Over the past several decades, our understanding of autism has undergone a remarkable transformation. Caroline Goldsmith, a consulting psychologist based in Ireland, began her training at the online university, the Open University. Now, with two further accredited Masters qualifications from the University of East London and Newman University under her belt, Ms Goldsmith has witnessed firsthand the changing concept of autism and the challenges individuals face in obtaining a diagnosis.
While our comprehension of autism has significantly improved, navigating the diagnostic process can still be a challenge. Ms Goldsmith runs a private practice through which she helps provide assessments on children for many parents as private clients. She has spent over a decade honing her practice and improving the private assessments she offers, in both child and adult pathology for autism diagnosis.
Initial Concepts of Autism
The concept of autism traces its roots back to the early 20th century when German psychiatrist Eugen Bleuler first coined the term back in 1911. Initially, autism was used to describe a symptom observed in the most severe cases of schizophrenia. Bleuler believed that individuals with autism exhibited a form of thinking characterized by infantile desires to evade unsatisfactory realities and instead engage in fantasies and hallucinations.
Throughout the 1920s and up until the 1950s, psychologists, psychoanalysts, and psychiatrists in Britain employed the term autism in line with Bleuler’s definition. However, in the 1960s, British child psychologists embarked on a paradigm shift, challenging the assumptions about infantile desires which Bleuler put forth. As a result, autism underwent a complete reformulation, emerging as a descriptive category aligned with the requirements of this new model of child development.
Paradigm shifts in understanding autism in the mid-20th century
It was Leo Kanner’s groundbreaking work in the early 1940s (based on the time then of what expert evidence was available) that shed further light on autism. Kanner described a specific pattern of “abnormal behaviour”, and although Kanner did not provide an estimate of the prevalence of this condition, he believed it to be rare.
Over two decades later, Victor Lotter conducted an epidemiological study focusing on children displaying the behaviour pattern identified by Kanner. The study, conducted in the county of Middlesex, revealed an overall prevalence rate of 4.5 per 10,000 children.
In 1944, Hans Asperger, whose history has recently sparked debate, published a study in Vienna describing children who exhibited similarities to Kanner’s syndrome (classic autistic disorder) but demonstrated average or superior language abilities, including grammar.
The relationship between Asperger and Kanner syndromes remains a subject of ongoing discussion. Still, it is indisputable that both conditions share the common traits of impaired social interaction and communication alongside a narrow and repetitive pattern of activities.
Since Asperger’s and Kanner’s initial observations, research and clinical applications have significantly contributed to our understanding of autism.
Diagnoses of autism have become more common, indicating progress in identifying individuals on the autism spectrum. The Office of National Statistics (ONS) conducted a survey to learn more about children and young people’s mental health in Great Britain. This survey revealed a prevalence rate of 0.9% for autism, equating to 90 in 10,000 individuals. However, the survey did not distinguish between autism, Asperger syndrome, or other profiles within the autism spectrum.
However, despite these advancements, there is still much work to be done in creating a world that accommodates and supports autistic individuals effectively via cutting edge psychometric training.
Modern autism assessments and practices in Ireland
Initially, Caroline Goldsmith notes that autism assessments required those being tested fit into relatively narrow criteria. However, as knowledge of this developmental disorder has increased, most professionals now understand that autism exists on a spectrum.
Unfortunately, modern autism assessments and practices have faced significant challenges in Ireland, particularly concerning data collection methods and service planning. Currently, Ms Goldsmith states there is a lack of comprehensive epidemiological data on the prevalence of Autism Spectrum Disorder (ASD) across Ireland, making it difficult to accurately assess the issue’s scope. Furthermore, the absence of a specific register detailing the number of individuals accessing or needing ASD services in education further hampers effective service delivery.
While precise and up-to-date prevalence data is unavailable, some estimates can be derived from census data. The 2006 Census and the subsequent National Disability Survey (NDS) highlighted that approximately 22% of respondents reported difficulties with intellect and learning. Within this group, 5% attributed their challenges to an Autistic Spectrum Disorder.
