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Fourth International Annual ADDISS Conference
ADHD Across the Lifespan Proceedings
1.0. Overview of the NICE Guidelines
2.0. Findings of the 14-month randomised MTA Trial
3.0. The Effective Care and Treatment of Children with ADHD
4.0. The Overlaps of ADHD, DAMP and Asperger's Syndrome
5.0. The Critical Role Of Social Skills Development
6.0. Current Understandings of ADHD Across the Lifespan
7.0. What Comorbidity in ADHD Means for Assessment and Treatment
8.0. ADHD and Juvenile Justice
9.0. ADHD Management - Is NICE Nice Enough?
1.0. Overview of the NICE (National Institute for Clinical Excellence) Guidelines
Eric Taylor (Professor of Child and Adolescent Psychiatry, Institute of Psychiatry, London, UK)
1.1. This is the first time NICE has looked at a mental health issue. This systematic review achieves crucial goals for UK practice and makes important steps in promoting public recognition and acknowledgment of ADHD. It establishes the treatment, makes practical suggestions, avoids detailed protocols, collates evidence, proposes research and dispels myths. It has probably started a new chapter in the development of ADHD services.
1.2. NICE asks two main questions: do treatments work and are they cost-effective? The recommendations are not mandatory but are highly influential.
1.3. NICE establishes and legitimises the treatment. Methylphenidate is recommended at an estimated cost of about £6,500 per quality adjusted life year - much more cost-effective than many established treatments in physical medicine.
1.4. Diagnosis rates have risen from one in 2,000 in 1980 to one in 200 in 1999 but are still 'poor beer' compared with other countries. Mental illness in children is seriously under-recognised; the commonest problems are associated with hyperactivity, estimated to affect 1.5%. But recognition is increasing. The problem itself, however, is not: ADHD has affected 5-6% since the late 1970s. So it is not to do with the breakdown of family life, too much TV, etcetera.
1.5. Indication is for severe ADHD. That is more helpful than confining it to hyperkinetic disorder - NICE accepts that some children are disabled even if they do not meet all the strict criteria of the hyperkinetic category.
1.6. Treatment should be given within the NHS. Methylphenidate licensing (that is, marketing authorisation as distinct from doctors' freedom to prescribe) is not for children under six or for comorbid states.
1.7. Specialist assessment must be part of comprehensive treatment (which recognises that medication is not the sole approach to ADHD), together with careful monitoring and dose control (important defences against casual or over-prescribing). Only after that should treatment be shared between GP and specialist - at this stage, NICE discourages the notion that the GP should initiate treatment but that may be reviewed.
1.8. How long to treat? - as long as it takes. Young adult treatment is increasingly an issue (see 9.6).
1.9. NICE took conclusions of MTA trial (see section 2) very seriously - medication is more powerful than behavioural therapy; there are many advantages in adding it to behavioural therapy but not vice-versa.
1.10. There is a case against the genuineness of ADHD as a disease entity and there is legitimate as well as cranky public concern. But we can argue it down with reason and evidence - ADHD has been shown to have extraordinarily high (95%) heritability, it is the first complex mental health disorder to have known genes. Bain imaging studies promise definite answers about under-developed parts of the brain.
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2.0. Findings of the 14-month randomised MTA (Multimodal Treatment of ADHD) Trial: Clinical Applications and Future Research
(See: www.nimh.nih.gov/events/mtaqa.cfm)
Peter Jensen (Professor of Child Psychiatry, Columbia University College of Physicians and Surgeons, New York, US)
[The MTA was a randomised 14-month clinical trial that compared the relative effectiveness of different treatments in 579 children aged 7-9.9 years who fulfilled DSM-IV ADHD criteria.]
2.1. The trial derived credibility from being conducted at several (6) sites and by involving specialists in both medication and behavioural therapies without giving either any undue advantage.
2.2. The trial was designed to address which treatment (medication, behavioural or both) worked best in the long term and if intensive treatment, also in the long term, gave a better 'bang for the buck' than standard treatment in the community.
2.3. Children were assigned to three state-of-the-art treatment strategies - intensive medical management (methylphenidate or other agents if methylphenidate failed), intensive behavioural therapy and the two combined, plus a control group receiving community-based treatments. All are being followed up for 10 years. All approaches worked - the question was, which worked best; the goal was 'normalisation with no room for improvement'.
2.4. Patient samples were highly heterogeneous. Averages were: 20% female, 39% ethnic minorities, 19% from families on welfare, 31% from single parent households, 31% having received prior CNS-stimulant treatment, substantial comorbidity (only 31% had ADHD alone).
2.5. The most important finding at 14 months was that despite variations between sites and the degree of children's illness, findings were the same. Medical management and combined treatments were much the same and substantially better than behavioural and community treatments.
2.6. Longer-term findings confirmed that ADHD children have worse outcomes if not effectively treated. Combined medical/behavioural approach produced best results in all outcome areas. Behavioural therapy was better than community comparison only in terms of parent-child relations.
