Talking About Autism

Yesterday I read an interesting article on the Woman’s Day magazine’s website entitled “9 Things Never to Say to a Parent of a Special Needs Child.” [To read this article, please click here.] Citing comments that mothers of special needs children have had people actually say to them, the article suggests why these remarks might be offensive and offers alternatives that may be more acceptable. While I can understand why some of these comments might seem rude or hurtful or just nosy, I really think that most people who ask questions or make comments like these genuinely don’t intend them in a negative way. In fact, I believe that many people honestly want to help, but they may not know how. Having been an autism mom through toddler, teen, and now twenties phases, I have a little different perspective that has come over time, and I offer my thoughts on some of the comments the article deems taboo.

“Wow, you must be so busy.” The article describes this remark as having a condescending tone, which I personally don’t see. All parents are busy, and special needs parents often have additional responsibilities, such as coordinating various therapies for their children. Yes, I’m busy dealing with Alex, and I’m thankful for organizational skills that help me keep things rolling and make me a queen of multitasking.

“You should take care of yourself so that you can take care of him.” The article suggests that this comment is unrealistic because special needs parents are too busy and/or have too many responsibilities to take time for themselves. However, the analogy of the oxygen masks on airplane flights seems to apply well: parents must place the masks on themselves before putting them on their children. In order to help their children, parents must address their own needs, too. In fact, I have told other autism moms that they need to take care of their child’s mother; too often, we think we must always put our own needs last. Being a parent requires sacrifice, and being a special needs parent requires additional sacrifices. Yet, we cannot take care of our kids if we are not at our best.

“We’re only given what we can handle.” This comment, which is often enhanced with religious significance by attributing the giver as the Lord, is described in the article as being a “meaningless platitude.” I suspect that parents who find this comment offensive either feel uncomfortable that they are perceived as stronger than other people, or they don’t appreciate viewing their child’s disability as a test from God. On the other hand, this statement is likely intended as a compliment and a reassurance that they can cope with the obstacles that come with raising a special needs child. I’ve always liked Mother Teresa’s quote about dealing with difficulties: “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”

“Have you tried…?” According to the article, this comment annoyed parents who didn’t appreciate advice from others who were not special needs parents. One mother remarked, “You have no idea what you’re talking about.” Although other people may not have first-hand experience, I appreciate when others show interest and care enough to share research or information they have found on autism. Because I have spent so much time researching autism, I usually have already heard about the information, but I’m happy to discuss it and look for new insights. Over the years, we have tried a variety of approaches hoping to help Alex, and I’m always on the lookout for something that we may not have tried yet. Instead of viewing that question as intrusive, I see it as helpful.

“What’s wrong with him?” While I tend to agree with the article that this comment is probably rude and nosy and certainly could be phrased better, I think that the motive behind it may be concern. Maybe I’m not as offended because I’ve asked the question about Alex myself in frustration, fear, and/or bewilderment. In fact, in moments of impatience, I admit that I have asked Alex, “What is your problem?!”  And then I remember he can’t help what autism has taken away, which motivates me even more to attempt to regain what has been lost and to appreciate the progress he has made in spite of the obstacles. That keeps me busy as I try to take care of Alex and myself, remembering that I can handle all things through Christ who strengthens me, and as I try different ways to eliminate what’s wrong to make him the best he can be.

“But you belong to God, my dear children. You have already won a victory over those people, because the Spirit who lives in you is greater than the spirit that lives in the world.” 1 John 4:4