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Autism from the inside


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A Lesson in Time – Mental Health Assessment Pre-Diagnosis

Paul 7 Years Old

Family Assessment

Tuesday 11th February 1997

Presenting Problems

Mr. Isaacs was unable to attend today as he is a shift worker and since accordingly this date he has been changed to day work. My initial impression of Paul was of a much younger lad (he is eleven in May) physically and psychologically.

Paul was eager to explain his concerns to me and at times was very insistent on not letting his mother give a more comprehensible explanation of the situations that had occurred.

Paul’s major sense of unhappiness and the reason for his referral is that he feels he is verbally bullied at school. he gave examples of being taunted primarily about 1.) The way walks. 2.) Shuffling his feet. 3.) He wears glasses – and he has been called “four eyes”. However, he feels that the teaching staff are against him . In year 4 he had an unhappy relationship with his form teacher. It does seem one particular occasion he was humiliated – but to the infants so they could show him how to behave.

Mrs Isaacs also incited another incident which seemed to have upset her more than Paul. It became apparent that when Paul was explaining his situation at school his explanations tented to be repetitions of his parents points of view.

Paul after became muddled and it seemed there gaps in connecting and associating. It was also significant that when Paul referred to “she!”- his pronunciation was really that of “he” – I did check several times, but it appears that both Paul and his mother were unaware of this – which was marked. (receptive hearing problem? speech difficulties?).

Mrs Isaacs pointed out that Paul always had difficulties “concentrating” and settling down to work – she remembers this as steaming as far back as three year of age – When he attended play-group. she also recalls at this age and ever since that has had problems with “interacting with others” (her words). Paul has not many friends and it was brought to Mrs Isaacs’ attention by the teaching staff that he was a “solitary figure” in the playground. His mother also pointed out that they lived close of approx ten houses and that there were other children of Paul’s age, but he tended to say in.

Her explanation for this was that he felt safe and secure behind closed doors. Paul did mention some of his friends, but found it hard to articulate what he felt about his friendships with them. He did admit to hitting out at people at times is was significant that he mentioned his father hit him when he was angry. Mrs Isaacs denied this. Paul’s response was “I suppose Mum must embarrassed that I said that.”

Paul’s self-perception is that his “fairly sensible” , however he admits to being influenced by others into “being silly”, but he feels other children are being “sillier” the than him – “going over the top”. He feels he doesn’t go over “the top”. Paul has recently had to go back to the very basics in Maths with one other pupil. Mrs Isaacs conveyed concern and irritation that the teaching staff had not picked up on Paul’s severe difficulties with Maths; especially in view of him starting upper school at Lord Williams East in the new academic year (Sept 1997). Paul’s reading age is estimated as that of a nine year old. it appears the only positive subject that could of was Paul’ art. Mrs Isaacs believes and feels the teaching staff convey negative messages surround Paul’s overall performance. Mrs Isaacs explained that Paul gets very “worked up” over homework assignments, Paul also stated that he cries very easily hence his vulnerability at school in being bullied. It appears Paul suffers from anticipatory anxiety and expressed his fear of commencing upper school as he has heard he will get “beaten up”. Is is of significance that Mrs Isaacs was unhappy at ‘Long Crendon Primary School’ and suffered “bullying” at ‘Lord Williams’ East’. Mr Isaacs is also being scapegoated at work – he is being ‘verbally bullied’ (Mrs Isaacs’ words) and harassed and feels under a lot of pressure.

