Authors: Anna Kennedy
The following day a health visitor called round to see us but, surprisingly, she didn’t have any information on autism for us. Instead she gave us an information sheet with names and addresses of help groups and voluntary societies. She remarked at how amazing Sean and I were, in that our marriage had not suffered in spite of all the problems we had already faced over the previous six years with Patrick. She told us she knew problems of such magnitude often split couples up and I remember desperately hoping that our marriage would be strong enough to withstand all the extra pressure it now faced.
After another depressing meeting with Mrs Porter, we learned that Angelo would need lots of help – at least two years of intense psychotherapy – and she stressed the need for us to prevent him from performing all his habitual rituals. By now, I was not feeling too good. I was beginning to feel like a wind-up toy, my brain filled to saturation point, but at least Sean and I had a nice romantic evening at a local pub that night, which made me feel a little better.
A couple of days later, though, the cracks began to appear between Sean and me, when he just stopped talking to me, even though the rest of the family were being supportive. I’d been finding it difficult to concentrate at work but the silence from Sean was even harder to deal with, because he was bottling up his emotions. To my mind, he was in denial, but I really wished we could talk it out between us, that we could work together, not only for our sakes but for Angelo’s.
As a child, I would keep diaries but, after a while, I had stopped doing so. Now I just felt the urge to write my feelings down on paper once again. I began writing each day. I guess it was my way of sharing my problems with someone – even if it was just myself.
Fortunately, within a few days, the tension between Sean and me subsided and, after I’d made it clear to him that we would have to work together if he wanted to see an improvement in Angelo, he made more of an effort. Meanwhile, I’d spoken to Ingrid, a trainee social worker from Network 81, a support group of parents of children with special educational needs. She was very helpful and assisted me through the process of obtaining disability allowance.
After a couple more days Sean was in a much better mood, which was surprising, especially since Angelo had had a very disturbed night, not having slept until around 4 a.m. I was absolutely shattered. Unfortunately, the following night he wouldn’t settle again. I found myself getting increasingly tired and cross with him, even though I knew I shouldn’t. Sean eventually snapped, ‘Shut up!’ at Angelo and went up to bed, unable to cope with his laughing loudly and constant running around the room. Angelo eventually went to sleep at 2 a.m. – a sleep pattern that would become all too familiar to us in the years to come.
The less Angelo would sleep, the more hyper he would become. With his seemingly boundless energy and night waking, it was rare to get any decent sleep and often I found myself sleeping on the sofa downstairs. I even took to doing my housework in the early hours, reckoning I may just as well be doing something useful if I was awake anyway. Sean and I were becoming exhausted. Both Angelo’s and Patrick’s disturbed sleeping patterns were having a detrimental effect on us and the resultant levels of stress often made us irritable with each other – even to the point that I wondered whether our relationship could survive.
Jocelyn Phillips worked for Portage – a service that supports parents with strategies in the home – and she turned out to be a great support to our family in the months to come. However, she disagreed with my views on not having Angelo attend Grangewood School and considered that his going to a mainstream school would not do him justice. Jocelyn felt that Angelo needed a specialised way of teaching and that Grangewood School was particularly appropriate to his needs.
What a dilemma!
When Angelo’s diagnosis was confirmed, an appointment was made at the Central Middlesex Hospital for a brain scan and, it goes without saying, there was little chance Angelo would be too happy about it. When a nurse attempted to put glue on the side of his temples in order to attach at least 20 wires, Angelo became very distressed and refused to co-operate – even when I held down his hands and someone else held down his legs he was too strong. It broke my heart to see him so distressed.
In the end it was decided to return to the hospital another time and to complete the scan under sedation in the children’s ward. I was asked if Angelo had been tested for epilepsy, since it was believed up to 50 per cent of autistic children either have or can develop it.
All this uncertainty, the lack of sleep, the worry and strain that we found ourselves subjected to meant that every day resulted in a roller coaster of emotions for Sean and me. It all boiled over a few weeks after Angelo’s diagnosis and resulted in a major argument between us during which I even threatened to leave home.
Don’t let anyone tell you that living with autism is easy. It is testament to our relationship that it has survived so strongly over the past few years in spite of all the heartache and challenges we’ve had to face along the way.
I
t had been a real kick in the guts to learn of Angelo’s autism diagnosis and I remember crying for six weeks afterwards. Sean and I knew nothing of the condition – in fact, my first instinct had been to wonder how long Angelo would live. I didn’t know anyone else who had an autistic child.
So, what is autism? I didn’t like the sound of it. It’s such an ugly, harsh word. Basically, we felt that, after Angelo’s diagnosis, we had just been left to get on with it, since there was very little offered to us in the form of advice or support. Some doctors assumed Angelo’s condition was genetic, though, so far as we were aware, neither Sean nor I had autism in the family.
I realised I had to pull myself together and that feeling sorry for myself was of little use to Angelo, Patrick or Sean. I had a thirst for knowledge and I embarked on a voyage of discovery. The trouble was, the more I found out about autism, the worse the prospects seemed to be. The outlook, in my eyes, was so bleak and confusing. Nevertheless, I remained determined to find out all I could about the subject.
