What pisses me off about Simon Baron-Cohen’s Autism Assessment and Clinical Guideline Recommendations

Update 2020: 

Thanks to input from Autistic adults and researchers (amoung other usual interested parties) Autism Co-operative Research Centre (Autism CRC), supported by the National Disability Insurance Agency (NDIA), produced a detailed and basic version of the “National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia”.

I just saw another of the many posts in a secret women’s Autism support group asking where on earth can she find a Psychiatrist that will actually assess her for Autism.

Here is my reply:

“No idea mate. The two I saw in Brisbane in the past maybe 5 years were a) didn’t read my referral, didn’t bother to assess me, and his only report was a private letter to my GP (that I couldn’t give to any services),
b) a guy in who literally said “You’re not getting an assessment until you’ve seen a speech pathologist.” and “I don’t think you have Autism.””

Here is the thing – if someone is asking for an Autism Assessment, they are:

* At the end of their rope,

* Possibly in the pits of depression or Autistic Burnout,

* Unable to cope with the responsibilities and tasks in their lives.

Dear Dr: Asking for a comprehensive Autism Assessment


If you need an Advocate to talk to your nurse, GP, or other health professional, I recommend Kathy from Access Health Autism.


These initial recommendations by Simon Baron-Cohen in the document titled “Autism spectrum disorder in adults: diagnosis and management
Clinical guideline*” are utterly simplistic AND exclusionary.

*(Published: 27 June 2012

Info in the comprehensive assessment section should be used for EVERY SINGLE PERSON asking for an assessment.

My recommendations:

1. Skip to NICE 1.2.8 Complex

2. Do a comprehensive assessment including history of bullying at school, being excluded, internalised shame body language, having sex with reluctant (not enthusiastic) consent, anorexia and bulimia, Ehlers-Danos Syndrome (EDS), and every assessment idea in his document with NOTHING LEFT OUT.

3. Give the person a written (minimum three (3) page assessment) result with explanations. They will need this urgently and in the future to be supported.

“Dear Dr: Re-requesting support, and my communication difficulties”



Quote from “Autism spectrum disorder in adults: diagnosis and management Clinical guideline.”



1.2.8 To aid more complex diagnosis and assessment for adults, consider using a formal assessment tool, such as:

the following tools for people who do not have a learning disability:

the Adult Asperger Assessment (AAA; includes the Autism-Spectrum Quotient [AQ] and the Empathy Quotient [EQ])[6]

the Autism Diagnostic Interview – Revised (ADI-R)[7]

the Autism Diagnostic Observation Schedule – Generic (ADOS-G)[8]

the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)[9]

the Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)[10]

the following tools in particular for people with a learning disability:

the ADOS-G

the ADI-R.

1.2.9 To organise and structure the process of a more complex assessment, consider using a formal assessment tool, such as the Diagnostic Interview for Social and Communication Disorders (DISCO)[11], the ADOS-G or the ADI-R.

1.2.10 During a comprehensive assessment, take into account and assess for possible differential diagnoses and coexisting disorders or conditions, such as:

On writing my own mental health plan


other neurodevelopmental conditions (use formal assessment tools for learning disabilities)

mental disorders (for example, schizophrenia, depression or other mood disorders, and anxiety disorders, in particular, social anxiety disorder and obsessive–compulsive disorder)

neurological disorders (for example, epilepsy)

physical disorders

communication difficulties (for example, speech and language problems, and selective mutism)

hyper- and/or hypo-sensory sensitivities.

1.2.11 Do not use biological tests, genetic tests or neuroimaging for diagnostic purposes routinely as part of a comprehensive assessment.

1.2.12 During a comprehensive assessment, assess the following risks:

self-harm (in particular in people with depression or a moderate or severe learning disability)

rapid escalation of problems

harm to others


breakdown of family or residential support

exploitation or abuse by others.

Develop a risk management plan if needed.

1.2.13 Develop a care plan based on the comprehensive assessment, incorporating the risk management plan and including any particular needs (such as adaptations to the social or physical environment), and also taking into account the needs of the family, partner or carer(s).

1.2.14 Provide a ‘health passport’ (for example, a laminated card) for adults with autism, which includes information for all staff about the person’s care and support needs. Advise the person to carry the health passport at all times.

Dear Dr: Presenting at an emergency ward


1.2.15 As part of a comprehensive assessment consider developing a 24-hour crisis management plan, where necessary in conjunction with specialist mental health services, which should detail:

the likely trigger(s) for a crisis

the nature and speed of the reaction to any trigger(s), including details about the way in which autism may impact on a person’s behaviour leading up to and during a crisis

the role of the specialist team and other services (including outreach and out-of-hours services) in responding to a crisis

advice to primary care professionals and other services on their responsibilities and appropriate management in a crisis

advice for families, partners and carers about their role in a crisis

the nature of any changes or adaptations to the social or physical environment (see recommendation 1.1.8) needed to manage a crisis.


Etc, etc, etc

It is a big but life saving document.

If you need an Advocate to talk to your nurse, GP, or other health professional, I recommend Kathy from Access Health Autism.