Neurodiversity 101: how do we ensure we can support people equitably with ADHD today and tomorrow?

Accuracy, Ambiguity, Accessibility, and Accountability in ADHD diagnosis

ADHD Awareness month brings attention to this complex neurodevelopmental disorder, it's crucial that we, including professionals diagnosing and supporting children and adults with ADHD critique our current approaches including the diagnostic criteria we rely on.

The DSM-5 serves as one of the central guides, but it’s also important to question its accuracy, clarity, and how accessible it is to diverse populations.While the DSM-5 is widely regarded as the “Bible” of psychiatry, its framework is not without flaws.

This post will explore key areas of accuracy, ambiguity, accessibility, and accountability in diagnosing ADHD and the implications for both children and adults.

Accuracy: are we consistent in how we apply it?

The DSM-5 defines ADHD through a list of behavioural symptoms, like inattention and hyperactivity, that must occur “often.” However, no precise thresholds are given to define what "often" means, leaving interpretation to clinicians, parents, and teachers.

Symptom presentation often changes over time (https://pmc.ncbi.nlm.nih.gov/articles/PMC7612406/)

In one study investigating associations between ADHD symptoms and impairment across three school-based population samples covering early childhood (age 4-6 years), middle childhood (age 8-12 years) and adolescence (approximately 14-18 years) (Zoromski et al., 2015 ) observed differences according to age whereby hyperactive-impulsive symptoms showed greater association with impairment in early childhood but inattentive symptoms were associated with greater impairment in middle childhood and adolescence.

Geographic disparities

Global rates of diagnosis of ADHD vary(Polanczyk G, et al. The worldwide prevalence of ADHD: a systematic review and metaregression analysis. Am J Psychiatry. 2007;164(6):942–948. doi: 10.1176/ajp.2007.164.6.94). One study from Denmark showed a large geographical variation of ADHD in the municipalities was observed despite tax-financed and free access to healthcare. A recent stud y mapped the differences across Europe also. A random component in being diagnosed with ADHD based on the patient’s geographical residence is concerning especially when health inequalities are lower in a country such as Norway. But it does seem there is a post-code lottery with some patients, being diagnosed with ADHD and receiving ADHD medication may ultimately come down to residing in one catchment area rather than another.

Key Question:

• From a health policy and planning perspective, variation is worrisome as it challenges the principle of equal healthcare regardless of geography. How can we ensure equitable provision across the UK for example?

Not all symptoms are equal

There are greater functional impacts and impairments with some compared to others. In the study above they also found that while some symptoms were associated with impairment across age groups (e.g.?does not seem to listen?and?avoids tasks), there was some variation with others predicting greater impairment at specific ages (e.g.?being on the go?in early childhood,?leaves seat?in middle childhood and?does not follow through?in adolescence). Thus, both the frequency and associated impairment of specific ADHD symptoms may vary across development.

A 2019 Danish study, found that ADHD diagnosed in children and adolescents ages 4 - 15 years was associated with a 1.6-fold increased risk of future criminal conviction. A recent Swedish study has shown individuals without ADHD, those with an ADHD diagnosis were roughly:

• Four times more likely to be convicted of a violent crime.
• Twice as likely to be convicted of a nonviolent crime.

An important finding of the study was that"suggest that ADHD medications can significantly reduce the risk of both violent and nonviolent criminal behavior in individuals with ADHD" This emphasises the need for early identification and appropriate support.

“An imbalance between rich and poor is the oldest and most fatal ailment of all republics.”

–Plutarch

Lack of clarity means subjective judgements are made

The lack of clarity in the descriptors can lead to subjective judgements, cultural biases, and diagnostic inconsistencies. There are no clear biological markers or mechanisms having been confirmed. This opens the door for over-diagnosis or misdiagnosis.

Key Questions:

• How can we better define symptom frequency in a way that reduces ambiguity and increases diagnostic accuracy?
• How do we ensure we measure impairment and impact?
• How do we reduce cultural and gender biases?
• Should we continue using behaviour-based descriptors without understanding underlying neurobiological mechanisms?

