This is the fifth workshop presentation is about autism and coping with death and loss.
Further Information & Reading
Paul Isaacs 2021
This is the fifth workshop presentation is about autism and coping with death and loss.
Further Information & Reading
Paul Isaacs 2021
This workshop was about the crossover between Autism and Exposure Anxiety. Presented and Hosted by Venessa Bobb.
Cross overs with Pathological Demand Avoidance, Oppositional Defiant Disorder, Reactive Attachment Disorder & Passive-aggressive Personality Disorder.
Paul Isaacs 2020
This workshop is an an introduction and overview of autism using Donna William’s “fruit salad” analogy as the basis. I shall be adding links to expanding on some of the aspects which I spoke about.
Autism “Fruit Salad” Expanded
Autism and Personality Types
Autism and Visual Perception
Autism and Exposure Anxiety
Paul Isaacs 2020
It’s a very lonely road at times with my autism work and advocacy and here is why, I know as I type things will make more clarity as I continue to type.
Since Donna Williams’ passing in 2017 I have tried to advocate for her fruit salad analogy of autism (please checkout previous posts, links and images etc). I know that over her years of advocacy and consultancy she had her fair share of problems and challenges.
Militant autism advocates (on and off the autism spectrum) attacking her online for daring to challenge the status quo, rhetoric and internalised problems within the autism community.
Misunderstandings in her non- soft language terminology and her ability to supply “what if” scenarios etc.
This can a does become tiring on both a mental and physical level as to supply knowledge, it isn’t always easy however I try various different formats and medias to do so.
I believe that the ethical and moral thing to do is to supply with empathy and candour the multi-faceted nature of autism, the presentations, the mechanics and personhood.
Why? Because empowerment in this context means giving people tools to make good in life, to find themselves and be ultimately the best version of themselves. So many people cherry pick what autism “is and isn’t” and that is completely understandable because knowledge is not on the table to be supplied.
So anybody interested in finding out more?
Take time in ingest the knowledge and please know as with Polly my heart is in the right place.
Thank you Paul 😉👍 2020
I presented video workshops on the system of sensing, coined by the late Donna Williams in the presentations I spoke and covered as follows:
The System of Sensing & Mental Health Workshop Part 1
The System of Sensing & Mental Health Workshop Part 2
Donna Williams Interview about the System of Sensing Autism and Asperger’s Experiences
The term, NONVERBAL seems to have a different meaning in the following two contexts of autism
1) Highly logical individuals, with so called ‘Asperger Syndrome’, who have difficulty with understanding the ‘non verbal’ aspect of conventional speech. This shows up, for example, as missing the ‘joke’ or sarcasm… basically where words themselves do not convey %100 of meaning intended.
2) On the other hand, the ‘non verbal’ realm, which you speak of in your book, Autism and Sensing, is a mode of information communicated by feeling, intuition, sensation… a place of art, ‘knowing without asking or learning’ (as with savants). Here the more typical individual has difficulty understanding.
Are these 2 different meanings or different degrees of non-verbal?
They are definitely two different experiences entirely.
There is NONVERBAL LANGUAGE DISORDER (disorder in NONVERBAL language systems such as body language, intonation, facial expression) and being FUNCTIONALLY NON VERBAL. Totally different conditions. Though those who have one can also have the other or have only one of these… same as one can have blond hair and be short or one or the other.
Asperger’s & Social Emotional Agnosia
Now Social Emotional Agnosia seen in Aspergers is a NONVERBAL LANGUAGE DISORDER and means people can’t naturally perceive any meaning to facial expression, body language, intonation unless overtly taught it. This leads them to compensate through logic, intellect and because they generally don’t easily sense this missing realm they develop high intellect rather than high ability to sense pattern, theme, feel.
Autism Sensory Perceptual Disorders & Language Perception Processing
By contrast those with significant sensory or sensory perceptual deficits are not necessarily impaired in the social-emotional realm so it is more natural for them to expand into that realm as a compensation for sensory or sensory perceptual deficits. This is whether because they are blind, deaf, deaf-blind or the perceptual equivalents of meaning deaf (verbal agnosia), meaning blind (visual agnosia) or both.
