An exploration of the evolution of modern autism assessment and the role of ongoing autism education, and why we should omit "treatment" from clinical lexicon. Read now.
Unpacking Autism assessment and treatment
The timeline that outlines the progression of our clinical understanding of autism from the moment the condition was first recognised in the 1940s to where we’re at today is telling: it took us a little while to understand autism like we do now.
Albeit at a steady pace, we’ve since come a long way in our understanding of autism’s potential causes, and how it’s assessed and diagnosed. Initially, autism was theorised to be a subset of schizophrenia and it was a condition that was marked with clinical finality — autism wasn’t initially viewed across a spectrum or as a range of neurodevelopmental conditions like it is today.
We’re re-establishing the way we approach autism assessment, which is outlined by the recent release of Australia’s National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders, and according to Dr Anne Chalfant, clinical psychologist and managing director of Annie’s Centre, there remains work to be done in the area of differential diagnosis to really shore up our end-to-end assessment of autism.
“Where we’re at now is we’ve just gone through what was meant to be a recalibration or a re-set in our focus points with assessment and our processes, and that was mostly through the development of the national guidelines for autism spectrum disorder and the work that was done there.
“So, these guidelines came about because we are finding that we’re getting better at picking up on what autism spectrum disorder (ASD) is more broadly, and so our sensitivity with the way we may assess clients and the tools that we might use are improving, but our specificity and our ability to look at this issue of differential diagnosis...is still not very strong, however we are improving. But it’s still a relative weakness in the overall assessment of ASD and the diagnostic guidelines were very much focused on trying to address that in one way.”
Standardised assessment tools are valuable, but to be effective they need to be part of a wider clinical strategy
Dr Chalfant says that there hasn’t been a sizeable shift just yet in terms advancements in diagnostic tools, but notes that there is sound research that suggests that some of the standardised tools that are leveraged today are effective as part of a wider, more comprehensive assessment and diagnostic process, but shouldn’t be leveraged as the clinical be-all and end-all.
“I get concerned when I get reports that come across my desk from clinicians who have done an autism diagnostic observation schedule (ADOS) and have given a diagnosis on that basis only, they are meant to be used as one part of a more comprehensive assessment process.
“We still regard those tools as the gold standard in terms of standardised assessment of ASD, but they're not meant to be an assessment in and of themselves. Where we’re at now is having a tighter structure around our approach to assessment and what should and should not be included in assessment, and who should and should not be a part of ASD assessment at different stages, as well as what tools we should rely on as a part of that process – again, as a part of the process, not to be the only method of assessment.”
We’re moving toward more progressive assessment and the national guidelines may be the catalyst
The release of the national autism guidelines is a sign of a shift towards progressive assessment, says Dr Chalfant, and the next step to put these guidelines into action is the distribution of a tool kit to guide clinicians on implementation. Dr Chalfant says that the release of videos, tip sheets and explainer content will help clinicians better understand the set of guidelines, put them into practice and move forward with advancements in autism assessment that enable a more effective, and indeed individualised, approach.
Dr Chalfant says that, for psychologists, assessment should be thorough and rounded, and should include:
- Screening
- Observation of the client in a natural setting — for example, at preschool or school (or for a very young child, asking the parents to take some video footage at home to feed back to you)
- In-clinic observation (the ADOS-2 is the best tool we have to guide that process in a standardised way)
- Developmental history taking and taking a detailed interview with parents or primary care giver(s)
- Consideration regarding differential diagnosis
- Liaison with a paediatrician to look at the child's overall development and any related medical considerations to rule in or out
Dr Chalfant says that the literature suggests that if there is well-rounded approach to assessment in place, which includes the aforementioned points, such as natural observation, conducting interviews with parents (for younger clients), and the appropriate, targeted use of tools, then it makes for effective assessment outcomes, regardless of the various nuances that are a part of the varying clinical demographics.
“The release of the toolkit is a very immediate next step in terms of where we’re heading. Some of the questions that seem to be increasingly raised are about assessment for particular groups and the applicability (or otherwise) of the core diagnostic criteria to those certain groups – so, for example, some of the issues are around girls versus boys with assessment and how well or not assessments pick up on ASD in girls.
