Hello Everyone,
It has been a very busy and successful year for our organization and now it is time to review what we have achieved and plan ahead for the upcoming year. Besides giving you a list of some of our planned events for the upcoming school year, which include courses, workshops, support meetings, and our one-day Conference in September, we include some information about ADHD-Europe activities that affect you.
We are also taking this opportunity to give you a summary of the most interesting presentations at the ADDISS Conference in London 2009, with further information about the speakers to enable you to follow-up at source if you so wish.
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ADHD/AS/Dyslexia Family Resources Brussels
During the year, we made the decision to broaden our advocacy efforts to include dyslexia and Asperger's Syndrome (AS), both of which are highly comorbid with AD/HD. Some of our members may well have one child with AD/HD and another with Dyslexia or AS while others might have a child with all three conditions. We realised that we needed to accommodate these parents in a more comprehensive way.
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Specialised ADHD/AS/Dyslexia Coach Training Certificate
At the same time, Dianne Zaccheo MSW FTC has been training 8 new specialised ADHD/AS/Dyslexia coaches for us during the school year, which means that we can now give more specialised help to our members.
Next Course: On October 17 & 18, 2009, the first session of 7 monthly course sessions will commence at Quaker House, 50 Square Ambiorix, 1000 Brussels and a group of teachers and other professionals who already work with children and/or adolescents with learning difficulties will begin acquiring the specialised information they need to become experts in this field. As a result, we know that the situation will continue to improve in the future for children and adolescents with AD/HD, AS, Dyslexia and/or other comorbid conditions whom we are helping in Belgium.
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Positive Parenting Programme
We also were able to offer a Positive Parenting Programme from November 2008 to March 2009, the trainer again being Dianne Zaccheo. This was limited to 8 parents and we are pleased that this has had a life-changing effect on some of these parents.
We will be offering this again from October 2009 to March 2010 and again it will be limited to 8-10 parents, ideally couples. If you want to be part of this next programme, please contact me as soon as possible so that we can register you for it. It will be held this year on Thursday evenings (19:00-21:00) at Quaker House, 50 Square Ambiorix, 1000 Brussels, which is close to Place Schuman.
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European AD/HD Awareness Week Event: September 26th, 2009
We are especially pleased to announce a multilingual one-day Conference, which will be held in St. Anthony's Hall in Kraainem on Saturday, September 26th, 2009. Joining us in sponsoring this event are TDAH Belgique (French AD/HD support), Centrum ZitStil (Flemish AD/HD support) and Adult Anglophone AD/HD Support Belgium (English-speaking AD/HD support for adults). As you will see from the attached Flyer, we will be offering activities for children, a creche and BBQ as well as books, resources and experts in the field of AD/HD, AS and Dyslexia who will present in English, French and Dutch. Translation from English to French, French to English and Dutch to English will be offered also (see attached Flyer for detailed information).
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More 1-2-3 Magic for Adolescents
In October, we plan to have an evening of More 1-2-3 Magic, when we will screen Dr. Phelan's even more successful DVD and hold discussions afterwards led by Susan Purcell, who is being trained as a Parent Practitioner for 1-2-3 Magic by Dr. Phelan this month in London. This event will be held at St. Anthony's Hall in Kraainem, which our members have found to be a very comfortable and central venue with excellent parking and facilities.
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TOE to TOE Literacy Programme
We will also be offering TOE to TOE workshops in November, which is a very well developed literacy programme from the UK that has been designed as a practical guide for both parents and teachers to help them support children who have difficulty learning to read and write. Watch out for our Flyer with more comprehensive details on these workshops.
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Further Events Being Planned
In collaboration with our colleagues in Switzerland, London and elsewhere, we are in talks with Peg Dawson, co-author of the most useful coaching book on the market Executive Skills in Children and Adolescents: A Practical Guide to Assessment and Intervention. We are planning this event for March 2010 and will let you know when all the details have been finalised.
Also in collaboration with European colleagues, we are trying to entice Jonathon Mooney, who, because of his own experiences growing up with AD/HD and Dyslexia and overcoming these difficulties, is noted for his ability to motivate teenagers who identify with him because of his background. His astonishing book, Reading Between the Lines, is in its fifth edition. This will also be an event planned for 2010.
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ADHD-Europe Activities
This has been an exciting year also for ADHD-Europe, not least because we received our decree from the King at the end of March 2009 declaring ADHD-Europe to be a legal international non-profit organization (aisbl) as of that date. This happened just before our AGM and set the scene for a very productive and ambitious programme plan for the upcoming year.
