The Hope of Happiness for Those with ASD
By Jenny Palmiotto
Chou Chou Scantlin is infectiously happy! She’s insanely creative. She amazingly open and friendly. She exudes confidence. She is ever positive and satisfied with her life. She’s the type of person that we want our children to grow to be. Actually, she the type of woman that I hope to be someday too. She is a singer, actress, costumer and producer of Doc Scantlin and his Imperial Palms Orchestra. And…she is proudly autistic.
AUTISTIC & HAPPY
Chou Chou is admirable in her positive disposition. In fact, she recently referred to herself as a “campy glamourpus” who doesn’t worry about age. At 62, she is an inspiration for her comfort in her own skin. She just seems so darn happy. So, how can we all be as happy as Chou Chou? Well, first a bit of background information might help. Her life story is even more intriguing than her heartfelt and richly entertaining performance style.
Chou Chou and her husband Doc Scantlin choose happiness over conformity. She chooses to embrace her diagnostic label and not let the medical model define or limit her. She is not afraid of going after her dreams, even when they seem impossible. Her dream is to share her message of positivity with the world. She’s created a one-woman cabaret show tilted “Blissfully Being: Life as an Atypical Valentine” where she will allow us in to her journey as an autistic woman. She will share her core message of power and importance of each of us adding our voices, autistic and not, with love.
Chou Chou’s story as an autistic self-advocate living a full life of loves alongside a man she treasures, is refreshing and inspiring. She is defying the limited roles our society places on persons on the spectrum.
We want our loved ones with autism to create fulfilling lives and we have a lot to learn from Chou Chou. But sometimes, when we hear such stories, we begin to doubt ourselves and send negative messages. A nagging voice might say, “You aren’t doing enough” or “This will never be my child because….” or “If I’d just done…” Stories like Chou Chou might awaken the worry, the fears of failure, the uncertainty that the future holds.
If Chou Chou Scantlin had an opportunity to see you in this moment, she would share her love and positivity with you. She wouldn’t condemn or shame you. She would empower you to love your journey, love yourself, and follow your dreams. She certainly has…and she credits her mother with being a guiding force, always believing in her and helping her to feel “good enough.” Having had the privileged to engage autistic self-advocates like Chou Chou, there are a few things I have come to realize; important concepts that are important to how we look at autism treatment.
HAPPINESS IS CREATED
Happiness researcher, Sonja Lyubomirsky, defines happiness as “the experience of joy, contentment, or positive well-being, combined with a sense that one’s life is good, meaningful, and worthwhile.”
For parents of children with autism, there may be worries or fears that this experience of quality of life cannot be attained. But, many self-advocates including Chou Chou Scantlin prove that a diagnosis alone does not preclude one from living a joyful and authentic life.
Persons with autism deserve to live happy lives
Researchers Helles and colleagues (2016) delved into the quality of life for autistic males with high intelligent quotients. Although social and employment concerns were noted, many participants were content with their lives. In an interview, Helles concludes “I think it is an important distinction that even though someone has severe difficulties with functioning in everyday life, they can still be happy.” This may correlate with Lyubomirsky’s suggestion that much of happiness is within our power.
Certainly there are a lot of tragic things that occur within the autism community, none of which is related to actually being on the spectrum. There are plenty of systems issues that need to be restructured to create safe schools, effective law enforcement, and availability to support. These are crucial to prevent tragic outcomes like sixteen-year-old Kennedy LeRoy’s suicide due to relentless bullying or unarmed Charles Kinsey being shot by police while protecting Arnaldo Eliud Rios Soto, a young man with autism who had wandered from his group home.
We still live in a world where children with special needs are physically assaulted by those responsible for their care, such as the case for a nine-year-old student of Tobinworld II who was beaten by Kamaljot Kaur. Regretfully, even celebrity Tony Braxton who recently announced that her autistic son is now “off the spectrum” considered autism as God’s punishment to her.
Hate like this certainly must make it difficult for persons with autism to find happiness. In fact, many parents might be worried about simply keeping their child safe from a dehumanizing and dangerous world, where living a happy life comes second to managing these systems.
But, put simply, persons with autism deserve to live happy lives.
Happiness is Contagious
Happiness must be a goal within treatment and within our global discussions about autism. The wonderful thing about happiness is that it is contagious, a research finding of Christakis and Fowler of UCSD. Happiness is a collective phenomenon, where “people’s happiness depends on the happiness of others with whom they are connected.”