Family History

When referring to the history of the pregnancy Mrs Isaacs requested to speak separately – she explained she told no one of the pregnancy – only her partner (whom she is married to). She had been rushed into the JR as Paul “was distressed” – he was a month premature and was in SBCU post birth. She was unable to breast -feed Paul remarking they had said “she was too big”. Transition to weening had been unproblematic. Had been slow in walking – 18 months? He was sleepy baby and had to be woken up for feeds – He had been a “good baby”. However Mrs Isaacs had fond toddlerhood difficult – his “boisterousness”. Paul has had three operations 1.) Circumcision at 2 years 2.) Grommets 3.) Adenoidectomy at 4 years – at the JR and Radcliffe. Tonsillitis – query – Tonsillectomy otherwise healthy. Mother with Paul for all operations – no significant complications

Paul would like help with “the teasing” – he said it although it had been easier recently he wants to be able to cope with it better if it worsens again. He also says he is very sensitive and works himself into a state easily. There is also much anticipatory anxiety regarding this move to Lord Williams’ East in the Autumn. In ascertaining his mood he expresses no helplessness or hopeless feeling and denies suicidal ideation or such thoughts. He does covey and sense of confusion and bewilderment over the treating of staff’s “rude words” (his words) about his self-presentation. (percistanty anxiety).

  1. Assessment from Psychologist (educational?) to check ot cognitive abilities and overall school performance.

  2. Social skills group at “The Park Hospital for Children”. (mother drives) for interaction with class.

  3. Possible Family Therapy – concerns regarding Paul;s parents and levels of depression. Re-enactment of mother’s unhappy school experience and father’s “bullying” at his workplace, especially regarding “authority figures”

Cognitive Abilities , Cognitive Impairment & “Mental Retardation”

“It became noticeable he had very slow speech”

There was a massive transition in 1993/1994 prior to this interaction before this I was echolalic, meaning deaf to large degree and unable to speak in a fluid manner. Having visual agnosias, oral apraxia and challenges around receptive language meant that getting an interpretive and expressive framework was slow, stilted and lengthy. I went through bouts of selective mutism hating my “connected” voice which then in turn triggered exposure anxiety.

there appeared to be a gap in connecting and association.

Still have complex visual and verbal blockages meant that my “cognitive abilities” were hidden and therefore not “seen” I have no doubt that the lady in question had her own frame of reference on how I was processing the information so thinking I was “retarded” was just the tip of the processing iceberg.

‘Bursting into tears quickly’ – Alexithymia, Body Agnosias and Trauma

There are many overlapping reasons why this was happening at this point – the reason in which I was at this assessment was the persistent verbal bullying from a senior member of staff at the primary school I attended. Having body agnosias meant that I couldn’t gauge or manage my own emotional states this would be related to alexithymia the inability to “know” your own states of emotion, the ability to “internalise” them and mentalise them on a “conscious” level however manner years later when I wrote my first book I came to realise that on a “unconscious” all my experiences were unlocked through typing.

(receptive hearing problem? speech difficulties?)

I was traumed from an early age by expressive language (but at times would be intermittently intrigued) due to a language processing disorder (aphasia), I was triggered by exposure anxiety, dissociated easily and would struggle to get incoming information with “meaning” living in the world of the system of “sensing” before awareness mind and the ability to make interpretive connections.

Battling Books & Formulas & Artism

He has severe difficulties in maths.

His reading age has been estimated at an average age of nine.

Not being able to mentalise in a visual – verbal way meant that I had challenges around comprehension and getting meaning from books, written words and maths. (dyslexia, dyscalculia and visual-verbal agnosias) found the process of writing very difficult the way in which I held the pencil, the ability to concentrate on letter and sentence formation. The same goes for maths.

My solace for extraction and distraction was art which was were my mind was freed and felt “at home” I started from a very young around 5 smearing paint on to a piece of paper and I was hooked from that point on then transitioning to drawing by route during this period of my development.

Prematurity & Height

“There is some evidence that babies who were born premature tend to be shorter in childhood, but they usually catch up with those born at term in late adolescence. But our study shows that women who were born very preterm fail to reach the stature you’d expect based on their parents’ and siblings’ heights.”12 Dec 2016

She noted that developmentally and that I seemed “younger” than my age from a psychological and psychical perspective there is a link between having a short stature and prematurity currently I am only about 5’8′ I do not think I will be growing vertically anytime soon.