2.7. Community treatments did not work so well when children received less medication or were seen less often or for shorter periods.
2.8. At 24-months (after 10 months back in the community), children who had received intensive medication management alone or in combination with behavioural therapy were still significantly better than those receiving behavioural therapy or community treatment.
2.9. Behavioural therapies have not been driven by neuroscientific understanding; once the neurocircuitry has been tracked, mediation programmes will improve.
2.10. A participant commented that teachers will often not co-operate with management of ADHD children. Prof. Jensen said that in the MTA study, teachers responded when they and schools were 'coaxed' with cash and educational aids.
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3.0. Building Up Rather than Tearing Down: The Effective Care and Treatment of Children with ADHD
Sam Goldstein (Professor, University of Utah, Salt Lake City, US).
3.1. ADHD is a condition we thought was benign but it significantly increases mortality and morbidity. We thought it was a condition set apart and insulated from others but in fact it is catalytic; it occurs before most other conditions develop and seems to have a risk-inducing role, increasing the likelihood of depression and anxiety and comorbidity. ADHD dramatically increases vulnerability.
3.2. So, can we nip it in the bud even if we cannot stop it? We need a theory that makes sense of the behaviour of children with ADHD. We can consider ADHD as a disease or disorder which is an exaggeration of normal behaviour with up to 70% of adults suffering from at some time or other.
3.3. Physicians must have a filter that distinguishes the 18 listed symptoms of ADHD from the nearly infinite number of its consequences.
3.4. We have to empathise with people who behave impulsively because they lack self-regulation (self control), so vital in daily life - the ability to inhibit, to delay, to separate thought from feeling, to change perspective, to consider alternative responses - people who are locked into their first response, who cannot change their minds. Children with ADHD lack inbuilt guidelines - they are not clueless but they are often cue-less.
3.5. A child given a task which does not hold immediate interest or for which the pay-off is inadequate has no strategy to do that task. Do not ask ADHD children 'what were you thinking when you did that?' (the answer is invariably and truthfully 'I don't know') - ask them 'what weren't you thinking when you did that?'. Their limited capacity for self-control is quickly overwhelmed. For them, knowing what to do is not the equivalent of doing what they know. What we do with ADHD is not necessarily designed to build skills but to improve their ability to consistently and predictably regulate and manage themselves.
3.6. ADHD children do not have a problem with doing an activity as such but with the nature of the conditions surrounding it. For example, they know how to get dressed and will readily do it on Saturday but not on a school day.
3.7. ADHD fuels developmental and environmental risk factors, creating adversity in the environment, leading to comorbidities. To help these children, we have to see that symptom relief is not synonymous with better outcome. By managing environmental consequences, creating tasks that interest them, we can significantly help children with ADHD. Keys to successful management of ADHD symptoms - make tasks interesting, make payoffs valuable, accept that some children take longer to learn, allow more trials to mastery, allow more time for change. "These children are innocent. We create a world they struggle to fit into. We are upset if they can't fit".
3.8. Components of standard treatment plan. 1. Education (learn not to have unrealistic expectations). 2. Thorough assessment (ADHD creates many kinds of mental and physical vulnerabilities). 3. Medication (clearly makes a positive difference but compliance declines over time). 4. Behaviour management (brings change, particularly in the short run). 5. Educational support. 6. Having a long-term perspective. 7. Build success. 8. Focus on resilience (ability to function competently under stress and recover from trauma under adversity).
3.9. The most powerful predictors of a resilient child. 1. Easy temperament (children who can negotiate their lives without disturbing adults do better under adversity). 2. Consistent family relationships (the stronger an adolescent's belief that parents are available, the better they do). 3. Competent caregivers. 4. Development of self esteem (being good at something). 5. A sense of emotional security. "None of you should ever under-estimate the power you have to shape the life of a child".
3.10. Websites: www.samgoldstein.com and www.raisingresilientkids. com
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4.0. The Overlaps of ADHD, DAMP and Asperger's Syndrome
Christopher Gillberg (Professor in Child and Adolescent Psychiatry, University of Göteborg, Sweden).
4.1. Prof. Gillberg detailed criteria for diagnoses of ADHD on the basis of DSM-IV and ISD-10. DAMP (Deficits in Attention, Motor control and Perception): a Scandinavian concept which is the combination of ADHD plus DCD (Developmental Co-ordination Disorder, present in 50% of ADHD cases). DCD is age and IQ inappropriate motor clumsiness and lack of coordination which interferes with daily life. With ADHD plus DCD (inattentive, hyperactive and clumsy in combination), there is also a high risk of having Asperger's symptoms (this and associations with autism described in detail).
4.2. There is a tendency to focus on the behavioural, psychiatric and emotional comorbidities. and to overlook the developmental and learning problems associated with these conditions.
