by Anna Kennedy
When people ask me what I hope for in the future, one of my main desires would be to see the process offered to families after a diagnosis of autism improved to such a degree that it is easier for them to understand what it is and how they can cope. Parents need far more support to show them the direction they should go. Here, in Hillingdon, we have at least got HACS, which was set up with parents and families in mind, and Hillingdon Manor as a place of learning for children with autistic tendencies. That’s a lot more than in most areas, so there’s a lot more that should be done nationwide in that respect. People should not be just left alone to deal with it.
As Sean and I discovered, it’s a real minefield, particularly when it comes to getting the right sort of education and statementing for an autistic child. I know things have moved on in a slightly more positive way since Patrick and Angelo were diagnosed, but there are still problems.
Speaking to various parents, I’ve learned that getting a statement of special educational needs for preschool parents is still difficult, even ten years on. Boroughs are saying let’s wait! But wait for what? Getting a statement is the beginning of the journey for parents. They need resources allocated for their child. Lots of local authorities have been moving away from the statementing process. Sometimes the people who are making the decision whether the child needs a statement, or what support is in the statement, are people who have never met the child and know nothing about autism!
It would be great if there could be more specialist schools because not all kids can cope when sent to mainstream schools. There’s a good argument for both specialist and mainstream schools. Put simply, every child deserves a decent and appropriate education to help them cope with life in their early years and to guide them on their way to adulthood.
Also, it’s important that professionals such as doctors, teachers, social workers and others get the proper training to know what is best when dealing with autistic children. For God’s sake, what is the point in giving teachers a half-day’s training session on how to teach autistic kids? I’ll tell you now: there’s no point at all. I should know – I’ve been living with it for years and I’m still learning!
I’ve met so many GPs who have very little idea about autism. I know there are many disabilities out there but autism affects at least one out of every hundred children! Well, that’s a significant ratio, so surely our GPs should receive adequate training so they know how to recognise and deal with the symptoms.
I get frustrated at what I see as the disjointed networking between organisations that deal with autistic children. Some like to keep their information close to their chests, but why? We should all share in order to increase the awareness of all aspects of the autistic spectrum and then we can all fight the same battle together. Are we not all trying to get the best we can for people with autism? After all, it’s not a competition!
Following the countless battles Sean and I had with Hillingdon Borough Council, it seems things have turned full circle and there is now a working relationship between us and council officers. The council has, in the past, helped with the funding for autistic children to attend the Higashi School in Boston. Some time ago, when we enquired about the possibility of sending Patrick and Angelo there, it would have cost £54,000, which we were expected to fund ourselves.
It’s ironic how things can change. Once we were locking horns with the council as we struggled to obtain educational provision for our boys, yet nowadays we find ourselves cooperating with them as they refer children to us and, to be honest, I just feel glad we can help. We’re here. Use us, because we’re a vital resource for the borough, even though we’re still considered to be an out-of-borough resource because we’re an independent school.
A while back we received a visit from the director of education from Hillingdon Borough Council. To be honest, we got the impression he wasn’t too keen to come at first, particularly when he told us he could spare only about twenty minutes of his time. It was pleasing, therefore, when he stayed with us for nearly three hours. I like to think that means he liked what he saw. We often get requests from people in the teaching profession who wish to visit Hillingdon Manor and sometimes we receive enquiries from other boroughs wanting advice.
The school continues to receive recognition, one of the most recent being the Business Achievement Award for Excellence in Education, an independent award programme that acknowledges business excellence across a wide range of disciplines and is recognised both locally and nationally. This award was a very welcome seal of approval and, although Sean and I are often recognised for our roles in founding the school, this award deservedly reflects the fantastic efforts of everyone else involved in the project, and our last Ofsted inspection went very well indeed, which ensured we crossed the final hurdle on the way to obtaining full Department of Education approval. The school is now widely recognised as a centre of excellence for the care and support of those with autism – our original aims have been fulfilled.
Since Hillingdon Manor opened, we have modified our procedure for admission by including assessments, which now means that potential pupils spend up to half a day on the premises. After this assessment, if it is felt we can meet the child’s needs, a home visit is made by a member of the home–school team. When a pupil is accepted, the parents and local education authority will be informed of the placement. Once the LEA agrees to fund the placement, a starting date is given, subject to availability.
Sometimes it is deemed appropriate for a pupil to be given an assessment placement for a specific period to determine the effectiveness of the placement for that particular pupil. New pupils have a three-month observation period, during which time they are assessed to provide a baseline from which individual educational plans are constructed. However, pupils are not admitted on a first-come-first-served basis. They are admitted when a suitable vacancy occurs within a compatible group. This also applies to children whose referral is subject to Special Educational Needs Tribunal procedures and decision.
