Measuring ‘Quality of Life’ For ASD: shifting from diagnosis to happiness

I attended Autism Europe Conference in Nice, France in September, 2019. This conference happens once every 3 years and highlights a variety of research presentations on many different topics about autism. There was one keynote speaker who really intrigued me from Sweden’s Karolinska Institutet – Sven Bölte. His keynote presentation, From diagnosis to functioning and quality of life in autism, talked about how autism is discussed in terms of clinical symptoms but for autistic individuals, their families and large parts of society, the dimensions of functioning and quality of life are both more significant and accessible. In Sven’s lecture, a review was given on quality of life and functioning in autism, and why shifting attention from diagnosis to these dimensions is both meaningful and necessary.

There is a need to develop supports and plans around quality of life and happiness rather than around the diagnostic symptoms of autism.

When parents are asked what the most important goal for their child is, they most often say happiness – they want their child to be happy. Every parent wants that for their child, diagnosis or not. How do we design services or assess quality of life for someone on the spectrum? How do we provide an environment that fosters happiness?

The World Health Organization developed the Quality of Life tool, WHOQOL-BREF. This tool is important because it has the potential to ensure that outcomes of services aimed at adults on the autism spectrum are measured effectively. There needs to be accountability and a way to assess services otherwise, how do we know what to improve on or where to make changes?

In 2016, Bölte wrote in an article that neither the “International Statistical Classification of Diseases” nor the “Diagnostic and Statistical Manual of Mental Disorders” sufficiently account for either an individual’s ability to function in his daily life, or the quality of his life. Yet functioning and daily experience are frequently the starting points for clinical assessments. His argument is these manuals don’t precisely define or quantify abilities and disabilities in specific contexts, such as the workplace or among peers at school.

This is why people fall through the cracks because without assessment in specific contexts, you may not see the complexity or scope of problems.

For example, my daughter was highly anxious in the school environment and not able to function well. Her anxiety impaired her cognitive functioning even further. However, at her job working with cats, she exhibits no symptoms of anxiety and functions quite independently in that environment. Abilities and disabilities must be assessed across environments or the supports will not be sufficient or completely denied.

In 2001, the World Health Organization published a guide that could serve as a platform for a comprehensive, standardized clinical assessment of functioning. This International Classification of Functioning, Disability and Health (ICF) documents all the possible categories — 1,600 in all — of an individual’s mental and physical functioning. However, this encyclopedic tome is too broad to be practical for clinical use. Core sets were designed from the ICF to be more specific to abilities and disabilities associated with each condition.

Ensuring A Quality of Life Measure

There was a study done by Professor Helen McConachie about Ensuring a Quality of Life Measure (QoL) for adults on the autism spectrum is appropriate and valid. I encourage you to read the outcome of the study which is highlighted here in layman’s terms.

In summary, Dr. McConachie found the following:

Quality of Life for autistic people:

• Is lower than the general population.
• Is lower for people with a mental health condition, females, and those reporting higher autism characteristics.
• Is higher for those who are employed, receiving support (i.e. at home or work) and those in a relationship.

The WHOQoL-BREF:

• Is an acceptable measure of Quality of Life for autistic people.
• Each domain measures what it claims to measure. For example, the Social domain is related to questionnaires about social support.
• Lower quality of life is related to higher depression/anxiety. This means the questionnaire might be used alongside interventions to assess improvement.

The WHOQoL-Disabilities module and ASQoL questions:

• The Disabilities module is OK for use with autistic people, but some of the questions may be interpreted differently
• The ASQoL questions measure friendship, social support, barriers and autistic identity.
• The ASQoL questions correlate with each WHOQOL-BREF domain. This means the ASQoL questions do measure QoL.

Using a Quality of Life assessment tool can help those in a supportive role see where the barriers are to happiness/well-being and design services that help an individual with ASD thrive. Parents will not always be there to advocate and help once their children are adults. It is up to the larger community to be accountable and go beyond a diagnostic assessment which is just meant to interpret a group of symptoms that occur together.

Further Reading:

Living Well on the Spectrum

A Practical Guide to Happiness in Children and Teens on the Autism Spectrum