SURVEY RESULTS: During the year, Stephanie Clark (Subcommittee: Research) designed and conducted a survey of our 27 member organizations in 19 countries in Europe about the availability of diagnosis and treatment of AD/HD throughout Europe. We have published the results of this survey and you can order a copy of this booklet now as follows:
Contact: Rita Bollaert:
ritabollaert@adhdeurope.eu to place your order, giving your exact mailing address.
Pay 5 Euro for each booklet you require into our ADHD-Europe bank account: 068-2498297-89; IBAN BB45-0682-4982-9789; BIC: GKCCBEBB. As soon as we receive your payment, the booklet(s) will be sent to your address.
This publication was a big success at the Congress on AD/HD in Vienna at the end of May 2009 when it was snapped up by various organizations and individuals. It would be particularly useful for our members in Belgium who are a more mobile population than many others in Europe, enabling them to keep abreast of the AD/HD resources available across Europe.
Press Release: ADHD-Europe aisbl and Survey Results
On May 20, 2009, Rita Bollaert (Co-ordinator and Treasurer of ADHD-Europe) released a combined Press Release launching ADHD-Euroupe as a legal entity and announcing the results of our Survey as follows:
Press Release
Contact for further details: Rita Bollaert:
ritabollaert@adhdeurope.eu
EUROPEAN MENTAL HEALTH SERVICES FAIL THE AD/HD TEST.
Mental health care professionals, including psychologists and psychiatrists, frequently have little or no specialized training in treating Attention-Deficit/ Hyperactivity Disorder (AD/HD), the most common lifelong mental health problem.
In a newly published survey, Diagnosis &Treatment of AD/HD in Europe: Differences, Problems and Progress, ADHD-Europe examines provision for the treatment and diagnosis of AD/HD in 19 European countries.
Despite some improvements, the survey found provision for AD/HD diagnosis and treatment in crisis. As demand for diagnostic assessment increases, European mental health professionals still receive little or no specialized training in the proper diagnosis and treatment of AD/HD, resulting in insufficient diagnostic services, long waiting times (children can wait for years), inadequate and inappropriate treatment availability for children and less for adults.
A spokeswoman for TDA/H Belgique, Wallonia, Belgium said:
Sometimes it is truly an uphill battle. Some health professionals still know very little about this disorder. Doctors, including psychiatrists and neurologists, look for psychological and/or educational causes.
AD/HD is not caused by poor parenting, changes in the pace of modern society or too much television; it is a neurodevelopmental disorder with core symptoms of inattention and impulsivity, with or without hyperactivity.
The causes are complex, but around 80 % of the risk factor is genetic, with approximately 5-6 % of children and 3-5 % of adults being thought to meet the DSM-IV TR diagnostic criteria. In addition to impairments resulting from these symptoms, sufferers and their families may also be affected by social stigma. Treatment offers children a release from the misery and isolation brought about by their behavioural symptoms, as well as improvements in family life and educational achievement. Untreated AD/HD can lead to pervasive lifetime impairment, but the outlook can be much improved with proper treatment.
ADHD-Europe aisbl is a European non-profit umbrella organization which received full legal recognition in Belgium in April 2009. At present, ADHD-Europe represents 27 National and Regional organizations concerned with AD/HD from 19 countries who have worked together since 2005 for the improvement of the situation of those affected by AD/HD.
The survey will be available on May 21, 2009 from ADHD-Europe aisbl, Avenskouter 13, B-9820 Merelbeke, Belgium.
ADHD-Europe
http://www.adhdeurope.eu/ info@adhdeurope.eu
ACTION NEEDED: You can make a significant contribution to spreading awareness about AD/HD by putting this Press Release on your websites or in your Newsletters, etc. so that as many people as possible can view this document.
ADHD-Europe Sub-Committee: Coaching
At our AGM on April 18th, 2009, we set up a sub-committee for Coaching, which will be chaired by Joanne Norris and include members from The Netherlands, Germany, Poland, Italy and Croatia. Our aim is to develop guidelines for best practices and training across Europe. We will keep you informed about this during the coming year.
ADHD-Europe Declaration about AD/HD
We also decided to develop an official document, Declaration about AD/HD, which will be signed by experts in the field of AD/HD and related conditions across Europe during the coming months. Ideally, we would like to be able to launch this Declaration for our European AD/HD Awareness Week from September 21 to 28, 2009 and we are still on track with this goal.
