Outside of the thinking box

Uneasy parenting

As a babe in arms she stopped breathing at least twice. The memories are very clear. She suddenly jolted forwards and went very stiff. She was locked like that for a few interminable seconds and then she flopped completely limp and lay apparently lifeless in my arms. For more terrible seconds her chest did not rise or fall.  Then she inhaled and breathed again. We had reported the early signs of the jolting to our post-natal health visitor. She said we were probably imagining them.

When the attacks became unmistakable we went to our general practitioner. Within the same day the chief paediatrician of the local health authority was knocking on our front door.  We described the attacks as he examined our child.  In the less-sensitive colloquialism of the times he described them as ‘Salaam Spasms’ and then told us the more medically correct descriptor was Infantile Convulsions. We had to act fast he said. They could cause brain damage.  We will never know if the jolting we had supposedly ‘imagined’ caused brain damage to our daughter, and neither will she, because even if we described it to her now some thirty-five years later, the concept of brain damage is way beyond her comprehension.

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It is always dangerous to confuse cause with consequence and for all we know, the convulsions may have been symptoms rather than sources, but that reasoning doesn’t reduce the regret at not seeking the opinion of the GP sooner.

Jenny received frequent monitoring at the clinic of the paediatrician who subsequently modified his diagnosis and decided the epilepsy was probably of a different type. Reassuringly, a change in medication eventually brought the seizures under control.   However, there are now videos of ‘Salaam Spasms’ on YouTube and they look very similar to what we observed at the time. Perhaps her convulsions evolved, or she may have experienced more than one type. What is certain is that the epilepsy was only part of the problem.

Jenny was late to sit, to stand, walk and talk. Her range of play was limited and repetitive. She was diagnosed as being developmentally slow.  At two years she was assessed as having a Development Quotient of fifty-seven per cent of what was regarded as standard progress. There is a very vivid memory of standing at a shelf in the Harris Library in Preston and reading the prognosis regarding the future independence of a child with that quotient. The author said it was unlikely that a person with that score would ever enjoy a truly independent life. The forecast has proved to be correct.

Baby JennyChildbirth is the end of adolescence. Having children finally forces you to grow up.  Responsible parenting is all-consuming and the initial joy is soon tempered by the realisation that you are in it for the long haul. When your child has a disability the prospect is of a journey that will be much more arduous and may never end. Furthermore, there is the realisation that the child’s journey is likely to continue long after the parents have to get off.  While this is true for any offspring, having a child with a disability attaches the additional luggage of a peculiar and incessant anxiety.

Aspects of Jenny’s behaviour led us to search for explanations and, as a result of following up on a suspicion of a specialist nursery nurse at the Willows Child Development Centre in Ashton, it was my wife and I who were the first to diagnose her as autistic.  Medical professionals were reluctant to agree. This was in the mid-1980s and autism was much less well-known and much, much less frequently diagnosed. Most people outside of the medical profession had not heard of it.  The term itself was coined by Swiss psychiatrist Paul Eugen Bleuler in 1912, but it has only been used its contemporary sense since the 1940s.  The text books that we consulted described a great deal of the symptoms that Jenny displayed.

We had observed simple play that was much more repetitive and obsessive than that of her peers from her earliest days.  She would, for example, spend hours simply feeding a necklace of beads through her fingers. She also displayed very particular phobias.  She was terrified of passing under a stretch of horse chestnut trees that extend their canopy over part of the pavement between our house and the local clinic.  When a little older she developed a phobia of ferns. Whilst out on a family ramble we were faced with an entire fell side covered in bracken. We were too far into the walk to turn back. She screamed, went completely pale, physically shuddered and kicked, fought and wet herself as we forced our way through.

