What SPLD Means to Me

Compared with other conditions on the autistic spectrum, Semantic Pragmatic Language Disorder is one of the least known compared with its more famous brethren, Asperger Syndrome, ADHD and classic Kanner type Autism. Persons may have SPLD alone, or semantic pragmatic impairments may co-exist with other autism spectrum disorders.

This account focuses on my experience with SPLD. I hope you find this useful and interesting.

Stuart Vallantine, October 2005.

The Early years

I was born on June 16th 1979. My birth was normal, despite arriving two days late. I emerged at three o’ clock in the afternoon. Being nine years before all day drinking came to England and Wales, this was a most awkward time for my Dad, as he couldn’t go to the pub and celebrate.For the first two years, most of the developmental milestones were achieved. This had changed in 1981.

After uttering the usual early words, this had ceased. All interaction was reduced to pointing at things, and dragging my parents to my requested object. At other times, I screamed. From that point, I also had sensory issues, mostly dull repetitive noises such as the hum of an amusement park train ride. In these situations, I covered my ears. In crowded stores, I screamed, and several people assumed I was being mistreated.

Another legacy from this was a sense of order. I had (and still have) no problem with travelling to new places. What was more upsetting was finding that the driver had taken a different route to that of the outward journey. However, I liked travelling on public transport, despite the potential distractions of engine noise and chatter.

By 1982, I was (without thorough diagnosis) labelled as “autistic” and “hyperactive”. From then on, this led to numerous labels being floated around and my parents being blamed for this situation. I had hearing tests for deafness and was referred to specialists from my local clinic to Manchester Polytechnic. By 1983, my speech had returned. I had problems pronouncing certain letters, which were “F”, “M”, “R” and “W”, and certain words. “Fish” was a problematic one.

I started play school in 1982 – 83, attending in the mornings. My favourite area was the painting table. Whereas most children ignored the newspaper used to cover the tables, I was most interested in the newspaper itself. I often read the TV listings and the horoscopes, rather than trying my best to dab paint on Russell Grant’s column or ITV’s prime time schedule. From there, my early scribbling began.

This continued in nursery school in 1983 – 84. I started at Yew Tree Primary School, Dukinfield, attending afternoons then mornings. I drew the map of the United Kingdom from memory – at nearly five years old. In nursery school, I was seen as “naughty”. I often wandered around the open plan classrooms, and saw little interest in anything other than solitary activity. Meanwhile, speculation continued over the “right label”, with trips to a local clinic for hearing difficulties and assessments continuing. This came to a head on the 17th September 1984, where I was referred to a clinic in Hyde Hospital.

That Monday afternoon, I was placed under observation and assessed on my play skills and interaction. A “willingness to communicate and also a level of conceptual organisation” to my play skills were stated within the doctor’s findings, which made this “quite difficult to sustain a diagnosis of an autistic spectrum disorder”. He also stated the lack of any significant delay in language – despite being mute for two years from 1980 – 81. With the diagnosis “primarily a language disorder”, I was statemented. From January 1985, I had changed classes.

From joining the lower infants class, I was moved to Bay 8, the infant school’s special needs class.

The Road to West Didsbury

My time at Bay 8 was the first part of a 2 year transition period from my local school in Dukinfield to a specialist school in West Didsbury. This period included three months in the junior special needs class, Class 9.

In both classes, there was a mix of pupils with hearing difficulties and behavioural problems, as well as those with moderate learning difficulties. Bay 8 covered the infant department for the full three years. On some days, pupils integrated with the mainstream classes which were designed to improve interpersonal skills as well as academic prowess.

It was in that period my long term obsessions of buses and trains began to consolidate. I found joy drawing buses and trains, and riding on public transport during the school holidays. At that point, I developed a long term interest in Greater Manchester Transport, and their Leyland Atlanteans in the white, orange and brown livery. A trip to the Museum of Transport in Cheetham one Easter in 1986 fired this enthusiasm further.