4.3. Children diagnosed at age 7 as having ADHD plus DCD are at very high risk of poor social outcome: in Sweden, 20% qualify for full pension at age 22 years, or are involved in severe criminality, have severe substance use disorders or major psychiatric disorder requiring treatment in 58% of cases (vs. 13% in those without DAMP) and very low education levels not accounted for by lower IQ or social disadvantage.
4.4. Such people NOT treated with CNS-stimulants often become drug abusers.
4.5. Other related DSM-IV disorders - Pervasive Developmental Disorder (widely used in US, not Europe), Multiple Complex Developmental Disorder (related to DAMP), Tourette's syndrome and other conditions comorbid with ADHD, dyslexia and hyperlexia (common in DAMP and Asperger's), depressive and anxiety disorders are often comorbid with ADHD and DAMP and sometimes with Asperger's, semantic pragmatic disorders (often a diagnosis made by speech pathologists), mathematics disorders, non-verbal learning disability (problems with practical skills), and other specific developmental disorders.
4.6. All those with ADHD, DAMP and Asperger syndrome tend to have either attention deficits or hyperactivity or impulsivity problems. All those with DAMP or Asperger's meet criteria for DCD or are sub-threshold DCD cases (motor clumsiness). Most children with ADHD, DAMP and Asperger's have empathy problems (problems about seeing other people's point of view) or have major social interaction problems. Comorbidity with tics and with depression anxiety seem very marked in all three conditions. There is a suggestion in these data that there are shared symptomatic areas which are not to do with the diagnostic criteria. All those with these three disorders have executive function deficits that remain stable over time. Fronto-striatal and brain stem-cerebellar dysfunction have been suggested to underlie all three conditions. CD is less in DAMP than in ADHD without DCD but the rate is still much increased in that sub-group. ODD) and/or CD affect about 60% of pre-school children with ADHD. The rate of ODD/CD in Asperger's is unknown but clinical reports suggest a degree of overlap. Co-occurrence of these three disorders with eating disorders may be over-represented. Substance abuse disorder rates are high in all three conditions.
4.7. DAMP has a worse outcome than ADHD, with more social problems and learning difficulties.
4.8. ADHD without comorbidity probably has a good outcome in terms of major psychiatric disorder (e.g. criminality) in adult life. The evidence is growing that if ADHD is without major comorbidity, the prognosis, at least psycho-socially, can be rather good.
4.9. Asperger's probably has a worse outcome than DAMP or ADHD. Asperger's sufferers with very high IQs can do well in adult life. High IQ can compensate for many of the problems in all three disorders.
4.10. Learning problems are very common in ADHD and - it is important to note - in sub-threshold ADHD.
4.11. Two-thirds of children with ADHD in the general population have at least two comorbid disorders.
4.12. Autistic disorder cannot be clearly separated from Asperger syndrome. Most of those with Asperger's have either ADHD or DCD or sub-threshold variants of these disorders. One needs to look for these types of comorbidities in the autism spectrum as well as in other disorders and in other children worked. ADHD with DCD is a strong predictor of Asperger's symptoms and a child with these symptoms may also be on the autism spectrum. ADHD, DAMP and Asperger's all substantially increase the risk of affective and excited disorders, disturbed eating behaviour is common in all three, substance disorder is over-represented in ADHD and DAMP and possibly in Asperger's (where the data are limited so far).
4.13. Are DAMP, Asperger's and autistic disorder on the same spectrum? Are they comorbid with tic disorders? Are we dealing with a mix of dopaminergic, serotonergic and noradrenergic dysfunction or other transmitter syndromes which are linked by neurochemical necessity? Father knowledge of the genetics and the neurochemical aspects of these disorders may explain the reasons for the comorbidities which we now realise are enormous rather than explained merely as one thing leading to another. People often tend to assume that if you have ADHD, for instance, all the other problems arise as a consequence; some do but there may also be shared problems because of underlying neurochemical dysfunction.
4.14. With ADHD, there is a 50% likelihood of DCD. It is also likely that 7-10% will also meet criteria for Asperger's. 10-15% will meet criteria for Tourette's syndrome and many more will meet criteria for tics. If you need criteria for ADHD and DCD, you are likely to need criteria for Asperger's. So if you have DAMP you are also likely to have an autism spectrum disorder. And if you have Asperger's you are likely to have Tourette's syndrome. We need to be aware of these links in clinical practice so that if anyone comes across a child with ADHD one should think about all the other possibilities.
4.15. You must always be aware that these syndrome labels simply reflect the surface - many other problems interact and need to be looked for. It is seldom that anyone has 'pure' ADHD or any other of these conditions purely.
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5.0. Space, Face, Voice And Choice: The Critical Role Of Social Skills Development In Addressing The Needs Of Students with Attentional and/or Learning Problems
Loretta Giorcelli (Professor, educational consultant)
5.1. Social skills are usually the product of family or cultural modelling and differ subtly from culture to culture.
5.2. They are defined by the ability to project consequence (to put space or mediation between the impulse to do and say something and the actual doing or saying of it) and to project into the feelings of others (to read the verbal and non-verbal messages which say what is acceptable or not). This is usually shaped by peer reactions. In some children, social skills need to be developed.
