From the age of 12, writer Rhiannon Lucy Cosslett helped look after her severely autistic brother. Like hundreds of thousands of other young carers, she took on major responsibilities early – but says it made her the person she is today.
Being a young carer makes you different from your friends. This is one of the first things that you learn. You visit their houses after school and notice how different their lives are from yours. Their houses seem tidy, quiet and peaceful.
Mine was the opposite.
My younger brother is severely autistic. He was diagnosed when he was four, but we knew there were issues before then.
Even as a baby, he wouldn’t stay still when you tried to hold him – my mum, Anna, said he was like an octopus wriggling in her arms.
As a toddler, he was hyperactive. He tore through our house, leaving chaos in his wake. He would climb furniture and banisters, empty cereal packets and cartons of orange juice on the floor, scribble on the walls.
He didn’t sleep. He didn’t talk. We knew our lives would be changed by his autism, but we didn’t realise by how much.
I am six years older than my brother, and cared for him along with my mum until I left home in North Wales at 18 (my parents separated when I was 12).
It’s been estimated that 700,000 children and young people across the UK, some as young as five years old, are caring for family members. But the true number is likely to be much higher, as many are hidden from view.
I know what an isolating and difficult experience it can be – growing up, I had no idea there were so many other children out there in similar positions, caring for ill and disabled relatives.
When you are a carer, it can be hard to relate to your friends, with their “normal” lives.
You have responsibilities. You have to grow up very quickly. You can’t muck about and be so carefree.
I certainly didn’t misbehave – I felt that my mum, who did the lion’s share of the caring, had enough to deal with, without me being naughty as well. My brother barely slept and she was exhausted most of the time from getting up more than four times a night. I would care for him while she snatched an hour of sleep and, as I got older, for much longer stretches so that she could go to work or spend the evening with her then partner.
I did have moments where I felt quite separate from my classmates, who were still having their dinner cooked for them when I was preparing meals from scratch. On the other hand, being able to cook stood me in good stead in the long run, as did many other skills and traits I learned from being a carer – responsibility, compassion, empathy, selflessness, multi-tasking, patience and generosity.
A sense of humour was a must, especially when it came to toilet trouble. Mum and I cleared up enough poo for a lifetime (this may be why, at 31, I am still not sure how I feel about having children).
It taught me basic plumbing – give me some string and a coat-hanger and I can fix a broken toilet – but also how to laugh when you’re up the proverbial creek. You had to, because otherwise you would cry. Then again, we did lots of that too.
We had two floods and a fire, and endless weird and embarrassing moments. People loved my brother – he was a very cute child with a huge goofy smile and big blue eyes, but his behaviour was – how can I put it? – unpredictable.
Sometimes when we were out and about he would take his clothes off and run around while we chased after him, waving his trousers desperately like a flag. He was always falling into lakes and rivers, or reaching into people’s bags of chips and plucking them out.
He had no sense of fear so you had to be hyper-alert. He once ran into a field with a bull, which was terrifying. Thankfully we got him out in time.
He also had tantrums in public and people would stare and make comments. I always confronted them when this happened – being a young carer made me quite feisty. I had a keen sense of injustice from a young age and that has translated into my journalism, particularly when it comes to the hardship and discrimination that disabled people often face.
Schoolwork was difficult as sleep was disrupted, and the house was really noisy all the time.
I learned how to concentrate even if all around me was total chaos. I developed a love of reading and tore through several library books a week. In a way, being a carer is what made me a writer. When things were difficult, I needed a way to escape, and reading provided that, but it also made me interested in people.
You learn so much about humanity when you are looking after someone vulnerable and you need empathy, a vital skill when it comes to creating your own characters.
Teachers didn’t always understand. I’m not surprised that Carers Trust Wales have found that many children who are carers are not known to local authorities. Adults often don’t think to ask, or when you try to explain why your homework is late, or indeed why you are, they will just say that you are making excuses. I’ll never forget the horrible reaction of an after-school drama teacher who refused to accept that I had missed a rehearsal because I had to look after my brother.
Nevertheless, for every nasty person there were many more kind ones.
I had a couple of close friends who lived nearby – Hannah and Kate – who have always been there, and would keep me company when I was on my own with my brother at home because mum had to work or pick up a prescription. (Hannah is now a mental health nurse and says her experience looking after my brother helped inspire her to pursue that career.)
As I grew older, I opened up to more friends about my home situation. They were all really supportive, treating my situation as though it were no different from anyone else’s. Sometimes people act as though they are uncomfortable around my brother because of his strange seeming mannerisms and noises, but they never did. They helped me realise that there is no such thing as a normal family.
My mum trusted me, and in many ways that worked out quite well – as long as I made sure my brother was OK, I could have people over and she could benefit from finally having a bit of a social life. Often friends would help put him to bed, and I remember being particularly touched to find my friend Sam reading him a bedtime story.
Leaving home was hard. By that time, my brother was in a special school, staying overnight during the week and coming home at the weekends. Yet I still felt like I was abandoning my mum, who was finding it increasingly difficult to cope.