When you think about it, the idea that happiness is contagious is at the core of Relationship Development Intervention (RDI™), a treatment model that uses the experiences between two people to find the joy, contentment, and positive well-being so that our children will know that their life is meaningful and worthwhile.
Within the RDI™ community, we know that happiness is created in small moments between two people in what we call guiding engagement. As happiness researcher Vaillant explains “Joy is all about our connection to others.” Within our guiding engagement, we may have more specific focuses, but the overall outcome is enjoying life and living from a place of purpose.
An RDI™ Guide to Happiness
In The How of Happiness, Lyubomirsky notes six practices that create happiness. In his guide to happiness, it is easy to see how RDI™ is absolutely a road towards greater happiness.
1) Investing in Relationships
Within the RDI™ model, the power and potential of the human relationship is at the forefront. In fact, this is one of the theoretical underpinnings that makes this model unique. RDI™ positions the parent-child relationship as a necessary and critical relationship. Parents who use RDI™ develop their ability to create moments where their child learns to invest in relationships too.
2) Managing Stress & Hardships
Our first goal within the RDI™ program is to support each parent in reducing the external and internal parts of parenting that are problematic. Many parents find that they are exhausted or depleted from all their children’s appointments. Parents might have temporarily lost their trust in humanity after so many tangles with their school district or they might simply feel isolated and alone, taking little time for self-care. Although these are very normal experiences, learning newer ways to manage stressors is always important. An RDI™ clinician doesn’t focus on canned clinical advice like “go get a massage” or “don’t worry so much”, but helps parents uncover and discover ways to respond to their own stressors and to physically and emotionally nurture their whole family.
Related: Authenticity in Autism Treatment
3) Committing to Your Goals
In the RDI™ program, we help parents confirm their values and recognize their real goals that they have for their children. In early stages of treatment, parents are encouraged to discover what their biggest dreams are for their children. They are asked to drop the clinical language that they have learned such as “improve social skills” and “decrease maladaptive communication” but rather to speak from their hearts. When parents are given space to do this, it’s amazingly simple and predictable; parents want their children to find happiness, feel like they belong, and live purposefully. In creating a vision for the future, parents commit to their goals.
4) Practicing Gratitude & Positive Thinking
It’s so easy to lose sight of the positive things that are occurring in our lives. We can all get bogged down by the negative. We might even be hardwired to store our negative episodic memories at a higher weighted value. That is why learning to practice gratitude and positive thinking is just as important as daily exercise.
In RDI™, this concept comes into play in numerous ways. While interacting with our children, parents learn to spotlight their positive episodic memories with their children, making the moment more salient. Additionally, parents are given an opportunity to self-reflect after they’ve engaged with their child. This self-reflection is guided by the RDI™ consultant and often focuses on what went well within the interaction. Finally, this concept of showing gratitude for one another is firmly part of our work within intersubjectivity, where parents are supported to express their feelings and share their positive experiences with their child. As Lyubomirsky suggests, the more positive we put into the world, the more positive our thinking becomes…and happiness grows.
5) Living in the Present
What we know about life is that all of us contend with millions of distractions. Dr. Gutstein is the autism community’s expert in living in the present. The whole model of RDI™ is about learning to be mindful guides to our children. As parents learns to mindfully guide their children, they learn to shift their thinking and learn how to attend to those distracting thoughts. Parents learn the art of slowing down. They are invited to be fully emotionally present in planned daily activities. When we are able to live in the present with our children, it’s almost impossible for our children to not feel safe, understood and loved.
6) Taking Care of Body & Soul
Dr. Gutstein describes a concept called agency where children learn to “intentionally inﬂuence one’s functioning and life circumstances.” As families move through the RDI™ program, the focus grows to include helping children learn to take care of their own bodies and souls. This is a gradual process known as self-guiding where self-reflection, self-organizing, and self-motivation are focused on.
If you are like me, you want a little more happiness in your everyday life. Her are a few ideas:
· Keep practicing happiness.
· Use RDI™ as a way to enrich your family’s happiness goals.
· Find people that spread happiness.
· Meet people like Chou Chou Scantlin and others that are saying that its perfectly reasonable to be on the autism spectrum and live a life filled with happiness.
Join us at Love & Autism: A Conference with Heart where happiness is created. Learn more at www.loveandautism.com
Happiness is contagious, how will you spread happiness today?