5.3. The four most critical areas where rules are constantly broken. 1. Personal space and touching behaviours. 2. Face (the rules which govern what is communicated by facial expression and body language). 3. Voice (the pragmatics of language - phatics, sarcasm, irony, innuendo, teasing). 4. Choice (personal presentation, hygiene, breath, body, posture). These form the basis of my 'BRAG' programme (Balance, Resilience, Autonomy, Growth): this contributes to developing a balanced view of the world and the ability to bungee-jump through life.
5.4. There is a hidden curriculum which militates against the development of social skills not naturally developed in some children - all the subtle unspoken, unwritten rules about school, home and other environments, the family laws that govern acceptance, the things that make a child valued and popular, the peer group rules that govern acceptance.
5.5. Social skills continually develop and if you do not have them they appear to be continually breaking down because they are so frequently tested. That is why children fail or have an habituated anti-social response. Social skill development thus often involves unpicking behaviours that have become habituated and outlining domains that make behaviours acceptable or unacceptable.
5.6. Modelling alone is ineffective. Otherwise, children from families with exquisite social skills would not lack them. But there is no need, because of that, to stop modelling expected courtesies - the child who said 'tell me again why you are relevant' should not be given back an easy but unacceptable sarcastic comment and the question needed to be answered in the genuine spirit in which it was asked.
5.7. Any analysis with a child of the breakdown in their social skills must be individual, should be private and should be supportive; it should not be negatively attributed to the child ('you've let me down', 'you're a disappointment', &c); it is the act or the incident we are discussing, the impact on the other person or on the consequential event.
5.8. Training can be in situ where it occurs, or structured/programmed, carried out by adults comfortable with social skills and who enjoys it. A non-judgmental approach is vital. A social skill group should involve all significant adults in feed-in and feedback.
5.9. Social skill development is supported by group discussion in groups of 4-6. It can be aided by looking at film clips of TV 'soaps' without sound - this can graphically illustrate inappropriate behaviours. Coaching and role playing of acceptable behaviours can re-programme social skills. Support must then be weaned off, because we cannot always be there.
5.10. Checklist of what helps. 1. Modelling with direction. 2. Coaching/rehearsals. 3. Scaffolding unobtrusively (hints, advice, suggestions). 4. Use films, TV or book characters. 5. In-class and family defusions. 6. Employ realistic scenarios to discuss critical social skill issues. 7. Create or use social skill development options at school or in the community. 8. Support social skills development in class via random or interest grouping of children rather than allowing them to group themselves through friendships (as this will group together children with social skill problems). 9. Look for non-competitive playground alternatives (e.g. fishing): "if you are a heavily football or physically orientated school and you have kids who are clumsy, uncoordinated, socially unskilled, they need an oasis at lunchtime; otherwise, it is putting them into the worst possible situation for putdown and destruction of self-esteem, every day of the week".
5.11 Useful strategies. 1. Deal with the hurt and anger that comes from being put down. 2. Keep perspective - get children to measure out what matters. 3. Learn from others. 4. Learn by role playing. 5. Learn self-monitoring. 6. Nurture self-esteem.
5.12. Personalisation. Our role as charismatic adults is to create status in children by accepting them personally and relating to them things we share. Recognise that young people need self-nurturing individuals with strong sense of self, vision and personal conviction - we should not project our own needs. Avoid being an expert worrier who needlessly turns every pleasure into a misery. Do not discuss young people's social development openly. Acknowledge and celebrate social successes with children and teens.
5.13. Websites: www.doctorg.org (in development); www.addept.org
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6.0. Current Understandings of ADHD Across the Lifespan: Inattention and Executive Function Impairments
Thomas E. Brown (Assistant Clinical Professor of Psychiatry, Yale University School of Medicine, US).
6.1. ADHD is now increasingly seen as the developmental impairment of executive function.
6.2. DSM-IV still focuses on the combined type of ADHD, which has a predominating cluster of inattention systems with or without hyperactivity, of which the core is impaired ability to inhibit. However, ADHD involves a complicated range of difficulties that are much more than inability to put on the brakes.
6.3. In half of the 6-8% of impaired children, their impairments persist into adulthood, yet most guidelines focus only on children. Very often, inattentive symptoms in children with the combined type of ADHD worsen with age even though they tend to lose the hyperactive symptoms.
6.4. More females are affected than previously thought but they are not recognised - close to equal numbers of males and females in adulthood.
6.5. Being intelligent is no protection.
6.6. ADHD clearly runs in families.
6.7. ADHD problems are problems that all of us have at times but ADHD people have a lot more and these problems are persistent and pervasive.
6.8. There is a situational variability of symptoms. "I have never seen a patient with ADHD who has not had some specific domains of activity in which they are able to exercise perfectly well virtually all of the functions that are impaired in ADHD". People who do not have ADHD can make themselves pay attention when necessary whereas ADHD sufferers have "an impotence of the mind" when a task does not turn them on, try as they might. People with ADHD can pay full attention when they are interested but it is not a matter of will power.
