Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder characterized by differences in social communication and interaction, as well as restricted and repetitive patterns of behavior, interests, or activities.

Autism is diagnosed through a comprehensive assessment by a multidisciplinary team, evaluating social communication, interaction, and restricted/repetitive behaviors using the DSM-5 criteria. The process involves reviewing developmental history, conducting structured observations and interviews, and ruling out other conditions.

In 2020, estimates suggested that 1 in 36 children in the United States are autistic, with males being four times more likely to be identified than females. However, this gender disparity may be due to differences in presentation or underdiagnosis of autistic females rather than males simply being more likely to be autistic.

As our understanding of autism is increasing, the number of people receiving a diagnosis may also increase.

How is Autism Diagnosed?

Autism is diagnosed based on the presence of specific behaviors and characteristics outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5).

The DSM-5 criteria for autism consist of two main categories: persistent deficits in social communication and social interaction (Criterion A) and restricted, repetitive patterns of behavior, interests, or activities (Criterion B).

To meet the diagnostic criteria for autism, an individual must exhibit all three symptoms in Criterion A and at least two of the four symptoms in Criterion B.

These symptoms must be present since early childhood (Criterion C) and cause clinically significant impairment in social, occupational, or other important areas of current functioning (Criterion D). Additionally, the symptoms should not be better explained by intellectual disability or global developmental delay (Criterion E).

The DSM-5 also includes severity specifiers to indicate the level of support needed based on the individual’s adaptive functioning, as well as specifiers for intellectual impairment and language impairment.

It is important to note that while the DSM-5 criteria provide a framework for diagnosis, the presentation of autism can vary significantly among individuals.

So, although someone may be described as having low support needs because they can work full-time and live independently, this does not take away from their immense struggles in other areas of life. Equally, if someone is described as having high support needs, this does not take away from their capabilities and strengths.

Autistic individuals may exhibit a range of characteristics and behaviors that vary in intensity and presentation. The following are examples of how autism may present in individuals that an assessor may look for:

Social Communication and Interaction:

Difficulties with social-emotional reciprocity, such as challenges in initiating and maintaining conversations, and reduced sharing of interests and emotions
Differences in nonverbal communication, including in eye contact (e.g., difficulty maintaining eye contact), limited facial expressions, and difficulties understanding and using gestures and body language
Challenges in developing, maintaining, and understanding relationships, such as adjusting behavior to suit various social contexts, making friends, and showing interest in peers

Restricted and Repetitive Patterns of Behavior, Interests, or Activities:

Stereotyped or repetitive motor movements, use of objects, or speech, such as hand flapping, lining up toys, echolalia (repeating words or phrases), and idiosyncratic language
Insistence on sameness, inflexible adherence to routines, or ritualized patterns of behavior, such as extreme distress at small changes, difficulties with transitions, rigid thinking patterns, and need for predictability
Highly restricted, fixated interests that are high in intensity or focus, such as strong attachment to unusual objects or excessively narrow interests
Hyper- or hypo-reactivity to sensory input or significant interest in sensory aspects of the environment, such as apparent indifference to pain or temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, and visual fascination with lights or movement

It is essential to note that the signs of autism can vary significantly among individuals and may change over time as they develop and learn new skills. Some autistic individuals may exhibit more subtle signs, while others may have more pronounced characteristics.

Additionally, the presence of these signs and how noticeable they are can be influenced by factors such as cognitive abilities, language skills, and co-occurring conditions.

Masking symptoms

It should also be noted that ‘masking’ is very common in autistic individuals, especially if they are diagnosed later in life.

Masking is a strategy often used by neurodivergent individuals (e.g., those with ADHD) to consciously or unconsciously hide parts of their neurodiversity as a way to ‘fit in’ and be accepted.

Masking can, therefore, make it very difficult to identify autism if someone has become so skilled at hiding their autistic traits. An example of masking can be to force eye contact and display ‘socially appropriate’ facial gestures during conversations, even though it feels unnatural to do so.

