Understanding of ADHD

• Children in this study identified a range of behaviours similar to those listed as symptoms indicated in DSM-IV and ICD-10. The most frequently discussed types of behaviours were impulsiveness, physical aggression and hyperactivity. Children felt that these types of behaviours were particularly annoying to others.
• Behaviours identified as symptomatic of ADHD were frequently discussed in terms of their positive dimensions by children in the study. Their peers were thought to fear how out-of-control and overwhelming children with ADHD could be. Participants were able to perceive the tension between their experiences of the more negative and more positive aspects of their ADHD-symptomatic behaviours but the majority were not disturbed by this tension.

Medication

• The children in this study had generally positive experiences of stimulant medication. This does not mean they liked being on medication, but rather that they were willing to put up with the ‘annoying’ aspects of taking medication in return for the perceived benefits. Rather than seeing medication as a panacea, children had reasonable understandings of the benefits and limitations of the medication.
• The children associated their tablets primarily with helping to improve their social and disruptive behaviour and, consequently, relationships with peers (as opposed to improving their school work and academic functioning).
• Although side effects of the medication such as problems sleeping and reduction in appetite were commonly experienced, this did not make up a major theme of their discussions.
• All children interviewed felt they needed to be on their tablets; older children were more likely to be looking ahead to a time when they could manage without tablets.
• All children in the study believed medication to be the most effective available treatment for their ADHD symptoms, but they also understood that a diagnosis of ADHD and effective drug treatment did not mean that they were absolved of responsibility or of agency for their behaviours.

Experience of stigma

• One of the most strongly stated desires communicated by this group of children was for better public understanding of ADHD. Children felt this would create empathy for their situation and relieve them of some of the stigma of negative assumptions attached to a diagnosis of ADHD.
• Children reported experiences of stigma as a direct result of taking tablets; however, experiences of stigma as a result of ADHD diagnosis and symptomatic behaviours were far more frequently expressed. Feelings of being different and alienated were also stronger around diagnosis and ADHD behaviours, than around the need for medication.
• Stigma associated with a diagnosis of ADHD and the attendant behaviours was experienced through:

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  bullying and name-calling by peers

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  negative assumptions made by peers, peers’ families, teachers and relatives

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  being treated differently by peers, peers’ families, teachers and relatives.

• Close friendships were mentioned as an important protective factor against the initiation and/or continuation of fights that arose as a result of bullying. These friendships were mentioned as frequently as, or more often than, medication, as factors that helped children to restrain their impulse to fight and/or to continue fighting.
• The children in this study reported that their experiences of stigma resulted in a lack of self-esteem and low self-confidence. They reported less frequently the experience of stigma associated with their medication.

Perceptions of effective non-drug interventions

Interviewees were less likely to identify spontaneously effective formal non-drug interventions for their ADHD behaviours (such as CBT or parent training) but they did identify some key aspects that helped them or they thought might help them. These included:

• participation in sport
• better public understanding of ADHD (the children reported that this would be likely to result in less bullying and less fighting)
• close friendships
• better understanding from teachers of the needs of children with ADHD.

Impact of tablets on the children’s perceptions of personal agency

The children in this study did not appear to be ethically compromised by their experience of taking stimulant medication. They were able to express personal agency and a willingness to take responsibility for behaviour associated with their ADHD. The children were also able to express appropriate moral evaluations of difficult social situations.

Experience of services

In view of the distress many children experienced in relation to an ADHD diagnosis, ADHD behaviours and tablets, only one child in this study viewed their clinical encounters within child psychiatry services as having a therapeutic component. While no child had any strong complaints about services, several children reported not being able to get in to see a clinician and feeling that they would like more time with a psychiatrist. Some children felt that clinicians didn’t really care about them. A majority of children felt appointments were routine and boring, and that appointments were primarily for medication checks and for getting prescriptions.

ADHD diagnosis and medication in the context of other life stressors

• Although ADHD and medication were important in the lives of this group of children, with various daily reminders of the burden of mental disorder and the need to take medication, when compared with a list of other stressors, ‘ADHD diagnosis’ and ‘taking tablets’ were not listed as the most important worries. Younger children worried the most about friendships and global warming, while older children were most concerned about exams and friendships. While friendships and academic performance are often difficult for children with ADHD, these concerns are similarly shared by other children, as demonstrated in a study of a large cohort of UK children who identified them as their primary sources of anxiety (Alexander & Hargreaves, 2007).
• In the current study, a diagnosis of ADHD was ranked as more worrying than taking tablets for ADHD by almost all children. Results from this study suggest that children have relatively more positive experiences of medication, as compared with more negative experiences of ADHD diagnosis and behavioural symptoms.

Personal account (A)

My mother comments that she immediately saw many differences between me as a baby and my three older sisters; however she ascribed this to me being a boy. As a baby I used to bite my mum so much that she had bruises all down her arm. I was obsessed with things involving movement, especially cars. Apparently I used to look at the main road watching the cars for hours at a time, murmuring my first words – ‘car’ or ‘bus’. When I first went to nursery I refused to interact or even share a room with the other children, instead playing with cars in another room, and reacting aggressively to anyone who tried to interfere. I frequently had tantrums and made no friends. My mother, who is a paediatrician, feared I may have obsessive-compulsive disorder, but at this time did not follow it up. My main other problem was sleep; as a child it would regularly take me a long time to switch off and get to sleep, and this has stayed with me my whole life. (I now find I can function well on only about 5 hours a night, possibly due to my hyperactivity, and I regularly use a herbal mix to help me get to sleep.)

Starting at my first primary school was a mixed experience. I did not make friends easily and although I was fairly bright I did not apply myself to my work with any commitment or enthusiasm. The older I got the more trouble I got into: answering back to teachers, lying to other children and performing stupid pranks to try and gain credibility. When my parents moved away from the area and I started a new school I had even more problems. I did not like the school or my teachers. I was rude, lazy and aggressive and I lied constantly; as a result I was very lonely. I struggled to make any friends in the new village and it was left up to my mum to try and fulfil my constant demands outside school.

