Many Hats Mommy

Finding Grace & Choosing Gratitude

What to Say and What NOT to Say to a Family Dealing with Autism

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Welcome to World Autism Awareness Day. Hopefully I had enough clean laundry to be wearing blue today! And, hopefully I’ll survive this morning’s Special Needs Story Time! Since I’m over at the library, I’m honored to bring you my witty Twitter friend the Domestic Goddess! She has two sons on the autism spectrum and a sassy sense of humor.

A lot of what she has to say today applies to all special needs families. I have to say that for the most part, I’ve been pretty fortunate in this area so far. And, most times people don’t mean to come across as insensitive. Consider this an education in what your words can sound like to someone who’s had a really long day dealing with meltdowns and other issues. Domestic Goddess is going to help you know what to say and not to say in those times when you’re just not sure what to say.

Autism families have burdens like every other family. Most of the time we just want to be normal for a few seconds, even though normal is boring to us (but most likely we are never, EVER bored.). People mean well, they really do.  Maybe we’re just being overly-sensitive because we’re constantly on high alert. We’re not trying to be ungrateful, really. Sometimes people just say the wrong thing, y’all. And if I had a dollar for every time someone said the following? I’d be a rich woman indeed and I wouldn’t be scrounging for money for therapy. Ahem. Anyways, without further ado, let’s get the Ten Things We Wish You Wouldn’t Say out of the way, shall we?

  1. G-d doesn’t give you more than you can handle. Look, I understand the intent. I know you are just trying to make me feel better. The thing is, if I am given something that I can handle, why do I need Wellbutrin? Just sayin’.
  2. Your kids are so lucky to have you for a Mommy! Really? It wasn’t random you know. They ended up with me for a reason alright, it’s called genetics. And if you don’t understand what I’m talking about, there’s this great book on puberty I can read with you.
  3. I don’t know how you do it! You are so strong/amazing/such a good mom! No, I’m not. It may appear that way on the outside. I do this BECAUSE I FREAKING HAVE TO. I’m just doing what any parent should do. The alternative is…Foster care? Sending them off? No. Though I’ve been tempted. From time to time. Not that I’m admitting that (Oh, I just did).
  4. He’ll talk when he’s ready. Oh dear. This one strikes a real nerve. That kid is more than ready to communicate, my friends. In fact, he’s long overdue. Also, also? He NEEDS to be able to do it. He is beyond frustrated. HE IS READY. It just doesn’t come.
  5. He’ll eat better eventually or when he is hungry. This is a kid who will either not eat all day or eat nothing but rice crackers and apples for three days. He’s stubborn. Apple doesn’t fall far from the tree. And now he’s allergic to apples! WEEEEEE!!!!
  6. Can’t you just discipline him? HAHAHAHAHA!  Oh, that’s a good one!  HAHAHAHA!!! Oh! That’s funny!  Discipline!  It’s not like he goes to a BEHAVIORAL school or anything!  HAHAHAHA!!!
  7. He’s manipulating you. He’s just trying to get attention. Because a kid who can’t talk and pushes people away on a regular basis and doesn’t want to be around people hardly ever is looking for more attention. RIGHT-O!
  8. I’m so sorry! Sorry? Why? Did something bad happen? Oh, you mean about my kid! Why? He isn’t dying of some incurable disease and he’s quite happy, thankyouverymuch(and I should add, we’re just fine).
  9. What’s WRONG with Him? I cannot begin to tell you how much my jaw hurts from clenching my teeth when I hear this one. There is NOTHING wrong with my boy but I’m sure there’s PLENTY wrong with your lack of manners and you should be ashamed of asking me a question like that at your age. Sheesh. You’ve got a big mole on your nose, too. So there.
  10. Normal kids do that, too! Or, Oh my kid does that! No big deal! Really? Way to invalidate my feelings! And I highly doubt your child does it at this intensity and for this duration for this many days in a row. It also insinuates that my kid is not normal. And while I’m not claiming my kids are normal, C’mon! Trying to make it sound like my kids’ pants wetting in public/temper tantrums/eating food off the restaurant floor is NORMAL behavior is just…well, not normal. Also? It’s a big deal for us.
  11. YOU ARE SPOILING HIM. I lied. There are ELEVEN. Because this kid goes to Eleven, see. And he can’t be spoiled, that would entail overindulging him and since it’s impossible to give a kid too much of something he doesn’t want, he can’t possible spoiled. The only thing he gets overindulged in is LOVE. And we’re kinda all about freely giving that kind of stuff.