In other words human beings can be more or less sensing, but if they ALSO have significant sensory or sensory perceptual deficits AND they have no neurological obstacles to sensing (such as Social Emotional Agnosia) then they will be reasonably more likely to become more highly reliant on sensing pattern, theme, feel through whichever sensory perceptual systems are still intact.
So it HAPPENS that there is no sensory perceptual reason for Aspies to be FUNCTIONALLY NONVERBAL in the sense of being speechless. But those who have significant meaning deafness and meaning blindness may have significant struggles to acquire SEMANTICS to speech and will then lack the PRAGMATICS too. Depending on personality and whether they do or don’t additionally have Oral Dyspraxia, Speech Aphasia or Selective Mutism, those with significant meaning deafness/meaning blindness will often be echolalic. Many who have speech and communication disorders (including echolalia) will then be more subject to secondary Selective Mutism. So it HAPPENS that those most likely to become highly sensing as a COMPENSATORY ADAPTATION for significant sensory perceptual disorders will also be those most likely to be functionally non-verbal.
Saying that, SOME will develop fluent type-speaking and some have progressed to functional speech and still remain highly sensing.
Donna Williams 2010
Paul Isaacs 2020
When Donna published “Autism: The Inside Out Approach” in 1996 it was the beginning of a trail-blazing analogy which would look at autism from the factual, compassionate and directional angle.
Looking Outside The Box
It would ditch rhetoric, confirmation bias and group think it would challenge people views (rightly or wrongly) about autism as a singular condition but look at it through the lens as a multi-faceted condition in which the person has their own unique “pieces” which would present differently from person to person.
Setting A Fluid Framework
She quite rightly humanised medical conditions that present themselves as apart of someones autism such as visual perceptual disorders such as faceblindness, simultagnosia and semantic agnosia and expand on the themes of context blindness in pragmatic but emotionally binding way.
Breaking The “Status Quo”
She would advocate for people who had severe apraxia and aphasia as a part of their autism and would need facilitated communication and assisted communication tools. She would advocate for people who struggled with ABA programs which triggered exposure anxiety.
She would challenge the status quo of “all people with autism think in pictures” or “all people with autism are logical literal thinkers”. She would advocate for people with health conditions as a part of their autism.
She would quite rightfully not tolerate internalised bigotry within the autism world and would promote a heart warming and expanding message of egalitarianism in which means equality for all which is not just said but put into practice in a person’s daily life.
Let her videos, blogs and books inform you and empower you for in the end what she wanted out of you was to the be the best version of yourself.
Paul Isaacs 2019
Note this from a personal perspective reflecting on aspects of development
Donna Williams’ wrote a blog which I have included in mine about the connection between “autism and trauma” now these two things are not mutually exclusive. She was very much a person who thought outside of the box and did not her confine her views to rhetoric or fads making for refreshing and reflective reading.
Early Experience “Nature vs. Nurture”
Many things part of my autism are to do with early birthing issues such as placental abruption, brain injury, c-section, circumcision due to phimosis in 1991 age 5 and ear infections which lead to grommets and adenoidectomy age 4 in 1990. Many of these factors had an impact on my developmental trajectory some of them are to do with altered states of development which then in turn create a person who nervous system reacts.
What “Makes Up” My Autism?
For me my autism is due to birthing complications placental abruption, prematurity hemiplegia, language processing disorder and visual perceptual disorders making up about 70% of my autism.
Auto-immune disorders of various types are on my Father’s & Mother’s side. Mum had chronic childhood Ezchema, My Nan on my Father’s side had Non-Hodgekin Lymphoma and My Father Chronic Lymphocytic Leukaemia.
A Broader Perspective Of “Autism”
Looking at the broader palette of what is “autism”? What if people are becoming progressively distant and/or scared of different “Roads To Rome” when it comes to the different factors that come with an “autistic package”. What if things that “look like autism” can actually be apart of what makes someone “non-autistic” and vice versa? Maybe we need stop finding the magic “bullet” for what autism “looks like” and what it is made up of and start looking a specific realities and all that is within them?
People Who Don’t Have Autism?
People who don’t have autism can have things that can be apart of person’s “autism package” to varying degrees – developmental delays, personality types, mental health, environment and learning styles can have an impact on anybody in the end.
