ADHD Alliance for a Change

EPA was invited by the ADHD-Alliance for a Change to attend a meeting in Brussels. The Presentation and discussion was hosted by Rosa Estaràs Ferragut MEP on October 14^th, 2014. The Real Voices Report Launch Event brought together experts and stakeholders from various fields. EPA had not been involved in the preparatory actions. EPA’s claim to act as the Voice of European Parents made it reasonable to follow this invitation.

• Press release on the Presentation of "The Real Voices Report"
• The "Real Voices Report" - English - German
• Material and Information on ADHD (Shire website, in co-operation with ADHD-Alliance for a Change)
• Wikipedia article on ADHD

Earlier 2014 the ADHD-Alliance had positioned a white paper on the need to act on behalf of children and adults suffering from ADHD. The report “Real Voices” is a result of ongoing scientific and policy work. It compiles statements, concerns and claims of individuals suffering from ADHD as a diagnosed patient, a parent, relative or teacher.ADHD (Attendance Deficit Hyperactivity Disorder) names a complex variety of behavioral patterns originating from neural constitution. It is not easy to diagnose early. Thus in most cases patients become school pupils failing to concentrate and behave properly in classes. They are stigmatised and frequently the symptoms also cause social exclusion and learning difficulties.

The alliance points out that the high number of ADHD pupils should be seen as an urgent cause for action. They complain that other special needs like Dyslexia and Asperger autism are accepted and treated with special regulations. Diagnosis one of those deficits entitles children to have special support and regulate adapted assessment rules. On the contrary no appropriate rules are implemented for ADHD in any European state. Thus a call for Inclusive education includes the development of better understanding for the experience and difficulties of ADHD-children and measures to avoid stigmatising.

Kate Carr-Fanning from Ireland presented her experience and research work. Suffering from her undiagnosed ADHD she had dropped out of school and after moving to the US was diagnosed ADHD. Literally she concluded: “Now I live with ADHD. I suffered when I did not know!” Just recently she finished her PhD compiling interviews of ADHD patients, their parents and teachers. As consequence of the UN Conventions about the Right of People with Special Needs and the Right of the Child she presented the “… Real Voices” as a consequence of the “Right to Participation”. Being able to reflect and articulate needs and concerns is an important step towards better understanding and including ADHD pupils.

Implementation of networks to provide early and good diagnosis is required. It is important to find the best pharmaceutical and psychological treatment. It is proven that coordinated actions give extraordinary results.

The main conclusions from presentations, panel discussion and exchange of minds with participants:

• Inclusion is a process not a policy: Inclusive societies need inclusive education (this was also stated as a conclusion of EPA’s conference on Inclusive Education in Hamburg, November 2011)
• ADHD when diagnosed is frequently seen as an excuse rather than an explanation and need for therapy
• Parents feel guilty when their child behaves “abnormal” and tend to believe in failure of their education
• Teachers are not prepared to deal with the specific needs of ADHD pupils. Boys typically exhibit aggressive behavior and suffer from social exclusion whereas girls often suffer quietly. Boys’ and girls’ ADHD causes unspecific and specific learning difficulties like dyslexia.
• Due to social exclusion ADHD during adolescence can trigger drug abuse, criminal behavior and suicide

There was no opportunity to contribute to the plenary debate due to the very short time. In the closing networking lunch I had the opportunity to talk to several members of the Alliance and voiced the following positions:

• As a consequence of the EPA-conference on Integration and Inclusion held in Hamburg (October 2011) there is a committed and differentiated EPA-statement on this issue
• EPA as the Voice of European parents is open to listen and integrate the concerns of parents with special needs on behalf of their children
• Explicit expectations and claims on behalf of specific special needs create a tension with main stream interests
• Teacher education needs to provide information and practical preparation to deal with special needs in class but responsibility can neither be assigned to teachers or parents alone. Trans-sectoral co-operation is required to offer good experts’ support in class. The role of teachers needs the complement of services by psychologists, social workers, and other experts.

My participation of behalf of EPA was acknowledged and will most probably result in invitation(s) to further co-operation.

Johannes Theiner
EPA-Ambassador

Final remark:

It seems necessary to comment the delicate step taken by the ADHD-Alliance to accept sponsoring by Shire, a Pharmaceutical company purchasing drugs used in pharmaceutical ADHD therapy. The decision whether at all and when medication is required and why this therapy should be applied is discussed controversial among specialists. Thus the economic interests of any pharmaceutical company could bias the discussion. EPA is acting very carfully to avoid any influence on positions and actions when approached by potential sponsors.