Neurodiversity in Healthcare

This page is explaining the rationale of why we have developed Profiler tools to be used within the healthcare setting with background information to aid understanding.

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Increasing Awareness and Expanding Demand

The awareness of neurodevelopmental conditions in both children and adults, particularly Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Conditions(ASC), has grown significantly, leading to increased demand for services across the UK.

Not everyone will have gained a diagnosis in childhood. Some adults may have been overlooked, misdiagnosed, or misunderstood in relation to a range of conditions in the past, including females who have often been missed and some misdiagnosed. In the past diagnostic traits relating to neurodivergent conditions are now recognised as having a male bias. Girls and women often can mask or camouflage their challenges and are less disruptive. This means that the challenges are seen at home by parents and often missed in school as the student seems to be coping OK (but often not at their full potential).

Additionally, those navigating multiple systems and not following traditional educational routes through school and into the workplace.

This surge in demand is not only in children services but has extended to adult services, especially as increasing numbers of children move from child to adult service provision. The development of adult neurodiversity services is relatively new and aligns with our understanding that developmental neurodivergent conditions such as ADHD, ASC, Developmental Coordination Disorder (DCD) and Developmental Language Disorder (DLD) It has not been so long since we recognised that all of these conditions are lifelong and don’t just go away when you become an adult. The term developmental (born with) in contrast to acquired (gain during your life) meant that a lot of the focus of services has been designed for children (and their parents) and a lifelong perspective was not viewed from the start.

This contrasts with some medical conditions like Diabetes where we recognise that a diabetic is a diabetic for life and there has been some excellent design in services supporting young people and teenagers during the transition to adult services. In addition, the focus from the start is minimising long term impact of having Diabetes and maintaining independence. This same approach is important for us when planning services in the context of neurodiversity.

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Designing Healthcare Services

The UK government’s focus is to ensure every pound spent on health is done so wisely. A combination of healthcare professional shortages and increased recognition of neurodevelopmental conditions is putting pressure on service delivery and necessitates a restructuring of service models in order to reach as many people as possible who require support.

There is also a strong argument for doing so, with evidence from research demonstrating the cost-efficiency of treatment for conditions such as ADHD throughout a person’s lifespan. Treatment for some people with ADHD may be helped by medications but in other cases practical and personalised support with everyday activities may be life changing. Life is ever changing and your needs today may change tomorrow because of things going on in your life such as a move from school to college or from education to employment. Other factors such as relationships and housing can also impact what you need in terms of support. This is a dynamic and changing picture and utilising Profiling systems that capture this change over time can be life enhancing.

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Effective Identification and Prioritisation

It is crucial to effectively identify and prioritise children and adults with a range of neurodevelopmental disorders to ensure that limited resources are directed towards those with the greatest needs.

Ideally, we need to provide help and support for all neurodevelopmental conditions including ADHD (attention deficit hyperactivity disorder), Autism Spectrum Disorder, Developmental Language Disorders, Developmental Coordination Disorder, Tic Disorders, and others. But this needs to be across all conditions. It is also important that we do not favour some conditions more than others when we design and deliver services. They need to fit the people. If a system is inaccessible and does not meet the needs of all who need it, then we need to change the shape of delivery, not try to make people fit into one specific box or another.

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What are the Numbers?

A conservative estimate suggests that neurodevelopmental conditions and disorders affect 1 in 8 people. The numbers of people that are quoted can also be misleading,

as they can describe individual conditions and do not account for the presence of someone with more than one condition which is in reality very common.

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Levelling the Playing Field

Reality check: Not everyone needs a diagnosis for support to be given.

In every system there are finite resources available. What does that mean?
We only have so many professionals available and so much funding to meet the needs of the whole population.

The reality is that if everyone who thought they had ADHD or Autism was put on a waiting list it would very quickly be overloaded and just get longer and longer. This is already happening. Without some processes in place there would be no way of working out who needs to be seen first.

If everyone enters a waiting list system in the same way then we are not considering that some people are in greater need. We could miss the people who have higher levels of support needs and are at crisis point at this time.

We need to avoid an approach where the ‘those who shout loudest’ get their needs met first as this increases inequality even further! This has been called ‘the inverse care law’… those who need the services the most are the ones least likely to get them. We need to avoid creating a system where this is the case.

What is most important is to try our best to identify who needs to gain a diagnosis as quickly as possible and especially target first those who are in a potential crisis situation e.g. going to court, losing their home or their job. This is called triaging and we often do this by the GP asking some key questions and understanding the person’s current situation as a whole.

Recognising inequity

Some people that have some challenges and specific conditions receive more services and support than others.

There is a variable waiting list length across the UK. Numbers are significantly higher in some parts of society, especially people who have faced adversity, those at risk of homelessness, those with care experiences, school exclusion.

In those encountering the criminal justice system the rates are at least 1 in 3 people. The reason why there are more people in prison who are neurodivergent is not because of their neurodiversity which is often not recognised but because of the impact of adversity in their lives and neurodiversity combination having a synergistic effect i.e. 1=1=3!

Females have not always been diagnosed with neurodivergent conditions because some have been misdiagnosed with other conditions and ‘female’ symptoms have not always been considered.

