THE IDENTIFICATION OF AUTISTIC ADULTS’ PERCEPTION OF THEIR OWN DIAGNOSTIC PATHWAY

Abstract

This research focuses on the perceptions of autistic adults regarding the identification/diagnosis process(es) of being autistic, with a strong element of ethical practices involved throughout the research process(es) including participatory and emancipatory components. Participants ages range from thirty nine to seventy years of age, with age of when diagnosis being conducted ranging from thirty two to sixty five years of age, and they all live in various parts of England. Eight participants were interviewed and consent to use their data was provided. Grounded Theory principles were used to carry out Thematic Analyses of the data; the findings are matrices that were formed with regards to pre-diagnosis, diagnosis and post-diagnosis. The themes tend to inter-twine, e.g. perception and identity, and discussions regarding each matrix has been carried out. The findings suggest that more ethical research that utilizes a social model ought to be carried out. Furthermore, recommendations for autistic people, researchers or/and diagnosticians have been outlined. 

Forward by Dr. Emma Goodall

As an academic, researcher and professional in the area of the autism spectrum and an autistic I was engaged with Rod Morris's writing from the first paragraph. Suitable for a wide audience, this book provides lived experience insights in a clear and well-researched manner, which would seem to prove that autistics do indeed have a theory of mind, in contrast to early research in this area. The clear descriptions of the research process and underlying methodology are interesting and give an insight into collaborative and respectful research that is based in an ideology of nothing about us without us.

Insights into the very human and powerful diagnostic journey are provided through a range of quotes and summaries of shared information. These insights will be of use to anyone thinking about seeking an autism spectrum diagnosis for themselves or a friend or family member. For adults who are in the midst of the diagnostic process, this book will provide a support and assurance that the range of feelings and reactions that can accompany this process are experienced by others and that they are not alone in their journey. The recommendations for going forward shine a light on ideas that would drive positive and supportive policy for the large autistic population going forward into the future. This section is a must read for policy makers and researchers in the areas of aging, housing, and health. Researchers seeking guidance on true co-production of research in the area of the autism spectrum would also benefit from this great example of inclusive and respectful research. 

Rod Morris captures the experiences and views of autistic adults and presents them in a respectful way that both contributes to academic and theoretical research around the autism spectrum but is also accessible to the a wider audience. This unusual book captures the attention and invites multiple readings to gain a variety of perspectives, challenge current thinking and increase understanding of the richness of autistic lives.

Forward by Manuel F. Casanova, MD

It is striking that the mechanics of diagnosing autism are often distanced from the needs of the patients receiving the diagnosis. Specialists usually base their diagnosis on behavioral evaluations. These specialists may be developmental behavioral pediatricians, psychiatrists or psychologists using different screening algorithms under varying environmental settings. In essence the approach to diagnosis is just as variable as the clinical presentations of autistic individuals. The author summarizes his views succinctly: “Is autism in and of itself, a spectrum (people on a spectrum), or is this more a reflection of a spectrum of opinion and perspective of differing professionals and schools of thought?”

Obtaining a medical diagnosis is an individual experience that is often relegated to a distant afterthought by the diagnostician. It would be an advantage, instead of classifying patients into prescribed labels, mental health professionals should take this opportunity in order to alleviate suffering. To do anything else is to dehumanize an individual by stereotyping him/her into a collective group.

Rod Morris has written an extremely useful book, based on originally sourced reference material, focusing on the diagnostic process of autism. It is a sensitive overview of a person’s belief’s and emotional state before, during, and after the diagnostic process along with a helpful discussion on how to improve the same. In doing so the book provides a source of guidance and inspiration based on personal testimonies as to a journey marked by the angst caused by self-imposed doubts (pre-diagnosis) all the way to what, under proper circumstances would be, an enlightened future (post-diagnosis). As the author states this book, “… in itself is geared towards being a piece of work that an autistic person, or someone who suspects they may be autistic, can read and feel more empowered and informed by, in terms of seeking or/and attaining a diagnosis of autism as well as hopefully what to avoid.”