a webpage devoted to my autistic son

Shaykh al-Islam al-Marifah*

'But I of these will wrest an alphabet and by still practice learn to know thy meaning'
Titus Andronicus, Act 3 Scene 2

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.

By this time, I (the Shaykh's dad) had assumed the role of primary carer. This was before the days of Early Bird, and specialist provision for pre-school children with autism in our area was poor. I therefore took it upon myself to be his teacher. Initially, I used a modified TEACCH regime alongside an approach founded on the principles of Intensive Interaction, and then introduced a Picture Exchange Communication System (PECS) as part of a comprehensive SALT package to facilitate his intentional communication. Thanks to these programmes, and with the help of a private day nursery, the Shaykh was able to start at a mainstream school nursery at age 4 with full-time 1:1 support. In the meantime, I was fortunate enough to be accepted on to a distance learning course at the University of Birmingham (UK), where I gained an Advanced Certificate in Special Needs Education: Autism (Pupils). This enabled me to develop a more sophisticated approach to meeting his needs once the Shaykh was in full-time SEN education, largely through ecological(1) methods. I then went on to train as a mainstream 3-11 teacher and started work as a full-time Nursery teacher in September 1999.

An autistic spectrum disorder is a biologically-based neuro-cognitive social difference, medically diagnosed by identifying an underlying 'triad of impairments'. Arguably the most significant disability in autism is atypical social communication, particularly where generic learning disabilities present an additional barrier to coping with the world. Most neurotypical people, including some so-called 'experts', are ignorant of the social and environmental adaptations necessary to ensure people with autism enjoy meaningful access to society. Prejudice against people with autism and developmental disorders is known as neurelitism.

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.

I have not just been the Shaykh's teacher and advocate. He has been mine, too. He has taught me two great lessons. The first lesson is this. If you give all your love to someone who has a brain that works completely differently compared to most folks, if you work hard to make that person your friend, you learn that the true heart of a person is much more than anything they own, or anything they know, or the things they say, or the smart or stupid things they do. The second lesson is simply loves lesson. Children with autism who are loved are a blessing. They teach patience and perseverance, and the need for informed understanding -- the most noble of human qualities. These lessons are at heart of Autism Europe's Charter for people with autism, the Convention on the Rights of the Child, and the Human Rights Act, the principles of which I fully endorse.

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 Shaykh has a very clear agenda, and is very focused in pursuing that agenda."

The history of people with learning difficulties over the last 150 years has been one of oppression, segregation and even extermination. Unable to function as effective production units within the new industrialised societies, the learning disabled were one of a number of groups - alongside criminals and vagrants - which transgressed the social and economic aspirations of the new power elites. The 'final solution' was eugenics - the science of creating a 'perfect' human race. Sir Cyril Burt - whose ideas still influence thinking in juvenile criminology - was a leading member of the UK-based Eugenics Society. Influential in the interwar years, this group believed there was a problem of degeneracy in society. They used eugenics to argue not only for segregation of the learning disabled, but for learning disabled men and women to be kept apart so they would not procreate. It was a version of eugenics that would be used by Hitler to justify the holocaust, where the learning disabled were among the first to be slaughtered.

Birt's ideas weren't new. Prejudice against the learning disabled had already begun its assimilation into UK legislation and culture with the 1908 Radner Commission, which concluded people with learning disabilities were indeed genetically inferior. The Mental Deficiency Act 1913 and subsequent legislation saw the introduction of an inspectorate charged with tracking down the learning disabled, who were then 'certified' as 'mental defectives' and imprisoned in 'colonies' - men and women separate. Eugenics, though badly tarnished by its association with the Third Reich, is still with us. The development of technologies to screen pregnant women for foetal abnormalities - supported by iconic figures like James Watson - is evidence that scientists are only too willing to pander to popular fears about 'window lickers'.

Islam, Education, and People with Special Needs

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.

Recommended Reading
Colin Barnes, Geoff Mercer Disability (Polity, 2002)
John Clements, People with Autism Behaving Badly (Jessica Kingsley Publishers, 2005)
Simon Baron-Cohen, Autism and Asperger Syndrome (Oxford University Press, 2008)
Francesca Happe, Autism: An Introduction to Psychological Theory (UCL Press, 1994)
Dave Hewett, Mark Barber, Graham Firth & Tandy Harrison, The Intensive Interaction Handbook (Sage, 2012)
Peter Hobson, The Cradle of Thought (Pan Books, 2004)
Kathy Hoopmann, Blue Bottle Mystery: an Asperger's Adventure (Jessica Kingsley Publishers, 2000)
Barry Neil Kaufman & Samarhia Lyte, Kaufman Son-Rise: The Miracle Continues (Kramer, 1994)
Majia Holmer Nadesan, Constructing Autism: Unravelling the 'Truth' and Understanding the Social (Routledge, 2005)
Donna Williams, Autism: an Inside-Out Approach (Jessica Kingsley Publishers, 1996)

* For reasons for confidentiality and safety, we have decided not to use our son's real name on this website.

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