My brother had grown very big and strong and she couldn’t control him any more. He had also developed epilepsy, which needed careful management and supervision, and his obsessive-compulsive disorder meant that taking him outside was more and more difficult. She became very isolated.
I missed them both terribly, because although things had been hard at times, we were a family.
I cried for two weeks, and I think the sadness and the exhaustion are with me even now.
Although I have a good job and a happy life, there are some days where I still feel very low.
When my brother was nearly 15, things became so difficult for my mum that he went into school full-time. He is now 25 and lives in a care home. He is very happy there – his carers are brilliant, and I see him as much as I can for walks on the beach and trips out for lunch.
I am grateful for how lucky we are – not everyone receives such good government support. If the help hadn’t been there, I might never have left home. I certainly wouldn’t have gone to university or have established a career as a writer.
Whenever I meet young carers, I want to give them a hug and tell them that I know what they are going through.
They should be given more support – both practical and respite care. I certainly would have benefited from some counselling.
No child’s education should suffer because they are looking after a family member, they should be encouraged by adults, and given the help they need.
Sometimes I am asked if I wish my brother had been “normal”. It’s a strange question, because it’s essentially asking me if I wish he were a different person.
Obviously, I wish that he did not have to suffer, which he does as a result of his epilepsy and anxiety. But I love my brother for who he is, and looking after him has been the defining experience of my life.
Caring has made me strong as well as sensitive. It has made me a kinder person and given me the motivation to fight for social justice. But most of all I feel lucky to have felt such profound, unconditional love for my little brother. That has been a gift.
Anyone can be a father but to be a Dad to a severely autistic young person is quite something else. So, to all the unsung heroes who care for autistic loved ones and especially to the Dads who care for profoundly autistic young people and never have a day off from worry or strain. HAPPY FATHER’S DAY. We see you.
“What about me?” Enhancing the Lives of Siblings of Children with Disabilities by Avidan Milevsky Ph.D
There is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the siblings of those with disabilities. As I have argued in multiple venues, sibling issues in general is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life. This neglect of sibling issues is even starker when examining the attention given to siblings in overall disability services.
To begin shedding some light on this problem, allow me to present several common issues faced by siblings of children with disabilities:
SIBLINGS MAY DEVELOP MULTIPLE DIFFICULTIES
Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress. These problems are known as internalizing issues, not obviously visible, and may be an attempt by these siblings to hide their problems; they may want to be well-behaved or protect their already overburdened parents. Other issues that these siblings may face are peer problems, as well as a lack of engagement in extracurricular activities and academic issues as a result of limited time and money.
SIBLINGS BECOME OVERLY RESPONSIBLE AND INDEPENDENT
Considering the attention given to the child with the disability, siblings may neglect their own issues. In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves and their sibling, developing duties similar to those of a parent and overlooking their need to act like children. This responsibility may seem positive to parents but may actually be precursors to emotional distress.
SIBLINGS MAY FEEL NEGLECTED BY PARENTS
The family focus on the child with the disability may take away from the attention desired by the sibling. Time spent on medical and therapyappointments for the child with the disability limits the amount of time parents can spend with the other siblings resulting in their feeling neglected. Furthermore, parents may spend a great deal of emotional energy on the child with the disability leaving little emotional energy to support the sibling.
SIBLINGS FEEL IN THE DARK FROM PARENTS AND SERVICE PROVIDERS
Siblings may have similar questions about the sibling with the disability as do parents but have little information or resources available to them. During doctor visits, they are often left in the waiting room. Parents may want to keep well siblings away from the treatment environment or may want to protect the privacy of the sibling with the disability leaving the well sibling feeling in the dark about what is going on with their sibling. They may have many unanswered questions about their sibling including whether their disability can be transmitted and what will be in the future. With little or no information, siblings may develop their own ideas about what is happening, often much worse than is actually true.
SIBLINGS EXPERIENCE MIXED EMOTIONS
Sibling may experience a range of emotions about their situation. They may feel guilt wondering if they caused the disability of their sibling or they may feel guilt about why the disability did not happen to them. They may feel fear about the health of their sibling or about what may happen to their sibling in the future. Siblings may also experience resentment, anger, or jealousy towards their sibling considering the attention and resources expensed on their sibling. An additional common feeling is embarrassmentas a result of the behaviors and appearance of their sibling. In some cases the embarrassment may be so great that they disassociate from the sibling with the disability. They may claim to be an only child or may not invite over friends so that they do not have to answer questions about their sibling.
SITUATION PROVIDES OPPORTUNITIES FOR SIBLINGS
Beyond what is known as the pathogenic perspective, which highlights the difficulties associated with having a sibling with a disability, this difficult circumstance may also offer some opportunities for siblings. These siblings often develop certain positive characteristics such as self-control, cooperation, empathy, tolerance, altruism, maturity, and responsibility as a result of dealing with their family situation. They may develop loyalty and a protective attitude towards their sibling. In some cases these siblings use someone’s attitude about special needs as a test for screening friends and mates. Their involvement with their sibling may even lead them to choose future occupations in the helping professions.
