Authors: Anna Kennedy
I hopped into the car and drove off. Where shall I go? I wondered. I ended up in the rear car park at Hillingdon Manor School, just yards from our home. I parked up and tried to gather my thoughts – which would have been much easier had I not received a number of telephone calls from Sean asking me where I was and when I’d be back. ‘I’m out – leave me alone!’ I switched off my phone for a while, but when I switched it back on it listed around 30 missed calls from Sean and Patrick!
Other times when I’ve been too stressed to stay home I’ve driven to a nearby park, then telephoned my sister for a chat.
‘You’ll be all right,’ she always tells me. ‘After all, you wouldn’t be able to cope with a normal life!’
I
t wasn’t until 2003 that it was finally confirmed: Sean does have Asperger Syndrome. Although I’d never fancied telling him what I had suspected after talking to Christina Bertolucci, the subject was raised during some banter between Sean and me. I joked that, after one or two things he’d done, I wouldn’t be surprised if he had Asperger Syndrome too. But I was surprised by his reaction, as he agreed it may be the case.
Grabbing the bull by the horns I suggested he meet up with Dr Fiona Scott, a chartered psychologist and honorary research associate at Cambridge University, who had become known to us through her dealings with Patrick and Angelo, and who was a member of the team behind the three-year study linking autistic-spectrum disorders to the MMR jab.
More surprisingly, Sean just said, ‘OK, make an appointment for me.’ Shortly afterwards we made the
two-hour
car journey to Cambridge. Dr Scott interviewed us both, then Sean was given some questionnaires to fill out and asked
to give some information about his background. I suppose it was only around three or four hours later that the diagnosis was confirmed.
On hearing the news Sean went very quiet. Was he upset? Well, that’s always rather hard to tell, since he does tend to bottle up his emotions. If he was, it didn’t last. On the way home we actually had a laugh about it and, at least, a lot of pieces in the jigsaw of our relationship had now fallen into place. The only thing I noticed in particular was Sean’s insistence on driving home – normally when we are together I’m the one who drives. We’ve not really spoken much about the diagnosis since. It doesn’t really matter to me because he’s still the same Sean I met all those years ago and fell in love with.
I like to grab whatever moments I can with Sean. I have to say, since his diagnosis, he seems to be so much more loving towards us. He’s still not a touchy-feely sort of person. He finds that so hard to comprehend, but he’s happy to give me a cuddle, just as long as it doesn’t continue for too long! In spite of all the hurdles we’ve had to face in life, Sean and I are still really, really close. He has recently been diagnosed with an eye condition known as Stargardt’s disease, which means his peripheral vision is good but his central vision is becoming progressively worse. Sadly, this is not a treatable condition and his sight is going downhill quite rapidly, although we’ve been told it will stabilise at some point.
Most things Sean says have to be right – it’s black and white with no grey areas – which often gets people’s backs up, although he doesn’t mean to. He has strong, honestly-held views but sometimes these bring him into conflict with others
who do not fully understand where he’s coming from. He is so knowledgeable that some people see him as a threat. When he worked at Thames Water he was so good at his job in the IT department that he came over as being quite smug about it and this earned him the nickname ‘God’.
Sometimes, I find it really frustrating when he seems to think I, or others, know what he’s thinking. We had a meeting with a group of teachers recently, then we met up with some other teachers at a later meeting and, because Sean had told the first group certain things, he assumed the second group had already heard what he’d said to the first group.
Sean has little time for whingers and little tolerance of people who cannot give straight answers to straight questions, and looks back upon all we have achieved together as nothing particularly special at all.
I could theorise as to why he feels the way he does, how he feels he is treated by others, and what he thinks of society in general, but it would be far more relevant for him to do so himself. For that reason, the remainder of this chapter is in Sean’s own words.