A baseline assessment is carried out in the initial six weeks. During this period, staff will observe all aspects of the child’s level of functioning. Baseline assessments include the setting of targets for individual educational plans and the setting up of pastoral support plans.
All placements are subject to a probationary period of up to six months. During this time, a review is held to consider the needs of the child and the ability of the school to meet those needs and the level of resources necessary.
Our curriculum, which is tailored to suit individual needs, is designed to assist pupils to integrate as well as possible into society and offers a truly eclectic approach, which includes the use of physical education; connective education, which features connections for generalising learning; TEACCH; speech-and-language therapy; a social-skills and communication group; Makaton signs and symbols; transactional-analysis therapeutic structures; relaxation, massage and yoga; music therapy; drama therapy; behaviour management; a circle of friends and buddy system; the Duke of Edinburgh Award; daily-living skills; Picture Exchange Communication System; counselling and healthy eating. When teaching children with Asperger’s Syndrome and autism we try to adhere to the following guidelines. As far as possible, we try to ensure that we provide an area in the classroom where they can have their own personal space and avoid distractions; we aim to ensure that the classroom has an element of continuity – not too many changes at one time; we prepare the children well in advance for any changes in school routine, if possible, as this can be very distressing for them; we use a daily visual timetable for younger children and keep instructions clear and simple, checking that they understand by repeating the instructions to them individually as they may not understand that general instructions are for them unless their name is used; we use ICT to support their learning in a variety of ways and use visual and concrete materials to support understanding of conceptual vocabulary.
Great efforts are made to teach the pupil how to interpret social signals
and we use social stories to support a learner in specific social situations (e.g. turn-taking) and we give them the opportunity to explain their anxieties. We give logical explanations when asking them to do something new and ensure that they understand that school and classroom rules apply to them. We always speak to them in a calm and emotionless manner, with little variation in tone/modulation of voice and we explain jokes, idioms and figures of speech – what they are, what they mean and how they work, as far as can be understood, and that people often say things that may not seem logical or literal.
Sometimes I feel as if I have an invisible radar on the top of my head because I always seem to be bumping into people who have a connection with autism. A couple of ladies who work in the new Moorcroft School, which was relocated from the site now occupied by Hillingdon Manor, recognised me and asked if I had any advice or information that would assist them in teaching two children with autism in their classes. They had obviously had great difficulties in coping with their condition and were particularly interested in any information I could give them that referred to anger-management issues.
I agreed that I would speak to our speech-and-language therapist on my return to school and I would ask her to provide the ladies with a social story that could be used to help an autistic child relate to and understand what’s happening to them. This small link between our two schools has since blossomed and, today, a circle of friends exists that helps our children with more complex needs to integrate with children from other schools.
The bestselling novelist Nick Hornby and his now ex-wife Virginia Bovell’s son Danny was born in 1993. Danny is autistic. Nick and Virginia found themselves faced with a similar dilemma to ourselves and eventually joined a group of other parents of autistic children in north London because they felt their children deserved better educational provision than was being offered to them at the time. As a result they founded a nationwide charity of their own – the TreeHouse Trust – and opened a school in London, which specialises in autism education.
I was invited to attend the opening when Virginia paid a visit to Hillingdon Manor after watching a documentary about us on television. She generously donated some money to the school and has since kept in contact with us. At the opening of the TreeHouse Trust School I once again met Cherie Blair. I was surprised she remembered me from the awards ceremony in Kent but she was interested to hear how things had been going for us.
The TreeHouse Trust School had been set up on a temporary site, and, at the time of going to print, a replacement school is being built at a cost, I believe, of around £10,000,000, which will be partly funded by the government and the rest by the TreeHouse Trust. I can’t help thinking we could have opened five or six more schools like Hillingdon Manor for that sort of money.
We often see headlines in newspapers saying things like ‘This is the cure for autism!’ or ‘This is the best thing for autism’. If only it were that easy! I have to say, I feel many of the stories offered to newspapers are from people whose real intention is to make as much money as possible from parents who are at the end of their tether as they struggle to cope with their autistic children. Let’s face it, there’s no magic wand. The most appropriate and effective approach is for parents and teachers to work together in a consistent manner. We’ve seen at firsthand how effective this approach can be.
