In recent years we have seen an increase in mental health problems and long waits for diagnosis. Last year, the previous Secretary of State for Health, Wes Streeting, called for an independent review because of concerns about ‘overdiagnosis’.
Prof Fonagy, who led the review, has now said this view is ‘completely wrong’. In fact, the review found that there is a genuine increase in levels of distress amongst all age groups and that the level of diagnosis of neurodevelopmental conditions has reached the level of prevalence. It isn’t true that large numbers of people are being diagnosed who shouldn’t be, and this narrative distracts from providing the real change that is desperately needed.
The review also states there are not enough services and they are too fragmented to provide effective support. It has a list of recommendations which, if implemented, it hopes will be a generational opportunity for children and young people in particular.
Mental health and neurodevelopmental services need to be integrated, and people need to be provided with the right support earlier – whether or not they have a formal diagnosis.
What does this mean for PDA adults and young people?
If the recommendations in the review are fully implemented, this should lead to better support and care. It takes time to shift current practice, but the recognition that people with lived experience have a vital role in designing services is encouraging.
For systems to be truly ‘needs-led’, we can’t just focus on surface-level behaviours which are often misunderstood. Professionals must have a deeper understanding of how neurodivergence can present, and the expertise to unpick PDAers underlying needs.
As PDA can easily be missed or misdiagnosed, we need to build this understanding and expertise at all levels; through education, social care, health and the criminal justice system. It’s critical that all professionals can identify a PDA profile (regardless of terminology) and can implement non-confrontational, collaborative support approaches.
We hope that these words from the review come to be fully accepted:
“The Government should reduce avoidable distress and improve well-being while ensuring that children are not left to adapt to systems and environments that create or compound their difficulties. Neurodevelopmental difference is not a problem to be eliminated. The challenge is to create the conditions in which children, young people and adults are understood, supported, treated where treatment is needed and able to learn, work, participate and flourish.”
We will continue to advocate for these recommendations to be fully adopted, ensuring environments adapt to support PDAers rather than expecting PDAers to bend to unsuitable systems.