By the start of 1986, my parents received details of my forthcoming assessment. After battling for the last two years to find the right school, their wish was granted. The journey involved a 30 mile round trip, which didn’t bother me, having clocked up enough mileage by the age of five on trains to South Wales and Scotland. On Tuesday 22nd April 1986, I started a four day assessment programme at Ewing School in West Didsbury. As well as participating with the normal class routine, I had further assessments, using the BPVS (British Picture Vocabulary Scale) and the TROG (Testing for Reception Of Grammar) test batteries.

From these four days came the answer. What was noticed over the four days were my drawing skills (which were well advanced for a six year old) and my memory (which was deemed as “photographic”). In the end, I was diagnosed by the age of seven with Semantic Pragmatic Language Disorder.

By the 5th January 1987, I joined Ewing School in West Didsbury, after nearly two years in special needs units at my local primary school.

Destination Didsbury

The start of January 1987 saw the beginning of three and a half happy years at the Didsbury special school. Within Ewing School, unlike most schools, teachers, apart from the headmaster and deputy headteacher were on first name terms to the pupils. There were four classes; Reception, First Group, Middle Group and Upper Group, among the school’s fifty-five pupils. Unlike conventional schools, a class of sixteen pupils would have four teachers, rather than half a teacher with the same number of pupils. At some points of the day, there were individual speech therapy sessions, with one of the four teachers.

Each class was split into smaller groups consummate with academic ability and functioning. The first group was split into five sub groups, with each one a colour. I started in the second highest sub group, till I joined the highest of the five groups a month later.

As at my previous school, I enjoyed the more solitary activities of playing with Lego and painting. Computer usage was restricted to lessons, which I most enjoyed. Group activities included a weekly environmental visit, to a park within a short drive from the school, and tea parties on Friday afternoons. The weekly environmental visit for me was the high point of the week, as this included travelling and walking. Sometimes we were allowed to let off steam and go to a play park near the end of our trip.

My weakest subject was PE. From the age of five, I was unable to catch balls, having problems trying to calculate its eventual destination. I was reluctant to jump off vaulting horses, and (sometimes) roll over, with relative ease, compared with my fellow peers. This was also case with swimming lessons, which took place on Tuesdays at the nearby Withington Baths. At one point I had extra lessons at Lancastrian School on Mondays, in a hydrotherapy pool.

On the 26th June 1989, I joined the Middle Group. Whereas the first group timetable devoted afternoons to play, the middle group timetable was designed with transfer to the Upper Group, or mainstream comprehensive education in mind. This meant more serious lessons all day, with some days for arts and crafts, the environmental visits and the afternoon tea party. The outings became more analytical, with some interplay between the outing and current topic. For example, one trip to Formby Sands in June 1990 included related topic work on sand dunes and similar natural history. As with the First Group, there were still the individual speech therapy sessions.

On leaving Ewing School on the 20th July 1990, I left West Didsbury, ready to return to mainstream education after a five year gap. I left Ewing for All Saints R.C. High School, with a greater appreciation of the countryside, brought about by weekly outings, and a marked improvement in speech.

Transition to Mainstream Education

I joined All Saints in September 1990, after spending one day there in a July 1990 Induction day. The main advantage was a much reduced travelling time; the school being a short walk from home. The most obvious difference was a more serious regime, with emphasis on being able to gain good grades in my GCSEs five years later. Within the space of three months, I transferred from an intimate school with 55 pupils to one with nearly 700, and classes of 27 as average.

My first year saw great progress handling the schoolwork, considering the jump from special school to a mainstream comprehensive. I had done well in most subjects apart from maths, where problems came from understanding some of the questions. Special needs support came from a support tutor, who attended certain lessons, such as maths and music. She was my support tutor for the full five years. Further backup came from the special needs department. As opposed to segregated special needs classes, the emphasis was on outreach provision.

For four out of five years, I had problems with verbal bullying. This seemed to disappear by Year Eleven, when GCSEs became the main focus point. As well as name calling, some had great delight in moving clothes off changing room pegs before and after PE lessons. From Year Eight onwards, I had problems coping in lessons with freer organisation, such as PE, music and (despite being my favourite subject) art. Teasing led to lapses in concentration, eventual upsets. From 1992 – 94, these were denoted as possible causes for concern in my reports, despite good class work and homework.

