Wednesday, February 16, 2011


Last week in my blog entry, “Inquiry,” I described a recent experience in which a special education representative asked me some rather nosy questions. Instead of asking about Alex and how autism affects him, she seemed to be more curious about our parenting skills, inquiring about how we had taught Alex about sexuality, why we home schooled him, what we predict his future holds, and what we would do differently. Perhaps I have interpreted her actions unfairly, but I feel she was more interested in putting me on the spot than taking advantage of learning more about autism. To be fair, until we had Alex and learned more about autism, I probably wouldn’t have known what to discuss with a parent who had a child with autism. Autism can be the proverbial “elephant in the room” that some people may not be comfortable discussing, but avoiding the subject can be equally difficult. From our experience, people can talk about Alex and his autism in various ways that show interest and concern, and we have been blessed to have family and friends who have shown their support through their thoughtful comments and questions.

My favorite topic of conversation is Alex, so when people ask about him, I’m happy to talk about him. Even asking, “How’s Alex?” indicates a caring I always appreciate. Depending on my closeness to the person who asked and how Alex is actually doing at the time, my response may range from a cursory “Fine” to a more detailed update of his current status to a completely honest assessment of his recent moods and behaviors. The latter explanation is usually only given to very close family members and friends or my autism parent friends who understand the ups and downs of life with autism. Another question I always appreciate is, “What are Alex’s current interests?” or a similar question: “Does he still like ___?” Because Alex has unusual interests, these conversations are usually lively, and I’m pleased to share what topics he’s currently pursuing, especially to those who have followed his progress along the way. Moreover, I am grateful that these questions not only show an interest in Alex but also a concern for him as a person, not just a special needs child. In an earlier blog “Support,” I discussed how friends had given Alex various things that reflected their knowledge of his special interests. Not only do I appreciate such gestures of kindness, but I am always especially pleased to know that people care enough about him and me to do something nice. Last year, my cousin Diane was traveling around the Southern United States, and knowing Alex’s interest in geography and meteorology, she sent him postcards from her various destinations along the way and included the current weather conditions in her notes to him. Because he was so enthralled with those postcards, he has saved all of them for future reference. Similarly, after my friend and co-worker Jody attended the NASCAR Brickyard 400 at Indianapolis Motor Speedway last summer, she brought her lanyard and the tickets it held for Alex, knowing that he especially likes that particular race. Not only did Alex shudder when I brought it home for him (as he does when he is especially pleased), but he slept with the souvenir from the race, which he only does with his most prized possessions. I often think that Alex has a special sense about people who genuinely care about him and especially treasures what those people give him.

Aside from showing interest by asking general questions, I would suggest four basic hints for those who would like to show support for parents whose children have autism.
1. SHARE—If you hear about new autism research on the news or read an interesting article or book about autism, pass along this information. I always appreciate when someone tells me about something new they’ve heard or read. Often, my friends will preface this news with, “You’ve probably already heard about this, but…” While I try to keep up with all the latest autism research, I still am interested in any information others have seen or heard.
2. SYMPATHIZE—While I don’t need or want pity, I do appreciate understanding of my unusual situation. Many times I cannot commit to various tasks or engagements because Alex needs me. Moreover, at times we have to cancel plans suddenly because Alex’s behavior prevents us from taking him with us or makes us hesitant to leave him. Canceling at the last minute is always a possibility in the unpredictable life with a child with autism, and I am always grateful when others understand that some things can’t be helped.
3. SUPPRESS—While I’m certain some people offer advice trying to be helpful, unless you’ve raised a child with autism, you really don’t know all the ins and outs that may have gone into a parental decision. Many times, we choose our battles with Alex, and ignoring some behaviors may be necessary to prevent a full-scale meltdown. Even if you don’t agree with methods or therapies the parents are using with that child, you need to trust that they are doing what they believe is best for that child.
4. SPOTLIGHT—Although autism presents many obstacles, we try to focus upon Alex’s strengths and use those to overcome his weaknesses, and we are thankful to others who do the same. Certainly, his language, social and fine motor skills are delayed, but he is funny, smart, and obedient. While his handwriting is barely legible, he can type faster and more accurately than either Ed or me. When other people point out Alex’s good qualities, they endear themselves to us because they look past the weak areas and see his blessings and gifts. I know that Ed and I are thankful for the support we have been given, and I like to think that there are special places in heaven for those who have been understanding of children with autism, like Alex, and who have shown them kindness through their caring and concern.

“This is only my suggestion. It’s not meant to be an absolute rule.” I Corinthians 7:6


K. C. said...

Beautiful! :)

mamafog said...

What a great post. It is good to see some advice as to what to say to a parent of a child with autism. There are so many lists of what not to say. Even though my own child has ASD, I sometimes wonder what to say to parents.

Pam Byrne said...

Thanks so much for your nice comments, K.C. and Mamafog!

Take care,