When I was 7 years old and had only been in the new school for less than two terms, my parents took me to see an educational psychologist. I completed a few tests and had a short interview with him. He concluded that I had some obsessive tendencies, anxiety and esteem problems. He recommended to my parents that I move to a smaller school with smaller classes. This meant going to a private school, where I was relatively happy for 2 years; I enjoyed boarding and found myself able to build good relationships with other children. I also really enjoyed sport, and eventually captained the cricket and rugby teams. I still got into trouble a fair amount, but the headmaster was very patient and not punitive.

My fortunes changed when a new headmaster came to the school. He and I did not see eye to eye from the start. He was a military-styled bully who suspended me on the second day he was there for getting into a fight with his son (who received no punishment). From then on he assumed that I was an idle, lying bully, and in time this is what I became. Driving him mad became a source of great enjoyment to me; I was suspended on numerous occasions, though he never carried through the expulsion which he constantly threatened. His punishments were severe and eventually he took away any self-respect I had left when he forced a confession out of me for something I hadn’t done, in the process helping me to lose a good friend. At the age of 12 my behaviour had become enough of a concern for a visit to a private paediatrician, which my mum arranged. She had been fairly sure for some time that I had ADHD and contacted a paediatrician in London. He immediately diagnosed me with ADHD, and wanted to prescribe me methylphenidate; however my family history of epilepsy was thought at this time to be a risk, so I was not given it. I was not offered any other treatment either medical or behavioural, and my mum, who by this time ran a paediatric ADHD clinic, didn’t feel like she needed any support at home.

My senior year was perhaps one of my best. We were a very small group (only ten in the class), and my teacher made a huge difference to my experience of school when he realised that a lot of the time I did not ignore people but in fact did not hear them. I had small plastic drainage tubes (to treat glue ear) inserted into my ears, and this had an immediate and positive impact. When I got to the end of my senior year I passed my exams and went off to public school.

My headmaster, who described me as his ‘hair shirt’, had one last punishment in store for me however, ensuring that an absolutely terrible reference would get to my new school before I did. The effect was so obvious it was as if everyone had been told that I was someone to watch out for. I made no friends, did not apply myself to either study or sport, and hated the other activities we had to do. The place was like a prison and the routine suffocating. After 6 weeks I walked out of school and into a local shop where I shoplifted an item in obvious view of the camera. When I was called before the headmaster the following day I hoped I was going to be expelled. However I got put on ‘headmaster’s jankers’ instead, a dehumanising experience involving complete and highly visible exclusion from normal school activities and about 4 hours of manual labour per day. After half-term I refused to go back.

I then went to the local comprehensive, where I started with quite high hopes (I knew some people from my time in the two local primary schools). However, I was teased relentlessly as a ‘poof’ or ‘posh boy’ for my time at private school, and my teachers thought that my ADHD was an excuse for needless bad behaviour and laziness, and as such I wasn’t offered any treatment or intervention for it. Once again this became a mould I fitted into: I ignored my studies completely, was often in trouble, bullied other children, stopped participating in the sport I had previously enjoyed, and on several occasions I took flasks of alcohol into school and would drink during lessons. I still lied compulsively, and stole frequently from other children and from my parents. I had also started smoking when I was 11 and this became heavier; I regularly skived off school to smoke, drink or get high. I quickly put on weight, and the bigger I became the more I ate and drank, until at 16, despite being below average height, I was almost 16 stone. I barely passed my GCSE exams, and though I was admitted on to an A level course, I stuck it for less than a term before I decided to leave school.

When I left home and got my own place, there were many times when I felt much more content. I started to make some good friends, with whom I still remain very close today. However, drugs and alcohol were still an increasing problem. I worked in pubs and clubs and would get drunk most days; I experimented with many drugs – mostly pills and LSD. I frequently drove while in a dangerous state, and although I had many friends, lying was still a problem. I got bored with the jobs I did very quickly – one lasted only a single day, and the most I managed was 6 months. Eventually things fell apart completely following a disastrous relationship. I returned home depressed and feeling like I had failed. My father and I did not really see eye to eye at this point; he could not understand that I had no interest in going to university, we argued and I ended up leaving again.

For the next 3 or 4 months I lived a nomadic existence; I wandered round the town with a friend who was in a similar position, and we stopped at various places to buy, sell or take drugs, and slept on sofas or in the park. Though this experience was cathartic in some ways, and I built some very strong relationships, after some time it became clear that I would have to do something with my life. My mum, who had stayed in regular contact with me, told me that my dad had managed to get an interview for me in London. I was afraid of leaving the life I had created for myself, and London seemed like a very frightening prospect; however, a close friend managed to talk me round and I went for the interview and got the job. My sister in London offered me a room in her house.

I had not thought about my ADHD for a long time, and I had not made the connection between it and dropping out of school, not committing to a job and my extensive drug and alcohol abuse. (Only later did I discover that the disorder was also associated with my frequent trips to casualty: I have broken both my funny bones, have cracked ribs and have fractured my skull, as well as having many injuries from cycling accidents. I also had five car accidents in my first 2 years of driving.) However, signs of my ADHD came back to me in my new job, which was very repetitive laboratory work. After about 2 months my careless mistakes – due to inattention – were causing a problem, and I moved departments and left a month later. I fell back on my pub and club experience, which left me short of money and exhausted. I started drinking and using drugs heavily again.

Eventually I went to see a psychiatrist in London, a very compassionate and patient man, whom I spoke to for about an hour, and who I really opened up to. He described me as an underachiever and said he thought I was depressed, for which he offered me drugs, but I refused them. Instead I made the decision to go back to college to try and complete my A-levels. I had a fantastic experience on the course and excelled in my studies, managing to get into a top university. I found disciplining myself at university very difficult due to the lack of structure and availability of drugs and alcohol. In my first year, after another painful relationship ended, I found myself drinking alone most days and neglecting my studies. I barely passed the end of year exams, and this was sufficient to scare me into working harder. Towards the end of my second year I met my current girlfriend, who helped me cut down on my drinking and knuckle down to my studies. We are now considering marriage – she has made a massive difference to my life and I have great faith in our future.

