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

I 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 disorders, learning 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

Autism “Specialism”, Personality Profiles, Reverse Bigotry & Being Human

 

Many times people often focus on the person’s autism as all of “them” this means that the “autism” is the reason for all of their behaviours, reactions, actions and motivations. If you are on the autism spectrum you may well be aware of autism “stereotypes” such as an overtly logical, literal processor and extractor of information. If this is true in some cases it is far from the bigger picture and is far from the broader palette that is actually out there.

Let’s look at three examples of differing personality types

For the person with a Idiosyncratic personality type not fitting in a running along their own path maybe something that has brought them joy and/or isolation by “dancing to their own beat”, being naturally non-conformist, inventive and intuitive.

The Idiosyncratic Personality Type believe that your interests lie in (Oldham, pg. 252):

• not being like anyone else
• marching to your own beat
• being unconventional
• being original
• standing out from the crowd

For the person with a Conscientious personality type they may be fixed on being productive, useful and striving for success the fear of failure and self loathing could hinder their development for continued perfectionism, however being pragmatic and ordered in nature along with highly motivational work ethic has its benefits.

The interests of the Conscientious Character Style include (Oldham, pg. 62):

• having strong moral principles and being certain
• not resting until the job is done and done right
• being loyal to families, causes, and superiors
• working hard to do well
• achieving and accomplishing things
• loving to work and be challenged

 

For the person with a Solitary personality type being focused on being alone, in a “inner world” and not be swayed by praise, acknowledgment or criticism this may come with a lack of social and emotional development however their comfortable observations of the world offer patience, tranquillity and healthily reserve.

The interests of the Solitary Personality Type include (Oldham, pg. 275):

• not needing anyone but yourself
• being unmoved by the crowd
• being free of the need to impress and please
• being free of emotions and involvements with others
• having clarity of vision rather than sentiment and intimacy
• discovering and recording the facts of existence

The Problem With “Specialism”

Nobody is better than anyone else and that accounts for people on the spectrum too. I strive for balance, objectivity, kindness, empathy and equality. If someone is going to be militant with the focus being that people off the autism spectrum are collectively “wrong” then reverse bigotry is still bigotry and doesn’t into the framework of empowerment it creates more divisions, voices, lost, realties not acknowledged that in not progress but quite the opposite.

Personality types and the richness of them are for all people to share I have noted that mine are idiosyncratic, serious, mercurial and self-sacrificing by narrowing your bandwidth and not acknowledging that personality types have much to about development as the neurological and biological challenges means you are missing the fundamental part of “humanness.”

Promoting equality in difference and diversity, is what I believe in and I’ll strive for the opportunity to do that, wherever I find it.

Any derogatory or dismissive stance relating to non-autistic people as a group is no less a form of prejudice as any in history.

Polly Samuel

Autism, Personhood, Personality Types and Identity

Theses aspects of a person/human being  are different for all but at the same time very real so if someone’s “autism” is just seen as “collective autism” in other words all the “traits” are “autistic” then that reductive way of perceiving will mean that the personhood and associated traits may well be ignored. This will have an impact of self-identity, self-worth and could potentially push these personality types into “disordered extremes” impacting on functioning further.

Looking at the full package of autism that does include personality types and disordered extremes and the inter-relation that have on the person’s perceptions, mental health, identity and reactions to environment.

Paul Isaacs 2017

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.

 

Autism “Fruit Salad”

• Higher prevalence of Hyptonia
• Higher prevalence of Sensory Perceptual Disorders
• Simultagnosia rather than Social Emotional Agnosia common
• Oral Apraxia of speech
• Aphasia and Verbal Agnosias common
• Higher prevalence of Exposure Anxiety rather that Avoidant Personality Disorder
• OCD is common rather than Obsessive Compulsive Personality Disorder
• Schizotypal/Idiosyncratic and Dependant/Devoted Personality Type/Disorders and common
• Higher prevalence of Gut, Immune and Metabolic Disorders & Associated Genetic Anomalies
• Dissociative Disorders are common
• Tourette Syndrome is common
• ADHD a common comorbitiy