Now, What SHOULD you say to an Autism Family?  How about this:

  • What can I do to help?
  • Let me know if I can help.
  • Thanks for explaining it to me, it will help me understand.
  • I’m here for you.
  • I’m here to listen when you need it.
  • I know this is difficult for you.
  • You’re doing the best you can
  • You’re doing a great job.
  • I’m thinking of you/ I’m praying for you.
  • The heck with what other people think.
  • I can’t relate.
  • I don’t know what it’s like to be in your shoes but I understand it’s difficult.

Sometimes saying nothing is fine. A simple card, a dinner brought over, an offer for coffee or to take the kids is great! If you don’t know what to say, say nothing at all or say, “I don’t know what to say.” Or hey, a hug would be great!  Most people just want an offer of help. You don’t even need to do anything, just OFFER. After all, to raise a child with special needs takes TONS of people. Therapists, neighbors, friends, relatives…all are equally important. All have potential to change that child’s life. All of them can help, even if it’s a teeny-tiny thing. A simple action or a kind word go a LONG WAY. And that simple action is HUGE to us.

It tells us you love us and you care.

More About Me:
I am a Domestic Engineer, Total Babe and SAHM to two boys with autism, ADHD, OCD and a variety of other acronyms. I was a band geek in high school, live vicariously through computers and prefer dogs to people, which means I have STELLAR social skills.

Twitter: @thedgoddess
Facebook: The Domestic Goddess
Blog: http://thedgoddess.com

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99 thoughts on “What to Say and What NOT to Say to a Family Dealing with Autism

  1. Love this post! My favorite thing that people say is “He doesn’t look like he has Autism”… like he’s supposed to have it tattooed to his forehead or something…
    Thanks for sharing!

    • Thanks so much!

      I write it on my kids with sharpie. KIDDING!

    • Heather–when I was going through the “diagnosis process” w/Dr. J, I had a lot of “are you from outer space?” looks when I told them my concerns. Our family dr said, “He talks to me just fine.”

    • Heather, I really HATE that one!!!!! They look at me like “Really?” as if I would make something up like “Oh, my child has autism.” My own mother has a habit of saying , “Well, with all this stuff you say he has….” The other thing is when people assume that autism means cognitive delays and say “But he’s so smart”. Yes, it can be the case. But, my son is one of those children who will probably have an IEP (for special education) and be served by the gifted program at the same time.
      Thnaks ManyHatsMom for the opportunity to share with a group that cares!

  2. Love this! I think the replacement lines are so perfect! Thanks for letting the domestic goddess guest post, Jenny! Makes me feel better to know I’m so not alone in this one.

  3. Having a young adult son I’ve heard them all. Had to laugh at the “Can’t you discipline him?” comment. It reminds me of the time (okay, there were many of them) when Matthew decided he didn’t want to go in the store and threw himself on the ground in the parking lot at Target. Screaming and kicking his feet I was trying to drag him back up to standing when this old couple came up and asked me that question. At that moment I really wanted to just hand him over to them and let them have a go of it. Afterwards I wondered what they wanted me to do? Beat him? Yell louder? Oh to walk in the steps before giving advice.
    Stay strong! Mom’s are the best medicine for our children.

    • I have had many, many moments like that. I wonder if their mothers ever taught them manners. Sheesh.

    • Oh my, Teresa! I love your last sentence, “Moms are the best medicine for our children.” Sometimes it’s hard to stay strong, and that is a good way to look at it. Thanks for contributing!

      • Oh thank you. For many years I was intimidated by “specialists” especially those in the school setting. Finally, I thought I am as smart as they are (maybe smarter). I have as much education (maybe more). I am my son’s best advocate. Of course, it helped that I started bringing family and friends to sit on “my” side of the table. After all, it wasn’t a trial but a discussion. But I do know that often parents are berated but if not you then who? Who loves this child more than you? Who knows more about what works or what doesn’t work? Ah, but again I’m rambling. All to say, enjoyed your article :)

      • That is intimidating, isn’t it! Especially in the beginning, no matter what’s going on with your child, autism, cancer, diabetes, etc. Thank you for encouraging parents new to medical issues to know they can trust their gut! Glad you took time to comment, Teresa.

  4. Holy crud! I’ve heard all eleven of these more times than I can count. They all make my skin crawl. Nice job and nice Spinal Tap reference.

  5. My friend whose daughter has SMA, a form of muscular dystrophy, asked me to add her comment from Facebook. Thanks for sharing, Wendy!

