‘We can look to the AuDHD community to learn more about what the balance of autism and ADHD feels like’

We are in the middle of navigating a revolution in our understanding of autism and ADHD. Let's take a little look at history, so we can learn from the past and look forward. 

Thanks to changes made in the DSM-5, 2013 was the first time that clinicians were allowed to diagnose both autism and ADHD concurrently. Previous studies noted that 50 to 80 per cent of children recognised as autistic also met the criteria for ADHD (Frazier et al., 2001; Gadow et al., 2005), but this went unrecognised as the previous edition of the DSM, the DSM-IV-TR, did not allow an autistic child to be given a diagnosis for ADHD as well. We generally had to choose which one of the two neurotypes better explained a child's presentation, although there were some who recognised both. Many people were therefore missed, as well as many presentations were conflated with traits of the other neurotypes.

It's been ten years, but these old attitudes still stand. As assessors, we're still looking for one neurotype, but ignoring the fact that this could be a 'buy one, get seven free' scenario. It is tricky to pick up as our current tools are based on outdated understandings of what it means to be autistic, let alone how ADHD can disguise many autistic traits and vice versa. 

I'll use my own neurotype as an AuDHDer as an example of how I got missed.

ADHD says 'Be social. Go out, do all the things! We like new and novel experiences!'

Autism goes 'But this is exhausting'.

ADHD says 'Sorry, we're doing it! Staying at home is boring!'

Autism takes three days to recover from the social experience and sensory overwhelm.

If we're asking the question, 'Do you go out and have friends?', the answer would be yes, and the box doesn't get ticked and autism gets missed.

Say we asked different questions, the answers we would gather are very different.

'How often do you see your friends?'

'How energised do you feel after a social gathering?'

'What are your friends like – are any of them autistic?'

We know autistic people have autistic social skills, and the way we socialise is different. The Double Empathy problem as posited by Dr Damian Milton in 2012, and supported by Catherine Crompton and colleagues in 2020, showed us that autistic people communicate in perfectly acceptable autistic ways, and communication breakdown occurs when communication occurs cross-neurotype. (Crompton et al., 2020). Socialisation should not simply be a yes/no question, but an examination of quality and style.

We also have to take cultural attitudes and norms into account. I come from an interdependent culture, in which my social groupings were based on my family connections. We exist as a group, as a community. I belonged solely because I exist in my family or in a class, not necessarily because of any individual-like traits. It's why you usually see large groups of Chinese or Indian people going out together, rather than just with one or two people. Social relationships are constructed differently in my culture. So yes, I was social and went out with people. Yes, I had large groups to belong to. But no, I did not ever have a best friend.

It is our strict adherence to using tools and asking standardised questions that leads to us missing diagnoses and ironically enough, in an attempt to take cultural background into account, risks over-attributing symptoms to culture. The first time I saw a psychologist for assessment, she heard about my background growing up in Singapore under strict rules and deduced my presentation was trauma, not ADHD or autism. They were asking the standard – but wrong – questions. It took me two years to be recognised as an AuDHDer, with the delay partly because of my own executive functioning, but mostly because I needed to feel safe enough with another clinician to try again.

I am not alone in my story.

80 per cent of autistic women are undiagnosed by the time they turn 18 (McCrossin, 2022). Where are they ending up? In psychiatric clinics (Eberhard et al., 2022).

It is our duty of care to do due diligence and use our clinical judgement rather than rely on standardised tools to make our diagnostic statements. Our clinical judgement is the gold standard. When we diagnose individuals with autism or ADHD or beautifully, both, we are giving them the tools and frameworks to understand themselves, to lead a life of compassion, to do things in a way that works with their brain.

Evidence-based practice does not mean relying solely on scientific journals – that is only one part of the equation. Evidence-based practice is a triad, in which we look at the scientific evidence and integrate this with our clinical knowledge and patient values. We can look to the AuDHD community to learn more about what the balance of autism and ADHD feels like. This helps us understand the right questions to ask that don't yet exist in standardised interviews.

Take organisation, for example. The classic ADHD question may be looking at how an individual has difficulty organising themselves and their space as a 'symptom' of executive dysfunction. However, we need to look at compensatory strategies – a) does the person have someone in their space helping them to organise and b) how much effort does organisation take? Autism-specific questions that may come into play would be a) what is your current special interest? and b) Do you like organising and ordering your space? They may still be an ADHDer, but if organisation is part of their interests or regulatory tools, you'll find that the box wouldn't be ticked.

As clinicians, we should change and update our framework of reference in line with current best practices. This involves listening deeply to those with lived experience who speak so we can learn. We also need to take a critical look at the tools used in diagnostic assessments and the utility and validity of them for the populations we support, including who they are less valid for. A great way to learn about this change is to seek training from Autistic/ADHDer clinicians in Autism and ADHD Assessment. There are many of us who speak freely about our neurotypes and the reality of the balance between the two, like a wonderful dance where every day, there is a different leader.

It is imperative that we move away from the aftermath of the 70s and 80s where autism was a terrible disorder that would take you away from your family, and look to the idea that a diagnosis is recognition. A diagnosis can prevent further harm from being done. A diagnosis is the key to tools that help you live a life by design.

Earlier diagnosis plays an important role in preventing mental health decline (Oredipe et al., 2022). Clinicians have an important role to play in our community, with our healthcare approaches evolving from reactive – I'll support you when you're at breaking point (if we catch you in time) – to proactive – I see neurodivergent ways of doing life so I can support you in meaning-making this way.

It's hard for us to evolve, but evolve we must. We should rise to this challenge of expanding our understanding of developmental disability in line with current knowledge and lived experience, to be part of the solution for a better, inclusive future.

Sandhya Menon (she/her) is an Autistic/ADHDer Developmental Psychologist working in Naarm/Melbourne, Australia. She runs Onwards and Upwards Psychology providing parent, teacher and clinician education on supporting Autistic and ADHDer children, and has written two books, The Brain Forest and The Rainbow Brain.

Key sources

Crompton, C.J., Ropar, D., Evans-Williams, C.V., et al. (2020). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704–1712. 
Eberhard, D., Billstedt, E. & Gillberg, C. (2022). Neurodevelopmental Disorders and comorbidity in young adults attending a psychiatric outpatient clinic. Psychiatry Research, 313, 114638
Frazier, J.A., Biederman, J., Bellorde, C.A., et al.(2001). Should the Diagnosis of Attention-Deficit/Hyperactivity Disorder Be Considered in Children with Pervasive Developmental Disorder? Journal of Attention Disorder, 203–211.
Gadow, K.D., Devincent, C.J., Pomeroy, J., Azizian, A. (2005). Comparison of DSM-IV Symptoms in Elementary School-Age Children with PDD versus Clinic and Community Samples. Autism, 9, 392–415.
McCrossin, R. (2022). Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children (Basel)., Feb; 9(2), 272.
Oredipe, T., Kofner, B., Riccio, A., et al. (2022). Does learning you are autistic at a younger age lead to better adult outcomes? Autism, 136236132210867