As with my first few years of compulsory education, PE remained a weak subject. Despite enjoying some sports such as cricket, I was still pathetic on the vaulting horse and beam apparatuses, was like a headless chicken in football, and set new standards for school athletics, with the staggering throw distance of one metre in the discus! By 1993, I took up swimming, taking lessons at a local baths opposite the school. This was an arrangement I most enjoyed.

Peer relationships

From 1990 – 95, I never thought of myself as having SPLD, and thought of myself as being Stuart Vallantine. This won me both some respect with fellow members of my form, and jealousy from fellow pupils from other forms, as well as those within my form. In fact, I never really knew about it properly then. All I knew at this point was that I went to a special school, and was placed in special needs units within a mainstream primary school. I didn’t have friends outside of school hours, whom I played with, and those who were friends during school hours spoke to me as I wandered around the playground. For some, I was a source of entertainment. For others, I was the person who knew the exact date when Coronation Street first started.

By fourteen, it seemed like the done thing to take up smoking and “go with” someone. I still subscribed to theory of finding someone with like minded interests instead of sex appeal. My definition of “going with someone” was walking around the playing fields. I detested smoking, due to the smell of nicotine and the price of cigarettes. I also found gaining an interest in football helped, with a phase of rattling off Manchester United players past and present. This culminated in me supporting Stalybridge Celtic by the 26th November 1994. I have been an avid fan of them since.

I got on better with older pupils than those within my year and staff members. During break times, I preferred to visit the library or the computer room, to borrow books, or dabble with paint packages on Acorn Archimedes computer systems. On some days, I was an avid member of the junior choir, and sang at prizegiving ceremonies and concerts.

Transition to further education

As well being my GCSE year, 1995 was a pretty tough year, in terms of transition. At some point in March, there was some confusion over my future. One report forecasting low grade predictions, led to me shunning early plans to consider full time further education. After five years, I decided to leave All Saints. Lured by the carrot of a weekly wage and the stick of day release education, I decided to take a Careership in Electronics. This was met with derision by some members of staff. One camp favoured me staying on at the sixth form. I favoured the compromise option of the Careership, feeling the need to break ranks with my then current school. Prior to joining, I took an assessment test, which I passed.

A third force suggested moving to Tameside College of Technology and going full time. The suggestion was participating in what was known as a “Vocational Choices Programme”, designed to determine my future career destination, with optional units and specialisms, plus Basic English and Maths lessons.

I left All Saints with most GCSE grades being higher than expected. In one subject, I was expected an E and gained a B. Prior to getting my results, I was in the middle of my careership, deciding on which option to take. The two I was most interested in were office administration and electronics. I chose the latter, due to the option of taking the higher BTEC National option rather than the NVQ. The other reason was to stay with my fellows from the electronics course, whom I had enjoyed the craic with better. This was to come unstuck in later years.

There was little to do besides soldering and waiting for a suitable placement. Additional support was restricted to basic numeracy and literacy outreach provision. I looked forward to the day release sessions at college, due to having something worthwhile to do. The course focused on electrical and electronic principles, applications, logic tables and creating the odd circuit board. The first year was the most interesting part. Within that year, I showed promise.

By April 1996, this was to change.

Upheaval

The period 1996 – 98 was seemingly a permanent revolution. Firstly, my youth training provider was moved wholesale from its own premises in Ashton-under-Lyne town centre to Tameside College, who also administered the programme. One part of me was happy, due to the improved studying facilities. The other part of me was unhappy on ideological grounds. From 1996, we seemed to be the Cinderella department, as staff didn’t know what to do, due to the transition involved. Apart from my BTEC National coursework, I had even less to do, and started getting bored. This led to a greater intensification of my obsessions, mainly public transport and art.

Despite increased I.T. resources, and hopes of good progress from the first year, I had a terrible second year in my electronics course. Frustrated with the lack of bias towards computer systems, and being without a placement, I decided to change direction. A change of tutor was equally unhelpful. It was claimed some years after college, by a fellow former student that I was “misunderstood” in some way.