Some people who are ‘subthreshold’ miss out on support. This means someone that does not meet a threshold to gain a diagnosis i.e. not quite bad enough, ending up in other services because of the impact of lack of practical support/identification/understanding by others e.g. becoming anxious, low self-esteem, depressed, self-harming.

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Meeting the Needs of Each Person

Categorising individuals very specifically may not always be the best way to meet their needs. Some people have complex needs that don’t neatly fit into traditional diagnostic categories or services. This may mean they might end up going from one service to another or not getting the help they need at all.

It’s time to shift to a different approach, one that looks at everyone as an individual. We need to consider the unique circumstances of a person in various settings, such as at home, work, with their family, in caregiver roles, and while studying. This approach is crucial for delivering quality healthcare.

There is no classical person with Autism or ADHD. Everyone is different and has a range of experiences and challenges that will mean different support needs and may also change over time. See the case studies about Jan, Alex, Tom, and Sara.

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Path to Inclusivity

We can make a difference by:

Putting patients first: A patient-centric approach must be embedded in the design of services to provide high-quality healthcare that aligns with ethical values and is more sustainable in the long run.

Training more healthcare professionals: By training more GPs, psychologists, assistant psychologists, and nurse specialists in our communities we can reach and help more people. Gaining expertise in the community will help with early diagnosis of conditions like ADHD, ensuring more people get the support they need. For those with more complex needs, it can lead to referrals to specialists like adult psychiatrists.

Expanding our services: Services will need to grow to meet the increasing demand. We understand the impact early identification and support can have on long-term outcomes.

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Creating Practical Solutions

Providing practical tools for anyone who has specific day- to- day challenges whether they are requiring a clinical assessment or not seems to be a sensible do-no-harm approach. For example:

  • Help with independent living skills such as organisational skills.
  • Strategies for gaining and sustaining a job.
  • Study skills for someone in education.
  • Financial guidance such as signposting someone to the local Citizen Advice Bureau.

The tools and strategies will be different from person to person and may vary at a local level.

This is where the Do-IT Profiler system comes in and can be of real help in delivering some of these person-centred tools and strategies.

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Do-IT Profiler

is an evidence-informed cloud-based system which is secure and robust and designed to support people who are neurodivergent in a personalised way.

It has a track record of over a decade of use in a wide range of settings, including education and the justice setting helping to support individuals and professionals working with them.

The platform is designed to gather information in a consistent and accessible manner and provides tools to aid support and to improve communication.

Everything in one place

The system has been designed with experience and extensive feedback. The founder, Professor Amanda Kirby, is not only neurodivergent and has family members but ran a clinical centre for more than 20 years and has been undertaking research for more than 30 years in the field of neurodiversity. This deep understanding has been the basis of developing the Do-IT system. She has written more than 100 research papers, and 10 books in the field and trained 10s of 1000s of people globally.

What we have done by designing the Do-IT Profiler is help pull together the relevant information about a person and present this in a format so the clinician/GP has a better overall picture and can see that all at their fingertips.

This allows them to make better and quicker informed decisions. It also helps with planning and for ongoing support as everything is in one place.

What are the tools in Do-IT Profiler?

Do-IT Profiler is: 

  • An accessible person-centred system of tools that deliver support to the individual in the context of their lives.  
  • A system that allows the person to gather information about themselves and provides them with increased understanding of their strengths and challenges providing practical resources to help. 
  • It can be hard sometimes to see where to get started especially when you are feeling overwhelmed. The system provides some practical strategies to get going. This could be related to a wide range of areas for the person including help organisation, studying, sleep, with relationships or managing in the workplace.  
  • In some cases, Profiler (depending on the person’s response) signposts to local services as well. 
  • The personalised guidance means that everyone gets some support and strategies on Day 1 whether they go on a waiting list, gain an assessment or not.  
  • The Profiler system assists the clinical services and professionals working within them helping with some administrative tasks aiding efficiency for time poor professionals. This helps them to spend more time on patient care.  
  • It is an adaptable system, and the content can be amended for the context it is being used in. 
  • It can be translated into multiple languages. 

 

It is not…. 

  • a tick box exercise to see if you are simply X or Y. 
  • delivering you an over simplistic IQ score that does not say who you are as a whole. 
  • deciding whether you gain a diagnosis or not from specific clinical services where you live. 

Do-IT Solutions is there to enhance local service offerings. We do not determine the local waiting list outcomes. This is determined by the local services. Our system is there to aid the decision making processes by collating information in one place for the clinicians to see ( saving time) and providing practical tools to help each person regardless of what stage the person is in gaining or diagnosis ( or not needing to). 

Do-IT Profiler designed for individuals and used in large scale organisations. 

 

Remember: Our brains are not in neat boxes! We are messy.  

We can forget the extensive evidence that supports the co-occurrence or overlap of neurodevelopmental conditions. For example, about 60% of people with Autism also have DCD, (also known as Dyspraxia) and some people with ADHD will often also have Dyslexia traits as well. There is also evidence that some psychiatric conditions like anxiety, depression and bipolar disorder are more common with people with conditions such as ADHD and Autism. 

