“Give him time.”
“She’s the last child born in the family; everyone does the talking for her.”
“Your expectations are too high, every child has his/her own timetable.”
“Don’t put him under a microscope. Relax and he will be fine.”
“When I had my kids, the world was more simple. Your generation over-programs.”
“Look, she can read…she’ll converse when she’s ready.”
“Let her just be.”
Sound familiar? Living and observing the proverbial rollercoaster called autism is an exercise in defining human behavior. Not only do we question our own sanity, but we are obligated to navigate for family members and friends. We become unwilling guides, in a museum of dismay. We are expected to explain and respond to comments, as if giving permission for opinions when all we want to do is scream while begging: Please, let me come up for air…I am trying to process this thing called autism. Don’t muddy the already blurry puzzle…
It is the silence that is deafening. The raised eyebrows supported by an audible “tsk” are the precursors to well-meaning suggestions.
“My friend knows someone whose granddaughter did not speak until she was five. Call her.”
“Maybe your doctor doesn’t know everything.”
“Remember, there is more than one way to skin a cat. Get another opinion.”
“We’ve never had anything like this in our family.”
“He will outgrow it, just wait and see.”
Years ago, when autism was an uncommon diagnosis, a group of mothers met monthly at their child’s private school which was dedicated to communication disorders. It was a time for sharing and purging thoughts of frustration. One mom was particularly upset with her mother-in-law. “Does she think I want my kid to be different? Her unsolicited advice kills me. She says I indulge him and that he is not different, just spoiled. Try waking up at three o’clock in the morning with Adam, while he literally climbs the walls!”
Another mom suddenly exploded with emotion. “You think that’s bad. We finally agreed to go the route of implementing a behavioral plan to address Mary’s tantrums. She was allowed to earn a piece of candy when she complied with a prompt. It seemed to be working, until my mother decided that our daughter should have M&M’s whenever she wanted them. She told me that I am too hard on my own child! There went the plan.”
A particularly stressful situation was explained by Jason’s mother, who felt ridiculed by her own sister. “Why does she compare her typical son to Jason? She chided me when I shared my concern over his suffocating obsession with trains. She told me to calm down, that I was being overdramatic and that her boy liked trains too. She has watched as we have tried to escort Jason away from his toy train track. She heard his high pitched wail. She saw him tear at his clothes. Overdramatic? Hardly. I need validation from my own family.”
The topic for one discussion revolved around the subject of blame. Parents of special needs children are often fraught with guilt. The “whys” and “hows” may remain unanswered and paralyzing for those who hang on to the “what ifs.” The constant mantra in this support group was that the best action be a pro-active one. One mom said, “We can’t whine about what we have, our obligation is to keep going. You throw enough stuff against the wall, something has got to stick.”
Nevertheless, family members are verbal in offering their criticisms, albeit well meaning. Perhaps it is time to treat family as you would a stranger. Educate and make them aware.
- Show them a video glossary illustrated on the Autism Speaks website (www.autismspeaks.org/what-autism/video-glossary) which shows side by side examples of typical children and atypical children.
- Make a list of facts about your child.
- Show data about how many times your son/daughter responds to questions
- Show data as to how many times your child shows eye contact
- Show data as to how many times your child complies
- Show data as to how many times your child tantrums
- Create your own data trial and enlist the suggestions from your family member
- Itemize testing results in a simple and uncluttered manner
- Talk about his/her strengths and weaknesses
- Show which therapy has worked/not worked
- Re-visit the same data after 6 weeks
Perhaps it is necessary to spoon feed this information; an educated family member is a more willing partner. Autism is a family affair and the more people that you can recruit toward a common goal will ultimately be the best effort for your child.
Finally, share the science with your family members: The Autism Science Foundation website (www.autismsciencefoundation.org/aboutautism.html) will detail research opportunities into discovering what makes autism tick.
Robin Hausman Morris is a freelance writer and can be reached at RobinHausmanMorris@gmail.com. Robin is a parent examiner for Examiner.com – www.examiner.com/autism-and-parenting-in-national/robin-hausman-morris.