In February 1997, I finally got a placement; with seven months left of my two year training period. This was an administrative position, within the college’s engineering department. During this period, I also discovered the Apple Macintosh, Adobe Photoshop and Illustrator, and Quark Xpress, as well as enhancing my skills with Windows 3.1. Part of my duties included helping ‘A’ level students with Windows 3.1 and Lotus Freelance Graphics. In September of the same year, I began a part time course in Desk-Top-Publishing, to NVQ Level 2, which I completed in June 1998. In September of 1998, I started a two year course in Media: Communication and Production, which was more successful than my previous engineering course. It seemed better working with creative people, Apple Macintosh computers and hand held video cameras. I also enjoyed the research based coursework.

Despite a promising seven months in 1997, I left jobless. I still kept active doing part time courses and drawing. Increased job hunting activities also gave me a chance to gain further familiarity with public transport, particularly bus routes for job interviews and jobcentres within Tameside and Manchester. In 1998 came a Fairy Godmother, in the form of New Deal. This led to some interview skills courses and paid employment. From February 1999, I joined Groundwork in Tameside. One good thing was being able to fit my existing media course around my position. Out of this, I gained further expertise with computer systems, mainly the Microsoft Office programmes and the latest edition of Windows. I also gained some experience working with other people.

Originally, I was to join Groundwork through the fourth New Deal option, the “Environmental Task Force”, which conjured up images of digging canals. I was office based, and did some internal and external publicity design, for distribution to community group. I was a popular member, due to my personality. At one point, they couldn’t think of a position, apart from the fact I was “Stuart”. It was during my time at Groundwork they “knew” me for my quirkiness. One person had known me from my previous placement on my Youth Training programme in 1995.

I was known for my illustrations and some design work with the Prince’s Trust Volunteers franchise they held. I also took photographs and designed slide shows. Another was my memory for recalling information.

Sadly, this only lasted a year, as the turned corner became a roundabout. Back on the dole, I kept active with part time courses and some voluntary work. I returned to Groundwork in September 2000, again under the auspices of the Government’s New Deal. My second stint saw me return to similar duties, with one addition, a new library. My main role involved running an environmental library within Groundwork Tameside. This was originally a permanent position. Funding issues put paid to this. At the time, one person thought I had Tourettes’ Syndrome. Another person thought of me as being “autistic”.

My second stint at Groundwork led to joining a 13 week Prince’s Trust Volunteers course in September 2001. After designing publicity for most of my second stint, I decided upon taking the 13 week course. I enjoyed the community project side of cleaning a forgotten area of a local park, which was a change from an office chair. I finished my PTV course with a better CV and improved social skills.

Communication and Social skills

Despite successful completion of my GNVQ in Media, and 13 week Prince’s Trust Volunteers courses, I didn’t quite get the positions I hoped for. The main (and most fulfilling) advantages were improved social skills. I became more outgoing. I knew more about different writing styles and communication methods. When I was younger, my early language included pointing, before stunted speech development superseded this. This was remedied at Ewing School. My later years meant more advanced “rules” besides pragmatics and general chivalry.

In December 2001, I attended what later became a three-week long programme on interview techniques. Ironically, during this period, I had an unprecedented number of job interviews, with two interviews in one day in some instances. It was during then I learned about deportment for specific jobs, how to open and close interviews and maintain eye contact. This I found the most difficult, as in some cases I maintained a “thousand yard stare”. In others, I was distracted by the view ahead of the interviewer rather than the person himself or herself. I had prior to them (and even after the courses) said things which were out of term or irrelevant to the position. I had even shook before (and sometimes during) the interviews, rocking. Even the persons at the interview workshop couldn’t understand my ratio of interviews to rejections, despite presentable CVs and immaculately turned out application forms.

At this point, I had ample experience, and got to the interview stage for sixty per cent of applied positions. Yet my situation with interviews was the reverse. I had few problems with mock rehearsed interviews, but froze during the real interviews. I didn’t think much about eye contact, and seemed more comfortable listening to people, with my head away from them, like a radio broadcast. I felt better looking to the left or right of their face, as with dogs or cats.