Notably, 38% of the individuals were aged 0-17 years, suggesting a prevalence of ASD in this cohort of around 1.1%. While ascertainment weaknesses exist, this estimate aligned with the figure of 1/100 (0.9%) by the Centre for Disease Control in the US, though this figure is now estimated at 1 in 36 children (2.78%).
In addition to the complexities surrounding prevalence data, criticisms have been directed at the Autism Diagnostic Interview-Revised (ADI-R) as an assessment tool via applied positive psychology. Consulting psychologist Caroline Goldsmith, based in Ireland, acknowledges concerns regarding the ADI-R.
Ms Goldsmith and many other experts argue that the ADI-R is an expensive and time consuming instrument which fails to identify a significant proportion of cases of autism, thus failing vulnerable families. It is subject to personal error and could even be used by unqualified psychologists, which is becoming an increasing worry with openly fake qualifications being seen online. If misdiagnosed, a child with autism may be prevented from receiving the support they require, even if the adults in their life have noted behaviour that correlates to the autistic spectrum.
The limitations of this tool have led to a substantial debate within the field, highlighting the need for more accurate and efficient measures (assessment protocols) to diagnose autism in Ireland and avoid issues of misdiagnosis and personal error. One size does not fit all and the work up for the assessment of a verbal child is vastly different to that of a non-verbal child, yet no differentiation is made within the public process. We must provide clinical educational assessment and autism intervention to those children who need it otherwise we completely let down their educational prospects.
Among those critics are even the tools authors; Catherine Lord and Michael Rutter who state the ADIR to be an overly long instrument, yet they have not proposed a better alternative as yet. Only a proportion of items actually feature in the scoring of the final determination, while some critics state only seven of the 93 items in the ADIR are relevant to the final diagnosis.
In addition to the difficulties surrounding data collection, some old-fashioned practitioners fail to take this into account and do not provide a correct diagnosis if the child they are working with does not meet the narrow concept of autism they hold.
Overall, addressing the challenges of data collection, prevalence estimation, and the effectiveness of assessment tools like the ADI-R is crucial for improving autism assessments and practices in Ireland. By obtaining reliable data and adopting more accurate and efficient diagnostic methods, professionals like Ms Goldsmith can contribute to the desired enhancements of service planning and delivering appropriate support to individuals on the autism spectrum across the country.
The importance of autism assessments and services
Caroline Goldsmith, as a clinical psychology expert, knows that early intervention and diagnosis are critical. A correct and ideally early diagnosis of autism allows children to access appropriate support and services with timely manner intervention. These can help those with autism cope and flourish where they may have previously struggled, by not missing vital windows of intervention opportunity.
While growing awareness of ASD (autism spectrum disorders) has been a positive thing, Ms Goldsmith states we are now facing a new issue. Wait lists and waiting times for assessments and support are consistently increasing, making things even more challenging for a significant proportion of children with autism and their families.
The growing concern surrounding increasing waitlists and waiting times for assessments and support has presented a significant struggle in Ireland. As an Irish-based consulting clinical psychologist, Caroline Goldsmith emphasizes the urgent need for changes within the public system to ensure that children and families have timely access to the necessary assessments and ongoing support they require.
Awareness and understanding of autism is still a relatively recent phenomenon. Part of the reason we have seen a spike in the number of autism diagnoses in the last few years is that today, more people are becoming aware and are, therefore, able to seek the help and support they need.
Efforts should be made to streamline the assessment process, reduce waiting times, and allocate sufficient resources to meet the fast-growing demand for autism services. By addressing these issues, we can strive to create a system that effectively supports and empowers individuals on the autism spectrum, fostering their well-being and success.
While Autism experts like Caroline Goldsmith are doing their best, through private assessments and practices (private psychologists), to ensure children and families in Ireland have access to the assessments and ongoing support they need, greater changes are needed within the public health service system.
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