I’m happy to say our Upper School has gone from strength to strength. One thing we’ve noticed is that, when all the students get together, it’s clear how well they have matured into young men or young ladies. It now has 28 students, the majority of whom have graduated from Hillingdon Manor. The students study at the Upper School until they reach the age of 19, and then, if they are capable, they can graduate to West Middlesex College or a mainstream college. Although it’s still early days, to date three students have already done so, while others have moved on to mainstream colleges. It’s so rewarding to observe their progress and it really thrills me and fills me with pride as much as anything else – if not more so.
At present we have students from 15 different local education authorities, including Hertfordshire, Buckinghamshire and Berkshire, attending our centres. Taking care of their needs, we now have a hundred staff working at the residential home, the college and the schools.
Chapter Eleven
Trouble and Strife
After identifying the need for students who require more intensive support in communication skills, we established an intensive-communication life-skills residence – a converted Portakabin – in the grounds of Hillingdon Manor. This facility has a bathroom, a bedroom, a kitchen and a lounge, where the students can live semi-independently – which fits into my plan of plugging the holes many sufferers of autism face as they go through life.
The classes here have a high adult-to-pupil ratio, providing both one-to-one and group teaching that promotes individualised teaching and learning styles to meet the specific special educational needs of every student. All teaching and learning practices optimise the student’s ability to increase their knowledge and skills. In addition, opportunities are given to practise and generalise these skills in a variety of meaningful contexts and environments within and outside the school.
Teaching is multisensory and communication-centred, which creates opportunities to ensure learning, progress and independence in settings meaningful to the students, who also have the opportunity to gain ASDAN (Award Scheme Development and Accreditation Network)-accredited qualifications.
In October 2006, as our reputation for excellence spread, we felt the need to expand the Upper School, as it was already approaching full capacity. For that reason it was decided to purchase another property known as The Lawns, which is set in the grounds of Hillingdon Manor. The plan was to use The Lawns as a facility for students aged between 16 and 19, and the intention had been to convert the building to cater for 28 students.
You could be forgiven for thinking that, after we’d got Hillingdon Manor up and running, everything that has been achieved since then has been plain sailing and that our businesses have blossomed and almost run themselves. But, unfortunately, trouble was on the horizon as we began to look into ways of financing The Lawns and the following months were as stressful for Sean and me as any we had experienced before.
The problems began when we realised we couldn’t afford to buy The Lawns without outside financial backing. Originally the property had been on offer for £920,000. We could have just about scraped the money together but it would have left us short the following January with reference to VAT and corporation tax. For this reason the directors and shareholders agreed we couldn’t do it on our own and decided we should contact other service providers to assist us.
After initial investigations, we were contacted by two other specialist providers who expressed an interest in buying Hillingdon Manor. This led to a prolonged period during which the directors were trying to decide which would be the best group to align with. If we were to go with the first group, they would have wanted to buy us out. That would have meant I would no longer be a director or a shareholder, I’d just be working for them – but I didn’t want to give away all we’d worked so hard for.
My preference was to go with the second group, who said we could buy up to 20 per cent of the shares and I would remain a director of the company. That, sadly, is where the conflict between Sean and I and the board of directors began. Three of the directors/shareholders, who wanted to retire, were keen to go with the first group but I had no intention of going down that route at all. They could have offered me a job worth £2 million and I still wouldn’t have been interested! I felt we had an awful lot going for us at Hillingdon Manor and that we were something really special – I didn’t want to see us becoming part of a huge anonymous group. We’re a specialist provision, and that’s how we should stay.
Nevertheless, I found myself being strongly urged to go with this group and to take the job offered to me and to work my way up in the new company. Maybe I could even wor
k my way up to a directorship in the future, they suggested. The directors were telling me they wanted to do what’s best for the children – and that of course would be paramount – but did they really think I didn’t want the same thing?
Of course, whichever choice would eventually be made, I knew I would still want to be involved, but, then again, I knew it just wouldn’t be the same. I wanted to remain a director, and to extend the board of directors. Sean, on the other hand, didn’t want to be a director but preferred to help out in the areas of education law and legislation.
I felt that by going with the second group we would have more chance of staying special because this particular group didn’t have any schools at all for children with autism, although they have expertise with children with emotional behavioural disorders. This group wanted to set up a separate company and to use our school as a template, and that appealed to me far more because what we are doing at Hillingdon Manor could then be replicated up and down the country.
The two choices caused considerable conflict between the directors, with me out on a limb battling against the first offer. This resulted in some directors accusing me of being selfish, which, naturally, caused me a lot of hurt, upset and extra stress. I was at an incredibly low ebb and my spirits were hardly lifted when we received some anonymous letters – some of which contained some very unpleasant comments about Sean.