When we don’t consider this, it can have a cost in terms of time, and resources. Fragmentation of services can also result in repetitive processes for people having to tell their ‘story’ again and again and trying to navigate various services without having their overall support needs met.  

Individuals can bounce between services. 

Key Features of the Do-IT Profiler:

Person-Centred 

  • Designed to provide personalised and practical guidance to the person in the context of their lives and setting (and family) before, during, and after any clinical contacts. 
  • Profiler asks the person relevant questions relating to neurodiversity and wellbeing and also about past and present experiences for the clinician to gain a full picture of that person. This saves the person repeating information about themselves again and again and it is all collated in one place. 
  • Do-IT does not decide who is seen by clinical services but aids clinical decision making by collating the information the person has provided all in one place. 

 Accessible Design 

  • Accessible interface designed with extensive feedback from neurodivergent people. 
  • The system enables the person to assess their strengths and challenges relating to six areas of neurodivergent traits that commonly overlap and delivers instant practical guidance. 
  • The system allows the individual to complete information about important and relevant background factors that may be a factor in considering need and support. This can be done at their own pace. 
  • Additional tools can be added to the system depending on the clinical and local context making the information more pertinent to the end user and to clinical services e.g., entry points into services mimicking current approaches not replacing them but ensuring consistency. 
  • Optional tools can be included to enable ongoing support and monitoring (e.g., study skills to support someone in education; tracking change following intervention/diagnosis and/or medication). 

User-Friendly Experience 

  • Generating instant, personalised reports and guidance for both staff and end-users. 
  • Accessible, voice enabled. 
  • Resources in multiple formats. 
  • Terminology can be explained to aid understanding. 
  • Multiple language options. 
  • Allowing access for those with low literacy levels or English as an Additional Language to have their needs assessed and provides them with meaningful guidance. 

Labour Saving 

  • Reduces the need for information to be repeated by the patient and allows for instant collation. 
  • Information gathered provides an instant person-centred report with guidance and resources. This can be shared e.g. via email  by the person if they choose to do so, and the clinical staff are able to see the information on their management dashboard, 
  • Reducing administrative load so more patients can be seen effectively. 
  • Can assist with clinical report writing pulling in relevant content into a report template. 
  • Easy to use and minimal need for staff training – creating a  sustainable solution. 
  • Training content (either provided by Do-IT Profiler’s or if there are local resources) on neurodevelopmental conditions can be accessed by staff if required aiding with upskilling. 

 

Potential Benefits of using Do-IT Profiler 

The Profiler system holds the potential to yield short, medium, and long-term benefits as it can be adapted to create solutions tailored to local needs.  

These potential gains underscore the ability of the Profiler system to not only enhance immediate efficiency but also foster sustainable improvements in healthcare processes meeting the needs of more people and helping to identify those who are in the greatest need for support. 

Short-Term Benefits:

Individuals

  • Gaining an understanding of strengths and challenges.
  • Instant personalised report.
  • Practical tools and tips to help.
  • Can be used to communicate needs to others.
  • Person centred – every report is unique to that person.

Commissioners

  • Locally designed solution understanding and  meeting the needs of the local population. 
  • Improved efficiency of processes saving administrative and clinical time. 
  • Reducing the administrative load. 
  • Helping to maximise the local provision that is already in existence including sign posting to local voluntary sector services. 
  • Enhanced quality of information within neurodevelopmental systems to aid management and future planning. 
  • Improved communication among all stakeholders. 
  • Establishment of consistent pathways and processes. 
  • Reduced waiting times for individuals with the most pressing needs. 
  • Outcome measures and mapping of local needs accessible from management centre 
  • Accessible and transparent consent processes. 

 Clinicians 

  • Efficiency gains, such as time saved in document completion and collation for both the individual and the clinician. 
  • System can explain the processes to the patient so the clinician has more time for patient engagement. 
  • System provides the capability to gather information from multiple sources when necessary. 
  • Ability to speed up report writing by pulling information from relevant sections into the report. This can be tailored for each service. 
  • Free up time for more patient-clinician interaction. 
  • Helping to have better interdisciplinary working by reducing duplication of information. 

Administrators 

  • Bulk upload of patients for sending out information and providing access to Profiler. 
  • Potential to receive an email on patient completion of Profiler so reducing the need to check if this has occurred. 
  • All information collated and able to gain multisource information if required.
  • Person  
  • Delivery of information in an accessible format so that people can engage with the services equitably regardless of their access needs. 
  • Providing information and practical strategies from day 1 regardless if they meet the criteria for assessment. 
  • Providing personalised guidance across neurodevelopmental conditions and not just by diagnostic categorisation. 

 

Medium and Long-Term Benefits: 

  • Streamlined collation of information across and within clinical pathways. 
  • Maximising professionals working in the setting. 
  • Widening access and improving equity. 
  • Data and in depth understanding of local needs aid planning of services to match the needs of the community. 
  • Improved clinical outcomes operating a human centred model. 

 

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Relevant References

Alexander-Passe, N. (2016), “Dyslexia: Investigating Self-Harm and Suicidal Thoughts/Attempts as a Coping Strategy”, Journal of Psychology & Psychotherapy, Vol. 5 No. 6, p. 1000224. 