I see first hand at my university the great strides that have been accomplished in offering an environment that offers everyone a chance to succeed regardless of limitations. I am inspired by the great work of our university’s office of disability services in caring for the needs of all students. This great work is being replicated in many industries and institutions across the country. Focusing on some of the unique issues faced by siblings of individuals with disabilities is an important step in the continuous work that is being done in disability services overall. I hope to highlight this focus in future columns about variations in how siblings experience the above outcomes and some recommendations that can be used by families and service providers in helping these brave and burdened siblings.
Mothers of Children on the Autism Spectrum Experience High Levels of Fatigue and Mental Distress
Studies indicate that the demands placed on parents caring for a child with autism contribute to a higher overall incidence of parental stress, depression, and anxiety and adversely affects family functioning and marital relationships compared with parents of children with other intellectual, developmental, or physical disabilities. Mothers of children with ASD, in particular, appear to face unique challenges that potentially have an impact on their health and wellbeing.
Parents of children with an autism spectrum disorder (ASD) are increasingly involved in the provision of early intervention and learning activities to promote positive outcomes for their children. However, several studies have documented that parental stress as well as a lack of time and energy are barriers to providing early intervention activities. Because autism impairs social relatedness and adaptive functioning, parent stress can decrease helpful psychological processes and directly influence the parent or caregiver’s ability to support the child with special needs. Consequently, understanding factors, such as lack of energy or fatigue that may limit the capacity of the parent to assist in promoting their child’s development is critical.
A study published in the journal Autism examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children ages 2-5 years with ASD participated in the study and completed questionnaires assessing level of fatigue, parenting self-efficacy (belief about the ability to parent successfully), children’s behavioral and emotional problems, sleep quality, parent support needs, and overall physical activity. The study found that compared with mothers of typically developing children, mothers of children with ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction.
These findings were somewhat expected given the additional caregiving demands, parenting challenges and pressures of managing family life when raising a child with an ASD. Likewise, It is also probable that symptoms of depression, anxiety, stress and worry (body tension, increased heart rate and rumination) can be mentally taxing and contribute to, or exacerbate fatigue. The researchers also note that it was not surprising that poor sleep quality was associated with higher levels of fatigue given the large amount of research indicating that inadequate sleep and poor sleep quality is associated with a range of physical health and wellbeing difficulties. Parents of children with ASD are at particular risk of sleep disruption and poor sleep quality owing to the high rate of sleep problems in their children. Parents reported that their child waking was the primary reason for sleep disruption. For other parents in the study, stress, anxiety and not being able to wind down were stated reasons for sleep disruption.
What are the implications of this study? The findings clearly indicate the need for interventions to specifically target parental fatigue and its impact on families affected by ASD both in the present and longer term. In addition to interventions targeting child sleep problems, parents are likely to benefit from psycho-education about fatigue and its potential effects on wellbeing, parenting and caregiving. This includes information about strategies to minimize and/or cope with the effects of sleep disruption, increase health and self-care behaviors, and strengthen opportunities for social support. It is well established that social support is protective of optimal parent wellbeing and, therefore, is an important component of any intervention to address fatigue and wellbeing of parents of children with an ASD. Parents with limited assistance to share the daily demands of caregiving and family life are likely to be at greater risk of fatigue than parents with more support. For parents with limited support, there might also be fewer opportunities to engage in self-care behaviors that are likely to alleviate or protect them from fatigue.
From a clinical perspective, professionals working with families of children with an ASD should be aware of negative effects of fatigue in addition to other wellbeing difficulties, such as stress and anxiety. An assessment of the presence and severity of the physical, cognitive and emotional symptoms of fatigue, as well as the perceived impact on daily functioning, mood, relationships, parenting and other aspects of caregiving is important. Lastly, future work in this area should involve the development and evaluation of information resources and intervention approaches to assist parents of children with an ASD to manage fatigue and promote their overall wellbeing. The longer-term benefits for parents in terms of strengthening their overall health, wellbeing and parenting should also be a focus of research.
Giallo, R., Wood, C. E., Jellett, R., & Porter, R. (2013). Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism, 17, 465-480. DOI: 10.1177/1362361311416830
There’s a Bafta on the sideboard in Henry Normal’s dining room, overlooking the sea in Brighton. Normal was the writer and producer behind some of the best, most groundbreaking comedy on television. The Mrs Merton Show, The Royle Family, Gavin & Stacey and The Mighty Boosh, to name just a few, were all his programmes.
For 17 years he would commute to London to work at Baby Cow Productions, the company he co-owned with Steve Coogan. He is 61 now, and retired from the high pressure of managing a production company. But he’s still working. A Radio 4 monologue has been adapted into a one-man show about being the father of 19-year-old Johnny, his only child, who is autistic. At the end of every performance, fathers queue up to talk to him about their own autistic child. Often, they’ll cry. Normal might cry, too. Tears come easily, he says. “Sometimes on stage I have to pretend it’s a dramatic pause, but in reality I’m trying not to cry.”
Now he’s written a book with his wife, Angela Pell, a scriptwriter, about life with Johnny. It’s rare to hear from the parents of children at the severe end of the autistic spectrum. Dramatists tend to focus on the high-achieving end of autism. As Normal acknowledges, “Our lives are not dramatic enough to be in a drama; not comical enough to be a comedy.” Johnny, for instance, communicates in very few words; he’s never had what you’d call a conversation.
