This month, our featured charitable cause is the Saudi ADHD Society: we find out how a problem with ‘difficult’ children is finally receiving the recognition it needs
The behavior disorder ADHD was first noted more than a century ago in 1902 by a British pediatrician, but it wasn’t until 1987 that after years of piecemeal research, controversy, discussion and labelling, the diagnosis of ADHD became accepted.
The Saudi ADHD Society was founded in 2009 by a group of specialists and community members dedicated to improving the lives of people affected by the condition. We asked the Society to tell us more about its work and aims.
What is ADHD and what causes it?
ADHD stands for attention deficit hyperactivity disorder, defined as a neurodevelopmental disorder – which means simply that it affects the development of the brain in childhood and adolescence. It affects around 5 percent of people worldwide and has far-reaching psycho-social consequences if left untreated.
Each person affected by ADHD may experience different problems, but these could include difficulty paying attention, finishing tasks, being easily distracted and acting impulsively.
It’s thought to be genetic, with a possibility of increased risk associated with environmental factors, head trauma and other events that might affect certain networks in the brain.
ADHD tends to run in families, with children and adults of any age being affected. In fact, if people reach adulthood without having been diagnosed and receiving early intervention, the consequences on their lives can be disastrous. But the Society can help, no matter how late the diagnosis or how old the person concerned.
How did the Society begin?
Four years before the Society was founded, two initiatives came together. One was a parent-led grassroots initiative to support families of children with ADHD, and the other was a hospital-based initiative to raise awareness about ADHD among teachers and healthcare providers.
We quickly outgrew our capacity as a loose confederation of volunteers working out of the corner of a doctor’s office and realized we had become the epicenter of a national movement. The Ministry of Social Affairs gave us the chance to establish an official Non-Governmental Organization (NGO) to take up the mantle and continue the work we had begun.
We started by aiming to raise awareness about ADHD among teachers and specialists, reducing stigma and forming partnerships. In 2016, our strategy grew to encompass people of all ages affected by ADHD, and in 2018 our scope was officially increased to cover all regions of Saudi Arabia.
Why is your work important?
It starts with awareness. We consider this to be the most essential task which we undertake. Awareness precedes action, which is the catalyst for change. Receiving an ADHD diagnosis is life-changing, the start of a journey towards a better life. We freely provide a coordinated, comprehensive set of services and supports to help people on this journey in a way that only a non-profit organization can.
Who benefits and how do you help them?
The direct beneficiaries of our specialized programs are: children, young people, and adults with ADHD; their parents and caregivers, educators, healthcare professionals, and the general public.
For people with ADHD we provide care services including, but not limited to, referrals for evaluation and diagnosis, individual counseling, support groups, coaching, skills training, and mindfulness programs. For families, we provide consultations, behavior modification programs, support groups, parent coaching, and a parenting program.
For educators, we provide awareness and training programs. For healthcare professionals, we provide the national ADHD guideline and implementation support. For the general public, we provide awareness campaigns, and consultations for those wishing to find out more and perhaps get help. Even for those who don’t fit our acceptance criteria, we will do our best to direct them to an appropriate avenue of support.
How do you use funding from donations?
We use 100 percent of donations to support our direct beneficiaries – children, young people, and adults with ADHD.
What are the Society’s notable achievements?
Our earliest achievement was the signing of the National ADHD Program from the Council of Ministers, which outlined the most basic responsibilities of different sectors in supporting people with ADHD.
More recently, however, the Saudi ADHD Society received the first prize in the SABIC National Award for Mental Health Promotion for its swift response to mental health needs during the Covid-19 pandemic.
In 2020, the Saudi ADHD Society also published the first national clinical practice guidelines for the management of ADHD in Saudi Arabia, which were launched by the Minister of Health, endorsed by the Saudi Health Council and five scientific societies, and are freely available online in Arabic and English.
Can you summarize any projects in which you’re involved?
