Note – That this is from a personal perspective of my profile and what makes up “my autism”
Here are all the pieces of my Autism broken down into bits and chucks with a personal perspective on each bit and personal strategies that have helped me over the years.
This is an issue with processing one’s own emotions it affects about 85 percent of people on the autism spectrum and is experienced on different levels depending on how one is affected and what moods create the issue.
For me emotions come outside in and not inside out they are an invasion a wave of energy that is uncontrollable, invisible and scary – negative emotions take longer to process and configure as well – for example it took my 3 whole years to process (emotionally) that I was being bullied at work everybody else knew I didn’t. I a wave of energy hit me that night as I cried uncontrollably with the realisation of what happened again it took 3 years. As a teenager I would tense my face up and self-harm in the form of knuckling my cheeks, slapping my legs and hitting my arms in confusion and disconnect.
- Paul what are the origins of your feelings (helping me find a starting point)
- Paul are these feelings environmental (situational) or is this not
- Use objects of reference and gestural language and representation to explain
Receptive/Expressive Language & Movement Issues (Speech & Communication)
There are many different forms of aphasia which affect both expressive and receptive communication
Sounds and language intermingled and became indisputable I would react with glee and find these “sounds” that people made and tilt my head in wonderment, perplexed and even intrigued by these “sounds” this was at pre-school – event now receptive language is difficult for me (words process back into sounds meaning deafness)
- Clipped telegraphic language
- Tone and overt melody
- Gestural language – creating movements which connect with the words like a play
- Allowing processing time
Swirling sounds and words in my head – I had problems with expressive speech for about the first five years I had no functional language in head for many years – I would have moments of clarity, moments of language which slowly progressed but no one saw because of my external behaviours I had limited words within my head which progressed – no one should be written off if they don’t have expressive speech, I heard things in the playground and slowly processed them and because of how I appeared it looked like I didn’t hear/understand.
- Word and sound play
- Not presumed incompetence
At around the ages of 7/8 years old I gained functional expressive speech of (from a developmental perspective a 3 year old) – with the receptive and expressive language disconnect I had issues with understanding to express and equally expressing to understand. This lead to confusion with not only myself but others around me Speech Apraxia (Verbal Dyspraxia) also compacted the issue (coordination of the mouth and tongue and jaw muscles to extract speech) this was prevalent until late infancy in my CAMHS (Child & Adolescent Mental Health Services) notes speech production was at times heard to understand.
- Clipped Telegraphic Language
- Gestural language (both from myself and speaker)
- Word, Sentence & Language play (use of syntax, meaning, word production, sentence connections)
- Contextualisation of words
Selective Mutism – (once functional speech was acquired)
During late infancy and early teenage-hood I had bouts of mutism (having the ability to speak but because of anxiety would not) this included – people who I sensed were non genuine, too much expressive language from speaker (meaning deafness) so unable to give an answer that was contextually correct.
- Understanding the origins of the mutism (social anxiety, exposure anxiety, OCD obsessive compulsive disorder, language processing disorder, social phobia etc)
- Boosting self-confidence – such as in my cases drawings and exercise
- Understanding the receptive and expressive communication profile
In mid to late infancy I had what was termed a nervous throat this was to do with the “feeling” or an obstruction in my throat causing me to in a tic-like fashion make a loud “Hum!” and “ahem!” sound.
- What are the places of anxiety in one’s life that has caused this
- Making me aware of when I was doing this sound
Sounds, patterns, themes, feeling, movement and experiencing this world, people and place. I don’t use elaborate constructions but do and sense in order to perceive, understand an process I don’t live in a world of literalism nor logic as basis of “concrete” understanding – even now that form of and basis of understanding things, people, environments etc.
- Movies (focusing on the sounds, movements and expressions)
- Music (tone, melody and rhyming)
- Observing surroundings and contextualisation
- Semantic Agnosia (Meaning Blindness)
- Simultagnosia (Object Blindness)
- Prosopagnosia (Face Blindness)
- Visual – Verbal Agnosia
- Colour Agnosia (Recognise red with “meaning”)
- Mirror Agnosia
- Form Agnosia
I see faces (face blindness), bodies and visual environment as fragmented (object blindness) which also meant I could not see body language or facial expression , flat tursh and without depth or meaning (meaning blindness) not understanding self and other of what is around me for example it took me until 16 years old to understand that when I looked in the mirror firstly I was looking at myself (although I still get a level of disconnect) and that what “seems to be in front of me” is in reality behind me. My visual perceptual systems have layered effect on what I see and interpret.
