Receiving an autism diagnosis as an adult

Key Points

• ASD occurs in all groups of society, no matter your age, race, ethnicity, or socioeconomic background.

• Those with milder forms of ASD, particularly adults, may have missed out on diagnosis in their childhood.

• Receiving an ASD diagnosis later in life can bring about a range of emotions, from grief and shock, to relief and joy.

Subtle symptoms

Thanks to advances in ASD research over the past 20 years, it is now much easier to identify the subtler symptoms of autism, and at an earlier age. This means that people who were undiagnosed a few decades ago may have been diagnosed with ASD today had they received the same testing.

Instead, many people living with ASD were thought to have just been introverted or shy. Difficulty making friends, forming intimate relationships, reading people’s faces, and finding work, were put down to being antisocial, rather than linked to a medical condition. As a child, as well as being thought of as ‘shy’, people diagnosed with ASD tell of being labelled ‘disruptive’, ‘difficult’ or ‘naughty’ because of their behaviour.

Symptoms don't mean you're on the spectrum

Autism is a complex disability, and even though you might be thinking these symptoms apply to yourself or someone you might know, it isn’t necessarily autism – there are many factors such as your environment and personality which shape who you are as a child and into adulthood.

Autism often presents quite similarly to other disorders such as Obsessive Compulsive Disorder (OCD), Schizophrenia, Depression, Anxiety, Intellectual Disability, and Sensory Processing Disorder. As it is so complex, it means it is often quite hard to define which experiences and symptoms may relate to ASD, and specific guidelines are used to distinguish autism from other conditions.

Diagnosing an adult with ASD isn’t simple

While a number of methods have been developed to diagnose children with ASD (through observation and questionnaires), there is surprisingly still no standard way to diagnose an adult.

At this stage, diagnosis is often reached through a range of interviews with specialists such as speech pathologists, psychologists or occupational therapists and tests which look at a person’s intellectual functioning, social adaptability, communication skills, and a childhood history of ASD traits. This means that diagnosis as an adult can be challenging.

For example, it can be difficult to remember details from your childhood that would provide clues to ASD – and parents are often not around to help fill in the blanks. Many adults have also developed strategies to compensate for or ‘cover up’ their traits, so it can be difficult for an interviewer to note certain behaviours.

A diagnosis can be life-changing for some

So if it’s difficult to diagnose and distinguish from other disabilities, why would people bother trying to get a diagnosis? A common story from adults diagnosed with ASD is that it can come as a relief to have an answer. For lots of people, it’s helpful just to know, rather than to suspect or assume.

Some people have described having a ‘lightbulb moment’ where they finally understood why they feel the way they do. An official diagnosis can help answer a lot of questions someone might have about themselves. It can also help those around them such as their family, friends or employer, to understand the difficulties they experience, and how they can make things a little easier.

There have also been many cases where people have been misdiagnosed with a mental illness or other disability, such as social anxiety disorder or OCD. Knowing about your autism diagnosis opens the door to appropriate treatments and services (some of which you may not even know about). Your doctor can also help you tap into autism support groups and social skill training. All of which can help make the day-to-day that bit easier.

It’s also important to consider that an adult’s diagnosis of autism can often follow their child’s diagnosis of autism or that of another relative. This ‘double whammy’ can be extremely distressing to someone who has to cope simultaneously with both diagnoses. Counselling, or joining a support group where they can talk with other people who face the same challenges, can be helpful.

Some people also believe a diagnosis won’t change anything and will be an unhelpful label, so don’t wish to ‘waste time’ trying to seek one out. Some adults with ASD are happy self-diagnosing and finding their own ways to adapt. It’s up to each person to decide whether a diagnosis would be helpful or not.

So, where to next if you are seeking a diagnosis?

Seeking a diagnosis is completely up to the individual but if it’s something you or someone you know would like to explore, the best first step is to talk to your General Practitioner (GP).

Your GP will usually refer you to a Clinical Psychologist or Psychiatrist for consultation. From there, you’ll generally be asked lots of questions about your childhood, experiences at school, and the present day. They may also do some psychological or psychiatric testing before making a formal diagnosis.

A Speech Pathologist (also known as a Speech Therapist) may also be consulted to assess your social communication skills. All of this information will be used to help make a diagnosis.

It’s important to remember that autism is a complex disability and as far as the current research is concerned, there’s no single cause. Instead, it’s likely to be due to a combination of environmental and genetic factors.

If you are diagnosed with autism, you may feel relieved to know why you feel or behave the way you do. A diagnosis may also help you and your family to understand and cope with the challenges you face.

It’s also possible you may be eligible for NDIS funding. If you are assessed as having ASD with level 2 severity (requiring substantial support) or level 3 severity (requiring very substantial support), you may qualify for NDIS funding. However, not all individuals with autism spectrum disorder will be approved for NDIS funding, particularly those with milder forms of ASD that have been diagnosed later in life. For further details and information on eligibility visit the NDIS eligibility checklist.

Related content:

Recognising autism in boys and girls – what’s the difference?
Sharon’s story – a journey of ups and downs, reaching great heights
What is autism?