Why did I write Autism and Advice? I wrote this in 2014, my son was 9 years old and we were uncertain what the future had to hold for him. Now, I can say this with confidence: the uncertainty never fully disappears—but neither does the learning. I hope it helps someone understand better what Parents with children who have disabilities deal with every day. The advice hasn’t changed… but my tolerance for bad advice definitely has.
In this world, many well-meaning folks love to feel 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, 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 was 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 an environment where our son could succeed.
Examples of 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 the time, these folks need to let it out to 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 in 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 additional 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; when that happens, give them your best advice. But until then…
Redux From a Grandfather
I now have a son on the spectrum, and a grandson as well. This is not something that gets easier over time; it simply morphs into new challenges. Watching my grandson, I wonder how his parents will deal with all of this. All we can do is help support them as best we can. I continue to learn that sometimes advice is best kept to yourself.
Final Thought
The worst advice is usually the most confident.
Autism References (internal and external)
- Some of my own articles about dealing with Autism.
- Registered Disability Savings Plan (RDSP)
Government of Canada. (n.d.). Registered Disability Savings Plan (RDSP). - The Out-of-Sync Child
Kranowitz, C. S. (1998). The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder.
This book is widely referenced by professionals working with children who have sensory challenges, including those on the Autism spectrum, like my son. - Autism Speaks – What is Autism?
Autism Speaks. (n.d.). What is Autism?
Retrieved from https://www.autismspeaks.org/what-autism - Autism Ontario – Resources and Support
Autism Ontario. (n.d.). Resources and Support for Autism.
Retrieved from https://www.autismontario.com - Centers for Disease Control and Prevention (CDC) – Autism Spectrum Disorder (ASD)
Centers for Disease Control and Prevention. (2023). Autism Spectrum Disorder (ASD). Retrieved from https://www.cdc.gov/ncbddd/autism/index.html - National Autistic Society (UK) – What is Autism?
National Autistic Society. (n.d.). What is Autism?
Retrieved from https://www.autism.org.uk/advice-and-guidance/what-is-autism - Vaccines and Autism Myths
WTF they did to this article is CRIMINAL. I include it only for completeness, and hope the CDC gets their brains back some time in the near future.
Centers for Disease Control and Prevention (CDC). (n.d.). Vaccines Do Not Cause Autism. Retrieved from https://www.cdc.gov/vaccinesafety/concerns/autism.html
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
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!
Well stated, and very true, thanks.
Well said, looking on the surface isn’t always enough, and all too often we judge too quickly.
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.
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.