Welcome to the Tasneem ShaykhWiki

A Wiki devoted to Shaykh al-Islam, my autistic son.

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. 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 more and more 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 almost immediately agreed that autism was a likely diagnosis. The Shaykh 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 had assumed the role of The Shaykh's primary carer. Local provision for pre-school children with autism was then very poor and I therefore took it upon myself to be his teacher. Initially, I used a TEACCH regime alongside a crude social interactive approach, 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 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 eventually gained an Advanced Certificate in Special Needs Education: Autism (Pupils). This enabled me to develop a more sophisticated approach to meeting his needs, largely through ecological methods.

The Shaykh has since had a rather chequered educational history. At aged 5, he started at a local school for children with complex learning difficulties, but the school 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, but sadly it was not long before our concerns about the unit -- which was too small and suitable for abler children with less complex needs -- were shown to be genuine. Finally, in November 2001, The Shaykh started at a school for children with autistic spectrum disorders. For the first time ever, we saw The Shaykh laughing when he sets off for school - and when we ask him if he likes going, he doesn't answer NO! He is now a pupil in the same school's FE Unit.

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, understanding and perseverance, the most noble of human qualities. Both these lessons are at heart of Autism Europe's Charter for people with autism and the Convention on the Rights of the Child, both of which I fully endorse. The Shaykh might be described as a child who is severely or even profoundly autistic. He has marked sensory integration problems. His can only comprehend one information carrying word within a phrase, and almost all his academic work is below level 1, the first level in the mainstream UK National Curriculum. But The Shaykh has a very strong sense of himself, and his autism is as much a world-view as it is a disability. As his teacher and I recently concurred:

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

The cornerstone of our own approach to working with The Shaykh is based on our understanding of autism as an impairment in social development. Like non-disabled children, we believe that children with autism are fundamentally social beings who are '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. For example, The Shaykh will approach us, gain eye contact and make a noise or repeat a jingle taken from one of his videos. This is sometimes accompanied by a movement, gesture or even some kind of physical contact such as tapping. The Shaykh responds positively with smiles and even excitement when we meet his eye contact and repeat these sounds, jingles and gestures. Sometimes, he will respond to us if we initiate contact with him in a similar way. The Shaykh's special interest is videos, but even when busy with this pursuit, he frequently walks into our study to 'chat'. The Shaykh also interacts when we go out walking in the countryside, when swimming, when visiting his Grandmother, and in the Summer, when playing with water.  He has a full-size trampoline in the back garden, with a safety coral, which offers wonderful opportunities for social interaction as well as being a great tension buster! The Shaykh's interest in videos has also allowed us to draw on the work of Fahri and Fern Zihni, a video teaching method which has helped us build  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.

The Shaykh is mostly a happy young man. He doesn't need pity, although I am sure he would treasure a few more understanding friends. We try not to judge him, but acknowledge that some behaviours limit his opportunities and ability to meet his own needs and live as part of the community. My aim is therefore to work with him to adapt those behaviours in a way which acknowledges his identity as an individual with autism and develop his self-esteem.

But most of all, I am simply his dad.