Autism and Advice

Why did I write Autism and Advice? I promised myself that this year I would write more about me and this may mean writings like this, which is a bit of a rant, which I started writing about 2 years ago when I felt quite sorry for myself. Still, I publish this. I hope it helps someone understand better what Parents with children who have disabilities deal with every day. These disabilities can be both visible and not visible.

In this world, many well-meaning folks love to feel they are being helpful and thus enjoy handing out advice even in situations where they really have no bloody idea what they are talking about. I started receiving that kind of advice from day 1 of my life, but I noticed it more the day after my first child was born. How can people without kids hand out advice? An excellent question. I realize you can know a lot about raising kids if you were the oldest sibling in a large family and such, but maybe wait until you are asked to give that advice out?

Since our son was diagnosed on the Autism spectrum, my wife and I have received a myriad of advice from professionals and friends. Some of the advice was useful and good, and some were just bad or harmful.

Some examples of good advice:

• A friend told us to go look into an RDSP as it might be a good idea for long-term planning, and I have tried to help other folks understand this important tool for your child’s future as well (see the RDSP menu tab at the top of this page).
• An amazing speech pathologist who told us that she didn’t think this was a speech issue, but handed my wife a great book, “The Out of Sync Child”, (you can find it on Amazon here The Out-of-Sync Child (amazon link)), and that described our son (at the time) and gave us hope.
• A wonderful friend recommended a local Co-op Nursery for our son.  They provided a philosophy and environment where our son could be successful.

Some bad advice?

• A condescending neurologist dismissed any of my wife’s concerns about our son’s development. He even went as far as to say, “Oh you are one of THOSE parents.” This occurred after she admitted she had read some books. She had also done some research. He then realized he hadn’t been listening to us for the past twenty minutes. He claimed he had been “observing” our son. OK fine, and then he completely misdiagnosed him.
• The folks who said, “All he needs is more structure”. “All he needs is less structure”. “He just needs some discipline”, etc., . Let me be crystal clear. When you say this or do this to any parent, they might as well hear, “You are a lousy parent”. They might also hear, “You are ruining your child”. This is because that is what they perceive.
• Yelling, demeaning or embarrassing a parent because their child is not behaving to YOUR standard, and may in fact be doing the absolute best that they can at that moment.  (This happened to Momma C8j with little C8j in tow at a local grocery store)

Many parents want empathetic listening when they have kids with disabilities. These disabilities can be visible or invisible. Empathetic listening means you listen without trying to solve the problem. You simply let them talk. Interject concern or elation in the right spots. A lot of times these folks need to let it out with a friend. They may already know the answers. They just want to let some of their feelings out. If you watched my “It’s not the nail” video on my best of post, you have seen a good example. It shows someone who wants empathetic listening.

Is There One Piece of Advice That Fits All?

With kids on the Autism Spectrum, the diagnosis is broad. Therefore, there are not many “one size fits all” solutions to the child’s problems. Bombarding your friends with the latest story about stem cells might not be what they need. They may need other forms of support from a friend. Sharing how chelation might be the answer may not be helpful either.

Maybe what they need is a sympathetic ear? If folks want advice, they will ask, and when that happens, give them your best advice, but until then…