How to get diagnosed with autism as an adult – the important steps to take

Paddy and Christine McGuinness discusses their children's autism

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Autism is more properly called autism spectrum disorder because the condition covers a vast range of symptoms on a scale of severity. If you’ve managed to get to adulthood without being diagnosed and you are showing signs of autism, you can still get diagnosed. chatted to Dr Deborah Lee from Dr Fox Online Pharmacy to find out how to get diagnosed with autism as an adult.

About 700,000 adults and children have a diagnosis of autism in the UK and the incidence of autism in children has been rising rapidly over the past 10 years.

The symptoms vary so much that autism is often missed as a child.

Dr Lee said: “Not all those with ASD have low intelligence. Some have high-functioning ASD and can mask their symptoms.

“They may be very bright and have well-developed reading, speech, and language skills.

“Those with high functioning ASD may appear to be ‘normal’ but have high levels of anxiety and social difficulties as their major manifestation.

“A diagnosis of high-functioning autism has only been possible since it was classified in 1994.

“There are plenty of adults today, who were children before 1994, who could not have been given the diagnosis.”

On top of this, sometimes children are diagnosed with conditions such as ADHD, obsessive-compulsive disorders or social anxiety disorders, and their autism goes undetected.

Autism is often overlooked in women (male cases outnumber female cases 4:1) and those from ethnic minority backgrounds.

Dr Lee explained: “Boys and men have been thought to be far more commonly affected by autism than girls or women.

“However, recent research suggests this may not be clear-cut. Girls have some behavioural characteristics – such as shyness, disliking public speaking etc – which have been put down to them being female in the past but could actually be due to autism that has been overlooked.

“Autism is also often overlooked in ethnic minorities, potentially because they find it more difficult to access healthcare, or because they have different cultural norms.”

Autism is characterised by a wide range of associated problems and mental conditions, but those with the condition mainly tend to have:

  • Difficulty communicating and interacting with other people
  • Find it hard to stand in other people’s shoes and understand how they think or feel
  • Dislike large gatherings, bright lights, and loud noise
  • Have increased anxiety in social situations
  • Tend to think things over and over and perseverate

Dr Lee added: “They may also suffer from difficulty with concentration – Attention Deficit Disorder (ADHD), and/or have associated anxiety, depression, or epilepsy.

“Around half of ASD sufferers have a learning disability – often dyslexia and dyspraxia.

“Asperger’s syndrome is a form of autism, but patients often have better cognitive skills.”

If you’re an adult and you think you might be autistic, it’s a good idea to try and get a positive diagnosis.

According to Dr Lee, a diagnosis may help to explain a lot of life’s traumas and mishaps.

She said: “By appreciating the role of autism in your life, you can accept what has happened to you, make others aware, and take steps to improve things.

“You may find this throws another diagnosis into doubt – for example – you are not schizophrenic after all.

“You are likely to be given extra time in assessments and exams, and you may be able to claim certain financial benefits.”

How to get diagnosed with autism as an adult

A full assessment for adults with possible ASD is conducted by a Clinical Psychologist and a Speech and Language Therapist.

The diagnosis process includes:

  • Taking a full history from you and a relative or friend who goes with you
  • You will discuss the results of specific, detailed questionnaires sent to you in the post before the appointment
  • The Autism Diagnostic Observation Schedule is completed – this is a standardised assessment tool for diagnosing ASD – which means being filmed on video
  • Information that is obtained from other prominent people in your life such as a partner, employer, or carer.

The NHS site recommends seeing your GP if you think you may be autistic, but you will only get a formal diagnosis from a Speech and Language Therapist through an autism assessment.

Being diagnosed with autism as an adult isn’t a cause for concern, and adults with the condition can live happy and rewarding lives.

Dr Lee said: “Getting an autism diagnosis can help make sense of difficulties in earlier life, such as difficulty making friends at school, bullying, low self-esteem, and loneliness.”

For some real-life experience of those, this has happened to – click here.

If you get a positive diagnosis, your GP and other agencies involved in caring for you will be diagnosed.

Your family and friends need to be made aware of the diagnosis and what this means, so they can do what they can to help you.

Getting informed is key – so it’s a good idea to make use of The National Autistic Society website ( You can phone the free helpline on 0808 800 4104.

You may want to join an autism support group. You can find the nearest one to you on the NHS website by clicking here.

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