Not Stupid

by Anna Kennedy

  Sometimes when you hear of someone with a high profile being reported in the media as having Asperger Syndrome tendencies, it’s almost as if it’s a criticism. We’ve seen it regarding a top, top politician in recent times, but it doesn’t diminish his ability to do his job, so why point it out in the first place? Sometimes I’ve even seen it as a term of abuse.

  That’s the problem, though. I’ve seen people with Asperger Syndrome who are very eloquent and organised, discussing the issue at hand in an able and articulate way, but they could be picking their nose at the same time, not realising how socially unacceptable they appear.

  When you get older, particularly if you want a conventional life, it doesn’t take much to kick you out of the mainstream. That’s why it’s important for people with Asperger Syndrome to choose their careers very carefully. They’re best placed in positions where they have a lot of autonomy and without so many pressures on them.

  Some careers are much more suitable than others. Touchy-feely personal skills are not much good. If you need to work in a very tight-knit team for an organisation – and, personally, I can’t think of anything worse – well, that would be dreadful. Careers with autonomy where you’re reliant on your own skills are far better, the obvious being law, or teaching at the higher end of the scale (not necessarily in a school but in a college or university), computer programming, system engineers – jobs that may be intellectually demanding but have a certain predictability.

  Even in law, you get yourself to a stage where the ideas are very complex but you can understand them because you are working in a framework that’s very predictable. Strict rules. If you’re taking a case to court, this has to be done by a certain day, and so on. It’s almost modular.

  If you look at the way the Disability Discrimination Act 1995 deals with autism and Asperger Syndrome, first of all there was a discussion as to whether the conditions were covered by the Act, but case law has settled that argument. That’s fine, but the onus is on educational establishments and employers to make reasonable adjustments for a person’s autism/Asperger Syndrome, but there just isn’t the understanding. So many people, unable to discern a visible handicap, cannot comprehend why people with these conditions need to have any adjustments made.

  So what sort of adjustments are necessary? A person with Asperger Syndrome in higher education may need a lot of clarity of expectations, of what’s needed and when. They may, possibly, need help with organising their time so they can meet their deadlines. One of the big pitfalls for people with Asperger Syndrome is they can do only a certain number of things at a certain time, so they have to be very clear as to where their social life has to end so they have the time to do the work they need to do. The problem is that this doesn’t happen, and that’s why one-to-one support is very important.

  I get annoyed when I hear that people with autistic disabilities are included in the workplace – that’s just a load of nonsense. There’s a whole range of attitudes ranging from ‘this person hasn’t got a problem’ to ‘we’ve all got problems, what makes you any different?’ and even ‘if you haven’t got a physical disability, what’s your problem?’

  Some employers may say they’re 100 per cent behind the Disability Act but then argue that it doesn’t necessarily apply to them because of their ‘special’ circumstances. You still get that an awful lot – it’s almost as if they’re saying, ‘Our job is so important we can’t spend time faffing around on your behalf!’ I recall an example of this attitude when I spoke to someone from the department that specialises in autism at the University of Birmingham. ‘Why should you get any special treatment?’ she asked. I was amazed this comment came from a woman who worked for an organisation that specialises in the subject.

  The ideals behind the Disability Discrimination Acts of 1995 and 2005 are very good. I think inclusion means that the environment in which a person with a disability operates, for instance the workplace or a place of education, is modified such to take account of the effects of their disability. In a mainstream school the environment should be adapted to help that person.

  What isn’t inclusion is when that child goes to a specialist unit attached to that school. That’s not inclusion, that’s integration. Within schools, what the Disability Discrimination Act is designed to do is to extend that idea into higher education and then into the workplace. The burden is on the employer to make the necessary adjustments.

  The emphasis is on ‘reasonable’ adjustment – an employer simply can’t make adjustments that would undermine the practicalities of their business. So, for instance, a person with a physical disability – say they can’t walk – couldn’t be expected to find employment in a warehouse where they may be expected to move around a lot and carry boxes. However, the idea is to get people with disabilities included in society. The problem with autism and Asperger Syndrome is the lack of understanding of the conditions and knowing what adjustments might be necessary. There also seems to be a lack of willingness by some employers. In my opinion, however worthy the Act is, it has failed people with autism and particularly Asperger Syndrome and, if anyone can provide evidence to the contrary, I’d be more than willing to see it.

  People need to recognise that employers have to comply with the Act. The benefit to society of doing so, having people with disabilities who are included, has to be a good thing. I think natural prejudices need to be addressed. Of course you could penalise employers – and the damages at employment tribunals are potentially unlimited. That’s fine, but it doesn’t always have the desired effect. More likely it encourages some employers to find a way around the situation. Ideally, employers would say we have to comply, we want to comply and it’s good to comply.

