Is Autism Diagnosis Meaningless?

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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.”

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.”

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

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.

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

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.”

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.

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.”

I'm autistic with no speech delay and an IQ of 137. I've met autistic people who were nonverbal and had IQ scores in the 20s.

In several cases, they showed very similar sensory processing, thought patterns, and general inclinations as me, just turned up to 11 with no ability to mask.

It really is one spectrum.

I'm autistic with no speech delay and an IQ of 137. I've met autistic people who were nonverbal and had IQ scores in the 20s.

In several cases, they showed very similar sensory processing, thought patterns, and general inclinations as me, just turned up to 11 with no ability to mask.

It really is one spectrum.

It really is one spectrum.

Most likely autism is simply a symptom of multiple causes funneled down into a limited number of presentations.

There’s lots of reasons why someone can’t walk or see for example.