- Sculpting objects in my space this would including licking, sniffing, mouthing as a way to externalise the object making it real for me this help me map out my space
- Preference for having no shoes of socks on in my youth and around the house (patterning movements)
- Sculpting faces remembering and connecting with someone by touching their face (I have only done that to 7 people in my lifetime to date)
- Having objects on display not “hidden” because I don’t have visual memory so placement is important
- Recognising people by sensing their patterns of movement and their voice
- Tinted lenses help with sensory integration, moving in visual space, depth perception, body language, posture and confidence
Hearing sounds environmental with no on origin (auditory agnosias) hearing words as “sounds” (verbal auditory agnosia/receptive aphasia) missing tone, sarcasm, idioms not because of literalism but because of how much language I can process before I “hear” nothing.
- Telegraphic language and clipped words for the origins of environmental sounds (auditory agnosias)
- Telegraphic and gestural language – being overt, pantomime like in expression, tone and melody
- Music, rhythmic beats and movement help my brain “work”
Not being connected to my body means that pain is not recognised as well as a sense of my own body its inter-connectivity and its connection (as a whole form) around the world around me, I appeared odd to bouts of trauma having a tooth almost knocked out (an elbow to the mouth) was me with indifference to pain but shock and sadness at the blood (this element coming out of me) and a dislocated arm was met with anger and confusion because of the lack of movement not the pain. During times of mental illness I self-harmed both my arms not “knowing when to stop” and as a child I didn’t have knowledge of my fingers (my limbs also rolled into one another as if they didn’t exist).
- Pressure points around my body – bracelets on wrists, tight shoes, belt, jacket and/or shirt and long hair tied back (adding pressure getting a sense of my head)
- As a young child smearing paint, moulding play dough and sifting sand (to get a sense of my “foreign fingers”)
- Messy play as a child
- Dental appointments (for me this is form of sensory integration and very relaxing) 🙂
Dissociative Disorders – Recognised in 2012/Revised 2014
- Post-Traumatic Stress Disorder (PTSD)
- Dissociative Disorder Nos (DDnos)
In late infancy I started to dissociate as coping mechanism during these years and for many after taking myself away from both the situation and environment, persistent bullying during my educational and work years didn’t help the issue and I “created” personas (with strong reactionary personality profiles) to deal with this. I developed PTSD some years ago reliving an abusive incident that happened in my mid teenager years.
- Understanding that dissociation is on a spectrum from daydreaming to higher frequencies and detachment of you the person and/or the environment you are in.
- Therapy that includes mapping memory, incidents, personas and coping mechanisms
- Understanding trigger responses
- Personal origins of dissociation
- Obsessive Compulsive Disorder (OCD)
- Exposure Anxiety
- Schizotypal Personality Disorder(During late 2000s)
- Borderline Personality Disorder(During late 2000s)
I started to develop OCD in my early teenager years this was persistent and would resulted in hand washing, placement moving and plug and switch checking, door-slamming and checking. Exposure anxiety was to do with an involuntary response to direct exposure interaction this would lead me to run away literally (or in my mind). Like many people on the spectrum I advocate the personhood first in the late 2000s I developed two distinct personality disorders (extreme versions of my “normalised” personality traits.)
- Origins of OCD – in my case this was fear of the house being burned down, burglary, germs and confirmation, and invasive illness that would lead to pain and/or death
- Indirect confrontation for exposure anxiety talking away from me, talking about me but allowing me to hear it and integrate it without being in the mix
- Knowing personality its traits and extremes (disordered versions of “normalised” versions/traits)
Words swilling in my head I found them hard to process and strand together as words formed in my head over time I found it hard to translate them onto the page, the same with numbers which don’t swill in my head I found it hard to grasp numbers their meaning and their interpretation and their overall function.