    Never say “wow, I could never parent a kid like that” or something similar. Tell me “You’re in my thoughts” when I’m having a bad day or struggling. If you have to stare longer than 2 seconds, come over and ask questions, and don’t shush your kid when they are curious. Don’t say EVER that my kid is “lucky” to ride in a wheelchair. Say instead how great it is that equipment is made to help kids like mine.

  6. This is great. Especially the assumption that our kids can be “fixed with a whoopin”. I have shaken my head so many times it often feels like it might fall off.

  7. I heart this very much

  8. Thanks for the great article! My favorite is “Can’t you just discipline him?” (implying that your a pushover parent). Yes I can and I do but it take tons of ENERGY and you have to do it over and over again. We are not super human!

    Love the reference to Spinal Tap btw!

    Colleen

  9. You hit the nail right on the head there. There isn’t one statement you wrote than I haven’t heard more than enough times.

  10. Man you have covered each and every thought that has passed through my mind since I first suspected my son had Autism, fought with family and friends about my suspicion as I was fighting to get the damn diagnosis, and since he has had the diagnosis and friends, family, and a few strangers have come along with their “helpful” advice.

    At the end of the day no two children on the spectrum are alike (hence why it is a spectrum) and no two parents/caregivers have the same challenges, or attitude about the situation so even if you can empathize, you can’t really understand what we’re going through so don’t try. Just offer what you can to help without putting a value on our experience.

  11. When I get the look for a meltdown or I can feel somone about to say something I just say “excuse me, we are having an auntism momment.” It usually results in an aha moment or a sympathetic, guilt riden quick smile.

  12. Thank you so much for educating people about Autism. I have two nephews with Autism and they are loved beyond belief. Their mom’s are devoted to taking care of them and educating the public about Autism.

    Keep up the good work … your a Super Mom in my eyes.

    Blessings

  13. Great post. I don’t have autistic children but I have children that require pecial handling. I get these comments and I can’t begin to imagine how they hurt you. I think we speak before thinking too many times.

  14. I have heard all of these and more! I do think people mean well, and I think people say the wrong thing, in a lot of situations. I sure do. I try to be understanding.

    Just the other night, someone told me THE BEST thing you can tell someone dealing with autism. He said, “You have a really cool kid, and he’s awesome exactly the way he is. I can’t even imagine him being a typical 7-year-old.” I beamed. And this was from a GUY! A guy, telling me something touchy-feely about my kid. Love it.

  15. Pingback: Being Aware | Don't Mind the Mess

  16. My biggest issue is now my younger son, who is 6 and not on the spectrum, thinks he can throw fits and “melt down” to get what he wants because he sees his older brother (10) doing it. Anyone have these issues? Advice? Help!!!

    • Marie, We have this problem, too. My Dr. J Aspie is 5 and my NT (aka neurotypical/normal) 3 year old has picked up these behaviors. I hope someone with more experience can leave us some advice!

    • HA! In our case the OLDER one learned it from teh younger one. I started telling him that while I don’t condone the younger’s behavior, he was working hard on it and the older one knew better. I expected more from him. He eventually got it. Oh, and it required tons of extra attention for a while because I realized he was melting down because he saw his brother get results from it. So I stopped giving in to the results, if you catch my drift!

  17. Shared that on my FB page!

  18. LOVE this post! love all on the list and Nigel said it perfectly..but this one goes to 11..so true, spot on reference! Henry would go days just drinking apple juice if we let him..luckily ne of the few things he’s not allergic to..Thanks for the great post

  19. I’m a special education teacher, and may I just say that as I was reading your post I was almost yelling “YES!!!” at every single thing you wrote. It absolutely kills me the way people act around children (or anyone) with autism or any special need. They are people first. Thank you for spreading the proper word and giving some people, I hope, a reality check.

  20. We have a “cognitive delay” diagnosis on the verge of a mild ASD diagnosis (more fun to come, I’m sure!) and my personal favorite was when people (relatives) would ask, nearly every day, “Is he talking yet? Is he talking yet? Is he talking yet?” as though some radical change was going to happen overnight and I was just (doh!) going to forget to mention that my kid finally started talking. Like I also had something going on with me that would cause sudden and profound amnesia about what happened with my kid in the last 24 hours since I talked to that person. Ugh.

    How about waiting for me to mention it? How about saying to me, “I’ll bet you’ll call me the second he starts talking and I’m not going to harp about it because it won’t make it happen any faster” Or saying, “I know this is hard for you…what ELSE could we talk about that would take your mind off it?”

