In the realm of medicine, the principle of early diagnosis is widely accepted. Identifying a condition early allows for timely intervention, potentially leading to improved outcomes. Significant efforts have been dedicated to enhancing early diagnosis for various conditions, including autism spectrum conditions (ASC). For instance, the Autism Research Centre (ARC) at Cambridge University has been at the forefront of this endeavor, developing screening tools like the Checklist for Autism in Toddlers (CHAT) and its revised version, Q-CHAT, to detect ASC in toddlers as young as 18 months. Similarly, the Childhood Asperger Screening Test (CAST) aids in identifying Asperger Syndrome (AS) in primary school-aged children.
However, while early diagnosis remains crucial, it’s equally important to address the issue of Late Diagnosis, particularly for conditions like Asperger Syndrome. This article delves into the significance of recognizing and understanding late diagnosis of AS, especially for a generation who grew up before widespread awareness of this condition.
The “Lost Generation” and the Delayed Recognition of Asperger Syndrome
If early diagnosis is so vital, why focus on late diagnosis? The answer lies in the historical context of Asperger Syndrome. Despite being a significant subgroup within the autism spectrum, AS remained largely unrecognized by the English-speaking medical community until relatively recently. While Dr. Hans Asperger, an Austrian pediatrician, documented the condition in 1944, his work, published in German, went largely unnoticed for nearly four decades. It wasn’t until Dr. Lorna Wing’s pivotal 1981 paper in Psychological Medicine that AS began to gain traction in the English-speaking world. Even then, the first English book on Asperger Syndrome only emerged in 1991, a mere 15 years prior to the original article’s writing. Formal recognition in international classification systems for diagnosis followed in 1994.
The subsequent years witnessed an explosion of publications on AS, largely thanks to specialized publishers like Jessica Kingsley Ltd. This surge in literature contributed significantly to raising awareness among educators, clinicians, social workers, and parents. Consequently, many children with AS are now being identified and diagnosed during their middle childhood years.
However, this progress leaves behind a “lost generation” – individuals born before the 1980s. These individuals, who may have Asperger Syndrome, grew up in a time when the condition was not recognized, diagnosed, or understood. They lacked access to specialist clinical teams and even the basic concept of AS. To address the needs of this overlooked population, clinics specializing in the late diagnosis of AS have emerged, recognizing that for many, understanding their condition in adulthood is profoundly impactful.
The Struggles of Undiagnosed Asperger Syndrome
Individuals from this “lost generation” often present at late diagnosis clinics in young adulthood or middle age, sharing remarkably similar life stories. Their narratives are marked by consistent challenges throughout their formative years.
School was frequently a difficult experience. Many struggled to form friendships and fit in socially, often experiencing bullying, both physical and verbal. As Claire Sainsbury poignantly described in her book title, they felt like “an alien in the playground.” While some persevered and achieved academic success, navigating their teenage years was invariably an uphill battle. By young adulthood, many had experienced clinical depression and even suicidal thoughts, stemming from the unrecognized and unsupported nature of their Asperger Syndrome. Relationship difficulties and workplace challenges were also common, arising from misunderstandings in social expectations, interpersonal conflicts, and being overlooked for career advancement due to perceived lack of “team skills.”
For others, the lack of understanding and support led to more severe consequences. The constant experience of being excluded, bullied, and feeling different eroded their self-esteem, leading some to drop out of school. In some cases, schools, ill-equipped to handle their “odd” or “disruptive” behaviors, requested their departure. Others disengaged from education as the curriculum seemed irrelevant to their intense, focused interests, often in niche subjects like military history, molecular biology, or specific areas of mathematics, pursued to the exclusion of broader subjects deemed essential in mainstream education. Tragically, many left school at a young age without qualifications and faced long-term unemployment.
The Cambridge Lifespan Asperger Syndrome Service (CLASS) and Adult Diagnosis
For many from this “lost generation,” the realization that Asperger Syndrome exists comes as a revelation, often triggered by an article, website, or poster. The moment of self-recognition – “This is me” – is frequently a turning point. The Cambridge Lifespan Asperger Syndrome Service (CLASS) clinic specifically addresses the needs of these individuals seeking late diagnosis.
The diagnostic process at CLASS involves a comprehensive assessment, requiring the individual to be accompanied by a parent or someone who knew them well during childhood. This ensures a holistic understanding of their developmental history, as Asperger Syndrome is characterized by early childhood social difficulties and focused interests. The diagnostic interview, typically lasting around three hours, aims to identify the consistent “red thread” of AS traits throughout the person’s life.
Recognizing the lack of suitable diagnostic tools for adults, CLASS has pioneered new methods for late diagnosis, including screening instruments like the Autism Spectrum Quotient (AQ) and the Empathy Quotient (EQ), and the Adult Asperger Assessment (AAA), a semi-structured interview schedule. These resources are publicly available on the Autism Research Centre website, promoting wider access to diagnostic tools.
CLASS operates as a diagnostic clinic, receiving referrals from across the UK. Their primary role is to confirm or rule out an AS diagnosis. Following assessment, they provide a detailed report to the individual’s General Practitioner (GP) with recommendations for local support services. These recommendations often include connecting individuals with the National Autistic Society (NAS) and other relevant organizations for support groups, employment assistance, befriending services, and supported living options.
The Impact of a Late Diagnosis: Relief and Ongoing Needs
For many adults receiving a late diagnosis of Asperger Syndrome, the diagnosis itself is profoundly impactful, bringing immense relief and a framework for understanding their life experiences. It provides a sense of validation and helps them make sense of a lifetime of feeling “different.”
Post-diagnosis, many individuals connect with online AS communities, finding peer support and shared understanding. Some embrace their AS identity, recognizing the unique strengths associated with the condition, such as exceptional attention to detail, deep focus on specialized interests, and remarkable skills in systematic thinking, often leading to talents in artistic, scientific, or technical fields.
However, challenges persist even after late diagnosis. GPs may not always fully implement the recommendations from specialist clinics like CLASS, leaving individuals with limited or inadequate support. Navigating local services can be complex, with unclear lines of responsibility across social services, education, health, mental health, and learning disability services. This inter-agency fragmentation can leave individuals struggling to access the necessary support, mirroring the unmet needs they experienced throughout their lives.
The issue of funding also plays a significant role. Clinics like CLASS often rely on charitable funding to operate, highlighting the gap in public health provision for adult autism services. While charitable support has been crucial in providing diagnostic services, sustained and comprehensive support requires systemic changes within national healthcare systems to ensure that individuals diagnosed with AS, regardless of age, receive appropriate and timely support.
In conclusion, while early diagnosis remains a vital goal, recognizing and addressing the needs of individuals who receive a late diagnosis of Asperger Syndrome is equally critical. The “lost generation” of undiagnosed adults highlights the historical gap in awareness and services. Clinics like CLASS play a crucial role in providing diagnostic clarity, but broader systemic changes are needed to ensure that a diagnosis of AS, at any age, translates into meaningful and accessible support, enabling individuals to thrive and contribute fully to society.
Additional Resources:
- IAN Community: Adults with Autism
