Lessons from a Father of a Son with Autism
Every individual on the autism spectrum has strengths as well as challenges. Awareness is just the beginning for children and adults with autism and the families who love them. With awareness come responsibilities and possibilities—for families, schools, communities, and whole societies. People living with autism have been calling for autism acceptance, rather than ‘just’ awareness, to be the theme with appreciation for the value of everyone’s differences and gifts.
I swore I would never accept my son’s autism, so I understand wanting broader awareness and the hope for a cure. I thought I would never smile or laugh again, if my boy didn’t start speaking again. I believed that the best medical care I could find along with love and my own hard work would cure him. My son is an adult now and there are still moments when I wonder who my son might have been, and who might I have been as well.
Love makes giving up unthinkable, but how does acceptance apply to autism? The term seems to imply that a completion has occurred, but the grieving and coping with traumatic stress experienced by parents is more complex. The years have taught me that life is not about making war or peace with autism. Neither seems sustainable. Positive and negative feelings come and go, and any peaceful moment can be shattered by a meltdown or behavioral challenge. I have learned that acceptance is about opening up and being in the present moment.
Trying to cure autism or even eliminate its most troubling symptoms can feel like drowning in quicksand. Accepting a child with autism involves working to change what can be changed, celebrating each step of progress, and embracing the child in the here and now. It is a delicate balance which is constantly evolving and requires dedicated parenting with good supports and services.
Beyond the evolution from awareness to acceptance and appreciation, the autism community needs action. Parents of teens and adult children with autism have generally worked hard and come a long way with love and courage. What they need more than anything is the peace of mind that their vulnerable adult children will be adequately cared for when they can no longer do so themselves. This is a public health challenge and a moral duty for society.
For parents of children with ASD and other special needs, there is a cliff at age 21 when services are no longer guaranteed except for those diagnosed with intellectual disability. From the moment of diagnosis onward, parents understandably worry about adulthood for their children.
For a humane society as a whole, it is essential that we use our strength in numbers to secure a meaningful future for families who have members with autism. While the social and emotional development of young people with ASD may be delayed, there is strong scientific evidence that it continues in adulthood.
We must not forget that racism and poverty compound the challenges. With adequate support for all affected, it is reasonable to expect continued slow steady progress just as with typically developing adults. The policy change which we need desperately is to extend support and training for individuals with disabilities through adulthood.
Awareness, acceptance, and appreciation must lead to action. We have a moral imperative to improve the lives of people with autism.
Dr. Robert Naseef moderates a special thread on our Forum called The Father Factor, Raising Children with Special Needs. Join the discussion today.