Living with Autism

In my last article in Forum, I described the powerful effect that meeting a young autistic girl had on my life and career. Today we look at the influence of autistic children on their families and society and how we can begin to enhance their life experience and recognise the positive contribution they can make to our world.?The arrival of an autistic child is interpreted in different ways around the world. Some might see it as a test of faith in God, sent to strengthen them in the long run and many parents will speak of a transformation in their lives after raising such a child helping them to become  » better people » with a wiser outlook on life itself. ?Others may feel they have just been unlucky in life. For some life is a constant battle with ever changing parenting challenges and become discouraged especially if society is unaware and uncaring and uninformed about what autism is. ?Even though every autistic is unique with an individual personality they share a set of features that constitute a triad of impairments, namely difficulties from an early age even from birth in acquiring and appropriately using non-verbal and verbal  communication  skills. Also they do not develop effective patterns of social interaction and have a tendency to have a narrow range of intense sometimes unusual interests and repetitive behaviours. The child does not understand pretend or imaginative play for example using a piece of wood to represent a sword or plane or making dolls or toy figures « talk » with each other.?Talking with an autistic child rarely feels like a normal conversation as they will generally not be interested in your views or opinions. It can feel like listening to a boring lecture by a little professor! They struggle to understand that other people have different ideas or interests or motivations.?They are not motivated by social events e.g a human face, birthday party or friendships. Or if they are interested in human contact, they get things wrong, offend people, and struggle to fit into the family or peer group at school. Some autistic children are easily frustrated, become anxious and then may become angry or aggressive especially if their daily routine is changed in some way for example taking a different route to school. ?Many are hypersensitive to ordinary sounds or being touched reacting, with distress to household sounds like the washing machine or hair dryer or being cuddled or stroked. Visits to the hairdresser or dentist can be a nightmare.
 Others are thought deaf as they do not respond to human speech or follow instructions.?They may not complain when injured as perception of pain may be reduced. Some children can be ?gravely ill with a condition like appendicitis and yet not react in any way when examined by a doctor. Others may have a very limited or idiosyncratic diet eating only foods of a certain colour or specific brands of food  or surviving on Coke and milk and chips.? Parents worry about their child’s future ability to study at school, make friendships, get a job, become independent, cope with sexual relationships, marry and have a family. Many remain at home even as adults, still dependent on their parents. ?Some autistic children change dramatically, learn to speak and interact in more acceptable ways but autism rarely goes away completely.?Research and investment in services for autistic children and adults has expanded rapidly in some more affluent countries where one child in 100 is diagnosed as autistic. This represents an epidemic and the reasons for the rapid increase in recent decades is debated. ?Most cases are genetic but even identical twins do not both always develop autism. The many genes involved in autism are  being identified but this is a long way from saying that drug treatments will make a significant contribution towards improving the lives of autistic people.?Some  adult autistic people will not want to be « treated » in any case, valuing their different way of looking at the world as another form of human diversity that society should accept as we accept different skin colours or religious views. ?These adults will recall that many rich and talented people are considered autistic. But unlike the Rain Man character in the film of that name which often comes to mind when discussing autism in a general audience, the large majority of autistic people do not have special musical, mathematical or drawing talents. Effective parenting, training and education will always remain the mainstay of autism « treatment ». ?