Did I Have An Attachment Disorder?

I can assure you I was lucky that my parents gave me love, support and grounding even though they didn’t know that I was on the autism spectrum. Did they both have difficult childhoods and upbrings? Yes they did for many different reasons.

My Father had parents his whom were his primary caregivers who didn’t not show him love, affection, boundaries or a sense of meaningful inclusion both of the parents were cold and aloof and didn’t seem to understand (be it wanting or otherwise) the serious practicalities of what parenthood meant for a child’s development and emotional wellbeing.

My Mother was seen as a disappointment to her Mother who was constantly comparing my Mum to other people explaining that she needed to be more like other people as opposed to building up her own sense of self and identity, self-worth and autonomy.

The truth is I am and try to be a objective judge of character when it’s presented to me and the answer is no I did not have a attachment disorder and my parents were not to blame for anything.

My Mother fits the solitary, serious and self-sacrificing personality types she is giving, emotionally connective and generous.

My Dad fits the conscientious, mercurial and adventurous personality types he is assertive, pragmatic and forthright.

I love and value them as human beings because despite their own “shit” they didn’t fling it consciously or otherwise on to me.

Paul Isaacs 2019


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To Friends for Friends What is Happiness? :-)

Smile .jpg

 

 This is sage works, thoughts and feelings from social media when I said about doing a blog about “What is Happiness?” I am pleased with the diverse and really lovely responses. 🙂

  • being understood by people
  • Happiness is what you make of your life and live it to the whole without
  • Happiness is fleeting
  • Joy
  • Happiness for me is seeing my children happy – x
  • I think he’s writing in the broader sense x
  • Happiness is my aspergers. [13 year old] son making me a fan from parts he savaged from dead DVD / equipment and lego – powered by USB and a solar panel to help me with my [menopause] hot flushes.
  • Happiness is walking around with a clear head, able to observe and enjoy the surroundings without anxiety.
  • Or eating a different food 🙂 x
  • Still seeing my little one even though I’m away visiting my Mum who’s 300 miles away.
  • Seeing my amazing son grow from being an angry, confused boy who struggled with ‘the world’ into an ever growing confident , young man with so much to look forward to 💙
  • Happiness is my dog x
  • A fleeting feeling when things are going well. All the more potent when it arrives unexpectedly 😊
  • All of my children bring happiness to me. I am so proud of who they are. I am also happy when my baby makes progress.
  • Happiness is being relaxed, safe and challenged in an enjoyable way.
  • GBU
  • Happiness to me is enjoying the moment without stress or fear but feeling completely at one with the world and relaxed . Its a strong rich feeling making life feel good when you experience it. X
  • Happiness is making a genuine difference through collaborative and creative autism awareness workshops. Nobody wins unless everybody wins 🙂 Hope to see you at one of your future talks, Paul. Best Wishes
  • Happiness is our son being happy. (We only have one child) 😊
  • Doing something I enjoy doing!
  • For me, I think there are very different sorts of happiness. Perhaps the most intense is being aware that someone I love is happy; if it is because of me, that’s even better. Another is feeling that I have done a good job intellectually in some way and increased the sum total of human knowledge. Another is the great feeling of physical well-being that endorphins give you after you’ve been exercising. I climb whenever I can, partly because it is great fun in itself and partly because whatever stresses and anxieties are bugging my life, I feel great once I’ve worn myself out doing it. These are all very important to me.
  • Happiness happens when i’m alone. Its like my brain gets some high by being alone
  • Happiness is being fulfilled. I don’t think the pursuit of happiness is very helpful in itself but the pursuit of being fulfilled..? That’s a slightly different goal but changes entirely how you look at life!
  • Happiness to me isn’t a result of anything, despite its arrival often being influenced by certain things or thoughts or thoughts of things – it is the glowy thing, that glowy thing within, and when it glows inside me, it beams around my bodymask making everything else seem more glowy than usual, and it can be passed around and shared like a flowy magnetic glitter-ocean, though can also be snatched and disappeared at an instant by the click of the claws of a happy-snatching monster.
  • Happiness for me, is…
    As a mum: To see my children achieve even the smallest thing independently. For my boy with autism, especially, when he’s made an independent decision, and when he chooses to hug me and show love. For my NT girl, hearing her laugh big and loud with her friends; watching her dance and hearing her sing.
  • As a professional: Feeling productive and part of a process to produce something worthwhile. Being individual but within a team.
  • As an autism volunteer: When a parent tells me that they no longer feel alone; seeing parents’ reactions when their children reach out to another child or young person and socialise for the first time at Parents Talking Asperger’s.
  • As a friend: Being there for friends whatever in good times and bad.
  • As daughter: Just being with my beloved parents even for five minutes.
  • As a Christian: Learning to be what God wants me to be to serve him and help others. Thanks Paul.
  • to me happiness is knowing that I have the resources to deal with whatever comes up. Not much to ask hey? X
  • You can choose happiness no matter what is going on around you. Happiness isn’t just being content – God gives us the opportunity to see good in all by allowing happiness. But it is a choice.
  • I’ve come to realised that for me, happiness is acceptance of the journey. 😁
  • Easy company with the people I love who are wholly accepting of who I am. X
  • Sitting outside with family and friends during a breezy day. And having a bon fire at night.

