Autism & Identity – Is It Helpful? & Is It Helping?

Note – This is from a personal and professional perspective of autism politics, identity and ideas on ways forward

Personal Perceptions on Diagnosis, Trajectory & Birthing Factors

When I was diagnosed in 2010 it gave an explanation of interconnected and identified conditions that happen to be “autistic” because of the stacking of them and the presentation.

So what are they? Well let’s start from the beginning I was born a month premature (this is linked to neurological underdevelopment, speech, language and motor coordination delays), brain injury due to placental abruption (cerebral hypoxia which probably caused a variety of agnosias and sensory perceptual challenges – simultagnosia, form agnosia, semantic agnosia, aphasia and hemiplegia), caesarean section (oxytocin depletion, sensory perception, autoimmune and hormonal imbalances).

Personhood, Humanity & Self Acceptance

So what I am challenging here? That there is not “one road to rome” in terms of presentation or trajectory because it’s multifaceted, layered, nuanced and three dimensional. Relating to someone is more than simply sharing experiences, it’s about meaningful connections.

The next aspect is “identity” all above are not an issue of identity nor a choice it happened. All mitigating factors were out of my control. My issue here how this word is used currently.

My personhood regardless is what I value first – that I want to be seen as a human being, with wants, needs and preferences. I see myself as part of the human race.

Autism, Personality Types & “Autistic Personalities”

Being solitary, mercurial, idiosyncratic, self – sacrificing and serious in terms of personality types, temperament and preferences isn’t “autism” (although being solitary/idiosyncratic/conscientious/sensitive may appear more “autistic” but the guts aren’t).

Having OCD, exposure anxiety and dissociation isn’t autism, having been diagnosed with personality disorders, psychosis and auditory hallucinations (due to a nervous breakdown in 2007) isn’t autism and having PTSD (due to sexual abuse) isn’t autism.

The Lense Of Acknowledgment Not Self – Pity

I would also like to point out that none of these things make me feel like a victim or proclaim victimhood, objectively these mental health conditions are from genetics and impacted and amplified by certain life experiences, but in the end it is my responsibility to take accountability for them.

I would say for newcomers it’s completely understandable how these things look interchangeable, however what I have noticed is people sharing information that is inaccurate then creates a ripple effect.

Autism Politics – Does It Temper Public & Internal Perceptions?

This is why I don’t like that autism politics is not about making change, it’s about in-fighting, narcissistic supply and being the next person on the trend band wagon.

Let’s be real, be objective, look at people’s own reality and value a person’s sense of being and humanity – Militancy from the culturist and curist modalities aren’t helpful they reduce autism to its respective parts through the lens of the extreme.

This is why I am moderate I like and see people, appreciate healthy debate and disagreement and look at the challenges as they are rather than what they are not.

Acknowledging that group think and confirmation bias exists in this axis is something for newcomers to be aware of.

Political Correctness In 3 Different Autism Worlds – By Donna Williams.

Looking At Objectivity & Realism

However, these experiences have tempered my presentation over the years. This is of course my reality not a representation of everyone’s because it’s an impossible task to undertake and unattainable. People may need to think of “autisms” in the plural.

That is why I feel like defining your whole “being” by one word is reductive, collectivist and naive, autism is something neither to be demonised, nor glamorised, so healthy discourse would suggest that we meet people were they are, be person-centered and see autism as the late Donna Williams’ (Polly Samuel) would a describe it as a “fruit salad”.

Paul Isaacs 2024

An Autistic Journey Through PTSD & Sexual Abuse

Note – This is from a personal perspective, themes, content and experiences are related to my own journey, pathway, developmental trajectory and presentation.

Trust, Opening Up & Building A Picture

This year I had concluded my counselling sessions for PTSD in which was unpacking, re-evaluating an incident of rape which occurred when I was in my mid-teens and at school – fragments of these memories (through night terrors) came about in as early as 2009 and in 2013 and later urged me to go through the mental health services in which the incident was palmed off as exclusively as “dream/nightmare” and thus was not based in reality. This form of invalidation weighed heavy on me for many years after.

