Neurodiversity-does waiting for a diagnosis make a difference?

Waiting lists are getting longer and longer......

There is a reality in the increased waiting lists in diagnosing conditions such as Autism and ADHD . They can represent the reality of scarce supply of resources such as skilled staff (Culyer & Cullis,?1976 ). In some places in the UK these are now longer than 5 years.

How long have you been waiting to see if your child or you have a diagnosis of ADHD, DCD, DLD, Autism, Dyslexia, Tic Disorders? There has been more in the news recently.

Have you had one diagnosis and waiting to see a different professional for another one that often co-occurs? Do you want some practical guidance now about your child's sleep, making friends, getting dressed, writing, listening, speaking or understanding.,.. or understanding different emotions or sensory preferences?

Across the UK, the different national strategies set out targets for when a diagnostic assessment should commence. BMA report describes what is happening in relation to Autism.

What is the secondary impact of greater delay?

Concern can arise when people have a secondary impact on not gaining the support they require. What is the public health position on trying to reach as many people as possible and ensuring equity of provision? At an individual and group levels it can be challenging determining who is in greater need for assessment and who is at greater risk of secondary mental health impact.

The potential impacts of a delayed diagnosis on a child’s development can be considerate.The benefits of an early diagnosis can include?gaining support in education. Delay can impact on self esteem and confidence. For families delays can also create undue stress, and their child's challenges can be misinterpreted as poor behavioural issues. This can lead to children being excluded from school.

A delayed diagnosis may lead to mental health conditions going undiagnosed or actually arising. In children lack of support may increase the chances of being bullied and feeling different to others. We know that there are increased risks of anxiety and depression in people with ADHD, Autism and DCD. For example around 70% of people on the autism spectrum also have a co-concurring mental health condition.?For example, 42% of children with autism also have an anxiety disorder, compared to just 3% of children without autism.?

Thapar and colleagues in their recent excellent review paper (2023) provide some evidence of impact for late diagnosis or misdiagnosis.

"There is also emerging evidence that ‘late diagnosed’ autistic young people may be at risk for more severe depression. In one cohort study, autistic girls diagnosed with ASD ‘late’ (aged 14–17) showed the greatest risk of later developing depression compared to autistic boys and girls diagnosed in childhood (Gundel et al., 2018). Hosozawa, Sacker, and Cable (2021) found a similar link between late diagnosis in adolescence and later depression, but no sex difference. Interestingly, previous depression diagnoses are highly prevalent among individuals diagnosed with ASD in adulthood (Fusar-Poli, Brondino, Politi, & Aguglia, 2022), suggesting that like ADHD, ASD might be misdiagnosed as depression or depression might mask underlying ASD."

Financial impact

Delayed waiting times are associated with increased financial costs . ?The National Autistic Society have estimated that investing in ASD diagnosis would lead to cost savings for the NHS of up to ￡337 million?over five years, from reduced spending on mental health services. DCD costs have been estimated as well as ADHD costs.

With limited resources in any system the challenge is who gets what and when?

Triage is essential

Levels of delivery need to be considered and a mechanism for providing triage is essential recognising that the silos we have operated in are not reflective of the person with high levels of co-occurrence across neurodivergent conditions and a bias in terms of which ND gets more focus and resource e.g. Tic disorders are one of the Cinderellas of service delivery.

• Urgent - higher need- what information do you need to gather before being seen by the clinician?
• Acceptance onto a waiting list- what happens while waiting?
• Non acceptance onto a waiting list- what happens to this group?

What is the impact of waiting?

Koopmanschap, Brouwer, Hakkaartvan Roijen, and van Exel (2005 ) demonstrated theoretically that the negative impact of waiting time can be long term. The deteriorated condition of a person while waiting may take longer to recover or will not be reversed at all after a critical waiting time has passed. If someone while waiting becomes depressed or has increased anxiety, lost job, damaged relationships, entered into the justice system there can be additional costs for the waiting time that need to be recouped. It is hard to know the trajectory between length of time waiting and secondary consequences and how this relates to level of challenges being presented at Time 1 when they enter the waiting list.

What is the true impact?

There are a number of different studies for varying conditions that have considered the impact of waiting times.?Results are inconsistent as to whether longer waiting causes worse chances of functional remission, recurrence, treatment adherence, quality of life, and mortality. Most of these studies use field data, which are limited in sample size, number of providers, and covariates to control for confounders. More recently, studies have used administrative data to overcome some of these limitations.?

Is tackling the waiting list the only solution?

Is it time to consider a different way of tackling the challenge of increasing numbers? If we consider neurodivergent traits and the move to considering a more biopsychosocial approach rather than a narrower medical model is it time to design different systems?

Enabling people to manage their own conditions and providing links to local resources may mean we can reach more people effectively with limitations on resources. Is a diagnosis always the answer? Supported self management is one term that has been used. Not going it alone but enabling people to manage their own condition. Peer support can have real value to learn what is available locally/nationally and not feeling alone.

Professor Hamish Laing makes an important point recently on LinkedIn :

"The platform is ablaze and we have to change the narrative here. As the commonwealth fund reports show consistently, (Mirror,Mirror 2021) the UK is achieving really poor health outcomes and is sliding down the table on efficiency, equity, access and care processes: the things we like to say we are admired for worldwide. We can argue for more money but that is taking resources from investment in the wider determinants of health/illness and so runs the risk of worsening the situation in the long run. What is critical is that we get the very best value (outcomes that matter to patients /cost) from every pound invested in the health and well-being of UK citizens, and we all know that isn’t happening at the moment. Lots of low value activities and wasted resources often worsened by a relentless focus on “cost improvement”. So let’s focus on getting better outcomes (“outcomes improvement”?) from whatever investment there is and by releasing resources from low value interventions to invest in the high value activities. We could do so much better with what we already have and we should invest any extra cash, if it comes, on the things that achieve what matters most to patients."

If you are interested to learn more?go to:?https://www.doitprofiler.com ?or email me at [email protected] for a chat to start working together today.

What's your experiences? What service models can you share?

The blog author

I am Amanda Kirby, CEO of?Do-IT Solutions ?a tech-for-good company that delivers web-based screening tools and training that help 1000s of people deliver person-centered solutions relating to neurodiversity and wellbeing. Contact me if you want to discuss how we can help your organisation.

I am a mixed bag of experiences and skills and have 25+ years of working in the field of neurodiversity.

I am a medical doctor, Professor, and have a Ph.D. in the field of neurodiversity; parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself ( bits of me I share!).Theo Smith and I wrote together the award-winning book?Neurodiversity at Work?Drive Innovation, Performance and Productivity with a Neurodiverse Workforce . My 10th book has come out called?Neurodiversity in Education ?and I am very excited about sharing that with you. Thanks to my wonderful co-authors Paul Ellis and Abby Osbourne.