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PUZZLE PIECES – TIPS FOR THE EXTENDED FAMILY OF A CHILD WITH AUTISM

By Laura Townsend Kane, parent of a child with autism

Note: Laura Townsend Kane, parent of a child with autism, has written a guest blog post about how extended family can help when someone in the family has autism.

Puzzle Pieces – tips for the extended family of a child with autism
My sister recently asked me to write a guest post for her blog. Why? Because April is Autism Awareness Month, and Peter – the youngest of my three sons – has autism. When she called to talk to me about the guest post, she seemed to be struggling to express her idea. “Can you write something about how we can help?” she asked. “When the families are together, I want to help you with Peter, but I never know if you want the help,” she continued. “When would you prefer to handle things alone? What should we say, or – for that matter – what should we not say? What can we do to make things easier for you guys?”

I can understand her confusion and frustration. Autism is an extremely puzzling disease, which is why the puzzle piece has become a widely known symbol for autism spectrum disorders. Recent statistics indicate that 1 in 50 school-age children are affected by autism. This fact is staggering and alarming. What makes things worse is that the disease is different for every child, and every family struggles with different issues. There is no manual that would be helpful for all families who face autism. However, I can speak for my own family, and maybe some things that work for us might work for others. So here is my attempt at offering tips to those who have a child with autism in the extended family:

To Help or Not to Help
You watch as your sister and brother-in-law face a difficult situation with the child. The exact issue does not matter; you just want to know if you should step in and help. A simple rule of thumb would be this: help when you are asked to help. If I say, “Can you help?” I know that you will jump up immediately. But if I don’t ask, it means we have the situation under control. This might not be the case for parents who find it difficult to ask for help. It took me long time to learn to ask for help without feeling as though I am imposing on someone. But I have learned that I can’t “do it all” if I want to remain in a healthy place physically and emotionally. So I promise that I will ask for help when I need it.

Should We Offer to Babysit?
You worry that your loved one might be insulted if you offer to babysit, as if you thought they couldn’t handle their own child. There was a time when I thought I didn’t need a break; that I could handle everything. If I left my child with a sitter, even if it was a family member, I felt guilty for taking a bit of time for myself. I even felt that nobody could care for my child as well as I could, so I had no right to give that responsibility to someone else. I have since learned that those attitudes were detrimental to the well-being of our entire family. EVERYONE needs time away from care giving in order to refresh and renew. This is called “respite” and studies have shown that periods of respite are beneficial not only to the family care givers but also to the child.

So the answer is: Absolutely! Offer to babysit! I may not take you up on the offer immediately, but I’m pleased to have the option. There may be a reason why I refuse the offer at the moment, but keep offering because it is greatly appreciated.

The Best Time to Talk
Sometimes I just don’t want to talk about it. That is the plain truth. Parents who have a child with autism are constantly bombarded with information and advice, questions, statistics, studies, doctor’s reports, therapies… it’s hard to find a moment when autism and its effects are NOT on your mind. It is exhausting. There are times – like on a holiday, for example – when I just want to enjoy being together with my extended family, to relax, and not have to be in my “autism advocate” role. You might think that a family get-together is a perfect time to catch up on the progress the child has made, or to discuss controversial therapies, new studies, alarming statistics. But try to resist asking too many questions around a dinner table. When that happens, I personally feel like I am on trial and I immediately stop enjoying my meal. There will be other opportunities to catch up on the facts. If I offer some information without being asked, that’s a clue that I am ready to talk.

Carry on Like Normal
We recently celebrated Easter Sunday at my sister’s house. During the meal, there was a potty training “incident” with our son, and it took me and my husband about 20 minutes to get everything cleaned up and settled. When we returned to the dinner table, everyone was carrying on with the meal and the conversation as if nothing had happened. I truly appreciated that. Nobody made a big deal about the incident, and I was relieved. Sometimes we just wish everything were “normal” and when family members take things in stride without making a big deal about them, it makes things just a little bit easier.

What NOT to Say
I hear it all the time. “This is Mary. She is autistic.” “Joey is autistic.” That word – autistic – bothers me. I am not denying the diagnosis. My son has autism. But he is not “autistic.” Autism is a disease. The word “autistic” takes the disease and turns it into an adjective. If someone has cancer, do you say, “This is Lisa. She is cancerous”? If someone suffers from dementia, do you introduce him by saying, “This is Jim. He is demented”? Of course not. Saying that a child is “autistic” sounds as if you are defining the child by that adjective; that you are describing him or her with that one word – a word that carries with it some very inaccurate stereotypes. How can anyone’s personality be described with one word? My child’s personality is made up of many different characteristics – some good and some not-so-good. When introducing him to someone, rather than saying, “This is Peter. He is autistic,” I say, “This is Peter. He is four years old. He’s a happy, very busy little guy.” In the course of the conversation, I may eventually say, “Peter has autism,” but I choose not to define him as primarily “autistic.” It’s a meaningful distinction.

Be Aware and Reserve Judgment
I can remember, in years past, seeing a child misbehave in a grocery store and thinking, “What a brat! That parent needs to do a better job disciplining that child.” In the process of learning more about autism during the past four years, I have also learned to avoid being judgmental about a child’s behavior. I am not as quick to jump to conclusions when I see a child “acting out” in public. Remember – one in every 50 children you see may have autism. You never know what might be at issue with a child or a family; you never know what struggles they might be facing. Some children are extremely sensitive to light and sound or any kind of visual or auditory stimulation. Imagine how torturous it would be to go to a grocery store if you felt as though you were being bombarded with images and sounds. You would be frightened and overwhelmed and would just want to escape. The distress would be compounded if you could not speak and could not express what you were feeling. So, please – the next time you see a child “misbehaving” in public, say a quick prayer for that family and reserve your judgment.

There are many more issues that could be discussed regarding autism; there are a multitude of pieces to this puzzle. But it is my hope that at least some of what I’ve written here will be helpful to other families who are struggling with the same issues that we are. I have to say, though, that simply having a family that is supportive and caring can go a long way to easing the burdens of autism.