Not Stupid

by Anna Kennedy

  Three months later this was followed up by an appearance on the daytime TV chat show Open House, hosted by Gloria Hunniford. Gloria was very interested in hearing about autism and my boys. Norman Pace from the comedy duo Hale and Pace was on the show as well. He was there supporting the Meningitis Research Foundation. Afterwards, he shook my hand and told me that what we had achieved was marvellous. He was very nice to me.

  I met Gloria again when Esther held a Childline event – a charity helpline which she founded for children with problems. This event was held at the Dorchester Hotel in London and I remember being amazed at being charged £5 for a glass of cola!

  I went on another daytime chat show, this one hosted by Nick Knowles on Five. I’d been sitting in the audience with my friend Anne, with whom I had set up the HACS charity. It had been arranged that Nick would come up to me to say who I was and what I’d been up to, but it didn’t exactly work out that way. When the time came, Nick came over and said, ‘This is a surprise. You thought you were here just to sit in the audience to say blah-de-blah, but we’d like to bring you down to the front to acknowledge what you’ve done.’

  And so it was that I was led down to the studio floor and presented with a huge bouquet of flowers and a foot spa because, they said, they’d heard I never relaxed and was always on the go.

  As time went by, we regularly reviewed the way we taught the pupils. As good as the TEACCH method is – at first we had been convinced it was the only way to go – we realised that what works for one child doesn’t necessarily benefit another. As a result we decided to adopt a more wide-ranging approach to run alongside the TEACCH method, because, obviously, all children are different. TEACCH remains the base on which we build, together with a therapeutic approach. There is a particular emphasis on speech-and-language therapy. The reason for this is twofold. First, autism is a communication disorder and, second, and very importantly, the effective use of communication within the school makes learning more effective.

  The Pictorial Exchange Communication System (PECS) is the development of communication skills using an extensive communication system. You take a child who cannot communicate and, through the use of pictures, they get to understand the importance of other people and of communicating with them.

  They then move on to another stage, where they can differentiate between objects and learn how to recognise them, and then they can make requests for those objects and, maybe, construct sentences.

  The final stage of PECS is when the child can make comments about the outside world. PECS is generally used with autistic children. A child with Asperger Syndrome generally wouldn’t use it. It’s based on Applied Behaviour Analysis (ABA). This technique is proven in enhancing the development of communication skills in autistic children, as it seems to teach the child to ‘learn how to learn’.

  The structured approach incorporated in ABA intervention involves breaking down skills into small discrete tasks, the teaching of which occurs in a highly structured environment.

  There’s also an emphasis on the different types of therapy at Hillingdon Manor – speech-and-language therapy on a regular basis. We have three full-time therapists at the school, which is incredible because normally they are so difficult to get hold of. Often in this borough, when a child needs speech-and-language therapy they get a block of six one-hour sessions and this is supposed to enable the child to deal with their problem. It’s nowhere near enough, though. An autistic child’s biggest hurdle is their communication problem so, at Hillingdon Manor, we’re very well equipped to give them this vital support on a much more regular basis.

  We have drama-and-music therapy, the use of which within the school broadens the range of learning experiences to each student, and there is an emphasis on the importance of exercise and physical activity. We also have psychotherapy for the older children.

  While some people claim that semantic-pragmatic disorder is not an autistic-spectrum disorder, others say it is. We’ve currently got provision for a couple of pupils at Hillingdon Manor with this disorder. For them, it’s almost like having autism but without all the impairments – a communication difficulty where the understanding and use of language is affected. It can be particularly difficult for families to cope with a child with this disorder, as the child can often struggle to understand what is being said to them and they find great difficulty in expressing their needs.

  Basically, a child with this disorder may have poor language-processing skills; they may talk in parrot fashion or copy phrases they have heard. Some chat incessantly or repetitively and have difficulties when responding to questions. They may use wrong or inadequate words or even make up words of their own. Sufferers invariably have difficulty in maintaining a topic of conversation and may display some of the milder behaviours of autism.

  We also utilise what are known as social stories. These were developed by Carol Gray, a senior lecturer in education and modern foreign languages at the University of Birmingham. Basically, social stories are a tool for teaching social skills to children with autism and related disabilities.

  Social stories provide people with accurate information about situations they may find difficult or confusing. The situation is described in detail and focus is given to a few key points; the important social cues; the events and reactions the individual might expect to occur in the situation; the actions and reactions that might be expected of them, and why.

  The goal of the story is to increase the individual’s understanding of, make them more comfortable in, and possibly suggest some appropriate responses for the situation in question.

  This, for instance, is an example of a social story:

  Lining Up

  At school, we sometimes line up.

  We line up to go to the gym, to go to the library, and to go out to recess.

  Sometimes my friends and I get excited when we line up, because we’re going some place fun, like out to recess.

