Are there more autistic people now?

Are there more autistic people now? This question has been gaining attention lately. You may have come across social media videos discussing the signs of autism or heard about the long waiting times for autism diagnoses. It seems that the number of individuals diagnosed with autism is increasing rapidly. This situation carries significant implications, as it can mean different things to various people. For some, autism is a source of concern, particularly regarding their children. For others, it represents an integral part of their identity, perhaps even a unique strength. So, what is the reality behind the rising numbers of autistic individuals, and what does it signify? To accurately count the number of autistic individuals, we must first clarify what we are measuring. According to Ginny Russell, an associate professor of psychiatry at University College London, a diagnosis of autism requires individuals to exhibit persistent difficulties in social interactions and communication. This definition is based on criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM. Examples of these difficulties can range from challenges in taking turns during conversations to being completely non-verbal. Additionally, there are specific traits, such as restricted interests and repetitive behaviors, that must also be present for a diagnosis. These behaviors can include actions like hand flapping, rocking, or skin picking, as well as adhering to strict routines, such as eating the same food every day. But what evidence exists to support the claim that the number of individuals meeting these criteria has increased? Ms. Russell led a comprehensive study examining changes in autism diagnosis rates in the UK over a span of 20 years. The study analyzed data from approximately nine million patients registered with general practitioners. The findings revealed a staggering eightfold increase in new autism diagnoses from 1998 to 2018. Ms. Russell described this surge as 'enormous' and best characterized as exponential. This trend is not limited to the UK; although data is scarce in many parts of the world, Ms. Russell noted that countries in the Anglophone and European regions with available data show compelling evidence of a similar rise in diagnoses. However, it is crucial to understand that an increase in autism diagnoses does not necessarily equate to a rise in the actual number of autistic individuals. While studies like Ms. Russell's indicate a significant increase in diagnoses, it raises the question of whether this surge is due to changes in the criteria for autism rather than an actual increase in the autistic population. The definition of autism has evolved over time. The earliest studies describing autism emerged in the 1930s and 1940s, focusing primarily on children with high support needs who were often late to speak or did not speak at all. Francesca Happé, a professor of cognitive neuroscience at King's College London, has been researching autism since 1988. She explains that the definition broadened in the 1990s when Asperger's syndrome was included in diagnostic manuals. Individuals with Asperger's were recognized as being on the autism spectrum due to their social difficulties and repetitive behaviors, but they typically had fluent language skills and above-average intelligence. The eightfold increase in new diagnoses identified by Ginny Russell includes cases of Asperger's syndrome, which is now considered a specific type of autism. Additionally, a category known as 'pervasive developmental disorder not otherwise specified' (PDD-NOS) was added to diagnostic manuals, further contributing to the rising numbers. Today, diagnostic manuals refer to autism spectrum disorder (ASD), encompassing individuals previously diagnosed with Asperger's or PDD-NOS. This broader definition has expanded the criteria for autism. One notable change is the increasing recognition of autism in women and girls. Sarah Hendrickx, an autistic individual herself, has been diagnosing autism for over 15 years. She has observed that the rise in diagnoses has been significantly more pronounced among females than males. In her early years of practice, most of her patients were boys, but now she sees a nearly equal number of girls seeking diagnosis. Hendrickx, who was diagnosed with autism as an adult, believes that the surge in diagnoses reflects a long-overdue acknowledgment of individuals who have been overlooked for decades. Historically, autism was primarily associated with boys, leading to many autistic girls being misdiagnosed with mental health conditions such as social anxiety, obsessive-compulsive disorder (OCD), or borderline personality disorder (BPD). As research has advanced, our understanding of how autism manifests in girls and women has improved, thanks in part to publications like Hendrickx's book, 'Women and Girls on the Autism Spectrum. ' One significant difference is that girls may be more adept at masking their autistic traits, which allows them to blend in socially by mimicking the behavior of others. The increase in diagnoses has also been notably higher among adults compared to children. Hendrickx points out that this shift indicates a broader understanding of autism, now encompassing individuals with lower support needs. Many adults without intellectual disabilities are now being diagnosed, whereas those with developmental delays in speech were often diagnosed at a much younger age due to clearer signs. Data supports this trend, showing that between 2000 and 2018, new autism diagnoses among individuals with intellectual disabilities rose by about 20%, while diagnoses among those without intellectual disabilities surged by 700%. This shift in the demographic of diagnosed individuals is seen as a positive development by many, including Ellie Middleton, an autistic content creator and author. Middleton emphasizes that skeptics questioning the increase in diagnoses should instead consider how many individuals have spent their lives undiagnosed and unsupported. She shares her own experience of struggling with mental health issues before receiving her autism diagnosis, which allowed her to make significant changes in her life. However, some individuals express concern that the portrayal of autism in the media may not accurately reflect the diverse experiences of autistic individuals. Venessa Swaby, who runs support groups for autistic children, argues that the focus on celebrities with autism can create a glamorized image of the condition, leaving families with non-speaking autistic children feeling marginalized. As the number of autism diagnoses continues to rise, the diversity of autistic individuals is also increasing, leading to discussions about the meaning of autism and who has the right to define it. There are various theories regarding the reasons behind the increase in diagnoses. Some speculate that it may be linked to vaccines or environmental factors. However, research indicates that the rise in diagnoses is primarily due to changes in the definition of autism rather than an actual increase in the number of autistic individuals. Ginny Russell examined potential environmental factors and found only a few plausible explanations for the rise. She noted a well-established link between parental age and the likelihood of having an autistic child, as well as some evidence related to preterm birth and complications during pregnancy. However, she emphasized that these factors should be viewed in context, stating, 'I honestly believe that the vast majority of the increase is due to what I would call a diagnostic culture. ' Our understanding of autism has evolved, leading to an increase in diagnoses. In conclusion, while the number of individuals diagnosed with autism is on the rise, it is essential to recognize that this does not necessarily mean there are more autistic individuals. Understanding how our definitions and perceptions of autism have changed over time is crucial in addressing the needs of those on the spectrum.