In June, 2018, WHO announced it’s new ICD-11, and with this ADHD got a facelift and was aligned with the descriptions as found in DSM-V, but with som key differences. This article describes the new ICD-11 criteria for ADHD.
ADHD according to ICD-11
Since ICD-10 was released in 1993, many have requested that the diagnostic requirements for an ADHD diagnosis, could be updated to reflect what science have learned, since then. In the EU, ICD-10 have been at the core of all health related services since 1993, and especially for those of us with ADHD, it have been an uphill battle for seeking recognition within our societies in general and it our social benefits services, in particular.
United Nations released “Convention on the Rights of Persons with Disabilities (CRPD)” in 1992, and within this convention, the rights of people with disabilities was described in detail, and it set the new standard for how we regard and describe, what a disability is, and what it takes to qualify for these extended human rights that followed. The key point in the CRPD is that a disability is NOT something that the person with the disability IS, but instead describes what being disabled means, in a contextual, social sense, namely that being disabled is NOT related to any physical or mental impairment, but is the result of HAVING an impairment, in one’s meeting with the norms and demands, of one’s society.
You cannot BE disabled, you can only HAVE an impairment, and that is defined with the impairments you EXPERIENCE in your meeting with societal norms and demands. It is not what your diagnosis says your impairments are, that is key here, it is the disadvantage or disability, that you experience when faced with the norms and demands of society, compared to all other people in your society. that you do not meet!
This definition has been incorporated into the global framework for understanding and supporting people with disabilities, and here in the EU, it has been a fundamental judicial principle and have been incorporated into social benefit services, so that you receive benefits based on your impairment, when facing the norms and demands of society, and not on your physical or mental diagnosis criteria.
The discrepancy between WHO’s ICD-10 and the CRPD have let to many challenges when trying to figure out which benefits you could get, since ICD-10 looked solely at the symptoms of your disorder, not on its societal and personal implications. This have been corrected in ICD-11, and now CRPD, DSM-V and ICD-11 have been aligned, for the benefit of all, those who have the disorder and the people managing the benefit services, alike.
From a personal perspective, I for one is very satisfied that this have been done, since I have an ADHD diagnosis myself and therefore I belong to the category of people who can apply for social benefits from the Nation State (in my case Denmark), and it have been a bureaucratic nightmare to get the benefits approved, that my disorder entitles me to receive, since the rules for approving those benefits was based on my impairment, not my diagnosis, and therefore the social benefit services in my country, have used this incoherence between ICD-10 and CRPD to refuse me the benefits I am entitled to, according to the CRPD, using the definition in the CRPD as the standard I had to meet to be accepted as having a disability that is covered by social benefit services, because my diagnosis according to ICD-10, did not specify my impairment, only my diagnostic criteria for meeting the requirements of having ADHD.
With the new definitions in ICD-11, my ADHD diagnosis will automatically be aligned with CRPD, and thus my social benefit services will no longer be able to refuse me the benefits that I have always been entitled to, but which they refused to give me, based on ICD-10. So I am one happy camper now!
So what’s new?
Basically ICD-11 have copy/pasted the definitions of ADHD from DSM-V as far as the requirements for being diagnosed with ADHD, but with one major difference being, that ICD-11 is much broader defined than DSM-V, e.g. the age requirements for the onset of the disorder have been defined as “early to mid-childhood” in ICD-11 and is required to be “symptoms were present before age 12 years.” in DSM-V. So basically, ICD-11 have departed from having any exact age at which your symptoms must have presented themselves, and is taking a more holistic view on ADHD, as understood in terms of being a developmental disorder, focusing on the impairment in functioning, not on whether you meet certain stringent criteria, as is seen in DSM-V.
Another key point is that ADHD is now divided into 5 categories; ADHD-PI, ADHD-PHI, ADHD-C, ADHD-Y and ADHD-Z, as I will describe in this article.
These categories are distinctly different and is in accordance with what science says today, in regards to the different types of ADHD symptoms and their subsequent impairments.
So in short, you no longer have to meet a fixed set of age related symptoms to be diagnosed with ADHD, you only have to have impairments in functioning as they are related to your ability (or disability) to meet societal norms and demands.