Though proficient with the basic skills regarding pragmatics and language, I have on odd occasions some of the SPLD characteristics. These are more intensified in stressful situations, or if I am talking on autopilot mode. After years of being told about “butting in” being “bad manners”, this sometimes surfaces, when there is something I had just thought of. For example, if my parents are conversing, I would butt in with a suggestion of my own or something else some distance away from their conversation topic. This also happens most frequently, if for example, another person is watching his or her favourite soap, and the response seems irrelevant and out of step with the viewer’s concerns. Another characteristic is pronoun reversal. For example, I have confused “here” with “there”, which mainly happens when speaking in autopilot mode (this tends to happen in social situations), despite having some conception of “here” and “there”.

A further issue is changing conversation subjects. It has not been uncommon for me, even now to stick to the same subject of conversation for hours, days, or even months, again to the detriment of my relatives and peers.

Asperger Syndrome?

The start of 2002 saw the last two weeks of my interview techniques course. The final day ended with a mock interview. I was assessed on eye contact, vocal delivery and use of body language. During the mock interview, my eye contact was poor, and vocal delivery could have been more confident. My use of body language was virtually non existent.

A word which was last heard twenty years earlier reared its head. Though I was regarded as fairly normal by one member of staff, one member couldn’t exactly place my characteristics, and noticed some differences. By February, that word was “autism”.

After participating in college courses without additional support and holding temporary subsidised positions, I transferred from New Deal to my Disability Employment Advisor. This wasn’t my first meeting, having first met her in February 2000, following an earlier referral, after my earlier stint at Groundwork Tameside. My main aim was to find gainful employment or work experience within the media industry, following my previous college courses. This came to naught, due to breakdowns in communication, and greater uncertainty. One advantage of this period was greater intensity of my artistic endeavours and transport and architectural obsessions. I still kept busy, participating in the Millennium Volunteers project, helping a local theatre group to beef up their publicity design, such as tickets and show posters. I completed 200 hours, and was presented with the certificate in March the following year.

The summer saw my mother borrowing Tony Attwood’s book on Asperger Syndrome. This was recommended to her by a fellow colleague. My mum started reading, but within days, I started reading and was amazed. I was able to identify with most of the material, triggering a flood of early memories. On several occasions, I thought “that’s me”, “I’ve been there” and “help!” It seemed like the answer, having read recent reports of Semantic Pragmatic Language Disorder coexisting with Asperger’s syndrome, as well as without. Further books were read on this subject and similar autism spectrum disorders. I also realised a distinct lack of information on SPLD in book form, other than a few paragraphs in Tony Attwood’s book, and Lorna Wing’s primer on the autistic spectrum. A.S. seemed a perfect fit, and the answer to twenty-three years of finding an answer.

The 28th November 2002 was the watershed. On the same day, I had an appointment with a representative from Prospects, the employment agency sponsored by the National Autistic Society. By coincidence, my auntie read an article on Asperger Syndrome from a colour supplement, prior to a dental appointment. On reading this article, she immediately thought “that’s Stuart!!” I was relieved to find some form of answer after 23 years. Was that the answer?

Realisation and Self Discovery

After that day, I found my peace. All of a sudden, I was interested in how I was at five. I became more able to disclose my differences rather than ashamed. I realised how I was going wrong trying to be like the “rest”. I also became more creative. As well as drawing, I diversified into writing poetry, as an extension of my visual work. This had a knock-on effect in aiding self disclosure.

Less than a month after, I received further good news, in gaining my first ever unsubsidised paid job, with my present employer. This came after an interview for an administrative position, which became a technical position, after two assessment tests. By the 2nd January 2003, I started to gain familiarity with Manchester bound buses to work.

I continued to draw and write poetry outside of work hours, using the tedious bus journeys as one excuse to do some writing. In June of 2003, I started getting involved with a newly opened art gallery in Stalybridge, who were introducing live poetry readings with local poets and songwriters. These took place in open venues during the summer months and a local pub in the winter. A writing group was formed two months later, which I was involved with from the start. In early 2005, my group released an anthology, of which I contributed seven pieces, and designed the front and back cover. This cover included a photograph of the Stalybridge area, and one of my own original drawings.

