18 Huge Reasons Why ADHD is Not So Divergent

Popular and longstanding statistics regarding diagnosed ADHD (Attention Deficit Hyperactivity Disorder) estimate that 5% to 9% of children, and 3% to 5% of adults live with the condition. These figures are often bandied about as if they are cast in stone, and not simply an imperfect snapshot based on numbers diagnosed at one moment in recent history.

The count only starts in 1987

The DSM-3 (Diagnostic and Statistical Manual of Mental Disorders version 3, published by the American Psychiatric Association) described ADHD for the first time in 1987, even listing adult ADHD, which was first observed as a unique and curious case just 11 years prior, as an entirely separate condition. In other words, just 36 years ago a conference of experts could agree that adult and child ADHD presented similarly (mostly in males, but similarly), but they weren’t at all sure that one had anything to do with the other. In short, in 1987 the general expectation was that every child with ADHD would grow out of it at puberty, with a strong inference that any adult with ADHD would suffer from that as an unusual coexisting condition, being already in receipt of psychiatric help for other more obvious or aggressive reasons.

This version of the DSM also replaced the first and only listing of ADD (now defunct), from DSM-2, 1980.

News travels slowly and sometimes not at all

While new diagnostic criteria may be of immediate importance to practicing psychiatrists, that is not always the case for frontline healthcare providers. Medical staff attending a wide variety of human ills daily, would have to first come across the concept and then take time to do their own research. It is quite understandable that it took at least until the mid-1990s for most family doctors to catch up, and this is reflected in the first major increase in numbers diagnosed, at that time.

We still see educators and others with the power to gatekeep mental health resources assuming that ADD is a separate condition still in existence. Sadly in 2023 the British Medical Journal (BMJ) still gives weight to the 1987 concept that adult and child ADHD may be separate conditions, even though they quote the DSM-5 as a guideline, when that clearly states that the two are one and the same, with no adult ADHD except where symptoms are present before the age of 12.

If you’ve heard any recent suggestions of diagnosis bandwagoning, of ADHD becoming a fashion and a fad, then you’ve probably only heard that since the pandemic (a time when we were mostly stuck indoors getting introspective, scrolling online and actually noticing things about ourselves). So many more people are coming forward to request assessment, that even if the current CDC and NICE statistics weren’t already full of loopholes, they would still have been superseded in recent years.

Statistics in the US

In the US where a diagnosis is more readily considered, CDC stats relating to the period 2016 to 2019 point to 9.8% of under-18-year-olds being diagnosed, in approximately equal numbers before and after the age of 11. This further breaks down to between 12% and 8% by race, unless of Asian descent in which case only 3% were reported. These figures were collected through parent surveys only and can be fairly assumed to be under-reported due to:

• perceived social stigma at seeking a diagnosis,
• perceived social stigma at publicising a diagnosis,
• limitations in survey reach and awareness,
• parental apathy to do with more form-filling, and
• undiagnosed ADHD ‘procrastination’ and disorganisation in parents themselves.

This figure of 9.8% very likely represents substantially limited reporting of proper psychiatric diagnosis, compared to the actual numbers. There is no data to indicate the likelihood that parents who reported no diagnosis were ever recommended to seek one, or would ever have sought one out in the first place. Nor is there any light cast on how likely or unlikely it would be for family doctors to agree to make a referral dependant on their personal opinion of the child’s character and future, rather than falling back on ignorance and cognitive bias, coming up with gems that still surface today, such as “You can’t be ADHD, you’re too intelligent”. The processes, and the statistics, also vary wildly between US states.

Statistics in the UK

NICE (National Institute for Health and Care Excellence) and the BMJ (British Medical Journal) both made assertions dated 2023 that differ to some degree with the US observations. Whilst nominally acknowledging the US figures for childhood occurrence even while contrasting them against worldwide figures cited in The Lancet six years ago (February 2018), in the same August 2023 article NICE posted the mindboggling assessments that:

“In the UK, the prevalence of ADHD in adults is estimated at 3% to 4%, with a male-to-female ratio of approximately 3:1.

ADHD is associated with poverty, lower family income and social class. In adults, it is more frequent in the unemployed and in people with disabilities.“

Not ADHD diagnosis, but ADHD. Entire. However, these figures, solidly reviewed every five years with minor updates in between, still rely on the most up to date external sources that fulfil the required criteria. Those sources may themselves go without any update or review for years at a time.

