ADD is widely known as the type of ADHD were you don’t bounce off the walls, some call it The Quiet ADHD. But what people don’t realise, is that ADD does not exist … anymore … We explain why!
OK, standards are great, double standards are even better, right? ADDspeaker is my name and I’m 47 now, but when I was diagnosed, I was just 40 and back then ADD actually existed, so I got the diagnosis ADD at UCLA.
But then in 2013, DSM-5 came along and messed that up for me, totally. So now I’ve got a name that’s still cool, but completely annoying. I’ll admit that I’m a stickler about facts, I admit that, and since I’m diagnosed with Autism as well, and honestly, it really pisses me off that DSM have changed the name of my diagnosis, ’cause now my name is just … wrong … sigh!
So in order for me to regain just a small amount of street-cred back, I’ve decided to clear this all up, once and for all.
What the science says …
ICD-11, which came in June of 2018 and is to be implemented on Jan 1st., 2020 is the latest and in my mind, most accurate definition of what ADHD is, do and causes, for those of us who live with it, everyday.
Let’s define what ADHD really is
Attention deficit hyperactivity disorder is characterized by a persistent pattern (at least 6 months) of inattention and/or hyperactivity-impulsivity, with onset during the developmental period, typically early to mid-childhood.
The degree of inattention and hyperactivity-impulsivity is outside the limits of normal variation expected for age and level of intellectual functioning and significantly interferes with academic, occupational, or social functioning.
Inattention refers to significant difficulty in sustaining attention to tasks that do not provide a high level of stimulation or frequent rewards, distractibility and problems with organization.
Hyperactivity refers to excessive motor activity and difficulties with remaining still, most evident in structured situations that require behavioural self-control.
Impulsivity is a tendency to act in response to immediate stimuli, without deliberation or consideration of the risks and consequences.
The relative balance and the specific manifestations of inattentive and hyperactive-impulsive characteristics varies across individuals, and may change over the course of development. In order for a diagnosis of disorder the behaviour pattern must be clearly observable in more than one setting.
ICD-11 aligns with DSM-5 and CRPD
These criteria must be met, to obtain a diagnosis of ADHD today. ICD-11 have in many ways been aligned with both DSM-5, but more importantly, in my opinion, also with the Convention on the Rights of Persons with Disabilities (CRPD) which has recognised that ADHD causes a severe impairment in functioning and therefore ADHD is now recognised by the UN, EU and WHO as a disorder which qualifies for disability support in line with any other physical or mental impairment in normal functioning.
What’s the difference?
The main differences in the diagnostic criteria from ADHD/ADD in DSM-IV/5, is that the ICD-11 have removed the specific age requirements, it simply states that onset must be (or have been) visible during the developmental period. ICD-11 has also parted ways with the mild, moderate and severe degrees of perceived impairments have removed the severity levels of ADHD and that the reduction in functioning must be outside what is considered within the normative scope of functioning. It also states that the impairment is required to be “clearly observable“in more than one setting, meaning that it must be observable both at home and another setting, e.g. school, sports etc. ICD-11 have recognised that there is only one type of ADHD, but it has also realised that the 3 presentations which was introduced in DSM-5, is actually very useful, when trying to figure out what treatment will best suit the symptoms complex that each individual presents.
Is it Nature or Nurture?
The debate on whether ADHD is caused by ‘Nature’ or ‘Nurture’ have been going on for decades with proponents of each conviction stubbornly holding on to either or.
But as recent advances in genetic research have now found that a genome-wide association meta-analysis of 20,183 individuals diagnosed with ADHD and 35,191 controls that identifies variants surpassing genome-wide significance in 12 independent loci, finding important new information about the underlying biology of ADHD. (Demontis et al., 2019) the debate is over, once and for all. It’s NATURE …
As stated in the quote from a brand-new published study in systems approach to understanding ADHD, A network analysis approach to ADHD symptoms: More than the sum of its parts (SILK ET AL. 2019) clearly illustrates how many variations of symptom configurations (also called the Phenotype) is possible to create, based on the core symptomalogy of ADHD (also called the Genotype).
Genotype versus phenotype
An organism’s genotype is the set of genes that it carries. An organism’s phenotype is all of its observable characteristics — which are influenced both by its genotype and by the environment. … For example, differences in the genotypes can produce different phenotypes. (Understanding Evolution, Berkeley)
Epigenetics is defined as the study of heritable changes of DNA, not involving changes in a DNA sequence, that regulate gene expression (Dunn et al., 2003; Jain, 2003) (Molecular Diagnostics, 2010).