What are the new categories of ADHD in ICD-11?
Let’s take a look under the hood of ICD-11 and get acquainted with the new Presentations (types) as they are called now.
6A05 Attention deficit hyperactivity disorder
This is the main definition of ADHD, and is the basis for all other types. You have to meet these requirements to be diagnosed, regardless of which type of ADHD you suffer from.
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.
6A05.0 Attention deficit hyperactivity disorder, predominantly inattentive presentation
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.
6A05.1 Attention deficit hyperactivity disorder, predominantly hyperactive-impulsive presentation
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.
6A05.2 Attention deficit hyperactivity disorder, combined presentation
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.
6A05.Y Attention deficit hyperactivity disorder, other specified presentation
This category is an ‘other specified’ residual category.
6A05.Z Attention deficit hyperactivity disorder, presentation unspecified
This category is an ‘unspecified’ residual category.
What does this all mean then?
ICD-11 will mean that your standing as a person with ADHD will improve on many fronts, mainly on your extended human rights as defined in the CRPD, but also that your disorder is no longer seen as a set of stringent requirements for symptoms of your disorder, but instead the focus will be on the impairments that you experience, when interacting with other people. In the future, you will no longer be seen as a person with a disability, but as a person that experience impairments in functioning in relation to societal norms and demands, or put this way;
It is not you that have a disability because you have ADHD, it is the result of having ADHD symptoms when interacting with society, that gives you these impairments in your experience of being a member of society, in alignment with all other people in society.
This means that it is not you who have to change your person to be accepted in and by society, instead it is the responsibility of society to include you in society and to reduce your impairments to give you equal opportunity to function in society, despite your impairments.
This will have far-reaching consequences in your experience of being a part of society, e.g. in the workplace, where you now have a legit reason to be given special consideration in your workplace environment, by the employer, so that you can become as productive and efficient, as all other employees. It will also mean that your impairments is not your responsibility to negate, it is the responsibility of society to negate that which gives you these impairments. The classic example would be in relation to people with a hearing disability, where it is a natural thing to have a person translating a spoken presentation into sign language, to enable equal opportunities for people with and without, a hearing disability.
What can you expect in the future?
I my personal view, ICD-11 will change how societies regard ADHD in the social context, as having ADHD is now a recognized mental disorder which gives the person with ADHD a legitimate claim for societal considerations and for society to be more forthcoming in its understanding of people with ADHD, as well as the benefits that your Nation State is required to extend you, so that you can function as close to what Neuro-Typicals (people without ADHD) experience, both in regards to work and education, social services, benefits and overall quality of life.
I, for one, is immensely pleased to see the final version of ICD-11 in regards to ADHD, both from a personal standpoint and a societal standpoint, as I believe that this new diagnosis will be the straw that broke the Camel’s back, and finally, 20 years later, be in accordance with the prevailing theory of ADHD, as described by Dr. Russell A. Barkley, Ph.D. in his book “ADHD and the Nature of Self-control” back in 1997, and which today is at the core of our understanding of ADHD, and which have been backed by an overwhelming majority of the 34.000+ published studies on ADHD, that you can find on PubMed.
So to close this out, I would like to give a shout-out to my friend and mentor, Dr. Russ Barkley, for being recognized for his work in ADHD for more than 40 years, as well as a warning to the National Health Services in Denmark, the National Medicines Agency in Denmark, and the National Social Benefits Services in Denmark … we are coming to get you, and you will no longer succeed in making, we who were born with a physical illness of genetic origins which gives us a mental disorder with major personal and social impairments, feel like second-hand citizens of society, held to special standards, deprived of basic human dignity and ridiculed by society as one big fake, a joke and a burden to society as a whole!
No longer will we stand idle by, as you deprive us of basic human rights and put us on endless and pointless, welfare services schemes, just to save money, as 90% of all adults with ADHD in Denmark are forced to survive on, set us to certain, distinct requirements for being recognized as people with a legit mental disorder, that you do not require of Neuro-Typicals!
It is, in its core, discrimination and a clear violation of both our Human Rights as described by the UN, and of every basic humanitarian principle known to Man, the way you have treated us for decades now!
No more, no way …