Trust is the backbone of any open conversion and in this context, it was absolutely crucial that I was able to be seen firstly as a human being and secondly that this wasn’t a facet of my imagination gone array, I have always been punctual and pragmatic when it came to the truth and this was no exception. The counsellor considered my information processing challenges – alexithymia, visual fragmentation, simultagnosia, semantic agnosia, language processing and body disconnectivity.

The next aspect was the way in which I mentalised information which was through tactile association primarily and the dissociation (this is something that I had been doing since later infancy and through guise of characters) that had built up creating a “block” on some of the crucial pieces of information and over the coming weeks I could expand upon not only the incident itself before and afterwards with a level of clarity and diction that I wasn’t expecting, I can remember my body shaking and I thought I was coming down with the flu as sweat was persistent and I clearly stated that I forgave him, I wanted to humanise this individual, give him a level of understanding and even empathy for someone to do such an act they must be unbalanced, unhappy and have distorted sense of what consent or even the act of sex is.

Threads Weave Differently?

I have no doubt that this had an impact on development, attachment and personality types and mental health (being diagnosed with two personality disorders, psychosis and auditory hallucinations in 2007 and how heavily these events contributed) from here on in and other aspects of my life, the discomfort of being around men for long periods and a strong dislike for being touched by them, a conflicted view of me being a sexual being (or the potential to be one) this included and extended shame around masturbation (prematurity meant I was later developing sexually) and a persistent nervous system responses after orgasm in which I would have to bathe usually after persistent crying, tears and snot, a persistent need to check my anus and recreate the act and confusion around my sexuality and gender. This gave me me the answers to those questions.

Conclusion & Moving Forward?

Projection is powerful and dignity can be lost in s many ways so what and how can I move forward? The first aspect was processing the whole event before, during and after, the next was being objective about the person in question because I have forgiven them, the next is being at peace with where I am now, people wonder why I have dislike for defining a person by one word? Well maybe this blog post is the reason why – I refuse to be defined by an single generic experience, I want to understand it but not wallow in it, I want to process it, but not over-indulge, I want to find lessons and thus reclaim my humanity.

I haven’t missed out and I am not a victim but have been victimised a clear difference in how I want to be autonomous about this re-evaluation. I wasn’t responsible for this type of abuse, but I am responsible for how I navigate it.

Paul Isaacs 2023

Be The Change Autism Acceptance Training With Sharon & Rosie King

Be The Change Training Information

Mother and daughter training team Sharon and Rosie King are offering in-house training sessions to organisations who seek to build knowledge and employ strategies to protect, retain and include staff and clients who are on the autism spectrum.

This single day training session is designed to help companies to support, encourage and benefit from neurodivergent employees. The understanding and ethos that underpins this course will help to build a safe, empathetic and healthy environment for all people in your workplace.

Contact Information & Booking Enquiries

bethechangeautismtraining@yahoo.com

Paul Isaacs 2023

The Multifaceted Nature Of Autism, Individualism & Being Person Centered Approaches

I got a really interesting question from one of my presentations this morning.

“Hi Paul thanks for that, that was brilliant. I just remembered a question just now. Are there any specific coping strategies for someone struggling with Autism rather than getting medicated? Cheers”

We need to break this down into its respective parts of what aspects someone’s autism could be part of the struggling and or challenges.

Common Information Processing Challenges

• Aphasia, Semantic Pragmatic Disorder, Verbal Agnosia and challenges with receptive and/or expressive language, word finding, sentence construction, syntax.

• Visual Perceptual Disorders that range from faceblindness, visual fragmentation, semantic agnosia, visual – associative agnosia and struggling with visual meaning/association, internal mentalising, attention switching, mono-tracked social style (all self/no other or all other/no self), living in the system of sensing (mergence with objects and people’s energies).

