The journey to a diagnosis of Autism is a unique experience and can often be long, confusing, and overwhelming. Because Autism presents differently for different people, and there is no official medical test for it, healthcare professionals must individually assess a person’s development and behavior over time to make a diagnosis.

Although some people receive a diagnosis as early as 18 months old (or even younger in some cases), the variability in Autism symptoms means that for some people, diagnosis is not achieved until much later in life. The age of diagnosis may also be affected by limitations such as cost and accessibility of care, as well as social stigma and stereotypes associated with Autism. As a result, not everyone may be able to or wish to get an official diagnosis for themselves or their child.

Do you need an ASD diagnosis?

Some people identify as Autistic through self-diagnosis, and although not everyone with Autistic traits requires support, there are options available for undiagnosed or self-diagnosed Autistic people.

However, some benefits that come from getting an official diagnosis. It may help an Autistic person feel validated and better understand their own experiences. A diagnosis can also be crucial for access to specific interventions, supports, and services.

Where do I start?

The journey to getting an Autism diagnosis involves several phases. While some people’s experiences leading up to a diagnosis may differ, we’ve listed some of the common steps that parents, guardians, and the healthcare team may take when assessing someone for an official diagnosis of Autism.

Step 1: Developmental monitoring

When we’re young, our parents and loved ones naturally observe how we develop by watching our behaviors and how we interact with the environment and others. This is called ‘developmental monitoring’, and it’s important for making sure that children reach milestones and behave in a way that is expected for their age group. It’s often during this early childhood period when parents may start noticing signs of Autism.

The CDC outlines a brief checklist for developmental milestones from 2 months to 5 years old, which you can see here. If a child is not meeting these milestones, or is showing any behaviors of concern, it is essential to discuss this with a healthcare professional, such as a pediatrician or family medicine doctor.

During appointments, healthcare professionals may ask parents and guardians questions about any behaviors or delayed milestones they might have noticed during this monitoring period, to gauge whether the child may be showing signs of Autism. They may even interact and play with the child to assess their development.

A handy resource

Developmental monitoring can be difficult to trackwithout a record. Human Health is a free mobile app that helps you track signs and symptoms daily, and any treatments or interventions you may be using.

You can download the app here, or by searching for ‘Human Health’ on the App Store or Google Play.

Step 2: Developmental screening

At certain times throughout childhood, children may be more formally assessed in their development, to understand better whether the child may be showing signs of Autism or other developmental conditions. These screenings can be performed by various healthcare professionals, including doctors and nurses, and in some cases may also be completed by an educator or community worker. It’s important to note that a screening assessment is not equivalent to a diagnosis, but it can provide further insight into a person’s condition and symptoms.

A screening assessment may be a questionnaire or survey that asks the parent or guardian specifics about things like the child’s movement and language skills, the way that they play and interact with others, and their emotions. Some screening tools will assess general developmental delays. Still, there are also screening assessments specific to Autism, including the Modified Checklist for Autism in Toddlers (MCHAT), and the Screening Tool for Autism in Toddlers and Young Children (STAT).

These screenings are usually recommended at around 9, 18, 24, and 30 months of age. If there is cause for concern, or if there is a history of Autism or other developmental conditions within the family, they may be conducted at other times.

What if I’m seeking a diagnosis as an adult?

Your parents or other people who spent lots of time with you during your childhood, may be able to recount your development to your healthcare professional, and tell them if you missed any significant milestones or showed signs of Autism at a young age.

It may be slightly more challenging for a healthcare professional to diagnose you with Autism without this information, but it is not impossible. Your healthcare team may also assess your behaviors, thoughts and emotions as an adult to form an official diagnosis.

Step 3: Moving towards a diagnosis

If the results of developmental monitoring and screening indicate that a child or adult may be showing signs of Autism, a healthcare professional may recommend a specialist for further assessment. Some specialists include a developmental pediatrician, psychologist, speech-language pathologist, neurologist, geneticist or occupational therapist.

These specialists may ask parents, guardians, and/or patienst to complete further questionnaires about their development and behavior. These questionnaires are designed to assess whether the patient has Autism specifically. Some examples of these questionnaires include the ADI-R (Autism Diagnosis Interview – Revised), the ADOS-G (Autism Diagnostic Observation Schedule – Generic) and the GARS-2 (Gilliam Autism Rating Scale, Second Edition).

Formally diagnosing someone with Autism means they have traits or symptoms that are known to be associated with the condition. These have been identified and studied over time through scientific and medical research.

However, as Autism is a spectrum condition and does not present the same way in everyone, it can sometimes be challenging to reach a definitive diagnosis based on standard criteria. Although Autism does have some signs that show in a majority of people with the condition, there are a couple of reasons why many people are diagnosed later in life. Some people may not be considered to meet the criteria for an Autism diagnosis in early childhood, based on the severity of their symptoms at that time. There are several other conditions that tend to occur in people who have Autism, and some symptoms of Autism can also be confused for signs of other developmental or psychiatric conditions. These co-occurring and similar conditions can make it harder to make an accurate diagnosis of Autism.

While specialists trained to diagnose Autism and other developmental conditions are aware of this, it is not uncommon for people with Autism to be misdiagnosed or remain undiagnosed. Further research is being conducted to minimize the occurrence of these cases and improve the diagnostic criteria for Autism.

What next?

Once a formal diagnosis has been made, specific interventions, such as certain therapies, medications, or other supports including individual education plans or workplace accommodations, may become accessible.

These supports may help moderate the impact that Autistic traits and symptoms can have on how a person lives and functions.

There are also a wide variety of support groups available for both parents and guardians, as well as people with Autism, that can be found online. You can find a list of them here.

Resources:

https://www.cdc.gov/ncbddd/autism/screening.html

https://www.cdc.gov/ncbddd/autism/hcp-screening.html

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