Keynote 6: Diagnosis of Women and Girls on the Autism Spectrum

There is an increasing awareness that we are missing girls and women on the autism spectrum and the assumption has been that there are more boys and men with autism or Asperger Syndrome.  There is a need to consider the extent to which females on the autism spectrum present differently from males and to explore the possible gender differences in autism.  This has implications for the systems, instruments and processes used for diagnosis and the type of interventions offered.

Examples are given of how the behavioural manifestations in the women and girls can differ from the males.  The current International Diagnostic criteria do not give examples of the types of difficulties experienced by girls and women.  In order to recognise the different behavioural manifestations, it is important to take a much wider perspective regarding the social, communication and imagination dimensions in addition to the special interests and rigidity of behaviour.  It is only by asking the right questions, taking a developmental history and observing the person in different settings that it becomes clear that the individual has adopted a social role which is based on intellect rather than intuition.

The difficulties in the diagnosis of girls and women arise if clinicians continue to use the narrow definitions set out in the International Classification Systems.  Proper assessment takes time and detailed evaluation is necessary to enable a clinician to systematically collect information which not only provides a diagnostic label but more importantly a detailed profile of the person.

Many autistic women and girls are not being diagnosed and are therefore not receiving the help and support needed. A timely diagnosis can avoid many of the difficulties women and girls on the spectrum experience throughout their lives.

Judith Gould, Dr, BSc, MPhil, PhD, AFBPsS, CPsychol, Consultant Clinical Psychologist

Judith Gould, is the Lead Consultant at The NAS Lorna Wing Centre for Autism and retired as Director of the Centre in 2015. She is a Chartered Consultant Clinical Psychologist, with over 40 years’ experience, specialising in autism spectrum disorders and learning disabilities.

Before being the Director of The Lorna Wing Centre she worked as a member of the scientific staff of the Medical Research Council Social Psychiatry Unit and was a Senior Lecturer at the Institute of Psychiatry, University of London. She has also worked as a Clinical Psychologist within both health and social services. She has published widely in the field of autism spectrum disorders. Her current interest is the diagnosis of women and girls in the spectrum.

Lorna Wing and Judith Gould’s early work in the 1970s on the epidemiology of autism and related conditions, led to the concept of a spectrum of autistic conditions.

Judith Gould together with Lorna Wing set up The Centre for Social and Communication Disorders, (now The NAS Lorna Wing Centre for Autism) which was the first service in the UK to provide a complete diagnostic, assessment and advice service for children, adolescents and adults with social and communication disorders. 

In addition to setting up the Centre as a model for diagnosing autism spectrum disorders the Centre’s team offers training to professionals in their methods of diagnosis and assessment of needs. Lorna Wing and Judith Gould developed an interview schedule called the Diagnostic Interview for Social and Communication Disorders (DISCO) to be used as part of the diagnostic process. This schedule enables the professional to use a dimensional approach when making a diagnosis which is more helpful than diagnostic sub-grouping when planning treatment, education and care. This approach bests fits the new DSM 5 Diagnostic Classification System. The DISCO is widely used throughout the UK and overseas and training in its use is carried out both at the Centre and internationally.