Neurodiversity- demand and supply... what to consider?

This is a long newsletter because life is complex and I can't write this in 600 words!

Very few children or adults are 'just' one thing!

Present systems struggle to determine who is in the most need or has the most complex needs, or what may be having the greatest impact for each person, their family and education in both the short and longer-term.

Time for cost effective solutions that reach more people....

Additional financial pressures on services, along with varying waiting lists and lack of provision for some conditions, are driving the need to develop cost-effective solutions. This is especially true as we know that Neurodivergent traits are not 'something that is just present in childhood'.

The time is now to think differently...

The Independent discussed the demand for autism spectrum disorder assessments and cited that there were a record 190,000?patients?are expected to be waiting for an?autism?diagnosis?by 2024, new analysis shows, as the NHS backlog soars.They went on to say "130,000 people are currently on the list to be seen – with 67,600 waiting for more than a year and say because of continually increasing demand the gap between the number of people waiting to be seen will widen further."

This is compounded by staff shortages seen across healthcare services.

I have been thinking about this for a long time... and published the above paper in 2018 with Dr Deborah Judge.

Another Welsh doctor discussed this way before me - Dr Julian Tudor Hart.

The 'Inverse Care Law' says those who need it most are the least likely to get it.

Some of the challenges we need to consider

There are some uncomfortable truths that we need to consider:

• Do we have all the same needs? No
• Do we all have the same opportunities to get help? No
• Have some of us had significant adversity in our lives by no choice of our own? Yes
• Do we all have access to the services in the same way? No
• Do we all know how to access help and can effectively utilise the existing systems? No
• Do we all have the money to go privately if we want a diagnosis? No
• As individuals do we often want what is best for us above what we want for others ? Probably and sadly, yes

We are not all equal ...suicide and adversity

I have been re-reading?Animal Farm, and Orwell used the animals and their actions to make the reader think about equality and inequality.

George Orwell wrote that ""Man serves the interest of no creature except himself." and also the famous quote " All animals are equal but some are more equal than others"

How do we decide who is in greatest need?

This is always a hard one. Long term strategy to support someone to give them their best chance to thrive v the need to support someone in crisis? Do we need to at least see those in crisis as quickly as possible? Isn't that how we see A and E services ... E = Emergency.

Sadly suicide rates are higher in those with ND traits

There have been a number of research studies showing that ADHD has an increased risk of mental health challenges such as depression and substance misuse.

Adults with ADHD are 5 x more likely than those without to have attempted suicide (14% vs 2.7%). That rises to one in four for women with ADHD.

Autistic adults/adults on autism spectrum with no learning disability are 9 x more likely to die by suicide than the general population and is the second leading cause of death for autistic people.

(Read a previous newsletter on the links with neurodiversity and mental health)

What if you have experienced some adverse life events?

Exposure to adverse life events increases your chances of having major depression, anxiety, and suicidal behaviour and also physical ill health.

An adverse life event may be generally defined as “a detectable occurrence representing discrete changes in the subject’s social or personal environment that is external and verifiable rather than internal or psychological”

There are a number of risk factors for youth suicidal actions including poverty, and educational level.

There is a cumulative impact in that the more events you have experienced the greater the impact. It also seems that the type of event and when it happens is also important.

Cost of ending up in the wrong place

We know that at least one in three prison have ADHD traits. Many of those individuals will not have had a diagnosis at all because they have had adverse life events.

In a study of 24 European countries, prisoner suicide rates were estimated to be between 3 and 8 x rates in the general population for males (Fazel et al., 2017).?

Work I have been doing using Do-IT Profiler in the justice system has shown the impact of cumulative adversity such as being homeless prior to prison, having been excluded in school, being in care and interestingly and importantly having had one or more traumatic brain injury events in your life.

In addition to this is the number of different neurodivergent traits you are showing. Importantly traits do not always falling into neat patterns and can be neatly categorised.

Not everyone knows how to get to a diagnosis and support or the skills to access services e.g. ADHD

Russell and colleagues review in 2016 showed that poorer families are on average 2 x more likely to have ADHD than their those from higher SES families.(https://pubmed.ncbi.nlm.nih.gov/26266467/)

Parental awareness and parental access is not equal

Parental perceptions and experiences may influence whether parents consider symptoms severe enough to require intervention. Parental socioeconomic status and educational level may affect their ability to seek and obtain a diagnosis for their child (Hamed et al., 2015). If you are trying to juggle two jobs, pay the rent and clothe your kids it may be difficult to find time to chase school or be able to take time off to go to an assessment with your child. This may be the reality!

Even if parents decide to seek a diagnosis, structural inequalities in systems may prevent this.

For example, there is currently a ‘postcode lottery’ in diagnostic provision for ASD/ASC and ADHD in the United Kingdom (Boseley, 2018; Lamb, 2018) and even where this is not present, parents report that gatekeepers such as teachers and General Practitioners (GPs) may not readily refer children for the appropriate assessment. This may be related to lack of awareness of NDDs and seeing some kids as having 'behaviour' challenges and not considering the reasons for their distress and/or lower levels of confidence/knowledge regarding referral processes.

Unfortunately, this penalises the most vulnerable: for example, parents who voice concerns about their child using technical language are more likely to gain a prompt diagnosis (Ahern, 2000), yet those from low-income backgrounds, those with low levels of education and those whose first language is not English may be less likely to be able to do this.

Low literacy levels make it harder to get into systems and access support. This is related to poverty.In 2018 the Literacy trust reported that:

"A boy born in Stockton Town Centre (which has some of the most serious literacy challenges in the country) has a life expectancy?26.1 years shorter?than a boy born in North Oxford (which has some of the fewest literacy challenges)".

How can you complete a form if you can't read it?

