Why Most Autism Assessment Pathways Are Failing Patients And How to Fix Them
Dr Niruban Ratnarajah sees the same story too often in general practice.
“A parent sits across from me, exhausted and frustrated, going back and forth with school and health services, looking for a diagnosis that might finally explain the challenges their child is facing at home, in the classroom and with friends,” he says.
“Or it is an adult in their thirties, finally seeking answers after a lifetime of feeling different.”
For Dr Ratnarajah, a GP with a specialist interest in neurodiversity and Clinical Director at Neurodivergems, these consultations are not exceptional. They are part of a much wider challenge in how autism and neurodiversity assessments are funded, structured and delivered.
Waiting Lists Are Only Part of the Problem
The most visible barrier to autism diagnosis is the waiting list. NHS England statistics show significant demand for autism assessments, with hundreds of thousands of people waiting for referrals and many waiting longer than recommended timescales.
However, according to Dr Ratnarajah, the real issue extends beyond waiting times.
“Neurodiversity assessments can become a box-ticking exercise rather than a clinical and therapeutic process,” he explains.
When services are under pressure, the focus can shift towards achieving a diagnosis quickly rather than ensuring patients receive meaningful understanding and support. While this may help services manage demand, it can leave individuals and families without the guidance they need after receiving a diagnosis.
Diagnosis Should Be the Beginning, Not the End
A diagnosis should provide more than a label.
“Diagnosis can't just be a classification,” says Dr Ratnarajah. “It is the beginning of a person's ability to understand themselves, often after years of waiting.”
Research into adult autism diagnosis has highlighted ongoing gaps in post-diagnostic support, including difficulties accessing services, psychoeducation and follow-up care. For many people, receiving a diagnosis is only the first step in understanding their needs and accessing appropriate support.
For children and families, the consequences of poor assessment experiences can be significant. A rushed assessment or unclear feedback can make it harder for parents to secure educational support, reasonable adjustments and appropriate care.
“An assessment and a diagnostic label alone do not save time,” says Dr Ratnarajah. “It simply creates more work further down the line.”
What Good Autism Assessments Should Include
Dr Ratnarajah believes that high-quality autism assessments should be viewed as a process rather than a single appointment.
This process should include:
Comprehensive pre-assessment information gathering
Detailed developmental histories
School reports and educational information
Previous healthcare records
Input from parents, carers, partners or others who know the individual well
Observation also requires context.
“A formal clinical setting may not reflect how someone presents in daily life,” he says. “Clinicians need to understand what they are observing, why they are observing it, and what may be masked in that environment.”
The Importance of Individualised Assessment
Dr Ratnarajah argues that co-occurring conditions should be assessed as standard practice rather than treated as optional extras.
He also stresses the importance of recognising the impact of gender, ethnicity and cultural background during assessments.
“Diagnostic instruments were not designed to be culturally neutral,” he says. “Treating them as though they are produces biased results.”
A one-size-fits-all approach risks overlooking important factors that influence how autism presents in different individuals.
Meaningful Feedback Matters
The final stage of the assessment process is just as important as the assessment itself.
Patients should be given sufficient time to understand what has been identified, how it relates to their experiences and what support options are available. Parents and carers should receive the same clarity when a child is assessed.
“A good report should not simply say whether someone meets diagnostic criteria,” says Dr Ratnarajah.
“It should explain what was observed, how that maps to the criteria, what else was considered and what practical individualised recommendations follow.”
Creating Better Outcomes
For Dr Ratnarajah, these elements are not optional extras but the foundation of ethical, effective diagnostic practice.
“People are not waiting years for a tick-box outcome,” he says. “They are waiting for understanding. If assessment does not give them that, then the system has failed them twice.”