The information ADHD on the Internet is in large part, based on subjective, emotional based "facts" about ADHD and ADHD medicine in particular. The media have a tendency to focus on the most exciting issues, like drug abuse, violence, poor social skills and of cause, the basic concept of how someone suffering from ADHD is just weird in general, and annoying in particular. This article will hopefully combat this ignorance, based on scientific facts and my personal view on ADHD, as seen from the inside, by someone who himself suffers from ADHD.
The information ADHD on the Internet is in large part, based on subjective, emotional based “facts” about ADHD and ADHD medicine in particular. The media have a tendency to focus on the most exciting issues, like drug abuse, violence, poor social skills and of cause, the basic concept of how someone suffering from ADHD is just weird in general, and annoying in particular. This article will hopefully combat this ignorance, based on scientific facts and my personal view on ADHD, as seen from the inside, by someone who himself suffers from ADHD.
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Hi, my name is Peter, and I am a 46-year old male, living in Denmark. I was diagnosed with ADHD at the ripe age of 40, while I was living and working in Los Angeles. Since then, I’ve dedicated my life to seek knowledge about the mental disorder that I suffer from, as well as creating a community for adults (and parents) were we can discuss how ADHD influences our life, biologically, mentally and not least emotionally. Our discussions are based on facts, scientific facts, and we have a rule that “Everyone is entitled to be right, all of the time, but no one have the right to be right, all of time” … What this means is that we encourage debate based on facts, and support based on emotions, since it is not possible to conduct a factual-based, emotionally charged issue, without getting “down and dirty” and that we do not allow in our community. We all come from very harsh backgrounds and the triggers and traumas are ripe for explosion, and we recognise this and outsmarts it by splitting the debates into two different strings: a factual and an emotional based debate. This works wonders and I then use my education in behavioural psychology to bring these to worlds together, by giving the interpretation of why there is a discrepancy between facts and emotions, and were we go wrong in understanding each other. This is actually working, and working very well, in our closed Facebook Group with 200 members, which is quite a feat.
Dr. Russell A. Barkley, Ph.D. is considered as one of the foremost scientists on ADHD today, and he has worked in research and treatment of ADHD, for more than 40 years. In 1996, his book “ADHD and the Nature of Self control” was published and since then, it has become that foundation for the theory of ADHD, on which all diagnostic systems, DSM (USA) and ICD (WHO/EU), are based upon today. Since 1996, Barkley’s theory have been challenged by numerous scientists around the world, trying to test its assumptions, and it have only proven to be more and more correct, as the more than 30,000 studies of ADHD have been conducted over the years, and which all confirm the initial assumptions, made by Barkley in his 20+ year old book.
In 2015, Barkley chaired as the Editor-in charge of the latest edition of the de-facto clinical guide to diagnosing and treating ADHD, called “Attention-Deficit Hyperactivity Disorder, Fourth Edition – A Handbook for Diagnosis and Treatment” which have sold more than 85,000 copies as of today, and which with its almost 900 pages, focused solely on ADHD and from every angle, is the absolute most complete tool for diagnosing and treating ADHD, that we have today.
I have, personally, benefitted from this book and his many lectures which you can find on Youtube, and where Barkley educates clinicians, explains the deep neuroanatomy and neuropsychology of ADHD, as well as give parents guidelines on how to best cope with their children’s ADHD symptoms. Furthermore, Dr. Barkley have shown me the great honour of actually taking me and my research on ADHD, seriously, and he has on numerous occasions taken time out of his very busy schedule, to answer my emails, and set me straight on the topics and findings I present him, from reading the latest studies on ADHD, to ensure that what I write on my blog, ADDspeaker.net, is not only helpful and factual, but is also based on my personal understanding of what the science says, as read by an 46-year old man, who was diagnosed with ADHD at age 40, who has no background in medicine, psychiatry or psychology, but was determined to understand all that he could, about this very complex mental disorder, that we call ADHD.
One of the things that frightened me the most, when I began being treated for my ADHD, was the massive scare campaign that have been going on for years now, on all the things that ADHD medication were supposed to due to you and your brain, a campaign that I have later found out has its roots in Scientology and which is also being promoted by people who believe that ADHD do not exist or that it has been created by Big Pharma to make money. Everywhere I look on the Internet and in the media, the same slogans and dis-information were being relayed, so I was, like any other sane person totally freaked out by having to take this kind of medicine, for my newly discovered mental disorder, ADHD.
