I have a son, Alex, aged 19 years who followed an ABA programme which started just before he was 3 years old, and ran for 16 years.
Alex has autism and severe learning disability, and whilst this diagnosis has not changed, ABA has been a life-saver for him and our family. As an infant, he was regressing rapidly, rather than making progress , and he had very severe behaviour problems, no language or language comprehension at all, and no other means of communication. It seemed that all the professionals we came across in our efforts to help him, however experienced and well-meaning, simply had no idea where to start. People assumed that Alex had knowledge or understanding which he just didn’t – and then were at a loss when he failed to respond to their approaches, and regressed further.
So we started one of the first home ABA programmes to set up in Scotland. I joined Peach (now Child Autism UK), got in touch with other families, and found an American ABA consultant who was visiting other families in Scotland at that time; she was really excellent. Even on the first day the feelings of relief were huge – here was an approach that assumed nothing and was tailored in minute detail to the individual and how he was responding to reinforcement at that moment.
Little by little, with small steps forward, then large steps backward, then small steps forward again, we have slowly built up Alex’s communication and functional skills. We have been able to live together as a family (if a rather unusual one) which we feel would otherwise have been impossible.
He has been able to enjoy outdoor activities and holidays with us and is a keen walker. This is the boy, who, on the ¼ of a mile walk to nursery, used to throw himself screaming to the ground 25 times or more. He has learned to swim, ride a bike, orienteer with a shadow; he is toilet trained and has basic self-help skills like washing and dressing, with some supervision; he has learned reading and writing and simple arithmetic including the use of money. He communicates with voice but his speech is often poor and disordered. Originally we used Picture Exchange Communication System (PECS) to supplement speech, but now Alex uses an iPod with application Voice4u.
He has developed enough skills to understand and benefit from visual schedules, video modelling and very simple picture stories written specifically for him. Visits to the doctor, dentist and hospital are no longer a nightmare, and he has been able to travel on public transport and even plane flights with a lot of support. Interaction with other people remains a challenge, but he can engage in co-operative tasks with them and take turns.
Alex was able to attend local mainstream nursery and primary schools part time, and then special secondary school, accompanied by an ABA shadow from the home programme at all times. He received education and tutoring for about 35 hours a week all told. We ran the programme year round, through the school holidays, but as time went on, increasingly went away for holidays as a family together.
Despite a tremendous amount of effort by him and dedicated teams over the years, Alex’s language comprehension and understanding of the world about him are still greatly impaired, and he still has significant behavioural problems from time to time – but now we do have the means to manage them effectively.
As time has passed, I and the team took on more and more responsibility for running the programme ourselves, but we still had professional input from ABA consultants 4 times a year, I have had several consultants, each with different ideas to offer. The emphasis in the later years was very much on communication and functional life skills for adulthood – cooking, shopping, washing up, growing vegetables etc, in addition to developing the outdoor activities which he really enjoys.
My local authority fully funded the programme year round, but this was not easy to achieve.
Initially we persuaded local councillors to fund the programme as a pilot project, which ran very successfully. But after a couple of years a decision was made to close the pilot. We then took the council to court and won an action to quash that decision. There were then many other attempts to stop funding, but we managed to dodge these one after the other, often at the 11th hour, until finally Alex’s (very decent) headmaster intervened and brokered an agreement with the local authority.
Relations then improved with the local authority out of all recognition and a similar package for secondary education at special school was agreed by mutual consent. Given the severity of our child’s needs this was also a very much cheaper option for the local authority than sending him to a residential school. Relations with the local authority and the schools became excellent.
Alex has an older brother, Phil , who has none of these difficulties. When he was young, I felt that it was a real juggling act to try to spend enough time with Phil. However, he seemed to enjoy and benefit from the company of bright young tutors who came in to teach his younger brother, and we tried to involve him in parts of the programme. Phil is now at University studying medicine, and is perhaps a more mature young man for his age, with a better understanding of the needs of others, as a result of his unusual childhood.
I hope that in the future this type of specialised ABA-based education will be widely available, especially for children like Alex, who was completely unable to learn any other way. I feel that he has made the best progress he possibly could, and will be as independent as he possibly can be in adulthood, although I accept that he will need specialised help for the rest of his life.