Professor Uta Frith of University College London recently spoke out about autism spectrum disorder (ASD) diagnosis, saying urgent changes are needed in how the condition is diagnosed as it “has been stretched to breaking point and has outgrown its purpose”.
The comments were made after a study was published in the Journal of Child Psychology and Psychiatry looking at time trends in autism diagnosis in the UK over 20 years. The study revealed that cases of autism diagnosis have risen by 787%.
Speaking as Emeritus Professor of Cognitive Development, at UCL Institute of Cognitive Neuroscience, Professor Frith commented: “This is an important study documenting the explosive jump in diagnoses of autism over the last two decades. If the purpose [of autism diagnosis] is to predict what an individual’s needs are, this is no longer possible.”
“Researchers need to think hard about how to disentangle the underlying conditions in individuals now all labelled autistic,” she continued. “Without such an effort, research into the causes of autism will become meaningless.”
Intrigued by the findings and the comments made by Professor Frith, Autism Parenting Magazine (APM) invited other autism experts to weigh in on the findings. Below, you can read what they shared exclusively with APM.
Autism diagnosis views from experts
Dr. Erica Skepnek, PsyD, a Licensed Clinical Psychologist working with Arizona Autism United (AZA United) believes autism diagnosis offers limited information: “Autism has a very heterogeneous presentation, so learning that someone has autism certainly does not tell us as much about them and their needs as it has in the past.”
Dr. Skepnek added greater awareness and understanding of the heterogeneity of autism, as well as increased screening for developmental delays, revisions in diagnostic criteria, and increasing access to clinicians qualified to evaluate and diagnose ASD, have all contributed to the increased incidence. She explained: “The high rate of requests for evaluations among adolescents and adults suggests that these individuals were always there, their symptoms of autism were just not recognized as such.”
Kjirsten Broughton, MS, CCC-SLP, a Speech Pathologist also believes increased autism awareness is contributing to the rise in diagnosis. She said: “Many autistic individuals who were diagnosed as adults wish they had been aware of their autism as a child. Diagnosis can help lead to treatment of often coexisting conditions including sensory processing issues, gastrointestinal issues, sleeping difficulties, and anxiety.”
A gross generalization for a spectrum of abilities
Brianna Leonhard, BCBA, a Board Certified Behavior Analyst and educator, passionately added: “Any statement claiming a diagnosis is meaningless is a gross generalization, regardless of which diagnosis is being discussed. For autism specifically, the article points to the fact that awareness has increased dramatically in the last two decades and could be a leading cause in the rise of diagnoses. I would agree with that statement.”
Brianna is keen to remind people that autism is a spectrum, and says it is just recently that people are beginning to see the true range of that spectrum.
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“There are many people with autism diagnoses that function independently in the ‘real world’,” she continued. “There is also a population of individuals with an autism diagnosis that will need care for the rest of their lives. An autism diagnosis highlights areas of weakness that are specific which gives practitioners, teachers, and caregivers a path to start on when addressing those weaknesses.”
Amy Launder, MS, an Intersubjective Psychotherapist at The Awareness Centre, reasserted that an autism diagnosis is vital for accessing therapies and support. “It also can help to explain to the individual why they think the way that they think, why they might feel different from other people in various ways, and can also help to explain these things to others around them,” she added.
Broadening of autism diagnosis criteria
Brian Steinberg, an ABA therapy provider, is a firm believer that the increase in diagnoses is due to an increase in the awareness of autism, along with a broadening of diagnostic criteria.
“Prior to 20 years ago, only children with gross social deficits were identified as ‘autistic’. What has changed is a broadening of the diagnostic criteria, along with better access to diagnostic testing and professionals knowledgeable about the disorder,” he explained.
“The diagnosis of autism used to require ‘gross deficits in language development’ and ‘a pervasive lack of responsiveness to other people’. This is no longer the case. The diagnostic criteria now requires ‘persistent deficits’ (as opposed to gross deficits) in social communication and social interaction. Some years ago a person with an autism diagnosis today might have received a ‘language disorder’ or ‘intellectual disability’ diagnosis due to not meeting the ‘gross deficit’ criteria.”
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Autism diagnosis views from people on the spectrum
Sharon O’Connor, LCSW, who is diagnosed autistic and is a licensed psychotherapist, said: “There has been an increase in autism diagnosis because our concept and understanding of what autism actually is has expanded to better reflect the nuances of how autistic people can present.”
According to Sharon, our growing understanding of autism has been greatly informed by the increasing number of autistic people advocating and sharing about their experiences.
“As understanding of autism grows and expands, the rate of diagnosis will naturally increase along with it. Autism has long been underdiagnosed. The field is now catching up due to an increasingly better understanding of the diversity of presentation within the autistic community, and that is a wonderful thing,” she explained. “With more diagnoses happening, we now have more autistic people who better understand their lives, challenges and traits. Diagnosis has no doubt been life-changing, and probably even lifesaving for a lot of autistic people, who might have otherwise found themselves struggling or feeling different, but not knowing why.”
Autisitic girls and women are underdiagnosed
Danielle Sullivan, MA, an autistic woman and neurodiversity life coach, continued: “As one of the many, many adult women who was not identified as autistic until later in life, it’s not surprising to me that autism rates are up. Diagnosis rates of girls, women, and people of color are lower than they should be considering that we know that autism is roughly equally common regardless of sex or race, which implies that girls and people of color are still being underdiganosed compared to white men.”
Diagnosis is vital for support entitlement
Danelle adds that, for practical purposes, diagnosis is very important as it’s often the only way to access services like therapy and life support through medical insurance, at least in the United States. The diagnosis is also necessary to receive disability accommodations in higher education and at work, and to qualify for disability benefits for those of us who are unable to work.
“So in a purely practical way, yes, we absolutely need the autism diagnosis. However, what I believe Professor Frith is getting at in her comment is that the autism diagnosis currently covers a huge variety of people: people with lower or higher support needs, people of varying intelligence, speaking and non-speaking, etc. The range of individuals who fall under the autism diagnosis is so broad as to be nearly useless for researchers attempting to determine how autism occurs and how to support autistic people, because each individual autistic is so unique,” she added.
“As we gain more knowledge around autism, it’s likely that we’ll be able to create more specific categories within the autism spectrum, similar to the way we have for ADHD, to enable researchers to develop more specific treatments and supports for autistics with different needs.”
The steep rise in autism diagnoses over recent years is undeniable and could be due to a combination of factors, including increasing awareness of neurodiversity as well as a broadened diagnostic criteria.
It’s vital to note that diagnosis is critical for children to access early intervention services, to grow up understanding their differences, and to receive appropriate education. It is hard to disagree that autistic children who receive support at key developmental stages have greater outcomes than children with ASD who slip through the diagnosis net.
Russell Ginny et al, Time trends in autism diagnosis over 20 years: a UK population-based cohort study: https://acamh.onlinelibrary.wiley.com/doi/10.1111/jcpp.13505
Expert reaction to study on trends in autism diagnosis over the last 20 years: https://www.sciencemediacentre.org/expert-reaction-to-study-on-trends-in-autism-diagnosis-over-the-last-20-years/