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