Ambiguity: A diagnostic grey area

The DSM-5’s criteria for ADHD diagnosis are ambiguous, particularly in terms of the frequency and context of behaviours like fidgeting or inattention.

For instance, terms such as "often" and "excessive" are highly subjective, making it unclear when a behaviour crosses the threshold into pathology. What do you consider is often? Is that once a day, twice a week, several times a day? Does it depend on the day you have had as well if a parent is rating it and when they rate it?

This ambiguity allows biases related to race, socioeconomic status, and culture to influence diagnosis.

Children from different backgrounds may be judged differently based on the cultural norms of behaviour and expectations in their environments. In one cultural setting we may see authoritative parenting much more common than permissive parenting for example.( https://pmc.ncbi.nlm.nih.gov/articles/PMC9438858/ )

Key Questions:

• How can clinicians address the ambiguity in DSM-5 criteria to ensure a fair, objective diagnosis especially if we only have time for a ‘snap-shot’ view?
• What can we do to mitigate cultural or socioeconomic biases that may influence ADHD diagnoses?

Accessibility: Reaching the under served ( this doesn't mean not ..deserved!)

The DSM-5 criteria for ADHD don't adequately account for accessibility issues, particularly in diverse populations, including non-English speakers or individuals with low literacy levels. Many people who may meet the criteria for ADHD might be overlooked because the system is not designed with inclusivity in mind. In both children and adults, we need to ensure that diagnostic tools and criteria are accessible, easy to understand, and sensitive to different cultural norms and socioeconomic conditions.

If you are not in school are you less likely to get referred for a diagnosis of ADHD or is it called something else? A 2006 survey by ADDISS found that 11% of children with ADHD were permanently excluded from their school, compared to a 0.1% permanent exclusion rate in the general population. Today it is hard to know the exact numbers but we know that pupils with special educational needs and disabilities (SEND) account for 47% of permanent exclusions and 43% of suspensions.

A large US study showed disparity across different socio-economic groups in terms of who gets a diagnsosis."Adults with the highest levels of education were twice as likely to be diagnosed as those with the lowest levels."

Key Questions:

• How can we ensure that our screening tools are accessible to individuals from different linguistic, cultural, and educational backgrounds?
• Are there ways to adapt the DSM-5 or complementary diagnostic methods to ensure we’re not missing ADHD in underserved populations?
• How do we ensure those who have a 'behaviour' diagnosis have their overall needs considered including ADHD, DLD, and TBI for example?
• How often do we consider the intersection between poverty, adversity and ADHD and other neurodevelopmental disorder despite the evidence of cumulative impact ?

Avoidance- gender biases

The DSM-5 criteria for ADHD were primarily developed based on studies and observations of males with ADHD. This male-centric approach means the criteria may not fully capture how ADHD manifests in females.

Greater emphasis on externalising symptoms: The diagnostic criteria place more emphasis on externalising, disruptive behaviours that are more commonly seen in males with ADHD, such as hyperactivity and impulsivity . Females tend to display more internalizing symptoms that may be overlooked.

Under-representation of inattentive symptoms: While inattentive symptoms are included, they may be underrepresented compared to hyperactive/impulsive symptoms. Females are more likely to have predominantly inattentive presentations of ADHD.

Age of onset criterion: The previous DSM-IV criterion requiring symptom onset before age 7 disproportionately excluded girls, who often show symptoms later. While DSM-5 increased this to age 12, it may still miss some females whose symptoms become apparent in adolescence.

Lack of gender-specific guidance: The DSM-5 provides limited guidance on potential gender differences in ADHD presentation, with only two sentences addressing sex and gender differences in the literature. This lack of nuance may contribute to clinicians missing ADHD in females.

Disregard for masking behaviours: The criteria do not account for masking or compensatory behaviours that females with ADHD often develop to hide their symptoms, which can lead to underdiagnosis.

Referral bias impact: If teachers are one of the main routes into diagnosis and they are more aware of ‘boy symptoms’? this may impact also on the referral biases (where boys are more likely to be referred for evaluation) impact diagnosis rates.

