ADHS Deutschland e.V. – ‘Raising Awareness about Undiagnosed ADHD in Women’

#BrainLifeGoals Project Grant Winners 2020

‘Raising Awareness about Undiagnosed ADHD in Women’: Awareness Raising Initiatives/Campaigns on Access to Treatment, Services or Support for those Affected by Neurological Disorders

The campaign is geared towards women who do not know that they have ADHD, see our awareness-raising initiatives/campaigns and are motivated to seek diagnosis, support and treatment in order to change their lives.

In Germany, Belgium and many other European countries, the ADHD diagnosis ratio for boys vs. girls is 5 to 1, for adult 1:1. One reason for this is that in girls, the expression of their symptoms is more subtle, presenting at a later age and initially, less dramatic than in boys and as the ADHD assessment scales still used during diagnosis by clinicians are those created originally for boys, ADHD in girls in often a hidden disability with many girls remaining undiagnosed or misdiagnosed in childhood and adolescence. Thus, they reach adulthood without any knowledge of what is making their lives difficult.
Yet, women with undiagnosed ADHD have greater comorbid risks and a greater severity of outcomes than males, but when problems surface in adulthood, these are often misdiagnosed with depression, eating and/or Anxiety Disorders as well as other comorbidities (with reference to the presentation by Prof Sandra Kooij as presented at the UKAAN conference 2017 which will be emailed to EFNA)

Females with ADHD are more likely to have inattentive symptoms, a tendency to internalize symptoms and hormonal involvement, especially during puberty and the menopause. Females are more compelled to conform and live up to society’s expectations when this is extremely difficult for those with undiagnosed ADHD; thus, they develop a sense of inadequacy, guilt, shame and low self-esteem and tend to have poor self perception. Most women with undiagnosed ADHD experience chronic psychological stress, anxiety and depression, are prone to having unhealthy relationship dynamics and marital discord.

In women with undiagnosed ADHD who are high-functioning, have a high IQ with acamedic and professional success, there is a great disparity between their intellectual and social/emotional functioning. To mask symptoms, they compensate to the detriment of their mental health; perfectionism is rife in this group and a reluctance to seek help so that they are less likely to be diagnosed. Burn-out is a common occurrence in high-functioning women with ADHD and sometimes, – but not always – this may lead to their being diagnosed with ADHD and related comorbidities. In too many cases, however, it leads to misdiagnosis of observable behaviours; depression, eating and/or anxiety disorders again being the most typical (Dr. Ellen Littman, Conference Brussels October 2017)

Comorbid issues for women with undiagnosed ADHD include anxiety, emotional dysregulation, depression, chronic sleep problems, Bipoar Disorder, substance dependence, disordered eating, addictive behaviours, personality disorders, among others.

We, therefore, feel that it is time to raise awareness about this situation in a different way, Women who don’t know that they have ADHD do not look for information regarding the condition in the usual places that this information is provided so even if ADHD organizations write about ADHD in Women and Girls, they are usually preaching to those ready to be, or already, converted. Our idea is to feed information on social media in unexpected places, especially Instagram, to spread the word about ADHD women in a way that is more accessible to a mainstream audience. In Germany, for example, there is a (radio/TV?) channel for women between 18 and 35 who are given a platform each week to share information about themselves and issues that are close to their hearts:
https://www.instagram.com/maedelsabende/?hl=de and https://www.funk.net/channel/maedelsabende-11982/aktuelle-instagram-story-von-maedelsabende-523555?playmode=story&watchlistmode=story

We want to create a website especially for “ADHD in Women“ with a focus on the personal stories of women with ADHD and specific related information.

To facilitate this goal, we want to create a website especially for “ADHD in Women“ with a focus on the personal stories of women with ADHD and specific related information. This would include creating an online Self-Assessment Questionnaire specific for women divided into sections, such as university, workplace, personal relationships, parenting, etc., aimed at getting the attention of those who think of themselves as successful but are struggling in certain areas. This instrument would be different than any that currently exists in that it would contain a list of indicators (red flag behaviours) under the heading, “Is this me?”, “Have you ever found yourself in a situation such as this?” or “What would you do if…?” This would not be a clinical platform, but a fun place for women of all ages to express themselves, learn more about what makes them who they are and how to navigate their limitations while recognizing and appreciating their strengths.

We would create this platform for women in English and German at first and once it is successfully running in Belgium and Germany, we would like to extend this project to other European countries in their own languages. It is a project that could really make a difference and it is very close to our hearts.

Our team consists of at least one psychiatrist, specialised in female ADHD (e.g Prof. Sandra Kooij from the Netherlands or Dr. Jana Engels from Germany), “a Social-Media expert“ with special knowledge in digital media, online-journalism and intercutural communication (e.g. Angelina Boerger), women living with ADHD or having family members who are affected: Dr. Ed. Joanne Norris, Chantel Fouche, Beverley Sinton, Dr. Myriam Bea, one representative from ADHD, ASC & LD Belgium (see www.adhd-edu.be) and one representative from ADHS Deutschland e.V.