My educational re-birth has taken me through a degree and masters and I am now in the final year of a PhD. This most recent experience has been a great challenge requiring long-term commitment, organisation, concentration, and a huge amount of reading, research and analysis. However, since giving up alcohol over 2 months ago, I have a renewed enthusiasm for the project and am confident of a successful conclusion.

I have never taken drugs for my ADHD, though I have no doubt they would help me. At times the symptoms have impaired me greatly, and they remain a challenge, as does my depression. However I have managed to overcome these challenges through other means. There are many things that I do which help greatly: regular exercise is a must, and without it I get restless and depressed. I also ensure that I reserve plenty of time for creative activities – I have played the guitar for many years and love composing, performing and recording music. I also love writing, something my current work lends itself very well to, and I have already had three papers published. I had a very difficult experience at school and there are many things I would do differently if I could. However, I am currently happier than I have ever been and enjoying a very demanding new world of work, in which I use my difficult experiences at school to try and effect change in the systems and structures of our institutions, particularly with those children who are marked out as difficult and suffer as a consequence.

It is only in the last 5 years, since I have been working on ADHD academically as part of my graduate studies, that I have started to consider the role it may have played in my life. Previously I had never acknowledged that there was a causal or explanatory role for the disorder. I did not use it as a means to explain my behaviour at school, and I felt as indifferent to my diagnosis as I did to the demands of teachers. My perspective now, which is a combination of personal experience and research, is that ADHD represents a complex bio-cultural construct, which is contingent on the influence of medicine and genetics in explaining life problems, on the examination of individuals in terms of deficit and dysfunction, on limiting and competitive academic environments, and, in my case, on my mum’s knowledge of the disorder. Although it offends my sense of personal agency to do so, I can acknowledge that the symptoms associated with ADHD can be very impairing; even harder to acknowledge is that the effects frequently bypass my conscious control. I still take offence when anyone uses the disorder to explain any of my actions; even though I am limited by the symptoms, I do not think they explain my behaviour, and my academic work now can be read partly as an attempt to push the boundaries of what ‘someone with ADHD’ may or may not be capable of. As such, I have, whether passively or actively, always resisted the label. I do recognise, however, that the principal factor that has kept me from some of the more extreme outcomes of the disorder has been good fortune, which many people with ADHD will not share with me.

I am very fortunate in having a supportive family and friends. As well as my girl-friend, I have a very loving family around me – my mum, in particular, worked tirelessly to make me happy as a child, and I would love to be able to give her back her sleepless nights and tears of concern. I was fortunate in my parents both being doctors, because they could afford to send me to fee-paying schools, and could help me out when I was working in crappy jobs; and if it hadn’t been for my sister putting a roof over my head when I moved back to London then I may never have gone, and may never have started the ball rolling back to a happy and fulfilling life.

Personal account (B)

I realised that I was different from other kids when I was at primary school. I remember having both the desire to do really bad things and then acting them out, like poking my mum in the eye with a pencil or ripping up the book she was reading. I really struggled at school with reading (because of my impulsiveness and also because of dyslexia which was only diagnosed when I was an adult) and used to steal money from my parents to pay other children to read the books I was supposed to so that I was able to tell the teacher the story. I thought I was evil inside and took an overdose when I was about 8 years old because I thought my whole life would be bad and nobody seemed to take my concerns seriously. I was not treated for the after-effects of the overdose – my parents seemed to be in denial about it. I tried to run away from home on several occasions.

By the time I entered secondary school I had a reputation as being one of those ‘bright but naughty’ kids, which is what I guess most kids with ADHD were called then. I gravitated towards similar kids and started experimenting with soft drugs and alcohol at around 11 years old. My only love in life was sport, and I swam, cycled, did athletics and surfed. I enjoyed high-risk activities, and rode around on older boys’ motorbikes, started taking hard drugs and had regular sex by the time I was 13. I didn’t listen to my teachers’ cautions and stopped attending school because I found it too difficult and either went to the beach to surf and have sex, or hung around town shoplifting and drinking. I got cautioned by the police several times. I often got into physical fights both in and out of school and started carrying a knife. I never really remember being satisfied with what I was doing. I got pregnant but didn’t follow it through, and chronically under-achieved at school.

My parents complained that I was too difficult to control, and they now say that they nearly separated because of my bad behaviour. My father had a terrific temper and we often got into verbal and physical fights. When I finished school I left home and drifted through a number of manual jobs, not ever being able to complete the tasks required of me. I met up with some travellers and bought a bus in which I travelled around the country financed by selling drugs. I developed a serious heroin addiction and had to steal a great deal to pay for my habit. I took lots of different types of drugs: LSD, opium, tranquillizers – just about anything I could get my hands on. I made quick and silly decisions; for example, I often stole cars and drove while drunk or drug-impaired. I got involved with credit card fraud and worked in a topless bar when I was sober. I spent a brief time in prison on drugs-related charges too. I had a problem with authority and was consistently defiant in my attitude to life. My self-esteem was very low and I took stimulants to control my weight after quitting heroin in a rehabilitation centre. I also tried to take my life again and had to be resuscitated, which led to short-term seizures. At no point during this period was it suggested that I should see a psychiatrist.

It was not until I was in my 20s that I received professional and personal help. I can put my success as an adult down to a few influential people in my life. They saw my potential and put in place the appropriate help and support to enable me to succeed. One of them helped me through a period of depression in my 20s, when I was institutionalised and given electroconvulsive therapy. I went into counselling and saw psychiatrists for 4 years which helped me sort out many issues. The other saw the potential in the poetry I wrote and convinced me to go to university to study English literature as a mature student with extra support for my dyslexia. I graduated with a first class degree and went on to study for a masters degree. Eventually I met someone at university who also saw my potential and only seemed to bring out the best in me. He is now my husband.

