Tuesday, September 29, 2009

Autism: The things some people say, Part II

I still want to keep the talk up about my previous post regarding autism and bullying. I’ll visit the topic again soon, as a matter of fact.

Today however, I was inspired to talk about something I know many of us have dealt with and others have written about as well --- that is the insensitive, uninformed (I was going to say “ignorant”, but I won’t say “ignorant”, because “ignorant” would be too harsh --- I mean, you can say “ignorant” if you choose, and that’s you --- fine by me, it is a fine word and all; I just choose not to use the word “ignorant” as a personal preference) things people say to us when it comes to our autistic kids.

A little while ago I touched on this issue and would like to go into it a little more. I’ve compiled a little list that I have either heard, vetted from the Internet or that we have had said directly to us. When I’ve seen/heard responses to many of these comments, the retorts from the affected families are sometimes snappy and often sarcastic. Usually the implication is “this is what I would have/wish I could have said.”

So I’m going to add another approach.

I’d first like to suggest some serious, non-biting responses, to insensitive (or even dumb), and sometimes just plain old “uninformed” things you may hear. Since it’s far more fun, however, to use those snippy-snappy replies, I’ve included somewhat more “creative” responses, too, just in case that’s how you roll:

The Comment: “Well, in today’s day and age, that’s the behavior you have to expect when you don’t spank your kids.”
Suggested Response: “We’ve actually tried nearly every form of discipline anyone has ever thought up to control his behaviors. We’ve learned through trial and error, and trying to figure out what’s causing the melt-downs, that these are not behaviors of a ‘kid being bad’. He’s hypersensitive.”
What I’d Like to Say: “Thanks for the advice, Professor. Why don’t I leave him with you for a week (or even a day) and we’ll see if you can knock the autism out of him.”

The Comment: “That’s the behavior of an abused child acting out.”
Suggested Response: “And to think, yesterday, some lady told me I don’t spank him enough. While abuse can happen in homes of special needs children (as it can in any home, I guess), I take him to so many therapies and doctor appointments, I assure you I would not want to add the need for another clinic visit.”
What I’d Like to Say: “And to think, yesterday, some lady told me I don’t spank him enough. Seriously, please call DCF, or the Police or any other agency --- and ask them if they could please bring a behaviorist or Personal Care Attendant with them. I’m having a hell of a time getting the State and my insurance to pay for them.”

The Comment: “Well then, why can’t you just control your child? Can’t you just make her stop?”
Suggested Response: “I wish!”
What I’d Like to Say: “I wish!”

The Comment: “If he’s talking, are you sure he has autism?”
Suggested Response: “Autism is a spectrum disorder. That means it comes in as many flavors as there are persons afflicted with it. Some kids talk, some do not.”
What I’d Like to Say: “Talking? Lady, all he’s doing is quoting every line from the new Blues Clues DVD we just bought. Incessantly. Loudly. And to answer your question: Yeah, I’m pretty sure he has autism.”

The Comment: “Well, remember that God never gives you more than you can handle.”
Suggested Response: No suggestion. I think walking away is your best answer to this one. However, if you must respond…
What I’d Like to Say: “Bi... --- I mean ma’am, at this point, unless you'd like me to show you what I really can handle, I’m going to have to ask you to please remove yourself to your automobile and leave the area quickly.”

The Comment: “Some kids are late bloomers. There are lots of cases where kids don’t talk at four years old.”
Suggested Response: “Ma’am, my child has been tested and re-tested. His hearing has been checked and he has a speech therapist. While I appreciate that you are trying to reassure me, we have been working on this for two years now.”
What I’d Like to Say: “Do those same kids continually hand-flap, chew their sleeves, babble uncontrollably, melt down in a kiddie playground, beat on the windows and purposely injure themselves on a daily basis, too?”

The Comment: “Autism, huh? So that means he’s a genius like Rainman.”
Suggested Response: “While savants do exist, they make up approximately 1% of all people diagnosed with autism. Nope, he’s just a regular little boy.”
What I’d Like to Say: “Potato Chips in your shopping cart, huh? Bet your cholesterol is through the freaking roof.”

The Comment: “He doesn’t look disabled.”
Suggested Response: “He is.”
What I’d Like to Say: “Would you like me to hang a ‘handicapped’ sign around his neck and push him in a wheelchair? Up until you opened your mouth, you didn’t look ignorant.”