It’s rare, too, to hear from the fathers of autistic children. The many books about autism are usually written by mothers, something Normal would be the first to agree is as it should be. It was, after all, Pell who was at home with Johnny, especially in the early years when he was slow to talk or walk or play; when he bit and hit because he couldn’t manage; when he seemed unreachable, in his own private hell.
But in A Normal Family, he has given fathers a voice, including the guilt he felt when he buried himself in work. When he first brought Johnny home from hospital, he can remember saying, “You are going to have a brilliant and beautiful life …” The book is about how he grieved for the life Johnny isn’t able to have – and learnt to celebrate the one that he does.
It’s the kind of book they wished they’d had when they first got Johnny’s diagnosis. “You get so many books that are about the big picture,” says Normal. “But you’ve still got Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday to get through. You’re living day to day. I don’t think we knew what a week would look like with Johnny.”
Johnny isn’t expected home until later – he is at a local authority college that focuses on special needs. Yet his presence is felt throughout the house. “If he was imminent we’d be rushing around like meerkats,” says Normal. “We always have to think two moves ahead. Just making sure everything is sorted and Johnny will be OK.” We’re sitting in the living room, which is full of Johnny’s paintings. Next month they are being shown in an art gallery in Brighton.
When Johnny gets home his routine will be the same as it every other college day – a bowl of cornflakes, painting, iPad time, dinner with his parents, bath, stories, bed by 9pm.
Johnny is 19 now, 16st and 6ft-plus. He is unlikely ever to have an argument with them, or have a girlfriend, or leave home.
Pell says there have been “times in the past when I’ve thought about killing myself and Johnny. I’ve driven along the seafront with him and thought, for a split second, about turning the wheel and heading straight over the cliff.” It’s a taboo thing to admit, and brave, too. She explains: “I feel like I’m his translator. In the early days I worried that one day I wouldn’t be around for Johnny. Nobody knows him as well as I do. Nobody, apart from Henry, loves him as much as I do. Sometimes ending it all felt like the easiest …” Solution? “Yeah.”
Early on they searched for a cure. “Getting ‘rid of’ [it] was, of course, how we felt then,” says Pell. “Not knowing anything really. Not understanding then that Johnny’s autism runs through every cell of him. It’s in his DNA – wanting to banish it is akin to wanting to banish him.” A course for parents with autistic children in America called Son-Rise helped the most – instead of trying to “fix” Johnny, it was Normal and Pell who adapted. The course taught them how to engage with Johnny and play with him as he was, not how they wanted him to be. “They told us, ‘You start from nothing and everything else is extra.’ ” At home they took turns to play with him intensively all day, every day, for four years. “He learnt that he could depend on us,” says Normal. “And that we had his best interests at heart.”
These days, Johnny is calmer, happier. For his parents it’s a balance between accepting Johnny how he is and encouraging any progress. They can go on holiday now (“Airports are handled like the D-Day landings,” says Normal), celebrate birthdays. Christmas, though, is ignored. Johnny finds it too overwhelming, says his father.
Normal was born Peter Carroll in a working-class family in Nottingham. His mother died in a car accident when he was 11. He thinks if she hadn’t died he would have ended up being a greengrocer, just like she had been. After school he became an insurance broker, but he used to do performance poetry gigs in his spare time. It was moving to Manchester and falling in with the likes of Coogan and Caroline Aherne that helped him get his break.
I wonder what it must have been like for Normal to live in two such different worlds – high-profile banter with Coogan, James Corden and Ruth Jones at work, and then come home. “I used to think that I was a bit like Captain Kirk in that I was born on Earth and worked in space. Angela and Johnny gave me a centre of gravity. I knew that this is where I was, and while I was outside I was on a little expedition, and I’d be coming back.”
Normal would have liked more children but Pell was focused on making sure Johnny was OK. She was exhausted, especially early on when Johnny barely slept. It means Pell, who is 12 years younger than Normal, has resigned herself to a solitary old age. “I will eventually become too old and frail to manage Johnny and he will move into supported living arrangements. I will most likely die alone. Johnny may or may not come to my funeral.”
Normal says, “The biggest fear is what will happen when we die. Johnny might survive us for 40 years.” The money he made from Baby Cow has gone into a “war chest for Johnny”.
As we talk it becomes clear that the book is as much a portrait of a marriage as it is of a young man with autism. Johnny sounds profoundly content and much of that I’d put down to his parents’ love for one another, as well as for their son. Possibly Normal is the nervier of the two; certainly, it would be hard to be more calm than Pell.
Normal recalls his wife getting angry only once, when he blamed her for Johnny’s struggles. “She told me if I didn’t like it, I should just go.” He looks crestfallen at the memory. I suspect that the thought of a life without his wife in it was unbearable. “It was so difficult. But in the end, it was us who changed, and that was much more empowering. It was down to Angela and me.”
He looks over at his wife, and we laugh as she offers him a tissue.