ADHD-Europe Proposal for Conference at EU Level
We submitted a very ambitious proposal which, if successful, will enable us to target policymakers from the European Commission, governmental officials from our member countries and officials from the Ministries of Health and Education across Europe as well as officials from NGOs working in related fields..
It is our aim to lobby for better education for doctors and other healthcare providers, more comprehensive psycho-education for teachers, tutors, Learning Support staff, pre-school and kindergarten teachers as well as psychologists and therapists, better accommodations for children, adolescents and adults who are affected by AD/HD and/or related conditions across Europe and more awareness and tolerance about AD/HD generally in order to reduce the stigma and discrimination that still exists across Europe. This stigma is responsible for large numbers of adolescents reaching adulthood having never been diagnosed or treated for the condition that has robbed them of a suitable education and, in some cases, placed them on the fringe of society because their needs were not satisfactorily met when they first began to exhibit symptoms.
You all know that these measures are needed; what we realise is that the situation is very similar in each of our member countries as regards this condition. We came together to make a difference because we realised that we would have more visability and legitimacy as a European organization to accomplish the above mentioned goals.
We have made a lot of progress in 2008 and thus far in 2009; we are now invited to attend the High Level Conferences and Seminars that are being held by the Directorate General for Consumer Health (DG-SANCO) - and are thus allowed to sit at the top table, which, to a certain extent, involves us in the decision-making process for better mental health policies in Europe. However, our aim for the future is to sit with the decision-makers behind the scenes in drafting these policies, especially as they affect AD/HD and related conditions.
We will keep you informed of our progress in this area.
Summary of Findings from ADDISS Conference in London 2009
The ADDISS Conference was a very important event this year, with top speakers from the US and the UK presenting throughout the 3-day event. The most interesting speakers, many of whom showcased their latest books, were:
Thomas Brown, Ph.D.: Dr. Edward Hallowell, Peter Jensen, MD, Gina Pera, Prof. Peter Hill and Dr. Keyley
Throughout the conference, there was a big emphasis on understanding AD/HD in the context of the co-existing conditions that are highly comorbid with it, such as AS, Dyslexia, Bi-Polar Disorder, etc. Evidence-based information about the prevalence of comorbidities was presented by a number of speakers.
Overlap Between ADHD and Other Disorders: A New View of Comorbidity
(Thomas E. Brown Ph.D.)
Children and adults with AD/HD have a greatly increased likelihood of having one or more additional learning or psychiatric disorders at some point in their lives. These may include depression, anxiety, obsessive-compulsive disorder, sleep disorder, substance use disorder, reading disorder, math disorder, disorder of written expression, opoositional-defiant disorder, bipolar disorder, autistic spectrum disorder of others. Dr. Brown presented a new model for understanding why it is that AD/HD is so often complicated by other disorders and how treatments can be adjusted to address these overlapping impairments. His model explains how ADHD-related executive function impairments are an underlying aspect of many other disorders.
Emotions, AD/HD and the Brain
(Thomas E. Brown Ph.D.)
Current diagnostic criteria for AD/HD include no mention of problems with regulation of emotion, yet most children and adults with AD/HD report significant, chronic difficulty in managing one or more of their emotions. Some are too easily irritated and angered; others too often feel overwhelmed by worry, are excessively impatient or are too quick to become discouraged. Some suffer too easily and too long from hurt feelings while others are persistently bored. Often these problems with regulating emotion cause social difficulties for those with AD/HD. Dr. Brown explained how emotions are generated and managed by the brain and described some options for addressing problems of emotional management in children and adults with AD/HD.
For more information about both of these topics, I encourage you to visit Dr. Brown's website where he makes his latest findings available and gives full explanations on these very important topics:
http://www.drthomasebrown.com/.
Tips for Parents: Change Your Perspective on AD/HD
(Edward M. Hallowell, MD)
Dr. Hallowell's message at the conference was a very positive one as he urged parents to reframe their child's symptoms - that are more often than not seen as negative traits - in terms of the accompanying positive mirror trait (hyperactive = energetic/can't stay on point = sees connections others don't/forgetful = gets totally absorbed in what s/he is doing/disorgenized = spontaneous/ stubborn = persistent/ inconsistent = shows flashes of brilliance/moody = sensitive, etc.).