• Social Emotional Agnosia and being disconnected from the social -emotional worlds (despite wanting to be a part of things) but having an overly logical/literal way of processing may cause struggles with interaction.

• Alexithymia not having or reading internalised sensations of bodily signals, delayed processing of one’s own emotions, emotional overwhelm/dysregulation, stored responses/phrases (also can related to exposure anxiety/language processing challenges/echolalia).

• Body Disconnection not having the signals to perceive pain or parts of their own body in relation to its other parts and/or its surroundings (pain agnosia/visual spatial dysgnosia), maybe more prone to self -harm, dressing, toileting, bathing and other forms of self-care.

• Apraxia and not having control of your body and/or speech organs leading to people presuming incompetence/lack of cognition it’s important to note that this presentation is to do with the movement of body and can include the speech organs (mouth, jaw, tongue etc) however people may well have aphasia. verbal agnosia stored pattern, theme and feel responses (that relate to distinct associations).

Then we have to look at other aspects that may need medication input bearing in mind I am not a practitioner in this area and one must be mindful of the individualism and the reasons why people go down this route.

Mental Health Conditions & Overlap

For some it could be the management of seizure disorders, for others it could be to do with mood (depression, unipolar depression, bipolar) /anxiety disorders (generalised anxiety, social phobia, obsessive compulsive disorder), for others it could be the management of more complex conditions such as psychosis, schizophrenia and/or personality disorders for example.

Autism & Impacted Health Systems

Then we have to look at potential health complications within autism such as gut, autoimmune, metabolic and collagen disorders which would need to be looked into personal centred way and be empathic with the potential restrictions, pain and other impacts that this has.

Ego-Dystonic Reactions & Distress?

Another aspect is if someone may see parts of their autism and/or other conditions as going “with self” ego-syntonic or “against self” ego-dystonic which may cause great internal conflict, fear, resentment and/or frustration.

Personality Types, Temperament & Beyond

Other things to take into account are personality types (schizoid, schizotypal, avoidant, obsessive-compulsive and dependant are common) how that impacts one’s outlook, temperament, self-evaluation, self-image and attachment with other people so it’s always best to take an holistic, rounded and three dimensional approach to this area of personal centred support.

Conclusion

This includes being mindful of one’s own skillset, gaps in knowledge and then can build up specific, individualised strategies with the person’s wellbeing and autonomy being healthily recognised.

Paul Isaacs 2023

A Parent Asks How I Gained Functional Speech? This Is My Answer

Information Processing & Its Impact On Language Development

Sure, breaking it down in my infancy I was about 80 % meaning deaf (aphasia), meaning blind (semantic agnosia), object blind (simultagnosia) and by extension faceblind and context blind, this meant that interpretative was difficult to access, filter the use.

So, feedback was fragmented which is distorted visual perception, which then had an impact on incoming meaning and thus bridging contextual association with language. So the physical world had to be accessed through being tactile and other sensory compensatory modulations.

For me it was phonics that had rhythm, pitch and intonation this feedback was generated islets of meaning and expression using mouth sounds and my body evoke and speak out to outside world.

Echolalia was used as the fallout of a language processing disorder in which pieces of movies, VHS’ were used in a “pattern, theme and feel” way as opposed to its generalised use, it was idiosyncratic, egocentric but also was internally driven but not always on a conscious largely due to body agnosias, aphantasia (lack of visual mentalising) this secondary to oral apraxia and hemiplegia which impacted on my speech organs.

Wading Through Tar Bridging The Sensing & Interpretive World

Functional speech and language were slow, laboured and like wading through tar as I was switching from “my language” to “interpretation based” language, being mono-tracked, having exposure anxiety, selective mutism, not able to get the shared sense of social, simultagnosia and alexithymia all played their distinctive and individual parts in my language development.