Key Questions:

• How can we addressing these biases in future revisions of the diagnostic criteria could help improve identification and diagnosis of ADHD in females?
• How do we increase the training of teachers to reduce the gender biases in referrals?

Accountability: Who’s responsible for misdiagnosis or misunderstanding?

Misdiagnosing or misunderstanding ADHD can have significant consequences, particularly in school-aged children who may struggle academically or socially. Over-reliance on the DSM-5 could lead to misdiagnosis, especially when clinicians lack comprehensive understanding of co-occurring conditions or the broader context of the child's life.

Moreover, the DSM-5 does not fully consider the psychosocial and environmental factors that can mimic ADHD symptoms e.g., ADHD v Traumatic Brain Injury (TBI). For example, both ADHD?and TBI can result in impairments in executive functioning, including difficulties?with attention, organization, and impulse control.

Both conditions can lead to behavioural problems such as irritability, low frustration tolerance, and aggressive or defiant behaviour. Individuals with pre-existing ADHD who sustain a TBI may have exacerbated symptoms, complicating the assessment of TBI's impact. Children with ADHD are nearly two times more likely to be injured compared to those without ADHD (pooled odds ratio of 1.96).

Key Questions:

• How do we ensure clinicians remain accountable for accurate and nuanced diagnoses, rather than relying solely on rigid criteria or overly simplistic checklists?

ADHD co-occurs often with other neurodevelopmental conditions

Autism Spectrum Disorder (ASD): 20-50% of children with ADHD meet criteria for ASD. and 30-80% of children with ASD meet criteria for ADHD. (https://pmc.ncbi.nlm.nih.gov/articles/PMC8918663/ )

Tic Disorders: The prevalence of ADHD in Tourette's Syndrome is around 55%.

DCD (also known as Dyspraxia):Approximately 50% of children diagnosed with ADHD meet the criteria for DCD.

Dyslexia: Between 18%?to 45% of people?with ADHD also?have dyslexia .

Key Question:

• What safeguards can be put in place to prevent misdiagnosis, especially in cases where ADHD symptoms overlap with other conditions?

?What do this all mean when designing clinical services for today?

ADHD clinicians must be aware of the limitations of the DSM-5 as a diagnostic tool or the use of checklists that only consider ADHD in isolation.

ADHD diagnosis should not be undertaken in isolation as this misses the other variables that may impact on differential diagnosis and intervention design.

As clinicians, we need to ensure that our diagnostic processes reflect the unique and diverse needs of the populations we serve. Additionally, diagnosis must include both behavioural and environmental factors into our evaluations.

The contemporary diagnosis of ADHD, while a valuable framework, requires scrutiny, and clinicians should remain proactive in refining their understanding of this disorder. We can see services are under huge pressure so the present-day model is not working.

A deeper reflection on accuracy, ambiguity, accessibility, and accountability in ADHD diagnosis along with other neuro-developmental conditions is urgently warranted.

By doing so we can help us all better serve all the children and adults who require support, ensuring that we capture not only a set of symptoms but know the whole person in our diagnostic processes and ensure those with the greatest needs and impact get the help they deserve and need.

HELP!

I am once again undertaking the 2025 City and Guild Neurodiversity Index Survey.This survey will help inform our 2025 Neurodiversity Report globally, bringing attention to neurodiversity in the workplace for individuals and organisations.

Can you take 10 minutes of your time?

Input is vital from employers, employees and organisations alike, and will make a lasting impact on shaping and championing the lived experience of neurodivergent employees to create a more inclusive workplace.

Please fill out the survey? ?? https://lnkd.in/egjee9GR

Can you also spread the word and tell 5 people to do so too!

Blog author

I am the CEO of Do-IT Solutions, a tech-for-good company, and a Professor in the field of Neurodiversity. Do-IT provides web-based tools to help understand neurodiverse spiky profiles and help with wellbeing as well as undertaking training and consultancy with organisations. I am also part of a very diverse family where many of us are anxious a lot of the time!

*All views are my own.