He advised parents to look at treatment as the unwrapping of gifts, not as the rectification of a disorder or the filling in of a deficit. He explained that every treatment plan should include: diagnosis, including identification of talents, strengths, interests and dreams; a Kolbe assessment with subsequent action steps based on the Kolbe strengths profile; implementation of the 5-step plan he calls the "cycle of excellence;" education of the family and the school as to what AD/HD is and is not; changes in lifestyle; structure; counseling of some kind; a condideration of medication; and a consideration of various other therapies.
He especially asked parents to avoid toxic worry, worrying alone about something because worry becomes toxic when you worry alone. Toxic worry is usually based on wrong information or lack of information. He said that parents should surround themselves with people who can laugh because it is important to be able to regain a perspecticve that allows you to see the humour in everything that happens.
For more information about his theories, consult Dr. Hallowell's book: Superparenting for ADD: An Innovative Approach to Raising Your Distracted Child. Edward M. Hallowell, M.D. and Peter S. Jensen, M.D., Ballantine, 2008.
http://www.drhallowell.com/.
Improving Long-term Outcomes for AD/HD: Lessons Learned from the MTA Study
(Peter Jensen, M.D.)
Dr. Jensen gave an overview of the MTA Study, which was based on measured outcomes after 14-month, 24-month, 36-month, 6-years, 8-year and 10-year intervals. The two primary questions answered by the study were a) Medication vs. Behaviour Management and b) State-of-the-art intensive MTA treatments vs. standard care available in the community over the long term. The sample was a large, multi-site with few comorbidity restrictions with treatments in multiple settings, including school.
He concluded that children have better outcomes if a) their parents make healthy attributions about them, b) their parents use effective discipline strategies, c) their mothers have high self-esteem or their fathers have high parenting efficacy and d) they feel accepted by their peers and confident in their social abilities.
MTA Take-Home Messages I: For AD/HD combined type, careful medication management yields better relief of AD/HD and other symptoms than intensive behaviour therapy alone or low-intensity medication throughout 24 months; when intensive medication management is discontinued, the benefits of early intensive medication management are gradually lost by 36 months, on average for all subjects; 25% of children show dramatic deterioration by 36 months after high quality medication management treatment was discontinued; 25% of children show continued improvement on medication throughout 36 months (less intensive is good enough); and low intensity medication treatment vs. no medication treatment makes no difference for advantaged families by 36 months and beyond.
MTA Take-Home Messages II: Incorrect to conclude that medication doesn't work 36 months later of that MTA was a failed trial; cross-over effects after randomization: families doing well stopped medication, families deteriorating started medication; medication dose should be individually determined and empirically and carefully monitored over time; consideration should be given to diabetes and hypertension analogies; excellent treatment only works if is maintained.
Summary: Long-term follow-up reveals for treatment referred sample: sustained improvement in symptoms for some but lack of normalization overall; need to retrain community doctors to "tool-up" to improve quality of medication and support interventions; need more studies of outcomes with comprehensive focus on life functioning and complex family factors rather than exclusive focus on symptoms; need more effective, and/or more sustained, high quality treatments.
For more information about the MTA study and interventions advocated by Dr. Jensen:
http://www.thereachinstitute.org/ or contact Dr. Jensen:
peter.jensen@thereachinstitute.org.
Autistic Spectrum Disorders and AD/HD: An Attempt to Clarify a Confusing Overlap
(Prof. Peter Hill)
Every AD/HD clinic has seen a number of children who are referred because of inattentiveness yet also have a capacity to over-focus their attention on topics of their own choosing. Often they have social interaction difficulties of ferocious rages. Are they an atypical form of oppositional-defiant disorder or what?
Prof. Hill pointed out that there is an emerging scientific literature on the overlap between AD/HD and autistic spectrum disorder. He has sufficient data from his own clinic on the origins of rage. There are also some findings, mainly from genetic and general population studies that redefine what an autistic spectrum might be. He brought these separate areas of study together in a manner that should be helpful to clinicians and families, suggesting that there is a behavioural pattern with a mnemonic (CREST) that could usefully be recognized in an area where the formal diagnoses are inadequate.
This is a fascinating topic and at the present time, one that is the focus of many studies in the UK, Germany and the US. If you are interested in following up on Prof. Hill's theories, he can be contacted at: 17 Wimpole Street, London W1 and at the Great Ormond Hospital for Children (Attachment & Trauma Team).