The needs of autistic children and their families
?As child mortality declines in poorer and middle income countries like Mauritius, and the country recognises the rights of all its citizens and the need to invest in the education of all children, it is vital to identify and meet the particular struggles, dilemmas and needs of autistic children and their families. If not detected at an early stage as part of the new focus on preschool education these children risk failing in school and becoming an increasing economic burden to society.? Difficult behaviours in childhood, can become habits and hard to change if ignored. Mental health problems can emerge in the teenage years and autistic people are over represented in the prison population often because their « criminal and anti-social behaviour » has not been recognised for what it really is…confusion, lack of understanding of social rules and expectations. Some autistic children and adults are very vulnerable and easily lead into anti-social behaviour.? ?Yet all humans have abilities and these can be recognised and fostered. All deserve human dignity and can play a part in society, contributing in a positive way to family life and in many cases become economically productive. ?The love of parents for their children is a powerful almost universal force which can be channelled in useful ways so that they become effective co-therapists with committed professionals who like me retain a life long loving interest in understanding these fascinating children and adults.?Parents have organised themselves in many parts of the world to support each other, raise awareness, engage politicians to influence policy making and the development of services. They have created autism friendly classrooms or special schools and colleges. They have engaged with research projects leading to major breakthroughs in our genetic understanding of autism and the differences in the way that the brains of autistic children develop.
Autisme Maurice
?In Mauritius, Autisme Maurice which celebrates its third anniversary this year is proving to be a dynamic and effective parent association which has raised awareness of autism in the media and the public generally. ? ?Questions have been asked in parliament, and ministries seem ready to investigate the rate of autism on the island and the future need for good quality educational and health services working in collaboration with other partners and parents themselves. Several organisations with experience of working with autism are offering their technical and clinical or educational expertise and this is encouraging.? ?Multiple perspectives will enrich developments in Mauritius and it will be important to avoid mistakes already made in other countries and focus on a model based on a clear multidisciplinary diagnostic and management pathway which is easy for parents to understand and engage with. ?A wide range of people working with children of all ages including nursery staff, teachers, doctors and nurses need to have at least a basic understanding of how to identify potentially autistic children and refer them to relevant services as these develop.? Training on autism will be needed for staff in all schools and as part of the education programme for new teachers. ? A few trained personnel will be needed in every school as this can make a big difference to the school experience of autistic children many of whom can be in regular mainstream schools when appropriate adjustments and adaptations are made to support them both in the classroom and play ground and wider community. ?Classroom learning often does not transfer to home situations of community settings like shops, restaurants or church so an emphasis on learning and modelling of good social behaviour in the home and naturalistic settings from an early age is to be recommended. The early engagement of parents, siblings and the wider family can help them gain a better understanding of why the child behaves as he does and what they can do to promote his or her development. ? I recently came across an inspiring way of working with parents and families in Lima, Peru where the Ann Sullivan centre led by the charismatic Dr Liliana Mayo, has pioneered a fun, functional and  « failure proof » curriculum for parents and children based on mutual respect between staff and users of the service. ? The focus is on valuing every autistic child, seeing their positive potential and focussing on promoting life skills and more academic areas as appropriate including lifelong support into employment and making a contribution to society. The classroom for the Lima children extends to the whole environment that they move in and engage with on a daily basis. ? Dr. Mayo has interesting stories to tell of autistic children born in the shanty towns of Peru who ended up as young adults working in a range of enterprises. Some are able to support their families financially earning more than their parents ever did. ? I was able to see young autistic adults working in laundries, cafés and using public transport in a busy city independently. ?The centre cannot meet all the requests of banks and other businesses wanting to employ more autistic people educated and trained this institution.  They make such focussed, reliable employees! The Ann Sullivan model is being copied by several countries in South America and the centre is reaching out to countries around the world.? Good leadership, well trained staff and parents working with loving determination are vital to this process. And there are other good stories out there.? In our connected world new technology is offering new ways of spreading good news and best practice and linking up parents with each other and centres of excellence.  All can benefit from distance learning and autistic people often make good links and networks on line based on a shared interest or hobby. This new world could bring benefits to many autistic people and their families.? But the world of autism theory, research and practice remains confusing, disputed and there are many unproven therapies both medical and educational offering hope and disappointment in equal measures. No one intervention works for every child with autism and combining different techniques in an individualised education plan agreed with the family is essential. Priorities for each child and family will differ at each stage of the child’s life.? So it is important to bring all interested parties together around a table, make a national plan, understand what will work in the Mauritian context and respond to identified needs of this important and diverse population.