a webpage devoted to my autistic son
|Shaykh al-Islam al-Marifah*|
Shaykh al-Islam was born in the Autumn of 1992, the youngest of three
children. His two older sisters JM (born 1990) and LC (born 1988) are and were
never exceptional or unusual children, although LC was extremely rapid in her
early language development. However, there is a history of eccentric and odd
behaviour on both sides of his birth family. During the Shaykh's second year, family and friends became
increasingly concerned about his development, which appeared to regress. As well
as losing language, he became increasingly asocial, and an obsession
with running water led to him being banned from the local GP's surgery.
Finally, the Shaykh began to run back and forth from one corner of the living room to
the other for hours on end, greeting any interruption with screams. We knew
something was seriously wrong, but trying to get professionals to listen was
another matter and it was a further twelve months before our questions and concerns
were finally answered. The Shaykh's mum, a psychiatric nurse, began to suspect
her son had an autistic spectrum disorder. Finally, an opportunity arose to
bring forward a hearing test with the Educational Medical Officer, who was also
a trained autism diagnostician. Within 5 minutes of seeing the Shaykh, she
agreed that autism was a likely diagnosis.
He was subsequently diagnosed with
autism by a multidisciplinary team at the local children's health centre and
also later at a diagnostic centre specialising in developmental disorders.
The Shaykh's school history is a chequered one. After attending
mainstream Nursery, he
started at a local school for children with complex learning difficulties, but
teachers lacked a coherent approach to educating children with autism, and
some staff were so conceited, they were convinced they had nothing to learn. After all diplomatic efforts failed,
and after we rejected a place at a local autism unit, the matter went to a
Special Needs Tribunal. We lost, and were then forced to
educate him otherwise for six months due to a dispute with
both the school for children with complex learning difficulties and the Local Education Authority.
However, once the Shaykh started at the autism unit, it took only a year for his teacher
and educational psychologist to acknowledge our concerns
about the provision were genuine. Finally, in November 2001, the Shaykh
started as a day pupil at a specialist school for children with autistic spectrum disorders.
He was a pupil there until August 2012.
I became his full-time carer again in April 2002.
The Shaykh might be described as a person who is severely or even profoundly autistic. He has marked sensory integration problems. His can only comprehend 1-2 information carrying words within a phrase, and his academic work is below level 1, the first level in the mainstream UK National Curriculum. But he has a very strong sense of himself, and his autism is as much a world-view as it is a disability.
As one of his teachers and I concurred:
The cornerstone of our own approach to living with the Shaykh continues to be based on our understanding of autism as a social disability. Like non-disabled people, we believe that individuals with autism are fundamentally social beings, 'hard-wired' to socialise with others. However, their social development is both impaired and atypical and we therefore endeavour to interact with the Shaykh in a manner which is appropriate to his level of development, initially to build and now to maintain a meaningful loving relationship with him. Our method of choice for meeting his social needs is based on the Intensive Interaction.
The idea of Intensive Interaction sessions is to instigate and maintain simple turn-taking sequences of shared attention with the Shaykh. These sessions provide him with quality one-to-one time that he would otherwise find difficult to access due to his limited and atypical expressive language. A communication partner seeks to “tune in” to him in a highly responsive manner using imitation and copying. Intensive Interaction involves all senses and all routes of communication, including voice, eye contact, gesture, facial expression, proximity and body language. The Shaykh’s interactions are repetitive, and his vocalizations and gestures and physical movements often draw on an evolving but narrow set of sounds and jingles familiar to him from his videos. Sessions take place wherever and whenever the Shaykh feels comfortable – which can mean almost anywhere, anytime, providing the Shaykh is with someone he knows is willing and able to respond to him in a way he enjoys. More than anything, sessions must be fun – the communication partner and the Shaykh should both thoroughly enjoy the experience!
The Shaykh's interest in videos allowed us to draw on the work of Fahri and Fern Zihni, a video teaching method which helped build his vocabulary and teach simple personal skills and play. However, adolescence saw his range of interests shrink as he asserted greater autonomy over his own life, although his love of videos has continued and remains as passionate as ever.
The Shaykh is now an adult and lives in a small community of people with autism, where he is cared for by specialist staff. He still visits his old home regularly. He is mostly a happy young man, who has matured considerably over the last few years. He treasures the friends who accept him as a fellow human being, rather than treating him as an 'other' - whether that 'othering' is dressed up as sentimental do-gooderism or social disdain. Such friendship is only possible, we believe, where people strive to make sense of and fully acknowledge the Shaykh's identity as an individual with autism whilst respecting his dignity as a person.
(1) Ecological methods: educational and therapeutic interventions whereby skills are taught in a meaningful social context using techniques appropriate to the age and cognitive ability of the learner.
* For reasons for confidentiality and safety, we have decided not to use
our son's real name on this website.