How Is An ASD Diagnosis Made?
Autism spectrum disorder (ASD) is a diagnostic label for a neurodevelopmental condition and form of neurodivergence impacting millions of individuals worldwide. Autism occurs from birth and continues throughout life. Understanding the different ways ASD is classified, as well as the neurodiversity movements in the present day, can be a way to reduce stigma, increase access to resources for Autistic individuals, and learn more about the complexities of this label.
What is autism spectrum disorder?
Autism spectrum disorder is categorized as a neurodevelopmental disorder in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V), the reference book clinicians use to assess the presence of mental health conditions. Neurodevelopmental disorders are defined as those that begin in the “developmental period,” an umbrella term used to describe a child’s development between the ages of zero and six years old or before a child enters grade school.
Autism spectrum disorder is a newly revised term for several earlier disorders listed in prior editions of the DSM, including pervasive developmental disorder and Asperger’s syndrome. The term “Asperger’s” is no longer used clinically and has harmful associations. However, some Autistic people may choose to use this term to describe themselves.
The DSM-V lists five distinct areas of ASD symptoms a person must demonstrate to be diagnosed with autism in a formal evaluation, including the following:
They need to demonstrate both:
“Persistent deficits in social communication and social interaction” and
“Restricted, repetitive behaviors, interests, or activities.”
The symptoms from both above categories need to:
Be present in early childhood (or, if not diagnosing children, healthcare providers can confirm the presence of symptoms in early childhood by consulting with a person’s former caregivers, teachers, or developmental pediatricians) and
Cause functional impairment.
Another intellectual disability or developmental disability must not better explain the symptoms.
When diagnosing children with autism, a child’s healthcare provider may review relevant risk factors, observe the child’s behavior, and consult with caregivers and other healthcare providers to learn more about the child’s developmental history. Formal adult diagnosis of autism often occurs in different settings, such as through conversations with a mental health counselor or an occupational therapist.
What is neurodiversity?
Some Autistic people identify as “neurodivergent.” This term encompasses a broad range of developmental differences, often including people with attention-deficit hyperactivity disorder (ADHD), dyslexia, and other conditions. It refers to being born with cognitive and sensory differences from other individuals, who might be referred to as “neurotypical.” Neurodivergence and the neurodivergent movement posit that autism is not a curable condition but a difference in the brain.
Neurodiversity expresses the positive traits that Autistic people may excel in. For example, studies show that Autistic adults excel at a higher level than neurotypical individuals in detail orientation, sensory and visual-spatial abilities, synaptic functions, attention focus, and decision-making. In addition, researchers have found that Autistic individuals communicate as effectively with other Autistic individuals as neurotypical people communicate with each other, showing that social “deficits” may only be present for some people with ASD or in certain situations.
Avoiding the term “diagnosis”
Some people with ASD prefer not to use the word “diagnosis” when referencing their Autistic identity. Historically, Autistic people have had difficulties with securing the right to self-determination, with non-Autistic people dictating what it meant to be autistic. A diagnosis, by nature, involves someone else labeling your personal experience, so some Autistic people are uncomfortable with the concept of diagnosis.
A diagnosis is a direct application of broad generalizations about a condition. Because the experience of autism can be so varied, some people with ASD may believe a diagnosis is reductive. There could be several additional reasons for this preference, as detailed below.
Negative connotations
Some people may associate the word “diagnosis” with disease, which is often considered pathological and undesirable. Receiving a diagnosis can also imply that there is an aspect of a person that is different from what is regarded as the norm or that a person has a problem that needs fixing. Some people with autism do not view their condition as a disease and would not accept a “cure” for ASD even if there was one available. For this reason, they may avoid language that could cast their experience as inherently negative.
Pride in autistic identity
Some people with ASD see their autism as a fundamental part of who they are. They may see the word “diagnosis” as communicating that ASD should be worked around rather than an integral component of a person’s sense of self.
People who believe their autism makes them who they are may also prefer to use “identity-first language” to describe their condition, i.e., “Autistic person” as opposed to “person with autism.” Note that others may prefer person-first language, and both preferences are valid. Respect each person’s preferences when referring to them.
