10 Years of Autism Awareness in Kenya ….

This year we celebrate 10 years of  the existence of the Autism Society of Kenya.  We parents, founded this organisation to create awareness about autism in Kenya and also to establish services for people with autism in this country.  Prior to this, autism was never talked about, it was like something hidden away in  a dark cupboard – never to see the light of day and never to be confronted. 

Robin, my now grown up son, was the inspiration for this movement.  When he was born, there was no hint of what was to come, and the autism started unfolding as he grew into toddlerhood.  As he grew, his behaviours such as extreme hyperactivity, toe walking, repetitious and rigid behavious all attracted stares and comments, but nobody would or could say “oh that’s because he has autism” – nobody knew. 

Even after diagnosis, through a form I filled out from Dr Bernard Rimland’s Autism Research Institute, there was no educational placement suitable for his needs – hence the establishment of this organisation.

Since its inception, we have been able to put Autism on the table firmly and permanently.  Currently so many people have at least heard of it so the word Autism has almost become a household word.  We established the first autism programme at City Primary School.  This became the pilot programme and is now being replicated in other centres in Nairobi as well as in other counties.  Challenges were many – particularly funding – but also we had a hard time lobbying with the City council and the government to put autism issues on the table but I think we have made great strides in this area.  We would have done a lot better if these challenges didn’t litter our path, but we can now only move forward with the great tide of development.  We can’t go back. 

We have been able to:

Raise awareness about autism in Kenya;

Establish parent and sibling support groups;

Establish linkages with the Ministries of Education and Health and have contributed to developing national assessment guidelines for the country;

We have published two books on autism – one is on Dietary requirements and health for people with autism which is on sale at the Autism Society’s office, and the other is a Manual on Autism which also includes the assessment forms that we use in our programmes.  It was an important publication and has been distributed widely in assessment centres across the country and in units that cater for children with autism;

We established a youth programme at the City Primary Unit which is still at the fledgling stage.  It is now critically important to establish services for adults and adolescents with autism.  This is a major gap.  The children are growing up so fast and without proper intervention, it will be very difficult to cater for their needs if we don’t start now.

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EARLY YEARS ….

I remember Robin was fascinated by telephones from an early age.  I remember once, when he was two years old, the phone rang, and I went to answer it and Robin, seeing that he would not be able to get to the phone before me, ran to the extension in the bedroom.  All through the conversation I could hear baby cooing sounds and I found it hard to control my laughter from spilling out!  I remember how determined he looked as he rushed down the corridor and disappeared into the bedroom with the extension. 

As he grew, his developmental delays became more obvious.  His speech was delayed, he showed no interest in the activities that other young children enjoy – drawing, colouring, etc, and he showed no fear of danger that is typical of that age.  He used to get in strangers’ cars and he would run across the road without a care in the world!

Getting an assessment for him at that time was a great challenge.  In the early ‘90s there were hardly any professionals dealing with children with developmental delays.  When he got his diagnosis of autism, there was no information available.  My job as an autism researcher began right there.  I dug into books, old magazines and anything I could lay my hands on.  At my parent’s farm in Nyahururu, I ploughed through their collection of old Reader’s Digest magazines – they have a collection dating back to the 1960s! – and it was an amazing resource.  I found many articles about autistic children and autism societies and this really helped to put things into perspective.

In January 1995, just returned to work from maternity leave, the internet was the new buzz word in town.  My office sent me on a training course and we had the internet installed in our office.  This turned out to be an incredible source of information.  One of the things I did was send out an email to a list requesting information about autism and I was amazed to receive a lengthy letter from a lady in Kilifi who said she had been an educational psychologist with the National Autistic Society U.K.  She sent me a package of information and I then wrote to this autism society.  I read with interest the brochure that described the symptoms of autism and I just had to laugh!  Robin displayed all the symptoms.  This was the time that I understood that autism is not a generic condition.  It affects people differently.  Some children are verbal, some non-verbal, some are picky eaters and some not.  I also understood that everybody is born with their own personality and this can determine how autism displays itself.  It was an extremely interesting time for me because it opened up new doors and helped me to explore and understand, to some extent, the extremely complex disorder.  I learnt how to plough through scientific texts without cringing, I began to learn that autism is a multi-faceted disorder that affects so many aspects of the person affected – the sensory issues, the behavioural issues, and the social and communication impairments. 