Anderson, S.A.S., Hawes, D.J. and Snow, P.C. (2016), “Language impairments among youth offenders: A systematic review”, Children and Youth Services Review, Elsevier Ltd, Vol. 65, pp. 195–203.

APA. (2013), Diagnostic and Statistical Manual of Mental Disorders, 5th ed., American Psychiatric Publishing, Washington, DC.

Astle, D.E. and Bathelt, J. (2019), “Remapping the cognitive and neural profiles of children who struggle at school”, Developmental Science, Vol. 22, p. e12747.

Babikian, T., Merkley, T., Savage, R.C., Giza, C.C. and Levin, H. (2015), “Chronic Aspects of Pediatric Traumatic Brain Injury: Review of the Literature”, Journal of Neurotrauma, Vol. 32 No. 23, pp. 1849–1860.

Biederman, J., Mick, E., Faraone, S. V, Braaten, E., Doyle, A., Spencer, T., Wilens, T.E., et al. (2002), “Influence of Gender on Attention Deficit Hyperactivity Disorder in Children Referred to a Psychiatric Clinic”, American Journal of Psychiatry, Vol. 159 No. 1, pp. 36–42.

Bihlar Muld, B., Jokinen, J., Bölte, S. and Hirvikoski, T. (2015), “Long-term outcomes of pharmacologically treated versus non-treated adults with ADHD and substance use disorder: A naturalistic study”, Journal of Substance Abuse Treatment, The Authors., Vol. 51, pp. 82–90.

Bishop, D.V.M., Whitehouse, A.J.O., Watt, H.J. and Line, E.A. (2008), “Autism and diagnostic substitution: evidence from a study of adults with a history of developmental language disorder”, Developmental Medicine & Child Neurology, Vol. 50 No. 5, pp. 341–345.

Braiden, H.J., Bothwell, J. and Duffy, J. (2010), “Parents’ experience of the diagnostic process for Autistic Spectrum Disorders”, Child Care in Practice, Vol. 16 No. 4, pp. 377–389.

Bryan, K., Freer, J. and Furlong, C. (2007), “Language and communication difficulties in juvenile offenders”, International Journal of Language and Communication Disorders, Vol. 42 No. 5, pp. 505–520.

Butwicka, A., Långström, N., Larsson, H., Lundström, S., Serlachius, E., Almqvist, C., Frisén, L., et al. (2017), “Increased Risk for Substance Use-Related Problems in Autism Spectrum Disorders: A Population-Based Cohort Study”, Journal of Autism and Developmental Disorders, Springer US, Vol. 47 No. 1, pp. 80–89.

Capusan, A.J., Bendtsen, P., Marteinsdottir, I. and Larsson, H. (2019), “Comorbidity of adult ADHD and its subtypes with Substance Use Disorder in a large population-based epidemiological study”, Journal of Attention Disorders, Vol. 23 No. 12, pp. 1416–1426.

Chang, H.K., Hsu, J.W., Wu, J.C., Huang, K.L., Chang, H.C., Bai, Y.M., Chen, T.J., et al. (2018), “Traumatic Brain Injury in early childhood and risk of Attention-Deficit/Hyperactivity Disorder and Autism Spectrum Disorder: a nationwide longitudinal study”, Journal of Clinical Psychiatry, Vol. 79 No. 6, available at:https://doi.org/10.4088/JCP.17m11857.

Cleaton, M.A.M. and Kirby, A. (2018), “Why Do We Find it so Hard to Calculate the Burden of Neurodevelopmental Disorders?”, Journal of Childhood & Developmental Disorders, Vol. 4 No. 3, pp. 1–20.

Conti-Ramsden, G., Simkin, Z. and Botting, N. (2006), “The prevalence of autistic spectrum disorders in adolescents with a history of specific language impairment (SLI)”, Journal of Child Psychology and Psychiatry and Allied Disciplines, Vol. 47 No. 6, pp. 621–628.

Crane, L., Chester, J.W., Goddard, L., Henry, L.A. and Hill, E. (2016), “Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom”, Autism, Vol. 20 No. 2, pp. 153–162.

Creese, B. (2016), An Assessment of the English and Maths Skills Levels of Prisoners in England, London Review of Education, Vol. 14, London, UK, available at:https://doi.org/10.18546/LRE.14.3.02.

Day,A (2022), Disabling and criminalising systems? Understanding the experiences and challenges facing incarcerated, neurodivergent children in the education and youth justice systems in England. https://www.sciencedirect.com/science/article/pii/S2666353822000327

Dean, M., Harwood, R. and Kasari, C. (2017), “The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder”, Autism, Vol. 21 No. 6, pp. 678–689.

Dinkler et al (2017), Maltreatment‐associated neurodevelopmental disorders: a co‐twin control analysis, Journal of Child Psychology and Psychiatry,Vol.58 (6), p.691-701

Van Duijvenbode, N. and Vandernagel, J.E.L. (2019), “A systematic review of Substance Use (Disorder) in individuals with mild to borderline Intellectual Disability”, European Addiction Research, Vol. 25 No. 6, pp. 263–282.

Engel, G.L. (1977), “The need for a new medical model: A challenge for biomedicine”, Science, Vol. 196 No. 4286, pp. 129–136.

