Paul Isaacs' Blog

Autism from the inside


Leave a comment

The Lessons I Learned Through Being Bullied

Lessons I have learnt through the years are plundered with and deep with seemingly no end.

Narrowing them down is quite easy as you garner what is the most prominent and impactful.

Being Thankful & Objective

Being thankful starts with my earliest treads and saunter movements through my village at a young age, the trees, the smells, the wildlife and rolling fields. In infancy I was meaning blind, object blind, context blind, pain dead and body disconnected – I experienced the world through my body.

Thanking Their Actions

I was bullied in my neighbourhood in early infancy, I was functionally non-verbal and echolalic, thanking them is necessary they taught me the foundations of misunderstanding, fear and intolerance.

Understanding People’s Motivations

They are also human beings and anger is not a feeling that shrouds me. They have hopefully reflected, moved on and made pastures of meaningful living. I can only wish them well in these ventures.

I didn’t expect them to understand nor would they, because befriending me out of obligation rather than true connection would have been futile.

Projection Of Inner Challenges?

I was kicked, punched, spat at, pushed, and had verbal insults thrown my way as well as being forcefully locked in a makeshift cage for over an hour. Think of the unhappy and saddened minds that would do this? I cannot help reflecting on how much they potentially needed kindly support themselves.

But why be thankful for such events? Because these were my tempered experiences they built.

Foundations and I had to slowly make sense of wishful, seeking alternative realities weren’t an option.

My resilience was unconsciously built through movement, language, and the system of sensing in which the merged frequencies of people, objects, and my external environment.

Conclusion

This included the twinkling of water, the carpet fabric, blades of grass, barks of trees, the smearing of shaving foam and bubble bath liquid on the bathroom tiles, the fragmented stranger in the mirror for over ten years and the observation of fragmented phonic laden beings.

I wouldn’t change these events, nor do I resent through the illusions of solace, I lived a human life and that is fine.

Paul Isaacs 2022


Leave a comment

Not Changing The Past But Your Perception Of It

I was speaking at Thomley Families about my life last month, It’s not a difficult subject to broach as I have been talking about in the context of autism for well over a decade.

If I had been diagnosed with autism in early infancy it would have been of “classic” or “severe” autism.

I was functionally non- verbal, due to oral apraxia and aphasia, meaning deaf, meaning blind and object blind due to visual agnosias, pain dead, body disconnected due to hemiplegia and body agnosias and retained the system of sensing before the interpretation and associated frameworks of the external world.

However, I was a happy child despite the challenges, the bullying in education, the village in which I lived and through the many years of employment.

I would not have changed a thing because such is life, the sink or swim process taught me resilience and autonomy, my parents not seeing my whole personhood as “the condition” meant failure was normal, co-dependency was not on the cards and accountability was a necessary skill.

I wasn’t pandered so I was allowed to live, breathe and experience life.

Being thankful is healthy taking acknowledgment of your life and seeing experiences as learned lessons for the pastures of the future. I live a human life which is balanced.

Resentment causes bitterness and a narled sense of “otherness” It’s saddened that people think this way.

Much of how I look and my neurological makeup was and is out of my control.

Autism just “is” demonisation and glamourisation don’t tell an authentic tale just a projection of what people want to hear.

I wonder what the little person below is thinking? Or maybe he is just being and that was enough for him.

Paul Isaacs 2022


Leave a comment

Autism & Anxiety? What Are The Correlations?

Often people may ask what is anxiety? People have different thresholds, strategies, internal somatic experiences, and interpretations of what words mean to them.

Some when breaking down the different types of anxiety we can explore the different potential experiences that are going on.

Social Phobia/Social Anxiety Disorder – in which a person may be avoidant of social activities and/or deeply analyse their perceived faults.

Obsessive Compulsive Disorder – in which a person repeats actions (movements, songs, checking) to “feel safe” this experience is usually temporary and short term.

Exposure Anxiety – in which person’s nervous system is triggered by awareness of self that leads to compulsive reactive retaliation responses.