  It is OK to get excited, but it is important to try to walk to the line. Running can cause accidents, and my friends or I could get hurt.

  I will try to walk to the line.

  As may be evident, social stories are relatively short, straightforward descriptions of social situations, specifically detailing what an individual might expect from the situation and what may be expected of them.

  Having determined those areas on which one wishes to focus, the writing of the social story can begin. Again, a social story is usually a first-person, present-tense story used to provide students with as much information about a social situation as possible, so they are better prepared to face it and act appropriately.

  There are four types of sentence used to present this information in a social story:

  descriptive sentences objectively address the ‘wh—’ questions: where the situation takes place, who is involved, what they are doing, and why they may be doing it;

  perspective sentences give a peek into the minds of those involved in the story; they provide details about the emotions and thoughts of others;

  directive sentences suggest desired responses tailored to the individual;

  control sentences are authored by the students themselves as something of a mnemonic device – a sentence to help them remember the story or deal with the situation; these are not used in every story and are typically used only with fairly high-functioning children.

  Below is another sample social story. Each of the sentences in this story has been labelled with terms in brackets to illustrate each of the above types of sentence (except for the control sentence – I’ve not yet had a child who has opted to use them, so I’m not even going to pretend to be able to dream up a good one yet).

  Sitting in the car

  In the summer our family goes to Spain for a holiday [descriptive].

  The journey takes a long time because we drive [descriptive].

  My dad is very quiet because he needs to concentrate on the road when he is driving [perspective].

  It is di
fficult to drive in a noisy car [descriptive].

  I will try to keep quiet and sit still in the car [descriptive].

  We believe the extensive range of approaches adopted at Hillingdon Manor offer our pupils the best possible chance of finding a teaching method that best suits their needs and we remain open to trial other approaches as and when they arise as we strive to ensure the most appropriate individualistic requirements of our pupils, whatever their level of capability.

  Chapter Eight

  Branching Out

  In 2000 Sean, Alex, Dave and I set up a company separate from Moorcroft Manor, which we called Autism Consultants Limited, through which we could offer provision to adults suffering from Asperger Syndrome and high-functioning autism. The aim of Autism Consultants Limited is to create employment opportunities, to organise play schemes and structured-activity groups, to offer informational events, training and conferences, and to raise the awareness of autism through education and community involvement.

  Bearing in mind that the world of business was still relatively new to Sean and me, we decided we would be more secure to split our activities between two companies, just in case one of them went belly-up.

  That’s not to say we lacked confidence in our ability to steer the good ship Hillingdon Manor and its associated businesses on a fair course, particularly after hearing Hillingdon Borough Council’s surveyor Gerry Edwards’ comments. Gerry had been the surveyor responsible for the initial survey of Hillingdon Manor when we first approached the council with our proposal for the site and it was his responsibility to come around after fourteen months to check that the required work had been done satisfactorily. ‘Hats off to everyone,’ he said. ‘You’ve proved all the doubters wrong.’

  Alex was the only member of HACS with nothing to gain personally from the opening of Hillingdon Manor, since his son was an adult in his thirties at the time. Nevertheless, he had gone the extra mile following a number of late-night chats at our home prior to the acquisition of Hillingdon Manor. Now we found ourselves in a position to pay him back for his unstinting support. Sean and I had planned to get Hillingdon Manor up and running within a three-year time frame before, hopefully, being in a position to take things a stage further by creating an autistic centre for adults – and that could benefit Alex’s son Sean, who was living inappropriately in a psychiatric ward at the time.

  Eighteen months ahead of schedule, we found ourselves in a situation to progress with our plans and the search began for suitable premises. Of course, we knew we didn’t have ready money to purchase other premises, so we decided to look for premises that were available on a leasehold basis.

  I’d already read about the St Vincent’s Hospital site in nearby Eastcote in our local newspaper but it was not until I was driving in the vicinity with Alex that I passed the sign for the premises. We decided to turn around and take a look for ourselves. At first glance it looked like the ideal place to form an adult centre. Some of the buildings were on one side of the road, some on the other. The premises included a building known as Fraser House and another known as St Mary’s Centre. There was also a chapel in the grounds and the whole site was located in a lovely country setting.

  After a cursory look, Alex and I decided Fraser House would make an ideal residential home, while St Mary’s Centre could conceivably be transformed into a college for adults. We needed to take a closer look, so we knocked on the door of one of the associated houses, which, at the time, was occupied by a priest. We asked him whom we would need to speak to if we wanted to look around and were pleased when he informed us he had a set of keys and could show us around straightaway. No sooner had we set foot inside than we felt we could really do something there. I remember feeling a sense of excitement and could hardly wait to tell Sean and the others all about it.