Engel, G.L. (1980), “The clinical application of the biopsychosocial model”, American Journal of Psychiatry, Vol. 137 No. 5, pp. 535–544.

Farooq, R., Emerson, L.M., Keoghan, S. and Adamou, M. (2016), “Prevalence of adult ADHD in an all-female prison unit”, ADHD Attention Deficit and Hyperactivity Disorders, Vol. 8 No. 2, pp. 113–119.

Fisher, M.H., Moskowitz, A.L. and Hodapp, R.M. (2013), “Differences in social vulnerability among individuals with Autism Spectrum Disorder, Williams syndrome, and Down syndrome”, Research in Autism Spectrum Disorders, Elsevier Ltd, Vol. 7 No. 8, pp. 931–937.

Flory, K. and Lynam, D.R. (2003), “The relation between Attention Deficit Hyperactivity Disorder and substance abuse: What role does Conduct Disorder play?”, Clinical Child and Family Psychology Review, Vol. 6 No. 1, pp. 1–16.

Fuller-Thomson, E., Carroll, S.Z. and Yang, W. (2018), “Suicide Attempts Among Individuals With Specific Learning Disorders: An Underrecognized Issue”, Journal of Learning Disabilities, Vol. 51 No. 3, pp. 283–292.

Gershon, J. (2002), “A meta-analytic review of gender differences in ADHD”, Journal of Attention Disorders, Vol. 5 No. 3, pp. 143–154.

Giannini, M.J., Bergmark, B., Kreshover, S., Elias, E., Plummer, C. and O’Keefe, E. (2010), “Understanding suicide and disability through three major disabling conditions: Intellectual disability, spinal cord injury, and multiple sclerosis”, Disability and Health Journal, Vol. 3 No. 2, pp. 74–78.

Green, J.L., Rinehart, N., Anderson, V., Nicholson, J.M., Jongeling, B. and Sciberras, E. (2015), “Autism spectrum disorder symptoms in children with ADHD: A community-based study”, Research in Developmental Disabilities, Elsevier Ltd., Vol. 47, pp. 175–184.

Gudjonsson, G.H., Sigurdsson, J.F., Bragason, O.O., Newton, A.K. and Einarsson, E. (2008), “Interrogative suggestibility, compliance and false confessions among prisoners and their relationship with Attention Deficit Hyperactivity Disorder (ADHD) symptoms”, Psychological Medicine, Vol. 38 No. 7, pp. 1037–1044.

Gudjonsson, G.H., Sigurdsson, J.F., Sigfusdottir, I.D. and Young, S. (2012a), “False confessions to police and their relationship with conduct disorder, ADHD, and life adversity”, Personality and Individual Differences, Vol. 52 No. 6, pp. 696–701.

Gudjonsson, G.H., Sigurdsson, J.F., Sigfusdottir, I.D. and Young, S. (2012b), “An epidemiological study of ADHD symptoms among young persons and the relationship with cigarette smoking, alcohol consumption and illicit drug use”, Journal of Child Psychology and Psychiatry and Allied Disciplines, Vol. 53 No. 3, pp. 304–312.

Harpin, V. and Young, S. (2012), “The challenge of ADHD and youth offending”, Cutting Edge Psychiatry in Practice, Vol. 2, pp. 138–143.

Harrop, C., Gulsrud, A. and Kasari, C. (2015), “Does gender moderate core deficits in ASD? An investigation into restricted and repetitive behaviours in girls and boys with ASD”, Journal of Autism & Developmental Disorders, Vol. 45 No. 11, pp. 3644–3655.

Hiller, R.M., Young, R.L. and Weber, N. (2014), “Sex differences in Autism Spectrum Disorder based on DSM-5 criteria: evidence from clinician and teacher reporting”, Journal of Abnormal Child Psychology, Vol. 42 No. 8, pp. 1381–1393.

Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P. and Bölte, S. (2016), “Premature mortality in autism spectrum disorder”, British Journal of Psychiatry, Vol. 208 No. 3, pp. 232–238.

HM Inspector of Probation (2021), – Neurodiversity a whole Professor Amanda Kirby child approach for youth justicehttps://www.justiceinspectorates.gov.uk/hmiprobation/wp-content/uploads/sites/5/2021/07/Neurodiversity-AI.pdf

Hofvander, B., Delorme, R., Chaste, P., Nydén, A., Wentz, E., Ståhlberg, O., Herbrecht, E., et al. (2009), “Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders”, BMC Psychiatry, Vol. 9, pp. 1–9.

Hughes, N., Williams, H., Chitsabesan, P., Davies, R. and Mounce, L. (2012), Nobody Made the Connection: The Prevalence of Neurodisability in Young People Who Offend, London, UK, available at: https://yjlc.uk/wp-content/uploads/2015/03/Neurodisability_Report_FINAL_UPDATED__01_11_12.pdf.

Impey, M. and Heun, R. (2012), “Completed suicide, ideation and attempt in attention deficit hyperactivity disorder”, Acta Psychiatrica Scandinavica, Vol. 125 No. 2, pp. 93–102.