Linking the childhood occurrence of ADHD to poverty, rather than making it a connection between poverty and the subsequent need for help to manage the ADHD, or even the concept that parental ADHD may have contributed to the poverty in the first place, is bias in the extreme. It has to be assumed that the source materials failed to put those controls in place, or to list them as possibilities at all. In other words, even though ADHD is now recognised as hereditable, NICE is still obliged to rely on findings that totally overlook the gap between prevalence and diagnosis, or the possibility that the condition may be a cause of socioeconomic difficulties rather than a symptom.

What is this source that still informs the central source of clinical guidelines relied upon in making treatment funding decisions in the UK? A paper published in 2015 relating to statistics gathered between 2004 to 2013! This clearly means that the data, as well as any inherent unconscious bias is at very least a decade out of date (Title: ADHD in the United Kingdom: Regional and Socioeconomic Variations in Incidence Rates Amongst Children and Adolescents (2004-2013)).

Separate conditions

As to the ridiculously low figures for adult ADHD – note the word ‘estimated’. Those figures are taken from a much more up-to-date 2023 publication in the British Medical Journal, which as a free access summary offers no reference link to proof for those figures at all, and even says in the same first paragraph that adult ADHD is only “thought to be persistence of childhood ADHD”. Even the BMJ doesn’t seem to know at this point whether we can develop ADHD for the first time later in life, or lose it and catch it again, or wrap it up with paper and string and win it in pass the parcel, and they publish this uncertainty to their 6.2 million subscribers who work in hospitals, healthcare organisations, and governments.

In any case mercifully the DSM-5 diagnostic criteria in current use are of course in total contrast to that woolly, non-committal bet-hedging sentence on the BMJ website. Rigorous and evidence-based. Check. Maybe a person needs to be worthy of a site membership to get to something that makes more sense.

Social class and the perils of lacking a diagnosis

For the record I feel that wealthier ADHD sufferers may eventually be at a major disadvantage for missing out on diagnosis, as it leaves them to sort out their own (potential) forgetfulness, academic failure, apparent disrespect (failure to get out on time etc), feelings of letting people down, tendency to party hard, inability to stick to a job, or a relationship, or a passion or hobby, not forgetting desperate shortage of dopamine, all with the financial ability to indulge in some seriously damaging coping strategies, distractions and addictions.

All 18 very good reasons why there has to be more ADHD out there than anyone guessed.

Here, then, besides the above outdated statistics, are the other seventeen reasons why current childhood diagnosis is almost certainly only catching the tip of the iceberg for real numbers, and why I’m sure ADHD as a depleting struggle with eventual repercussions for health, rather than simply an annoyance to society, doesn’t go away at puberty and is just as prevalent in all walks of the adult population.

