The Dreaded “A” Word

A recent email exchange with the mother whose child had been given a tentative autism spectrum diagnosis, reminded me that to some parents, an autism diagnosis is viewed almost as a death sentence. Mother wrote that even hearing the word autism made her physically ill. It is understandable why some parents will do whatever is necessary to make that dreaded “A” word to go away, which is what makes the notion of recovery so appealing and misleading. Even children who make enormous gains as a result of Early Intensive Behavioral Intervention exhibit some rudimentary autism symptoms on conclusion of treatment. No big deal, but it’s an aspect of reality.

There seems to be something unique about being the parent of a child with autism that engenders such violent emotional reactions among parents. One seldom hears such a severe response from parents of a child with cerebral palsy or Down syndrome. There is grief to be sure, but not a sense of utter hopelessness and despair. Part of the challenge has to do with the nature of autism, and part I think arises from the parents themselves. A child with cerebral palsy or Down syndrome has a different appearance that one need not explain to a relative or stranger. It’s obvious. Not so with autism.

Relatives and friends often do not understand the behavior of a child with autism and insist that if the parent were just a bit firmer with her or him, he would “shape up.” Wouldn’t if be nice if that were true? Parents usually feel guilty about their child’s condition, not being sure if there was something they did that somehow contributed to their child’s autism. It is also deeply troubling that on the outside a child with autism can closely resemble his brothers and sisters, but inside be an entirely different child, lacking the most basic communication and social skills, and having severe behavioral outbursts over events that seems to parents to be almost nothing. It is puzzling and a bit maddening.

Parents of children with autism are often more withdrawn and socially uneasy than parents of typically developing children and as a result may be even further isolated. Many parents of children with autism fit the Broad Autism Phenotype profile, exhibiting some autism-like characteristics in milder forms themselves. They tend to by shy, may be perfectionistic and prefer predictable routines, which is often difficult when parenting a child with autism. Studies have found elevated signs of anxiety and depression among mothers of children with autism in particular, which worsens as the child’s behavioral challenges increase. Children with autism typically have limited ability to occupy themselves without nearly constant parental supervision. The child may be unable to play by herself without lapsing into self stimulation, which is very disturbing and stressful to most parents. Teaching a child independent play skills can be helpful to such parents. Using a combination of Visual Schedules for engaging in sequences of appropriate play activities, and TEACCH techniques to promote independent activities, can relieve the need for constant parental supervision.

Similarly, teaching children with autism to participate in community activities that require minimal social and language skills can enable the family to take outings and enjoy one another’s company. In Chapter 6. “Letting the Genie Out of The Bottle” and Chapter 10. “The Importance of Leisure”, in my book
Straight Talk on Autism* I included lists of potential activities and outings for children of various ages and motor skill levels, including ways of teaching pre-requisite skills.

Autism is a very disabling condition, but it doesn’t help to castasrophize, which tends to make matters worse. Most children with autism can become active members of their family, which greatly reduces the parental stress and violent negative emotional reaction. Professionals can often help families develop strategies for finding ways to incorporate their child with autism in typical family leisure and other community activities usually spend less time concerning themselves with whether their child will recover or loose the autism label. Finding enjoyment in the little things that make your child enjoyable can make all the difference in the world. A recent note from a parent with whose child we had previously worked wrote, “it was great to realize once again how far Alice has come…. She is doing well in all her classes she is in.  She has made a little friend and they both have similar interests.  The little girl (Marilyn) is so cute. One day during snack she asked another little girl to move so she could sit next to her friend Alice.  Alice beamed from ear to ear and after class she told me all about her new friend.”  [names changed for confidentiality]

Try to think less about your child’s autism and more about his or her place in the family.

*Thompson, T. (2008)
Dr. Thompson’s Straight Talk on Autism. Baltimore, MD: Paul H. Brookes Publishing Company.