The traditional approach to autism treatment and support is predominantly concerned with focusing on a person’s challenges, rather than building upon their strengths. Programs and services focus mainly upon eliminating or reducing socially inappropriate behavior, rather than developing practices concentrating on promoting the person’s self-esteem and feelings of happiness. It is therefore not surprising that so many autistic individuals suffer from depression, and considerably more experience extreme anxiety and poor self-worth.
Promoting and Measuring Happiness in Autism
When researching for this article, I was struck by how little attention has been paid to the emotional well-being as a desired outcome for autistic individuals in the field of psychology.
Traditionally, the effectiveness of psychological support and treatments have concentrated on improving cognitive functioning, skills, and behaviors, especially social skills. However, does an increase in IQ equate to a happier outcome? Does improved cognitive functioning, education, and adaptive functioning mean the individual is happy?
Using these analogies, a good outcome means living independently, being employed or in higher education and having friends. Whereas a very poor outcome would be having no friends, no independence, and needing high levels of care and support in a home or supported living accommodation. But does high levels of independence necessarily lead to a better quality of life and “happiness?”
Autism and Quality of Life
Most research on autism and quality of life tend to focus on the negative impact of autism on quality of life.
A report in 2001 entitled “Ignored or Ineligible? The Reality for Adults with Autism Spectrum Disorders” by Barnard et. al for the National Autistic Society surveyed 450 autistic adults through all levels of the autistic spectrum and concluded:
- Only 3% lived fully independently
- Nearly 49% lived at home
- Only 10% could manage daily living tasks without assistance
- Only 2% of low functioning autistics were in full-time paid employment
- Only 12% of high functioning autistics were in full-time employment
- 31% of all adults studied had no social involvement outside the family
- 32% suffered poor mental health
A later study in 2002 by Selzer and Krause of 405 autistic individuals (62% of whom were adolescents) entitled “A Profile of Adolescents and Adults with Autism Spectrum Disorders” had similar findings:
- Of the total sample, only 22% socialized with family members
- And only 14% socialized with someone from school
- 98% of adolescents had difficulty making friends
- 95% of adults also had difficulty making friends
- Over 30% of adolescents had a co-morbid mental health disorder
A further study by Bauminger and Kasari in 2000 entitled “Loneliness and Friendship in High Functioning Children with Autism” found that it wasn’t the number of friends but the quality of friendships that are predictive of satisfaction or loneliness for autistic children. Despite the common belief that autistic children prefer to be alone, the lack of intimacy, reciprocity, and emotional enrichment led to more intense and frequent loneliness compared to their non-autistic peers. Even where there was a structural social network at school, the lack of invitations to birthday parties, sleepovers, or games can have a profound impact upon quality of life.
Future employability may be a better predictor of quality of life than academic achievement. Even though some autistic adults complete secondary education or even university degrees, they rarely had contentment in terms of job satisfaction, independent living, self-determination and social support. Indeed, although many autistic children successfully complete mainstream education, long-term employment remains low, even if they have the traits that employers find desirable (trustworthiness, punctuality, honesty, attention to detail).
Social situations and environments can be extremely debilitating for autistic people, and traditional methods of supporting individuals have been focused on preventing or treating stress and mental health problems, rather than striving for wellbeing and asking autistics, “What makes you happy?” In other words, we should try to promote happiness by helping to develop strategies that foster and increase positive feelings.
How Do We Measure Happiness in Autism?
When parents are asked what the most important goal for their child is, the most common answer is “happiness.” Diagnosed as autistic or not, every parent wants their child to be happy. The challenge for professionals in the autism field is: How do we measure happiness in autism? And how do we provide an environment that fosters happiness?
Happiness is a subjective concept and is usually assessed through self-reporting, using a tool such as “The Oxford Happiness Questionnaire” (Hills and Argyle 2002). However, self-reporting of feelings can be very difficult in autism. Firstly, self-reports are useless for non-verbal autistics, or those with a significant intellectual disability where the reliance is on observations by parents and caregivers. However, even amongst verbal autistics, self-reports are still problematic. Even high functioning autistics may struggle to describe their own thoughts and feelings; and the terminology uses vague, abstract or ambiguous words. Even the concept of happiness itself can be very confusing.
When an autistic man is asked the question “are you happy?” how does he answer? For example:
- If you are having a bad day, does that mean you’re an unhappy person?
- If you enjoy a certain activity, are you happy?
- How many positive events do you need to make a day a happy day?
- How many happy days do you need to be happy with your life?
Although autistics may find it difficult to recognize and differentiate their own feelings, in general they can differentiate between a good/positive feeling and a bad/negative feeling.
Undoubtedly, we could all benefit by having happier lives. For some autistic adults, happiness has been considered secondary to behavior management, leading to a lower quality of life and feeling of self-worth. For professionals in the field of autism, there must be a focus on the principles of positive psychology while concentrating less on the negative aspects of autism awareness.
Meaningful change is hard, slow to come, and is often achieved in the face of adversity, taking many small steps over a long period of change.
If I can offer any advice to someone who cares for an autistic person, it would be to identify and allow them to engage in activities or interests that are meaningful to them. For some, it will be talking about their special interests to someone who will actually listen, or just listening quietly to music through headphones. And remember, what makes one person happy may be unique to them. Sometimes a quiet contented mind can be the happiest feeling of all.
David Paul Crisp is an autistic adult with 13 years’ experience working in health and social care; and a lifetime of caring for family members. He is married with two adult children, both of whom have autistic spectrum disorders. David is an international speaker, trainer, advocate, and published writer. He is also an approved trainer with Neurodiversity Training International, and co-deliverer of The Oliver McGowan Mandatory Training in Learning Disability and Autism to health and social care professionals with the National Autistic Society.
David has attained an NVQ Level 4 in Health and Social Care with Distinction, a Level 3 Award in Education and Training, an Advanced Diploma in Autism Awareness, TRIAD 5 Autism Needs Assessor Certification, and has completed over 100 courses.
For more information, you can email David at email@example.com or visit his website www.wired4autism.co.uk.
Barnard, J., Harvey, V., Potter, D., & Prior, A. (2001). Ignored or ineligible? The reality for adults with autism spectrum disorders
Bauminger, N., & Kasari, C., Loneliness and friendship in high functioning children with autism
Hills, P. & Argyle, M. (2002). The Oxford Happiness Questionnaire
Selzer, M. & Krauss, M. (2002). A profile of adolescents and adults with autism spectrum disorders
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