THERE CAN BE ONLY ONE … ADHD
These findings are the reason why specific criteria should not be required to meet the diagnostic threshold, since the statement quoted below, holds just as true as in ADHD, as it does in people with Autism.
Presentation is a new word for a group of clearly observable symptoms, but where the focus have been put on which symptoms seems to be the most predominant, is it the Inattention, the Hyperactivity–Impulsivity, or is it them all?. This is the reason for the presentations defined below;
Predominantly inattentive presentation (ADHD-PI)
Predominantly hyperactive-impulsive presentation (ADHD-PHI)
Combined presentation (ADHD-C)
ADHD-PI (41.8% prevalence)
All definitional requirements for attention deficit hyperactivity disorder are met and inattentive symptoms are predominant in the clinical presentation. Inattention refers to significant difficulty in sustaining attention to tasks that do not provide a high level of stimulation or frequent rewards, distractibility and problems with organization. Some hyperactive-impulsive symptoms may also be present, but these are not clinically significant in relation to the inattentive symptoms.
ADHD-PHI (10.3% Prevalence)
All definitional requirements for attention deficit hyperactivity disorder are met and hyperactive-impulsive symptoms are predominant in the clinical presentation. Hyperactivity refers to excessive motor activity and difficulties with remaining still, most evident in structured situations that require behavioural self-control. Impulsivity is a tendency to act in response to immediate stimuli, without deliberation or consideration of the risks and consequences. Some inattentive symptoms may also be present, but these are not clinically significant in relation to the hyperactive-impulsive symptoms.
ADHD-C (47.9% Prevalence)
All definitional requirements for attention deficit hyperactivity disorder are met. Both inattentive and hyperactive-impulsive symptoms are clinically significant, with neither predominating in the clinical presentation. Inattention refers to significant difficulty in sustaining attention to tasks that do not provide a high level of stimulation or frequent rewards, distractibility and problems with organization. Hyperactivity refers to excessive motor activity and difficulties with remaining still, most evident in structured situations that require behavioural self-control. Impulsivity is a tendency to act in response to immediate stimuli, without deliberation or consideration of the risks and consequences.
What ADDspeaker says …
I wrote an article on a new updated EU Consensus Statement on Adult ADHD the other day, and in that article, I highlighted some of the latest scientific evidence on how ADHD changes and impacts you, across the entire lifespan.
Does it even matter what we call it?
Well, in principal, not at all. But in societal terms it matters … a lot!
Being an person with Adult ADHD myself, I know from my own personal experience, how difficult it is to get people around you (family, society, media, social services, mental health services etc.) to understand and accept, than even though I do not present to be impaired, in general terms in the public understanding of disabilities, I nonetheless experience massive impairments in my daily life.
If you could be a fly on the wall, you would be shocked to se how much damage the lack of age-appropriate; verbal and non-verbal inhibition, (emotional) self-control, (emotional) self-regulation, foresight, hindsight, prediction of consequences, and planning, organising, executing and timing task activities, which for any other 47-year old Mae would be second nature.
So yes, it is very important what we call it! If we do not explain things using the same words, we open up to interpretation of the term ADHD.
This is why critics like Scientology and the Big Pharma Conspiracy Theorists have had such succes in muddying the waters, since the throw a monkey wrench into the debate, constantly, which confuses parents and lead them astray in their understanding of what ADHD it, and most importantly, is not!
When we begin to add emotions, beliefs and agendas to the debate on ADHD and it’s impact on life quality, then we do ourselves a massive disservice, since now ‘nothing is fact, everything is debatable’ and this is what causes the massive discrimination, stigmatisation and societal distancing, that is reality, all over the world today.
Therefore I urge you, bury the old terms, and embrace the new ADHD-PI, ADHD-PHI and ADHD-C, so we can get back on track and together help correct the negative societal narrative on ADHD!
So what is Science doing about it?
Focus in research on Adult ADHD is taking off at the moment, and numerous new publications highlights the significance of getting the right diagnosis and the empirical scientific and evidence-based combined treatment of medicine and psychosocial support, as early as possible and for a continued treatment from early childhood and well into the late 20’s or early 30’s.
