Posted on June 23, 2026 in Author insights with tags
Neurodevelopmental disabilities (NDDs) are now a major focus in pediatrics, and an increasing concern in adult medicine. In our book, Caring for Children with Neurodevelopmental Disabilities: Stories from a Pediatric Practice, Erika Cloodt and I aimed at providing an opportunity for reflection on the field, education of the public, and teaching of professionals through living clinical experience of dealing with the many challenges we face.1,2
We hope that the stories may also stimulate reflection on broader issues concerning NDD clinical practice and accuracy of data about prevalence. Some of the issues that need to be identified and better understood by both the public and the professional are discussed below.
NDD labels (especially autism spectrum disorder and attention-deficit/hyperactivity disorder [ADHD]) are sometimes used to describe behavior perceived as ‘different’.3 We frequently hear comments such as, ‘Your kid is so active and must have ADHD’. ‘Only an autistic kid could do math but does not speak’. ‘I can’t concentrate, just like someone with ADHD, and need some pills’. Derogatory use of NDD diagnoses can also be noted frequently.
Public and professional understanding of NDD diagnoses may focus on observed behavior without sufficient attention to other aspects.
How NDDs are recognized, assessed, and managed across different medical specialties (e.g. pediatrics, neurology, psychiatry) may affect consistency of care for the child, and relationships with parents.
Diagnoses may be made by professionals through observation and history only without using established criteria such as the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) or other sources with such criteria.
Professionals may be willing to accept expanded definitions of NDDs diagnoses (‘Doesn’t he seem to fit into autism?’) to meet the needs of the family.
Advocacy for a specific NDD diagnosis, needed services, and legislation, can be based on inaccurate NDD data, and adversely influence care.
Professionals may accept parental requests that an NDD diagnosis be given to obtain additional school time, special education, and therapy services.
Unproven or inappropriate therapies are increasingly available and are used
especially when a definite medical diagnosis has not been obtained.
Increasing public awareness of NDDs has also contributed to adult self-identification
with NDD diagnoses and self-medication, raising questions about adult access to assessment, support, and safe medical guidance.
While these issues have been recognized over years of clinical observation, there is no data that can explain, for example, the language and cultural impact of NDDs, or specifically
confirm validity, frequency, or modify these findings. It is essential that priority be given to
developing relevant studies that will make this possible.
Epidemiology of NDDs, particularly prevalence, is greatly impacted by some of these
findings, especially if currently available data are being used. Review of the above issues
noted over years of practice reveals variables that are usually not reported and could have
a great bearing on frequency of diagnoses or any other NDD data.
Finally, an additional dimension of the NDD stories in Caring for Children with Neurodevelopmental Disabilities is to stimulate a better understanding of these diagnoses and management, promote appropriate education of the public, and support continued education for professionals who practice in this challenging field.
Alfred L Scherzer
Clinical Professor Emeritus of Pediatrics, Weill Cornell Medical College, New York, NY, USA; Past President, American Academy for Cerebral Palsy and Developmental Medicine (AACPDM).
Caring for Children with Neurodevelopmental Disabilities: Stories from a Pediatric Practice is available in paperback and as an ebook.
REFERENCES
1. Scherzer A, Cloodt E. Caring for Children with Neurodevelopmental Disabilities: Stories from a Pediatric Practice. London: Mac Keith Press, 2025.
2. Moulton T. Book Review: Scherzer A, Cloodt E. Caring for Children with Neurodevelopmental Disabilities: Stories from a Pediatric Practice. Dev Med Child Neurol. 2026, 68: 869.
3. Scherzer A. Medicalization and being ‘different’. Dev Med Child Neurol. 2023. 65: 437.