 

Aspergers “Fruit Salad”

• Dyspraxia is common
• Higher Prevalence of Sensory Integration Disorders & Light Sensitivity
• Social Emotional Agnosia rather than Simultagnosia
• Faceblindness is common
• Semantic Pragmatic Disorder and Literal rather than Aphasic/Verbal Agnosia
• Obsessive Compulsive Personality/Conscientious Personality & Sensitive/Avoidant Personality  Type/Disorders Exposure Anxiety
• Schizoid Personality /Solitary Personality & Dependant/Devoted Personality Types/Disorders   Common
• Lower  prevalence of Gut, Immune and Metabolic Disorders & Associated Genetic Anomalies
• ADHD is a common comoribity
• Alexithymia is common

 

 

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

Managing Grief and Loss with Visual Perceptual Disorders

Note this is from a personal perspective

Grief is a normal state to be in when you lose someone you love and have connected to and I know that this feeling or more accurately abundance of differing feelings that accompany it are part of the process.

Visual Agnosias – Deficits In Memory Perception & Visual Association? 

I have no pictures of my Gramp none that “spring to mind” I cannot “visualise” or have pictures in my mind my “meta-reality” (a person’s inner world/consciousness)  is not made of pictures or movies as a form of association. It is made of of smells and textures I made a point when I said goodbye to my Gramp at the chapel of rest to stroke his face and hair so would have a physical association of the firstly the bond we had and secondly my way of saying goodbye to him and his body.

Bereavement Counselor 

I went to see a bereavement counselor today and I was thankful that he was able to assist me not only in the human element of my grief but also adapt his way of describing different interventions and explanations to me.

 This is what he used in  the session 

• Contextual telegraphic language “painting his words” with gesture and placement and meaning
• Allowed time for me to do “all self no other” and “all other no self” in order for me to express and receive the information
• Compartmentalised my  own emotional states giving them a reference point and also suggestions in how to manage my emotions
• Understood I have a history of mood, compulsive and anxiety disorders associated with somatisation disorder
• Allowed me to be creative in expressing my emotions through creative writing, poetry and art

 

 

Addressing The “Pieces” Of The Jigsaw

So what parts of my “autism” are being addressed?

• I would say firstly his looking at a level of information processing delay and giving me time
• The next would be that fact that because of visual perceptual disorders having a level of visual agnosia in the areas of meaning (semantic), object (simultagnosia) and faces (prosopagnosia) means that using gesture, placement and telegraphic language backed up with word emphasis in the right areas helps me internalise the words better assisting with the level of aphasia I have
• Looking at my own emotional states is assisting with alexithymia and overall giving me time to integrate “self and other”.

 

Conclusion 

I would say that my grief is human and that I will get through this with at times very basic but meaningful interventions I do however hope this helps people with similar issues to my myself regardless of being on the autism spectrum or not.

 

Paul Isaacs 2017

 

 

Autism, Words, Aphasia, Body & Visual Agnosias

Note this is from a personal perspective

Aphasia and Words

Words in my mind felt ethereal, transient and distant the internal garbel of sounds, pitches, tones, hums and inflection as if my unconscious mind was trying so desperately to find the words, string the sentences anew to project and receive in “real-time” on some level I believe in my later years that is what I was trying to do. The jumble of a “salad of letters” in my mind could be found and then lost in equal measure.

Oral Apraxia and Word Finding and Formation

The functional element of my speech was delayed in both speech and language the aphasia was both receptive and expressive in nature with a high instance of anomia (word finding). The other element is oral apraxia which rendered me unable to form the words I would find leaving me disconnected and frustrated.

Receptive Aphasia, Body Agnosia & Associated Visual Agnosias

The receptive element of speech for example someone talking to me was the same external garbel as was in my mind a silent war between expresser and receiver trying to find clarity amongst the hidden mist of miscommunication.  The inability to perceive my own body meant a level of internal groundedness was  not their and context was missed time and time again. I relied on the touch, taste, smell, texture these feelings gave me a context to grab onto and create an association it is no surprise to me that my Mum through I was deaf and blind because that is exactly how I was behaving my language processing and sensory perceptual systems (visual agnosias) were so scrambled the credible and most importantly meaningful option was to “feel to think”, “feel to relate”, “feel to connect”, “feel to be”, “feel to extract” and the list goes on.