  The All-Party Parliamentary Group meetings on autism may have their weaknesses and failings, but nevertheless they’re good for networking. In all honesty, our politicians are committed to addressing the difficulties people with disabilities have because, in this country, they’ve passed the Disability Discrimination Act 1995 and the Disability Discrimination Act 2005, and that’s excellent.

  But society in general is not prepared to take everything on board – so what can politicians really do about that? If the Prime Minister was to stand up and say we all have to be nice to people with disabilities, it wouldn’t matter a hill of beans, would it? It’s people’s perceptions that matter. At least politicians of all persuasions have tried to do something about it and we should acknowledge that.

  Money, of course, is a big factor and always will be. Some people argue that labelling someone with autism doesn’t help their cause but, without the label, you don’t get the funding – and sometimes a label is a passport to get things done. You’re not labelling a person, you’re labelling a disability, and that’s not a negative approach.

  Another thing that concerns me was a claim made many years ago that there’s no such thing as autism – it’s a social construct, it’s all in people’s minds. Then again, you still hear people say there’s no such thing as dyslexia or ADHD – kids just need a good beating – and some so-called expert in America has claimed on the internet that it’s the mother’s fault if a child has autism because they’re ‘refrigerator mothers’ – in other words children are not reciprocating affection or tactile responses because they haven’t learned it from their mother. Does anyone really take such ludicrous claims even remotely seriously?

  I personally think Asperger Syndrome is far too heavily diagnosed. I’ve heard of people being diagnosed after a ten-minute examination. That’s potentially disastrous. Someone may display certain traits, but it doesn’t necessarily mean they have the condition. One so-called expert, a clinical psychologist, made a diagnosis at one of his seminars. The parents of a child came up to him for his opinion.

  The child’s father appeared very rigid and stiff. When the psychologist said, ‘I think your child has Asperger Syndrome,’ the mother asked, ‘Do you think one of us has Asperger Syndrome?’ He told her, ‘I think your husband ma
y have’ – simply because of the way he appeared. The whole thing was ‘diagnosed’ in the space of five or ten minutes. OK, the psychologist may well have been right, but he could have been wrong, and the point I’m making is, you shouldn’t tell someone like that – far more care needs to be taken.

  Normally, a diagnosis is likely to be fine, just as long as it’s done properly. As long as good practice is applied, it shouldn’t really be necessary to seek a second opinion. I wouldn’t accept an informal diagnosis from anyone. How can they diagnose without a formal assessment? A good detailed background history is always vital.

  There are a lot of people with high-functioning autism and Asperger Syndrome who could make a significant working contribution to society. I think that only around 16 per cent of people with Asperger Syndrome are in work. They have no learning disability or verbal impairment, so that should stand them in good stead – so why is it the other 84 per cent cannot get a job particularly when, in this country, unemployment stands at around six per cent?

  The ‘system’ in Britain is designed to support people up to the age of 19. Maybe they’ll go on for another three years but, after that, it’s time to make their own way in life – but many need far more time and support. The trouble is, the system won’t fund it.

  Speaking personally, I never had any difficulties in my IT career, which benefited me considerably when Anna and I took on the Hillingdon Manor project. Never at any time did I feel we were taking on too much, because I was used to managing big projects through my work with Thames Water.

  I still can’t fathom why some people thought it was such a big deal, because the amount of money we needed to raise, £627,000, may sound a lot, but the amount I was dealing with at Thames Water was significantly more. When we took on the school project we had the right people in place, all of whom were committed to the cause. I didn’t have a single sleepless night over it at all.

  I just didn’t see what the difficulty was.

  And Finally…

  After all the recent upheaval, life goes on at Hillingdon Manor and its associated facilities. Sadly, in July 2006, Angela Austin said goodbye and strolled off into the sunset to enjoy her well-earned retirement, while Sean Pavitt swapped his role as head teacher at the Upper School to replace her.

  A year later, though, it was Sean’s time to say farewell after he accepted a position as head teacher at an emotional behavioural disorder school in Dorset, not far from his parents’ home. We were sad to say goodbye to Sean – and his wife Cheryl – after all his hard work at Hillingdon Manor and the Upper School, and knew we would find it tough to replace him, but we were very fortunate to find someone we considered to be the ideal person to take over the reins following an extensive internet search.

  The staff and I were delighted, and not just a little relieved, to welcome Gail Pilling as the new principal at Hillingdon Manor in time for the following academic year, and we are confident that, under her stewardship, the work at the school can only continue to develop in a positive manner. Gail began her career at Hillingdon Manor initially working alongside Sean Pavitt for a short while prior to his departure. She is an educational psychologist, a speech-and-language therapist and an HMI (Her Majesty’s Inspector) – all three roles being of great relevance and benefit to her new post. Gail was also able to back up her impressive qualifications with some considerable experience in supporting children with autism and Asperger Syndrome.