6.9. Brown's 'Model of Executive Functions Impaired in ADHD'. 1. Activation (trouble getting started on work, in organising tasks, prioritising, needing pressure to do something). 2. Focus (losing focus when trying to listen, when reading; easily distracted). 3. Effort (not sustaining alertness, quickly losing interest in a task or completing it on time, inconsistency in work output). 4. Emotion (managing frustration, modulating emotions, too fussy, easily hurt). 5. Memory (forgetting to do planned tasks, difficulty recalling learned material, losing track of belongings). 6. Action (regulating action and self-monitoring it, difficulty in sitting still or being quiet, not being careful, often interrupting).
6.10. The executive functions impaired in ADHD are a wide range of central control processes that connect, prioritise and integrate other functions, especially problems of working memory, which increase with age.
6.11. There is no empirical data to support the DSM-IV criterion for onset of ADHD that at least some symptoms must be present before age 7.
6.12. The ability to exercise executive function increases with age but so do the demands for one to exercise it. This blows the age of onset notion out of the water.
6.13. People with lack of executive function are like a cook with a superb kitchen and all the right ingredients who is unable to get the meal together and on the table. "They are always a day late and a dollar short".
6.14. I am proposing (not all would agree) that ADHD is the name for the developmental impairment of the executive functions of the brain. The environmental demands of executive function increase with age; often, the cognitive impairments of executive function are not apparent until challenged by the increasing demands of adolescence, when people must take on much more responsibility for managing themselves
6.15. Many brain systems are involved but most of the cognitive functions impaired in ADHD are advanced by brain networks that operate on dopamine. The brains of ADHD people make dopamine in the same way as everyone else but do not release and reload it effectively. The most successful medicines for treating cognitive impairments in ADHD help that release and reloading.
6.16. ADHD is a label for a heterogeneous cluster of developmental and inheritable dysfunctions associated with several nodes along the intentional/attentional network related to executive function. There is no one space in the brain that controls executive function.
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7.0. What Comorbidity in ADHD Means for Assessment and Treatment
Peter Hill (Professor, Child and Adolescent Psychiatrist, Great Ormond Street Hospital for Children, London, UK).
7.1. In the complex of cognitive and behavioural problems which comprises ADHD, there are often or usually some other medical/psychological problems.
7.2. Comorbid developmental conditions to which ADHD people have an inherited vulnerability include dyslexia, dyspraxia, dysgraphia, dyscalculia, Tourette's syndrome and autistic spectrum disorders. Children with ADHD plus dyslexia and dyscalculia are likely to be labelled by teachers as 'lazy'.
7.3. Comorbid anti-social conditions include the most serious and significant of the ADHD comorbidities, antisocial behaviour generally (e.g. tantrums, aggressivity, impulsivity), ODD, CD, disproportionate outbursts of rage, serious violation of the rights of others.
7.4. Comorbid mood disorders typically come on in adolescence or adulthood. Anxiety (in 15% of childhood ADHD), depression (more far more common in ADHD childhood than would be expected), extremely disordered mood, substance misuse (especially nicotine) and associated problems such as sleep disturbance, family and peer relationship difficulties, educational under-achievement (almost always), sense of failure, low self-esteem (perhaps not as common as traditionally thought).
7.5. The way in which society is developing means that self-esteem will become increasingly necessary for people to survive and succeed. "Although it has often been said that because they are passive victims of pharmaceutical onslaught, children do not feel there is any improvement and feeling useless is blamed on the medication, in fact, children who are successfully medicated have higher self-esteem."
7.6. Assessment: you must have multiple sources of information (parents, school, child) and probably, given that there is a wide range of comorbid conditions, the best way to ensure that is to have a checklist of specific questions. But that takes a lot of time, which might mean missed school, which must be weighed against educational under-achievement. Time costs must be balanced against opportunity costs - it
7.7. The response of the ADHD pattern to (say) methylphenidate is enormously variable and can produce complications. CNS-stimulants can make tics worse as well as better.
7.8. The medical management of comorbid antisocial behaviour is not very good but psychological treatment is.
7.9. With comorbid mood disorders, CNS-stimulant treatment plus an SSRI is a safe combination and many adults speak well of this. Bupropion is useful with ADHD and comorbid depression. With comorbid substance misuse, bupropion can make the occasional young smoker stop smoking. Nicotine patches may be useful.
7.10. With family disruptions, a whole family interview can illuminate conflictual episodes and enable reductions of hostile comments. Peer relationships need on-the-spot supervision.
7.11. With comorbid education problems, disseminating information into schools remains a difficulty - ongoing liaison is better than a single package of information. Whoever is managing educational under-achievement needs to consider which issues (such as distractibility, auditory memory, task completion or reading failure) are the problem.