Analysis Paralysis – in which a person may overthink multiple strands of information and not come to a decision and/or look at too many variables.

Phobias – in which a person through core beliefs, early childhood associated trauma, perception and associated patterns has specific conscious and/or unconscious phobias secondary to anxiety and other mental health conditions.

Trauma – in which the from context of autism sensory integration, sensory perception, social perception, alexithymia, language processing and other information processing challenges that are secondary to a person’s environment cause a negative pattern of nervous system responses.

Conclusion

So, when we look at autism and anxiety, we must take time understand what type of anxiety is present, what triggers the person’s nervous system and taking into account their information processing, language processing, mentalising and learning styles when supplying information to them.

Paul Isaacs 2022


Leave a comment

Autism? I Am Neither Proud Of Have Shame – What I Aim For Is Balance

When I was diagnosed in 2010, my parents wisely said to me that I am still “Paul” (whatever that entailed at that point in time).

Not everything about someone is “Autistic” and I am no exception to this rule in the wider scheme of things.

I respectfully do not see autism as identity because that is something that has consciously created, made and I feel we must be more lateral about what autism means for people beyond our own experiences.

Personality types that are within me that could present more AUT-istic are the fact that I am solitary, serious and idiosyncratic however people internally are not straight lines as I am mercurial and self-sacrificing.

Extend this to educational systems, employment services hospitals and beyond what are people trying to say about autism? If we share objectivity then maybe fertile ground can be sown for other experiences too.

As an infant I was functionally non-verbal, I was meaning deaf, blind, context blind, body disconnected, pain dead and lived primarily in the system of sensing. What I valued was that my parents saw me as a person first regardless and that has stayed with me well into adulthood.

I value my personhood it keeps me grounded, objective and sane in many ways. I am made up of many things autism is a part of the mix not the centre of because no one person in the world is one word.

Paul Isaacs 2022


Leave a comment

Reflective Notions Of Autism & Balanced Narratives For The Future

It’s now the end of autism awareness/acceptance month and I think people do misunderstand my position on this.

Autism & Politics – An Odd Connection

The politics of autism are dicey and that to me is part of the incoming challenges everybody is coming from the angle of their own perspective, internal lens and experiences.

Let’s Look At Healthy, Person Centered Realities

I do not seek cures nor do I see people on the spectrum as “broken” nor do I see autism as inherently a culture.

I think this diverts from the very real issues that are happening on a community based level. I see people as such, three dimensional, patchwork quilts who deserve at the very foundation a chance to be understood and make meaningful connections in their lives.

To be allowed to explore the notions of competence and humanness if we over or underinvest in labels we miss so much, see failure as a friend a companion that will aid you to the path that suits and works.

Being Balanced Isn’t Threatening

I will listen to people even at the extreme ends of the narrative (to gauge their internal reasoning) because even they need their perspectives to be accounted for. I am not the centre piece it’s beyond specific people.

Why I Advocate – Broader Experiences

I advocate and I inform about language processing, visual perception, information processing, exposure anxiety and the fruit salad analogy. Why? To bridge gaps of different experiences, to offer an expansion of the different “systems” within autism, to give people the space, time, autonomy and self ownership to know their autism and empower others.

Conclusion On Personhood

To see that people are people and their personhood should be cherished as much as the challenges faced.

We have as human beings more in common than we times care to wish. I am all for authentic individualism.

Paul Isaacs 2022


Leave a comment

Autism – When It Isn’t Just Neurological?

No (for some) with a high prevalence between 40 – 60 percent have either gut, immune and autoimmune disorders as opposed to people with AS who are less likely to have the challenges above – this can and does have an impact.

Vitamin D & Autism

Function

For example vitamin D (and other vitamin malabsorptions) which can cause secondary effects that can be disabling in their own right. Vitamin D is a neuro steroid which impacts on these areas

Some major known biological functions of neurosteroids include modulation of neural plasticity,[26] learning and memory processes,[27] behavior,[28][29] and seizure susceptibility,[30] as well as responses to stress, anxiety, and depression.[11][31] Neurosteroids also appear to play an important role in various sexually-dimorphic behaviors and emotional responses.[29].