The Camouflaging Autistic Traits Questionnaire (CAT-Q) may also be used during the diagnostic process to identify autistic individuals who may not meet the criteria due to their ability to mask their autistic traits.

During my own autism assessment, I was asked to complete the CAT-Q probably because I had mentioned engaging in specific masking behaviors, and it is possible I was unintentionally masking during the assessment.

What to Expect from an Autism Assessment

A comprehensive diagnostic evaluation for autism typically involves a multidisciplinary team of experienced specialists, including physicians, psychologists, speech-language pathologists, and occupational therapists.

The assessment process may vary depending on the individual’s age and the specific clinical setting.

The evaluation usually begins with a thorough review of the individual’s developmental, medical, and family history. Caregivers or family members may be interviewed to gather information about the individual’s early development, social interactions, communication skills, and behavioral patterns.

Structured observations and assessments are conducted to evaluate the individual’s social communication, social interaction, and behavioral characteristics.

Standardized tools, such as the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R), may be used to gather information and assess the presence of autism symptoms.

Throughout the assessment process, the multidisciplinary team will consider differential diagnoses and rule out other possible explanations for the individual’s symptoms. The team will then integrate the information gathered from various sources to determine whether the individual meets the DSM-5 criteria for autism.

Child’s assessment

For children, the assessment may involve more play-based and observational methods to evaluate their social communication, play skills, and interactions with caregivers and peers.

Cognitive, language, and adaptive functioning assessments may also be administered to determine the child’s developmental level and identify any co-occurring conditions.

Adult’s assessment

In adults, the assessment process may rely more heavily on self-report, interviews with family members or caregivers, and a review of past medical and educational records.

Assessments of cognitive abilities, adaptive functioning, and mental health conditions may be conducted to comprehensively understand the individual’s strengths and challenges.

During my autism assessment, I was asked questions about a lot of areas of my life. I was asked questions about relationships, how I communicate with others, my specific interests, what I enjoy doing in my free time, how I interpret other people's emotions, and what I may struggle with, to name a few. I would recommend writing notes of specific things you want to mention before you attend your assessment so that you do not forget anything.

After the assessment

Following the assessment, the team will provide feedback to the individual and their family, discussing the diagnostic findings, recommendations for interventions and support services, and any co-occurring conditions that may require additional evaluation or treatment.

Ongoing monitoring and follow-up may be necessary to ensure that the individual receives appropriate support and accommodations as they navigate various stages of life.

Comorbidities with Autism

Autistic individuals frequently present with co-occurring psychiatric and medical conditions, which can complicate the diagnostic process.

Common comorbidities include intellectual disability, attention-deficit/hyperactivity disorder (ADHD), anxiety disorders, depression, obsessive-compulsive disorder (OCD), and epilepsy.

The presence of these comorbidities can make it challenging to determine whether an individual’s symptoms are primarily due to autism or another condition. For example, social difficulties may be attributed to social anxiety disorder rather than autism.

Before considering that I could be autistic, I had struggled with anxiety and depression throughout my life. Specifically, I was very socially anxious. Looking back, I think I was socially anxious because I'm autistic. I think often there are a lot of instances where different conditions interact and influence each other, and it all becomes very messy and hard to determine what is causing what.

A comprehensive assessment that considers the onset, course, and nature of an individual’s symptoms is essential for accurately identifying and differentiating between autism and other disorders. Collaborative care between healthcare providers is crucial for managing the complex needs of autistic individuals and comorbid conditions.

Is it Worth Getting an Autism Diagnosis?

Obtaining an autism diagnosis can have both benefits and drawbacks for individuals and their families.

For children, an early diagnosis can lead to timely access to interventions and support services, which may improve long-term outcomes.

A diagnosis can also help families better understand their child’s unique needs and advocate for appropriate accommodations in educational and social settings.