7.12. Managing self-esteem hinges on monitoring hostile comments, teaching children to listen to comments, appraise those comments and then think about themselves positively. Covert positive comments can be valuable in getting the child into a better frame of understanding what is said.
7.13. A key problem is that clinicians do not see the problems all the way through. They are good at the front end of managing things but not at the tail end. Task completion is a pathological problem in ADHD but it is also important to identify it in ourselves.
7.14. Carnetine (though very expensive) may be useful in treating ADHD plus ME.
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8.0. ADHD and Juvenile Justice
8.1. Dr. Geoff Kewley (consultant paediatrician).
8.1.1. ADHD often creates a vulnerability to conduct disorder and substance abuse. There is thus a link with criminality. There are, therefore, questions regarding conventional attitudes to violence and other criminality.
8.1.2. It is crucial for the mental health professions to link with the juvenile justice professions. Juvenile delinquents have high rates of psychiatric comorbidity, which need intervention.
8.1.3. If ADHD is untreated early, then by age 10 there will be disruptive behaviour, poor social skills and learning delay, followed by challenging behaviour and ODD in adolescence which can move on to criminal behaviour, school exclusion, substance abuse, teenage pregnancy, conduct disorder, lack of motivation and complex learning difficulties." It is a progressive condition which, if untreated, considerably increases the chance of ending up in gaol".
8.1.4. The link between ADHD and criminal activity (though only a minority of children with ADHD) is chiefly associated with conduct disorder, especially early onset. This raises the vexed issue of the extent to which ADHD is biological, psychosocial or psychiatric.
8.1.5. The consensus of literature and clinical practice is that whenever antisocial or aggressive behaviour arises, especially in a very young child, the possibility of CD masking or overshadowing the underlying ADHD should be considered. Therefore, acknowledging a potentially treatable biological component of CD significantly challenges long-term societal views, and especially judicial views.
8.2. A case history. (Mrs. Pat Greenway, mother of Maxwell, who has ADHD).
8.2.1. Mrs. Greenaway spoke of how difficult it had been to get Max (now 28 years old) diagnosed and her struggles in getting the authorities to recognise his problems. She emphasised the importance of early diagnosis and treatment because, left untreated, ADHD leads to immense difficulty and irreparable heartache.
8.2.2. No problems in pregnancy or birth or until age 18 months when it became clear Max was hyperactive, needing little sleep or food. Otherwise, he was happy and healthy.
8.2.3. After he learned to talk, he would repeat everything under his breath several times. He had no fear, would do the most dangerous things, and needed to be watched constantly.
8.2.4. At primary school, he was real trouble. His father became a governor to mediate between Max and the staff. Teachers refused to take responsibility for him on school trips.
8.2.5. In secondary education, he could not cope. He was expelled from or asked to leave two main schools and three remedial schools in two years. At 14, he walked out of school and never returned. He was never violent or spiteful, just disruptive, although highly intelligent.
8.2.6. He was always compared to his brother who was a high achiever and loved school. We had endless meetings at the school and with two educational psychologists. I tried to convince the teachers to give him things he could manage and was good at (he was a talented artist) but they were not prepared to make exceptions - at that time, ADHD was not understood and it was easier for the teachers just to exclude him from classes.
8.2.7. If he was told not to do something, he would listen carefully and then do it to find out why he was not supposed to. That led him to drugs and the need to commit crimes. He quickly became known to police. He put graffiti in places where no-one else could get to.
8.2.8. After that, shoplifting and office burglary. In the early days, he would steal things he didn't even want and would throw away. Since age 17, he has had more than 100 convictions and has been in and out of youth offender institutions and prisons.
8.2.9. We tried everything - psychiatrists, social workers, probation officers. None came near to seeing what the real problem was.
8.2.10. When he went before courts, I never asked for him not to be punished, but because we always stood by him, the authorities saw us as 'too supportive' or 'indulgent'. We were once threatened with contempt of court because we insisted on addressing the judge.
8.2.11. Since 17, and Max being Max, his involvement with drugs has been in spades. It became a real nightmare. It was hell for the whole family. The other two children suffered terribly. I think I am very lucky that they are still loving and supportive of us because there must have been so many times when they felt excluded due to so much time and energy being devoted to Max. They have both gone on to be happy and successful.
8.2.12. One night, I saw a Channel 4 programme about a boy of Max's age with ADHD. It was like solving a huge complex puzzle. I realised that Max had every description described, plus several of his own. I rang the helpline and as a result, at the age of 26, Max was diagnosed.
8.2.13. I found a psychologist experienced in ADHD who agreed to see Max in Wormwood Scrubs. But my GP refused to give a referral, saying Max's course in life was now set. Eventually, after three appearances in Crown Court and after we agreed to pay privately for the consultation, we got permission.
8.2.14. We found that Max had not only ADHD but also Asperger's and (?). We took a full report back to court where it was insinuated that because we had paid money, we were told what we wanted to hear. But I now had proof of what I had long suspected, that there was something deeply wrong with Max. I wrote to anyone I thought could make a difference to make them aware of the problems my boy and doubtless many other prisoners have.