Paul Isaacs and many contributors 2016


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Being Thankful For My Parents

Mum and Dad Early 80s

Please note this is from a personal perspective

It may sound like a cliche in many ways to create a blog with a title such as “Thankful for my parents”  but that is how I feel I know that many people may not for many reasons feel the same as me and that is fine.

I am thankful for them because they  have given me good boundaries, have treated me as a human being then growing up as an infant, teenager and now as an adult, they do not let my disability “define the whole package” (I have written many a blog about that subject), guided me to know that failure and being wrong is normal part of life, to accept and take responsibility for both positive and negative actions, to help people who need it, to always be truthful and be true to yourselves.

I value their sage wisdom as many of these “mantras” and “life skills” come from past mistakes and “failures” but as my parents have noted failures are the fruits of success and success comes in many different forms as example setters for us all.

Paul Isaacs 2016

 


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Autism – Visual Perception, Language, “Self” & “Other” & Connecting

Note – This is from a personal perspective of how autism affects me

Wedding Photos 19861CONNECTING WITH PARENTS

In the early years I remember my parents by parts their being, my Mum would be through the feel of her hair and my Dad through sculpting his face and getting a sense of connectivity through tactile stimulus – the system of “sensing” and “energy” that filled the house was care and love.

FAMILY PETS

We had a dog and that was my first experiences of having an animal I liked him very much and could us me tactile system to “piece together all the dots” through stroking him, in affect he was as much “family” as a had through the lenses of my “parents” the energy was good and safe on both counts I didn’t need to understand why? internalise? It just was at in this point of my development that was fine. I knew they loved me but it was “sensing the love” and that was shown back.

Quinn and I

AWARENESS OF OTHER PEOPLE

Today I was asked when I was aware of other people – I had to think about this it was at school in Year 4 that on basic level I was aware of others this may have been due to gaining functional speech (that was developmentally of a 3 year old) and the connects I was trying to make in a body that was just about obeying my commands, a mind swilling with words but finding it hard to grasp them like sand through my fingers or as ethereal as trying to connect touch-wise with a ghost and endless mirage of sounds, hums and tones which I struggled to into words – living before the literal can be just as much a confusing place as being (language wise) a literal person

A SENSE OF “SELF AND OTHER”