Creating My Own Language

Before interpretative language sets one could be creating their own language through association, things they have heard and seen on the television, jingles on the radio or other stands of information that bears relevance to an event and/or emotional meaningful response. In my case this was form of communication which looked meaningLESS to the listener but was meaningFUL to me as the expresser.

Memory and Internal Mentalising 

A memory with no associative images for words and no words for images meant my style of learning and integrating was not logical in nature nor literal this is secondary reason why my language and visual-verbal processing was delayed and slower, however as the years progressed I was building up a slow repertoire to words and my functional speech came around 7/8 years old this was expressively and developmentally in terms of content and formation of a 3 year old this new “voice” at times rendered me equally mute and frustrated.

Conclusion

Looking at the broader instance of different aspects that make up language processing difficulties in autism one needs to look at what is making the difficulties piece by piece, how that has an impact on the person and then work on positive and empowering and meaningful interventions.

Paul Isaacs 2017

Autism, Walking Gait & Hemiplegia

 

Note this is from a personal perspective

As I have documented before in previous posts hemiplegia is a part of my autism profile which in my case is associated with a traumatic birth, prematurity and brain injury due to a placental abruption.

This affects the right side of my body, which caused me to have problems with the following.

• Left-right orientation
• Turning on one side (regardless of where the noise, auditory or tactile stimulus is coming from)
•  Using the dominant side of body for tasks that involve both sides of the body
•  Having an unusual/abnormal  gait which involves the right leg stiffening with a lack of bending in the knee and the leg itself rotating away from the other leg

What are the effects of hemiplegia?

It is difficult to generalise: hemiplegia affects each child differently. The most obvious result is a varying degree of weakness, stiffness (spasticity) and lack of control in the affected side of the body, rather like the effects of a stroke. In one child this may be very obvious (he or she may have little use of one hand, may limp or have poor balance); in another child it will be so slight that it only shows when attempting specific physical activities.

Copyright © 2007-2014 HemiHelp

Gait refers to the controlled manner of walking or moving on foot.  The functioning of the nervous system and the musculoskeletal system determines the gait pattern. In children who have hemiplegia, this delicate system is out of balance and often results in different types of gait.

Gait in the Child with Hemiplegia

A child with hemiplegia may have a tendency to walk with the toes on the affected foot striking the ground first, instead of the usual heel strike. This “toe drop” often results in our kids taking quite a few falls and tumbles. In order to clear the toe while walking, the child may develop a variety of ways to compensate, which then result in problems with his hip and or knee.   Treatments may include gait analysis, physical therapy, orthotics, serial casting, botulinum toxin and surgery. The goal of treatment is not to “cure” the condition, but to enable the child to achieve her maximum potential.

© 2017 CHASA. All Rights Reserved.

What has helped me?

I still have residual hemiplegia in terms of its impact on my life and it tends to start when I walk for long periods with associated movements etc. What has empowered me over the years is that same thing that would help someone who has acquired brain injury, a stroke etc which is called “brain gym”.

As an Infant & Teenager

• Walking in long fields, day-trips and other activities (with the family and school trips)
• Swimming in the local pools and streams (when I was younger)
• Cycling from an early age (first with stabilisers and moved on to independent cycling) 

As an Adult

• I continue to to walk from place to place promoting movement to the side which is impacted
• I continue to touch type promoting both sides of my body being used
• I continue to create art

Personality Types & Styles Of Learning

• Being idiosyncratic and solitary meant that I was empowered by trying to do do things in my own time, my own way  and with a small amount of people so I could get direction
• Being serious and mercurial meant that I was able to things with a level of focus and with element of free-will and boundary making and making it fun and light-hearted
• I have a kinesthetic style of learning with a mixture of solitary and social learning