Vitamin B12 & Autism

Function

Vitamin B12 aids with digestion and when malabsorption is present it can cause s vast array of neuro, psychological and psych- social symptoms.

Vitamin B12 was discovered as a result of pernicious anemia, an autoimmune disorder in which the blood has a lower than normal number of red blood cells, due to a deficiency in vitamin B12.[5][13] The ability to absorb the vitamin declines with age, especially in people over 60 years old.

Many cases of ‘severely’ autistic child I’ve seen as a consultant didn’t involve B12 deficiencies. Excess Salicylate levels, kids eating fluoride toothpaste and stripping out their gut lining, extreme learned helplessness and Dependent Personality Disorder in families who were co-dependent with it, visual/verbal/body agnosias associated with brain injury or dyspraxia which required brain gym and adaptations, kids with undiagnosed immune deficiencies whose brains weren’t firing on all cylinders but didn’t have B12 deficiency…. you get the picture. So stop grabbing one-size-fits-all autism ‘cures’ like maniacs in the last days of a department store sale. Get sensible and think holistically. Kids are not one size fits all. Nor is autism. Nor are autistic kids.

Donna Williams

Salicylate Sensitivity & Autism

Function

Salicylic acid modulates COX-1 enzymatic activity to decrease the formation of pro-inflammatory prostaglandins. Salicylate may competitively inhibit prostaglandin formation. Salicylate’s antirheumatic (nonsteroidal anti-inflammatory) actions are a result of its analgesic and anti-inflammatory mechanisms.

Hives, joint problems, headaches and attention/information processing issues were part of my childhood. I was diagnosed with juvenile arthritis around age 9-11 and put on painkillers until I was 17 and had few white cells. I had had immune problems all my life and was used to infections running in succession, lasting months and not responding well to antibiotics. By 17 I had regular migraines and was on asthma sprays and thrush became my constant companion. By age 26 I had multiple simultaneous infections (respiratory tract, bladder, eye infections), chronic thrush, severe fatigue, and episodes of numbness, vein problems and swelling in my hands, very dark circles under my eyes and what would later be diagnosed as ‘severe reactive hypoglycemia’. It was 1989 and when I was asked if I’d ever been tested for allergies, I was surprised such a thing could cause such ill health. I was referred to an allergy clinic.

The allergy clinic was run by qualified medical doctors. They injected me with a small amount of salicylate then measured the size of the histamine associated reaction. They had a scale of measurement for these bumps which went up to a score of 22. My score for salicylate allergy was 22. Ah, so that’s why aspirin swelled up my hands, feet, face and neck with edema!. I went home with a diet that was gluten free, casein free, no soy, low phenol, low salicylate and no refined carbs. I had no family support, no counselor. The withdrawal was horrendous. I made it and within 7-10 days I was becoming markedly better on all fronts. I remained relatively loyal to my low salicylate life for 21 years until I was 47 years old.

Donna Williams

Autism & P53 Gene Deletion

Function

A gene that makes a protein that is found inside the nucleus of cells and plays a key role in controlling cell division and cell death.

Deletions in mtDNA and altered p53 gene copy ratios appear to result mainly from genetics, particularly in children with more severe autism,” Giulivi said,” whereas the gene x environment interaction seems to play a greater role in children with autism with less severe symptoms.”

M Father has a P53 gene deletion, CLL (chronic lymphocytic leukaemia) and a diagnosis of AS it was through blood tests that they found out and had to go into a treatment of steroids and a blood transplant.

This would suggest that if the rhetoric is that autism is just – then you miss other realities that may not fit the cookie cutter narrative be bold and understand that it isn’t a one size fits all. Knowledge is power.

