Autism and the Difficult Topics of Conversation

Another autism site I follow recently posted that her mother was very ill and wouldn’t survive more than a few days. She took her 14 year old son with autism to see his grandma in the hospital and let him say goodbye in his own way. He and his grandma were extremely close and mom felt it was important for him to do this. The backlash I saw on her post was immediate. While some were supportive of her and expressed their sympathy, others were calling her a terrible mom for putting her son through that. I was shocked.

Autism is not easy. It’s never a cut and dried decision that lasts. When my children lost their great grandpa, he was in the care center and they did go visit him a few times – when he was still himself and able to talk to them like always. I think Rob knew what was happening, but I doubt Casey did. When my grandparents died, they weren’t in a hospital and it wasn’t something that we knew was coming. Losing their grandpa a few years ago was harder on them, but also easier, as they both knew he was going to Heaven to be with his dad and mom. He was sick for a while and they saw him in the nursing home, but not the hospital.

Casey and Rob seem to take death in stride. They were both upset about not seeing them until they get to heaven (they both know Heaven is a place, but they don’t always understand why we can’t go and come back, like a vacation.). When someone dies (or when we lost our dog Eve a few years ago0, I simply told them the truth. That Eve was very sick and she died. That grandpa Bill was very sick and he died. And that they were both in Heaven now, with God. Casey talks about Heaven often, Rob – not much. But, of the two, she is more likely to talk than him. He is more likely to talk about the person – Eve, Grandpa Jones.

I didn’t know what they would understand. They are smarter than most people give them credit for because they don’t talk much. I have no idea if I told them the right things to ease their missing that person. It doesn’t seem that I scared them and for that, I’m grateful.

The thing is, autism or not, there are difficult things you need to talk to your child about. Will they understand everything? Who knows? But if you don’t talk to them, their minds will decide for them and what they think up may be the worse thing ever. (For example, I would never tell them someone “went to sleep” when they died – they might think if you sleep, you never come back and God knows we have enough trouble sleeping without that, too!)

When their dad and I divorced, I was really at a loss to explain that to them. Finally, I decided to give them no details – only what would directly affect them. I simply told them that Daddy would have a new house and that they could go see him as much as they wanted. Mandy, of course, had more questions and I answered those as honestly as I could. What Casey and Rob thought about the divorce is a mystery as neither as ever mentioned it to me. I didn’t know what to say to them, but it wouldn’t have been fair for me to not tell them it was happening.

Talking to Casey about her period was another tough topic. But, again, I told her a very simplified version of what was happening. She only said, “Boys?” and I told her no, that boys don’t have them because boys don’t have babies. She’s never mentioned it again. They both know boys and girls are different, but neither seems to care. They have little interest in the opposite sex, though Rob may grin at pictures of women once in a while. 🙂

Drugs are another thing you may need to discuss with your child. I have talked to mine, but since Casey refuses to take an ibuprofen for a headache because the doctor didn’t tell her she could (tho, at our last visit, their neuro wrote in his orders that Casey could take an ibuprofen for a headache and to ask mom for one when she needs it, so she will now. How cool was that of him?? 🙂 ), I know she won’t take anything from anyone. Rob will take ibuprofen, but only from me or Mandy. But – they are also very sheltered. Your child may be higher functioning and may have friends say “try this, you will like it!” and do it. You have got to talk to them. You don’t need all the answers – only to talk to them!

Even talking to your child about their autism is important. Imagine knowing you are different, but not knowing why and no one will tell you! How scary is that? When Casey was 8 – 9, we were talking about autism (actually, it was IEP time and I told her I was trying to think what she would like to learn – not really expecting an answer, but you never know!) and she said “hurts my ears.” She couldn’t explain more, but I took it to mean that to her, autism meant her ears hurt. Too many loud, deep sounds and she just couldn’t handle it some days. She has always had the more sensitive ears of the two of them. His are sensitive, too, but not to the degree hers were. (AIT – auditory intergration therapy helped her a lot!)

Just because your child has autism doesn’t mean you don’t have to have the difficult talks with them. You will need to talk to them at their level. Decide what you want to tell them, break it down into simple sentences and do it. You don’t even need to do it all at once! A minute here and there will accomplish the same thing as an hour lecture that they may tune out anyway. You have to tell them about death, drugs, divorce, strangers. It won’t be easy or fun (but is it easy or fun with typical kids, either?? nope!) but that’s your job as a parent.

Obviously, depending on your child’s functioning level and your lives, there are some topics you may get to avoid. Maybe divorce isn’t something you need to talk about. If your child is lower functioning, maybe drugs aren’t something you need to discuss. But, death will happen. Please don’t leave your child wondering why someone never comes to see them anymore! Remember that just because your child doesn’t talk, it doesn’t mean they don’t think! They know more than we realize (as I’m constantly finding out!) and it’s unfair to them not to know what is happening in their lives.

Remember – short simple talks. You don’t need to share a lots of details, unless they ask. And always be ready to answer questions if they are able to ask. Autism or not, you are a parent, first – there’s no avoiding the hard talks! 🙂