My Language Now

As an adult and how I present know means that if processing and access becomes difficult my language becomes, stilted, telegraphic, slowed akin to someone becoming tongue tied or having anomia, echolalia can still happen from time to time in the context of the information processing challenges above or when any emotion is evoked and I occasionally will strike myself when feedback is incoming but not meaningfully accessible.

I hope this explains my language processing reality and trajectory from a personal perspective.

Paul Isaacs 2023

An Autistic Burnout Will Have its On Medley Of “Fruit Salads”

• 

Yes, I can relate and this my experience from a personal perspective

Flat mood usually to do with alexithymia, recognising my own internal systems & unipolar depression.

Low Attention Span is related to executive functioning, mapping tasks, mentalising (visual – verbal agnosias), language processing secondary to dissociation.

Making Commitments are to do with a mixture of factors information processing and the ability to take incoming information. (visual fragmentation, language tumbling, body fragmentation, mono-processing).

Irritability is usually related to emotional regulation, OCD (obsessive compulsive disorder) & EA (exposure anxiety).

Overwhelmed/Underwhelmed is something that comes later not at the time body agnosias/body disconnection

Lack Of Interest may be secondary because of unipolar depression

Low Capacity For Socialising can be many factors inability to do the shared sense of social (self and other), personality types that I have are more “autistic” in presentation (solitary & idiosyncratic) and exposure anxiety.

Anxiety EA and OCD are the most prevalent.

Now some of these things aren’t always “the autism” the information processing challenges for me are visual agnosias (simultagnosia, semantic agnosias), form agnosia, language processing (aphasia), body agnosias, topographic agnosia and alexithymia.

However other aspects are related to mood, mental health and personality types/sensitivities.

Yes some of the information processing challenges such as “shutdowns” can be misinterpreted as depression.

Maybe we have to unpack what a “shutdown/burn out” is for the person?

Could it be language processing (verbal auditory agnosia/aphasias), visual perception, auditory perception, body agnosias, dyspraxias, apraxias, sensory sensitivities, dietary disabilities, gut/immune/metabolic disorders impacting on information processing, ehlers danlos syndrome and tissue connection etc.

Then we need to look at the mental health conditions, mood, depression, bipolar, anxiety, OCD, exposure anxiety, social phobia, dissociation, impulse control, psychosis and attachment variables for example.

Then looking at personality types and their sensitivities – more “autistically looking” ones are solitary, idiosyncratic, conscientious and avoidant and many others .

Paul Isaacs 2023

Blood Tests, Oliver Sachs & A Accommodating Nurse

Note – This is from a personal perspective and of medical practices

I had a blood test done today at the surgery The last one was in 2019.

The nurse was so friendly and accommodating we spoke about such varied topics as blood was being extracted I mentioned my Father having chronic lymphocytic leukaemia and P53 gene deletion.

We then spoke about birthing and she told me she was a premature baby, had cerebral palsy and how her parents supported her in the 1960’s by taking her to nursery early aiding her in language processing.

She said about her friend’s daughter who has Mosaic Down’s Syndrome and was currently at college looking to work in social care she also plays the flute.

I then said my birth was too premature, cerebral hypoxia, visual perception (simultagnosia, faceblindness), tinted lenses and language processing challenges. She then spoke about studying neurology and reading the books of neurologist and author Oliver Sachs.

She studied neurology as part of her nurses training so words like “agnosia”, “aphasia”, “savant” etc were free flowing.

She spoke about her nephew now in his 40’s having Tourette syndrome and how they were accommodating to him, he is currently an electrician, noting that she read the word “Tourette’s” from Sachs’ book. I said about my friend Rosie King ‘s experiences and the man himself accrediting her TedEx talk prior to his passing.

Donna & Temple Grandin were mentioned as Sachs’ saw Polly in the mid-nineties to talk about visual agnosias while Grandin was interviewed years prior and was in a chapter of the Anthropologist from Mars.