- Clipped sentences – one stage at a time
- Pens with extra grip (fine motor movements)
- Alternate ways of writing
- Function and context of what number “mean”
Many foods would make me fill ill both in body and mind causing me to have brain fog, lack concentration and further hinder my processing and integration of information from my surroundings, language and sounds.
- Understand foods, their content and what ingredients they have in them
- Piecing together what foods are making you ill, unwell and have brain fog
- Piecing together what foods you can have that don’t make you ill
- Bruxism– Teeth Gnashing
This can be related to anxiety it is the slow stripping of enamel making them look “smooth” and/or “chipped” in appearance I have this with many teeth on one side of mouth
- For me regular checks at the dentist and a gum guard at night has helped with issue
Genetics – Developmental Agnosias & Minicolumns
Some agnosias, sensory hypersensitivity, sensory integration disorders and many other conditions and syndrome can be passed down and can be seen as congenital in nature how the brain has grown with genetic encoding – Neurologist Dr Manuel Casanova calls this Minicolumns please take a look at this blog about his research and findings
Donna Williams – Autism as a “Fruit Salad”
Donna is quite correct in letting the world know that autism is a “clustering” of different conditions (both neurological and metabolic systems), syndromes, personhood and personality extremes, environment, mental health and learning styles. No one person with autism is the same and that means there is a high level of diversity to their which is good.
Brain Injury Relates To My Autism Profile
Having brain injury at both has also had an impact on my autism presentation I was born premature and through placental abruption, cerebral hypoxia, silent stroke and damage the left hemisphere of the brain (which is related to aphasia, language processing, visual agnosias, simultagnosia, apraxias and visual spatial functioning).
I would say that these added factors has made my autism “Fruit Salad” more complex in nature and presentation – there are clearly other members of my are on the on the autism spectrum who have been diagnosed but their profiles are very different from mine in terms of presentation the mechanics.
Having an Autie Profile
Having an Autie profile in terms of presentation means I live in world (from a processing perspective) that is less literal, less logical and I use my sensory systems to work out the world I live in and I think it is important to know the mechanical differences between Autism and Asperger’s Syndrome and the people in between profiles of the two “Aspinauts” .
Every profile is unique in presentation so interventions, learning and communications will have to be person centred.
Personhood First? Why?
For all what is said and done I want to be known for my personhood first my autism comes along with me wherever I go, however it doesn’t define my being, it doesn’t make me what I am in totality (it affects how I perceive and processing the world). I love art, poetry, music, movies, fashion, drawing, being silly, bad jokes, dogs and want to know for those things first.
I hope this helps others. 🙂
Paul Isaacs 2014
A Reminder of my stance on Autism Politics – everyone has a story to tell and the in a free democracy (and within moral context) should be able to express their views but when it becomes to being militant, political and nasty I don’t want any part of it.
LISTENING TO EVERYONE
We must take into account both stances in a balanced manner (their realities,experiences, thoughts and feelings) which is excellent but not militancy it will get people nowhere it makes others feel alone and “wrong” (for what ever reason) – lets just except both sides and be neutral and open our hearts that both sides have equal validity.
NO SINGLE REPRESENTATIVES
Remember one group of people can not represent all (in any context), one person cannot represent “one condition”, one group cannot be self-righteous but what we can try and do is be accepting.
The Journey to having Autism is diverse, complicated and very real for parents/carers and they have a right to express their reasons for how their child has come to have Autism.
AUTISM & AUTO-IMMUNE ISSUES
Being open to the fact that people some with Autism (including my Father) have compacting health issues which can lead to serious complications, some people have metabolic, collagen, gut and cellular which is APART of their Autism Profile and can in turn have an impact on their communication, sensory integration/processing.
AGNOSIAS. APRAXIAS, APHASIAS & BRAIN INJURY
Autism Processing includes – Agnosias, Apraxias, Aphasias are related to brain injury (just read about these conditions and see for yourself) and and some people’s trajectory to getting “Autism” is through brain injury. (but that is my journey not anybody else’s).
AUTISM & PEOPLE WITH A LEARNING DISABILITY
Some people with Autism have a Learning Disability which is to do with how people cognitively processing information (not a “lack” of something but that is how it is portrayed) – the lack of inclusion for people with Autism and an LD is a personal worry for me as inclusion for all should mean that they have views and opinions too which are equally valid.