“When you have a comprehensive approach to assessment, such as one that includes natural observation, conducting interviews with parents, direct observation of the client or the use of standardised assessment tools, then that process does just as good a job for girls, as it does for boys — the most recent scientific literature supports that notion. And that, too, will remain a focus for us moving forward.”
Autism isn’t a condition that needs ‘treatment’
Understanding your client’s strengths and weaknesses, and then providing tools for them to understand what to do with that information is key to providing a roadmap to live a meaningful, fulfilling life, says Kathleen Davey, clinical psychologist and founder of Decipher Zone.
Ms Davey notes that it’s not an individual’s autism that needs treatment, but instead ‘treatment’ from a psychologist is for symptoms or co-occurring conditions such as anxiety, otherwise the intervention support given is often skill development in areas such as recognising social-emotional cues, independent living skills, or navigating friendships. Assisting a client to understand and accept their own autistic profile or empowering their support network of parents, friends, colleagues to understand and embrace their autistic profile is one of the most powerful roles we can play.
“I don't look at it as treatment in the traditional sense of the word, autism isn't a thing that needs to be treated or fixed. Autistic individuals or their families can greatly benefit from tools and strategies to support areas of weakness and a process of understanding and accepting neurodiversity in our community. If you look at the autistic community or adult self-advocacy groups, you will see a celebration of autism, a strong sense of autistic identity, and pushback against things called interventions and treatments.
“I would separate the word autism from the specific goals or behavioural challenges that help is being sought for. Usually, the areas that people are focused on are around trying to develop social skills, emotional regulation skills, or sensory management or even flexibility in thinking to achieve certain goals. There are differences between somebody who requires 24-hour care and somebody who can live independently, strangely their autistic profile may be similar, however the former may have a co-occurring intellectual disability, speech and language disorder and trauma/anxiety condition that leads to the level of care needed.
“Yes, there’s management of that person required, and significant support needs, but it's not necessarily their autism that requires intervention, it may be that the sensory environment needs to be changed, they may need to learn new self-help skills, their co-occurring intellectual disability may need to be recognised, or their support network needs to understand how the person thinks.”
Ms Davey says that clinicians need to choose their words wisely when communicating with parents and individuals around autism, and make a shift towards more delicate, understanding-based language, which she says lends itself to improved clinical outcomes. “I would love to see psychologists be very careful with the language used in their reports and in their communication with parents and the individual themselves around autism. Having more strength and understanding-based messaging has a big impact on people moving forward.”
Autism education is critical, and should be led by clinicians
Regarding adults, there is a long list of situations where people have had autism brought to them or have self-identified as having autism, and their diagnosis is a relief, says Ms Davey. Additionally, she says that autism education helps individuals understand their strengths and weaknesses, and it sets the wheels in motion for an effective exploration (and understanding) of their diagnosis.
“There are many examples where people have learned about autism and have subsequently self-identified as being autistic, or a clinician has identified their autism and they’re response is ‘That explains so much, I wish I had have known this when I was younger’. For some people, there might have been a pre-existing negative association or misunderstanding of what autism is and being diagnosed can be a negative experience, but for a lot of people, and when handled well by the clinician, it allows them to understand themselves properly for the first time...I know many people embrace it and use it to understand themselves like they never have before.”
As for children, the way which the autism education is conveyed is critical, and it’s the clinician’s role to lead the way to ensure it resonates with the individual in a way that is empowering and not devastating. If parents don’t understand autism it can make it difficult to be responsive and attune to their child’s needs.
“It’s critical how you go about presenting the information. For example, if you’re talking to a child’s parent and talking from a deficit model, where the child is in room but you're talking directly to their parents and they're hearing you speak about them in the third person, this can have a really negative impact on the child's understanding of the autism spectrum and themselves.
“If parents don’t understand autism, they might think their child is getting upset about something completely different or not realise that they need something to be explained, for example, why their friend is upset with them and advice on how they can repair that relationship. So, if parents don’t know about autism, they may not realise their child is not picking up friendship cues naturally. As assessing and treating psychologists, our language can impact on a parent's response to an autism diagnosis and their sense of empowerment and vision for their child’s future.”