By Dr Emilie Moorhead
The concept of Autism is not new, it has been 80 years now since Leo Kanner first coined the term ‘early infantile autism’. Since then Autism diagnoses have rocketed, with current prevalence rates cited between 1% and 3% of the population 1. 2. With a UK population of over 67 million people at present, that equates to between 670,000 and 2,010,000 people in the UK alone.
However, despite this, support for this population of people remains sparce. Currently most NHS Autism/ Neurodiversity services focus solely on diagnostic assessments themselves. There is very little provision for post-diagnostic support. Whilst it is understood that there is a big demand for assessments, with a long backlog of people waiting to be assessed who need to be seen, what happens to these people once they are diagnosed?
The term ‘Neurodiversity3’ was introduced by Australian socialist Judy Singer in 1995. It refers to the idea that neurological differences are a natural part of human existence, ones that should be acknowledged and celebrated. Neurodiversity encompasses many life-long descriptors including Autism, ADHD and dyslexia. The development of neurodiversity as a concept has helped to move thinking away from traditional ideas that considered these conditions as a ‘disorder’, with ‘deficits’ that need to be changed. Instead neurodiversity-affirming ideation has allowed us to start to see the strengths in these conditions, which are simply a different ways of thinking and interacting with people. This progression has helped to reduce a lot of the stigma association with neurodiversity.
Neurodiversity is often associated with Mental Health Services
One of the biggest challenges with neurodiversity is that it is currently associated with Mental Health Services. Often you can only access an assessment through CAMHS (Child and Adolescent Mental Health services) themselves, unless you have a private assessment. This immediately groups neurodiversity with other mental health conditions or ‘disorders’ which need to be treated. Is this connection affecting a person with Autism’s ability to develop a positive self-identity on which to understand their neurodiversity?
It is acknowledged that there are some benefits to accessing support through CAMHS, after all a significant majority of people with neurodiversity also have co-morbid mental health problems.4,5. It therefore makes sense that they can access support for both aspects of their wellbeing at the same time. Indeed, many children might only have their neurodiversity identified following input from CAMHS clinicians. It is also important that neurodiversity remains ‘everyone’s business’, and that all mental health professionals are able to identify and assess for neurodiversity so that it does not get missed. Equally, given the high prevalence of mental health co-morbidity, professionals need to be feel confident at working with people who are neurodiverse and to make appropriate adaptations to mental health interventions to facilitate this. Thereafter, however, should the connection to Mental Health end? Would it be helpful for people with neurodiversity to access separate support services instead?
To be clear, I’m not saying that people with Autism shouldn’t access Mental Health services. If they have a co-morbid mental health condition that needs support then absolutely, it is right that they seek this support form CAMHS. However, they should only do so to get support for that mental health condition, and not for their Autism per se.
Neurodiversity is not a disorder
Autism is not a Mental Health condition. There are no National Guidelines for Clinical Excellence (NICE) on how to ‘treat’ or intervene’ with Autism, as rightly that is not the goal of the work. Neither should Autism be considered a Disorder.
However, currently both diagnostic criteria used in the assessment of autism, DSM-V and ICD-10, use the term Autism Spectrum Disorder. The word ‘disorder’ can be defined as a ‘disruption from normal functioning’ or a ‘confused state or condition6’. It can be seen by society as a negative trait that is synonymous with being ‘abnormal.’ It has to be questioned what impact the term ‘disorder’ has in people’s perceptions about this condition, and consequently themselves? How helpful is it to use this definition for something that is ascribed to a lifelong condition? By continuing to associate Neurodiversity with Mental Health services, it perpetuates the idea that they are conditions that need to be ‘fixed’ or ‘changed’. Instead support for neurodiversity should be geared towards understanding and acceptance around how to manage this condition with a view to helping people to thrive.
Bio-psycho social approach
Support for neurodiversity needs to be provided in a holistic manner encompassing among others: the child/young person, their parents/carers AND their teachers. It is important that any interventions to support people with neurodiversity do not focus solely on the child or make them feel that they are the ones who need to change in any way. In reality, a lot of support can be achieved by ensuring that the optimal environment is established around the child. This would include factors such as optimising the sensory environment to meet their needs; additional support to manage change and transitions and more explicit support to help them to learn to manage their emotions effectively. Whilst some of these aspects can be achieved through a CAMHS service, is it possible for them to work with all of the people necessary to achieve this? For instance, do CAMHS staff have the necessary capacity for more intensive collaboration/training at schools?
Transition to adult services
There is also an unnatural divide in services at present which can cause more difficulties. Child services run up until the age of 18, whereafter adult services take over. However, there is very limited collaboration between these two services. If a young person is referred to child services for an assessment at the age of 15, it is entirely possible that they are still waiting to be assessed by the time they turn 18 and are discharged. If there is no collaboration between services then the now adult has no choice to start the assessment process all over again, potentially waiting another three years from scratch until they can be seen. Surely there is a better system that could be established?
Post-diagnostic support is limited
Furthermore, within the CAMHS services, there is limited post diagnostic or ongoing support. If people are lucky, they may be offered some brief post-diagnostic support workshops to help them. These workshops are usually targeted towards their parents and discuss what Autism is, how it impacts people and ways to manage challenges that occur. Parents report really valuing these sessions, and have commented that they make sense of why more traditional parenting techniques have not succeeded. However, what happens after these few sessions end? Parents are often given leaflets and signposted to places such as the National Autistic Society and their support comes to a close. Can a few brief sessions really be sufficient to help parents to support their children through the many transitions and social situations that they are likely to encounter in life?