I therefore headed to the vaults of PubMed, were you can access more than 30,000 scientifically sound, peer-reviewed and published in journals, evidence based, actual factual knowledge on what ADHD medication is, how it works, and what effects and side effects are known, about this medication. After taking some time to get acquainted with the lingo of such studies (I’m a 25 year veteran of IT Management, with no formal education), I began to understand what the science told us about the real facts of what ADHD medication is, what it does and how it affects our body, also in the long run.
This is what facts I have collected during my 6+ years of full-time dedication with Autistic Hyperfocus (yes, I have now also been diagnosed with ASD) and which I have confirmed with either Dr. Barkley or the scientists that have published these studies, personally and throughly:
ADHD is a neurodevelopment disorder, that is pervasive and that we are born with. The root cause of ADHD can be found in either genetics (70%) or neurobiological and environmental causes during pregnancy (30%).
You are born with ADHD and you will die with ADHD, it is not a disease, it is a disorder, and that distinction is very important to understand, as a disease, like cancer, may be treated so that the disease is no longer present in the body, whereas ADHD is a disorder, a neurodevelopment disorder, that causes our physical brain growth to be delayed by typically 30-40%, compared to others at the same physical age. This is due to the fact that ADHD causes to brain to grow, asynchronously, so that the different areas of the brain that is needed for the higher levels of the brain to be created, are delayed for the most part, apart from the Motor Inhibitory System, which is the real cause of our hyperactive, impulsive and inattentive behaviour.
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The Inhibitory System in the brain is “out-grown” by the Motor Functions, so that our brain is not able to control our actions and behaviour as is to be expected by at certain age. This causes the person with medicinally untreated ADHD, to become less inhibited and therefore more prone to an erratic, emotional, impulsive and short-sighted behaviour, which presents itself to others as mere “bad parenting”, “Wilfully non-compliant with social norms”, “Aggressive and Child-like”, “Irrational and overly emotional” or simply caused by to much sugar in our diet or as a product of to much computer or television time, combined with lazy parents that don’t have the will, intelligence or willpower to adequately raise their children …
These are the stigmata, prejudices and everyday remarks that families with ADHD face, everywhere and anywhere, at any time, at any place and at any expense, especially from uneducated, narrow-minded and thoughtless people, who do not understand that the behaviour seen is no choice, this IS this disorder!
Not one single person suffering from ADHD have had any choice is this matter, it was predetermined to be their destiny as soon as the egg was fertilised and we came into existence, inside our mothers voom, and which we have to live with, from conception to death, and try to manage and cope with, in any domain of life that you can imagine. ADHD is so complex and so wide-ranging in its sympthomology, that it affects our quality of life so profoundly that the United Nations have given persons which suffers from ADHD, equal standing and equal extended human rights, as is given to any other persons, suffering from a chronic, seriously debilitating, physical or mental, pervasive illness or disorder, that gives the person a handicap, when faced with the demands and norms presented by society in general, and that we do not have the ability to meet. Remember that you cannot BE disabled as per se, you can only EXPERIENCE a handicap, when faced with society’s norms, expectations and demands!
It is estimated that 5% of a population is at risk of being born with ADHD (called prevalence) and millions of people across the world, of any race, gender, ethnicity, or culture are just as likely to being born with ADHD, as anyone else. It is a known fact that ADHD (primarily the genetic variation) is one of the most inheritable illnesses or disorders that we know of, with more than 50% likelihood of being born with ADHD if your parents carry the ADHD genes and even more if you are a identical twin, where the risk is more than 80% of both children being born with ADHD!
As with many other disorders of the brain, ADHD is very susceptible to so-called comorbid illnesses, or what we call “secondary” to our ADHD, in everyday life. Actually it is more common to have ADHD with at least to other mental disorders, like depression or anxiety, as 80% has either of these and more than 60% have both of them, up top of their ADHD. So the most common pattern is that we have 3 (or more) mental disorders to cope with for more than half of all those who suffers from ADHD!