When our son Isaac was diagnosed with ADHD I realised that I had displayed many of his behaviours as a child myself (see personal account D below). I continued to have an issue controlling the amount of alcohol I drank, and had a problem with my temper, especially during premenstrual times. I was frightened I was going to physically hurt my child when I lost my temper, so my GP suggested I try SSRIs for pre-menstrual tension. These worked really well, and I still take medication daily. I did however continue to indulge in high-risk behaviour, which led to a serious motorbike accident that has left me disabled. A few years ago I stopped drinking alcohol because I finally realised I only drank to get drunk; but I almost immediately developed problems with anxiety and mild obsessive-compulsive disorder. My GP doubled my dose of SSRIs, which has helped a lot. I have also recently stopped smoking cannabis on a daily basis – something I had done for nearly 25 years.

I realise now, from the stories my father has told me about his behaviour (being in trouble with the law, under-achieving at school, oppositional defiance, alcohol abuse, and so on), that he also probably would have had a diagnosis of ADHD if he was a child today.

With all the support I have received from counsellors, psychiatrists, friends and my husband I now have a successful professional career and have been married for 10 years. I believe my own insight into ADHD helps me to be a better mother to my own child, and is helping him achieve his potential without the struggles I faced.

Personal account (C)

When I was diagnosed with ADHD I was about 8 years old and when I was told I had ADHD I didn’t have a clue what it was or what it stood for. All I knew was that it was called ‘ADHD’. I do not think any life experiences I had before I was diagnosed led to the onset of the condition, I just believe that it is DNA-based – someone else in the family has or may have had ADHD.

I go to a private clinic for help with my ADHD; they originally diagnosed me and I go there every 6 to 8 months to see a consultant. From what I can remember not a lot of treatments were discussed with me, except different types of medication. I found that to start with the medication I was given, which was Ritalin, was not effective in controlling my bad habits and behaviour. We had to go back to the clinic more often over the years to try and get my medication sorted and get the right balance and also the right type of medication. After going through all of this process the clinic finally managed to get the medication right when I was about 14; I know I have to take a mixture of different types and strengths of medication. But now I am on the right medication my ADHD has got better in my mind. I have stopped all the tics that I used to do and I find that I am a lot calmer than I was. However, the only problem I have with taking my medication, Concerta XL, is that my body has built up a large tolerance to it because I have been on it for so long, so I have to have come off the tablet every weekend and have medication called Dexedrine.

Due to my medication being an expensive drug and a dangerous one if it is misused, my parents and I had many problems with my GPs. One of the problems was that they were not willing to pay for the drug and also some of them did not know what the drug is like so they did not want to administer it in case anything went wrong and they lost their job because of it. The other main problem was that most of the time GPs did not have a clue about ADHD. Because of this me and my parents got to have a better understanding of what ADHD is, and most of the time I just think that the GPs need to know more and also have a better general knowledge of what ADHD is.

I found that my ADHD had a big effect on my education in many ways. When I was just diagnosed and for a long period of time after, until I managed to get the medication balanced, I used to be aggressive at school. I also used to get in a lot of fights because when I got wound up I became aggressive because of my ADHD and I found it hard to control my aggression. I was also very disruptive in the classroom as I used to call out in class often and I was easily distracted. However, as I managed to get the medication right and as I moved into upper school and progressed through year 9 and year 10 I found that all of the disruptive behaviour in the classroom slowly went away. Since then I have had little problems in the classroom.

Now I have a full understanding of ADHD but there are still some things I have questions about, like will I always have ADHD, will I be able to drive and will I be able to have certain types of jobs? I know for a fact that my ADHD will have an effect on my future life.

Personal account: parent (D)

My son Isaac is now 7 years old. When he was born I breastfed him on demand. He shook his head and threw his arms around continuously which made feeding him difficult. My breastfeeding counsellor described him as ‘fussy’ and demonstrated how to swaddle him to prevent his arms from moving. This helped to control his writhing both when feeding and when he slept in bed with my husband and me at night. At 6 months old he attended a crèche on a part-time basis. When he was 18 months old the crèche began asking if there were any issues at home they should know about because he had become increasingly aggressive towards other children, displaying biting, punching and other violent behaviours.

Within a few weeks of this conversation my husband and I moved to the Philippines to begin new jobs. Looking back now I realise that Isaac never took well to changes in routine, and the move overseas was probably quite disruptive for him. He continued being aggressive and bit relentlessly any people who cared for him. He attended a Montessori pre-school, and the teachers often said how different he was from other children. His head teacher said that he showed no signs of socialisation, as if he’d never been exposed to other children, even though he’d attended a crèche in the UK for over a year. Other children did not want to play with him outside of school because they would often become injured or hurt from his robust play.

My husband and I made many trips to our Australian GP in the Philippines for minor family health problems. When I finally mentioned that I had concerns about Isaac’s behaviour, he said he’d been waiting for me to say something for a long time. He immediately told us that he thought Isaac had ADHD and could refer us to a specialist paediatrician in Australia for an assessment. I had suspected that Isaac had ADHD from all the reading and research I had done on the internet, so I felt relieved that I was not imagining things.

During this time my marriage began to take the strain of a child who would want to be played with continually and was often violent. Isaac did not like it when my husband and I talked to one other, and would physically try to separate us. He constantly moved from one activity to another, and displayed increasingly impulsive and reckless behaviour. He climbed at every available opportunity and would not respond to discipline. His impulsivity presented as punching a dog, running after cars, eating dog faeces or head butting me when I read stories to him.

I took him to Australia when he was 3 years and 3 months old for an assessment. My husband and myself, and Isaac’s teachers, completed a test before the consultation. (I later learned this was the Conners’ rating.) Travelling to Australia on my own was very hard with a hyperactive and impulsive child. His behaviour was often exacerbated by environments with a lot of stimuli. I lost him several times at the airport, and he even disappeared off the end of the baggage carousel. Isaac’s assessment by the Australian paediatrician resulted in a diagnosis of ADHD; he was described as being at the ‘extreme end of the ADHD spectrum’. It was recommended that he take medication, but we resisted. We spent another year attempting to modify his behaviour, trying as many alternatives as possible to medication. During this year he continued to be impulsive, lacked attention and was violent – he punched a child’s teeth out at school and was aggressive to his teachers.