DIFFERENT FORMS OF COMMUNICATION
Some people with Autism have others ways of communicating (FC for example) their inner most thoughts, feelings and expressions which are equally valid in way in which they are expressing it and shouldn’t be frowned upon or questioned as it is their way of communicating.
LISTENING TO OTHERS
So lets strip away all the politics from both sides and listen to each other. I live in hope.
Taking a step back from this has be a relief and remember people on the spectrum’s personhood’s never let them forget that.
Paul Isaacs 2014
I have a lot of respect for her. A very lovely lady I saw her last October at the National Autistic Society she spoke about Autism and Sensory Issues which includes Sensory Sensitivities but ALSO Sensory Perceptual Disorders which she calls Sensory Agnosias – Agnosias can be an important part of a persons’s Autism “Fruit Salad” (Donna Williams) She covers many of them including Prosopagnosia, Visuospatial dysgnosia, Semantic Agnosia, Simultanagnosia and many more.
I also have a lot of respect for, a lovely lady also. She has written extensively from personal and professional views on the inter-linkage of Agnosias and how they’re with a person’s Autism profile. From her own personal memoirs, books, blogs and presentations and many years as an Autism Consultant.
Developmental Agnosia (n.) DEFINITION
1.(MeSH )Loss of the ability to comprehend the meaning or recognize the importance of various forms of stimulation that cannot be attributed to impairment of a primary sensory modality. Tactile agnosia is characterized by an inability to perceive the shape and nature of an object by touch alone, despite unimpaired sensation to light touch, position, and other primary sensory modalities.
Autism, sensory perception and agnosia by Donna Williams
Two Warrior Women Indeed 😉
Paul Isaacs 2014
Note – This is a personal experiences of the trajectory of my Autism
- Hemiparesis or hemiplegia of the lower half of the contralateral face
- Hemiparesis or hemiplegia of the contralateral upper and lower extremities*
- Sensory loss of the contralateral face, arm and leg*
- Ataxia of contralateral extremities*
- Speech impairments/aphasia: Broca’s, Wernicke’s or Global aphasia as a result of a dominant hemisphere lesion (usually the left brain)
- Perceptual deficits: hemispatial neglect, anosognosia, apraxia, and spatial disorganization as a result of a non-dominant hemisphere lesion (usually the right brain)
- Visual disorders: déviation conjuguée, a gaze preference towards the side of the lesion; contralateral homonymous hemianopsia Overview
Which resulted in the following –
- Aphasias Broca’s and Wernicke’s
- Auditory verbal agnosia
- Auditory agnosia
- Apraxia of Speech
- Visuospatial Dysgnosia
Stroke – Not not all these symptoms apply to me
- Contralateral loss of pain and temperature sensations.
- Visual field defects (contralateral hemianopia with macular sparing).
- Prosopagnosia with bilateral obstruction of the lingual and fusiform gyri.
- Superior Alternating Syndrome (Weber’s syndrome)
- Contralateral deficits of facial nerve (only lower face, upper face receives bilateral input), vagus nerve and hypoglossal nerve
- Ipsilateral deficit of oculomotor nerve
- Horner’s Syndrome
Peripheral territory (Cortical branches) – Not not all these symptoms apply to me
- Homonymous hemianopia (often upper quadrantic): Calcarine cortex or optic radiation nearby.
- Bilateral homonymous hemianopia, cortical blindness, awareness or denial of blindness; tactile naming, achromatopia (color blindness), failure to see to-and-fro movements, inability to perceive objects not centrally located, apraxia of ocular movements, inability to count or enumerate objects, tendency to run into things that the patient sees and tries to avoid: Bilateral occipital lobe with possibly the parietal lobe involved.
- Verbal dyslexia without agraphia, color anomia: Dominant calcarine lesion and posterior part of corpus callosum.
- Memory defect: Hippocampal lesion bilaterally or on the dominant side only.
- Topographic disorientation and prosopagnosia: Usually with lesions of nondominant, calcarine, and lingual gyrus.
- Simultanagnosia, hemivisual neglect: Dominant visual cortex, contralateral hemisphere.
- Unformed visual hallucinations, peduncular hallucinosis, metamorphopsia, teleopsia, illusory visual spread, palinopsia, distortion of outlines, central photophobia: Calcarine cortex.