1. Old data
   • The data for funding purposes is a decade out of date and reliant on diagnosis not presentation, above.
2. A modern diagnosis
   • Less than forty years ago in 1987, ADHD and ‘Aspergers’ (Aspergers not yet in the DSM until 1994) were the subject of a UK daytime chat show presented by Robert Kilroy-Silk. These conditions were new to public awareness, they were American. Was it real? Was it a fad? Was it all down to E numbers in the orange squash? How could you tell the two conditions apart? Were they really the same thing? Enough confusion and argument over those concepts to share a microphone around an audience and invited guest experts for a solid half hour. The path to diagnosis was chock-a-block with misconceptions that would last for years.
3. Blaming chemicals in food
   • For a further decade, educated general practitioners prescribed or suggested sugar-free or E-free diets and more physical and mental exercise. They blamed society that impoverished single mothers couldn’t feed their children higher quality foods, couldn’t afford schools with small class numbers or nannies to mind the other children, to give the ‘intelligent’ (ADHD) one constant and consistent mental stimulation, which in their opinion was the only treatment required. These biases continue today and many proud parents are eager to collude.
4. Homeschooling
   • Homeschooling is a preferred course of action (second to going private) particularly for middle-class families, if a child struggles with being overwhelmed in mainstream education. This leads to parents actively working against the path toward SEN provision and diagnosis.
5. Blaming helicopter parents
   • Parents with a difficult child in a mainstream setting can easily be written off as helicopter parents and the cause of the issues, particularly where the parent alone sees the child’s distress, which may be masked with acting out or opting out, at school. This leads both to blocks to clear communication and to delays in considering other reasons.
6. Blaming bad parenting
   • Parents with a difficult child who do seek school-based help can be guided (effectively obliged) to suffer the indignity of parenting classes, before schools will consider that they may not be the sole cause of behavioural issues through ineffective parenting. This is in part due to lack of training and until recently there was no mandatory SEN (Special Educational Needs) training for classroom teachers.
7. Misplaced parental faith in the system
   • Parents without other children to externally present as well-balanced and helpful (more likely necessarily sidelined as siblings and starting to become people pleasers) can become convinced that they do bear the shame as suggested, and cease to reach for assistance.
8. Possible ostracism
   • Diagnosis still carries a perceived stigma and level of social ostracism at school level, as one of the segregated ‘bad kids’ or special needs kids’, a cruel distinction verbalised by teachers and other school staff as well as by pupils.
9. Possible career damage
   • Diagnosis carries perceived stigma moving forward concerning career prospects and very real worries over whether or not to disclose.
10. Other misconceptions
    • Diagnosis can carry an expectation of lifelong, often expensive medication and/or therapy.
11. Overwhelm and shame
    • Delayed diagnosis combined with lack of support leads to continuing loss of self-confidence and self-acceptance, and can make the added shame and stigma of requesting the first steps to diagnosis too much to risk.
12. Dismissed as an issue for poor people
    • Society at large tends to recognise poverty and socioeconomic factors as contributing to the likelihood of developing ADHD, rather than exacerbating symptoms of already having ADHD, or providing a backdrop to highlight the stresses of living with ADHD. We seem to completely overlook poverty as resulting in a lack of available resources: emotional support systems, practical coping strategies and enthusiastic athletic and intellectual outlets for multiple interests, essential for the hyperactive mind.
13. Educational structure and limitations
    • There are no statistics to show whether attending a state-funded school vs classical education, with maximum class sizes, maximum government oversight and minimum educational resources and curriculum options, is a contributing factor to a pupil’s inability to thrive, or effectively mask, or receive sufficient attention, or fulfil their potential, without a diagnosis
14. Overlooking heredity
    • Heredity is acknowledged and yet simultaneously swept under the carpet, and young families are still taking their school-age children for assessment without automatically being offered testing for themselves and the rest of their immediate family, which would maximise support for the whole family system and therefore also for the child.
15. Uninformed family doctors
    • Many General Practitioners who gatekeep access to oversubscribed psychiatric pathways still wrongly categorise:
      • ADD as different from ADHD and much less of a disability
      • ADHD as a masculine trait defined by the original observed behaviours in young males (1902)
      • ADHD as a cluster of symptoms recognised by the difficulty caused to others or to an externally enforced system, not the difficulties experienced by the individual in struggling to fit in, and
      • Diagnosis as being only of value or importance to individuals about to face higher education.
16. Symptoms masked by comorbidities
    • (Comorbidities = other presenting medical conditions that often overlap). Women with ADHD at any age are more likely to be misdiagnosed as anxious, depressed, or bipolar due to archaic assessment criteria, comorbidities that stack up over time, and lack of awareness of different ADHD presentations and the depleting side effects of living without a diagnosis or support.
17. Whole generations have been missed out.
    • Adult ADHD was not recognised in the DSM as a continuation of the childhood condition until 1994, DSM-4. Nobody seems to be looking at the older generations in their forties and up at all unless those individuals stand up and ask for attention on their own behalf. This is happening more and more but still involves a battle between their recent understanding of what others consider normal and what is, or might have been possible in their lives with the right support, against already lifelong self-doubt.
18. Lack of psychiatric appointments and funding
    • Waiting lists of 12 months or more (5 years in some areas) are biasing GPs to refer only those they consider at most urgent need (young, heading to university, etc) ahead of other patients. Whether assessment is delayed or denied altogether because of this shortage, this continues to skew the statistics in favour of archaic data.

Conclusion

The statistics acknowledged by NICE and quoted in 2022 by the CDC, America’s Centers for Disease Control and Prevention, set diagnosed numbers for all ages as 12.9% of men and boys vs 5.6% of women and girls. They, like the BMJ, at least have the decency to stress that these are numbers of diagnosed individuals, and not anything to do with total numbers living with the condition.

A cautious but realistic estimate is far more likely to be 18% – 20% of the population across the board, regardless of age, sex, gender, mental health, IQ, coping strategies or social strata.

Final thought

We seem to be stuck in a vicious cycle where lack of funding and resources for diagnostic pathways is due to the lack of realistic official statistics. Collected data on past diagnoses is erroneously accepted as predicted numbers of actual cases, creating a system that fails to access the real wealth of untapped potential in our adventurous and creative lightning minds and at the same time fails a considerable proportion of the population.