Why is ADHD so discriminated against and how can we overcome the stigma?
ADHD can leave you feeling very alone
James Koppert is the host of Fortean News Podcast. He lectures on ADHD and Neurodiversity and is a youth worker and activist. James performs poetry and Hip Hop and is known as the "paranormal philosopher" due to his ideas on consciousness.
Although many people are aware ADHD exists, not many people know exactly what it is, how it affects people and how we can all support those who have the condition. My name is James Koppert, I am a Youth Voice and Creative Engagement Officer, podcaster, father, rapper, poet, lover and I have ADHD.
I also give talks on the subject and, for many years, have supported young people, parents and teachers in both how to manage the negative traits of the condition, embracing and harnessing the positive aspects. Here are some ways to learn some of the facts and dispel the myths.
What is ADHD?
ADHD stands for Attention Deficit Hyperactivity Disorder. ADHD is a neurodevelopmental disorder. Is not a mental health disorder. What this means, in layman's terms is, if you were to map out the circuitry of a neurotypical person (a person without any disorder), my brain's mapping would look very different.
Like other neurodevelopmental conditions, such as Autism Spectrum Disorder for example, this deeply affects ones executive functions and cognitive processes. In other words, my brain takes in the information through a different route and processes the output in a different way as well.
We therefore navigate the world and the relationships within it in a rather alternative fashion. This affects our behavior, abilities, how we absorb information, the decisions we make and how we interact. Just to complicate things further, there are three subtypes of ADHD: Predominantly Inattentive (sometimes just called ADD), Predominantly Hyperactive-Impulsive and the third is someone with a combination of the two.
Numerable different traits exist within the subtypes, many of which overlap, but to generalize just for example; the Predominantly Inattentive type is more common, although not exclusively, diagnosed in females and shows itself as being in a more distracted daydream, like state compared to the more male diagnosed Predominantly Hyperactive-Impulsive type, which often includes disruptive behavior and acute hyperactivity.
The name ADHD suggests an issue in maintaining attention, but it is actually a poor choice of words as this is only partially correct. People with ADHD also have Hyper-Focus. If I enjoy something I am doing I can have complete focus for hours on end. If I am deeply involved in reading a book for example, a car could crash directly in front of me, while a UFO flies overhead and I may not even notice.
This is why we often hear frustration from parents whose child, seemingly, cannot concentrate on anything they deem important, such as schoolwork, and yet can spend an entire day on their games console. If someone with ADHD is not stimulated by an activity, they cannot focus. It is not that they are bored or lose concentration, they actually cannot focus.
What causes it?
Dopamine is a hormone that plays a role in how we feel pleasure and impacts our choice in what activities we seek to do each day. It is the brains reward system. However, research has found that with ADHD, there are less of the proteins that transport dopamine to the brain. This affects emotional regulation but also systems of pleasure and reward resulting in two factors.
Firstly, an ADHD brain is constantly searching for stimulus and second, an activity that yields a low dopamine response becomes very insignificant to an ADHD brain. This is why people with ADHD are seen as having a low attention span. If someone with ADHD is not interested in a task they will find it exceptional difficult to concentrate, not only that but their senses are searching for the stimulus their activity is not generating.
Therefore, on partaking in an activity I am not interested in, if I hear a conversation in the room, a bird will fly past the window or a smell will come from the kitchen and I am instantly drawn away from my task or activity. As you can imagine in a classroom setting this can create complications.
Particularly when you factor in additional traits such perpetual fiddling and fidgeting, impulsiveness like shouting out, looking like you are not listening (even when you are), problems organizing, resulting in arriving late or forgetting your homework and issues such as frequently losing your equipment.
With no doubt, you are going to be very quickly noticed by your teacher. There was one desk in my class that was directly in front of where the teacher sat. I was the boy who was always moved and placed at that desk, or even sat at the teacher's desk itself.
Those were the good days.
On other days, I would be outside the classroom altogether. My greatest issue with this is I was not particularly misbehaving and actually working my hardest to succeed. I have worked with young people who would try their utmost to concentrate and behave but still receive sanctions and be penalized.
How to approach it?
ADHD Awareness Month is an important issue, as punishing someone with ADHD for their traits is like punishing someone diagnosed with hearing issues for not listening to you. At the same time, I hold sympathy for the teachers, as attempting to determine if an ADHD child is trying hard or purposely playing up is as difficult as deciding if someone with hearing issues cannot hear you properly or is purposely ignoring you.
Despite this difficulty, it is a factor that needs to be effectively determined or young people will simply give up trying, if even when they do, they receive sanctions anyway. The factor of effort equals reward is removed altogether and thus, takes out one of the most important motivating factors in human behavior.
It is not just in the classroom people with ADHD struggle. I started at a primary school in Coventry with five hundred pupils and despite this large number, could not find one friend to play with me. I walked around the playground asking various groups "can I join in your game?" to which I was always responded with a "no".
With this, I am not alone.
