People often ask “How do you cope with autism?” Having been down this journey for a dozen years with my 14-year-old son with autism I’d hope to “know the answer” as if it was that straightforward, but I know rather that the right balance and type of guidance and comfort that helps each family cope is as individualized as each family and as individualized as each child with autism. As parents, we all have our unique coping needs and mechanisms, which evolve for us during our journey as parents, as our children and also our circumstances evolve and change. We face our own personal challenges as well as shoulder those of our family members. We all have our particular strengths, vulnerabilities and dependences. Yet, our families are all united in a very unique way because of our journey, just as our children are all united in some way because of their autism, diverse though they are as individuals. We are connected to other families by our quest to help our children, the common barriers we face, the challenge to make the best possible choices regarding treatments, and in the familiarity of each other’s lives.
Find the Worthiness Within Ourselves
“Your child will teach you things about yourself that you never knew.” Words of wisdom spoken by a gifted behavior analyst. As parents, we are called upon to nurture, to love, to advocate for, and to empower our children in ways we had not necessarily envisioned when we chose to become parents. We can find the way. Our children lead us there through their triumphs, trials and tribulations. We seek parenting guidance in literature and workshops, we take those extra steps needed to teach and enable our children, we hold our heads high during those challenging public moments, we advocate and collaborate to provide our children’s education and we encourage others to interact with and help our children. Our role is multi-faceted, as all the things we do have significant implications for our children with autism, yet taken together we can find the wholeness in our role as parents.
What can help along the way? Self-strength can be gained through a variety of sources, such as through: attending autism workshops and reading reliable autism literature, consulting with autism experts (BCBAs) for our children, and participating in support groups. Personal self-improvement avenues might prove beneficial, such as counseling, stress-management techniques such as relaxation, meditation, or quiet walks outdoors, and exercise programs. Many parents also garner strength from their religious communities.
Part of worthiness comes from forgiving ourselves for missteps along the way, as well as realizing that small setbacks, albeit frustrating, do not detract from the bigger picture of helping our children be the best they can be and avail themselves of the array of life’s experiences.
See That Which is Special in our Children
We need to cherish our children’s individual accomplishments, realizing how much harder it is for them to achieve as compared to others. We must appreciate them for this, and value their personality and character and those idiosyncrasies that make them unique. Together parent and child walk through the journey of life, hand in hand, finding and appreciating each other and helping each other along the way. Our children may not think and act as others do, but they do learn and grow. We should embrace the persons they are, respect how they think, how they learn and what motivates them to do so. We can’t simply take away their autism, but we can add in to our parenting some specific tactics that take into account their being, their thinking, their ways, and their needs. Let’s nurture our children and in a manner that they can understand. Let’s teach them how to interact with the people and places in our society to their greatest potential.
Appreciate the Goodness in Others
People touch our children’s lives and our lives in remarkable ways, ways that may not be as obvious to parents without special needs children. Appreciating the goodness in those people who purposefully or innocently have a positive role or impact in our children’s lives is one of the blessings in parenting children with autism.
We are blessed if we can derive support from any of these sources:
Family and friends can provide considerable support to both our children and to ourselves. Their love and their availability, whether in person or remotely, their unconditional support, their familiarity with us and our families surrounds us and protect us. They want to be included and they want to ease some of our hardship. They empathize, they understand our pain and our needs, they accept us, and they share in our joys. They can provide real comfort in our world because they make us whole and enable us to feel worthy.
Professionals who educate our children play a crucial role in their development, more so than for typically-developing children. Our children with autism need knowing adults to lead their way as they may not be able to dictate the direction and achievement of their lives. We must place our precious children in the hands of their teachers and professionals, and by parents and professionals collaborating toward common goals held for our children, we work together to find the whole-life teachable moments our children need.
There are many experts whose dedication to the field of autism has raised awareness and improved treatment and education for our children. Their expertise has furthered understanding of autism in the recent decade and continues to do so. Some experts have paved the way, and others are just beginning their career and will continue developing the field, continue to benefit our own children throughout their lives. These experts research, they lecture, they write literature, they publish their studies, they work for non-profits, and they volunteer their time on committees and organizations. These are our heroes, those whose life-work has improved our children’s and our families’ lives.
Sometimes what can be the most touching is seeing strangers interact with our children; strangers who see evidence of the individual’s challenges, and then reach out and interact in a way that facilitates or perhaps just demonstrates their respect. It might be the teenage clerk at McDonalds patiently, perhaps timidly asking questions of an individual with autism who is attempting to order food, or perhaps it’s the shopper at Barnes and Noble smiling appreciably at an individual with autism reading a Disney story aloud to nobody in particular. Seeing strangers appreciate our loved ones with autism, helping them, charmed by them, accepting them, and interacting with them shows us a sample of pure and sweet goodness in people.
Finally, and perhaps most significantly, it’s the other parents of special needs children who touch us. We see another special parent, and we connect. We understand. A young daughter of a stranger demonstrates behavioral difficulties at a parent-and-child gymnastics class, and we tell the struggling mom that things do get easier. That’s enough said, that struggling mom feels connected, saying “thank you for your comforting words” at the next gymnastics class. Or we know a mom whose physically handicapped son had recent surgery and we remember to send a note asking how he’s recovering and how she’s managing. Regardless of whether the challenge is autism or another disability or illness, raising a child with special needs is a very challenging role. We may not all share the same hardships and joys, but we all share the same goal of providing the best quality of life for our children, and wishing for the optimal outcome. We all share the burden of personal hardships. We share comfort and pain even when no words are spoken. We know, we love, we cope, we parent.
This is what our children with autism enable in us, the chance to see what people are capable of. It’s in looking for the goodness in ourselves, in our children, and in all people, it’s through appreciating the efforts that we all make, that we find our own strength. That’s how we come to cope.
Where can you learn more about effectively parenting children with autism? Science-based treatment such as applied behavior analysis (ABA) can help you teach your child most effectively and shape his behaviors. There are a variety of websites one can visit for more information:
- The Parent-Professional Partnership Special Interest Group of the Association of Behavior Analysts International (ABAI), at pppsig.org/
- The Autism Special Interest Group of the Association of ABAI, at dddc.rutgers.edu/autismsig/
- ASAT Association for Science in Autism Treatment, at asatonline.org
BACB Behavior Analysts Certification Board (find BCBAs in your local area at www.bacb.com)