- Complex hallucinations: Usually nondominant hemisphere.
Due to a silent stroke within the womb which is to do with
- Visual field deficits
- Pain Agnosia (Analgesia)
Additional injury to the left hemisphere to the such as
- Semantic Agnosia
- Visual agnosias
- Visual Memory
- Gertsmann Syndrome (reading and writing difficulties, left right confusion, Finger agnosia)
It is important to know the trajectory and the why’s and the hows? of how someone has Autism, all this being said I will not let this DEFINE my PERSONHOOD but it does continue to explain why a process and communicate in a particular way. 🙂
Paul Isaacs 2014
Certainly one to consider as part of my “Fruit Salad” I have also always been “stiff legged” so hypotonia in both my legs and middle/trunk of my body, issues with sports, holding cutlery, Apraxia of speech means I do have a monotone voice at times which is loud – with unusual inflection, slow eyes/mismatched eye movements also to do with Visual agnosias and eye darting/flickering. Interesting. This also overlaps with Visuospatial dysgnosia and Dyslexia. Also Cerebral Hypoxia at birth kind of makes sense to me. The more you learn the more you understand. 🙂
ATAXIC CEREBRAL PALSY – OVERVIEW – copyright from cerebral palsy alliance
What causes ataxia?
Ataxia results from damage to the cerebellum. The cerebellum is the balance centre of the brain. The cerebellum fine-tunes movement commands in order to compensate for whatever posture is being used. It also accounts for the various forces being generated by different parts of the body.What does ataxia look like?Ataxia can affect any part of the body and impact upon the movements required to do many day-to-day activities.It can affect a person’s legs, arms, hands, fingers, speech, eye movements and even muscles involved in swallowing.Effect on the upper limbs (arms and hands)When ataxia affects the arms and hands it may cause a tremor or shakiness due to the over-correction of inaccurate movements – this means that when a person reaches for an object, they overshoot the target.It also results in difficulty performing tasks requiring precise finger movements such as handwriting or using cutlery, or movements that require regular repetition such as clapping.Effect on the lower limbs (legs)When ataxia affects walking, a person is unstable and likely to fall. As a result, the person usually walks with the feet spread further apart than the hips, which is known as a ‘wide-base gait’. This is done to try to compensate for their instability and poor balance.This way of walking can sometimes give the mistaken impression that the person is under the influence of alcohol or drugs. Because their balance is affected, the person may also fall without reason, or be unable to compensate for variations in the ground surfaces or an accidental mild bump from the side.Effect on speech and swallowingAtaxia may have an affect on speech and swallowing. When ataxia affects speech, it is sometimes called ‘scanning’ speech – the person uses a monotone voice with a breathy sound; sometimes there are unusual accelerations or pauses between their syllables.Effect on the eyesAtaxia may sometimes cause slow eye movements. When ataxia affects the eyes, if the person attempts to change their eye-gaze quickly, their eyes often miss the target. It is like the eye’s overshoot or underestimate their mark and then have to make ‘catch-up’ movements.
Note – This is personal to my profile all profile are different on the Autism spectrum
Looking back at my learning profile at school, I lived in a world of visual fragmentation and word blindness, seeing things in pieces not wholes – form agnosia, prosopagnosia, simultagnosia, semantic agnosia & visual – verbal agnosias this also meant I didn’t have visual memory. Early signs of this was where in my photo to the left appearing cross-eyed, lack of spacial awareness from an early age, not understanding visual contexts (running into the sea with clothes on), drawing by route and touching my enviroment.
VISUAL MEMORY IMPAIRMENT OVERVIEW – DORSAL STREAM
Damage to the posterior parietal cortex causes a number of spatial disorders including:
- Simultanagnosia: where the patient can only describe single objects without the ability to perceive it as a component of a set of details or objects in a context (as in a scenario, e.g. the forest for the trees).
- Optic ataxia: where the patient can’t use visuospatial information to guide arm movements.
- Hemispatial neglect: where the patient is unaware of the contralesional half of space (that is, they are unaware of things in their left field of view and focus only on objects in the right field of view; or appear unaware of things in one field of view when they perceive them in the other). For example, a person with this disorder may draw a clock, and then label it from 12, 1, 2, …, 6, but then stop and consider their drawing complete.
