by Anna Kennedy
On top of all these meetings there are conferences and courses I need to attend to keep up to date with current issues, the following being just some attended within a 12-month period: Sensory Perceptual Issues in Autism; Living with Autism; Sexuality in Adults with Autism; Speech and Language in Autism; How to Write a Social Story; Dealing with Unacceptable Employee Behaviour; An Introduction to Autism; Disability Discrimination Act for Managers; Assertiveness in Management; Conflict Management Skills for Women; How to Do Effective Counselling; Diabetic Training; A Positive Approach to Autism; Understanding and Working with Autism; An Introduction to Adult Protection; Investigating Adult Abuse; Quality, Quality Everywhere; Non-abusive Psychological and Physical Intervention; The Importance of Consistency and Positive Behaviour Management; Understanding the Brain, Understanding Autism; Relationship Counselling for People with Asperger Syndrome; Diagnosis of Autistic Spectrum Disorders; Positive Approaches in Managing Behaviour; and, finally, Sexuality and Individuals with Autistic Spectrum Disorders.
As with any business there are frustrations but it seems, in my world, someone, somewhere obviously feels I haven’t got enough on my plate! While I accept that the authorities have a responsibility to ensure young people are properly protected from individuals who may not have their best interests at heart, recent events seem to show they have been taking these measures to extremes. Anyone working with children has to be scrutinised by the Criminal Records Bureau, and that makes perfect sense. If they consider you are fit to work with young people you are issued with a certificate to show the Bureau has approved you to do so.
I would have thought that, as the owner of one of these certificates, I would have been okay but that’s just not the case. In a case of bureaucracy having gone bonkers, I’ve had to apply for Criminal Records Bureau checks on five occasions in the past two years! First of all I needed one for Hillingdon Manor, then I needed another for the college, then another for the residential home, another to cover my work as a volunteer, and yet one more for my roles as a director and proprietor. Now, I’m told that, as a mother who needs to accompany my own child to school, I need another Criminal Records Bureau check! It’s barking mad.
While Patrick and Angelo had been receiving home tuition I benefited from three hours’ respite every fortnight, thanks to a lovely man called Derek Jones, who later went on to work at Hillingdon Manor. However, once we’d opened the school and the boys began their education there, the powers that be saw fit to withdraw the respite care. As far as they were concerned, I didn’t need it any more. Thankfully, though, through a private arrangement, Derek continues to care for the boys for a couple of hours a week after school and this enables me to work extra hours.
Fortunately, Zita regularly babysits for us, which, as you can imagine, is a true blessing. Sean’s mum Coral and her sister Pam have now moved down this way and, with Coral, Pam and Zita’s babysitting, Sean and I are able to attend a good number of meetings and to have just a little time to ourselves.
I still love to dance – that’s my safety valve. If I didn’t have that I’d probably end up in a psychiatric unit myself! Thursday nights are my nights for tap dancing from 8 p.m. to 10 p.m. and on Saturday mornings I dance for an hour. I actually went away for a tap-dancing weekend last year, staying overnight in a hotel. I felt really sick before leaving but my friends insisted they would drag me there if necessary because they felt I really needed the break.
Prior to leaving, I left Sean with a list – don’t forget this, don’t forget that – and I was really nervous on the way there but, once we’d arrived, I really enjoyed myself. However, I didn’t sleep very well because I was worried about how Angelo was coping without me around. I was awoken at 6 a.m. by a telephone call from Patrick to tell me he couldn’t sleep and wasn’t it time I came home because he’d just had to change Angelo’s bed? Thanks, Patrick!
HACS runs shopping trips for carers once or twice a year, which I really enjoy. Last time, we went to Brighton, but I always have to ring home about five or six times to make sure all is OK. I have to laugh at our situation sometimes because if I didn’t I’m sure I’d go potty. Often I feel quite lonely living in a house with people with autism. I have to look after them, sort out all the bills, savings and finances, everything – though Sean now takes charge of all the shopping. I also get support from my sister even though she still lives in Middlesbrough. She reckons I couldn’t have married and had a regular family because I would have been bored out of my head; that I’ve thrived on challenges, that I could do anything I put my mind to.