Developmentally from a receptive language perspective am stuck in projecting “self” or “receiving” other, but ( struggle still in real-time to have a conversation in the moment, before I gained functional speech I had “patterned” and/or “sensing” speech/language creating my own words for feelings and I also used to sense “good” and “bad” energy this was living in world before the literal and/or significant. I still use this system today despite being able to speak verbally. A “sense of self” is a complex thing I have garnered the basics a few years ago which to me is good. I still can “tune out” but I hope to get there we are all on a journey. 🙂

Paul Isaacs 2015


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My Parents – How They’ve Helped Me – A Moment Of Reflection

Mum and Dad Early 80s

A MOMENT OF REFLECTION

When I was born 1986 my parents didn’t have the word “Autism”, my Autism is a complex mix of genetics and early acquired brain injury (which caused me to have additional issues with learning and processing) due to a difficult birth – However during my early years believe it or not despite my issues, bullying etc. I was a happy child my parents didn’t promote/encourage learned helplessness they pushed me when needed. They also saw as “Paul” not a set of symptoms or traits so – As Donna Williams says personhood is important and one should not be defined by their “condition” confusing it as their “personhood” because they are two different things. They were my teachers, language therapists and so much more.

LOVE & STABILITY

Love and stability was in the home (because it wasn’t anywhere else) and that is what they taught me to focus on that my glass was half full not half empty and this stayed with me all through childhood, teenager years to now, through my jobs and through education.

EMPOWERMENT, CLASSIC AUTISM, AUTISM SPECTRUM & PERSONHOOD

To give hope and empowerment is the key (the foundations where set long ago) and yes I do have Classic autism (I relate to Aspies from a far appreciating their contributions to the broader palette of what different presentations of Autism can be). But Autism doesn’t define me. So that is what we can all to give our own perspective to help others and learn from others perspectives to learn more. I can’t speak for everyone but I can contribute just like others too.

Paul Isaacs 2014


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Venessa Bobb – Autism Advocate, Speaker, Videographer, Editor & Parent – Equality For All On The Autism Spectrum

Venessa BobbVENESSA BOBB

 Autism sees no colour, race, sex, age, class, status or faith!!

That is correct and so true and it encapsulates Venessa’s passionate message that people on the spectrum, carers, guardians and other family members can be anyone. There is no set rule and I like the fact that Vanessa is spreading this empowering message to others and breaking down the tired stereotypes of Autism and is promoting,  advocating and creating meaningful and productive inclusion for all on the spectrum. 🙂

Venessa has a son Nathaniel with Autism & ADHD and I admire her for her support and awareness that she is bringing in and across UK about the importance of inclusion for all, acceptance of all and empowerment for all. 🙂

Thank you Venessa for you tireless work and commitment to this cause. 🙂

A2ndVoice WEBSITE

A2ndVoice BLOG

A2ndVoice WORKSHOPS

A2ndVoice TWITTER

VENESSA’S VIDEO SHOW REAL – BABY LOU PRODUCTIONS

 

Paul Isaacs 2014

 


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How my Parents Interacted With Me As A Functionally Non-Verbal & Language Delayed Child

Mum and Dad Wedding

Mum and Dad

 

Please note this from personal experience – And although I was “non-verbal” externally I was was “verbal” in my head

A lady on the spectrum asked me a question last night about being non-verbal and language delayed as a child and how my parents interacted and communicated with me because of Visual agnosias and Auditory agnosias (meaning blindness and meaning deafness) and other issues. The first aspect was

1. They saw me as “Paul” not broken, damaged, stupid or inferior
2. My disability didn’t define me it was apart of me
3. They used clear succinct language (so as not to overload me)
4. They allowed me to sensory explore (with my body, hands, lips, mouth, tongue, hands my environment) experiencing tastes and textures
5. They allowed me experience different sounds from the TV and watch videos (so I could hear language)
6. Mum used the succinct language to direct me
7. Dad used sensory play which helped with perceiving him, body movements
8. Even though they didn’t have the words for my “profile” they helped in the ways stated above

Paul Isaacs 2014