Paul Isaacs 2022


Leave a comment

House Hunting and Moving Advice for Parents With Children on the Spectrum

Image from Unsplash

I’m a dad living in Philadelphia. I enjoy DIY projects almost as much as raising my two children. I’m also the co-creator of Fix It Dads, which offers tips for home improvement projects.  www.Fixitdads.com

As a parent, your primary priority will always be your child. Considering your little one can be challenging when planning a move, especially if your child is on the autism spectrum. There will be house features to look out for and home modifications to make. In addition, when forced to confront change, children with Autism Spectrum Disorder (ASD) often experience extreme anxiety and stress. This can be harrowing to watch as a parent.

However, the payoff for the hard work is well worth the effort. Seeing your child flourishing, joyous, and well-adjusted in their new environment will be highly fulfilling. Whether you’re house-hunting for financial reasons, a job, or wish for a better life elsewhere, moving may just be the ticket to happiness for you and your family. And with a bit of advice from Paul Isaacs’ Blog, you’ll be good to go for a smooth and efficient move.

Keep Your Little One in the Loop

The key to a successful move is to include your child in the decision-making process. According to the Raising Children Network, kids with ASD don’t deal well with change, so it is vital to help them feel secure. Try to let them know about the move as early as possible, so they have the time and space to process the information. Spectrum News reports that kids with ASD typically need a month or more to prepare for a significant life change.

Another critical tip is to paint a vivid picture of their new environment. Tell your kid about their new room, the house, and the kind of school they’ll be going to. Get them excited about features like a pool in the backyard or a great park nearby. Don’t forget to mention anchor features that they value in your current home, such as toys or furniture.

Look For the Perfect Autism-Friendly Home

You will need to find a home that is ideally located to suit your child’s needs. Look for neighborhoods with easy access to good schools, medical facilities, and therapy centers. Once you’ve narrowed down the right location, you’ll have to do some research on median prices. It can be tricky to find a home that is both autism-friendly and affordable. However, remember that details that bother those with ASD are typically easily fixed. For example, painting and lighting are easily changed up for a budget-friendly solution.

In addition to features and home prices, you’ll need to consider annual income, monthly expenses, and the down payment cost. During this time, you may want to consider whether purchasing an “as-is” home is the right choice. In addition to saving you money, purchasing an “as-is” home can allow you to tailor the space to your child’s specific needs. However, if you decide to take this route, make sure that the home’s current state doesn’t pose any risk to your family’s overall well-being.

Fixing Up Your New Home

It’s going to be challenging to find a house that is fitted out with your specifications and meets your budget requirements! You’ll likely need to make a few modifications to ensure that your house feels safe for your loved one. For example, you will have to ensure you’re accommodating your child’s sensory sensitivity. Echoey rooms and unclean spaces are big triggers, so be sure to get some furniture in and deep-clean the home before moving in. Soundproofing, rounded countertops, and quiet appliances are some other features that will be valuable for your child on the spectrum.

Also, take the time to set up smart cameras, safety locks, and smoke alarms, so the house is move-in ready. Set up open concept plans to ensure circulation, as this is important for people on the spectrum. A bigger backyard is also a great way to ensure your child thrives — this will improve their strength, processing, and attention span and give them exposure to the outdoors. House hunting and moving can have some unique challenges when you’re the parent of a child with ASD. However, get comfortable with the difficulties and take it in your stride. Plan ahead for an efficient move, and remember to comfort your child on moving day. The more you involve your child, the better they will adjust to the upcoming changes

Post by Rob Woods

Blogged by Paul Isaacs 2022


1 Comment

An Alternate View Of Autism & Personhood First Language

Note – This is from a personal perspective of my autism profile, identity and ethos

I have never seen the day of was diagnosed as “autism” being all of “me” and since then I have come to understand why. The day I was diagnosed my parents were present through the process and on the way back to the car my Mum said to me you are still “Paul”.

Autistic Identity Vs. Human Selfhood

She was right in so many ways and that is why I didn’t fall down the hole of the “autistic identity” phenomena with all its trappings of rhetoric (idolisation and recycled stereotypes), confirmation bias (lacking objective reasoning), group think (cliques and separatism) which regardless of intent cause confusion and sometimes overriding opinion over factual information sharing.

