Authors: Anna Kennedy
M
y personal ambition in life is to remain fit and healthy so I can carry on with this work and to look after my family. I worry about what will happen to Patrick and Angelo, come the time Sean and I are no longer able to cater for their needs, but we hope to be able to cover every aspect of their future support care before we end our days.
Hopefully, we can also offer the benefit of our experiences and offer advice to others. If someone in your family has been diagnosed with autism, please remember there is help out there. It’s so important to talk to someone – don’t try to carry the burden on your own. Talk to other parents with autistic children. It’s important not to feel alone. The National Autistic Society has come on in leaps and bounds since we first tried to contact it and is a very good source of useful information. Alternatively, you could, of course, contact us at Hillingdon Autistic Care Society or at Hillingdon Manor.
Try to remember, however dire the circumstances may appear
when you’re faced with this situation, that you are not alone! In the London Borough of Hillingdon alone, it was estimated there were 2,129 people with autism in late 2007. I’ve found it helps to have an interest that allows me to have some time just for myself. Dancing is my way of coping with the stresses of day-to-day life. I can appreciate how some marriages can be put under immense pressure when trying to cope with an autistic child – whether it be the ending of the relationship or taking to alcohol, cigarettes or Prozac. Dancing gives me something to look forward to – something that’s just for me.
I can also use dance to help the pupils. I teach dance at Hillingdon Manor School several times a week. The children love the mixture of dance and exercise. This is undoubtedly my favourite part of the week because I can enjoy watching the improvements they are making each week. Dance stretches the imagination and bodies of autistic children and there are other benefits such as stronger muscles and bones, better coordination, agility and flexibility. Dance also improves their spatial awareness and balance, which many autistic children often find difficult. I’ve found that dance increases their physical confidence and their mental functioning, which is particularly apparent after they have performed in front of their parents.
It’s very rewarding but, on one occasion, while teaching dance at West Middlesex College, I stepped onto my left foot and went over on my ankle. I was in agony, having ripped my Achilles’ tendon. I didn’t want to shout out in pain in case I alarmed the students, so I asked them to sit on the mats to perform floor exercises.
After they had completed their exercises and relaxation session, the lesson ended and they left the room. I was crying in pain and hopped into the staffroom before being sent to hospital for treatment. My leg was set in a plaster cast for three months. I was still able to go to work at the school each day, though I had to hire an automatic car to do so. The injury took five months to heal and, although I was still exercising at home, I desperately missed the opportunity to dance.
The diagnosis of symptoms on the autistic spectrum still needs to be improved, but it is getting better, resulting in more adults now being identified with the condition. Unfortunately, some of them have already been misdiagnosed as having schizophrenia when, in fact, they’ve had autism all the time. As a result, many individuals have been given inappropriate medication, which may have damaged them, and now, instead of having autism as their primary disorder, mental-health issues are more dominant because of what the drugs they have been prescribed have done to them. If only the correct diagnosis had been given at the outset, earlier intervention for autism could have been made and it wouldn’t have cost the boroughs so much when these people reach adulthood because some progress, however limited, could have been made.
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.