The Saudi ADHD Society is currently working with several partners on the multi-stage national ADHD survey, a foundational research project that will inform national policy, resource assignment, and service provision. We’re also working with a university on a higher diploma on ADHD for specialists.
What advice can you give to people who think they might have the condition?
Ultimately, knowledge is the beginning of the solution. If you find yourself looking around at other people and wondering why they don’t seem to be struggling in the same way that you do, then ask for help. If you’re constantly saying the wrong thing and upsetting people, no matter how hard you try, then ask for help. If you keep on trying harder, but trying harder just doesn’t seem to be good enough, then ask for help. Whether it is ADHD or something else, things can get better.
How do you go about getting a diagnosis? Is this process difficult?
Diagnosis is preferably done by a multidisciplinary team led by a physician with experience dealing with ADHD. As people often end up in a doctor’s office as a result of behavioral issues or mood problems, it can be complicated by the need to first rule out other possible explanations. Screening tools can help, but a lot will rely on the physician’s clinical experience and knowledge of ADHD.
They will want to know: how long have the problems persisted? Where and when do they happen? Does anybody else in the family behave in the same way (or did they used to when they were the same age)? Depending on their observation in the clinic, they may ask about diet, sleep, eyesight and hearing, and many other things.
What are typical symptoms?
“Symptoms” is a very clinical way of looking at ADHD. Yes, clinical diagnosis is essential, but people with ADHD are more than a collection of symptoms. Clinically, it helps to be able to focus on some core issues, or symptoms, such as problems with attention switching, sustained attention, impulse control, restlessness, and other related issues. But ADHD will often lead to difficulty maintaining friendships or relationships, sibling and parental strife, smart kids coming at the bottom of their class and constantly getting in trouble, or conversely kids who are so quiet they get overlooked and are labelled as daydreamers.
These will frequently be the big issues in their lives and the reasons for them seeking professional help. In other words, it’s not always neatly packaged as a collection of symptoms. Indeed, even the name of ADHD in common parlance can be misleading, especially as it lacks a neat abbreviation in Arabic, and is fairly commonly abbreviated simply as “hyperactivity”. Not all people who have ADHD have any hyperactivity, and even those who do may not express it externally, not to mention it being shadowed by mood disorders such as anxiety and depression when untreated.
How is ADHD usually treated?
In young children, training parents is the most important intervention. In older children, teenagers, and adults, the first-line treatment considered by physicians is medication. Medication is safe and effective, but should be used as part of a comprehensive treatment program. However, it is always the parent’s/patient’s choice, and doctors are obliged to offer alternatives, according to the patient’s preference.
Various behavioral therapies and significant lifestyle changes may have some degree of success. You can refer to the Saudi ADHD CPG for more information about types of treatment that are recommended and not recommended.
Are there any effective holistic ways of treating ADHD?
The most effective evidence-based treatment according to medical research is medication, possibly supported by behavioral interventions. A more holistic approach requires us not to look at the well-known clinical ADHD symptoms, but rather to take a broader holistic view of the individual, their lifestyle and environment, and to look at overall wellness as an outcome rather than symptom reduction.
In these terms, we are not “treating ADHD” but rather aiming to improve the lives of people who have been diagnosed with ADHD, and the Saudi ADHD Society’s programs and services are specifically designed with this in mind.
Are there common misconceptions about ADHD?
“ADHD does not exist” – this must be the most widespread and most controversial statement about ADHD. As a behavioral syndrome it doesn’t exist in the same way that a broken arm, for example, exists as a clear physical problem. However, the problems that are faced by people with ADHD as a result of the differences in the way that they think, behave, and feel, are very real.
The real question is: do the people who come looking for help because of the struggles they are facing in life (which we call ADHD) need and deserve our help or not? And the undeniable answer is: yes.
If you’d like to find out more about ADHD, or any of the issues raised in this article, please click here to contact the society directly.