When Isaac was 4 years and 4 months, a clinical psychologist assessed him and described him as having a range of problematic behaviours: fidgeting, climbing, being always on the move and easily distracted, having difficulty sustaining attention, being talkative, violent, aggressive and defiant. He averaged one accident a week. He liked routine and found transitions (for example, returning to school after the weekend) difficult. My marriage was becoming increasingly strained, so we decided to try medication and Isaac started taking methylphenidate. It seemed like a ‘miracle’. He was able to focus, remain calm, play without being aggressive and make friends for the first time. He displayed slightly more anxiety immediately after taking the medication, but was able to tolerate it. He started on a low dose that was increased after 6 months. He now takes a modified-release preparation.

We returned to the UK in 2005. Since Isaac started the medication we have never looked back. Isaac does continue to be very challenging, and is clearly a very complex child. He has learning difficulties, finding it very difficult to produce legible writing and is significantly below the national average for reading. In addition to ADHD, Isaac also displays some autistic spectrum behaviours, though not enough for a formal diagnosis. We all regularly attend our local CAMHS, and Isaac has assessments from an educational psychologist who visits his school. I am not very impressed by the support we get from CAMHS. The psychiatrist weighs and measures Isaac, but cannot engage with him very well. I also had to ask about parent-training courses, rather than be offered them. When I asked about behavioural management strategies, no concrete examples were given, so I bought myself a copy of 1-2-3 Magic, which has helped a huge amount.

Isaac is a really intelligent child, who is humorous and quirky. Adults think he is really interesting, but his peers find him strange, and he is constantly bullied at school. He recently started talking about killing himself and ways he may do this. Again our local CAHMS service were not very helpful with ways in which to address these issues, instead we got help with writing a ‘social story book’ from other professionals in the field whom we have met.

Isaac channels a lot of his excess energy into sport and enjoys rugby, karate, rock climbing, gymnastics and skateboarding. He wants to be a stunt man when he grows up! For us parents he is excellent company and constantly asks questions and spends time thinking carefully about the answers. He shows a natural aptitude for science and constructive activities. Isaac still needs a lot of routine, continuous behavioural monitoring and moderation, a reward system for good behaviour and incentives to keep him on track. We learned all of these skills by reading lots of books on the subject and doing online research. We joined a few email support groups for parents of children with ADHD which have again provided lots of resources. There are no local support groups for parents of kids with ADHD in our area. Our biggest challenge now is to maintain Isaac’s interest in school and keep his self-esteem as high as possible as he struggles with formal literacy skills and bullying in a mainstream school.

Personal account: parent (E)

I am the mother of a 15-year-old boy with ADHD (see personal account C above), who also has oppositional defiant disorder, a sleep disorder and vocal tics. From early infancy he was very active, never settling well to feed, and would only sleep for short periods. As soon as he could crawl he was into everything; we bought a playpen to put him in so we knew where he was, but he started to stand on his toys to climb over the top. Once he was walking we were unable to leave him unsupervised; he would climb over the stair gate and out of his cot, and would run everywhere. By the time he went to nursery school we had had many trips to casualty with our son for various injuries.

At nursery school he was very disruptive, constantly on the go, never wanting to share anything, playing in an ‘over-the-top’ way, not knowing when to stop, and alienating the other children so no one would play with him. This carried on into reception and years 1, 2, and 3, where he was also very disruptive in class, would not settle to work and was constantly fidgeting with anything he could get his hands on. By this time he was constantly being physically bullied, coming home with cuts and bruises. He was never invited to parties or out to play, and he became socially isolated. He had developed very low self-esteem, anxiety, poor social skills, vocal and physical tics, and learning difficulties. He would have panic attacks if put in a strange environment, and he self-harmed. His sleep pattern was totally out of the window – he would be up 15 and more times a night, running round the house barking like a dog. He was physically aggressive to me, kicking, punching and lashing out. He would fly into a rage that would last sometimes 2 hours or more; on some of these occasions we would have to physically restrain him, even resorting to sitting on him, just to try to stop him from harming himself or trashing the house. He would frequently destroy his toys, clothes and his room, even tearing curtains from the wall and pulling the fitted carpet up. We learnt not to take him to the supermarket, which resulted in one of us going late at night on our own. We gave up clothes shopping in town, and would only take him in for shoes or a haircut. He once threw a huge tantrum in a department store; I walked out and left him lying on the floor under some clothes, and a security guard stopped me and asked if I had forgotten something! He became the child of nightmares, the child that you thought you could not possibly have, because we were ‘sensible’ parents!

We had great difficulty disciplining him, not because we did not want to, but because we had tried everything and anything that our friends suggested: sitting on the stairs, no toys, no telly, bed early, no playing outside, no treats. Nothing worked, he just shrugged his shoulders at us. We had reached breaking point, our marriage was suffering, and our other younger son was upset; he started to have night terrors and began pulling his hair out, resorting to hiding in a cupboard when his older brother was in one of his ‘rages’.

By the time our son had reached the age of 7 and a half we had become increasingly concerned by his uncontrollable behaviour at home and at school. I raised my concerns with his teacher about his behaviour and his inability to concentrate, and also about the constant bullying he was receiving at school. We agreed that he may have a learning/behavioural disorder. I did some research into childhood disorders, contacting NHS Direct for information. They sent me literature on ADHD, and I read the book that it recommended (Understanding ADHD by Christopher Green); I thought, ‘this could have been written about my son’. I was actually relieved that there could be a reason for all of his ‘problems’, and it was not us being bad parents. I showed the book to my son’s teacher and she offered to write to my GP supporting my concerns. I took this letter, together with a diary I had started to keep of my son’s behaviour, to the GP. He listened and agreed to refer my son to the local Child, Adolescent and Family Consultation Service (my son had just turned 8). However, they refused to see him because he did not meet their admission criteria; they were only taking ‘emergencies’ at the time, and because he was not displaying suicidal tendencies, he was not considered an emergency. They suggested that I should attend a ‘child behaviour management’ course instead, which when I contacted them had no spaces. My GP then referred our son to the same service ‘out of area’, but they too were unable to see him.

