Inattention, hyperactivity, impulsivity: here are the three main manifestations of attention deficit disorder with or without hyperactivity, also known by the acronym ADHD or TDA/H. This neurological disorder which often appears from childhood is not always easy to spot, quite the contrary, and in particular in women. As a result, some people have to wait until adulthood to get a diagnosis and treatment, which can lead them to reconsider many aspects of their lives.
“All my life, I was told that I was not organized, head in the air, inattentive. I was told to stop being fidgety, to calm down, to concentrate. I had to reach my 30th birthday for me to finally decide to go to a specialist. The result is clear: I suffer from ADHD (attention deficit disorder with or without hyperactivity, editor’s note), and my shrink is formal: the signs were there since childhood.” This testimony is that of Léa, 32 years old, and diagnosed a little more than two years. This 30-year-old is not the only one to have long suffered from a neurodevelopmental disorder not diagnosed. And ADHD, in particular, has been at the heart of attention for several years.
What is ADHD?
According to DSM-5, American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders and Psychiatric Disorders, ADHD affects people who “exhibit a combination of symptoms of inattention, hyperactivity, and impulsivity, which leads to three different presentations: predominantly inattentive, predominantly hyperactive and impulsive, or combined presentation of ADHD”. A known phenomenon in children, where it is still difficult to determine today, this disorder is particularly difficult to diagnose, as explained Maeva Roulin, clinical psychologist and author of the book “Diagnosis of neurodevelopmental disorders in adults” published on October 7, 2021 by Mardaga editions. “ADHD is a disorder that is often unrecognized and, unfortunately, misdiagnosed. It is often associated with other psychiatric disorders, the frequency of which varies according to sex, age and ADHD presentation.” This explains why some people sometimes do not get diagnosed until adulthood. “It’s not so much that people make the deliberate choice to wait,” says the specialist. These people simply had no other choice.
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This is particularly the case of Fanny, 30, who was diagnosed very recently: “Listening to two friends talk about their disorder, I recognized myself a lot, and that shocked me. I thought everyone was like that. I wanted to know more and understand what I had, if I had that too, if there were solutions to help me on a daily basis.” The result is clear: not only does the young woman indeed suffer from ADHD, but in addition, she had unconsciously gotten into the habit of concealing her difficulties from the eyes of others: “My neurospy explained to me that I had overcompensated, hence the fact that my attention deficit disorder was invisible at the time. And that today with my lack of self esteem and my hypersensitivity, it forms a vicious circle that puts a spoke in my wheels. I’m not yet comfortable with all these terms, I don’t understand everything yet, but I know that this diagnosis helps me feel less guilty.” Delia, on the other hand, often had doubts during her youth: “I am always asking questions, having understood quite early that I did not function like my classmates, from the beginning of college I think. I started thinking about ADHD around the age of 30, when I saw a video that talked about it by popularizing scientific knowledge on the subject. I recognized almost all the symptoms mentioned.” During her childhood, she had been diagnosed “probably slightly hyperactive“, but not enough to require treatment. “My mother never told me about it until I mentioned my first appointment for the diagnosis. If I had been accompanied earlier, my life would probably have been very different.”
Later diagnoses in women
If most reports of late diagnoses come from women or non-binary people, it is because the latter are more difficult to diagnose than cisgender men. According to Maëva Roulin, the ratio among children is generally one girl for four boys to one girl for nine boys. On the other hand, in adulthood, the gap is drastically reduced to represent one woman for every 1.6 men. “It suggests a augmentation of the diagnostic of the TDAH in women aged 19 and older. The existence of gender differences in the diagnosis of ADHD is well documented, with evidence suggesting that ADHD is still a hidden disorder in girls and women.”
In question ? A sexist orientation bias rooted in the education of girls, pushed to be calmer, more discreet than boys. “Girls with ADHD may exhibit less disruptive behavior, hyperactivity and impulsiveness and therefore attract less attention from parents and teachers. Girls with ADHD are often misunderstood and stigmatized, given the societal expectations with regard to female behavior. Externalizing problems, present from an early age in many boys with ADHD, are less likely or appear later in girls”, explains the specialist, who specifies: “It It is well known that men are overrepresented in socially problematic behaviors that have been linked to impulsivity, such as aggressive behavior.Internalizing issues such as depression and anxiety are prominent, and often mask the presence of ADHD among girls and women.