This is what makes ADHD such a complex disorder to live with, since not only do we have to cope with the ADHD symptoms, but also with all the symptoms of depression and anxiety as well, everyday. This is the main reason that science has documented that people with medicinal untreated ADHD, have higher-than-normal risk of dying “at an unusual age”, compared to the general public and that this risk is above 50%, compared to the norm! Likewise we know from the science data, that people with medicinal untreated ADHD, are more likely to die “of unnatural causes” before the age of 43 years of age, which I 3x times higher than the average in the general population, simply due to accidents, life-style based diseases (diabetes, obesity, smoking, drinking etc), as well as have an 20-50% higher risk of suffering from alcoholism, drug addiction, over or under eating, self-harm and suicide, as a result of their medicinally untreated ADHD, in childhood, adolescence or adult life.
That is why it is so extremely important for me to educate you as a new parent of an child that suffers from ADHD, that ADHD medication is not, I repeat NOT, harmful in any way, to the vast majority of the millions of people, like myself, that have to take these pills, everyday, to cope with what life demands of us. You must understand that ADHD medication is one of the absolute most well documented, well studied and well working medication that we know of, of any and all drugs on the market, and this is based on solid research from independent researchers, clinicians from around the world and not to forget, the millions of people, children and adults, that depend on these drugs to function better in life, to improve their quality of life for themselves and their families, as well as society in general, everyday!
We have more than 60 years of data from US prescriptions of ADHD drugs, more than 30,000 scientific studies and statements from the vast majority of people (80% have instant and positive effect of being treated with drugs for ADHD, regardless of variation of ADHD (ADHD-C, ADHD-PHI or ADHD-PI), age of the patient, comorbid disorders present, gender, race, ethnicity and more) to back up our own personal claims of the life-changing effect in our own life, without all the hyped up side effects that critics and media seem to focus on, but with massive beneficial, both mentally and socially, positive effect, as our own personal experience, everyday!
So finally, and as an adult with ADHD that was NOT discovered in childhood, and therefore having felt the profound impact of what happens in life, when your coping skills, your masking and your social skills no longer can spare you from the reality of “being different, bend but not broken” from living a life in constant vigilance, distracted by your own senses and the environment you life in, every second of every day of your life, managed by our most basic fight, flight or freeze response, with no control over your verbal and non-verbal behaviour, your thoughts, your decisions, your foresighted-ness or even your sense of time, when all of the brunt force of 40 years of living like this, finally takes its toll and you keel over with a massive case of exhaustion, depression, anxiety and self loathing guilt for not being strong or wilful enough to cope with life, like everyone else!
Personally, it has taken me more than 6 years in constant recovery and with a massive support, caring and friendship from my extended family, my fellow adult friends how live with ADHD, Parents of children with ADHD, as well as the openminded, sharing, respectful and genuine response that I’ve been shown, from mental health professionals, researchers and last but not least, my mentor (and friend) Dr. Russell A. Barkley, Ph.D.
[quote]PARENTS, GRANDPARENTS and SPO– USES – PLEASE EDUCATE YOURSELF AND LEARN WHAT THE TRUTH ABOUT ADHD MEDICATION REALLY IS, SO THAT YOU CAN SAVE THE NEXT GENERATION FROM HAVING TO GO THROUGH LIFE LIKE I HAVE, WHEN IT COULD HAVE BEEN AVOIDED, SAFELY AND EFFECTIVELY BY TREATMENT WITH ADHD MEDICATION …[/quote]
Thank you for your time, and please feel free to contact me for more information, if you so require, I will gladly extend my hand in friendship and help you, help yourself and your family in coping with the massive pressure of living with ADHD in your family…
/Peter
Peter ‘ADDspeaker’ Vang
Founder, blogger and caregiver @ADDspeaker or ADDspeaker.net
PLEASE NOTE: ADDspeaker is a non-profit, self sustained, non-political, non-religious, and completely detached from any financial interests, community of people that all understand, live with and educate about, ADHD based on solid scientific, peer-reviewed and published, evidence-based and personally experienced, profound understanding of what ADHD really is and what living with ADHD really means, regardless of whether your are the one suffering from ADHD or if it is someone you care for.
Our values are simple:
Insight, Understanding, Recognition, Respect … and Caring …
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Now I also want you to understand, that the ADHD drugs do not regulate the emotional aspect of ADHD, identically, they all do it effectively, but they do it through different pathways, and this can help you understand the drug responses, that your patients, your clients, may be having.
