The words are rubbed away sounding through the sky
I now what I am from life to death a smile and a sigh

Paul Isaacs 2016


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“Autism” Is Not A Single Thing – So Why Is It Still Being Presented As That?

20160730_121048DIFFERENT PRESENTATIONS 

No one “owns” Autism that includes me, you the person next door- I think it is important to know what “autism” and “asperger’s” in terms of profiles are the presentations that come with them.

POSSIBILITIES AND OPENNESS  

What are the components? (information processing, environment, mental health, personality, identity, learning types) By looking at these pieces you can understand what to do (or not to do) there are many different paths so by being open to possibilities.

GOING AGAINST THE GRAIN

I know my views aren’t popular for one because they go against the status quo of “neurodiversity” that is fine.

LOOKING BEYOND THE RHETORICS

Has anybody wondered what autism really is? Has anybody can beyond the passe rhetorics, memes or generalised views to know how to understand it? To empower  people with autism, their parents and professionals etc?

LOOKING DEEPER MEANS LOOKING AT WHAT IS THERE

Isn’t it time to know what makes up a person on the autism spectrum?  Dig deeper? I can tell you this is what my autism is made up of –

  • brain injury
  • hemiplegia
  • developmental delay
  • speech and language delay
  • language disorders
  • tic disorders
  • mutism
  • related anxiety disorders
  • personality disorders
  • learning difficulties etc.

This took six years of research and self-reflection to get to this point.

 I say to people reading this do not remember me for saying but remember the template that is being presented and what you can relate to and do not relate to

LETS THINK ABOUT IT 

For a so called “accepting autism community” I have seen plenty of internal upset, bullying, gas-lighting, trolling,  arguing, tears and upset to last a life time. Autism has created a “culture” around itself and personally I have seen nothing healthy come out of it. I came into this in 2010 with my parents we quickly got out of it my parents still don’t “get it” the militancy by people on and off the autism spectrum and I have recently been reminded of why I stay clear of it.

The people and parents who seen themselves as human beings first  (not defining by their “autism”), who are living their lives not consumed by labels and redundant definitions are the ones who are great examples.

This isn’t a game and when you are toying with people’s feelings directed at people who dare to above the parapet a speak from the heart and not tow the line Is this fair? I am all for healthy disagreement lets start listening.

Paul Isaacs 2016


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Autism & Developmental Asexuality?

IMAG1128

Note this is from a personal perspective 

I was talking to a speech and language therapist after watching a program on a young lady he decided to be come asexual by choice in other words she had made a conscious decision to do so and very happy.

Developmental Asexuality 

I was then got me thinking about why I am asexual? I never made a choice to be so it wasn’t a conscious decision  on my part. Talking to the the speech and language therapist about different stages of development it would put in in the fold of wanting meaningful friendships and keeping and that is between the ages of 9 – 14 years old. This I would certainly agree with.

Studies? 

I wonder is there is a possible group in which this asexuality is due to a developmental “blockage”? If so would be interesting to see any studies on this.

Paul Isaacs 2016


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Over Generalisations In Autism

20160730_114554When people think of autism? One may need to consider this that is has never been a singular thing. In my previous blogs I have mentioned people like Donna Williams and Manuel Casanova who in their own unique style content has indicated through different observations and experiences that autism is not a generic, unmovable or flat presentation and that the components are different between person to person. That in turn means that different sources of help, aid and empowerment would be needed. It is very individualised.

Generalisations? Too Easy To Digest?

Generalisations are easy to digest I suppose they create a bubble in which the person has these sets of “traits” and one goes from there,  to point out the massive differentiation in autism it is surely more than healthy and beneficial? Also leading  finding why and how the person in question could be helped and empowered.

The Issues Around Autism “Culture”

“Autism” is not a culture that (to me) doesn’t make sense at all fitting into one individual into   culture means surely you are treading into many further degrees of separation which for me is very uncomfortable to consider or even acknowledge as something I would want to do or pursue as a goal.

To over invest in a label  means you are seeing your self as a single thing  and one definable thing and not seeing that like all human beings ALL people have different interacting personality types, environments, experiences, thoughts and feelings.

Something I strive for seeing the validity of being rather than over defining. This relates very much to over generalisations of “us” and “we” do this and “us” and “we” don’t do that if you step back think about this scenario and ethos is that (as the bigger picture) over time helpful?

Conclusion

The “autism world” has many hidden voices and experiences that people need to hear acknowledge and affirm reality for them – I once wrote in a previous blog that it is about listening to ALL people’s views whether they are parent, professional, person on spectrum or person off the spectrum.

Breaking down barriers of generalisations will lead to hopefully an fuller open dialogue in which we CAN learn and acknowledge from others with out man-made barriers which have been created in the “autism world.”

Paul Isaacs 2016

 


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Meeting Up With The King’s

 

This week I had the pleasure of meeting up with the King’s they are family that live in the north of England in the Wakefield. Sharon and Richard have three children on the autism spectrum Rosie who is diagnosed with Asperger’s Syndrome, Lenny with Classic autism and Daisy with Kabuki Syndrome and Classic autism.

Staying with the family was very interesting and reflective on my part, as all the family showed deep love and care for each other being honest about the difficulties and  balanced about them showing deep care and empowerment for each other.

Their kindness and humility was reflected in the hospitality shown to me and the others we met on our travels to the park during my visit it is sometimes the little things that matter as much as the big ones. I look forward to meeting them again.

Paul Isaacs  2016