8.2.15. My GP now agreed to refer Max to the Maudsley Hospital but by the time the appointment came round he had started another prison sentence. Yet, if prison was the answer, surely he would have been cured by now.
8.2.16. Last time round, he was sent to Brixton prison where, by a miracle, one of the healthcare team was familiar with ADHD and understood Max. You have no idea what it meant to know that our son was no longer being ignored. He got his medication and the officer continued to work with Max until he came home.
8.2.17. But the same help was not available outside prison. Less than three weeks after being released, he was arrested yet again and is now back in prison awaiting sentence for doing exactly what he did before. He will miss his sister's wedding and the birth of our first grandchild, just as he has missed every family occasion for the past 11 years.
8.2.18. The compulsion for drugs and the need to fund them is too strong to resist without the help he so desperately needs. Each time he leaves prison, he is less able to cope with life on the outside and becomes more dependent on the secure boundary that prison gives him.
8.2.19. The saddest thing about Max is that although he is talented, he is unable to learn from his mistakes. He knows the consequences but cannot put the brakes on. Had he been treated earlier, life would have been so different for us. I do not condone anything Max has done but I am no longer embarrassed or ashamed of him, because he is just as disabled as someone with Down's syndrome or physical disability. Yet he gets no sympathy or understanding and is considered a nuisance to society.
8.2.20. Without the correct treatment, there was nothing we could have done. I asked him hundreds of times "why, Max?" and always his answer was "I don't know, Mum". I hope my candour today can help other parents avoid what we have gone through. I believe with all my heart that if Max had been treated properly, he would not now be in a prison cell. It is vitally important that everyone working with young people - teachers, doctors, parents and most of all young offenders' institutions - must be educated about ADHD.
8.2.21. I have met other mothers in the same situation. One of the biggest obstacles is that rehabilitation units will not take children who need methylphenidate. Catch 22: the young people cannot manage without medication but if they take it cannot get the help they need.
8.2.22. In 11 years, Max has had 26 custodial sentences without getting any help to stop offending. He is not violent to anyone. He has not come from a broken home or anything like that. He is 28 and he has not had a life. His outlook is dire.
8.2.23. It is clearly vital that ADHD children are diagnosed as early as possible. Parents should shout and scream until their children get the help they need.
8.3. Comments and discussion.
8.3.1. A paediatrician said that the onus was on the medical profession to regard ADHD as a life-threatening disease.
8.3.2. Mrs. Greenaway said many 'experts' did not have a clue. She thought it was partly a matter of finances - a fear that too many people would seek treatment and that this would open the floodgates. But prison was costlier and the proper medication was seldom given there.
8.3.3. Another parent said the authorities often had to be told what was needed. It was a ceaseless battle. Professionals must work with parents in lobbying to ensure that a huge mindset was changed. The media (especially tabloids) must be educated to understand ADHD and stop demonising offenders.
8.3.4. Mrs. Greenaway referred to the negativity of schools trying to force Max to do things he could not do instead of helping his self-esteem by enabling to do art, the one thing he was very good at. Even when he was little, one word of encouragement from her was worth a thousand telling-offs.
8.3.5. A participant commented that people with ADHD came from criminal or other 'bad' backgrounds.
8.3.6. A discussant said many parents found it difficult or even impossible to get the necessary help in their healthcare area. "We simply cannot find the professionals we need".
8.4. ADHD, Substance Abuse and Criminal Behaviour
Dr. Nikos Myttas (Consultant Child and Adolescent Psychiatrist, Barnet Healthcare NHS Trust, London)
8.4.1. There is such a thing as a difficult temperament - parents usually know from the age of 2 or 3 if there is something distinctly different (not just the normal 'terrible twos') about a child.
8.4.2. 60% of adolescents experiment with illicit drugs by age 17. ADHD children abuse drugs three years earlier. There is a novelty-seeking gene (found in heroin addicts) and it is postulated that this gives a genetic predisposition to want and seek out a thrill (also obtained from gambling, fast driving, sex &c).
8.4.3. There is an overlap between substance abuse and ADHD. Alcohol is the commonest substance, also cocaine, opiates and poly-drug use, and 2-3 times more adolescents and adults are smokers than non-ADHD people - nicotine increases attention and has other immediate, seemingly beneficial effects.
8.4.4. The transition from experimentation to chemical and psychological dependence on drugs is much quicker in ADHD youngsters.
8.4.5. Taking methylphenidate or dexophetamine for ADHD does NOT, as many imagine, lead to drug dependence. The evidence clearly points the other way - methylphenidate reduces the risk of dependence by 85%.
8.5. Brian - a case history: comments
Dr Geoffrey Kewley
8.5.1. Giftedness is almost a complication of ADHD - gifted children have extra problems.
8.5.2. 70% of children in schools for emotional and behavioural difficulties have ADHD.