The Comment: “If it helps any, I have a friend at work that has an autistic nephew. So I understand what you’re going through."
Suggested Response: “I sincerely appreciate that you are trying to relate to me. I don’t say this to be rude, but you honestly do not understand at all what my family is going through.”
What I’d Like to Say: “Great! Then that means you have experience. I’ll expect you at my house tonight at 8 to babysit.”

The Comment: “‘Famous Celebrity A’ says that you should try ‘XYZ’ diet/therapy.”
Suggested Response: “Thanks for the suggestion.”
What I’d Like to Say: “‘Famous Celebrity A’ has unlimited time, money and resources to try any and every snake oil diet/therapy that comes back in Google results. Unfortunately our insurance will only cover certain things, if anything at all. If you can give me some money, your time, and a team of nannies, I’ll try whatever you suggest.”

The Comment: “Gosh, I don’t know how you do it.”
Suggested Response: “It’s all we’ve ever known, so it’s typical for us.”
What I’d Like to Say: Nothing funny about this. The Suggested Response says it best.

The Comment: “Aren’t you just using his autism as an excuse for his behavior?”
Suggested Response: “Actually, his behavior is a symptom of his autism. He has not control over it.”
What I’d Like to Say: “If it will get this conversation over with sooner, then the answer is ‘Yes’.”

The Comment: “Honestly, how hard could raising him really be?”
What I’d Like to Say: “You can take him for the day, if you’d like to know.”
Suggested Response: “Not as hard as it is for him to have to live with it.”



Rachel said...

I just discovered your blog through the Faces of Autism site. (I'm the person whose picture is right above that of your son!)

I love this post, and I so wish I could remember some of these snappy rejoinders in real-time. As an autistic adult, I hear lots of creative riffs on "Why can't you do xyz today when you did it last year?" and "If you can do abc, then you can't be autistic." Most of the time, I am so shocked by people's rudeness and cluelessness that I just get paralyzed, hoping that the offending party will wake up from his or her dream world sometime soon. (It doesn't usually happen.)

Of all the things that people say, "God never gives you more than you can handle" is probably the one that most drives me up the wall and back again. I could go into a diatribe about the levels of suffering that people endure in this world (suffering that far exceeds mine), but I'd be sure to lose my audience. So, I'm working on coming up with three simple words in response: "Yeah? Try it."

Corrie Howe said...

Jon, thanks for sharing the comments, the suggested responses and the ones you are really thinking. You could probably write an entire book just from the comments we hear.

At the risk of upsetting people on either side, I am a believer in God. I used to believe this commonly thrown out statement. But I don't any more. I think He allows more than we can handle so we ask Him to help us out. Just my personal experience. I'm used to making a lot of believers and unbelievers mad. :-).

My parents used to be the ones making these kinds of comments. Then they watch Jonathan a few times. Now they are much more understanding of children and parents they see in public.

As with you, I have typical children, so no one who knows our family can blame our parenting style. :-)

Jon G said...


Thanks for the comment, especially being someone who TRULY understands. As a parent, I can still only GUESS what you (and my son, and all the other beautiful ones out there) go through.

I am happy that you lend credit to what I've said, and hope everything else on my blog rings true.

If you ever have the chance to kick around here and read my posts, please feel free to confirm or deny anything I have ever said here. Though I try not to climb on a soapbox, this blog, my booklet and our local support and awareness group exist because I want people --- outsiders mainly --- to understand, appreciate and welcome those who live with autism.

Welcome to SCDD and hope to see you back soon.

Jon G said...


As a believer myself, I think that phrase we're talking about actually FRUSTRATES me. It implies that God has subjected us to something --- but it also diminishes the more important point: what our autistic loved ones are going through.

What's their simplistic, cliché comment implying that God gave them?

To be fair, I think when people are met with an uncomfortable topic, they reach for something familiar. Sometimes that's a simple phrase they have overheard.

Rachel said...

Hi Corrie,

My husband often uses a variation of your phrase, and I don't really mind when he says it. He lives with me, knows my struggles, and says it in order to remind me of my resilience and my ability to perceive the larger love at the core of existence. I have a hard time when other people say it, though, because they don't always understand my experience and, as Jon implies, the phrase becomes a kind of platitude that minimizes rather than comforts.

Corrie Howe said...

I saw your picture on Faces of Autism. I'm glad to meet you. I believe my son Jonathan is just below Jon's son Nolan on the same site. I can't imagine what it is like for you and more than I can truly understand what it is like for my son. I'm glad that you've recently been diagnosed, I found just having a name for what we were observing really helped us feel justified...not feeling like we were crazy, as everyone was making us feel. :-)

Deanna Schrayer said...