Often children and young people with ADHD will be socially isolated, more frequently the victims of bullying and like me, be the only kid in the class not invited to the birthday party everyone else is going to. Our hyperactivity can seem odd to other children as can our lower ability to navigate social situations. Also, our lack of impulse control, issues waiting turns, acting without regard for consequences, heightened emotions we are not socially conscious of showing in public, as well as having little grasp of appropriateness boundaries, means, even if you do get invited to a party, most parents will often not make the mistake of inviting you a second time.
Nevertheless, please do invite them. Find out what they are interested in and give them that task or activity to do. I can attest to the fact that the one party you were invited to stays in your mind as a beautiful happy memory for the rest of your life. Bear in mind, it is not just the children who struggle. It is the parents too.
Parents of ADHD children have to watch their child struggle, including all the emotional fall out that comes with it. They are the parent frequently called into school about their child's actions, as well as repeatedly and inaccurately being thought of as a bad parent as why else would their child behave in such a way? Parenting styles have proven to have no factor on the development of ADHD.
I cannot deny, I have met parents of ADHD children with poor parenting skills, as well as some of the very best, most attentive and incredible parents who all share similar struggles. Despite how incredible they are, they will often blame themselves thinking they could have done a better job as the rest of the outside world seems to be pointing the finger at them same time.
Teenage years are also particularly troublesome. Many teenagers have difficult mood swings but with ADHD, this is often amplified to a level of extremity. My mood would often be happy and excited; I would be on cloud nine emotionally, which would inflate my hyperactivity and poor impulse control. My Hyperactivity would cause me to do silly things that would draw attention to myself and cause embarrassment, so I would then drop into the pits of utter despair.
This could happen accumulatively multiple times in just an hour, and I am not alone. Studies have shown teenagers with ADHD are highly more likely to self-harm than neurotypical teenagers, plus the risk of teenage suicide with young people with ADHD is significantly higher than the general population. This is often due to the low mood and anxiety associated with the condition, but also due to factors discussed earlier such as social isolation, higher risk of bullying and a general perception that one is just very different to their peers at an age where one has deep sense of wanting to fit in some sort of social group.
Living with ADHD
For some patients, doctors prescribe medication to treat ADHD that can be successful. The medication, usually a type of amphetamine, works by increasing the levels of dopamine in the brain and reduces the impact of many of ADHD's negative traits. For others, however, it helps little or has negative side effects.
Many people overcome their traits into adulthood and learn how to better manage the condition leading relatively normal lives. Despite this, many traits do still exist and can impact adulthood and our relationships (and those who we have relationships with such as partners, families and friends). Personally, despite my age, I still have acute and obvious ADHD identifiers. For example, I cannot be in any meeting or situation where I have to sit still without having something in my hands to fiddle with or draw doodles while my leg continuously shakes.
Because of this, I am in perpetual motion and have to do this in a way that does not draw obvious attention to myself. My partner finds it hilarious that brushing my teeth for two minutes does not provide me with enough dopamine stimulation while I am scrubbing away and so, at the same time, I have to read a book, watch a video or play a game on my mobile.
Speaking of mobiles, these little fixes of dopamine are problematic for people with ADHD who can find it hard to take their phone out of their hands due to the constant hit of stimulation. They also provide something for fidgeting hands to do and often one has to be hide them away if one wants to get any work done. In fact, addiction in adulthood is also proportionately larger in the ADHD community who are often searching for further methods of sensory invigoration.
Some studies suggest the difference in brain mapping can also make one more susceptible to being addicted. People with ADHD are more likely to be in trouble with the police due to poor impulse control, problem solving issues and executive functioning deficits. Some research has shown people with ADHD are twice as likely to commit a criminal offense and three times more likely to be arrested.
People with ADHD also take higher risks resulting in more driving accidents and injuries in general. People with the condition are susceptible to impulse buying to an extreme level making money management very difficult and, on average, vast higher levels of debt compared to the neurotypical population. ADHD adults are far more likely to have marriages and relationship break down as well as other negative factors such as managing to keep things tidy, being on time and our organizational skills are often non-existent.
Of course, not everyone with ADHD will have all these traits and the condition is on a spectrum meaning, if they do have them, they have them at different levels. On top of these negative issues, other conditions occur in high frequency in people with ADHD. A vast quantity will also struggle with anxiety, sleep disorders, Tourette's, autism, dyslexia and many more.
I also have fibromyalgia, a very painful and debilitating physical disability. In a recent study of fibromyalgia patients it discovered that nearly half had ADHD as well, demonstrating some sort of link between the brain structure and the two conditions. With all these significant problems, it is no wonder, that yes; adults with ADHD are also at a significantly higher risk of suicide than the general population. It also does mean that we can be very offended when neurotypical people say things like, "I think I am a little bit ADHD, I get distracted easily", trust me, you are not and you have absolutely no idea.