8.5.3. Severe rages in ADHD are often a hallmark of bipolar disorder.
8.5.4. One reason why medication has had a bad press is that it can exacerbate problems in children with ADHD/CD. Getting on top of the situation (especially aggression) in the short term can, given careful management, carry a good long-term outcome, with improved social skills and self-esteem.
8.5.5. Proper understanding, aggressive treatment and effective management of ADHD in the round (not just dealing with the core symptoms) breaks the cycle which impels young people towards criminal behaviour and confers much improved quality of life.
8.5.6. There is growing evidence that the ODD and CD symptoms respond to CNS-stimulants and other medications. Prematurely ruling out ADHD might deprive a child of an important component of treatment.
8.5.7. There is growing evidence of a biological component to CD.
8.5.8. Not only core symptoms of ADHD but also of CD and anti-social symptoms like aggression respond well to methylphenidate. It is vital to note that adding a second medication such as clonidine to methylphenidate for core symptoms can double or treble the positive response rate.
8.5.9. A history of substance abuse is only a relative contra-indication to CNS-stimulant treatment. It is hard to sort out the substance abuse until the ADHD symptoms have been treated. Substance abuse in addictive personalities is tricky to treat - there can be a craving for the medication. Substance abuse services, thin on the ground, often see substance abuse from a purely psychosocial perspective and forget that ADHD/CD/bipolar people are 6-8 times more likely to abuse substances.
8.5.10. Medical strategies to combat aggression and mood instability go well beyond methylphenidate. Five years ago, many professionals lacked experience with methylphenidate but now perhaps use it for the wrong indications or are not titrating, fine-tuning it enough. Other medications should be used only by specialists.
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9.0. ADHD Management - Is NICE Nice Enough?
Professors Taylor, Hill and Brown, Dr. Paul Hutchins (Head of Child Development Unit, The Children's Hospital, Westmead, Sydney, Australia), Dr Geoffrey Kewley, Kathy West (ADDISS, parent of sufferer).
9.1. Brown: The NICE document is an important step forward in acknowledging the wider range of impairment associated with ADHD - it goes well beyond the hyperkinetic/conduct disorder combination, persists into adulthood in at least 70% of cases and can be a lifelong impairment. But NICE also says, contradictorily, that methylphenidate is designed to be discontinued during adolescence. I hope that when their document comes up for revision they change limiting the indication to 'severe' ADHD to something like 'clinically significant' ADHD, which would open the way to helping people before they crash and burn.
9.2. West: NICE takes things a lot forward for most people. It goes well beyond the issue of ADHD. We would like to see linked up services involving education etc. as well as mental health services (which are grossly underfunded for children).
9.3. Hutchens: In New South Wales, doctors have the authority to prescribe to children from age 4 to 17. Prescribing figures over 10 years, just collated, tell against the fear, implicit in the NICE document, that unless prescribing is confined to 'severe' ADHD, everyone will be put on CNS-stimulants. Our experience is that usage levels off even with a wider DSM IV spectrum. No floodgates have opened. (America is not over-prescribing either.)
9.4. Kewley: ADHD still needs to be given credibility by the key professional bodies. In the UK, there is considerable under-treatment. Conservatism and the NHS structure will militate against over-prescribing. The use of 'severe' does not relate to the reality of the condition: it sticks too much to the hyperactivity component and doesn't look at impulsiveness and inattention. Nor does it acknowledge that hyperactivity often lessens over time. The way forward is for the professional groups to get together (like the Dutch) and take it further rather than rely on NICE to do it.
9.5. Hill: The NICE guidelines state that methylphenidate is not licensed for children under six. That is so misunderstood that it has been replaced by 'marketing authorisation', which clarifies that the licence is about marketing, not individual professional practice. Most doctors do not understand this.
9.6. Taylor: Adult psychiatry has to recognise that people with these disabilities do not suddenly stop having them when they reach the age of 18. Hutchens: To prevent them losing the doctor and all the other support they have had for 15 years when they leave school, we said our paediatricians could prescribe up to age 24. Otherwise, dealing with 25-year-olds is a nightmare. NICE has waffled on this point.
9.7. Brown: Even in the US, which is widely thought to be over-active in treating ADHD, those working in the field are still doing missionary work among their colleagues. We must educate each generation of clinicians, who lack information and experience. Much can also be done by parent groups and other community groups.
9.8. Participant: The all-in costs of dealing with ADHD are very high. Statutory services tend to put money before clinical need.
9.9. Child psychiatrist: There are other powerful medications, such as atypical anti-psychotics, that we could use. We will soon need more precise clinical guidelines about recommended treatment. Taylor: Yes, but NICE's credibility is that it is very hard-nosed and based on evidence.
9.10. Former head of residential school: What is the medical profession doing to make sure that there is a common understanding of good practice in evaluating the correct doses for youngsters? This is patchy across the nation at present. Hill: An auditable management protocol based on full assessment for comorbidity and titration (presented at the last ADDISS conference) is due for publication soon in the Archives of Diseases in Childhood.
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