This post appeared orginally on the Autism Speaks Blog.
I became a typical father in 1979. It was a dream come true—those magical first smiles, first steps, first words. Then in 1981, my son stopped talking, stopped playing normally, and began flapping his arms. From those first red flags of autism until now, I have not stopped experiencing autism and the family—the central theme of my life and work—counseling, teaching, and writing about the impact of autism on families.
The behavioral challenges of autism are often so consuming that it can be next to impossible to keep the needs of your family in perspective. From the outside, it may look like the child is the boss or king of the family. Parents often live holding their breath until the next problem or meltdown. The whole family can be immobilized by the unrelenting stress.
No small wonder that the interventions focus primarily on reducing problem behaviors and promoting learning and development. This necessary, but narrow focus on trying to eliminate troubling symptoms can feel like drowning in quicksand. While in the big picture, your emotional life, your marriage, and your other children are on hold indefinitely. Here are some lessons I have been learning and teaching regarding the big picture:
Give yourself permission to open up to your thoughts and feelings, which fall along the parents’ spectrum of fear, guilt, depression, anger, and anxiety over the lost dream. Take a few slow breaths and notice your reactions. Some take the diagnosis in stride, but more commonly it’s an emotional bomb, and it takes time to regain your footing and go on to an uncertain future. Like the weather, your unpleasant feelings will pass, and open the door to hope and celebration in every little step of developmental progress.
Spend some time each day joining your child on the floor having fun, following your child’s lead, and building connection. Your child with autism is still a child and needs more than therapy in her day. Parents cannot control the outcome for any child, but we can restore a full and rewarding relationship with a child growing up with autism.
Try to spend at least a little time each day with your other children or attending even minimally to their unique needs. Typically developing brothers and sisters feel rejection when their sibling doesn’t engage with them, sadness over not having a playmate at times, and sometimes embarrassment outside the home. There are special lessons to be learned from each child.
Work to understand the different perspective of your partner. Mothers are consumed by the day-to-day needs of raising a different kind of child. It’s hard to take a break from needs that do not diminish. Fathers have a difficult time talking about their feelings especially when unable to fix the problem. While reports of an 80% divorce rate are unfounded, evidence does support increased stress, anxiety, and depression in men and women.
Take care of yourself and your relationship. Appreciate what your partner is doing right. Make time for each other. You need each other more than ever. All children need active, positive, energetic parents. In a very real sense, children cannot thrive if their parents are drowning. It might be impossible to have “date nights,” but it is conceivable to do little things for each other and together, thus nurturing your relationship.
This is the big picture of what I believe it takes to survive and thrive with autism in the family. Trying to focus too much on behavior and trying to change someone with autism can block a family’s happiness. This may seem impossible with your child’s behavioral issues, but doing as much as possible to nurture your entire family can make the impact a little easier for all. This does not mean denying real problems. It just means paying attention and cultivating the moments we might overlook or ignore, when problems are absent, such as our children running to us when we get home, or our partner glad to see us after a long day at work or home or both. This is a lifelong search for meaning and connection, while becoming our best selves as family.
Speaking from my own experience, I thought I would change my son, but after years of relentless effort I realized that he changed me. He never spoke again, but this is how his autism has spoken to me day by day.