This is due to the risk of comorbidity such as addiction, anxiety, depression and somatic disorders as well. Also it is a well established fact, that untreated ADHD leads to ODD in 60-80% of all cases of childhood ADHD, especially if parent themselves suffer from an untreated mood disorder or … untreated ADHD themselves.
ADHD reduces Estimated Life Expectancy (ELE)
A milestone paper was published on the results of a long-term study of ADHD across a 27 year period (from childhood to adulthood) which stated that Childhood ADHD-C was associated with a 9.5-year reduction in healthy ELE, and a 8.4-year reduction in total ELE relative to control children by adulthood. The persistence of ADHD to adulthood was linked to a 12.7-year reduction in ELE (Barkley et al., 2018).
ADHD is linked to massive risk of somatic diseases
As can be observed in this excellent paper from Instanes, the link to somatic diseases and disorders are massive, all of which will only be more likely to activate in the DNA, if the body us stressed out, due to untreated (Adult) ADHD. Converging evidence from epidemiological and clinical studies suggests that individuals with Adult ADHD have an increased risk of several somatic diseases compared to people without ADHD. Many studies have described an increased risk of diseases of the nervous system in Adult ADHD, including epilepsy, migraine, sleep disorders and restless legs syndrome. Fewer studies have found evidence for increased risk immune-mediated conditions, including systemic lupus erythematosus, coeliac disease, atopic dermatitis and asthma in Adult ADHD. Some evidence has been presented for co-occurring Adult ADHD and fibromyalgia. People with Adult ADHD are also more prone to traumatic injuries, traffic accidents being the most studied. Many rare congenital syndromes/malformations, including Klinefelter syndrome, tuberous sclerosis and Fragile X syndrome are reported to increase the risk of ADHD. However, for these conditions the ADHD symptoms may also be considered part of the syndrome itself and not a proper comorbid disorder (Instanes et al., 2015)
Medication reduces injuries in childhood
This supports the groundbreaking findings by Dalsgaard et al. which showed that children with ADHD had an increased risk of injuries compared with other children. Treatment with ADHD drugs reduced the risk of injuries by up to 43% and emergency ward visits by up to 45% in children with ADHD. Taken together with previous findings of accidents being the most common cause of death in individuals with ADHD, these results are of major public health importance. (Dalsgaard et al., 2015).
Medication improves academic performance
A study on school performance showed that medical treatment affects school-leaving GPA of individuals diagnosed with ADHD, treatment likely influences subsequent educational and vocational tracks as well; for example choice of post-secondary tracks, dropout rates, unemployment propensity, adult profession, and adult income as these are all strongly correlated with school-leaving GPA. International studies have also found evidence ofsuch effects from ADHD diagnosis (Keilow et al., 2018).
Silk, T. J., Malpas, C. B., Beare, R., Efron, D., Anderson, V., Hazell, P., … Sciberras, E. (2019). A network analysis approach to ADHD symptoms: More than the sum of its parts. https://doi.org/10.1371/journal.pone.0211053
Demontis, D., Walters, R. K., Martin, J., Mattheisen, M., Als, T. D., Agerbo, E., … Neale, B. M. (2019). Discovery of the first genome-wide significant risk loci for attention deficit/hyperactivity disorder. Nature Genetics, 51(1), 63–75. https://doi.org/10.1038/s41588-018-0269-7
Instanes J. (2015). Adult ADHD and comorbid somatic disease. A literature review. ADHD Attention Deficit and Hyperactivity Disorders. https://doi.org/http://dx.doi.org/10.1007/s12402-015-0169-y
Keilow, M., Holm, A., & Fallesen, P. (2018). Medical treatment of Attention Deficit/Hyperactivity Disorder (ADHD) and children’s academic performance. PLOS ONE. https://doi.org/10.1371/journal.pone.0207905
Barkley, R. A., & Fischer, M. (2018). Hyperactive Child Syndrome and Estimated Life Expectancy at Young Adult Follow-Up: The Role of ADHD Persistence and Other Potential Predictors. Journal of Attention Disorders, 108705471881616. https://doi.org/10.1177/1087054718816164
Dalsgaard, S., Leckman, J. F., Mortensen, P. B., Nielsen, H. S., & Simonsen, M. (2015). Effect of drugs on the risk of injuries in children with attention deficit hyperactivity disorder: a prospective cohort study. The Lancet Psychiatry, 2(8), 702–709. https://doi.org/10.1016/S2215-0366(15)00271-0