We were so pleased to have Paul Isaacs back on Wednesday 17th September to speak to us about his autistic experience and that of others he has mentored. Paul Isaacs bio
Born in 1986, Paul was born a month premature. The birth was difficult, resulting in foetal distress, placental abruption, hypoxia and brain injury. This resulted in an autism diagnosis, but not until he was 24. The bio above explains his growing up in a little more detail.
He went to mainstream preschool, but had difficulties with processing the way most neurotypical children would. He just has pictorial memories of movement and sound. Only about 20% of anything was processed by his brain. Therefore he developed his own language, as, he indicated, a lot of similar autistic children would, living in his own world. His language was largely garbled, but he could only express what he was receiving. This was a world before interpretation.
He described a world of mergence, crying when perceiving danger (being held by strangers), being aware of people’s energies, but not having the ability to deal with that energy. At this stage, getting to know his environment was about merging with objects, meaning fixation. For him it was water and flushing toilets. Some autistic children will be context blind, meaning they don’t realise the dangers, in, for instance, rivers, lakes, etc. Fortunately Paul’s fixation was slightly safer!
Paul didn’t start to speak until he was aged 7 or 8. This was a very difficult process because he had to trade all his own language for proper speech, which was completely foreign and abstract to him. As I type it seems as if it might be like one of us trying to learn Chinese or Russian or another language that doesn’t have any similarity to English. He also used echolalia, which is repetition of what one has already heard, but is, as he described, being, not doing.
While on the subject of language, Paul described his experience working with Murray Bruce (the DJ Ken Bruce’s son), who has a form of apraxia, which means he’s not in control of his body. This gave the impression that he wasn’t ‘in there’ or aware. However, he was acutely aware, but his body was like a cage and wouldn’t let him display that he was. Aphasia was another term Paul used to describe a man with whom he worked at a day centre. It means an impairment in a person’s ability to comprehend or formulate language (Wikipedia). He could write, but it would be very difficult. Murray could type, but only with one finger.
Sensory perception – Paul’s school life:
Paul talked about Agnosia, loss of knowledge. Sensory organ isn’t damaged, but perception and awareness isn’t coming through. Also Semantic Agnosia, where everything is fragmented, tunnelled. The focus is on the face/one part but looses everything else. Children will be tactile, sensory learners, experiencing their environment by licking, tapping, and rubbing objects. He mentioned that Pecs wouldn’t have worked for him because pictures had no meaning at the time. He asked, how does he think if he has no pictures? The example was if he thought of a church, he would think of a particular church he knows, the stone, smell of the grass, etc. However, someone else would simply visualise a building that looks like a church.
Another aspect of his condition that he talked about was face and context blindness. Instead he recognises voices and names. He knew his father through touch and his mother through her hair and was blind to his own face until he was about 16. The receptionist at his school was only recognised when she was in school, at her desk outside of school/context she was unrecognisable. This is somewhat true for many, I believe, including myself. I’ve had a few instances where I’ve not recognised someone at first because they are out of context.
Physically and sensorily, Paul found PE in school a real struggle. Simply changing into his PE kit was a workout as he didn’t have the body awareness. Pain agnosia was another term he used in connection with this, meaning the body’s ability to make him aware of pain was delayed. If he hurt himself he wouldn’t realise until later when the pain kicked in.
Academically, he found reading very difficult due to Visual Verbal Agnosia, inability to recognise visual objects accompanied by verbal sound (as I am understanding it). Even if he got the phonics, however, his comprehension was delayed, as were his expression of thoughts and feelings about the text.
Here, I thought it would be useful for many to mention that someone brought up Calibre audio books and another mentioned Speechify, which ‘reads’ the book to you.
There was also some discussion about the pros and cons of facilitated communication.
On communication, he discussed the concept and his experience of self and other, or all other and no self, but not both at the same time. Some examples:
- He worked in a cafe and someone asked for a muffin. It was frozen, but he got it and gave it to the customer, who asked what he was meant to do with it and was aghast at Paul’s reply – which was to take to the til, buy it, take it home, defrost it, and eat it. Paul didn’t get the customer’s reaction because he was focused on self and not other.
- Another time he had an employer who he told didn’t do his job properly (apparently carrying on with female colleagues). The employer was shocked but Paul only thought he was helping him.
- At work in a deli he was instructed to cut cheese and ham, but got irritated when people kept coming up to his counter, interrupting his task. Focus on self again, but also not comprehending the unsaid, which was to also serve customers.
Lastly, Paul mentioned his glasses, which help him to do self and other better, by helping him to read body language, which he couldn’t to until he was 27. They bring things more into focus, because without them things are still fragmented.
I messaged Paul later that day to ask more about self and other, and Sematic Agnosia so I’ve attached the links he sent me here, in case they are useful.
https://pubmed.ncbi.nlm.nih.gov
As always, it was a great talk by Paul, who gives a unique insight into Autism. We look forward to seeing you at the next coffee morning on 15th October when Diana Wright, Nutritional Therapist, will be joining us to talk about nutrition and natural healthcare.