In order to gain additional support for your child in school in England you need to complete forms for an Educational Health Care Plan applications. I tested the content for readability of one form and you needed the literacy level of related to year 9/10 levels of literacy. BUT according to government stats 73% of 10 to 11 year olds met the expected standard in reading in the 2018 to 2019 school year. This means that nearly 1 in 3 did not!

Identifying needs earlier

Challenges and differences start early and have a long term impact on education and employment outcomes.

Government white paper, ‘Back on Track’, states that 66% of permanently excluded children and 75% of children in PRUs have special educational needs.

Kuriyan and colleagues (2014) showed that job loss was positively predicted by a higher rate of academic problems and diagnosis of ADHD and college + education was a positive predictor for job success.

Who do we need to see in our overburdened waiting lists?

There are finite resources - professionals and money.

We miss and misunderstand swathes of society which ends up children with ADHD being excluded from school and many ending up in the justice system. We miss others with other neurodivergent traits too.

What are the costs?

Justice systems : In 2021/2022 it cost ￡48,162 year to keep a person in prison.The prison population in England and Wales was?83,6876?as of Friday 17th February 2023. It is projected to increase steadily to reach 94,400 prisoners by March 2025 and between 93,100 and 106,300 by March 2027. If more than one in three people have ADHD and other ND traits... we could save a LOT of money if we identified and supported more people earlier.....

In care: In some cases it can cost ￡1000s per week to look after a child in care. We know that many children 'in care' have higher rates of neurodivergent traits. Some of these may be associated with attachment challenges. However we may overlook conditions such as ADHD and consider it is all to do with that and may not consider ADHD. ( more than1 in 4 males in prison have been in care!)

Children with ADHD have more than 100 times greater risk of being permanently excluded from school than other children.A child permanently excluded from school has been estimated to cost ￡370,000 per young person across their lifetime in education, benefits, healthcare, and criminal justice cost. ( NOTE: 2/3 males in prison have been excluded from school)

Do the maths!

How should we choose who is in the greatest need?

There has to be some system of triage even if we don't like it.. someone having a heart attack is usually seen in casualty before someone with a broken leg. The same goes for someone who is potentially suicidal, been in prison and now homeless probably needs to be seen before someone who would like to know if they have ADHD or Autism but is in a job at the present time.

I was at HMP Brixton this week at the launch of the ADHD Foundation/Takeda Recommendations report where MPs Sir Robert Buckland and Damian Hind discussed the need for supporting people upstream and within the criminal justice system who have ADHD.

What do you think?

We see there are increasing waiting lists for all neurodevelopmental services for children and adults.Ulrich and Jane Sedgewick Muller recently wrote about this in the British Medical Journal. The Guardian wrote recently about services being swamped.

As a society we are going to need to choose what is important to all of us and not to those who shout loudest.

We can provide some practical guidance today to many if we can target functional needs. At the same time we can provide those with the greatest needs a more in depth assessment of overall challenges. I think we shouldn't silo this into specific diagnostic groupings but consider the fuller picture to ensure we understand the individual fully in the context of their lives.

Nothing = Nothing.

Waiting on a list for years is not very helpful at all.

A diagnosis doesn't always get you the resources you need especially if we end up spending all the money on diagnosing.

Equity rather than equality

Linking in people to communities, charities, local services and other support is essential to optimally use what we already have in our systems.?

Staff training in the community means we can reach more children in schools and reduce exclusions. Youth training, parent training, employer training... all this can help to reach more people...

I started developing Do-IT Profiler tools (*The Profiler tools are not a single assessment and content also varies depending on age, context etc and are person centred) more than 15 years ago to try and provide more practical support in an equitable manner.

Like a car you also need good drivers with a sense of direction!

There is not one simple solution but we need to be prepared to have uncomfortable conversations.

I also think we can still be kind and respectful to each other while doing so!

Please share this!

The blog author

I am Amanda Kirby, CEO of?Do-IT Solutions?a tech-for-good company that delivers web-based neurodiversity and wellbeing screening tools and training that help 1000s' of people. We deliver person-centered solutions.

Contact me if you want to discuss how we can help your organisation be more neuroinclusive. (www.doitprofiler.co )

I am a mixed bag of experiences and skills and have 35 years of working in the field of neurodiversity.I am a medical doctor, Emeritus Professor, and also have a Ph.D. in the field of neurodiversity; I am most importantly a parent and grandparent to neurodivergent wonderful kids and am neurodivergent myself.

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 came out in March called?Neurodiversity in Education?with co-authors Paul Ellis and Abby Osbourne. I do a podcast also with Theo each week called Neurodiversi-tea.

Some references

Eddy LD, Eadeh HM, Breaux R, Langberg JM. Prevalence and predictors of suicidal ideation, plan, and attempts, in first-year college students with ADHD. J Am Coll Heal. 2019;68:1–7.

Giupponi G, Giordano G, Maniscalco I, Erbuto D, Berardelli I, Conca A, et al. Suicide risk in attention-deficit/hyperactivity disorder. Psychiatr Danub. 2018;30(1):2–10.?https://doi.org/10.24869/psyd.2018.2.)

Stickley A, Tachimori H, Inoue Y, Shinkai T, Yoshimura R, Nakamura J, et al. Attention-deficit/hyperactivity disorder symptoms and suicidal behavior in adult psychiatric outpatients. Psychiatry Clin Neurosci. 2018;72(9):713–22.?https://doi.org/10.1111/pcn.12685.)

Fitzgerald C, Dalsgaard S, Nordentoft M, Erlangsen A. Suicidal behaviour among persons with attention-deficit hyperactivity disorder. Br J Psychiatry. 2019;215:1–6.

https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-021-03247-6