Tbox 3 ferns

In 1979 Lorna Wing and Judith Gould reinforced the classification of autism, as defined by Leo Kanner some thirty years previously, as persons who had impairments of social interaction, communication and imagination (the ‘triad of impairments’), together with a repetitive stereotyped pattern of activities.[1]

This criteria – though extended and embellished of late – has remained as the cornerstone of autistic diagnosis.  The imagination aspect was impossible for us to adequately test, but everything seemed to fit with what we saw in our daughter.

Persistence on our part eventually led to a referral to a Professor of Child Development at the Royal Manchester Children’s Hospital, where Jenny was assessed and our suspicions were officially confirmed.

Tbox 4 NAS old and new logo
The National Autistic Society logos: former (left) and current

We joined the National Autistic Society, which at that time had a logo incorporating a jigsaw piece, because it claimed that for persons with the condition, life was like a jigsaw in which some of the pieces didn’t fit.  This was a symbol that had its uses, but was subsequently replaced with more inclusive designs. Some people, including some autistic people, were dismissive of the emblem, even to the point of despising it.[2]

 

The parents’ puzzle

Tbox 5From the perspective of the autistic person the logo change was prudent, but a jigsaw is not an inappropriate image for the puzzle that a parent of a disabled child must tackle every day. As you try to work out the nature of your child the pieces are hard to find and to fit, and looking at the pile in the box, you have no way of knowing if they are all there.  All you can do is search, persistently struggle, and hope.

When you first encounter autism as a permanent aspect of your future it can be bewildering and frightening. There is a wealth of information available today. Thirty years ago resources were sparse and littered with unrefined studies ranging from the ridiculous – so called ‘refrigerator mothers’ – to the absurd – that the solution lay in the study of seagulls.[3] What has remained constant is the core truth of the condition: it is not in itself a learning disability, but a disorder, and it is incurable.  Many myths about the nature of autism are being eroded, for example, that it affects more boys than girls.

However, there are other discredited ‘myths’ which my experience leads me to believe are wrong but nevertheless can help a parent to cope.  It is claimed you cannot be ‘a little autistic’ and that we are not all autistic. In a medical sense both those claims are correct, but watching Jenny wrestle with her world has led me to the conclusion that autism is a distortion of normal behaviours that we all exhibit. We often fail to communicate effectively, and we frequently display irrational fears (spiders, birds, people dressed as clowns) or particular obsessions (shoes, cars, sports, soap operas) and one way or another we all encounter social awkwardness to some degree.

The imaginative impairment criterion is a very difficult one to either measure or prove. The imagination is the most expressed and the least explored universe of human experience. The ‘normal’ mind must limit its imaginative potential.  If it did not, we’d fail to engage with anything else.

The essence of autism – indeed the origin of the term – is the behaviour that presents as a kind of isolation.  When Jenny was diagnosed it was usual to describe autistic people as being ‘locked in their own world’.  This is not generally a useful description, but autism often presents with a need for a degree of isolation or detachment – but all of us require that too.

One way to engage with autism is not to see it as a condition defined by isolation but by exaggeration.

Tbox 6 mixing deskPerhaps the most useful analogy in this respect, is to imagine a vast mixing desk of the type found in recording studios. If we visualise thirty channel faders pertaining to different aspects of our minds, each human being will have them set to different levels. Usually they stay at those gradations though we may boost or reduce them at times.  For autistic people some of the faders are positioned unusually high or low, and some may be very stiff, perhaps even stuck, and others in true Spinal Tap fashion, are turned up to eleven.

This may all sound a little digressive but considering autism this way makes it less confusing. The principal problem when living with an autistic person is that they respond to an abnormal degree when encountering normal things. Identifying which stimuli trigger the responses is immensely helpful in planning to avoid, or attempting to curtail, the undesirable consequences.

Tbox 7Autism is only one part of the puzzle of Jenny.  She has significant learning difficulties and the epilepsy may still be there, held at bay by medication.  Her perspective is an intricate and unconventional one and hence education and a route into a safe and satisfying life have been constant struggles. This is true for all parents of children with complex needs. Our experience shows that there is light at the end of the tunnel.  There also tend to be other tunnels at the end of the light. You have to be prepared to push and fight.

