Deciding whether to seek an autism assessment

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 about 1 in 36 eight-year-olds across 11 US monitoring sites had been identified as autistic. Males were identified about four times as often as females.

However, this gender disparity may be due to differences in presentation or under-diagnosis of autistic females rather than males simply being more likely to be autistic. Newer data suggests this gender gap is closing.

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).

It is worth keeping in mind that the DSM-5 uses deficit focused language when describing autism which many in the autistic community view as further stigmatising autism.

A breakdown of the criteria

The DSM-5 criteria for autism have five parts. An individual must meet all five:

• Criterion A, social communication and interaction: persistent deficits in social communication and social interaction, shown in all three areas listed below.
• Criterion B, restricted and repetitive behavior: restricted, repetitive patterns of behavior, interests, or activities, shown in at least two of the four areas listed below.
• Criterion C, early onset: these characteristics must be present since early childhood.
• Criterion D, impact: they cause clinically significant impairment in social, occupational, or other important areas of current functioning.
• Criterion E, other explanations: they are not better explained by intellectual disability or global developmental delay.

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.

DSM-5-TR (2022) asks clinicians to rate each domain separately. Level 1 means “requiring support”, Level 2 “requiring substantial support”, and Level 3 “requiring very substantial support”.

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.

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 Autistic Traits

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). It involves consciously or unconsciously hiding parts of one’s neurodiversity to ‘fit in’ and avoid stigma. 

Masking can make autism hard to identify. Someone who has become skilled at hiding their autistic traits may be missed entirely.

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.

Measuring Masking and Its Costs

Autistic women and girls report masking more often. It is not confined to them, though.

Hull et al. (2019) built the Camouflaging Autistic Traits Questionnaire (CAT-Q) to measure it.

The self-report scale covers compensation, masking and assimilation. It was tested online with 354 autistic and 478 non-autistic adults.

Masking is also tiring. Hull et al. (2017) surveyed 92 autistic adults online and found that the consequences of masking included exhaustion and threats to self-perception. One participant wrote:

“It’s exhausting! I feel the need to seek solitude so I can ‘be myself’ and not have to think about how I am perceived by others.”

Another described the longer-term cost: “I feel like the weight of a black cloud is hanging on me having to be this fake version of me.” These are the views of a selected group, and not every autistic person masks to the same degree.

What to Expect from an Autism Assessment

A comprehensive, multidisciplinary assessment involving psychologists, psychiatrists, speech therapists, and occupational therapists is required. This process typically includes:

• A detailed review of developmental, medical, and family history.
• Structured observations and standardized interviews using diagnostic tools like the Autism Diagnostic Observation Schedule (ADOS-2) and Autism Diagnostic Interview-Revised (ADI-R).
• Differentiating ASD from other conditions and identifying co-occurring disorders (such as anxiety or ADHD).

Assessments vary slightly by age. Adults are typically assessed through structured interviews and questionnaires about their social interactions, interests, and daily challenges. Children undergo play-based evaluations.

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.

Screening and Diagnostic Tools

No blood test, brain scan, or single behavioral marker can confirm autism. Diagnosis is a clinical judgment drawing on developmental history, direct observation, and standardized instruments.

Screening comes first for very young children. A checklist such as the CHAT (Checklist for Autism in Toddlers) is used at around 18 months and combines parent-report questions with the interviewer’s observations. Screening only flags who needs a full assessment.

Clinicians often add a standardized observation for a formal diagnosis. The best-known example is the ADOS. A trained observer scores responses to structured social “presses”, activities designed to elicit social, communicative, and repetitive behaviors relevant to diagnosis (Lord et al., 1989).

Gotham et al. (2007) revised the ADOS scoring using 1,630 assessments of children aged 14 months to 16 years with autism or other non-spectrum conditions.

The new algorithm combines two domains, Social Affect and Restricted, Repetitive Behaviors, into one score and generally improved predictive value. Predictive value is the chance that a result is correct.

Even good tools have limits. Instruments are judged against a clinician’s best-estimate diagnosis, which is itself a human judgment. Masking and co-occurring conditions can also blur the picture.

After the assessment

Following the assessment, the team gives feedback to the individual and their family. This usually covers:

• The diagnostic findings
• Recommendations for interventions and support services
• Any co-occurring conditions that may need further evaluation or treatment

Co-occurring conditions are common. Simonoff et al. (2008) assessed 112 autistic children aged 10 to 14 from a population-derived UK cohort, and 70% met criteria for at least one additional psychiatric diagnosis. The most common were social anxiety disorder (see autism and anxiety), ADHD, and oppositional defiant disorder.