It was humbling to meet a person in this context who saw as such – that flows nicely into my workings as an autism speaker, training and consultant and of course “real-life” we can agree, disagree but still value human beings

Caring for people is allowing them to go on their own journey, find their own joys, interventions, happiness and clarity – I like to observe but that doesn’t mean I am reserving judgment but accommodation of understanding and different perspectives.

Prior to meeting the nurse I aided a distressed lady looking for the local community hospital, after a brief chat she hugged me as I pointed to the main reception sometimes it’s the small socially binding things that make me appreciate life.

Paul Isaacs 2023

When “It’s The Autism” Is Not Good Enough?

Note – This is from a personal perspective

The Scope Is Much Bigger

When we look at autism in a collective sense, that one strategy will aid all, when one notion of what is (in a reductive sense) and that this must be the only experience.

The truth is that autism is individual to the person in question and that means one must look much deeper, introspectively and maybe with a dash of creativity to conclude the multi-faceted realities.

Personal Types & It’s How It Moulds People

So, let’s look at early development, family, caregivers and adjustment (or lack thereof) this tempers personality – now I am solitary a people watcher and asocial, idiosyncratic – creative and like original thinking, mercurial – like delving into different experiences and realities, self- sacrificing – I like to aid and support people in need and serious and have been a self-asserting, pragmatic and realistic.

Human beings are moulded by their parents and/or caregivers it moulds people’s ideas of the world, what is “right and wrong” and ultimately, connections, friendships, relationships and sexualities.

Information Processing & Its Realities

Now from an information processing perspective I am meaning deaf (aphasia), meaning blind, object blind, faceblind (visual agnosias), body disconnection and pain dead (alexithymia and body agnosias) and this meant that I lived in a world of pattern, theme and feel so everything was narrowed, compartmentalised to an associated sense.

For example, my Father was “face” because I felt his face, brows, eyelids, lips and cheeks, for my Mother it was “hair” and was dry, curly and long. I try to connect tactile – kinaesthetic to merge and bond.

With my friend Rosie King she allowed me to sculpt her face so I remember by her eyebrows and her ears which were delicate, ornate and akin to little seashells.

I only do this only with people I trust and connect with as boundaries are important.

My language was about how words feel and they were formed by pitch, rhyme, rhythm and were associated with echolalia. I didn’t gain functional language until later infancy other factors such as oral apraxia, exposure anxiety, selective mutism and anomia (word finding) compounding this.

Conclusion

I am not primarily literal or logical but it’s the amount of words that I can string together and how long I can retain the shared sense of social.

So, this is my “system” it’s not the system nor should it be because the diversity is seen beyond the above, looking at the pieces but not “pathologising” and seeing interlinking mechanisms.

But not overly defining by “the condition”, looking at one’s personhood and creating meaningful and socially binding experiences.

Paul Isaacs 2023

Booking Autism Consultancy Sessions

Paul Isaacs is offering free support sessions.

This will be available Thursdays and Fridays only between 9am and 5pm.

(sessions may have to be changed due to other commitments)

Please select the date and times available for you to book your 45 min session.

Paul Isaacs is is offering free support sessions, which fall under the following three main topics:

1. Breaking down information processing challenges.

2. Practical support for autistic adults.

3. Practical support for parents.

Please book your 45 min session.

Paul Isaacs 2023

The SJ Childs Show Podcast

Autism Podcast Series Episode 179

UK Advocate, Speaker, Trainer, Consultant, Blogger, Author and Ambassador Paul Isaacs

In this episode, I have the pleasure of speaking with Paul Isaacs an Ambassador for Anna Kennedy from the UK.

He has an active blog I follow on Facebook and we finally had the chance to sit down and hear his story. Inspiring and filled with his view from the Autism Spectrum 

Click on the link to listen

Paul Isaacs 2023