Lily has a diagnosis of autism, hyper activity disorder and learning disabilities.

She is a fun, happy, inquisitive, and affectionate individual who has just started an additional needs high school. She speaks (reluctantly) in short bursts, favoured phrases or single words and can read some words, but is still unable to write her name independently or understand counting in any meaningful way. She can swim and ride a bike, she loves her dance class and cooking. She loves wrestling with her brother and adores her big sister, her pets and watching You Tube clips on her IPad. She still needs some support to dress, wash, remember to go to the toilet, stay on the pavement, not run away or grab other people/ things when out.

We received a diagnosis of autism when she was 3 1/2, which confirmed what we already believed.

Despite having accessed all support on offer through the learning disability teams and early intervention systems, Lily was making little or no progress and behaviours where becoming harder to deal with as she got older and bigger. The effect this had on us was devastating and the feeling of failure on every level surrounded Lily and our family. After 4 years in the special education system she was still unable to follow basic instructions, compliance was negligible and she had a tendency to run away, putting herself and others in danger.

I heard, through other mothers, that a new charity had started working with autistic children on behavioural and communication issues at home. By comparison, the effectiveness of the work Tailor Ed began with Lily through using applied behaviour techniques to support us at home, has had a measurable effect; in teaching her first to sit at the table at mealtimes, beginning with small amounts of food and short periods of time – until we were able to build up to sitting for a whole course. We have worked on going shopping, dressing, toileting, washing, drying, naming and requesting items and following simple instructions (like Stop!), and sitting safely in the car to name but a few. All have been taught by taking the relevant data to establish where to begin the teaching, then breaking each activity down to manageable actions which are slowly built up as she masters each stage.

The ABA approach is the most effective way for her to learn any skill.

Lily’s behaviour can be challenging and she requires a clear and systematic programme to motivate her, replace negative behaviours with positive alternatives, and give her the correct tools to learn. As her communication skills have improved, so her challenging behaviour has decreased which means we are less isolated. This has had a notable effect on her self esteem and happiness and therefore the well being of our family. I have struggled to run an ABA home programme out with school hours for the past four years. This has entailed short sessions squeezed into our home, usually before dinner and bed time, which is woefully inadequate to her needs. Finding and keeping good ABA therapists is a constant struggle and has cost me a small fortune in consultants, training and fees.

Many families struggle to afford and maintain home programmes.

For most therapists at present, short hours required after school does not hold much future. Therapists tend to be undergraduates gaining experience before moving on with their careers. Many families struggle to afford and maintain home programmes. When I hear of the progress that children with similar ability levels are making, through attending ABA schools in England, and other countries, or those able to run full time home programmes, it is clear to me that ABA is the most effective way to teach children with autism and needs to be an affordable option for Scottish children as well.

At the special school Lily attends, she learns some social skills because she is with peers, but struggles to access the curriculum through the standard approach taken within the present system. School staff have been supportive of the work done at home and acknowledge how importantly relevant and effective it is to Lily’s advancement in life. Many teachers have taken the time to come and observe and get involved with training sessions in order to understand the techniques.

Lily will never drive a car, she will never go to university, she won’t have a family of her own, but she has the potential to learn to manage her personal care, live with support as part of society, have a simple job and be valued as a member of the wider community. Without the relevant education she may instead spend her adult life in a care home, further isolated from, and a burden to, society. There are many children in Scotland, like Lily, who deserve the right to Applied Behaviour Analysis as an evidence based, educational approach, which allows them access to basic human rights and helps them to reach their full potential.


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This article has 1 comments

  1. Carole Reply

    I am Lily’s paternal grandmother, and as I live in the Midlands, I only get to see her two or three times a year, so there is a remarkable improvement each time I see her. She is the most responsive, happy and cute girl with so much affection when she sees me, I end up squeezed and hugged with love. Her twin brother is amazing, and there is a very close bond between them, although he pursues his own interests and education.
    Obviously, as grandma, I feel like spooling them both, as I see them so infrequently, but it has taken me a long time to understand how I need to interact with Lily. I often get it wrong, BUT as on outsider, I wonder how on earth her parents cope 24/7 but I see as a loving caring family they do, between all of them without fail.
    The concept of Stoa school, is a necessity for families like Lily’s and I cannot praise Guri, and Dave enough for all their the hard work, time and effort to get this amazing worthwhile project underway. Also of course, all the folk supporting them both by being physically involved and by donating financially. And well done Dave for your Lands End to John O’Groats cycle to encourage donors! I wish Stoa school and all who could benefit from this, especially of course my wee Lily, (of course!) all the best for your success! X

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