Donna Williams’ Blog
Recent studies in reputable medical journals have linked Autism to seemingly farfetched things like being born to mothers with pre eclampsia, being born prematurely, being born to older fathers, being born to smokers, being born by cesarean, being circumcised under the age of 5.
And as an autism consultant since 1996 I would say that of over 1000 families I saw as a consultant, that a rather strikingly significant number of them claimed to notice the onset of their child’s autism in the week following the child’s first birthday party (being posed for photos, candles, cake, room full of visitors, clown etc). And then of course are the plethora of families who swear their child began developing autism anywhere from 24 hours to 3 months after heavy vaccination schedules. Could these seemingly unrelated things have anything in common? Could it even be there is a cascade effect where the child’s autism is present (subclinical) but not showing following a cesarean birth, then becomes progressively more obvious if the same child gets circumcised, has a heavy vaccination schedule and is then thrown a full on first birthday party? It may sound utterly whacky, but is it possible?
“Children can develop a kind of ̳hard-wired‘ autonomic nervous system response to trauma and its triggers due to the ongoing need to utilise the circuitry to promote adaptive defence strategies. Over time they decrease their capacity to access their social engagement system (since this has not been used successfully in great amounts), and as more and more of the world is perceived as unsafe, they come to rely on their defensive states to negotiate their environments, making social engagement very difficult.
Porges research has revealed that how our nervous system interacts with our environment depends on not just the absence of threat, but the absence of nervous system perceived threat. He has developed the term ‘neuroception‘ to describe our perception of safety not just consciously but also – and often exclusively – at a below cognitive level (Porges 1998, 2001, 2003). It is this neurological response of safety that promotes the ability to utilise our newer system and circuits, whilst conversely, the lack of safety promotes a return to using older circuits to mobilise or immobilize in the face of neurologically perceived danger.
When our nervous system detects safety our system adjusts and makes it possible to enjoy closeness without fear, and keeps us from entering defensive physiological states of mobilised hyper arousal and immobilized hypo arousal, whilst still enable the use of these circuits in safe ways.”
Chronic ear infections have been linked to PTSD so why shouldn’t Upper Respiratory Tract Disorders or gut disorders, even chronic severe constipation in children with immune and autonomic dysfunction equally result in such entrapment with pain from their bodies that some children might develop a neurological developmental response akin to PTSD?
In mild brain injury could the brain similarly interpret as trauma things like chronic sensory confusion/overload, extreme emotional dysregulation, the CNS disorientation from untreated food allergies and intolerances, the entrapment of being non verbal in a verbal world or having a body you can’t make work for you. And as one reached age 2-3 when functioning demands of the environment dramatically increase, could inability to organise one’s senses, emotions, communication, self help contribute to a trauma related cascade that progressively derails development accordingly?
What of the trauma potential to an infant of relentless torment from hyperacusis, or the whooshing sounds of Pulsatile Tinnitus, or severe Tourette’s, even relentless ear popping tics nobody can see, the repeated disorientation, unpredictability and loss of control of constant seizures?
If being born to a carer who is in the grip of post natal depression would predispose a child to not having established that initial bonding, would this leave such a child more predisposed to PTSD than one born to a healthy mother? And what of infants who fail to develop normally whose carer then goes through years of mourning the loss of the ‘normal’ child they had expected? Is this also experienced by the child in a similar way to being born to a carer with post natal depression? And what of the maternal separation of premature babies too small to be held by their mothers?
What of immune deficient or other unwell infants left in the care of hospitalswhere they experienced the absolute vulnerability of and utter foreignness of significant medicalisation in the hands of a range of strangers? With a 45% higher incidence of autism associated with circumcision before age 5, could this be traumatising for those children already genetically predisposed to trauma? Could this be extended to children handed over to doctors for heavy vaccination schedules without any later autism having anything directly to do with the vaccinations themselves?
And what of the trauma of a birthday party? We all have different personality traits. Babies too. Some of us are simply not wired for full on, in your face sociable parties when we are one year old. If our personality traits would later make us an attention seeking, self confident, adventurous party animal there’d be no foreseeable problem. But what if our nature was sensitive, solitary, vigilant, idiosyncratic…
It seems predisposition to PTSD is genetically predisposed. Would there then be children already more at risk from a progressive cascade effect of accumulated perceived traumas that would leave other children unaffected? If the children of older dads are more prone to mental illness would this include a higher predisposition to PTSD?