‘I SOBBED WITH GRIEF AT MY DESK. I COULDN’T COPE’ Henry Normal on the day he received his son’s diagnosis
A couple of memories jump out at me from when Johnny was a baby. I was changing his nappy once and he struggled and I distinctly remember being pleased. I was particularly aware that here he was asserting his own will. It’s a strange thing to come back to me and I can only think it’s because it must have been so out of the ordinary. This was the first moment I suspected something was different about him.
On a later occasion while I was changing his nappy I spoke to him and all I recall was the look on his face. It was a look of confusion, not mild or temporary confusion but the sort of look you’d expect from an Alzheimer’s patient. It disturbed me. I wasn’t sure what it meant. I wondered if he didn’t like me. Was I doing something wrong? It was as if I wasn’t his dad. As if we weren’t connected. As if we had never met.
With hindsight I now realise that the fact he never raised his arms to be picked up wasn’t standard behaviour for babies. He never crawled; before he learnt to walk he shuffled along on his bottom. Also, he would clench and unclench his fingers, which could have been a strategy to help him feel in control of his environment.
I knew I loved my son. Yet underneath the surface I could feel there was a strange emptiness in our lives. I didn’t understand it and I would never mention it to my wife, Angela. To be honest I was a little embarrassed at the thought that it was me. No, embarrassed is not quite the word – ashamed.
While we were at home we could grit our teeth and get through the bouts of crying, the sleepless nights, the worry about Johnny’s antisocial behaviour and lack of response; but the real problem was when we went out. We had a couple of friends who discuss films and comedy and other trivia couples talk about when they don’t have kids. In many ways they were us before parenthood. But when we visited them in London with Johnny approaching his second birthday it became apparent that our lives were now so different.
Johnny cried continuously and nothing Angela or I could do would calm him. Nothing appeared to be getting through. It felt like the longest night of my life. I was embarrassed. I was confused and frustrated and at a loss. And I did the worst thing I could do. I blamed my wife Angela.
I love Angela to her bones and yet here I was betraying her. Maybe this sounds overdramatic but in that moment I had nothing to hold on to. Angela doesn’t argue, so she took my rant in silence and, driving away from London the following morning, I felt sick inside. I wanted to escape.
I can see why parents with an autistic child often break up. There is a desperation. It felt like I didn’t know who I was. I was lost.
I’m not sure this story would go down so well at a live performance. This is the day I knew something was wrong with my son. This is the day I had to stop pretending it was all going to go away.
Finally, Johnny was seen by a specialist. This would be where we would start to put matters right, I assumed. A woman I had never met before and have never seen since took us to a room without windows. She handed us a leaflet for the National Autistic Society. On the front of the leaflet was a logo of a child crying and the word “incurable”.
It’s not easy to remember the exact words that were spoken that day. The main thrust of the conversation was the triad of impairments. Johnny had problems with “social communication, social interaction and social imagination”. These were not things we didn’t already know but now it was official, and these phrases certainly sounded official. What this all added up to, we were told, was autism.
We were told our child was “mildly severe”. I still don’t quite know what that means.
When we got home I was numb, trying to take it all in. There we were again, alone as a family, like coming back from hospital after the birth, only this time with a task 1,000 times more daunting.
Angela made something to eat. She was very strong and resolved to do whatever it took. She came up to my office to see how I was getting on. I was collapsed over the computer sobbing with grief. “I can’t cope,” were the only words I could say. “You can,” she said. I was more than embarrassed. This is not the image of the stoic hero I’d looked up to as a child. Clint Eastwood as the Man With No Name, seeing all but saying nothing. Showing no emotion, just defiance in the face of overwhelming odds. How could I let Angela down? How could I let my own child down?
I had no choice; I would have to cope. No, it was more than that: I would have to fight.
I’m not sure when I last saw Johnny cry. It was many years ago. Probably when he was about eight and feeling ill. Angela tells me she’s seen him well up since on the very odd occasion when she’ll shout at him, in pain, to stop pinching her lips. When he’s really upset he’ll bite the back of his hand. As he’s never eaten a sweet, other than an occasional mint in the car, his teeth are quite healthy and strong and some bites have been so deep that we have had to put bandages round the wounds.
When he was two it was a different matter. He would hit and bite Angela and me and anyone else who got in the way. Even though it was painful, I decided that I wouldn’t rise to the bait. We never smacked Johnny, although occasionally in those early years we’d shout at him out of exasperation. Always later we’d try to explain calmly but we were never sure how much, if anything, was sinking in.
Up to when Johnny was around ten, if you left him alone for five minutes you were never sure what you’d come back to. Once Angela left him in a room where they’d earlier been playing with red paint. When she returned, it looked like the scene of an axe murder. Another time, returning after having nipped to the toilet, Angela found Johnny had coloured in his private parts with black permanent marker.
He went through a stage of nicking people’s chips right off their plates in restaurants and cafés. We talked to him time and time again, but he would never give us any. Not everyone affected saw the funny side of it.
The only reference I had to autism before Johnny’s diagnosis was Rain Man. I liked Rain Man, but it’s not the Tom Cruise film I’d previously thought would be most relevant to my future. I was hoping for something more glamorous, like Mission: Impossible. Although the title Mission: Impossible did soon start to seem relevant.