Do I ever think, Why me? Only for a second. The thing I crave most is just a little peace and quiet – and some sleep! When Angelo was much younger I felt as though I was on automatic pilot owing to the lack of sleep. I felt really weird. Drained. I was always exhausted, as though my shoulders were dragging on the floor. At first it was hard to function with day-to-day life.
Some mornings I still get up at four o’clock, having not gone to bed until past midnight, but I think my body’s got used to it now. On the odd occasion that I do sleep well, I feel worse for it when I wake up – like a zombie, even more tired. Sometimes I feel like rolling up in a ball and hibernating for a few months to recharge my batteries.
Recently, I’ve been having weird dreams. I see myself holding a baby – a little girl, I think – and I keep putting her down but, when I turn around again, I can’t see her and I get really stressed and cry. Then I find her again, hold her in my arms, then I put her down again and the process is repeated.
Sometimes I wake up sobbing. My sister is into dream analysis and she thinks there could be two reasons I have this recurring dream: first, I’m thinking about the baby I miscarried; second, it could be my ‘other baby’, the school – how I’m getting stressed out as we look towards securing its future.
We’re still having a very difficult time with Angelo. He’s been replicating what we believe is the sound he’s hearing in his ear – a consistently high-pitched whining noise, and he’s driving us all barmy going ‘eeeeee’ all the time. Even when he’s at school Angelo constantly replicates the noise for hours on end. It goes right through you; it must drive everyone around him mad. One night I just couldn’t sleep because of the noise, so I went downstairs, put cotton wool in my ears and tried settling down on the sofa – but I could still hear him. It must be so tiring for Angelo, too, and stressful.
There have been some encouraging signs though. We have recently acquired a little dog who we’ve called Chanel. Patrick had repeatedly asked Sean and I if he could have one and eventually we gave in. She’s a little Jack Russell-Chihuahua cross and Patrick loves her to bits. Angelo, though, was not at all keen to be sharing his home with this four-legged interloper at first. If Chanel walked into a room, Angelo would walk out. Nevertheless, Chanel persistently followed Angelo around until eventually she won him over, which was lovely. Animals such as dogs can play a huge part in breaking down barriers with children on the autistic spectrum and it’s wonderful to see Angelo now accepting Chanel, even to the point of allowing her to sit on his tummy while he gently strokes her ears.
I’m not a material person – although sometimes I feel as though I’d love to have a Ferrari with a number plate that says ‘BYE BYE’ on it! That said, I feel I have grown as a person over the past few years. I always felt as though people such as doctors, psychologists, teachers and the like were all far superior to me – they were better educated and cleverer – but I’ve since realised they are just ordinary people and, nowadays, I am far more comfortable around them.
Sean will soon take up a post as a barrister, and they sometimes host barristers’ dinners at Inns of Court. I would have found this quite intimidating a few years ago but now I feel really comfortable in their company and I get on well with them all.
As for friends of my own, well, I split them into two categories – my ‘autistic’ friends and my ‘normal’ friends. I can talk to my autistic friends about the problems I have
been facing and experiencing, and I know they will understand where I’m coming from because they’ve been in similar situations. That’s not meant to be disrespectful to my ‘normal’ friends, it’s just that they can imagine only certain experiences.
Sometimes, even at home, things do get on top of me and I feel my head is about to explode. Once or twice it’s gotten so bad I’ve got in the car and driven around a bit, then parked up and had a cry. Often it’s just silly things that get on top of me. It’s like a build-up of tiredness and frustration and a lack of sleep.
Occasionally, I feel I’m being taken for granted at home, and that’s quite hard to cope with. On the last occasion, Sean and Patrick were having a bit of an argument. The trouble is, neither of them likes to give in and they were at loggerheads. Then Angelo started walking around on his hands and knees, making a wailing, droning sound, and I remember thinking, What the bloody hell’s going on around here? I’ve just got to get a little peace!
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!’
Chapter Fifteen
Sean
It 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 becaus
e 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.