The early part of 2005 saw me taking steps towards an official diagnosis of Asperger Syndrome or similar developmental disorder. Having read of persons with Semantic Pragmatic Language Disorder having other autism spectrum disorder – diagnosed, undiagnosed or self diagnosed, I thought of seeking a professional opinion. After 90 minutes worth of consultations, there was no official diagnosis of A.S. or similar, with “autistic cousin” status the answer, alongside my 1986 SPLD diagnosis. This left little concrete answers, and some degree of uncertainty.

The Present and the Future

In the last year, my soul searching continued, as I decided to find similar “Stuart Vallantines”, and information on SPLD and similar disorders. I had since become more aware of myself and SPLD. In work situations, I am appreciated on account of my differences. The main facets are that of an elephantine memory; being able to recall “useless” things like 1980’s music, previous Stalybridge Celtic matches and bus numbers of the Greater Manchester area from 1973 onwards (for example, with 350, the current Ashton-under-Lyne to Mossley Hey Farm route, and the former Hyde to Newton Shaw Hall Circular service).

In 1986, I bored my parents and fellows stupid on public transport. Nearly twenty years on, this service continues, albeit with commuting weary colleagues on the joys of the Leyland Atlantean and Class 40 diesel locomotives. One advance on 1986 is a sense of humour. Nearly twenty years ago, I couldn’t understand most jokes. Sometimes, I laughed when the canned laughter laughed on some third rate sitcoms. A year later, I could tell them, though not understand them, nor find meaning. Several joke books put this right by the mid 1990s. Now, I tend to be the person who makes the jokes.

Even now, I can talk about one subject, and still need to be prompted to change the subject, if I continue too long (mainly with the areas I am most familiar with). This too is also true with my hobbies and interests. Given the time and place, I would probably continue to draw, write, or use my computer without due regard to mealtimes, bedtimes and other engagements. Again, I need to be prompted, because my focus on that subject may be too intense.

Compared with twenty years ago, I have improved in some way on my pragmatics, following my time at Ewing School in 1987 – 90. As stated before, I sometimes butt in and say things which seem out of term without thought. Sometimes, I have said things with about the same tact as a brick. I spend a fair amount of processing time hoping I don’t say the wrong things, or offend anyone.

Work has given me new challenges besides the obvious issues of doing a good job. One is punctuality, hoping that my desired bus and train connect flawlessly and give me ample time to transfer from the station to the desk. I get worked up if my desired bus or train is running late or is overcrowded. Work has brought the worst excesses of my desire for precision and smooth journeys to the fore. I used to get the bus all the way to work, till I discovered the joys of fast train journeys. As the rush hour traffic and inconsistent journey times wound me up (resulting in patchy performance in the office), the train – even with delays and overcrowding – still came out on top. The other is sensory issues, which I thought were eliminated by the 1990s. These include weekly testing of the fire alarm, which still makes me jump. The others are smells from a sandwich shop below causing some distraction provoking gag reflexes, and noisy pubs. In some cases, I feel frozen out and lost in such establishments. The other (though entirely unrelated) thing I dislike is having to shout to the person opposite, competing with other conversations and piped music.

I don’t see myself as entirely flawed due to consequence, nor do I wish to copy other persons, trying to fit in. In the past, I found these moves were having an opposite effect, both on themselves and me. Since 2002, I had realised this; partly responsible for this change are my creative work. The other was a tough five years of temporary jobs and unemployment, despite the relative freedom of part time college courses.

One person stated in April 2002 about me: “What I like about you was that you were different and that they didn’t quite understand you”. From that point, this started to sink in.

I started to see myself as Stuart Vallantine: a bit daft, creative and outspoken, and likely to go on a bit.

I am proud to admit that I didn’t like PE one bit
And that I’m far from being average

My general knowledge and elephantine memory are all part of me. I’ve tried too long hoping to follow the crowd like other people I’ve seen around. I’m happy being myself, instead of asking “Am I normal?”

I just wanted to fit in; when I tried, my chances were thin,
As my mindset is different within although I look average like the rest

They couldn’t cope with the knowledge, my outlook, direction and probably emotion.
After years of rejection and self-reflection, I’ve found myself at ease
Celebrating instead of berating my differences

This for me is my clearest intention.

 

© 2003 – 2010 Stuart Vallantine

(Originally written on the 10th October 2005, republished on ‘East of the M60’ on the 12th January 2010).