I must say, unlike “Rain Man”, Johnny has no savant qualities, though he does have a very good trick where he suddenly claps really loudly and gets us through queues very quickly. It’s worth instigating at the right point in time. We’ve been escorted through airport security before now. They didn’t seem bothered that we might be a security risk. Johnny’s sudden loud claps in the bank are always interesting; bank tellers can get a little nervous.
When we first found out that Johnny was autistic, we looked at everything we could find that might help. We looked into PECS, which sounds like a gym for musclemen but is a picture-based communication system; ABA, which sounds like a boxing association but is a teaching system; and Tomatis, which sounds like tomatoes, but is a listening therapy. We tried oxygen therapy in a pressure chamber, homeopathy, music therapy, art therapy, a gluten and casein-free diet, supplements, omega-12, some weird exercise that took him back to the womb and, of course, swimming with dolphins. Let’s face it, like any parents, we’d have skydived playing the ukulele if we thought it would help. (It wouldn’t help, I’m fairly sure.)
Every Saturday morning I would sit down with my laptop and go through the Google Alerts for autism. I’d read about young autistic kids being helped by dogs or surfing, or suddenly speaking because they’d found an interest in music or art or video games. Angela and I were open to anything. We went to several conferences and listened to lectures on how the brain works and the latest theories on education. We wore our name badges saying “Parent”. We bought the books and DVDs, read the leaflets, the magazines and the web pages.
I have recently had strangers ask about Johnny, saying, “What’s wrong with him?” To which I always want to reply, “Nothing’s wrong with him; he’s autistic. What’s wrong with you?”
Generally, though, I find Johnny brings out the best in people. I know he brings out the best in me.
Johnny will be 20 this month. Angela and I were drinking a cup of tea in bed a couple of weeks ago and Johnny was in the upstairs office, having finished playing on the computer, when we heard him shout to us one word: “iPad.” Nothing else, just “iPad”. We burst out laughing. He sounded like any other lazy bloody teenager. The thing was, this was the first time he had ever shouted for something from another room. This was a good day. You have to celebrate these small victories, I feel, and little by little they all add up.
As I walked down to the beach this December with Johnny, unprompted he declared, “The café is closed.” No one had used this phrase that day; it wasn’t echolalia. No one had asked him a question. It was a genuine comment, perfectly audible and directed at me. This was the first time in his life I could be sure he was voluntarily communicating, verbally, an observation of the world without any outside instigation. Now Johnny is motivated by food and drink, so I’m sure that this was part of the drive, but it was certainly a breakthrough moment. He was comfortable enough with my presence and confident enough to speak.
Occasionally at home, when we sit at the table waiting to be served food, he will sing, “Why are we waiting?” There is certainly an element of fun to the song and to his mum’s mock outrage, which he enjoys. If Johnnyis singing it is quite likely he is in a good mood. I must confess I am to blame for teaching him this song and there have been a few embarrassing times in restaurants when I’ve regretted it.
Johnny wakes up early. Too early for me. Usually between 3am and 6am. Nowadays Angela can usually persuade him to go back to sleep, but he is still ready for breakfast by 7am.
Before Johnny, the prospect of an early night would usually mean sex. Nowadays not even sex comes before the opportunity for a decent sleep. I do a joke sometimes on stage. I say, “Now I’m semi-retired Angela and I get to spend more time together. The other afternoon she said to me, ‘Johnny is at college and we have the house to ourselves. Let’s have sex.’ ‘That’s all very well,’ I said, ‘but when do I get some me-time?’ ”
Now although it’s a joke, it does play to a truth that many parents of autistic kids face. What with planning, preparing and anticipating, or even reviewing or tidying up and putting stuff away, there is never enough time to just chill. Stacking the dishwasher or watering the garden are things I enjoy just for the escape of a mundane task that doesn’t tax the brain. Mindless television or even staring out of the window can seem a luxury at times. Angela told me today that going for a mammogram meant she had a lovely quiet 15 minutes to herself.
This may seem a little over the top and Angela and I both try to take each day as it comes. You never know though when even the simplest of things could present a problem. There was one day when Johnny was about seven; he must have been thirsty. Turning our attention from him for a few moments, we didn’t see him take a bunch of daffodils out of their vase and drink the water. We spent the rest of the day in hospital with Johnny being treated for poisoning.
The biggest problems we’ve had with Johnny’s schooling over the years have been with his hitting teachers, pushing and hitting fellow pupils, or biting the back of his hand so badly he still has scars. He even had a phase of night terrors and Angela did wonder if he’d developed epilepsy, but it was just the transition from one school to another. Nearly all these problems come down to sensory overload. If people get too in his face or sounds get too loud Johnny needs a coping mechanism. We are lucky that his schools and now the college have instigated a quiet room for him; when overloaded, Johnny will choose to go in there, and when he is feeling able he chooses to rejoin the class.
When Johnny turned 16 we were told he wasn’t legally ours any more. Because he’s officially “mentally incapacitated” he became a ward of the state. We had someone from the government visit our home, and they came in, and went to talk to Johnny. The woman asked him two questions, then, realising he wasn’t able to answer, she came and talked to me and Angela. I don’t mind admitting I was scared by this visit. I didn’t know what was going to happen. I had this terrible feeling that our ability to protect and nurture Johnny was no longer in our control. Everything we had put in place to help him seemed under threat. Well-meaning as she may have been, this woman didn’t know my son. Did she even like him?
