Tasneem Project: The Shaykh

EXTERNAL LINKS 1
. Autistics.org
. The Autism Acceptance Project
. Larry Arnold
. Autism USA (ASA)
. Autism UK (NAS)
. Autismconnect
. Autism Awareness
. ISNT
. Autism & marriage
. Good practice in education
. Autism & art
. Bruno Bettelheim Blues

. Autism and Disability:
general bibliography

. Islam, Disability and Deafness:
a modern & historical bibliography,
with introduction & annotation
(pdf)

. Islam, Disability and Deafness:
a modern & historical bibliography,
with introduction & annotation
(html)

Joel 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 Joel's second year, family and friends became increasingly concerned about his development. Joel seemed to regress. As well as losing language, he seemed to become more and more asocial. He become obsessed with running water, to the point his GP refused to allow him into his surgery. Finally, Joel 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. It was another twelve months before our questions and concerns were finally answered. Joel's mum, a psychiatric nurse, already suspected that her son had an autistic spectrum disorder. By luck, we managed to get Joel in for a hearing test with the Educational Medical Officer, who almost immediately agreed that autism was a likely diagnosis. Joel 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 Joel's primary carer. Local provision for pre-school children with autism was then very poor and I therefore took it upon myself to be Joel's teacher. Initially, I used a TEACCH regime alongside a very crude social interactive approach, and with the help of a private day nursery, Joel 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 course at the University of Birmingham (UK), where I eventually gained an Advanced Certificate in Special Needs Education. Joel has since had a rather chequered educational history. At aged 5, he started at a local school for children with complex learning difficulties, but it slowly became clear that staff viewed do-gooderism as a sufficient substitute for the genuine skills required to educate children with autism. 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 were shown to be genuine. Finally, in November 2001, Joel started at a school for children with autistic spectrum disorders. For the first time ever, we saw Joel laughing when he sets off for school - and when we ask him if he likes school, he doesn't answer NO! However, whether his current school will be suitable for Joel when he reaches the age of 16, where facilities are geared up for more able children, remains unclear.

I have not just been Joel'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. Joel 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 most of his academic work is below level 1, the first level in the mainstream UK National Curriculum. But Joel 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: "Joel 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 now 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. 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 hunting 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. Some talk of integration, but the numbers of people born with Down syndrome is now plummeting...

The cornerstone of our own approach to working with Joel 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 Joel in a manner which is appropriate to his level of development. For example, Joel 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. Joel 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. Joel's special interest is videos, but even when busy with this pursuit, he frequently walks into our study to 'chat'. Joel also interacts when we go out walking in the countryside, when swimming, when visiting his Grandmother, and in the Summer, when playing with water. This year, Joel acquired a full-size trampoline, with a safety coral, which offers wonderful opportunities for social interaction as well as being a great tension buster! Joel'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 Joel's vocabulary and teach simple personal skills and play. Joel also interacts with videos using books and objects of reference, and plays-out videos (with the video switched off), often with the aid of books and objects of reference.

Joel is mostly a happy child. 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 Joel 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.

***

Most of the above history was written before 2006. Joel is now 15 years old. The first half of 2007 was a difficult time for us all, but Joel is now in a new class and is exceeding everyone's expectations. His new skills include legibly copying a short line of text and his speech, although still consisting mostly of single words and stock phrases, is improving. He has even made a new friend - his cousin Thomas, who is just two years old! Thomas adores Joel whom is always remarkably kind and gentle in return. Altogether, Joel is a typically stroppy teenager and typically much more self-aware - and moody! He expects to be asked rather than told, and insists on having more choice over his daily life.

It seems likely Joel will remain at his present school until he is 19, but his future beyond then remains uncertain...