Moving beyond diagnosis and embracing neurodiversity

It’s the space between the bars that holds the tiger, and it’s the silence between the notes that makes the music. - Zen Proverb

In this series, I have argued how important it is to embrace neurodiversity and to recognise that people think, feel, communicate and experience the world in vastly different ways. There are many different “brain wirings” and neurotypes, and developing empathy and understanding of these differences is the basis of good relationships in the family and wider community.

In this series we have also emphasised how people who are neurodivergent (ND) or who have non-typical neurotypes often experience misunderstanding and judgment as well as higher levels of stress living in a world that does not meet their needs in the same way as others.

Awareness and increasing diagnosis

In recent years, there has been a large increase in the formal diagnosis of autism, ADHD and other neurodivergent conditions. This has represented a much-welcomed increased sensitivity to the diverse needs of ND people.

For parents of neurodivergent children, a formal assessment can bring a positive framework to compassionately understand their children and to seek practical support in the right places as needed. Parenting ND children can be a very different experience, and parents are called to take a more creative, curious and flexible approach based on accepting and embracing differences.

Within a strengths-based paradigm, the identity of being autistic or having ADHD can provide people with helpful self-knowledge and facilitate them to access understanding and support in a wider community of people with similar lived experience. This can help them to reach self-acceptance and avoid viewing themselves as “flawed” or having moral deficits or feeling that they need to be “fixed” to fit in with neurotypical society. Such acceptance can help prevent unnecessary feelings of shame, anxiety and depression, and allow people to live authentically with better self-esteem.

Also, good assessments of neurodivergence can lead to better access to neuro-affirming therapies and other supports that meet individual needs. For example, an ADHD diagnosis is essential to accessing appropriate medication and can help in creating an individual education plan in school and in accessing learning and exam supports.

Series on neurodiversity and the family

Autism is a recognised disability in the workplace which means a person can seek reasonable accommodations from their employer to meet their needs.

The problems with diagnoses

While early identification of different neurotypes is really important, formal diagnosis is a complex process with many dilemmas and challenges that need to be considered.

1) Autism and ADHD diagnoses evolved as labels of pathology and impairment. Currently, the most used diagnostic manual (DSM-V), identifies them as disorders, to be treated or managed.

While in recent years the neurodiversity-affirming movement has done much to “rescue” these labels from excessive pathology highlighting the strengths of different neurotypes, a sense of “disorder” lingers in their identities.

Even the word “diagnosis” is in the medical realm, implying a “disease” that needs to be “cured”, when assessment should ideally be focused on the positive “identification” of different neurotypes and conditions.

2) Diagnostic labels often don’t explain an individual’s needs. Many people meet the criteria for multiple diagnoses at the same time, and none of the diagnoses fully explain their range of needs or identify their unique personality or their strengths which help them manage their challenges. Often, siblings will have the same formal diagnosis, but what actually helps and supports them through life can be very different.

Rather than criticising a child who ‘becomes obsessed’ or ‘talks too much’ about certain subjects, you can appreciate their deep learning ability and the joy it brings them when sharing their passion

A person might receive a diagnosis of dyslexia and think that this sums them up, when they might have needs in other areas as well (such as inattentive ADHD or sensory needs). As a result, they might still feel misunderstood and blame themselves for their difficulties, and not seek support from the right services.

Additionally, you might have an autistic child who has complex needs and a significant learning difficulty. Their high level of need is not explained by a simple diagnosis, and a support plan needs to be built around their unique needs.

3) The process of ND diagnosis can be overly expert-centred. A professional conducts an assessment and provides a diagnosis which has big implications for a person’s identity.

[ ‘Would it help my son if I got an ADHD diagnosis too?’Opens in new window ]

From a neurodiversity-affirming perspective, this process should be much more exploratory and collaborative and linked to supporting an individual’s needs. For example, many teenagers do not want a definitive diagnosis, and prefer to be practically supported in managing their specific needs. For these teenagers, it is important to go at their pace and to encourage a process of exploration and self-acceptance.