Information Processing Challenges Aren’t Unique To Autism

Understanding my own personal information processing challenges took time firstly what the are and where they came from. I had brain injury at birth and no information processing challenge in its own right is “autism” not one what what makes and aut-is-tic presentation is if you have many – for me it was being faceblind, object blind, meaning blind as an extension of visual perceptual challenges, body agnosic, hemiplegia and pain agnosia as an extension of body disconnectivity, language processing challenges which meant I was meaning deaf, didn’t get a shared sense of social until later in adulthood and I was tactile kinesthetic in my style of learning, context, bonding and mentalising.

Mental Health Conditions Aren’t “The Autism”

My mental health co-conditions are not the autism (but can and did temper surface presentation at the time) they do however come along for the ride such as mood disorders in mid infancy infancy, dissociation due being meaning deaf in later infancy, obsessive compulsive disorder by my early teens and exposure anxiety which came about prior to gaining functional speech between the ages 7/8 years old.

Autism, Personality Types, Disordered Extremes & Its Broader Context

When it came to my early adulthood I was diagnosed with borderline and schziotypal personality disorders these were in my case not a misdiagnosis (this also included auditory hallucinations and psychosis). So what can we learn from this in the broader context? That people on the autism spectrum have personalities too and the traits like all other human beings the common being devoted/dependant. conscientious/obsessive compulsive, idiosyncratic/schziotypal, solitary/schizoid. This suggests to me that non-autistic folk can also present as “autistic” because they could have “autistic presented” personality types with certain attachment styles and sensitives. This means that what people are again calling the autism is it that really accurate and in a broader sense helpful? I am solitary, mercurial, serious, self-sacrificing and idiosyncratic. I am also asexual and asocial.

I Am A Happy Human Being? Or Happy Being Human?

Now I can only speak from my own experiences and I can say that I am neither proud, ashamed or otherwise with regards to my diagnosis it just is – this doesn’t come from apathetic dismissal nor does it come from non acceptance. I see myself as a person first not because of shame but because all people are patchwork quilted, layered, multi-faceted – autism is part of who I am not the centre nor is its bulking up my selfhood.

I am happy being a human not a lot people get that chance.

Paul Isaacs 2022


Leave a comment

Polly – A Life Beyond Labels

Donna Williams (Polly Samuel) was a remarkable, empathic and humble person that I have had the fortune to know, diagnosed with childhood psychosis in 1965 at age 2, a victim of poverty, trauma, physical and sexual abuse in her infancy and adulthood.

She lived with visual perceptual disorders, verbal agnosias, body agnosias, auto-immune challenges, elhers danlos syndrome and dissociative identity disorder.

In later life she was diagnosed with breast cancer and sadly passed away in 2017.

Her work has helped, aided and empowered many people over the years of her conferences, lectures and books both autobiographical and informational in content throughout the early days of autism advocacy.

Polly was highly intuitive, person centred and accommodating to people’s needs refusing to adhere to the “identity” politics (seeing autism as the centre of selfhood which respectfully isn’t) and the lack of objectivity within the extreme narratives, she challenged the use of the word “neurotypical” its use and the inaccuracies around the word and its inaccurate meaning.

Other work included the use of tinted lenses and how they aided with processing incoming information, visual perception, faceblindness, simultagnosia and semantic agnosia, language processing in which a person is meaning deaf and not literal, advocating for people whom are functionally non-verbal who use assisted communication, advocating for people who had exposure anxiety who find the directly confrontational world oppressive and challenging, advocating for people with dietary disabilities, metabolic, gut and immune disorders.

I first met Polly at an event in Headington (near the city of Oxford) in 2009 with my Father during the interval, I went up to her to ask how she created her artwork she then said after saying I am potentially on the autism spectrum she said “oh yes you are really sensitive and so is your Father.”

We connected on social media and she helped me greatly with understanding my autism profile, the politics of autism and helping me through challenging times when I felt no one was listening to be me.