Jawaid, A., Riby, D.M., Owens, J., White, S.W., Tarar, T. and Schulz, P.E. (2012), “‘Too withdrawn’ or ‘too friendly’: considering social vulnerability in two neuro-developmental disorders”, Journal of Intellectual Disability Research, Vol. 56 No. 4, pp. 335–350.

Jones, L., Goddard, L., Hill, E.L., Henry, L.A. and Crane, L. (2014), “Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom”, Journal of Autism and Developmental Disorders, Vol. 44 No. 12, pp. 3033–3044.

Keenan, M., Dillenburger, K., Doherty, A., Byrne, T. and Gallagher, S. (2010), “The Experiences of Parents During Diagnosis and Forward Planning for Children with Autism Spectrum Disorder”, Journal of Applied Research in Intellectual Disabilities, Vol. 23, pp. 390–397.

Kent H, Kirby A, Leckie G, Cornish R, Hogarth L, Williams WH.(2023) Looked after children in prison as adults: life adversity and neurodisability. Int J Prison Health. Jan 24. doi: 10.1108/IJPH-08-2022-0051. Epub ahead of print. PMID: 36689249.

Kent H, Kirby A, Leckie G, Cornish R, Hogarth L, Williams WH. (2023) School to Prison Pipelines: Associations between school exclusion, neurodisability, and age at first conviction in male prisoners. Forensic Science International: Mind and Law.  (in press). Available at: https://www.sciencedirect.com/journal/forensic-science-international-mind-and-law.

Kirby,A et al., (2010), “The Development and Standardization of the Adult Developmental Co-Ordination Disorders/Dyspraxia Checklist (ADC),” Research in Developmental Disabilities 31, no. 1 (2010): 131–139

Kirby,A Saunders,L (2015), A case study of an embedded system in prison to support individuals with learning difficulties and disabilities in the criminal justice system

Journal of Intellectual Disabilities and Offending Behaviour ISSN: 2050-8824

Kirby,A and Gibbons, H.,(2017),Rationale and use of computer screening tools in prisons for people with learning difficulties and disabilities; https://www.crimeandjustice.org.uk/sites/crimeandjustice.org.uk/files/PSJ%20235%20January%202018.pdf

Kirby et al (2020), Understanding the complexity of neurodevelopmental profiles of females in prison. https://www.semanticscholar.org/paper/Understanding-the-complexity-of-neurodevelopmental-Kirby-Williams/90131c20d2181d606a1927def73c62cfebcc846d

Kirby et al (2020), Young men in prison with Neurodevelopmental Disorders: Missed, misdiagnosed and misinterpreted. Prison Service Journal. https://www.crimeandjustice.org.uk/sites/crimeandjustice.org.uk/files/PSJ%20251%2C%20Neurodevelopmental%20disorders.pdf

Knop, J., Penick, E.C., Nickel, E.J., Mortensen, E.L., Sullivan, M.A., Murtaza, S., Jensen, P., et al. (2009), “Childhood ADHD and conduct disorder as independent predictors of male alcohol dependence at age 40”, Journal of Studies on Alcohol and Drugs, Vol. 70 No. 2, pp. 169–177.

Van Der Kolk, B.A. (2005), “Developmental Trauma Disorder: A new rational diagnosis for children with complex trauma histories”, Psychiatric Annals, Vol. 35 No. 5, pp. 401–408.

Lai, M.-C., Lombardo, M. V, Ruigrok, A.N. V, Chakrabarti, B., Auyeung, B., Szatmari, P., Happé, F., et al. (2017), “Quantifying and exploring camouflaging in men and women with autism”, Autism, Vol. 21 No. 6, pp. 690–702.

Lamb, N. (2018), The Autism Diagnosis Crisis: Research from Rt Hon Norman Lamb MP and the All Part Parliamentary Group on Autism Uncovers Stark Regional Variation and Long Waits for Autism Diagnosis, London, UK.

Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A. and Skuse, D. (2012), “Sex differences in Autism Spectrum Disorder: evidence from a large sample of children and adolescents”, Journal of Autism & Developmental Disorders, Vol. 42 No. 7, pp. 1304–

McManus, S., Bebbington, P., Jenkins, R. and Brugha, T. (2016), Mental Health and Wellbeing in England: Adult Psychiatric Morbidity Survey 2014, Leeds, UK, available at: https://files.digital.nhs.uk/pdf/q/3/mental_health_and_wellbeing_in_england_full_report.pdf.

McManus, S., Meltzer, H., Brugha, T., Bebbington, P. and Jenkins, R. (2009), Adult Psychiatric Morbidity in England, 2007: Results of a Household Survey, Leeds, UK.

Ministry of Justice (2021), Review of Neurodiversity in the Criminal Justice System. https://www.justiceinspectorates.gov.uk/cjji/wp-content/uploads/sites/2/2021/07/Neurodiversity-evidence-review-web-2021.pdf

Ministry of Justice (2022), Not just another brick in the wall ;https://publications.parliament.uk/pa/cm5803/cmselect/cmeduc/56/report.html

Missiuna, C., Moll, S., Law, M., King, S. and King, G. (2006), “Mysteries and mazes: parents’ experiences of children with developmental coordination disorder.”, Canadian Journal of Occupational Therapy, Vol. 73 No. 1, pp. 7–17.