I was given details of a private clinic that specialised in ADHD and also took NHS referrals from GPs if funding was in place. My GP agreed to refer my son, and applied for funding from the local health authority. After 6 weeks of not hearing anything I contacted them directly myself. After describing the great distress that our son’s behaviour was causing him and everyone around him, they agreed to fund him, as they were unable to provide a service for him locally. During this period the school had requested an educational psychologist to assess him; she agreed that he required further ‘specialist’ assessment, and she supported his referral to the private clinic.

The clinic diagnosed our son with ADHD, oppositional defiant disorder and other comorbid conditions. We were offered various strategies to help cope with his behaviour, some very useful. The consultant suggested that our son should have a trial of methylphenidate. We decided that we would like to research the medication route before agreeing to follow this course of action. After much discussion, my husband and I decided this was the best way to offer our son some sort of ‘normal’ childhood. Our son was started on Equasym (5 mg every 4 hours), and there was an improvement in his concentration levels almost immediately, and he was also much calmer. The dosage had to be slowly increased and we found that it was effective for 3 to 3 and a half hours; he was therefore experiencing ‘peaks and troughs’. We had difficulties with the school as they refused to give our son his medication, insisting that I went and gave it to him. He got to the stage where he had to take medication before he went to school, at first break, lunchtime and then after school. Our GP at this time was fairly supportive, although he admitted that he had no knowledge of the condition, and was happy to be led by the guidance of the clinic, and my experience as a mother. It was suggested by the consultant that we try Ritalin SR, which my son took early morning and at lunchtime, followed by regular Ritalin in the early evening. This combination proved effective for approximately 6 months, during which time his sleep pattern was constantly disturbed. We also had problems with his appetite – it took him about 2 hours to eat a meal. The consultant suggested that we try melatonin to help get him to sleep. Our GP (we had moved house by this time and changed GPs) refused to prescribe this medication, saying, in front of our son, that the drugs were very expensive and he had his budget to think of. We moved to a different surgery where all the GPs were very supportive, and happy to prescribe under the guidance of our son’s consultant. They remained supportive for 5 years, until we moved house, and had to change surgeries again.

Ritalin SR became less and less effective. The consultant felt that he had become tolerant to this form of medication, so it was decided to change him to Concerta XL, which would provide him with a sustained dose for approximately 12 hours. It was also decided at this time to introduce him to clonidine to help with his oppositional defiant disorder, tics and also to help him sleep; he had a small dose before school, and then a larger one an hour before bed. This medication regime proved very effective for a considerable time, but as my son grew, so did his tolerance to Concerta XL (at this stage he was taking 108 mg, plus 10 mg of Ritalin at lunchtime and 20 mg of Ritalin after school). By the time he was 13 and due to start upper school his medication was not as effective as it had been. The consultant suggested that we ‘wash out’ his medication every school holiday (every 4 months), and this worked well for a year and a half.

Our son is now 15 and 6 feet tall and we have had to change the medication regime again. He is currently on the following on weekdays: 50 mcg of clonidine and 108 mg of Concerta XL on rising; 20 mg of Ritalin after school and 125 mcg of clonidine 1 hour before bed. At weekends he takes 50 mcg of clonidine and 15 mg Dexedrine on rising; 15 mg of Dexedrine at lunchtime, 10 mg of Dexedrine at teatime and 125 mcg of clonidine 1 hour before bed. This regime is proving extremely effective at present, and he displays no signs of sleepiness, and is doing well at school – far better than we ever thought possible. He takes reduced dosages when he does any sport, as the adrenaline helps him to self-medicate.

My son has remained at the private clinic, where the staff are extremely supportive; the provision of telephone support, offering the opportunity to speak to a consultant when needed, and even adjusting medication over the phone have proved really valuable. There is an educational psychologist who is able to offer advice, and he recently went through our son’s GCSE options with him; they also have a school liaison officer who is able to offer advice to teachers.

We have always encouraged our son to take a very active part in sports because we found that he was able to expend some of his energies that way. He has been a member of a swimming club since he was 4, and is now county standard, training for approximately 8 hours a week. He has been coaching the younger children at the pool and is really good with them. He also had karate lessons for 4 years and has done very well; we found that karate benefited his coordination and self-discipline tremendously. We also found that by encouraging our son to take part in these sports, and also by being able to achieve in them, it has helped his self-esteem greatly.

We learned not to put him into situations that he was not able to cope with, like going to the supermarket or into town. We also learned to try and focus on the good behaviour, to give praise, and to try and ignore as much of the bad/annoying behaviour as possible. By doing this, and also by virtue of the fact that he could concentrate at school, and was not constantly in trouble, we found that his self-esteem slowly increased, the self-harming stopped, and the panic attacks and anxiety abated, only occasionally appearing when he was extremely stressed.

Our son is at his worst and most oppositional in the early morning and late evening, which is before and after the medication is at its most effective. His vocal tics are also at their highest volume. He is quite happy to take his medication; he says he can ‘turn his brain off’. He actually went to school a few weeks ago having forgotten to take his medication – he said it was awful; he was unable to concentrate, he constantly fidgeted and was very disruptive. He only escaped being excluded from school because the teacher recognised he was not his usual self, and when he explained that he had forgotten his medication, she let him off. Without the medication I am certain that our family would not have survived and that my son would have been permanently excluded from school, and worse, be in a young offender’s institution. Instead he has just achieved the highest grade for his GCSE IT coursework and exam.

Our son does not have fizzy drinks, rarely eats chocolate or sweets, and we try to avoid packet/processed food and ‘E’ numbers. He has also taken pure fish oil for several years, and this seems to help with his mood levels; he says that he feels he concentrates better when he is taking it.

However our son is still socially isolated. He does not get invited to parties and he never goes to school discos because crowds and noise are too much for him. He has many acquaintances at school but there is no one close and no one comes to our house to see him.

We have never received, or been offered, support from local NHS child development services, CAMHS or community psychiatric nurses. There are no local support groups and our wider family has not been understanding of our son’s condition and subsequent needs. Our close friends tried to offer us support, but they have children of their own.

The family environment has become easier in the last couple of years, and my relationship with my son has improved – I don’t ‘hate’ him any more for being a horrible child! Instead I am proud of what he has achieved and how far he has come.