I wasn’t at all bothered when I was first diagnosed with Asperger Syndrome. I didn’t have any difficulties with it at all. I don’t feel any different from the next man. It’s just that, in my experience, some people just don’t understand that I don’t understand certain ways of behaviour. Rules and regulations don’t always suit me, or sometimes I find it difficult to conform to them all the time.
To some people I may come across as a moody person
but I love being miserable. I wear black all the time, I like rain, I hate the summer, and I like Gothic-style material – I’ve even got tombstones on my screen saver! That makes me sound really sick, doesn’t it?
I hate to hear people with Asperger Syndrome whining about their condition. Just get on with it! I just think that whining on about it creates an absolute negativity. For me it’s really simple. People’s difficulties, through careful analysis and willingness to assist, can be addressed. All this ‘how they feel about things’ really winds me up. What’s that all about? In reality, is that really helping a person?
Anna’s already mentioned how I’m not very tactile and how Angelo, particularly when he was younger, did not reciprocate her affection. Parents quite naturally want to be affectionate to their children but it’s a fact that some children with Asperger Syndrome or autism just aren’t that way inclined. They don’t always have the same feelings as people who are not on the autistic spectrum.
People with autism don’t worry about selfishness. They rarely see it as that. But everyone’s selfish – not everyone is as considerate as they could be. The difference with a person with autism is the degree and frequency. If you look at how often it occurs, that’s when you can analyse it.
People often ask me about the difference between Asperger Syndrome and autism. Very early on, in 1944, when it was first discovered, there were generally five differences. First of all, as far as Asperger Syndrome is concerned, there is minimal intellectual impairment, no
language impairment, and sometimes difficulties over posture and gait.
People with autism usually have obsessions. People with Asperger Syndrome may have more intellectual obsessions, maybe with dinosaurs or astronomy, while a person with autism may have an obsession with an object such as a vacuum cleaner or a bus. And, finally, one that’s rarely talked about is that some people with Asperger Syndrome may have slightly sociopathic tendencies. Sometimes things they say may not comply with the norm – they have a tendency to get attracted to some nutty ideals.
I often get shot down in flames when I mention this, but I’ve seen people get involved in right-wing ideals –
neo-Nazism
, for instance. That’s not because they’re neo-Nazis – far from it – it’s just because extremists or those bearing militaristic views have very clear and defined ideals, a rigidity of lifestyle. Formulaic lifestyles often appeal to people with autism or Asperger Syndrome because they are so much easier to comprehend. The problem with this is that some may express racist views, for instance saying something like, ‘I hate black people’ or ‘I hate foreigners’. Then you say to them, well what about Sally or Charles? – who just happens to be black or foreign – and they simply don’t make that connection, they don’t know how to reconcile such extreme views with people they may know and like.
That’s why you shouldn’t be too disturbed if someone with these conditions expresses such radical ideals – they may get really into such thought processes and then drop
them just like that. Often our son Patrick will get a bee in his bonnet about something or other and go on and on about it for ages and then, suddenly one day, he’ll forget all about it completely.
I believe society’s attitude towards some disabilities needs to change. There needs to be more awareness of certain conditions if people with disabilities are to be given the opportunity to show what they can do in the workplace. I know there are plenty of disabilities out there but autism is reasonably well known in terms of numbers affected – supposedly one in a hundred people to some degree – but where would you go to find an employer who has a policy designed to assist somebody with autism?
I just don’t see the infrastructure out there for people to succeed. Our life opportunities are restricted compared with an unimpaired person and people have an awful lot of potential that is either never utilised or underutilised. I think this makes their lives very difficult and frustrating.
I believe there’s prejudice against people with Asperger Syndrome. There seems to be a lot of empathy when people are younger, but when they get older, particularly if they are more able, that’s not the case. One person I once spoke to said he didn’t mind helping people with autism, but it’s just that some people with autism don’t help themselves. I think that’s the attitude of some people. They think there’s nothing wrong with this person, it’s all a pose – how can they be clever in this area and not in that area? Well, they may be very skilled and can manage a project, but their bedroom may be a mess.
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 may 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?