Miyasaka, M., Kajimura, S. and Nomura, M. (2018), “Biases in understanding Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorder in Japan”, Frontiers Research Foundation Frontiers in psychology, 2018, Vol.9, p.244-244, Article 244

Prasad V, Rezel-Potts E, White P, Downs J, Boddy N, Sayal K, Sonuga-Barke E. (2023),

Use of healthcare services before diagnosis of attention-deficit/hyperactivity disorder: a population-based matched case-control study. Arch Dis Child. 2023 Oct 30:archdischild-2023-325637. Doi:

Ross, C. (2018), “NHS Grampian accused of ‘shocking’ discrimination against adults with ADHD”, The Press and Journal, available at: https://www.pressandjournal.co.uk/fp/news/aberdeen/1512913/nhs-grampian-accused-of-shocking-discrimination-against-adults-with-adhd/

Ruchika, G., et al (2021) ; Mania symptoms in a Swedish longitudinal population study: The roles of childhood trauma and neurodevelopmental disorders. Journal of affective disorders, 2021, Vol.280 (Part A), p.450

Rucklidge, J.J. (2010), “Gender differences in Attention-Deficit/Hyperactivity Disorder”, The Psychiatric Clinics of North America, Vol. 33 No. 2, pp. 357–373.

Sedgewick, F., Hill, V., Yates, R. and Pickering, L. (2016), “Gender Differences in the Social Motivation and Friendship Experiences of Autistic and Non-autistic Adolescents”, Journal of Autism and Developmental Disorders, Springer US, Vol. 46 No. 4, pp. 1297–1306.

Sofronoff, K., Dark, E. and Stone, V. (2011), “Social vulnerability and bullying in children with Asperger syndrome”, Autism, Vol. 15 No. 3, pp. 355–372.

Smith, J ; Kirby, A (2006), “Identification and Implication of Specific Learning Difficulties in a Prison Population,” Forensic Update 84 : 15–19.

Smythe,I and Everatt, J. (2002) “Checklist for Adults with Dyslexia,” in The Dyslexia Handbook, ed. Mike Johnson and Lindsay Peer (London, UK: British Dyslexia Association, 2002).

Sprafkin, J., Gadow, K.D., Weiss, M.D., Schneider, J. and Nolan, E.E. (2007), “Psychiatric comorbidity in ADHD symptom subtypes in clinic and community adults”, Journal of Attention Disorders, Vol. 11 No. 2, pp. 114–124.

WHO. (1993), The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines, World Health Organisation, Geneva.

Wieland, J. and Zitman, F.G. (2016), “It is time to bring borderline intellectual functioning back into the main fold of classification systems”, Transactions of the Korean Institute of Electrical Engineers, Vol. 40 No. 4, pp. 204–206.

Van Wijngaarden-Cremers, P.J.M., Van Eeten, E., Groen, W.B., Van Deurzen, P.A., Oosterling, I.J. and Van Der Gaag, R.J. (2014), “Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis”, Journal of Autism & Developmental Disorders, Vol. 44 No. 3, pp. 627–635.

Wilens, T.E., Martelon, M., Joshi, G., Bateman, C., Fried, R., Petty, C. and Biederman, J. (2011), “Does ADHD predict substance use disorders? A 10-year follow-up study of young adults with ADHD”, Journal of the American Academy of Child & Adolescent Psychiatry, Vol. 50 No. 6, pp. 543–553.

Yang, L.-Y., Huang, C.-C., Chiu, W.-T., Huang, L.-T., Lo, W.-C. and Wang, J.-Y. (2016), “Association of traumatic brain injury in childhood and attention-deficit/hyperactivity disorder: a population-based study”, Pediatric Research, Vol. 80 No. 3, pp. 356–362.

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Case Studies

Case study: Jan

Jan is 19, she has just started her life at university away from her family.

She is studying Engineering, and her ambition is to be a Civil Engineer. Whilst this is an exciting time, she finds new places, new people, and new demands on her very stressful because of some of her Autism Spectrum traits, and DCD/dyspraxia traits. She has challenges with planning and organising herself and her work such as planning meals, getting to lectures on time, planning out work so she finishes it to time. When she becomes anxious and worries this makes it harder for her to focus and prioritise what she needs to do.

At home her parents were very supportive and helped her plan her day and her week. By talking through what was needed she was able to deliver her work in school to a very high standard. At school she also had two very good friends and she tended to socialise with them She loved going to the cinema and playing computer games with them. The support and scaffolding her parents gave her enabled her to show her potential and this enabled her to gain excellent exam marks. Without this assistance Jan could have not even passed an exam. The differences could have been stark for her future career prospects.

Because Jan was not disruptive at school and always tried to be very helpful the teachers had not seen that she was like a swan waggling under the water but looking OK on top.

Her parents saw this at home when she could be distressed if she had not been able to cope with something in school. Her dyspraxia traits mean she always finds it hard to write at speed and this has the double disadvantage of not being able to read her notes when she comes home and then having to read the information from books and make additional notes. This is effortful and exhausting when she is always feeling tired from the efforts of social engagement in school.