Personal account: parent (F)

Before our son was born I believed that we were ‘good’ parents and I was proud of the way we parented our children and met their individual needs; however this soon changed as the youngest of our three children entered the world. We discovered that we had a baby who hated to sleep, constantly required attention and, as he began toddling, managed to destroy everything that got in his way. His tantrums, head butting, fear of enclosed and crowded areas made it impossible to take him shopping. He hated bright lights and loud noises; he was obsessed with his toy cars and lining them up in a certain way and by colour; and he was cruel to the family cat.

Our son’s behaviour concerned us, so much so that he was referred to child and family guidance at the age of 2 and a half. He was excluded from almost every nursery he attended due to his behaviour, and he was admitted into hospital on several occasions for drinking any liquids in sight (he was constantly thirsty). He was the only child on the children’s ward who required his parents to be there constantly because the staff were not able to deal with his behaviour and tantrums.

By the time our son was 7 he had more fixed-term exclusions from school than I care to remember and by age 12 there were services involved that I never knew existed. We sat in meeting after meeting with many professionals including a paediatrician, GPs, psychologists, educational psychologists, a child psychiatrist, staff from early years provision, education welfare officers, social workers, behaviour support workers, special educational needs case workers, a youth offending team, the police, and heads of schools and teaching staff. He was cautioned for arson, charged with theft and would constantly run away from school and not return home until he was found by the police or us.

A child psychiatrist was involved for almost 10 of the first 12 years of our son’s life but failed to assess and address our son’s needs. At no time during this period were the needs of our two older children considered; for example how the abuse, threats and behaviour inflicted on them by their younger brother may be impacting on their young lives, and also how our spending so much time in dealing with our youngest child denied them the quality time they should have had from us.

When our son went to high school we thought it would be a ‘fresh start’ and that the move would provide him with the much needed support he required. However, in the first 6 months we received numerous calls and letters from the school about our son’s behaviour. He was seen by an educational psychologist for special educational needs, and was assessed as having emotional and behavioural difficulties; during this assessment our son was permanently excluded from the school.

For almost 15 months our son was tutored at home but received little if any education because he would abscond before the tutors arrived. It was at this time that we were mistakenly sent a copy of a letter from the child psychiatrist who had written to the school’s educational psychologist and family GP providing his account of our son’s needs. The letter stated that our son’s behaviour was due to ‘parental inconsistency’ and ‘poor parenting’ and that he would benefit from local authority care, that is, removal from the family home.

I had always been taught to respect those in authority as professional people educated in their line of work. But seeing that our son was being failed by so many of these professionals, my respect for them was rapidly decreasing. Outraged by the letter, I wrote a strong response and requested that our son receive a second opinion from another child and adolescent psychiatrist. Within 4 months of making the request, our son was finally diagnosed with severe ADHD, sleep disorder, conduct disorder and moderate learning needs.

I had never heard of ADHD so how could I support my son and how would others support his needs? I learned what I could about the disorder; I undertook training on special educational needs and the law and fought for my son to be educated and treated appropriate to his needs. Because of this he was placed at a residential school outside the county, which was fully funded by the local authority. We demanded that he be allowed home at weekends as we did not want our son thinking that we were rejecting him – he had received enough rejection in his young life.

Over the summer, during the weeks prior to starting his new school, he was prescribed Ritalin for the ADHD and melatonin for his sleep disorder. The changes in our son were remarkable – we now had a child who sat around the table for family chats, took part in family outings and, most importantly, could sit and concentrate for more than a few minutes at a time. We had a happy child with so much love to give and receive.

Things were now going relatively well; our son settled into his new school and I continued to learn more about ADHD in order to support the school in meeting our son’s needs. His medication was administered by the school nurse on clear instructions from me. However, neither the teaching staff nor the school’s in-house educational psychologist had any knowledge or understanding of ADHD. This contributed towards major conflicts; they stated that ADHD was just an excuse for ‘bad behaviour’ and excluded our son from taking part in after-school activities. When he was at home at weekends we began to notice that he was rather withdrawn; he would not communicate and would not show the same love and affection he had done over the summer. When he went back to school I enquired as to the cause and found that the staff were continually changing, which seemed to affect our son’s routine; also, the school nurse was not always on the premises to administer the medication, therefore our son was receiving his Ritalin as and when it suited the school.

Other students learned of our son being on medication prescribed by a psychiatrist and he was called names such as ‘psycho’, ‘crazy man’, ‘nutcase’ and so on, which led to our son refusing to take the medication to treat his ADHD symptoms because he thought it was for ‘psychos’. Things soon reverted back to the old ways; his behaviour was out of control, he was smoking cannabis, drinking, stealing and running away, all of which contributed towards his being permanently excluded from the school. He refused to take any medication apart from the melatonin and we were now left to pick up the pieces and fight for his education.

Feeling somewhat battered and bruised and totally exhausted, I approached my GP who handed me a prescription for Prozac and told me I was just depressed. This was the day on which I finally snapped and told a professional exactly what I thought of his prescription and lack of support for our son. From that day to this I have continued to fight for justice for our son and others like him and their families. I joined several other parents who had a child diagnosed with ADHD to meet for coffee and share our stories. Meeting other parents in a similar situation was like having a release valve to let off steam.

Another placement was found at a school nearer to home with boarding during the week; but this too was short lived as none of the teaching staff knew about ADHD. Once again our son was permanently excluded. (Several months later it was announced on local radio that the head and deputy head of the school had been suspended under investigation due to their disciplinary procedures.)

For children with a special educational needs provision, like our son, it is the duty of the local education authority to draw up a transition plan for ongoing school provision and review it when the child turns 14. All the local services and agencies involved in that child’s care should be invited to the transition review meeting. The local authority must also notify social care, who then decide whether the young person is defined as having a disability. Social care notified us that under the 1948 National Assistance Act our son was not defined as being disabled. We challenged this decision using both the National Assistance Act and the 1989 Children Act and we were successful in our appeal. We then requested that our son be placed on the ‘Children with Disabilities Register’; when this was denied we took the matter up with the local government ombudsman and it was found that our authority did not have such a register. Due to our actions we were delighted that children and young people with ADHD can now be entered on to the ‘Children with Disabilities Register’. We have never received any letters of apology from the local authority and our son received no education from the date of his exclusion at 14 plus.