    I know the interest in what’s happening seems caring, but at some point it feels like you’re being smothered or blamed or treated like an idiot.

    This post though? Dead on, perfect in every single possible way. Like you read my mind.

  21. Awesome list!! Spot on!

    And perfect for other special needs kids as well.

    I actually had a comment on my blog today from a long-time reader asking if I had tried spanking my son. I know she meant well, but really? Last I heard spanking didn’t help autism, RAD or bipolar disorder. Oy…

  22. I am not a mom of a child with autism but I was a nanny to a boy with autism. {However, I do NOT claim to understand what a parent goes through on a 24/7 bases}

    I remember running into other people around town, even a former mom I used to work for, who knew that I worked with a child with autism, and I was asked frequently “Are you sure there is something wrong with him? He doesn’t look or act autistic.”

    I wanted to scream when I was asked that! Cause really, their 5 minute assesment of the child is sooo much better then what parents and doctors and therapists have seen. I can’t even imagine what a parent would feel when asked these questions.

    Great post! Is there anything as a blogger that I can do to help? {Since I can’t offer in person help}

    • Wow, Tara, thank you for your kind offer! You are welcome to link to this post if you want, or just add your own two cents on your blog for Autism Awareness Month. :) I have to say, reading your comment made me think that sometimes even doctors say stupid stuff (don’t tell my boys I just said that!). I remember last year the neurologist asked me of my high-functioning son who could read 3-letter words, “Does he know his colors?” YES HE KNOWS HIS COLORS!

      Anyway, as I get off my soapbox, thank you for your input and for stopping by. I’m sure you are making a difference!

    • Hi! Thanks so much! Link to it as much as you want!

  23. “My son has autism and HE doesn’t do THAT!” Right in front of my son and his entire class. Wonderful.

  24. Trying to encapsulate my thoughts in a few words is hard. Awesome thoughts and that you actually posted them. I have two boys at different ends of the spectrum, my husband and mum are my greatest support, but I laugh more with other mums of ASD kids, we appreciate, revel and enjoy that which sets our kids apart. The parents of the “normal” kids I know always give the happy news that ‘he doesn’t look autistic’ or ‘you can’t tell he is autistic’ or my personal fav ‘all kids do that, it’s completely normal’. What the? Neither of my kids are autistic, they are boys who have a disorder that is known as autism. I love my boys, I am a mum, I am a person, I feel hurt and pain but I also am filled with the joy of having two boys in my life who have a disorder known as autism. Thankyou for posting your thoughts reading these posts give me the strength to be me.

  25. I am the mom of two adult men on the spectrum. Your list of 11 brings back not so fond memories. What I get now from other mothers of spectrum adults is the comment: Are you sure they are on the spectrum? I now get ostracized from the support groups I used to be a part of. My 2 went and are graduating from college this June.

    • Pat, thanks for stopping by! I am really sorry your groups are pushing you away now. Congratulations to YOU and your sons for their accomplishments! Feel free to stop by and add your insights any time! I could definitely use tips from someone who’s been there before.

    • So let me get this straight, they MAKE PROGRESS and your kids aren’t autistic enough? Whiskey, Tango, Foxtrot! Folks, we’re in this together!

  26. Two others:

    #12: Any sentence beginning with, “Have you tried … ?”

    #13: Telling me – or telling someone else, in my hearing – how creepy I am.

    ‘m not actually ASD, I suffer crippling social phobia, which presents very similarly, and was often presumed/treated as autistic growing up. Actually heard #13 from a checkout chick this afternoon. It does not help.

  27. Great share! I got a lot of generalized comments like “my kid does that and he is not autistic.” Seriously wanted to say back, “you don’t know your kid is autistic b/c he was not diagnosed, that does not mean it is not autistic!” URGH, my tongue hurt from those comments.
    And, (compliments of my own mother), he is so smart how come he is not learning his manners? You should teach him. After diagnosis: “Do you realize that you are giving him a lot more attention since he was diagnosed? It is like he is a toddler again.” YES, we know, we are going back to the stages of development that he did not learn and teaching the little steps missed…remember “you should teach him” (does she have alzheimers?)
    I even get phone calls from a sister two states away to tell me what I am doing wrong. ~ yeah, family!
    Of course the best part is that everything family says I am doing wrong, the professionals say I am doing write. Thankfully!
    BTW- We homeschool and have had great reduction in stress and anxiety. Incase anyone is on that cliff wondering if they should leap… it is liberating! The bungy cord will pull you back once in a while after a long ride.