Ehlers Danlos Syndrome is a genetic collagen disorder with overlap with autism. Collagen is the stuff of connective tissue throughout the body, including the vascular system and the brain and is also responsible for immune regulation and brain connectivity but those with EDS also have autonomic dysfunctionassociated with sudden fluctuations in blood pressure (ie floppy veins) due to faulty collagen. These sudden fluctuations commonly get interpreted by the brain as panic attacks. So a child experiencing continual panic attacks caused by autonomic dysfunction would logically also be predisposed to developing chronic fight flight states and associated compulsive involuntary avoidance, diversion and retaliation responses.
Being born c-section leaves the child with lower levels of the calming hormone Oxytocin which is essential to having resistance to heightened threat and anxiety. We also all begin life with a reflex for crawling out of the womb. After using this infantile reflex it becomes neurologically inhibited which leaves us ready for the use of other reflex responses, each essential in the developmental process. Being born c-section leaves this infantile reflex uninhibited.
“Normal performance of primitive reflexes in newborns can be linked to a greater likelihood of having higher Apgar scores, higher birth weight, shorter hospitalization time after birth, and a better overall mental state”.
What about if the mother experienced trauma during the pregnancy? If a mother was living in an abusive relationship would the unborn child be experiencing her own trauma as its own? Is the baby awash with stress hormones? Does the baby also feel this same level of threat that the mother is feeling?
Pre-eclampsia and other pregnancy and birth related emergencies have left mothers acutely anxious and sometimes traumatised and pre-eclampsia in particular has been recently shown to have another high association with autism . In response to this blog article I heard from a commenter who drew my attention to the recent links between Paracetamol and both pre-eclampsia and autism.
I would suggest that the missing link is not trauma but the use of paracetamol (acetaminophen, Tylenol). Rebordosa found that paracetamol use during pregnancy increases the risk of pre-eclampsia. Paracetamol is often used in conjunction with vaccines,ear infections and viruses. We have been circumcising for centuries but autism is a new and escalating phenomenon. So how could circumcision increase the risk of autism? What has changed about circumcision in recent times? The use of PARACETAMOL (acetaminophen, Tylenol) with the procedure to treat pain. This practice began in the mid 1990’s, with recommendations by WHO and the American Academy of Pediatrics. It has been shown that infants have significant difficulties metabolizing paracetamol in the first days of life. Paracetamol is known to have a narrow threshold of toxicity under the best of circumstances.
Three studies investigating prenatal use of paracetamolhave found adverse neurodevelopment in the offspring- ADHD and autism phenotypes in 3 year olds. It is not such a stretch to think paracetamol given directly to the infant could also have deleterious effects. This study supports the paracetamol hypothesis set forth by Bauer and Kriebel and highly warrants further investigation.
Could it be that in some cases paracetemol (acetaminophen, Tylenol) derails neurodevelopment pre-nataly which in turn leaves the child neurologically less equipped to handle acute stress and so has an early trauma response to things someone else would not, then once an acute fight-flight states becomes a chronically triggered/regenerated pattern, that becomes the default social-emotional response to such a wide range of new experiences the person is then further developmentally derailed. Paracetemol is also given to babies following circumcision and after the MMR vaccination. Parents have systematically given Tylenol to their infants for teething, for nappy rash, even for trouble sleeping.
In adults, single doses above 10 grams or 200 mg/kg of bodyweight, whichever is lower, have a reasonable likelihood of causing toxicity. Toxicity can also occur when multiple smaller doses within 24 hours exceed these levels. In rare individuals, paracetamol toxicity can result from normal use. This may be due to individual (“idiosyncratic”) differences in the expression and activity of certain enzymes in one of the metabolic pathways that handle paracetamol (see paracetamol’s metabolism).
US television adverts of this drug psychologically target carers to ‘care for their child’ by quickly reaching for the Tylenol. These advertisements do then rush through the disclaimer at the end, often so quickly it is hard to process and usually completely out of sync with the reassuring tones used in advertising the product moments before.
