Receiving an Autism diagnosis as an adult, is it really that difficult?

Receiving an Autism diagnosis as an adult, is it really that difficult?

As more celebrities and public figures open up and disclose their autism diagnosis, we have to ask, is adult diagnosis only accessible to those with the financial means or is it accessible for every one?

Wentworth Miller recently revealed he had been formally diagnosed as autistic, saying,

“Like everyone, life in quarantine took things from me. But in the quiet/isolation, I found unexpected gifts.” As of this fall, it will be one year “since I received my informal autism diagnosis. Preceded by a self-diagnosis. Followed by a formal diagnosis,”

Miller also acknowledge how flawed the system is for adults seeking diagnosis,

“It was a long, flawed process in need of updating. IMO. I’m a middle-aged man. Not a 5-year-old”

It is true, adult diagnosis is not accessible for many. It is time consuming and can be expensive. And, if you do have time and the money you are often confronted by an outdated medical model of Autism which is based on male children.

Is financial assistance available for adult diagnosis?

Self-diagnosis of autism is increasingly common among adults, thanks to the improved availability of medical, scientific information about autism that is available online and in print publications. It may still be important if you self-diagnose to seek guidance from your primary care giver as there are a range Medicare funded supports that you are able to access.

  • Medicare rebates may be available for up to ten individual and ten group allied mental health services per calendar year
  • one-on-one sessions with a psychologist
  • group psychologist sessions
  • sessions with a social worker or another allied health practitioner.

Your doctor can help you find experts in your area. While these rebates are available, it can still cost anywhere from a few hundred to thousands of dollars, depending on what assessments and tests are required.

In Australia, there is only one public diagnosis facility and that is through Autism Western Australia. This no cost service and is available for adolescents and adults aged 13-30 years of age. You will still need a referral from your GP or Consultant Psychiatrist.

What does adult diagnosis look like?

If you do choose to pursue a formal diagnosis it is important to get a full assessment and diagnosis from a qualified and reliable professional or team of professionals using proper assessment tools.

There are a variety of screening and assessment tools that may be used during the adult assessment process to determine a diagnosis of autism spectrum disorder according to DSM-5 or ICD-10 criteria.

These may include but not limited to:

  • The Autism Diagnostic Observation Schedule (ADOS)
  • The Autism Diagnostic Interview – revised (ADI-R)
  • The Social Communication Questionnaire (SCQ).

In addition, diagnosing professionals often administer cognitive tests and other assessments to gather information about the person’s development and day to day functioning. You may also be required to under go medical assessment to rule out underlining medical issues.

In late 2018 the National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia was released. The guidelines aim to provide a consistent approach for autism assessment and diagnosis across the country, relieving stress, confusion and lengthy delays for individuals on the spectrum and their families.

Should I pursue an adult diagnoses?

For many, seeking a formal diagnosis may not be an option due to cost or they may not feel it is relevant.

For those who are able to access a diagnosis, it can unlock financial support from the NDIS, a positive step forward in gaining assistance for sensory issues and support with employment, gaining new skills and even mental health care. Receiving a diagnosis can also be validation, and ease that feeling of “Something is wrong” it can give clarity and self acceptance. It can also assist family members with valuable knowledge and help for a more inclusive and accepting environment.

It has been said that adult diagnosis is a privilege only available to a few who have the financial means. It is always advisable to talk to your GP and discuss whether the Medicare rebates are available, at the very least your GP can assist in directing you to affordable supports. And if you should encounter resistance or feel uncomfortable, you should always seek a second opinion.

But ultimately we all should be kind. It is a fact that every person who has received a formal autism diagnosis was once an undiagnosed autistic person.

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