Communication 

• Exposure Anxiety – Meant that being indirectly confrontational was the best way for me to feel included without the “watching, waiting, expecting” nature of direct contact setting or “retaliation and diversion” responses
• Aphasia/Language Processing and Visual Perceptional Issues – Breaking down communication into smaller chunks, using gesture, tone, inflection, objects of reference, one topic at a time and one context at a time

Conclusion

Through looking at the different pieces of one’s autism (or autisms) if hemiplegia is apart of the profile it may be worth thinking of different ways to empower the person, gaining confidence and trying out new activities without fear and/or anxiety about getting things wrong but focusing on the little steps as always communication, sensory integration, sensory perceptual, associated personality types and any other issues would have to be taken into account.

 

Paul Isaacs 2017

 

Autism, Alexithymia, Body Disconnection, Mental Health & Loss

 

Note – This is from a personal perspective

In short space of time two people dear to me had sadly passed away my Gramp Gilbert Harpwood and my friend Donna Williams (Polly Samuel).

I knew that because of alexithymia I would find this process lag and that I wouldn’t be “emotionally connected” straight away this led me to going day to day with no sort of emotional context at all despite showing on the surface seemingly “connective” emotions they were not connecting with me on the inside.

Alexithymia /ˌeɪlɛksəˈθaɪmiə/ is a personality construct characterized by the subclinical inability to identify and describe emotions in the self.^[1] The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment, and interpersonal relating.^[2

Expression Of Grief

After the month and half since my Gramp’s loss and not long after Polly’s I started getting pains in my arm, stabbing and throbbing like a vice was clamped on my left arm. I quickly ruled out tetanus (which is serious bacterial infection) this then progressed into neuropathic – like  pain which was shooting from my neck, jaw, arms, legs, feet and groin “settling” in places for minutes and hours with a “warm”, “tingling” feeling as it moved.

I know this based on having a family history of mood, compulsive and anxiety disorders many things came into place as well as somatisation disorder which is a pseudo pain diversion.

Anxiety and Somatic Disorder

Somatic symptom disorder occurs when a person feels extreme anxiety about physical symptoms such as pain or fatigue. The person has intense thoughts, feelings, and behaviors related to the symptoms that interfere with daily life.

Anxiety Neuropathic-like Symptoms

Anxiety doesn’t actually create peripheral neuropathy. While anxiety and stress have been thrown around as possible issues that lead to neuropathy, peripheral neuropathy is about nerve damage, not nerve symptoms, and since anxiety is unlikely to cause nerve damage, it can’t technically be peripheral neuropathy.

Dermatillomania (skin picking disorder)

Dermatillomania may be a reflection of a mental health problem. Psychological and behavioural theories suggest that skin picking may be a way of relieving stress or anxiety.

A Dolly Mixture Of Mental Health Conditions

I  know that I have mixture of differing overlapping co-conditions going with my mood disorder being an understandable and normal reaction to grief, skin picking and impulse control disorder which has resulted in my hair being riddled with scabs which is my sub-concious at work, to having excess adrenaline  that is being “stuck” in my body from time to time.

Externalising To Process My Own Emotional States

The alexithymia and associated problems that go with such as body disconnectivty (body agnosias and hemiplegia)  leaving me detached from my own emotional states leaves me also waiting for the emotions to come at a frantic, unprocessed rate leaving me to pick up the pieces of the jigsaw puzzle. I have created my own strategies such as writing, poetry and art which help me externalise and thus connect with my own emotional states, thoughts and feelings.

Visual Perceptual Disorders and Mentalising

Another aspect is the visual perceptual disorders which includes simultagnosia (object blindness) assoicated with prosopagnosia (face blindness) and semantic agnosia (meaning blindness) which I have that means my memory isn’t “visual-assoicative ” and I have no “pictures” of “emotional association” so my “meta-reality” (which all people have) has to be externalised.

Remembering

I know that with the slow realisation of my internal states will aid me in the this journey which is a normal journey for human beings, remembering people fondly, the good times, the laughs, the smiles and interactions.

Paul Isaacs 2017