That, however, was not as easy as I might have initially hoped. First of all, I contacted the National Autistic Society, or should I say I tried several times without success. I should point out, however, that nowadays these problems have been overcome. Nevertheless, it was so frustrating trying to obtain knowledge at that time from an organisation that I just couldn’t get through to.
At last I managed to speak to someone who told me she would forward some information to me and she recommended a useful VHS video that would be enlightening, which I paid for over the telephone.
Six weeks later, I had heard nothing from them. No video, no information. Coral rang the society a couple of times to hurry them along on my behalf. They apologised and, eventually, the leaflets and video arrived through our letterbox. Watching the video for the first time was a truly traumatic experience. In fact, after just three minutes, I ejected it from the player and felt as if I was going to be sick – not because of the children featured but because of the severity of their condition. Some were rocking, others swaying from side to side. No disrespect to the children, but I couldn’t help thinking that, if this was all Angelo had to look forward to, well, that would be pretty hard to bear.
It got to the stage where I couldn’t even keep the video in the house – I preferred to lock it away in the boot of my car. Meanwhile, Sean didn’t want to read any of the information leaflets we had received. He simply buried his head in the sand and it seemed he was unable to accept that a child of his could have such a condition, which made me feel very alone in trying to come to terms with our situation.
Sometimes, even now when I’m at home with three other people, I can feel so lonely. Everyone seems to be doing their own thing. Patrick could be talking to himself upstairs in his room; Angelo, bless him, is in his own world, maybe playing on his trampoline in the garden; while Sean might be studying or using his computer. He has a Masters in IT, which means he spends a great deal of time fiddling around on the computer at home. For that reason I’ve always hated computers – to my mind, they are like ‘the other woman’ in Sean’s life.
Because I wasn’t computer-literate at the time, I didn’t have access to the internet, although I had been able to find out a certain amount through my work with Health Call, a doctors’ answering service. The deeper I dug, the more I found out, but sometimes that just added to the confusion. There were so many different therapies, most of which claimed to help but were very expensive, and we had no idea which way to turn for the best. At least, I thought, Angelo has a bigger brother to help look after him when he grows up a bit more. Even at this time I had convinced myself that Patrick would eventually grow out of his own problems.
I knew Angelo was still the same Angelo we knew and loved, but I found myself observing his strange behaviour more and more. In fact, I frequently spent ages just staring at him. He would often just spin himself around and around, and was, seemingly, a happy boy, although his moods were interspersed with tantrums. Patrick had tried to interact with him in his own way, blowing bubbles for him and playing on the seesaw, even reciting nursery rhymes coupled with clapping at the end of each rhyme.
The National Autistic Society’s literature had highlighted the traits of people with autism such as ritualistic, repetitive behaviour and poor communication skills, and that, as very young children, sufferers don’t tend to point to something they want but will lead you to it, and this was particularly apparent with Angelo.
Ros Blackburn is a prime example of how autism can be discovered by accident. Some years ago, Ros’s parents thought she was deaf because she didn’t speak and didn’t seem to hear. Even their doctor confirmed she was deaf, then, as he went to write down his diagnosis, he made an error and crumpled up the paper, the noise of which Ros obviously heard.
Ros is now a very high-functioning young lady who goes around giving talks about her condition. She finds it difficult to read and is unable to make her own bed, but, if you speak to her, you would probably not realise she has a problem.
Ros is very articulate, although she still doesn’t like people to come too close to her. In fact, a movie called Snow Cake (2006) stars Sigourney Weaver as a character based on Ros. Weaver spent some time with Ros as she prepared for her role in the film and I think she played the part really well. Ros was one of the first people with autism that I heard speaking at a meeting later on our voyage of discovery – and seeing and hearing her gave me real hope for the future.
Patrick had quite stilted speech, very literal. If you tried to hurry him along by telling him to pull his socks up, that, quite literally, is what he would do. I’d always told Patrick he should be careful of cars when crossing the road. One day, when he was standing on the side of the road with me, he looked right,
then left, then just ran out into the middle of the road, causing a motorcyclist to take evasive action as he screeched to a halt before calling me a stupid *@!*!!
I grabbed hold of Patrick and shouted at him, ‘What did Mummy say to you? I told you. I said you mustn’t cross the road when cars are coming!’
‘But, Mummy, you didn’t say anything about motorbikes,’ he replied.
Although they are both on the autistic spectrum, Patrick and Angelo are so different. I had one child who had limited speech and didn’t want to be touched, while I had another who wanted to be touched and kissed, and didn’t have such limited speech.
I discovered that some children with severe autism have no speech whatsoever, no eye contact; they may head-bang, maybe they never even say ‘Mum’ or ‘Dad’, and I can’t think of anything more hurtful to a parent than never to hear those words. At the other end of the spectrum, sufferers may be boffins, really clever people who look down on people they consider not to be as clever as they are.
Although autism is four times more common than cerebral palsy, it remains a relatively unknown disability. It was first diagnosed in 1943 and is now known to affect more than half a million people in the United Kingdom.