- Akinetopsia: inability to perceive motion.
- Apraxia: inability to produce discretionary or volitional movement in the absence of muscular disorders.
PECS wouldn’t have helped me piece things to together in context and I certainly wouldn’t of seen it as a functional tool I would seen the card in bits and pieces and being mono-tracked I would have had three pieces of communication to deal with
- The cardholders voice – Would have been jumbled
- Picture – Would have been fragmented and therefore no meaning nor context would have been made
- Word/s – Jumbled and distorted due to dyslexia and visual-verbal agnosia
CATERING FOR ALL PROFILES – A NON-VISUAL LEARNER
I learnt best by touch – touch meant connecting, communicating and integrating, touch was more meaningful than the jumbling of too many words (written or expressed). This is how it worked for me. 🙂
- Sensory Exploring – touching, licking, sniffing, rubbing, mouthing
- Sound Exploring – checking the phonics and depth of sound, through touch and echolalia
- Environmental Connecting – “Mapping out surroundings” by using a kinesthetic system
Remember all learning profiles are a diverse as the communication profiles and sometimes they both inter-relate and connect.
Paul Isaacs 2014
Agnosia (from ancient Greek ἀγνωσία, “ignorance”, “absence of knowledge”) is a loss of ability to recognize objects, persons, sounds, shapes, or smells while the specific sense is not defective nor is there any significant memory loss. It is usually associated with brain injury or neurological illness, particularly after damage to the occipitotemporal border, which is part of the ventral stream. Agnosia only affects a single modality, such as vision or hearing.
“Agnosias” In the Context Of Autism
Donna Williams has in particular described how agnosias have effected how sensory experiences in the world and they’re apart of her Autism Fruit Salad Model (1995/2005) – and I have learned a lot from about my agnosias and sensory perceptual issues that I have through vivid and reflective descriptions.
Do All People on the Spectrum Have Agnosias?
I think to answer to this question is yes and it what cluster of agnosias the person has that will effect the way in which they process’ the world around them differing profiles means different types of agnosias can be present. The more awareness of the inter-relationship between autism and agnosias which both Donna Williams and Olga Bogdashina have documented has certainly made crucial and proactive waves in this relationship.
Paul Isaacs 2014
The Autism spectrum is a diverse spectrum of different profiles or as Donna Williams puts it “Fruit Salads” and different profiles means different presentations – I myself was diagnosed with Autism in 2010 and through recent interesting and fascinating conversations with Donna here is why I have an Autie Profile.
Copyright D.Williams from her Blog Differences between Aspergers and Autism ‘fruit salads’?
mood, anxiety, compulsive disorders commonly observed since infancy – This is in my book “Living Through The Haze” in my early years I was showing signs of these issues from pre-school onwards
commonly amazing balance but commonly hypotonia
simultagnosia/meaning blindness rather than just scotopic sensitivity – Visual fragmentation and “seeing without meaning” is specifically to do with both simultagnosia, context blindness and semantic agnosia
verbal agnosia/meaning deafness – I have problem with filtering words with meaning they revert back sounds the larger the chunks of information
verbal communication impairments (aphasia, oral dyspraxia, verbal agnosia and associated echolalia and commonly secondary Selective Mutism)- “losing words within me”, having problems with articulation, patterning, themeing and feeling my own langauge (before interpartive language), reading information without meaning, echolalia and when speech was gained
higher severity of LD/Dyslexia/agnosias – Yes this relates to understanding/processing information
tendency toward OCD/Tourettes, also higher rate of Schizotypal PD, DPD is common and tends to be more severe – Yes developed OCD aged 12, tic disorder and throat clearing age 8, Schizotypal and Borderline PDs
higher tendency to Exposure Anxiety more than AvPD – Exposure Anxiety in Childhood/Teenage Years and and Early Adulthood
poetry by those with autism as opposed to AS commonly indicates those with autism can have high levels of introspection, insight – Yes this does relate to me
ADHD extremely common co-occurrence – Hyperactivity as a child
Donna Williams Analogy does expand on the true diversity of Autism and all it’s different presentations I hope this helps others as much as it has helped me.
Paul Isaacs 2014