At home in her familiar surroundings, her parents provide her with a sounding board, and she can air concerns and gain support. Her parents are often helping her by doing the washing of clothes, preparing meals and helping plan her finances.

Without that support, she is now finding the increase in executive functioning demands such as organising herself, planning her assignments and her social life is really demanding. Things are beginning to pile up for her. She is not sleeping so well and she is now worried about how she is going to cope with everything and when her exams start as well.

Starting off at university focusing on what are the new areas of greatest concern will make a difference to her succeeding in the first few weeks and months and being able to articulate to others what she needs. By using Profiler, she can articulate her needs to others in a format they can understand. This information can be shared (with her permission) to lecturers and tutors so adjustments can be made. Study skills support can be put in place that is tailored to her needs. If there are support groups in the university, she can be signposted to meet other students who may be having similar experiences and so they can share their ideas of what has helped them and form a support network.

What she needs are:

  • Understanding of her strengths and specific challenges.
  • An individualised support plan.
  • Information she can share with others so that practical support can easily be implemented.
  • Tools to help her cope day- to- day.
  • Assistance to understand how to maximise her wellbeing.
  • Her parents feeling confident she is gaining the support she needs to continue to be successful.
  • Supportive community.

 

Case study 2: Alex

Alex is 22 years old. He has ADHD and Dyscalculia traits. This means for them that working how long to get somewhere is often difficult meaning they are late or very early meeting friends or getting to work. Working out how much they have spent and have still got to spend is harder for them. They still work out sums on their fingers.

Because of impulsive purchases and actions, they are now in debt too. They find working out what is urgent difficult sometimes and can end up focusing on something that they have become interested in but then lose interest and move onto something else. They have found holding down a job difficult.

In school they did not get the support he needed to help with organisational skills, help with focusing and with maths. The one thing they loved to do was play their guitar and they were in a band with some others for a while. Their guitar is still the one thing they cherish. They moved away from home at 16 years of age because their parents did not really understand their decisions in terms of their identity. This has meant they have found it hard to ask for help from then despite them offering that they could come home for a bit to help get sorted and want to mend the relationship.

Alex is sofa-surfing on a friend’s sofa which means they must pack up their belongings every morning. They feel very anxious all the time worrying about the future and where they will be sleeping if they must move on. They have problems with debts and are not sure how to sort that out as well.

Help with housing, with finances and some careers guidance so they can try and get some stable employment as well would make a difference to them, as well as helping them to re-engage with their family.

 

Case Study 3: Tom

Tom is 19 years old. He left school at 16 years old and has not attended school consistently since he was 11 years old. His literacy levels are low because he has missed a lot of school and he thinks he may be dyslexic. His Dad told him he could never read very well as well. His father has been in and out of prison most of his growing up.

Tom was excluded from school five times and has been to four different schools. He is care experienced and has been in three different foster homes. This happened when his Mum was finding it harder to cope with his two other younger siblings and had become depressed.

He can be impulsive and has ended up making quick decisions and socialising with people who have encouraged him to make some wrong decisions that have landed him in trouble.

Tom is now in a crisis situation. He is going to court because he had stolen food items from a shop because he did not have enough money for food as he owed someone. He got caught.. He is very remorseful.

He recently was pleased that he got a job helping working in a local garage and has been staying in a hostel but he is worried about losing his job and the place at the hostel now. He has started to self harm and become more agitated because he is trying to avoid drinking alcohol and using marijuana.

Tom is also finding it very hard to read and complete the paperwork for court. He forgot to send back a document in time and did not turn up in court when he was supposed to.He does not want to go to prison but is worried this may happen because of these mistakes he has made.

He needs support and help with planning and organisation and consideration of his present situation.

 

Case Study: Sara

Sara is 35 years old.

She is working in an office in an organisation designing clothing with an ethical focus. She is part of the team working in business administration and has a variety of tasks. Her key challenges are reading information at speed such as documents in a meeting , and with her spelling ( but uses a spell checker). She also struggles to fit in with her team and can find the noise and banter at work very stressful for her. They are a sociable team but she is exhausted at the end of the working day and needs to commute for an hour to get home. She doesn’t usually choose to go out socially with them and this seems to be a problem for her team as someone recently made a comment that she isn’t very friendly or a team player!

When Sara is shown what she needs to do she is much better but often finds people are too busy to do that and she then makes mistakes. She has lost confidence in herself and is up for a performance review. She is worried she will lose her job. She is now not sleeping well and her anxiety and lack of sleep has resulted in her being late for work and missing some work deadlines compounding the problems she was already having.

Sara also has a 7 year child who is also having difficulties in school and has recently been sent home from school because she was told they had hit another child. Her child says that the other child was laughing at them because they couldn’t kick a ball properly. Sara thinks they are quite like them in many ways. Increased after school child care costs are also putting pressure on her and her partner in juggling work and home life.

Sara needs help with work strategies and also with managing home/work balance, her sleep difficulties and gaining support and understanding of her child.

Want to know more?

To find out more information, please contact our team today.

Awards and accreditations

Neurodiversity Aware Barclays Entrepreneur Awards 2019 Disability Confident Cyber Essentials Plus Inclusive Companies Awards CPD Member Inclusive Tech Alliance Armed Forces Covenant