Polly encouraged me to not fall into the trap of seeing “autism as everything about you” and warned me about the militancy and backlash I would get for not towing the line in the confirmation bias narratives.

Over the past five years since her passing I have tried my best to inform people of her “autism fruit salad analogy” in which you look at the different pieces specifically to the person and thus see the person first – merging the medical/social model of disability to create the empowerment model.

She had an infectious laugh and a zest for life and humanity and that is what I value from her is that she saw me (as others) as not simply “autistic” but human beings in their own right.

I loved her artwork and poetry it always seemed to speak a thousand words.

I miss you Polly I think I always will. x

Paul Isaacs 2022


Leave a comment

Militancy – Is That The Sad Way Forward For Neurodiversity?

Daemos & Idolos

I take the middle ground on because some of this is down to personal and/or professional preferences.

Autism politics is a great divider on the autism community.

I am neither a culturist nor a curist because they are two extremes which lack reflection and objectivity.

Getting Balance Between Two Polarising Extremes

They share one aspect they refuse to people on the spectrum as people one side “diseased” the other “sexy” (for very different reasons as people). This is truly saddening for me. Demonisation & idolisation at its most potent.

Autism & Selfhood

When I say person with autism I do not mean a literal appendage what I mean from an ethical point of view before labels (adjectives) are given to people we are born as human beings.

The next aspect is I see autism as apart of me because I am neither proud nor ashamed, here nor there it just “is” that is a personal standpoint and a choice.

It also means I am a human being no more, no less and living a human life. Surely that is the greatest gift?

Taking The Middle Path

Many roads.and different journeys I feel the first aspect of self acceptance is understanding you are a person and that is fine.


With regards to not being accepted I value it (it wouldn’t have been any different in my situation if I would have had a diagnosis or not) because the people who did had their own challenges, be it mental health, core beliefs, projection or otherwise we are all fallible.


So I thank them for it and the frameworks it has given and wish them well in their lives.
With regards to the autism community it’s just like any other it has its systems, politics, varying viewpoints, discord and harmony and I value people on their views of personhood regardless.


The premise of belonging is you first it starts with the interior and working on and unpicking perception of self and reality of connected self.


In other words be your own best friend first because it’s the flesh cage you reside in and you might as well make comfortable.


I am naturally solitary, idiosyncratic, self sacrificing and mercurial these are part of my patchwork quilt. I am asocial, asexual ,value friendship and a keen observer of folk.


Faceblindness and visual agnosias made me connect with that world kinesthetically, language processing (aphasias) made feel words beyond/before their interpretation, living in system of sensing makes me feel too much, alexithymia can make me feel like inner emotions are to be explored and hemiplegia makes my world halved and wobbly.


I was diagnosed 12 years ago at age 24. I was a functionally non-verbal child who presented as deaf and blind, echlolalic, meaning deaf, meaning blind and oral apraxia. I was grateful for my parents for seeing “Paul”.

I had a great mentor Donna Williams (Polly) whom helped me understand the guts of.my “autism fruit salad”.


We are all on a journey from birth to death and I respect your candid honesty in your work, moved by your treatment as a child and your passion for change that I agree with.
Sometimes people have different ideas of what neurodiversity means.

Paul Isaacs 2022

Autism, Disability & Looking Further

Expanding on this further “all” human beings are patchwork quilts made of different elements – environment, mental health, identity and learning styles.

Personality types are within all people up to 4 to 6 this means in to context of autism that there is more fundamentals going on.

Parts That Cause Distress? Parts That Don’t

Also there are parts of people’s autism “fruit salads” which do cause distress (ego-dystonic responses to information processing challenges) so that has to be looked into as much as the parts that don’t.

Egalitarian means the principal of equality for all, if voices and perspectives are being willing or unwillingly silenced then that isn’t really diversity.

Political Bias, Informed Choices & Realities

Autism is not a “culture”, “identity” or “community” inherently. That aspect has been created rightly or wrongly.

This why I am an moderate I do see people as such people.

Maybe that is were true neurodiversity resides?

Paul Isaacs 2022