All About Rory

by his parents

Our lovely son Rory was born in April 1997 when his sister was 21 months old.

We started having concerns about Rory when he was about 17 months old. We now realise those concerns were the first signs that Rory was autistic. We saw a consultant on Rory’s 2nd birthday. Despite indications then that Rory was on the autistic spectrum, it was 9 months before we got a formal diagnosis. That came in December 1999 when we were told that Rory was on the severe end of the spectrum.

During those 9 months (full of emotional roller coasters) we started to learn more and more about the mysteries of autism (and we’re still learning!). We immediately started 2 important interventions

1:1 Music therapy - which Rory continued for 2 years and where we first saw a glimmer of hope in terms of Rory learning to communicate

Gluten/casein free diet. - this diet is one of a number of bio medical interventions that have been shown to work for some people on the autistic spectrum. It certainly helps in Rory’s case! For more info try http://www.gfcfdiet.com/. Another excellent source of information about wider bio medical issues is Allergy Induced Autism. Their website is www.AutismMedical.com

During our research we came across a consistent theme – there are massive benefits to early intensive intervention. So then, we were “lucky” weren’t we to have such a formal early diagnosis (2 yr. 9 months compared to an average of 4 - 6 years). But we soon realized that we weren’t going to be offered lots of intervention – indeed it would be a further 9 months before Rory would be considered for a place at a special needs nursery.

We made the decision to start an intensive therapy programme for Rory – in January 2000 we went live with ABA.

What is ABA?

ABA (Applied Behavioural Analysis) is a now well-established method of teaching autistic children. It was pioneered by Dr Lovaas in the 60’s but has since been developed, modernised and refined.

It is based on the principle of breaking tasks down into small manageable stages that are repeated through 1:1 teaching until mastered. Prompts – verbal and physical e.g. hand over hand, are used to ensure success. Prompts are faded as soon as possible. The child receives reinforcement for efforts and successes. Reinforcements are gradually faded out as the child’s skills increase. Lack of success never brings an aversive response.

The child works on a number of “programmes” at any one time – these are set to combat the child’s deficits and build on their strengths. The programmes are based on the skills needed for daily life and for the national cirriculum.

For more information about ABA visit www.peach.org.uk

As Rory’s programme has progressed we have changed the emphasis to a particular strand of ABA. – Verbal Behaviour (VB). For more information about ABA and VB visit www.christinaburkaba.com

How it works in practice

Rory has a team of 4 tutors who, between them work on a 1:1 basis with Rory approx. 35-hours/week 48 weeks/year. They follow set programmes and targets but ensure they make learning lots of fun and functional! Rory’s supervisor visits ½ day per month to review progress and set the priorities for the coming month. We have had 2 visits from American consultants to give overall direction to the programme.

The ABA approach has worked for Rory. It is based on sound principles, which help us all teach Rory new skills as well as deal with behavioural issues. The programme is intensive - Rory does not soak up information like a sponge in the way that typical children do. He needs to be shown how to learn hence the importance of “putting in the hours”.

Within teaching hours Rory attends his local mainstream school (currently 8 hours a week). This gives him the opportunity to mix with and learn from his peers and be part of his local community. We are very lucky to have an “inclusive” school in our neighbourhood. Rory is supported in school by one of his ABA tutors - an agreement that helps in terms of flexibility and consistency.

Rory’s progress

Since starting his ABA programme and as a direct result of almost 4000 hours 1:1 teaching, Rory has made sure and steady progress. He is a happy little boy who can cope in lots of different and new situations – something not to be taken for granted with an autistic child. He still does not speak but can communicate most of his needs by using Makaton – a sign language http://www.makaton.org/. Makaton has been a great breakthrough for Rory (and us all!). If you want to learn some basic signs we would recommend the nursery rhyme video starring Dave Benson Phillips (available from Makaton)

After positive experiences at 2 local mainstream playgroups we talked to our local primary school and with their support Rory started there in September 2002 (see above). We are delighted that our little boy with his “severe” diagnosis has got this far. Well done Rory!

Like any other parents, all we want for Rory is for him to be happy and to be allowed to reach his potential, whatever that may be. We do not believe that Rory is ever going to “recover” from autism – but we do hope that we can provide him with the means to cope as well as possible in a world where people will not always be sympathetic to his particular needs.

Our special thanks go to ….

All of Rory’s ABA tutors and his supervisor for the 4Cs – commitment, consistency, common sense and creativity. You’ve made a real difference

2 excellent local playgroups and the welcome from staff and children

an excellent local school who are having a great crack at “inclusivity”

family and friends for great practical support and helping Rory to love and trust the world.

Last but not least Rory’s sister Ellie who has shown such patience, maturity and love for her very special brother.