My son Jacob was born three years after my daughter. There was nothing unusual about his birth and we left hospital a couple of days later to settle down to life as a little family. Jacob was a very easy baby. He settled into a good routine fairly quickly, didn’t cry a lot and his sister adored him.
As the months passed we noticed little things about him that were a bit ‘odd’, like the way that he liked to line up all his toys and would then lie down spinning their wheel for a long time. By the time he was a toddler it was becoming increasingly obvious how different he was to his sister. At nearly two he had no language, not even mummy or daddy, he didn’t respond when we called his name and he would do odd things like stop every time a car passed us when we were out walking and refuse to move until the wheels were not longer in sight.
He was diagnosed with autism shortly before his third birthday, an unwelcome confirmation of what we had already suspected.
As he got older many of the things that we had taken for granted with his sister became huge problems,things like: him being able to tell us when he was hungry or thirsty; him staying in his bed at bedtime; being able to buy new shoes and going to a coffee shop. Over time we accessed all of the services provided by the local authority themselves or by a charity on their behalf (e.g. Sleep Scotland.)
I can honestly say that the impact of these services on Jacob’s behaviour and learning ranged from negligible to non-existent. In contrast to this was the help we received from Tailor Ed, a small Edinburgh based charity that works with children who have an autism diagnosis, using Applied Behaviour Analysis based strategies. The best way to explain the difference between the impact of the ‘eclectic’ strategies offered by the local authority and the ABA based strategies would be to look at an example. Jacob was a very picky eater and would only eat a very small range of foods – noodles, muffins, bread, banana milkshakes, mango and plain rice. We were very concerned about the lack of variety in his diet and asked the Disability Nurse what we could do.
She suggested we try involving Jacob in some of the cooking, perhaps allow him to chop some things or stir some thing while it was cooking. She also suggested we put new foods onto his plate (as repeated exposure to them might make him more willing to try them) and writing a social story which would encourage him to try new foods. We tried the suggestions, but they had absolutely no impact. We then asked Tailor Ed what we could do. They implemented the following plan. At a certain time of day Jacob was shown a symbol which showed a child eating and told ‘It’s tasting time.’ Initially the food that he was required to taste was one which we were fairly certain he would like, based on his texture and taste preferences.
The first occasion on which he was presented with the food he was only asked to touch it, this progressed over a few occasions to touching it to his face, touching it to his lips, licking it, putting an almost invisible amount of it in his mouth and then gradually bigger and bigger pieces until the piece was the size one would normally put in one’s mouth. Each time he did what he was asked he was rewarded with praise and a tickle or a piece of a crisp. The size of the crisp pieces got bigger as the amount that he was willing to put in his mouth and eat increased. We then followed the same procedure for other foods. The strategy was a massive success. Jacob now eats almost anything with rice, many pasta dishes, melon,grapes,apples and fish.
Tailor Ed also helped Jacob to: communicate better with us; enjoy going to the shoe shop and sleep in his bed without anyone else needing to be in the room.
When Jacob was nine we had huge issues with him in terms of his aggressive behaviour. We were at our wits end and once again the only organisation which was able to offer any useful help was Tailor Ed. His key worker suggested a strategy which she had seen used in an ABA school in London which would provide both a distraction and a consequence. Her suggestion resulted in an almost immediate reduction in the frequency and intensity of his aggressive outbursts which were becoming so much of an issue I thought we were not going to be able to keep him at home with us for much longer.
As well as the ABA input we received from Tailor Ed we have also been running a limited home programme for an hour or so after school. We have managed this as best as we can but we do not have the funds to hire an ABA consultant and we have had many changes of staff. Each time a therapist has left we have had to train a new one and to allow time for Jacob and the therapist to get to know each other. However, even with a programme as limited as ours, Jacob has learnt many important skills such as: stopping and holding hands before crossing the road; sitting well in a hairdressers and getting his hair cut; allowing a dentist to look at his teeth and asking for help when he needs it.
These may not be huge achievements for a neurotypical child, but they have been difficult for Jacob to learn and having these skills has made a big difference to his and our quality of life.
Jacob is a loving and affectionate child with a good sense of humour who clearly loves his family very much. He enjoys climbing, being outdoors and going to the coffee shop for his beloved hot chocolate. However, he still has substantial communication and behavioural issues and attends a special needs school which caters for children with severe learning disablities. Without the ABA input he has received his communication would have been minimal and the resultant frustration would have made his behaviour completely unmanageable.
I want Jacob to have the same opportunities as any other child should have, the right to be able to live at home with his family, the ability to do things in his local neighbourhood, the confidence to communicate with others and the skills to have as high a level of independence as possible as he grows up.
I cannot emphasise strongly enough how much of a difference even a small amount of ABA had made to our lives, I strongly believe that an ABA school would be of immeasurable help to Jacob and the many children in Edinburgh with autism who currently have limited or no access to ABA.