For instance, let’s take the stimulants. The stimulants work I n controlling emotion, by suppressing the Limbic System, the higher the dose you give, the less activity you’ll get, in that system. OK, that’s certainly one way to skin a cat, isn’t it? I can control your affect, by eliminating your affect! But remember that The Limbic System was not impaired in ADHD, it is not part of the ADHD neuroanatomy. But one way to control emotion, is to prevent it from occurring to begin with, and that is what the stimulants do.
Now you know why 1 in 5 patients complains to you of emotional blunting. That the patient becomes almost an automaton, they begin to loose their affect, yes they are compliant, yes they are productive, yes they are obedient, but that is all they are! Parents, in particular, are very worried about this side effect and often stop their stimulant medication, cause they don’t like what this child have become. They don’t see the Jour de Vie, the affection, we want this kid to be poking his sister, once in a while, to become a little upset. I don’t need a robot that sits at a computer and some of the kids can get that way. So we have to be careful with stimulants, because if you push the dosage too high, you can get blunting of normal emotions, which isn’t they goal after all, is it?
Now, let’s take the non-stimulants, Atomoxetine for instance, the norepinephrine re-uptake inhibitor, that’s Strattera, what does that do? It has no effect on The Limbic System, whatsoever, but it activates the Anterior Cingulate and the Frontal Lobe, it activates the Executive, that is managing the emotion. So what would I predict from that? That Atomoxetine will be better at regulating the emotions symptoms of ADHD, than the stimulants will be, because it is doing it at the site, where the problem is at the site of the Executive System that isn’t down regulating the affect, as it should. You will also find that Atomoxetine do not produce the side effect of emotional blunting, there has never been any complaints to that in the literature, to my knowledge.
Now you know why we are seeing Clinicians in this country, combining these medications, and they are doing it to get greater coverage across this range of ADHD symptoms! The stimulants are really good at improving your attention and Executive System, your Cold Cognition, your working memory, they are no necessarily so good at regulating the emotional dysregulation, but by adding in a non-stimulant, you are able to keep both drugs at lower dosage, which is always a good thing, and get greater coverage across the ADHD symptom complex, including emotional dysregulation.
Now what about the third drug that is on the market, that came a few years ago, Intuniv. Intuniv is Guanfacine XR – Extended Release, Guanfacine has been around for years, as a hypertension drug, used to treat high blood pressure. But it has also been know to have psychiatric, pharmacologic properties, and it is beneficial to people with ADHD and Tourette’s Syndrome. So Shire simply took it and reformulated it, so that the drug lasts longer.
Now what does Guanfacine do? Guanfacine is an alpha2 regulator, it goes to the frontal lobe, and it fine tune the signals in the nerve cells. So unlike stimulants, which affects the expression of Dopamine and Norepinephrine, but mainly Dopamine, and they do it usually through increasing production and blocking re-uptake, Guanfacine has its effect by latching on to a nerve fibre and opening or closing the little ports along the nerve cell, the alpha2 ports, And if you close the alpha2 port, the signal is stronger down the nerve cell. And if you open the little alpha2 ports, the signal gets dampened and noise comes into the signal. What Guanfacine do, is fine tune frontal nerve cells, so that signals are stronger, less confounded by noise, more likely to reach their end point and have an effect. So this would argue, that like Atomoxetine, Guanfacine might well be activating the Executive System, so that the signals from the Executive System, are cleaner, purer, stronger.
Here again you might use Guanfacine like you use Atomoxetine, to address the emotional component of ADHD, where stimulants might not be so good at doing that, and what are we seeing in the US today? Clinicians combining Intuniv with a stimulant, to do just that, lower dosage, much more pervasive coverage of ADHD symptoms.
So by understanding how the drugs work in the brain, we have a better understanding of how they manage the emotional aspect of ADHD. 70% of the brain areas that are activated by ADHD drugs are shared, so they have a lot in common, which is why they are called ADHD drugs, but 30% of the effect of a drug, are not shared with the other drugs, and it tends to be mainly in these emotion regulation centres that we see this non-overlap of drug response.
Transcribed by Peter ‘ADDspeaker’ Vang, May 1, 2018.
For more information on ADHD, visit ADDspeaker.net
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