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A New Study in the UK Confirms Autism Diagnoses Has Increased by 787 percent

The significant increase between 1998 and 2018 was higher for females of those assigned female at birth than males or those assigned male at birth, with more rises among adults being diagnosed

The amount of autism diagnoses has increased by 787 percent in the past twenty years, according to a new study published in the Journal of Child Psychology and Psychiatry They have provided reports about these statistics, concluding that it is likely due to increasing recognition.

The significant increase between 1998 and 2018 was higher for females of those assigned female at birth than males or those assigned male at birth, with more rises among adults being diagnosed.

Researchers discovered these numbers as they compared the rates of autism in GP records in the UK, analyzing over 9 million patients from GP practices.

In addition, the study suggests the previous diagnosis of Asperger’s disorder (which no longer exists and is now under the autism spectrum umbrella) had increasingly applied until the diagnosis was abandoned in 2013.

The research also suggests that there could be more increases due to more reporting and application of diagnosis. This study is the first of its kind to study the time trend of autism diagnoses. It analyzed population-based UK clinical cohort in the developmental stage, level of severity and by gender, and a time frame of over two decades.

The increasing rate of diagnoses could also be due to increased recognition; however, an increase in actual autism incidence must be considered. 

According to lead author Ginny Russell, from the University of Exter:

“As there is not really a plausible reason why autism should increase more in adults and females our study suggests the change is probably due to increased identification, and not more people with neurodevelopmental disorders per se.

However, autism is not like a continent awaiting discovery. The definition of what constitutes autism has changed over time, and females and adults were not often thought of as having autism 20 years ago. The vocal work of charities and media coverage, combined with changes in policy has led to more assessment centres for adults, and an autism narrative that many women and girls identify with. Consequently demand for diagnosis has never been higher.”

Data from the Clinical Practice Research Datalink (CPRD) primary care database, which has patients registered with practices providing data to the CPRD between 1998 and 2018, reported a total of 65,665 patients that had an autism diagnosis recorded in 2018.

In addition, the findings determined that there is an increased age of diagnosis over time for each developmental stage. In preschools, this may happen because a diagnosis of autism in younger children is a complex process and may need to align with a family’s pace. De-stigmatization of this label because of advocacy work implemented by the neurodiversity movement and parent-led lobby groups may have also contributed to demands for more diagnosis to access proper support. 

Finally, autism has always been conceptualized as a “male” disorder. Since this has always been the case, there has been more demand for referring more female or AFAB patients. The Journal of Child Psychology and Psychiatry study has also shown remarkable growth in female/AFAB diagnoses compared to their male/AMAB counterparts. In essence, these initiatives clearly seem to be having an effect.

Related: Why Does Autism Get Diagnosed Less in Women and Femmes?

What is Autism Spectrum Disorder (ASD)?

Autism spectrum disorder (ASD) is a developmental disability that features social, communication, and behavioral struggles. There is nothing about how a person with ASD looks that distinguishes them from neurotypical people. Still, a person with ASD may communicate, interact, behave, and learn differently than neurotypical people. In addition, some people with ASD need more support in their daily lives, whereas neurotypical people may not require the same requirements for help. 

A diagnosis of ASD can include various conditions that used to have a separate diagnosis:

  • Autistic disorder.
  • Pervasive developmental disorder not otherwise specified (PDD-NOS).
  • Asperger syndrome (which, as previously mentioned, no longer exists, and many autistic people do not like being associated with this name as Hans Asperger, who the syndrome was named after, participated in the Nazi eugenics program).  

These conditions are now all within the autism spectrum disorder.

Signs and Symptoms

People with ASD generally have problems with social, emotional, and communication skills. They may repeat some behaviors that they do not want to change their daily activities. In addition, many people with ASD have specific ways of learning, reacting, or paying attention to things. Signs of ASD begin in early childhood and will likely last throughout a person’s lifetime.

Every child or adult with autism experiences unique symptoms, and ASD does not look the same for everyone. However, there are some signs and symptoms that may point to ASD. These include:

  • not pointing at objects to show interest
  • not looking at objects when someone points to them
  • struggling to relate to others or not being interested in other people (more common in AMAB people with autism than AFAB) 
  • avoiding eye contact or forcing themselves to make eye contact even when uncomfortable (part of a process called “masking”)
  • wanting to be alone
  • having issues understanding other people’s emotions or how to talk about their own feelings
  • preferring not to be touched, or will only cuddle or touch people that they are incredibly comfortable with
  • appearing to be unaware when people talk to them directly but can respond easier to other sounds
  • being interested in people but not knowing how to relate to them
  • repeating or echoing words or phrases said to them
  • having trouble displaying their needs with typical words or motions
  • repeating actions over and over
  • having challenges when adapting to a routine change
  • having unusual reactions to how certain things smell, taste, look, feel, or sound
  • losing skills that they used to have

How Does Autism Get Diagnosed?

Diagnosing ASD can be challenging since there is no specific medical test, like a blood test, to diagnose autism. Instead, physicians will analyze the child’s behavior and their development to make a diagnosis.

Sometimes, ASD can be detected at an early stage, like 18 months or younger. By age 2, a diagnosis by an expert can be very reliable and accurate. However, there are still many children who do not receive a final diagnosis until they get older. For some, they won’t even get diagnosed until adulthood. This delay in diagnosis means that children or adults with ASD might not get the early support and help they require. 

However, this recent study conducted in the Journal of Child Psychology and Psychiatry provides hope that there will be more early diagnosis and diagnosis in general, to come. 

Reference: 

Russell G, Stapley S, Newlove-Delgado T, et al. Time trends in autism diagnosis over 20 years: a UK population-based cohort study. Journal of Child Psychology and Psychiatry. doi:10.1111/jcpp.13505

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Billie Olsen

AUTHOR: Billie Olsen

Billie Olsen (she/they) is a lifestyle writer, disability justice advocate, and cozy femme located in Kelowna, BC, Canada. Their works have appeared in Metro News, Discorder, Sophomore Magazine, the Post-Feminist Post, DINE Magazine, and NerdReader.

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