This matters for assessment. Emotional and behavioral difficulties should not automatically be put down to autism, because anxiety, ADHD, and autistic characteristics can resemble and mask one another.

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.

Is it Worth Getting an Autism Diagnosis?

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

Benefits of an Autism Diagnosis

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

Early support is one route. Rogers et al. (2019) randomly assigned 118 autistic toddlers aged 14 to 24 months to the Early Start Denver Model or community interventions for 27 months.

Language outcomes favored the play- and routines-based model. Developmental quotient, autism severity, and adaptive behavior did not differ significantly between groups.

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

In many places, a formal diagnosis is what unlocks access to services, education plans, and legal protections.

Workplace adjustments are not automatic, though. Day et al. (2025) surveyed 1,212 people in the UK with recent hiring experience about hiring autistic people. Intentions to hire were high, but barriers included limited knowledge about autism and how to make adjustments.

The authors point to employer knowledge and more inclusive hiring practices as the key targets for change.

Drawbacks and Self-Diagnosis

However, a diagnosis is not welcome for everyone. Some individuals worry about stigma 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 personal. It should be made with healthcare providers, considering individual circumstances and goals. Neither choice is wrong.

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. 

I chose to complete a PhD in autism research so being open about being autistic is really helpful in academic situations. However, outside of academia I am more selective about who I disclose to since it is hard to judge the reaction you will get. 

A diagnosis is a Privilege

Depending on what country you live in, obtaining an autism diagnosis can be considered a privilege.

The waiting lists for a diagnosis can be very long, with many having to wait years to be seen in some instances.

Demand keeps rising. Rising identified prevalence (Maenner et al., 2023) has increased demand for specialist assessment.

Policy attention has shifted towards prioritizing groups that diagnostic pathways have long under-served: girls and women, adults, and people without an intellectual disability.

Cost, Awareness, and Who Gets Referred

If you want a private diagnosis, these are often very expensive, meaning that only those who have the means to afford this can access one.

Self-education takes means and time. Those who can reflect on their experiences through an autistic lens are more likely to seek a diagnosis than those who cannot.

Finally, presentation matters. If you present in a way that is non-male and non-white, you may be less likely to be referred because of stereotypical ideas about what autism looks like.

Problems with the DSM Criteria

The DSM-5 criteria give diagnosis a standardized framework. They also have limitations that can affect how accurately autism is identified and understood. Three stand out:

• Language: pathology-based wording centers deficits and can miss strengths and value-neutral traits.
• Gender Bias: criteria built mainly from research on males can miss how autism presents in females and gender diverse people.
• Cultural Factors: social norms, communication styles, and parenting practices differ across cultures and shape how autism is recognized.

Language and Terminology in the DSM-5

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 value-neutral traits associated with autism.

Language choices matter. Bottema-Beutel et al. (2021) argue that the words used in autism research can reflect and perpetuate ableist ideas, whether or not researchers intend this.

Alternatives include naming specific support needs instead of “high-functioning” or “low-functioning” labels, and writing “co-occurring” rather than “comorbid”.

Identity-first language is widely preferred. In a survey of 902 neurodivergent adults in the UK, Pearson et al. (2026) rated terms for likeability and offensiveness.

Identity-first terms such as “autistic person” scored significantly better than person-first ones for most conditions, including autism. Preferences still vary, so an individual’s own choice comes first.

Language also shapes how social differences are framed. Milton (2012) proposed the double empathy problem. On this view, difficulties between autistic and non-autistic people are a “disjuncture in reciprocity between two differently disposed social actors”, not a deficit located only in the autistic person.

Gender Bias in the DSM-5 Criteria

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 capture how autism presents in females or gender diverse individuals.

They may show different behavioral patterns and coping mechanisms, such as masking or camouflaging their autistic traits.

The numbers show the scale of the problem. Loomes et al. (2017) pooled data from 54 studies in a systematic review and meta-analysis. The male-to-female ratio was closer to 3:1 than the traditionally cited 4:1.

Method mattered. Studies that screened whole populations reported lower ratios than those relying on clinical referrals. This points to ascertainment bias, where autistic girls are referred and diagnosed less often than boys with similar difficulties. Many autistic girls go undiagnosed.

Cultural and Socioeconomic Factors in Diagnosis

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.

References

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Other resources

• Making an Autism Spectrum Disorder Diagnosis: CDC
• How To Get An Autism Assessment: NHS
• Guidance from The National Autistic Society
• Embrace Autism for online tests, including the Camoflauging Autism Questionnaire (CAT-Q) and Autism Spectrum Quotient (AQ)