I have painted a somewhat grim picture, and living with ADHD can be difficult. My childhood and teenage years still feel very dark, filled with feelings and emotions you would not wish on any child. However, there are reasons why ADHD continues to exist and has not just been bread out of the human genomes. Researches have hypothesised that ADHD had a clear function within our communities of the past and some of those positives continue in modern society.
For example, if a raiding tribe appeared in your village placing it under threat, the village member with ADHD would be the very fastest to draw their sword and also be able to attack with fewer inhibitions or regard for consequence to their own safety. If there was a battlefield, one side had neurotypical people, and the other side had ADHD soldiers, the ADHD side would annihilate the neurotypical soldiers for a number of reasons.
First, they would hold hyper-focus, they would not be distracted by anything else other than the battle. Second of all, their heightened senses would see, hear and smell another opponent coming from the flank allowing them to defend themselves. Their reactionary times to respond to danger in a fight are faster.
They would hold less fear and inhibitions and so be able to think more clearly in the heat of the moment. There is little wonder that athletes at the highest level are more proportionately ADHD. Their split second thinking and reflexes, coupled with enjoying working under pressure and not being intimidated by large crowds or the big moments, make them perfect candidates. ADHD people often do not do things by halves either.
For example, when I got into football I was featured in the media and had the captain of a top four premier league club I support sending me presents in the post. When I got into mountain boarding, within a year I was writing for the international glossy magazine and organizing the music stage at the ATB World Championships.
When I got into playing music, I built up half a million online plays (before that was even a thing) and was playing all over the world with some of the biggest labels and producers wanting to work with me etc. Hyper focus and the passion one gets for the things we enjoy means we pursue our interests, hobbies and yes, even careers with a high level of enthusiasm, commitment and hunger rarely seen in others.
My irritability in not knowing the answer to something means you will want me on your quiz team. My strong emotions means the love I feel in my relationship and to my children means they know they are adored. Having an alternative mind enables me to see alternative solutions or have creative and artistic ideas that are unique. People with ADHD are often a lot of fun to be around, as our energy and enthusiasm can be infectious and when we do fall in love or make a new friend we really like.
The only downside of this, is we get bored of them very quickly and then move on to someone else. However, if you are a person that keeps those dopamine receptors firing then you get keeps. On top of all these positives we can sometimes decorate a house in a day, deliver fifteen sentences in the time it takes someone else to think of one and, I must admit, many people are impressed that if they knock a cup off the side I have usually caught it before it hits the floor, with a ninja like ability.
If we are able to harness these positives of ADHD we are a little bit like superheroes. In fact, some research from psychologists in the U.S. noticed patterns their patients often had telekinesis, psychic and other parapsychological abilities, potentially due to the alternative wiring of the brain.
Maybe we really should start wearing capes.
How can we make resolve the stigma around ADHD?
ADHD Awareness month is essential. For many neurodevelopmental disorders such as autism or cerebral palsy for example, workplaces, schools and communities do try their best to provide support, alternative arrangements and make efforts to not discriminate. In comparison, from my experience and the young people I have worked with, in ADHD there is the least assistance, adaptation, effort to understand or allowances made for children, young people or adults with the condition.
Dog owners would not get a Beagle and expect it to act like a Bassett Hound, they would expect to take their Beagle on additional walks and provide it with more stimulating toys, but society often does expect me, and others like me to be a Bassett Hound. The amount of times I have been asked, "why can't you just be normal?"
Similarly, we put children in young people with ADHD in a classroom setting, a setting almost impossible to concentrate in and then punish them for being disruptive, shouting out, not listening or having a lack of concentration. The analogy I always give to schools is; would you put someone in a wheelchair on an adventure assault course and then punish them for not succeeding in a set time?
It is time for a complete rethink on how we educate ADHD, if you stimulate an ADHD mind effectively they would hyper focus in a classroom and go home and cram even more knowledge into their brains addictively until they know enough about the subject they could teach it themselves. This should be a target and not utopian thinking.
Instead of punishing children and young people with ADHD and making them feel like they are failing and standing out, learn about the condition and teach them about it. Ask them how you can assist them in overcoming their negative traits and work together in achieving this so they see you as an ally rather than another negative authority to rebel against.
In the workplace, it is utilizing those positive abilities and providing workspaces that stimulate and allow the ADHD mind to get on with their task. It is using technology to create a jobs list, or filling out calendars so meetings are remembered and they arrive on time and they can continue to succeed (as well as not staring too hard when we are fiddling and fidgeting in those meetings).
It is inviting that one child to the birthday party and giving them the jobs and tasks to do while they are there so they focus and feel wanted and have worth. It is understanding that, like autism, we can have sensory issues to do with smells, sounds and touch as well as issues with social understanding, appropriateness and communication. Most importantly, it is getting that suicide rate down, being a good employer, teacher, friend, companion and if someone with ADHD doesn't look themselves, it is making sure they are alright.
Although we may win in any battle with a sword in our hands, the mental health battle and the fight for acceptance is one ADHD people seem to be losing.