For adults, a diagnosis may provide a sense of relief and validation, as well as access to support services and accommodations in the workplace or higher education settings.

However, some individuals may worry about the potential stigma associated with an autism diagnosis or feel that a label does not fully capture their experiences.

Some people may self-diagnose as autistic for many reasons, including financial barriers to accessing a diagnosis or long waiting lists.

Ultimately, the decision to pursue a diagnosis is a personal one that should be made in consultation with healthcare providers and with consideration of individual circumstances and goals.

For me, I mainly sought a diagnosis to learn more about myself. I had a lot of unanswered questions when reflecting on my life, and I wondered if autism was the key to answering them. Now that I have a diagnosis, I feel that my life actually makes sense.

Problems with the DSM Criteria

While the DSM-5 criteria for autism provide a standardized framework for diagnosis, there are several concerns and limitations associated with these criteria that may impact the accurate identification and understanding of autism.

Language and terminology:

The DSM-5 uses language that is often confusing and pathology-based. By focusing on deficits and negative symptoms, the manual may not adequately capture the unique strengths and positive traits associated with autism.

This deficit-based language can contribute to stigma and misconceptions about autism, rather than promoting a neurodiversity-affirming perspective.

Heterogeneity of autism:

Autism is a highly heterogeneous condition, with a wide range of presentations and varying levels of severity across individuals.

The DSM-5 criteria may not fully capture this diversity, leading to potential misdiagnosis or under-diagnosis of individuals who do not fit the “typical” profile of autism.

The use of severity specifiers (i.e., level 1, 2, or 3) may also oversimplify the complex nature of autism and fail to account for the unique challenges and support needs of each individual.

Gender bias:

The DSM-5 criteria for autism were primarily developed based on research and clinical observations of males with autism.

As a result, the criteria may not adequately capture the unique presentation of autism in females, who often display different behavioral patterns and coping mechanisms, such as masking or camouflaging their autistic traits.

This gender bias can lead to the under-diagnosis or misdiagnosis of autism in females.

Cultural and socioeconomic factors:

The DSM-5 criteria for autism may not adequately consider cultural and socioeconomic factors that can influence the expression and recognition of autistic traits. Differences in social norms, communication styles, and parenting practices across cultures may affect how autism is perceived and diagnosed.

Additionally, individuals from disadvantaged socioeconomic backgrounds may face barriers to accessing appropriate diagnostic services, leading to delayed or missed diagnoses.

Co-occurring conditions:

As already mentioned, many autistic individuals also have co-occurring mental health conditions, such as anxiety disorders, depression, and ADHD. The DSM-5 criteria do not provide clear guidance on distinguishing between symptoms of autism and those of co-occurring conditions, which can complicate the diagnostic process and lead to misdiagnosis or under-diagnosis of autism.

Reliance on behavioral observations:

The DSM-5 criteria heavily rely on observable behaviors and characteristics, which may not fully capture the internal experiences and challenges faced by individuals with autism.

Some autistic individuals, particularly those with strong verbal abilities, may learn to mask or compensate for their autistic traits, making it difficult for clinicians to accurately assess and diagnose autism based on behavioral observations alone.

Limited incorporation of neurodiversity perspective:

The DSM-5 criteria for autism do not fully incorporate the neurodiversity perspective, which views autism as a natural variation in human neurocognitive functioning rather than a disorder or deficit.

By focusing primarily on deficits and impairments, the DSM-5 may not adequately recognize the strengths, talents, and unique perspectives of autistic individuals.

While the DSM-5 criteria for autism serve as an important tool for diagnosis and research, it is crucial to recognize their limitations and the need for a more comprehensive, neurodiversity-affirming approach to understanding and supporting autistic individuals.

Ongoing research, input from the autism community, and a shift towards a strength-based perspective can help improve the diagnostic process and promote a more accurate and inclusive understanding of autism.

References

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How Is Autism Diagnosed & Is It Worth Seeking A Diagnosis?