What about the young person themselves? Having worked in assessment services, I know that there is very little conversation that happens with the individual to explain their diagnosis. For some they are too young to understand and these conversations happen with their parent instead. For other children they struggle to engage with professionals, especially ones from the assessment team whom they may have only met a few times at best. As a result, they may opt not to be involved in conversations about the diagnosis. Moreover, some feel that nothing has actually changed so why do they need to learn about something that has always been there?
What gets missed is an opportunity to talk with other people in a similar situation. To normalise their condition, and realise that they are not alone. They don’t have the chance to think about what it is like for a person who is neurotypical. Not so that they can be more like them, but instead so that they can start to understand that there are different perspectives and that this may be why they find certain situations difficult. Typically children are reliant on their parents to explain their neurodiversity to them; parents whom are only just learning about this themselves.
When is the right time to access post diagnostic support?
There is also the question of timing. Some people, children included, will want to know lots about their diagnosis when they are first diagnosed. Others will say that nothing has changed for them, they have always had these traits and therefore there is nothing new, so they do not need to access any additional support. Everyone is different. For some people it may only be when something changes, a transition or life event that they want to know more and learn ways to overcome any challenges that they may be facing. This may not even occur until adulthood. However, in assessment services time is not a luxury that they are able to afford. At best families may be given a few weeks, or a month after the assessment to ask questions, then that person is closed to the assessment service. There is no follow-up and given that by this point they will already have their diagnosis, there is also no return to ‘an assessment only provision’. So what happens to the person who wants to understand more about their condition and ways to manage it? Who do they turn to?
This is where children’s services fall short. CAMHS focus is on mental health difficulties, and Neurodiversity services focus mainly on assessments. Who provides ongoing or repeat support when it is needed?
Self-identity
The aspect of neurodiversity that gets overlooked by current services relates to people’s chance to understand their self-identity. Self-identify is defined by Oxford Languages as: ‘the perception or recognition of one's characteristics as a particular individual, especially in relation to social context7.’ Self-identity is crucial in anyone, but more so within people with neurodiversity, where people often spent the initial years of their life pre-assessment wondering why they are different or do not fit in.
However, sadly, more often than no professionals have ever sat down with a child/adult with neurodiversity and talked to them about this condition is and what it means to them. Part of this is psychoeducation, but more than that is how that person sees themselves, and their own personal beliefs associated with their neurodiversity. If they hold negative beliefs about themselves, or associate their neurodiversity with stigma and deficit, then it is little wonder that this belief may start to manifest in negative ways such as through mental health difficulties. Does this create an internal conflict within the person, that without adequate support, they are left to dwell on the deficits and disorder that they have?
I regularly teach on the Child and Young Person Improving Access to Psychological Therapies (CYP-IAPT) ASD and LD course. One of the most crucial things that I tell clinicians is that there is a need to help people with Neurodiversity understand what this is, and how it makes them see the world in a different way to other people. This is a conversation that needs to be carried out sensitively. Too much focus on deficits and people will reject the diagnosis and along with it a large part of their identify. Equally, though too much focus on strengths and award winning celebrities with Autism, and people feel like they are falling short of the mark and it’s hard to compete. Nonetheless, this conversation is crucial. If as a society we are going to invest all this time and money into assessing for neurodiversity, it needs to be done in a meaningful manner. There needs to be suitable post diagnostic work, to make this assessment helpful to the child themselves. It is crucial that the correct foundations are put in place to help them to have a proper understanding of themselves and how best to manage everyday events.
I’ve heard many influential and senior managers within the NHS state that post-diagnostic support for people with neurodiversity themselves is not the priority and is not needed. I disagree. Spending time to understand neurodiversity, whether that is from a neurotypical or a neurodiverse perspective, and how it impacts on the individual is paramount. Without this foundation in place, it is very difficult to create a positive mental wellbeing to see a person through life.
I wonder if this may even contribute to high prevalence frates of people with comorbid mental health difficulties. If you treat someone like they are disordered, give them no support or help to understand this differently, is it any surprise that so many people end up in crisis?
Conclusion
The way that we understand Neurodiversity has evolved considerably over the past few decades; moving away from the idea of deficits and disorders and instead focussing on differences to be celebrated. This move calls for a change in the way that services are provided for people with neurodiversity. Ones that helps them to acknowledge and celebrate the differences that they do have.
1) McConkey R. (2020). The rise in the numbers of pupils identified by schools with autism spectrum disorder (ASD): a comparison of the four countries in the United Kingdom. Support for Learning, 35: 132–143.
2) O’Nions, E, Petersen, I., Buckman, J.E.J., Charlton, R., Cooper, C et al. (2023). Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data. The Lancet. 29, 100626. DOI: :https://doi.org/10.1016/j.lanepe.2023.100626
3) Singer, J. (1999). "'Why can't you be normal for once in your life?' From a 'problem with no name' to the emergence of a new category of difference". In Corker M, French S (eds.). Disability Discourse. McGraw-Hill Education (UK). pp. 59–67. ISBN 978-0335202225.
4). Romero, M., Aguilar, J.M., Del-Rey-Mejías. Á., Mayoral, F., Rapado, M., Peciña, M., et al. (2016). Psychiatric comorbidities in autism spectrum disorder: a comparative study between DSM-IV-TR and DSM-5 diagnosis. Int J Clin Heal Psychol. 16:266–75. doi: 10.1016/j.ijchp.2016.03.001
5). DeFilippis, M. (2018). Depression in children and adolescents with autism spectrum disorder. Children. 5:112. doi: 10.3390/children5090112
6). Oxford Languages (2014). Oxford English Dictionary, Retrieved 23rd January, 2014, from https://languages.oup.com/research/oxford-english-dictionary/
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