The struggle teaches you acceptance. The autism is not going to go away; you have to develop strategies for dealing with it.  Meticulous planning helps, and pragmatism must overrule all other preferences.  This is not only true for parents.  Jenny has two younger siblings.  Her autism undoubtedly influenced the people they became and, despite the many drawbacks that interfered with their childhood, they each claim that the effect on them was ultimately positive.  They learned, very early, the importance of acceptance, empathy and tolerance. Their perceptions of perception became central to their outlooks.

Tbox 8Another benefit of having a disadvantaged child is that it destroys any ambitions you may feel inclined to impose on your offspring.  Small and very ordinary achievements become landmarks of mammoth significance. The awareness of the complexity and fragility of the normality we take for granted is heightened, as is the appreciation of the miraculous in the ordinary.

All parenting is a puzzle, but supporting a child whose perception and predisposition is so very different from one’s own brings unanticipated difficulty.  There are more pieces, some may be missing, and the picture on the box lid is probably wrong.

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Jenny has matured and some of her interactions with the world are more moderated than they used to be.  She has conquered her fear of ferns, but not of thunder, fireworks or balloons.  She no longer has unique individual names for each of her fingers. She remains obsessed by a coven of soft toys that she labels as ‘the friends’ and on whom she frequently lays the blame for her own pleasingly cunning misdemeanours. She is blissfully oblivious to everyday perils, from crossing the road to upsetting Putin.

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Jenny does not live independently, but she does have a home distinct from the family base and where she is comfortable in a community, well-supported and understood. The long term always holds uncertainties, but that’s true for all of us.

~

[1] NAS website

[2] Autistic Alex

[3] Leo Kanner created the now discredited ‘refrigerator mother’ theory.  For the seagull perspective see  NY Times Tinbergen

~~

Influenced

Jenny has significantly shaped the academic study and creative output of her brother David. He claims that “I owe my weird side almost entirely to her”.  See much more about his investigations at The Fantastic Autistic.

She has influenced a great deal of my own fictional work – probably far more than I realise. She is the eponymous Fernslayer in the story of that name in The Atheist’s Prayer Book , and quite possibly the child in The Bedouin from the same collection.  She is, without doubt, the citric kick in Ice & Lemon.

~~

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5 thoughts on “Outside of the thinking box

  1. Your powerful gift of language makes this an emotional account full of heart rending anguish and empathy. When I recall all you have been able to give to others through your work and and challenges I believe that Jenny brought out that depth of understanding and strength of character in you. You are brave beyond measure to to have lived the life you live, and you have my deepest respect. Brenda

    Like

    1. Very kind of you Brenda. Not sure about the brave bit – more bloody minded I think! Too many years ago, I learned from your literature lessons that life is unpredictable and unfathomable but also rich and rewarding: a trial at times but terrific also. Your appreciation is much appreciated. Pete.

      Like

      1. Peter I hadn’t realised you had written a piece on Jenny. Was telling mum about the lovely picture when she informed me you had also added a blog, mum and I have just read it.
        It’s very moving, and something I will share with my students that support a lot of Autistic children and young people.
        Autism is so vast it’s intersting to see other people’s perspectives.
        Thank you sharing your story 💕

        Like

      2. Thanks Lynn. Please do share it. There’s a lot of good information around these days but it does no harm for future professionals to get a glimpse of how things were in less enlightened times, and hopefully it will give them another alternative view of how to approach autism.

        Like

      3. Peter I hadn’t realised you had written a piece on Jenny. Was telling mum about the lovely picture when she informed me you had also added a blog, mum and I have just read it.
        It’s very moving, and something I will share with my students that support a lot of Autistic children and young people.
        Autism is so vast it’s intersting to see other people’s perspectives.
        Thank you sharing your story 💕

        Like

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