A teenager I worked with did not want to proceed with a recommended autism assessment, and her diagnosis of dyslexia was sufficient to get her support in school. Once she attended university and felt more supported in her peer group, she then completed a collaborative autism assessment so she could further understand and advocate for her needs.

In other families, young people who might benefit from an autism assessment are not supported to access this. Often, they are better informed than their parents about what being neurodivergent means and can feel invalidated when their parents don’t listen or are critical about their desire to seek assessment. Parents need to better listen to their young people and to support their journey of self-knowledge and self-advocacy.

Focusing on needs and strengths

A report just published in the UK on ADHD and autism (Independent review into mental health conditions, ADHD and autism), was critical of the NHS mental health system that made diagnosis central, rather than addressing the needs of patients.

They argued that “support should be available according to a person’s needs before, during and after assessment, and not be withheld while waiting for a diagnosis”. While diagnosis can be important, it can also do harm when it is inaccurate or when it “obscures co-occurring conditions” or when “a diagnostic label defines a person by their difficulties rather than by their strengths, circumstances and potential”.

Shifting to mental health support that is needs-led and strengths-based is about moving from simply diagnosing pathology to identifying inherent strengths and addressing underlying needs.

Embracing neurodiversity is about recognising that people thrive best when they are free to be their authentic selves

For example, rather than simply describing a child as “impulsive” or “hyperactive”, you can appreciate their strengths inherent in these qualities such as a “willingness to try new things” or their “high energy, drive or enthusiasm”. Then you can identify underlying needs such as how high-energy physical activities during the day help them regulate and relax, or how they learn best when experimenting and trying out new things, or how they might need extra support to self-organise or plan activities.

[ New sensory and therapy centre for neurodivergent children set to open in DublinOpens in new window ]

Rather than simply seeing a child as “oppositional” or that “they won’t do what they are told”, you can understand the strong need for autonomy that underpins this behaviour and take time to support them to set goals and make their own choices where possible. You can also appreciate the sense of justice and intrinsic motivation that underpins this quality and see the strength in their ability to think and act independently.

Rather than criticising a child who “becomes obsessed” or “talks too much” about certain subjects, you can appreciate their deep learning ability and the joy it brings them when sharing their passion. Then you can meet their needs and provide them with opportunities to learn more and connect with like-minded peers and communities.

Beyond diagnosis/embracing neurodiversity

While diagnosis is important, we want to avoid narrowly defining people in pathological categories. Our understanding of the human psyche is constantly evolving, and the best language to describe the inner human experience continually changes. This is especially important in providing mental health and practical support where we need a “fundamental shift from a diagnosis-dependent system to a needs-led plus diagnosis system”.

In an ideal world, the identification of different neurotypes would not have to involve formal diagnosis, and be largely a collaborative process of self-identification. People would be encouraged to explore their individual way of expression, and diverse ways of being would be accommodated and respected in society.

The provision of services would be according to the individual’s level of need, which could change over time rather than being fixed. Importantly, we need to find better ways to support neurodivergent children and adults whose needs are often misunderstood and who experience higher levels of stress in society.

Embracing neurodiversity is about recognising that people thrive best when they are free to be their authentic selves. This means accepting the many ways people communicate, learn, and express themselves. When societal expectations become rigid and conformity is emphasised over individuality, our collective mental health and wellbeing deteriorates.

Much like biodiversity in nature, human society is at its strongest when there are many different “niches” for people to occupy and when many different ways of being are encouraged. A biodiverse ecology consisting of multiple interdependent species is much more resilient, healthy and rich than a monoculture of one or two dominant species. In a society that embraces neurodiversity, there are many different ways to be happy and many different ways to contribute. This is of great benefit to everyone.

• This article is part four of a four-part series on neurodiversity and Families. See all articles here
• John Sharry is clinical director of the Parents Plus Charity and an adjunct professor at the UCD School of Psychology. He is running a workshop on Motivating ADHD Children on November 4^th and a Parenting Exceptional Children course starting on November 10^th. See solutiontalk.ie