    • Thanks for sharing, Mom of 4! I think a lot of people get more “flack” from their families and close friends, unfortunately. I often read that autism parents get more support from their online around-the-world autism friends than those that live within fifteen minutes.

    • Funny, we thought we’d homeschool and totally don’t regret sending to public. Of course, we have had an awesome experience so far with that. But, homeschooling is always keep it in our back pocket! LOL!

  28. Thank you for this! I relate so well. And even before my son’s official Asperger’s dx last month, I would always say he “goes to eleven”. Since we’re just starting to tell family and friends, we’re hearing way too many of these. And because he speaks and isn’t displaying “classic” autism characteristics, I find myself in the bizarre position of trying to convince non-believing mother in law and friends that haven’t spent more than a few days once a year with my child. So frustrating. Thanks for giving me a smile this morning and the feeling I am not so alone.

    • Camalama, Yes, I hear you. I got the same odd looks when I was in the beginning stages w/Dr. J….hang in there! I think the Domestic Goddess did a fabulous job with her list!

  29. This post just made my freaking day. Seriously. My little guy was just diagnosed with Autism last week but has struggled his whole life (all of two years) with other special needs. People of NT children really don’t get it. #10 is the one on your list that strikes the biggest chord with me. I always feel invalidated and stupid when other people are trying to make me feel better by comparing their child to mine. Thanks again for a rockin’ post!

  30. My favorite is “Are you sure he’s REALLY autistic?” because he… “doesnt look autistic” and because he does talk .. or are you sure he’s autistic? he’s so smart… yes I am aware he is smart and yes we are fortunate that he’s verbal..(though please remind me of that the next time he decides to fixate on a phrase and continually repeat it ad nauseum for days…)

  31. I LOVE this!! I had my son at the grocery store one day with me and he was asking for a drink. Ok not so much asking as was repeating the word soda, over and over and over and over… You get my drift. Anyways, the store is totally used to him and great with him, treating him as they would most kids. THe man, if you can call him that, in front of me couldn’t leave us alone. He whips around at us and yells to my son, “I hear you”. I lose it on him and basically tell him my son is autistic and really can’t help his repetitive behavior. In which he replies, I guess all kids are autistic then. I don’t remember much after that from all the yelling and hand gestures I was making. But needless to say the store actually asked him to leave and he was apparently yelling back at me.

    I guess my point is people just don’t a. get it or b. think enough to just leave us be sometimes. We are families just like they are trying to live our lives as best we can for our children.

    Oh and just for a FYI, the entire store was on my side. Everyone still remembers us and always makes it a point to come say hi and interact with my son. So, I’m not banned and thats good:)

    • Glad you liked the post, Danielle. Sorry you had to deal with that. It’s nice to see the relationships you have built with the folks at the store! Thanks for visiting.

      Sent from my phone. I apologize for any typos.

  32. Our oldest has Asperger’s and anxiety disorder. Unfortunately, we got a form of #7 from his teacher. When our child’s anxiety grows, he’ll start talking non-stop and laughing. He can’t control it. I realize that, from the perspective of someone who doesn’t know his diagnoses, it can look like he’s purposefully misbehaving. Pre-diagnosis, we even wondered if that was the case. However, since his teacher knows his diagnosis and we’ve told her about these being symptoms of anxiety, you’d think she’d realize it.

    Nope.

    Instead, she’s told us on more than one occasion about how our son is doing this stuff “on purpose” and how he’s intentionally trying to make her upset. It seems that no matter how often we inform her, she’s locked into the “he’s a bad kid” mindset and refuses to budge. I can only hope that his teacher next year knows how to treat a child with autism and anxiety.

  33. I love this post. Now does anybody have any advice to give when people don’t understand you don’t have time for them? My sister doesn’t understand why I cant just up and visit her every time she needs me, that I don’t understand her (recovering alcoholic) and that she totally understands what I’m going through (admits she has never even looked up autism) and that me saying I’m using my son being autistic as an excuse to not spend time with her. Any advice other than kick her to the curb, which is looking really tempting about now?

  34. My son has only recently been diagnosed, and whilst we wait to find out exactly how we can help him – I’m happy to read Blogs of real people, dealing and coping with similar struggles everyday.
    At almost 4, my son has got me receiving lots of those comments, but also lots of understanding too – so I’m very lucky. I think the most encouraging is the ‘I can relate’, and in this case I certainly do.
    I’m lucky that my son is highly affectionate, often asking for kisses and cuddles – I believe we’ll always have a very special bond. He’s teaching me so much every day x

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