It’s a developmental condition that affects the way the sufferer’s brain processes information. Sadly, there is no cure, although much can be done to ensure the person affected can be helped to develop the more basic skills they will require in everyday life, not least being able to communicate more appropriately with other people.
Because a child with autism usually appears like anyone else without a disability, it is often assumed by strangers that a related tantrum is either down to naughtiness or poor parental control when, in fact, it is neither. This was something I had almost become used to whenever I was shopping with Patrick or Angelo, particularly when they had been refused something they wanted. If only people really knew the true reasons why they sometimes behaved in such a fashion, then, perhaps, they would be more sympathetic.
People with autism often have many difficulties in life. Research at the time claimed autism was displayed by one in every 250 people to some degree. More recently, however, figures have suggested the ratio was one in a hundred until a report released by Cambridge Research Centre in 2008 revealed that one person in every 59 in the United Kingdom has some form of autism. It is more common amongst boys than girls and has now been recognised as the fastest growing serious development in the world.
More children were diagnosed with autism in 2008 than with diabetes, cancer and AIDS combined. Despite this, in the same year, the National Autistic Society released results of a survey that suggests that the majority of local authorities in England are still failing adults with autism, and criticised the ‘astounding postcode lottery’ in provision. Amazingly, it was found that just one local authority in England had undertaken a head count of the number of adults with autism in their area. In addition, 64 per cent of councils said they did not have a named team or individual responsible for autism, in contravention of Department of Health guidelines.
Difficulties with social interactions, social communication and imagination are apparent in people with autism. These three characteristics are collectively referred to as the triad of impairments. For a child to be diagnosed with autism, they have to present a certain number of difficulties in these three areas.
Broken down, social interaction refers to difficulties experienced with social relationships, maybe appearing aloof or indifferent to others; social communication problems would display themselves as difficulties in verbal and nonverbal communication such as not understanding gestures, tone of voice or facial expressions; and imaginative difficulties are apparent as an inability to develop play in an imaginative way or a limited range of imaginative activities.
A child with autism will, like a child with Asperger Syndrome, display resistance to changes in routine or exhibit challenging behaviour; they display indifference to others and will join in play only if an adult insists and assists them.
An autistic child may display little or no eye contact or speech; is often locked into inappropriate routines; some never become toilet-trained; they will guide an adult’s hand to whatever it is they want; they will not play with other children; they will speak incessantly about a single topic such as a washing machine or vacuum cleaner; they will copy words parrot-fashion; will behave in a bizarre manner; will handle or spin objects, will laugh or giggle inappropriately; but will be able to do some things well and quickly, particularly if the task does not involve social understanding.
They will require specialised education and structured support if they are to maximise their skills and reach their full potential. They face myriad frustrations in life, particularly
when they want to say something but someone else stops them from saying it, or when they want to say something but don’t know how to express themselves, or when something doesn’t happen when they expect it to.
That’s why it’s so important to have strong boundaries and structures in place so they can feel safe and begin to develop trust with others. They need to be taught to be more independent in order to develop their self-confidence and to be reassured that they do have something to offer, and that they can make a difference by reaching their academic, social and emotional potential.
People with autism have difficulty in displaying empathy and imagination; they often avoid direct eye contact or shaking hands; and may feel uncomfortable being in close proximity to others and are particularly averse to being in crowded places. They may answer rhetorical questions when in class groups with little understanding of colloquialisms.
When Angelo was diagnosed, my knowledge of other forms of autism such as Asperger Syndrome had been of limited importance to me because, as far as I was concerned, wrongly as it turned out, it didn’t affect our family. My quest for information about Asperger Syndrome following Patrick’s diagnosis uncovered the magnitude of the conditions in the autistic spectrum disorders. We hadn’t realised the scale of autism, but it soon became apparent we were not alone in caring for a loved one whose life is blighted with the associated difficulties.
I learned that Asperger Syndrome was a form of autism that affected people in the higher-functioning end of the autistic spectrum. The more I found out, the more I began to understand
the difficulties Patrick faces in life. Most people have a natural ability to look at someone else and be able to tell whether they are happy, sad or angry. They can guess their age or their status and read the signals given off by the other person. It’s something most of us take for granted but, for someone with Asperger Syndrome, this is often too difficult to do. As a result, communicating and interacting with others is often beyond them.
People with Asperger Syndrome rarely have the severe learning difficulties associated with autism, and that’s obvious when comparing Patrick to Angelo. Patrick’s language skills – his vocabulary and more fluent speech – are far superior to Angelo’s, although when people speak to Patrick, as is common with people with Asperger Syndrome, he doesn’t always take much interest in what they say to him.
Many children with Asperger Syndrome are placed in mainstream schools but often they find themselves subject to teasing or bullying. That said, some cope well, achieving good progress, some even going on to further education and employment. Others, like Patrick, just cannot cope and require more specialist, individual attention. However, they are often of average or even above-average intelligence but, sadly, even today, there are few educational facilities for children with the condition.
Despite his condition, it’s clear Patrick is not stupid, although he has often convinced himself that he is. As with many who have the condition, Patrick’s obsession with dinosaurs and trains has practically made him an expert in each field and it was heartening to read that, because of this side to the condition, many like him can go on to study or work in their favourite subjects.