Stigma and misunderstanding
Autism and Autistic experiences are not widely understood by society, so some people with ASD may be concerned that the use of the word “diagnosis” could make people who are uninformed about the condition think of it as an illness or a contagious disease. Removing “diagnosis” from the discourse could be part of a broader movement toward affirming neurodiversity and framing autism more positively and inclusively.
Medicalization of ASD
There are various lenses through which one can view autism and disability. Some people with autism advocate for a social model of autism, which argues that it is not experiences with autism symptoms themselves that make functioning more difficult for Autistic people, but rather the fact that society is set up in ways that privilege neurotypical people and don’t make room for people who may navigate the world differently.
Some Autistic people may argue that the word “diagnosis” is associated with the medical model of autism, which considers the condition a “disease” that “should be mitigated, treated, and potentially cured.” Autistic people often reject the notion that they need to be cured and may want to celebrate the more positive aspects of having ASD.
Note that some people with autism may view autism as a disability and may not identify with the neurodiversity model. This way of viewing one’s own disability can also be valid, and each Autistic individual has a right to the way they view their experiences. It can also be beneficial to note that non-verbal or partially-verbal people with ASD may not be able to share their opinions about this topic in the same way as Autistic people with complex verbal and cognitive capabilities.
Benefits of a formal autism diagnosis
There are situations where being diagnosed with autism can be beneficial, even if one rejects the “diagnosis” label. Diagnoses may help individuals secure necessary accommodations and access support systems. For example, parents of Autistic children may be asked to provide proof of their child’s official diagnosis to develop an individualized education plan with their child’s teachers to ensure their child’s specific educational needs are being met.
Diagnoses may also be validating for a person who has always felt they were “different.” This situation can be more common for people with autism who did not receive a diagnosis in childhood. They may have experienced negative feedback about some of their qualities, which could have adversely impacted their self-esteem. Understanding that they are neurodivergent through a formal autism diagnosis could be an affirming experience.
Self-diagnosis options
Receiving a formal autism diagnosis may not be possible in every case. Barriers to diagnosis could include the following:
- Bias: Medical professionals often misdiagnose or underdiagnose autism in people of color, LGBTQ people, and women and girls because of biases about how autistic symptoms “should” present. These biases were formed because of early studies on the condition that almost exclusively focused on assessing autism in cisgender, straight, and white men and boys.
- Delay: It can take years and many medical appointments to receive a formal diagnosis.
- Cost: In the United States, some people may not be able to afford basic healthcare or appointments and screenings with specialty providers to receive a neurodiversity diagnosis. Insurance may sometimes not cover official diagnostic testing with a neuropsychologist.
- Narrow view of autism: Some doctors lack training in neurodiversity-affirming care and may not understand the full range of Autistic people’s experiences. The diagnostic criteria in the DSM-V can be limiting and may result in some Autistic people remaining undiagnosed.
For these and other reasons, there is a growing movement within the Autistic community to promote self-diagnosis. The Association for Autism and Neurodiversity states that “Many people make the decision to seek out a formal, medical diagnosis, while others go through their exploration of self-diagnosis without official testing with a professional. They explain that no formal diagnosis is needed to access the organization’s resources and services for people with autism.
Support options for formally and informally diagnosed people with ASD
It may be beneficial to seek therapeutic support if you are encountering difficulties related to ASD or want to learn more about a neurodiverse identity. However, some symptoms of autism may make in-person therapy less accessible. In these instances, online therapy through a platform like BetterHelp might be a beneficial alternative.
With online therapy, you may not have to worry about navigating the social environment of a doctor’s office or waiting room. You can attend sessions from the comfort of your home and choose how you would like to interact with your therapist, whether via video chat, a phone call, or in-app messaging.
Research indicates that online therapy may be as effective as traditional in-person therapy for neurodevelopmental conditions. One study found that a group of people with ASD reported significant improvements in life challenges and symptoms after completing sessions in online therapy.
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