IF trauma is found to have the most significant impact on brain development, communication development, social and emotional development presenting as ‘autism’, then what is the future? Would it also mean that autism is both born and made? Would we have to accept that a more mildly autistic child could become progressively more autistic if progressively accumulating further retraumatisation through everything from a bad fitting form of intensive intervention to bullying at primary school, to actual abuse from a carer unequipped to healthily care for a challenged child?
Do we have then develop screening for genetic predisposition to PTSD before a child is put through the same approaches and treatments as those without such predispositions? Would the strategies used to turn around chronic fight-flightstates and involuntary diversion, avoidance and retaliation responses in Exposure Anxiety become the most important first interventions?
I could suggest a protocol something like this:
Possible protocol for turning around chronic fight flight states.
a) inform the carers/diagnosticians about the presentation features of ‘autistic post traumatic developmental disorder’ and that trauma and the sources of retraumatisation can have a range of quite unconventional causes.
b) where possible identify initial traumas in each case and ensure these are addressed
c) identify additional re-traumatisation triggers that keep this being reinforced
d) put in place a treatment plan to address any underlying gut/immune/metabolic disorders and associated pain, sensory perceptual disorders and associated sensory distress, communication disorders, movement disorders, chronic information overload as socially non invasively as is possible to stop feeding chronic fight-flight responses.
e) to bring in omega 3s as a natural mood leveller and L-Glutamine where suited to raise GABA in order to facilitate lower doses of mood levelling/anti anxiety medication necessary to give respite to an overreactive nervous system.
f) to start a program designed to raise Oxyitoxin levels to tame over active anxiety responses: start music, massage, body brushing, art and movement programs, animal therapy, singing, laughter yoga, non invasive touch, to help calm the nervous system, get dissociated people feeling safe back in their bodies.
g) to counsel and support families in retaining the approaches that will progressively turn around chronic fight-flight states and thereby facilitate freed up development of more adaptive information processing, communication, and interaction.
And finally what of identification with one’s autism? What if it turns out that we do in fact ‘all have a bit of autism’ and that traumatisation (and retraumatistion) makes the difference in how much we each end up with? Do all people with autism then have ‘autistic post-traumatisation developmental disorder’? A kind of ‘Traumatism’? And would they want treatment or be happy with how they adapted?
At the end of the day, stress may break some of us, but stress also makes us. Stress trains the brain, trains the body. The trick is to build that slowly, progressively, so it isn’t experienced as trauma followed by continual perceived retraumatisation:
I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.
I have never really written about what my job entails – its ethos, perspective and outlook on my page so I think its important to do so. I got a lot of my perspective from being diagnosed in 2010 with autism at the age of 24.
I didn’t know what autism was let alone what it meant for me, so when I came out of the practitioners room, went down the hallway and outside into the fresh afternoon air, my parents were both present and my Mum said you are still “Paul”. This would be one on of many linchpins that built up my perspective.
Connecting With Donna
A year previously I went to see the late Donna Williams at a venue in Oxfordshire and she gave a dynamic speech on autism containing information which up to that point I had never heard of and a year later we connected on Facebook.
It started off from there asking questions about differing elements, pieces and sage advice mixed with wit, humour and her drive to always see people regardless of what label is put upon them as people.
I want to share her knowledge, wisdom and perspective of autism to larger audiences – not only to get to the know the person behind the creation of the autism “fruit salad” but to carry on her work to EMPOWER people.
My ethos is looking at autism as autisms as an adjective, an experience, a describer not a definer, I look at autisms as a clustering of differing conditions and syndromes based in neurology and biology.
Her Legecy & Kindness
I look at mental health issues such as mood, anxiety and compulsive disorders, I look at personality types and their disordered extremes, I look at identity in gender and sexuality, I look at the psycho-social environment and their impact rightly or wrongly and I look at learning styles.
In other words the ethos is based in looking at the “word autism” and taking a three dimensional approach rather than stereotypes, understanding the “labels” and not defining the person by them. We are in the end all born people.
Without Donna’s help I would not be here doing this so my eternal thank you will be to carry on her work and have a broader more collective view of what the word “autism” is.