Even now we are still wondering what this all means. Do we have to ask someone’s permission to take him out of the country on holiday? We’ve been abroad several times and not been stopped at the border. Do we have to ask permission for medical treatment? Well, he goes to the dentist regularly and occasionally to the doctors and nothing seems to have changed. Can we even cut his hair or his nails? Stupid as it sounds, these are questions that have occurred to us over the past couple of years.
How could I tell this woman what our son is like? How can I explain the journey we’ve been on? The challenges he’s overcome, the progress he’s made and continues to make, albeit almost imperceptibly slowly at times? She doesn’t know his routines, the extent of his noise intolerance, his favourite foods, his artwork, the people he gets on with, his love of walking, his trips to the tip with his grandad, his dislike of scarves, his favourite books, his films, his love of music, the fact that, every once in a while, without any warning, he won’t walk on a bare hard floor in bare feet, where he enjoys getting his hair cut, what he can do himself and what he can’t, what he means when he says words that don’t seem to make sense to anyone else. She doesn’t know he will put his arm around you while watching television, that he can swim in the sea, or take his shoes off and walk with you along a beach as though everything in the world was perfect.
I can’t remember what exactly we said at that meeting but in the years since, we have never seen that woman again.
We hosted a music-themed quiz night recently at our home with about 20 friends in fancy dress. Angela was the quizmaster, dressed and made up as Amy Winehouse, complete with fake tattoos and pretend cigarette. We don’t have that many friends round very often as we are never sure if Johnny will cope. We gave him plenty of information in the days leading up to the quiz and got him involved with the preparations. Johnny has at times sported very cool sideburns, so I came up with the idea that he and I could both come as the Blues Brothers.
Angela took some photos and Johnny delighted in getting involved. Over the course of the evening friends and family arrived as Abba, Dr Hook, Ginger Spice, Lady Gaga and others I can’t remember – or possibly didn’t actually recognise. Despite the heightened noise, Johnny wandered around the periphery enjoying the atmosphere. Everyone complimented him and he looked comfortable having his photo taken. Angela and I were relieved, but more than that we were so proud and impressed that he was not only coping but really enjoying the event.
The quiz was to get under way after his usual bedtime, so I asked him if he wanted to go to bed. He confirmed “bed” without any hesitation, so he said a big “good night” to everyone and I took him up the stairs. We closed the bedroom, quietening the noise from downstairs, and I started to help Johnny get out of his costume. “What’s wrong with me?” he said.
He often repeats words and phrases from films and I couldn’t be sure that this wasn’t just a phrase he picked up, but the timing and the nature of the phrase stopped me dead. “What’s wrong with me?” he repeated. It was like time stopped and my head filled with so many things I wanted to say. It didn’t matter whether it was something he was just repeating, I reasoned. Of all the questions or phrases he could choose, why would he choose this one now? There were so many things I wanted to explain to him. There before me in this quiet room was my 19-year-old son, going to bed at 8.45pm rather than joining in with our family and friends in a night of fun and laughter. He looked so grown up now in his shirt and tie. He looked smart and cool and he stood there taller than me, asking the most difficult question in the world. I just wanted to hug him and kiss him like he was a baby again, all 16st of him, but he was a man now. I squeezed his arm and said the only words that would come to me. “There’s nothing wrong with you,” I said. “You’re my son and I love you.”
Johnny got undressed, put his pyjamas on and cleaned his teeth. “Do you want a story?” I asked. “Finding Nemo,” he requested. We lay on the bed and I read him the book. Then I closed his bedroom curtains and said good night. I walked down the stairs and into the living room, where the quiz was in full swing.
To think that as a parent, you have given much of your life over to caring for a profoundly autistic child with no mental capacity, then, when they reach 18, the authorities don’t have to include you in any decision about them is pretty galling. Sometimes the only way you can be included is to fight for something called ‘Deputyship’ or go for a Judicial Review – not many can afford that and why should they…..’
Article from The Times below:
‘Parents of children with autism and other learning disabilities want to use a test case to challenge a law that sidelines families when a child turns 18.
Rosa Monckton, whose daughter, Domenica, 23, has Down’s syndrome, said that although the children might technically be young adults, they lack the mental capacity to make key decisions.
Monckton said she had heard from “hundreds” of distraught families who had been ignored as officials made “terrible decisions” for their children.
Under the Mental Capacity Act 2005, parents who want to be the decision maker for a young adult must ask the Court of Protection for “deputyship” — awarded only in very difficult cases.
Families sidelined by law on over-18s with learning disabilities
Cheryl Joyce, 36, has spent the past eight years fighting for her autistic son, Liam – at the expense of her own mental health
Sitting down alone at her computer at 2am, after an argument with her husband, Cheryl Joyce felt desperate and completely lost.
For eight years, she had desperately fought for her autistic son, Liam, trying to give him the best therapy and childhood possible.
But now, she had reached a point where she felt like the only option was to “end it”.