  Also, I am so pleased and excited to report that all the uncertainty and distress leading to the take-over of Hillingdon Manor have finally been put to rest. After a really stressful year which had seen tensions between myself and some of the directors almost reaching breaking point – not to mention all the problems associated with the much publicised ‘credit crunch’ which made our ability to obtain loan finance much harder – we nevertheless strove to ensure that the developments needed to ensure the school could function appropriately were put in place.

  Then, in the middle of 2008, we received an unsolicited approach from a company called Hillcrest Care Limited, one of the UK’s leading independent providers of children’s homes, foster care and learning disability services, who expressed an interest in teaming up with us. We already knew a certain amount about Hillcrest having been invited to one of their sites at Chipping Norton the previous summer. Without exception, we had all been very impressed by them. Coming through loud and clear during our visit was the fact that, although they were a successful private company, they were very client focused and had a proven track record. This was something we could all relate to.

  After their approach I decided to try to find out more about them. My thorough investigations revealed that they were a large company with many interests, which I felt were complementary to our own. Without question they are a professional company run by very competent staff. Conversations with Roger Colvin, their chief executive, and managing director Richard Greenwell, made it clear to Sean and I that they shared the same vision with regards to the future as we did. Sean and I were not supportive of the idea of using venture capital to take the services forward and, for us, the fact that Hillcrest is a private company made them particularly well suited. Because of all these facts, we gave the Hillcrest partnership our full support and, eventually, after obtaining the support of the other parties involved, the merger was approved. The process of selling the company was obviously going to be long and expensive and proved to be very frustrating for Sean and me. Nevertheless in November 2008 the process was, at last, completed.

  I shall be remaining in my role as a director of Hillingdon Manor School and the other adult provision which we provide at The Old Vicarage, Summercare and at West London Community College – the new name that has since been given to West Middlesex College. I am a significant shareholder of the new holding company, Hillcrest Autism Care Limited, and I will work closely with the Hillcrest management team as we build on top of the excellent achievements we have made to date.

  Hillcrest’s acquisition of Hillingdon Manor and its associated facilities added to the 500 staff and 6 schools that are part of the Hillcrest family. This was a huge burden lifted from my shoulders. At last, we could look positively towards the future by expanding and enhancing the services we already had to offer. In his press release after the partnership came to fruition, Hillcrest’s Chairman and founder Barry Sampson said: ‘We are delighted to be adding Hillingdon Manor School to the Hillcrest family. After our acquisition of Orange Grove foster care last year, which is going from strength to strength, we were keen to continue the strategic growth of Hillcrest into associated areas’.

  Hillcrest is a well-established business. Founded in 1994, it currently has 10 specialist children’s homes in England and Wales that cater for children with, amongst other things, emotional and behavioural difficulties. It is one of the largest childcare groups remaining in private hands. Hillcrests six fully registered DfES (the old name!) schools provide a full, rich and varied curriculum, which is delivered by qualified teachers and support staff.

  The Learning and Disability Services wing of Hillcrest has created a number of exciting, pioneering and innovative projects which include residential homes for adults, and supported living with domiciliary care and residential children’s homes that support children up to and during their transition to adult services. Barry Sampson, is also the chairman of Seaward Properties, which has been awarded one of the UK’s top property awards, is the majority shareholder of Hillcrest Care, so we are more than satisfied with the high calibre of people we will now be working alongside.

  Being part of the Hillcrest group will provide us with greater support and access to funds for expansion and development of the services we can offer. Hillcrest set to work immediately, adding an extra classroom block at the school to help accommodate the excess demand for places.

  We have an exciting three-year development plan for Hillingdon Manor through which we will, hopefully, establish separate extended primary, secondary and Inten
sive Communication and Life Skills Department provision which is desperately needed due to the excess demand we have been facing. We also have plans to extend our admission criteria for our adult provision to include adults on the autistic continuum with more complex needs, and this will create a facility that will also benefit Angelo when he reaches 19 years of age.

  Things have just been getting better and better, particularly at West London Community College, where work is still ongoing to meet the complex and specific needs of the students by way of a person centred approach. Each individual’s programme is currently designed to promote the students’ intellectual, psychological, cultural, physical and creative competencies. We offer courses in ICT, life skills, vocational training skills, stress management, assertiveness, and relationships with sex education. Among the more practical groups are a lunch enterprise scheme and a tuck shop. We offer choices of community-based physical activities such as swimming, football or working out in a gym.

  The college was successful in securing a grant from the Football Association, which will run for the next three years. This has enabled us to form a seven-a-side football team in the West London Disabled Football League. As I write, the team are preparing for their second match, having won their first game quite magnificently!

  Academic study at the college is available through a variety of routes. It is essential to plan, with the student, which option best meets their needs. This could be anything from attending university to a correspondence and distance-learning programme. Our staff work closely with colleagues from other services to form a multi-disciplinary team, providing a holistic approach to students’ welfare and well being.