Paul Isaacs 2018
Humanistic, humanism and humanist are terms in psychology relating to an approach which studies the whole person, and the uniqueness of each individual. Essentially, these terms refer the same approach in psychology.
Humanism is a psychological perspective that emphasizes the study of the whole person. Humanistic psychologists look at human behavior not only through the eyes of the observer, but through the eyes of the person doing the behaving.
McLeod, S. A. (2015). Humanism. Retrieved from http://www.simplypsychology.org/humanistic.html
Looking at whole person means you look at every aspect of the person and how what is going on lets look at this in the context of autism
Holism refers to any approach that emphasizes the whole rather than their constituent parts. In other words ‘the whole is greater than the sum of its parts’. Qualitative methods of the humanistic approach reflect a holistic position. Social psychology also takes a holistic view.
A holistic approach therefore suggests that there are different levels of explanation and that at each level there are “emergent properties” that cannot be reduced to the one below.
Reductionist explanations, which might work in some circumstances, are considered inappropriate to the study of human subjectivity because here the emergent property that we have to take account of is that of the “whole person”. Otherwise it makes no sense to try to understand the meaning of anything that anybody might do.
McLeod, S. A. (2008). Reductionism and Holism. Retrieved from http://www.simplypsychology.org/reductionism-holism.html
I would say with working in the autism field for over seven years you must look at all the factors and how the interact with EACH OTHER such as personality development for example will dictate how people react and however the underpinnings are to do with biological, psychological and environmental factors.
All Voices are Equal
All voices and perceptions are equal and that means that differing realities, perceptions and knowledge has to be taking into account so that can be. There should be no “them vs us” or segregation burns far too many bridges. This can be from differing realities such as neurobiology, auto-immunity and metabolic disorders, dietary needs and many more.
Listening, Empathy and Autonomy
Self-worth, self-esteem, self-perception are to do with how we feel about ourselves in relation to others and how other’s feel in relation to you here are simple aspects of that.
What makes each person with autism so different from each other? How do you learn to ‘speak autistic’? What are the low cost and no cost strategies to help people with autism manage their own particular collection of challenges?
Published in 2005, The Jumbled Jigsaw is an easy to read, ‘quick dip’ self help manual on the ‘Fruit Salad’ model of and approach to the navigation and management of autism. It exposes autism spectrum disorders (ASDs) not as single entities but as a combination of a whole range of often untreated, sometimes easily treatable, underlying conditions. Exploring everything from mood, anxiety, obsessive-compulsive and tic disorders to information processing and sensory perceptual difficulties, including dependency issues, identity problems and much more, it demonstrates how a number of such conditions can combine to form a ‘cluster condition’ and underpin the label ‘autism spectrum disorder. Most importantly it gives case study examples and clear strategies for management of each piece of autism spectrum ‘fruit salad’.
Donna Williams 2005
My Conclusion is that looking at the “bigger picture”, “the whole person” and the interacting components form an “inside-out” perspective means that you can potentially enrich and EMPOWER people live giving the them the building blocks to make choices, self-assertion, independence and self-worth.
Paul Isaacs 2017
This is bottom to top analogy which implements all aspects of what could be in a person’s “autism fruit salad” to start off with the foundation is to understand the mechanics of what is within a person’s “autisms” (rather than autism). By looking at this we can separate it into these aspects.
These will be tailored to the specific needs of person’s profile/profiles looking holistically as well as professional for empowerment, guidance, social support, emotional support and/or any aspect of the person “autisms” that is within the mix. For example you could have someone who has exposure anxiety and dislikes direct confrontation and prefers an indirectly confrontational approach, is profoundly meaning deaf and aphasic. Think how you would build up that person’s profile and empower them?
They will come in many forms as they marriage of each step relies on the one previous with regards to the “final step” this will be looking at what is working, aiding and empowering the person, their families, guardians etc. This could be put in an report or functional document for educational and professional services to have or it could be used as an information pack for friends and family the choice is yours.
Remember autism is not ONE THING it is a CLUSTERING of pre-existing conditions within one PERSON and that is the thing to realise that one person’s reality does not mean that is representational of all because that would mean a lot voices and realities would be left unheard it is time to change the landscape and starts with being open minded.
Paul Isaacs 2017