I began to see Robin in a new light.  It was now easier to understand why he was so fixated on sticks;  why he had to do things in a certain way all the time;  and why he only liked certain foods e.g. fish, cooked in the same way all the time.  “Oh no!  let’s not have any experimenting with new recipes here – I only like good old honest fried fish! “ 

During my years of managing a child with autism, I have met so many wonderful children and adults with autism.  I have also read about and seen the trauma that far too many of them go through.  Many are tied to beds or chairs in their own homes – even chained to trees to keep them from running away.  Many children and adults with autism cause a lot of damage in their homes due to lack of educational and  therapeutic services.  While we have come a long way, we have miles and miles in front of us to travel before we can say “We have arrived!” 

As Autism Awareness Day comes up, we should step up the awareness campaign.  I know in Kenya, many people – especially those in the public service – will think that there is so much work to do to get development on track and there are no resources to invest in people with developmental disabilities, but I say parents of these children and adults are also tax payers and we should expect this segment of the population to be taken into account of the total development agenda of Kenya.   We are not going to be left behind to wait for the good times! 

Some Disturbing Trends in Autism Management

I have read, with a great deal of concern, of a number of incidents involving autistic children and the way their behaviour problems are handled by those who are in charge of their educational development.  Some children, even as young as 8 years, have had the police called in to deal with a temper tantrum in the schools and these officers have actually handcuffed and taken the child off to jail!  This has happened in America  and, most likely, all over the world.  I find this ironic because so many of the really good autism programmes have been developed here.  Dr Leo Kanner, who first did extensive study on autism, did his work here and so we can almost say that the story of autism began here. 

I am writing this blog to express my dismay at this  trend.  The rights of the child have been violated.  It is most disturbing because there have been several incidents like this.  I have also read posts of how some autistic people have been restrained to the point where they have died.  It is all the more shocking, because some years back (in the late ’90’s) there were similar cases and there was such a hue and cry and one would have thought that such practices would have been outlawed.  Restraining to calm an autistic person (or anyone else for that matter) has been proven to be dangerous and it is quite disturbing to see the practise continue.  It is shocking particularly when we know  that there are various behavoural therapies that can be used effectively and there are trained professionals who practice these methods – so why go all cave man?  We should aim to eradicate barbaric means of managing autistic behaviour whereever it is found. 

Here in Kenya, our organisation has been trying and is still working on it, to make autism better understood and to stop children and even adults from being tied or chained in their homes.  We are creating programmes and awareness campaigns to spread the message.

For Autism Awareness 2013, we should make a concerted effort to outlaw and stop these harmful practices whereever they occur.   Let us treat people with autism with the respect and dignity that they deserve. 

There is a Reason for Everthing …..

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Hi,  I know I put in a photo from Robin’s adult years in that post, but he still looks so adorable with his big smile!

My Run with Autism

2^nd chapter

Robin was a lovely baby, with an adorable smile and those large, beguiling eyes. He grew up into a to ddler, he passed through all the milestones – walked at the right age – he was twelve months, he sat up, crawled at the right age. The only milestone he did not quite make was the communication aspect. Before he was one year, he was saying things such as “birds in the air”, and other phrases that he heard from the lullabies that I sang to him. As he grew into toddlerhood, he was using such words as “ridiculous” . He would walk around the house saying “ridiculous” but he would not use expressions for communication purposes. If he needed some water, he would take my hand and guide it toward the water glass or bottle. My hand became a tool of communication. As he grew, he started throwing my hand towards the bottle or water. Finally, one day I just stood with my arms crossed, and pretended that I didn’t know what he wanted.  “What was that again?”  …..  “Say whaaat?” ….  “What did you say you wanted?”   After a long time, came the words .. “want water”  Big celebration here!  My hand was laid off as a communication tool and he started expressing his needs.

It’s so exciting when  a child reaches different milestones, and it is even more exciting when one knows that it has been a real struggle.  While Robin was small, many people from different professional fields, and even friends and family, concluded that each child develops at their own time, and this is true.  Yet there is a maximum time limit which, if crossed, one should know there is a developmental delay. 

One thing about Robin which dates back to his earliest years, is his great, big smile.  He has always been a great smiler.  At his kindergarten and also at his special needs school, he was always known as the happy boy.  He always was prone to erupt into bursts of laughter – very infectious.  Before you knew it, he’d have us all laughing.

At the farm!