Staring at the screen at her Merseyside home, the mum-of-three found herself Googling the words: “The gentlest ways to die…”
After numerous breakdowns, thoughts of self-harming and feelings of sadness and anger, she says she had finally “had enough”.
But thankfully, the thought of leaving her young children – something she “couldn’t” do – prevented her from ‘ending it’.
“I knew I needed help when I found myself Googling ‘the gentlest way to die’,” said the 36-year-old. “I had had enough.
“I wanted it over with so I wouldn’t have to carry on feeling like I did.
She added: “I would never regret anything for my son, but years of fighting for Liam almost destroyed me.
“I had suffered breakdowns, considered harming myself and then, the only way seemed to be to end it.”
It was Cheryl’s children, though, who ultimately saved her and kept her going.
“I couldn’t leave them,” said the mum, whose struggles had seen her gain two dress sizes, lose friends and become isolated.
“And as I Googled ways to take my life, a verse popped up ‘I have set before you life and death, blessings and curses.
‘Now choose life, so that you and your children may live.’
The verse is from Deuteronomy 30:19.
She smiled: “I never thought I would have a tattoo, but it inspired me to get one with an angelic symbol meaning ‘Choose Life’.
Cheryl had only ever wanted the best for Liam, who was diagnosed with autism when he was three years old.
But her battle for her adorable boy came with a cost – her own mental health.
When Liam, now 10, was born in 2006 there was no indication anything was wrong.
He was meeting all his milestones; could name shapes, colours and numbers and had a great memory.
“We thought we had a little genius on our hands,” said Cheryl.
“But then he regressed and it was like Liam had been taken away and replaced by another child.
“He was eventually diagnosed with a severe form of autism.
“I remember feeling like the world was attacking me. I was emotional and angry, and was upsetting everyone around me.
“I had an emotional breakdown when I found myself kicking off at a policeman who said I had a bad attitude, which is not me.
“But I felt I had completely lost my identity.”
Cheryl managed to get herself well with counselling sessions.
She got to the point where she and her husband, Tony, wanted to have another baby, partly because they wanted a sibling for Liam.
But she ended up raising a newborn, Isabella, at the same time as she was trying to toilet train a four-year- old son, and deal with his sleep and communication issues.
Cheryl said she ended up feeling “exhausted’ and like a “complete failure”, with Liam only sleeping for about two hours every night.
“I asked for help from the disability social worker but was refused as they said his sleep problems were expected for a child of his age,” she claimed.
“I became severely depressed, not wanting to go out, not getting dressed.
“My job as a government procurement manager was about solving problems – why couldn’t I solve this one?”
After more counselling, Cheryl decided to return to work to give her something else to focus on.
She added: “A few months later, we found a therapy that actually helped Liam, Applied Behavioural Analysis (ABA).
“On his very first session the therapist got him saying 100 words, including mummy and daddy, and helping with other skills such as toileting.
“It gave me hope but was very expensive, costing £60 an hour for a qualified therapist and £7.50-£15 per hour for tutors.”
Cheryl said she and Tony fundraised to help pay for the therapy – and some of the costs for school were covered by the council.
However, she said the couple had to pay for the costs at home – something that became difficult following a change in work situation.
“During this time, my husband was made redundant and had to change job, taking a significant drop in pay, which meant the pressure of paying for Liam’s therapy and keeping a roof over our heads fell to me,” she said.
“When, in 2011, I fell pregnant with our third child, Summer – unexpectedly – my mental well-being plummeted further.
“This time I needed medication as I was starting to have harmful thoughts and every time I tried to come off them, I couldn’t cope.
“And, as much as the antidepressants help with the sadness, they suppress the happiness too.
“I looked around at my beautiful family, the progress Liam had made, I couldn’t feel anything.
“I gained two dress sizes, struggled to maintain myself at work, lost friends and became isolated as people didn’t understand my behaviour.
“I tried to come off the tablets again… and that’s when I thought it would be easier if I wasn’t here.”
Cheryl had previously arranged for Liam to undergo biomedical treatment, a combination of diet, nutritional supplements and detoxification.
However, this was also expensive, involving tests and consultations with nutritional therapists that cost the youngster’s parents at least £170.
Cheryl said there were a number of other potential therapies that she and Tony were unable to consider due to the price.
The mum started writing three years ago as an escape from the pressures and challenges of daily life.
She has recently self-published a novel, The Grass is Darker, about a modern day woman, Danielle, a wife, a mother and a businesswoman, and her struggle with everyday life. Like many, Danielle thinks an affair is the answer.
“I needed to write the book to prove to myself I wasn’t a failure,” said Cheryl.
“To remind me of the strength I have inside. That although sometimes I feel weak, at other times I feel invincible.
“This sort of stress can destroy marriages too but, thankfully, it brought Tony and I closer together – we go for walks up Snowdon to remind ourselves that we are strong and we have a life worth living.
“The battle goes on with Liam but we have now found a wonderful school for him where he can go until he is 25.
“I will never feel angry or bitter towards my boy, but I am cross that every day since he was diagnosed I have had to fight for what is best for him and that shouldn’t happen. I paid with my own health and that can’t be right.”