Great responses Jon, both PC and not-so-PC. I can't tell you the number of people who've suggested diets and "natural remedies" for Jimmy's autism, even from people who have no children, much less children with disabilities. I've learned, (through trial and error of course), the best response to this is "What we're doing now works just fine." Sarcastic enough to shut the mouth, but intelligent enough not to sound too snippy.
The worst I've heard though was from Jimmy's principal. As you know we didn't have a diagnosis for Jimmy until he was well into his elementary years. After he finally was diagnosed and we were trying to understand what in the world an IEP was, she suggested, (not sure that's the appropriate word), that we not " make the mistake of other parents and use Jimmy's autism as an excuse for not being able to sit still in class." Yes, I blew up, but from then on she at least appeared to be trying to work with us. I've heard the same sort of stories from other parents of children who attended that school, so I knew it wasn't just me.
This is one of the most difficult aspects of living with autism in our family, isn't it? Thanks for a great post!

Deanna Schrayer said...

by the way, I tweeted this post. Hope it brings around the people who need to hear it most.

Jon G said...


I have to agree that, though a label doesn't really HELP per se (unless it's needed in order to get funding or insurance coverage, unfortunately), it can add a small layer of comfort. It can give a "see, I told you so" answer to naysayers and, as you put it, justify your crazy concerns.

Jon G said...


I'm finding that the need to justify (as Corrie had posted recently) seems to be a recurring theme. explain, don't explain. What's the right answer?

I know that some of these comments I posted are hand-picked for effect and entertainment, but there is a definite air of seriousness to them. We have enough of a battle every day, and our kids have enough of a battle every day, and folks like Rachel have enough of a battle every day just with the diagnosis, that we/they do NOT need the challenging confrontation and disbelief of outsiders.

Soldier On.

Jon G said...


Thanks for tweeting! I hadn't thought of that. Here's hoping!

Rachel said...

Corrie, so nice to meet you, and to see a photo of your beautiful son.

Having a diagnosis does make a tremendous difference, doesn't it? It seems impossible now, but before the diagnosis, I thought that everyone experienced life as I did. I just thought that they were more mature, unselfish, and resilient than I was, and could therefore do things, without complaining, that were terribly difficult for me.

What a huge relief to find out that I'm just wired differently! I'm neither crazy nor morally deficient. I just have an extremely interesting neurology. Accepting the way I was made is so much better than continuing to metaphorically bang my head against the wall and try desperately to be someone I'm not.

I hope that all the kids diagnosed early will be able to avoid that trap. I've burned far too much energy attempting to be like everyone else. Time to make up for lost time and just be myself!

Jon G said...


Just like the title of this blog: after the "label" (read: diagnosis) your days were surely different, but you were no less the same "child" (a big child, granted)!

What a weight that must have been lifted!

Corrie Howe said...

Great Post. Great discussion. Thank you everyone!

Rachel said...

Jon, yes, that's exactly right. When I asked my husband whether my diagnosis was freaking him out, he said, "No, why should it? You're still the same person you were before. Now we just know why some things are difficult for you. Your life is starting to make sense."

Did I mention that I love that man. ;-)

Jon G said...


Thanks for being a part of the discussion and bringing some great comments to the party.

Jon G said...


How awesome you have such a wonderful, open-minded, smart and loving husband.

Fairlington Blade said...


I also found your blog through Faces of Autism (so cute!). I consider myself lucky in that either I haven't heard many insensitive comment or (more likely) I'm sufficiently oblivious that I didn't realize it was an insensitive comment.

A friend of mine, who has a child on the spectrum who is in her twenties, commented that you should talk about your child who has disabilities. Some folks are hopeless, but there are others who can be reached.

I probably dodge a little at times, but I bring up that my son is in a wonderful program (all cheers to federal involvement in education) and although he has significant delays, he is wonderful, loving, and has made remarkable progress.

So, I'm willing to deal with the glassbowls (Carolyn Hax's term) if I make a few thoughtful individuals, well, think.


Paul Lane (also known as the Fairlington Blade)

Jon G said...


Thanks for visiting and commenting. And it's fortunate that you have not encountered negative comments. But it is painfully true that some people are oblivious.

My wife talks about his autism less than I do, but I don't think either choice is wrong.

It's nice to read you support for your child. I'm sure he'll do well!

Ashley's Mom said...

Love it, Jon!

Jon G said...

Thanks Ashley! This was one of my more popular posts! I'm glad you added another comment.

All the best to you.


Jon G said...

(I mean...Ashley's Mom) ;-)