Research: Well Being and Quality of Life on the Spectrum
We know that both nature and nurture have an impact on the way people grow. The social environment – parents, school, friends, community opportunities – has a big impact on the quality of a person’s life, and people with autism are no exception. This is a hopeful thing. Social environments can be changed.
An article published this month in Pediatrics explores current research on the idea that effective social support and recognizing autistic traits as simply traits can have the biggest effect on quality of life for people with autism, regardless of how severe their disability may be. It all comes down to strong relationships and community.
You can find the link to the article here. It’s worth your time to read the whole thing, but here are some highlights:
Parents who are actively responsive, rather than directive, promote positive social engagement and language development. What does this look like?
- following children’s focus of attention
- labeling and commenting on the child’s objects of interest
- matching the child’s pace
- allowing the child to take the lead
- encouraging the child to initiate interactions
This applies to typically developing children, and there is evidence that this kind of caregiving may especially benefit children with autism, especially for those who have trouble responding to others.
There is also evidence to support the benefits of parents’ acceptance of their child’s autism. Positive emotions go with secure attachment, which leads to better communication development and mental health for both parent and child.
Across the grades, classroom inclusion is good for children with diverse intellectual and academic needs.
Inclusive early intervention predicts higher IQ in elementary school. Higher levels of academic inclusion relate to better functioning for autistic adults and adults. Autistic adolescents with intellectual disability have better academically in inclusive versus segregated classrooms – likely because instruction is more structured and focused on skill development, expectations are higher, teaching methods are more naturalistic and less focused on behavior management, and because they have the opportunity to learn from and with their neurotypical peers.
It isn’t the severity of autism symptoms that pose the biggest barrier to inclusion. It’s the attitudes of other students. Unfortunately, students with less severe autism may more frequently suffer from bullying, perhaps because peers assume that unusual behavior is a matter of choice rather than disability.
Growing into Life as an Adult
Appropriate support, rather than severity of disability, is critical for building a good life.
In the United States (and Canada), supports for autistic young adults with good conversational skills are often not available. Unfortunately, there is a pattern of people in this category experiencing difficulty adapting and finding employment.
However, the organizational and social experience of going to work can improve self-regulation, interpersonal relationships, adaptive daily living, and behavior. Success leads to success.
Well-Being and Social Acceptance
A high need for support does not prevent a high quality of life. The research actually turn the idea of high and low functioning upside down; those with subtler symptoms, more social awareness, better communication and higher cognitive abilities tend to see their autism as more severe, and experience more anxiety and depression.
This might not just be about self-awareness, but also avoidance of bullying. Adults with autism reported their quality of life was related to the quality of social support, rather than autistic traits. Trying to hide one’s autistic traits to fit in comes at a cost.
“The literature reveals the importance of autistic individuals’ unique perspectives on their own lives and the need for research on how to help them from an early age to holistically understand their strengths, differences, and needs in an affirmative way that empowers them to constructively face their challenges.”
Towards Social Acceptance and Self-Advocacy
There is much evidence to support the idea that successful functioning in life is less connected to symptoms but very connected to social inclusion and the acceptance of autism as a way of being. The autism spectrum is not a straight line, and functioning labels are not helpful.
What is helpful is social support. In the earlier stages of life, children benefit from enriched social environments, such as parent input for language and intellectual growth and inclusive schools that teach all students to welcome friends with diverse ways of being in the world.
Widespread autism acceptance will help to provide enriched experiences and opportunities across the lifespan. The neurodiversity movement is a partner in this change of perspective, opening our eyes to the value of being autistic, and working towards supports instead of cures.
Future research should consider how autistic traits may sometimes improve functioning and well-being. People who live with autism can best explain the difference between “normalization” and quality of life, such as how stims can help them self-regulate, and intense interests can lead to success in education and employment. People with autism also have a lot to say about priorities in research, like making sure everyone has the opportunity for functional communication, and the need for services into adulthood.
Priorities for Parents
Based on this article, what should parents be thinking about?
- Make relationships a priority. Do what you can to strengthen family and community relationships for your child. Accept help when it’s offered!
- Learn about communication and parenting from relationship-centred therapies.
- Choose schools that offer enriching, inclusive experiences – even if your child is more severely affected. Look for ways to give your child diverse, interesting experiences, starting with things that interest your child, in your community.
- As your child gets older, learn about person-centred planning and take advantage of the services in your community that work from this philosophy.
Kapp, S. (2018). Social support, well-being, and quality of life among individuals on the autism spectrum. Pediatrics, 141, 362-368.
- Parents and Conversation: Telling Tales: Supporting Personal Narrative in Children with Autism
- Exploring Interests: Go Fly A Kite: Exploring Your Family Culture
- Inclusive Education: Inclusive Education Resources
- Person Centred Planning: Building a Good Life