A sexist bias that can have long-term consequences, as mentioned by the clinical psychologist: “Evidence confirms that girls with ADHD are 5.4 times more likely to be diagnosed with major depression and three times more likely being treated for depression prior to their diagnosis of ADHD. These problems may be considered primary, leading to misunderstanding of the underlying neurodevelopmental disorder.” “I have been followed by a psychologist for 5 years”, confirms Léa. “I suffer from a anxiety disorder, and regular depressive episodes. And when I told my shrink that I had started a diagnostic journey for ADHD, she literally replied: “Ah, but you had never been diagnosed? It seemed obvious to me though!”
Impostor syndrome and relief
The diagnosis of ADHD is all the more difficult to obtain in that in some people, and particularly in women, it is accompanied by a impostor syndrome rather important. This is precisely what Fanny was able to observe: “Perhaps also that it took me some time to feel legitimate enough to seek a diagnosis, and to admit that I may not be just an idiot incapable of staying focused 2 minutes, that it’s not 100% my fault.” Same story with Léa: “For a long time I felt useless, incompetent, incapable. I did not understand what was wrong with me, and I had this feeling of not being normal which was undermining my morale. My diagnosis was relief, and the behavioral therapy undertaken in parallel with my drug treatment has helped me regain better control over many aspects of my life.”
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Beyond the damage to self-esteem, a late diagnosis can have many consequences, recalls Maëva Roulin: “ADHD entails high personal and financial costs not only for the people concerned, but also for their families, their friends and their employers.The overlap of symptoms between ADHD and other psychiatric disorders poses a challenge for clinicians, but failure to identify the presence of ADHD may negatively influence the trajectory of comorbid psychiatric or neurological disorders and increase the personal and socio-economic burden The socio-economic burden of ADHD is important to highlight in order to better understand the importance of identifying it in preventing negative health outcomes and reducing the socio-economic costs that a person with ADHD undiagnosed and untreated can impose on our society It is now clear that ADHD imposes a social and economic burden s substantial, not only on the health system but also on those of justice and education.” Indeed: “ADHD is associated with deterioration of physical health. Adults with undiagnosed ADHD may develop several coping and compensatory mechanisms without being aware of their dysfunctions. It is important to remember that many of the consequences and social costs of untreated ADHD could be avoided if this disorder were correctly identified. There is sufficient evidence to show that ADHD medications exhibit robust effect sizes in reducing symptoms.”
ADHD and social media
If ADHD has been at the center of many conversations in recent months, it is in particular because the videos which evoke it on YouTube, Instagram and TikTok are numerous, and have even prompted some people to seek a diagnosis. Many specialists, however, encourage mistrust, especially if this content is not created by health professionals. However, they have a real utility, according to Maëva Roulin. “Information, if it is qualitative, through the media and social networks, makes it possible to make ADHD known and can allow people to start or continue a diagnostic process.”
In case of doubt, the only solution according to her is to speak with a specialist to obtain an accurate diagnosis and the support that goes with it. “The assessment of ADHD should be seen as a multidimensional process, which does not have the sole objective of identifying the main symptoms of the disorder, but which represents an effort to achieve a sufficient understanding of the individual and his functioning. in the context of life. Unfortunately, there is currently no genetic test or single test that can diagnose ADHD. Through careful diagnostic evaluation using specific tools and a complete clinical and medical history, it is possible to capture most of the information needed to provide the most accurate diagnosis and guide the choice of treatment, allowing for a more personalized approach to patient care.”
To help people wishing to undertake a diagnostic course, associations such as Concorde ADHD offer lots of help. “The diagnosis of ADHD in adulthood is our workhorse,” says Alexy, president of the association. “It is an association entirely managed by people concerned. The office and the volunteers are all ADHD and the majority have been diagnosed as adults. Our main activity is peer support and referral to specialists for diagnoses adults, in particular with our specialist card.”
“The objective defined by the High Authority for Health is “to improve the care sector which needs to be clarified, structured and harmonized throughout the territory to allow equal opportunities for each patient”, concludes the clinical psychologist. To be continued, then.
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