  After their approval, we decided to set up a meeting with John Davern and Jacqui Scott, who were associates of the group running the St Mary’s Centre site. At the meeting we told them of our intention to open a centre for high-functioning autistic adults. John and Jacqui had already heard of our work at Hillingdon Manor.

  Although it turned out Fraser House would not be available to us after all, as it was due for demolition, after considerable discussion and negotiation we decided still to go for St Mary’s Centre, even though I couldn’t help wondering how we would ever manage to accommodate a college and a residential home within its limited confines. Alex, however, is very good at visualisation and suggested a dividing wall through the middle of the premises. We measured up and went for it. An annual lease of £40,000 was agreed, which would need to be added to a significant rates bill.

  Once the centre had been secured it was time for the work to begin to adapt it to suit our needs. Once again, there was a lot to organise and, once again, we were very fortunate to have many helping hands at our disposal. Even the Royal Navy became involved this time, sending men along to lend a hand with the mammoth task of painting and helping to put gym equipment together for us, which was installed to help the adults destress and to promote their feelings of wellbeing. A lot of adults with Asperger Syndrome suffer from feelings of anxiety, and this equipment would go a long way to relieving those feelings.

  Volunteers from the Prince’s Trust turned up to chop down all the brambles and clear the grounds, while offenders from the community services also came along to help out with a variety of tasks, and one client’s brother, who had contacts, managed to organise the installation of fencing free of charge.

  As the work progressed we were contacted by social services, who expressed interest in what we were doing. Would we be interested in a project they were developing – an independent house for people suffering from a variety of conditions? This, however, was not something we felt would be of interest to us – our project was solely for people with autism and Asperger Syndrome and we saw no reason to change our aspirations.

  Over the following months we found our work and time split between preparing St Mary’s Centre for opening and the running of Hillingdon Manor. It was an exhausting period but, because we had clear ideas of where we wanted to go and what we wanted to achieve, we knew all our efforts would be worthwhile.

  After an article about Hillingdon Manor was printed in The Times Educational Supplement, we were contacted by Sally and Chris Eaton, who had opened up private mainstream independent schools of their own in Slough, having become disillusioned with the standards of education available locally at the time. They empathised with our struggle and they proved to be an invaluable help to us, particularly with their advice about dealing with the regulator Ofsted. Eventually a circle of friends would be formed between their schools and Hillingdon Manor, which enabled all the pupils to get together – a truly beneficial experience all round. Sally and Chris also helped us out financially, raising £3,000 towards the purchase of sports equipment.

  The original Video Diaries documentary had ended when we collected the keys for Hillingdon Manor. For the follow-up, the producer of the ITV programme That’s Esther, Richard Brock, wanted to show events leading up to the point when children came through the doors for the first time. Richard wanted to record our efforts in obtaining furniture and staff, and how Patrick and Angelo would cope with their new learning environment.

  Material featured from the previous Video Diaries was added to footage taken by Esther’s team. Filming continued even after our first birthday and compared the children’s progress from the day they first joined the school with how they were a year later. The improvements were startling. You could really see significant differences in the children. This high-profile attention prompted a huge amount of support – both financial and otherwise – and we received many requests for information and advice about autism.

  After filming had been completed I’d asked Esther how she would feel about being the patron of Hillingdon Manor, and she readily agreed. We’ve kept in touch ever since and she’s remained a keen supporter of the school and of what we are trying to do. Sh
e is also patron of HACS and she played a large role in helping us to obtain an £18,500 Sunshine minibus, which she and former boxer Henry Cooper presented to us at a posh London hotel. HACS has since gone from strength to strength, and currently supports 275 families under the directorship of our close friend Toni Mullally.

  Further large cash sums followed, not least a donation of £18,000, which had been raised after the Mayor of Hillingdon’s decision to choose us as his charity of the year. A big party, attended by the mayor, was held to celebrate the first birthday of the school. We received a lot of congratulations cards and, up on the stage, I was presented with a beautiful gold watch. Yet again, Esther returned to help us celebrate and to offer kind words of support.

  ‘I’m thrilled with the miracle that has been performed here,’ she said, adding, ‘I remember when all this was just a twinkle in Anna’s eye. What Anna and the team are doing is a battle cry for parents all over the country. Parents of autistic children find it difficult to find the right education for their children. Integrated education, which means including children with different needs in the same classes, works for some, but can be an excuse for neglect.’

  The fifth annual golfing event held by the Rotary Club of Elthorne, Hillingdon, raised a further much-needed donation of £10,600, which was set aside to help pay for improving the internet facilities and bringing in more computers. Our refurbishment project was still ongoing and we were still keen to get more children into the school to ensure its financial viability. I was still doing newspaper and magazine articles and countless TV and radio interviews to promote the school, but this had developed to such a stage that it was dominating my life and, to be honest, I was getting a bit exhausted by it.