Has your autistic child trained you? Be honest.

by Amy Wright Bham

When we become parents, our lives change. There’s no doubt about that. But parents of autistic children often experience changes in their lives and lifestyles that go way beyond anything they could possibly have imagined.

But you’re probably fully aware of this phenomenon. If you’re like most parents of an autistic child, you’ve probably found yourself actually arranging your home and your life around the needs and demands of your child. You put the food in the same dish every time. You put the dish in the same place. And you don’t dare move it. You probably dread — and maybe even avoid — hair washing, tooth brushing, and trips to the doctor. You drive six blocks out of your way to avoid the local park, and the meltdown that invariably happens when your child sees it and realizes that’s not where you’re going. And, in extreme cases, you stop dining out, socializing, and end up physically and emotionally isolated.

Essentially, you abandon many of your parental instincts — like the fact that you know teeth need to be brushed — and bend to the mighty will of your autistic child. What’s more, you give up things you want to do and enjoy doing because they are just too difficult.

Remember, we’re being honest here. Your autistic child has trained you. Your child is running your family.

Don’t beat yourself up too much. It really is a natural reaction to having a child with special needs. You desperately want to help your child and to make his life better. You don’t want him to suffer, so you suffer instead. It’s admirable. It’s understandable. But it’s not doing you or your child any good. In fact, it could be impeding your child’s progress.

Here’s a perfect example: Jack is six years old, autistic and non-verbal. He attends the local elementary school, is in a regular first-grade class, has a full-time aide, and gets therapy and other services throughout his school day. Jack is also very stubborn, and not too enthusiastic about doing his work at school. If he’s in the mood for speech therapy, the session will go smoothly. But if he’s not, everyone knows it from the tantrum he throws. So his aide started taking Jack to the playground when he refused to work. Wow, lucky Jack. Not only does he not have to do his work, but he gets to go to the playground and swing. Jack has successfully trained his aide. Nice work, Jack.

Once again, you don’t nee to be too hard on yourself. You just need to remember one very important fact: many of these children are quite bright, and it doesn’t take them long at all to realize a tantrum will make a parent or caregiver relent and give them their way. And while it’s good to know how well their brains are working, it would be nice if they would use their brains for something other than manipulating their parents and teachers.

Another thing you need to realize is that when the child is in control, it’s not good for the child, either. Consider Jack again. Of course he’s happy he ends up on the playground instead of in speech therapy, but he’s not getting any better on the playground. He needs to be in speech therapy. These children need their hair washed, they need their teeth brushed, they need to take vitamins, they need to eat healthy food, and they need to receive services. They need to do these things in order to get better.

However difficult it is, you have to take back control. You have to be the boss. Which means you’re going to have to get tough.

When Jack was in a special pre-school for children with developmental disabilities, the very skilled and successful teacher who ran the program was tough as nails. With the children, and the parents. She was no-nonsense, and laid down the law every day and in every instance. For example, when a parent of one of her autistic students realized she was giving the children multi-colored goldfish crackers at snack time, she told the teacher that the child would only eat the orange-colored goldfish. The teacher replied, in no uncertain terms, that she did not care what color goldfish the child preferred and if he didn’t want to eat them, then he’s just wouldn’t have a snack. Period. No changing the plan. The child would have to adapt. And eventually, he did. Seems like a small victory, but it was really huge.

But, truth is, it’s no fun being tough. It’s so much easier to just give the child his way and carry on. You’re so tired, and who cares if the child eats of the same plate every time? What’s the harm in that? Unfortunately, it is harmful, for everyone. And while you can’t possibly expect to go to the mat about absolutely everything — what parent wants to constantly be at odds with their child? — your child needs you to be tough. Like a typical child, your child does not know what is best, and they should not be able to decide how the household and the family works. That’s your job.

There will be many, many tears. Lots of meltdowns and difficult moments. But as you are probably aware, being the parent of a child with special needs is one of the most difficult things you will ever do. But it is the most important thing you will ever do, too.

Help is available. Skilled professionals who work with autistic children can be excellent resources, as are other parents who have gone through the same thing. And, of course, support and assistance from family and friends is invaluable. Whatever help you need, get it and then get down to work. Your child is counting on you.