You and Me and AD/HD: Successful Strategies for Couples
(Gina Pera)
Current research shows that most adults with AD/HD struggle for decades before receiving a proper diagnosis. Consequently, many carry poor coping skills and distorted explanations of their challenges (Arthur Robin, Robert Brooks and J. Russell Ramsay, among others). In parallel fashion, the partners of these adults also stumble with them through the years, ignorant that AD/HD might in part explain their distress, and forming their own poor coping skills and distorted explanations. Gina Pera also points out that AD/HD symptoms alone can create very real hazards for the individual and the cuple in the areas of finances, co-parenting, running a household and intimacy. Less explored, she says, is the compounding burden of each partner's misattribution, minimization and denial. These two factors, when left unresolved, typically cause these relationships to end painfully - or continue in damaging dysfunctional patterns.
Gina Pera discribed the other issues that these couples face, which further complicat their challenges: when they seek counseling, clinicians typically fail to consider both the neurobiological nature of AD/HD and the predictable poor compensatory strategies long practiced on both sides. Even when the AD/HD diagnosis has been reached and treatment embarked upon, couples find it difficult to find AD/HD-focused expertise in revising the old dysfunctional patterns of relating to each other.
She stressed, however, that the cognitive-behavioural therapy models shown to be helpful in treating adult AD/HD can also help untangle the web of counter-productive strategies, establish more productive alternatives and allow a new optimism to re-motivate couples. Three of her recommendations were: learning about and accepting the neurological underpinnings of AD/HD and the the established treatment protocols; realistically acknowledging the accumulated pain and trauma caused by a partner's AD/HD going undetected for years; and reassessing compensatory strategies and implementing more effective ones, where necessary.
For more detailed information about Gina Pera's approach, consult her latest book: Is It You, Me, or Adult A.D.D? Stopping the Roller Coaster when Someone You Love Has Attention Deficit Disorder (available from
http://www.amazon.co.uk/).
Gifted Children with AD/HD
(Dr. Geoff Kewley)
AD/HD can affect children of all IQ ranges and ability. However, these children who are in the gifted range have some specific issues that can make their assessment and management more complex. AD/HD can be missed in these students without recognition that their difficulties may be masked by their intelligence, hence the importance of an experienced and comprehensive assessment.
Dr. Kewley is a Consultant Paediatrician who established and has run the Learning Assessment & Neurocare Centre at Horsham, West Sussex since 1993. The Centre is a multi-disciplinary clinic, registered with the Healthcare Commission. The Centre specialises in the assessment and management of children, adolescents and adults with a wide range of neuro-developmental conditions, especially AD/HD and related issues, learning, emotional and behavioural difficulties. Patients are referred from throughout the UK and can be seen either on the NHS or on a private basis.
Dr. Kewley was previously a Consultant Paediatrician in the NHS for several years and to prior to that practised in Australia for many years. He has over 30 years experience in the management of children with AD/HD and related conditions. He helped to establish and chairs the George Still Forum, which is the National Paediatric special ingterest group on AD/HD within the Royal College of Paediatrics and Child Health.
He is scheduled to present at our AD/HD Awareness Conference on September 26th, 2009 in Brussels. He is in talks with us to offer his services to children and adolescents who are looking for a comprehensive assessment and aftercare programme.
Summary of Upcoming Events
(Events for the remainder of the year)
September:
07: Support Group meeting: ADHD/AS/Dyslexia advocacy
26: One-day multilingual Conference & Activity Day (St. Anthony’s Hall, Kraainem)
October:
16: Positive Parenting Programme: 19:00-21:00 at 50 Square Ambiorix, Brussels
17/18: Specialised Coach Training Certificate course: (same location)
19: More 1-2-3Magic for Adolescents: screening of DVD and guided discussion
November:
12: Positive Parenting Programme: Quaker House, 50 Square Ambiorix, Brussels
13/14: Specialised Coach Training Certificate course: (same location)
18: TOE to TOE Literacy Programme; teachers (afternoon); parents (evening)
December:
03: Positive Parenting Programme: 19:00-21:00 at 50 Square Ambiorix, Brussels
04/05: Specialised Coach Training Certificate Programme: (same location)
07: Support Group meeting: ADHD/AS/Dyslexia advocacy
We wish you all an enjoyable summer holiday - wherever that may take you - and look forward very much to the upcoming school year.
Warm regards,
Joanne Norris, Ed.D., Education Chair
ADHD/AS/Dyslexia Family Resources Brussels