When our son turned 16 we were told that he was no longer a child and that he was responsible for his own actions. But he was a 16 year old who acted like a 12 year old, who had little education and no knowledge of NHS services, how to claim state benefits, and how to pay bills, shop or clean. Yet he was expected to manage these affairs on his own. The understanding was that I would be copied in to any appointment letters – this way I could assure his attendance. All was fine until a new psychiatrist became involved; the letters stopped arriving, our son failed to turn up one day and due to this the community mental health team (CMHT) decided to close his case file.

It would seem that our adult CMHT had very little knowledge of ADHD or understanding of the needs of those with the disorder and of the impact it was having on our son’s day-to-day life. (We educated our son as much as we possibly could about ADHD; we felt this was necessary to help him understand the disorder, as well as to help him explain his difficulties to others, in particular service providers.) After letters were sent to the CMHT chief executive, the services were reinstated and I was included in correspondence. I believe that this was initiated after we requested that our son be seen by experts who understood ADHD and related disorders. However there has been no continuity with the psychiatrists my son sees and this seems to have had a knock-on effect on him and his willingness to trust new people involved in his care.

My son’s psychiatrist prescribed him antidepressants with no other form of support strategies being delivered. I challenged this and asked why he was not being offered anger management, behaviour management, counselling, therapy and so on, or appropriate medication to treat his ADHD symptoms, since the alternatives he was taking on a daily basis were clearly not working. We felt that our son was still a child by rights, and therefore should have had access to the same treatments and therapies as other children under the care of children’s services. After this our son was prescribed Concerta XL, and the transformation was the same as when he first took Ritalin. Once again we had a son who seemed more compliant, and he started reducing the amount of cannabis he had been using. (When asked why he used cannabis our son explained that he felt ‘normal’, that he could socialise and communicate better with his peers, and that it took away all the anger inside him.) Once again, however, due to changes in psychiatrists, our son’s appointments became few and far between and he stopped receiving his medication.

When our son was almost 17 he decided to leave home, which was a concern as we wondered how long he would survive. We registered him for social housing with the council but in the meantime we paid a deposit to a private landlord for a room in shared accommodation and made an application for appropriate housing and council tax benefits. He now considered himself a responsible adult so we let him do things his way, but this was short lived when he found himself without money or food, his flat was raided and while he lay drunk in his bed his belongings were stolen by individuals he thought were his friends. After contacting the local council regarding our son’s social housing needs and writing numerous letters, we involved the Shelter organisation. We continued to fight for his accommodation as well as the appropriate state benefits, thinking that if these were in place it would assist us as well as our son to live within the community as an adult.

Within 4 months our son received a one bedroom housing association flat. To this day, 8 years on, we have managed to keep this roof over our son’s head (as well as keeping him out of prison) by being guarantors for his rent, making applications and becoming appointees for this state benefits, making use of other services for grants, such as the Soldiers, Sailors, Airmen and Families Association (SSAFA) Forces help, decorating and furnishing the flat, undertaking regular cleaning, shopping and laundry, replacing furniture damaged or destroyed during outbursts of anger, and intervening with the housing association when they threatened eviction. We bailed him out of debt for credit cards and mobile phone bills, made sure he was ‘red flagged’ on the police system as requiring an appropriate adult in attendance when in custody (which we were at all hours of day and night), communicated with and educated the solicitors acting for our son on ADHD, wrote to the courts in order to put our son’s case across, acted as expert witnesses when our son when to court and advised the solicitor to seek an appropriate expert witness with knowledge of ADHD. When our son attempted suicide while detained in custody we referred the case to the Police Complaints Commission.

By the age of 22, our son underwent a private psychiatric assessment ordered by the courts; it was this assessment that initiated further assessments through the CMHT and at the Maudsley, and how we learned that our son not only had severe ADHD but also Asperger’s syndrome as well as other mental health and learning needs. Later, at yet another court hearing, further medical evidence was needed, which required an expert in ADHD and Asperger’s. The expert provided the much needed evidence that prison would have a severely detrimental effect on our son and on his safety.

This made us wonder how services and agencies could have misunderstood our son for over 20 years. It took the assessment and report of the expert witness involved in our son’s case, and ourselves as parents and carers, to highlight the areas of concern in relation to our son’s diagnosis and the impact the disorder has on his day-to-day life. It is crucial that professionals with great knowledge and understanding of ADHD are instructed by the legal bodies representing people like our son in order to provide the necessary evidence with which to demonstrate that a prison sentence would have serious outcomes.

Our son is now 25 and we still provide the support he needs. We have stood by him no matter what has been thrown at us throughout the years and to this day we believe that our parenting was our road to success in managing and dealing with our son, rather than his being another statistic within our penal system. He is now on a medication known as Strattera and is doing remarkably well. For the first time he has remained in a relationship for over a year, he has become engaged and is slowly dealing with matters relating to his own finances and household management.

It has certainly not been an easy task to access the appropriate healthcare, and social and educational services for our son; it has felt as though we have lived through a nightmare, and in a way we are still going through the tail end of one as we continue to support and care for our son. It angers and frustrates us that professionals see parents like us, who have gained the knowledge and experience of living with and managing ADHD within our family unit, as a threat. They should be working with us and using our knowledge in order to provide the best possible care and support package for their patients.

It would seem that there has been very little improvement in services for people with ADHD and their families in recent years. As parents and carers we have never been offered or directed to any support services relating to ADHD by health or social care professionals; we have managed to access advice and support through family members and the internet. Our experiences as a family have helped us to support other families facing similar situations. I am the chair of a local ADHD support group, which was set up in 1994. The group has received an award for community endeavour as well as local community volunteer awards. We are represented on various local working groups and boards and are also involved in local prisons and young offender institutions. The group has assisted other service providers and authorities set up parent support for ADHD as well as presenting at many conferences on the subject.