Autism and Advice

in Autism, Off Topic

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 was feeling quite sorry for myself, but I publish this in hopes it helps someone understand better what Parents with children who have disabilities (both visible and not visible) deal with every day.

In this world there are many well-meaning folk who 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 started to notice it more the day after my first child was born. How can people without kids hand out advice? A very good 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 have been quite useful and good and some was just bad or harmful.

Some examples of good advice:

  • A friend that 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
    ), and that described our son (at the time) and gave us hope.
  • The wonderful friend that 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 who dismissed any of my wife’s concerns about our son’s development, and went as far as to say, “Oh you are one of THOSE parents” (after she admitted she had read some books and done some research). He then admitted he hadn’t actually been listening to us for the past twenty minutes, because 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, you might as well be saying, “You are a lousy parent and you are ruining your child”, because that is what they hear.
  • 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)

I think what a lot of parents want, when they have kids with  disabilities (be it visible or invisible), is for someone to do some Empathetic listening with them. Empathetic listening implies you listen and don’t try to solve the problem, simply let them talk and interject concern or elation in the right spots. A lot of times these folks just 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, that is a good example of someone who wants empathetic listening.

Is There One Piece of Advice That Fits All ?

With kids on the Autism Spectrum, given it is such a broad diagnosis, there are not many “one size fits all” solutions to the child’s problems, so bombarding your friends with the latest story of how stem cells might fix your kid, or chelation might be the answer may not be what they need from a friend.

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…

{ 6 comments }

  • Matt January 9, 2014, 4:44 PM

    Awesome post, you should definitely post more like it.

    While my daughter doesn’t have your sons condition every child is unique and there maybe more to a story than at first glance. I still remember getting dirty looks from people when at the LCBO my daughter was acting up a bit and not talking very well – she was just being a 2 year old, people assumed she was older than she was because of her height (She was 2 and looked like a 5 year old). That instant judgement still pisses me off years later. I gained a lot of respect for every parent who deals with a child with a handicap that day .

    Promise I won’t give advice, but happy to listen

    Reply
  • Bet Crooks January 8, 2014, 10:50 AM

    As a parent to children who are a bit different than the “norm” I have also learned not to share too much of the week’s troubles with parents who aren’t raising similar children. They don’t get it; their advice is unhelpful; and they are 100% sure they know they are right.

    I try to teach my kids to look underneath before judging. Is that child fat or is the child on steroids to control a medical condition? Is that child throwing a tantrum because they are naughty or because their parent took them shopping at nap-time (and does the parent have any choice or does the parent work shifts and this is the only way they can shop). Is that child swearing out of rudeness or out of an inability to stop certain words from coming out? It doesn’t take much looking to find examples within our group of friends, neighbours, school mates and family to help explain that what they think they’re seeing/hearing may not be what they first think.

    I’m glad you did get some advice worth hearing and I’m sure there are readers who appreciate you passing that kind on!

    Reply
    • bigcajunman January 8, 2014, 10:57 AM

      Well stated, and very true, thanks.

      Reply
    • Matt January 9, 2014, 4:32 PM

      Well said, looking on the surface isn’t always enough, and all too often we judge too quickly.

      Reply
  • Phil January 8, 2014, 7:58 AM

    Kudos to you on the information post. I am a volunteer with the Canadian Association of Disabled Skiers (CADS) instructing at Calabogie Peaks. If there is one thing I have learned from my experiences working with physical and mental disabilities it is that for the most part I need to smile, have patience and listen, to both my participant and parents/guardians. All participants in the program deal with things differently, but one thing is for certain, listening and observing actions/reactions is the key to unlocking and growing interest in learning and eventually unlocking the fun and good times! – Cheers.

    Reply
    • bigcajunman January 8, 2014, 8:08 AM

      Agreed, I know even I sometimes want to “leap in and give my advice”, but it is always better to wait and see IF your help is needed, and HOW you can help.

      Reply

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