Thursday, March 1, 2012

50 things you SHOULD NOT say to autism parents.


I wrote this post for two different people: autism parents, and the people we interact with. 

If you are an autism parent I hope you find community in this post.  I hope you laugh and cry knowing other autism parents hear these awful comments too. 

If you are not an autism parent, I hope this list gives you an idea of a few things you should not say to us.  I know most of you are not trying to be mean or hurtful with these comments.  Now, you need to know that we do welcome talking about autism.  In fact, we LOVE getting on our soap box and talking about autism.  Just be careful what you say.  We pour our blood, sweat and tears into autism.  So it can be a sensitive topic for us.  Because I know most of you want to be sensitive to our feelings I've also created a list of the 50 things you should say to autism parents.


Without further ado, a random order list of 50 things you should not say to autism parents.  Yes, I promise, autism parents have heard all of these comments, probably many times over.
  1. Autism is over diagnosed.
  2. I've seen Rainman and Temple Grandin, I totally get it.
  3. He must be really sad to run away so much.
  4. Stop being so sensitive, they were only joking when they called her a (insert nasty hurtful name here).
  5. He just needs to apply himself more.
  6. My kid does that too.
  7. Why do you let him carry that ______ around everywhere?
  8. I can't believe you let your child run around naked.
  9. You need to make her eat more variety.  It's not that hard.
  10. At least she can _____. (Talk, walk, smile, etc.)
  11. It must be so nice to get special treatment everywhere.
  12. Are you sure he has autism?  He seems fine to me.
  13. God knew you could handle this.
  14. How dare your child not look at me when I'm talking to them!
  15. He can talk, he just doesn't want to.
  16. If you knew she might meltdown why did you come here?
  17. Teaching him is like training a dog.  How hard could it be?
  18. She can't have autism; she looked me in the eye.
  19. I have a miracle cure for autism to tell you about.
  20. Disneyland would be much easier for you if you left him home with your mother.
  21. It's good your baby is a girl so she won't have autism like her brothers. 
  22. There is nothing wrong with her.  She is just quirky.
  23. You just need to force her to sit through it, she'll learn.
  24. I gave up on him and stopped trying.
  25. Have you tried what Jenny McCarthy did?
  26. I can't believe she isn't potty trained already.
  27. Why aren't they doing ______ yet?  Have you been working with them?
  28. Isn't she too old for a binkie?
  29. He is so spoiled.
  30. He can't have autism, he is so smart.
  31. If you had enough faith in god, his autism would go away.
  32. She's a girl, she can't have autism.
  33. Did you know ______ causes autism? (Pollution, food, shots, microwaves, inbreeding, mean moms, drug addicted moms, power plants, loud talking, too much TV, etc.)
  34. Kids usually grow out of autism.
  35. They don't need therapy because you’re such a good therapist.
  36. Good thing you’re done having kids.  You wouldn't want another one with autism.
  37. How dare you drug your child!
  38. But you’re so normal, how do you have a child with autism?
  39. Does the mean she is really good at ______? (Math, art, music, etc.)
  40. He just needs to be medicated.
  41. He doesn't have autism, he has discipline problems.
  42. Could you please take your son out? He's disturbing everyone.
  43. The way your house is in lock down is absurd.
  44. You should mortgage your home to try ________ therapy. 
  45. They are in a normal classroom?  Is that ok?
  46. You made up the autism diagnosis for attention.
  47. Make her come give me a hug.
  48. I can't believe you won't come to this crazy, busy, loud, sensory overload event.  They would like it I promise.
  49. Everyone has some form of autism.
  50. Can't you just control him?
Special thanks to my facebook friends who helped me come up with this list: Stephanie R., Amanda P., Andrea C., Calleen K., Mary R., Melissa J., Debbie J., Heidi S., Melyssa S., Tanya H., Jessica C., Liz S., Margie W., Dani L., Ashley B., Rochelle O., Monica S., Andrea G., Katrena L., and Karla P..  Your input was crucial!

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163 comments:

  1. I love this! I have reposted it everywhere!!

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  2. You forgot, "Have you seen Autism: The Musical?"

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  3. Love the list! Obviously, I'm behind on my blogs, but I will be sharing this with everyone =)

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  4. Love, love, LOVE!!! This may sound terrible, but I'm so glad to see so many things on there that I've been told, and I'm glad it's not just me who gets and hates comments like this.

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  5. Love this! One of my favorites is "He can't eat the same foods all the time, give him something different and when he gets hungry enough he'll eat it."

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    1. Yeah strangely enough this is my favourite, and another one is "he's too big to sleep with you, just put him on his own room an lock the door, he'll get sick of banging his head and screaming soon enough"

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    2. My Mom told me "You don't spank her enough."

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    3. heard "when's he's hungry enough he'll eat" so many times and even from professionals that should know better!! my favourites are " oh you vaccinated him that's why he's got autism" or the old classic that is still heard " you spoil him, he wouldn't be so naughty if you were a better parent" or various versions of....

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    4. I heard "Have you tried spanking him?", "I know another kids who's a psychopath...", "How can you not have control over your child?" And my personal favorite, "It's not potty training the child, it's potty training the parent not to be lazy."

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    6. My 2 grandchildren (boy 6, girl 4)were diagnosed at one of the earliest yrs. We all were devastated, but not prepared to deal with all that has happened. You learn as you go, & being the grandma to my daughter`s kids, I`ve said a few "wrong" things & am continueing to become enlightened. Saying it is hard is an understatement!!!!!! I have been there when I thought how hard it must be to spend 24 /7 with not 1, but 2. I live in a different state, so I can`t stay long lenghts of time, but am so mad at the gov. agencies, that put them on lists for treatement, then you wait years to be seen or evaluated. Thankfully my daughter is resourceful enough to call insessantly, reporting and recording everyone she contacted, you could easily lose your mind. People, in general, assume that it`s your fault, how dumb they choose to be? Please lighten up on caregivers/ parents,/ grandparents, & get educated on autism, everyone is different, & every child deserves to be respected.
      Sincerely,
      A loving grandmother

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  6. This is incredible. I agree, seeing this lets me know I am not the only one that is questioned about if this is a "real diagnosis." I can not believe all of the statements I have heard.

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  7. First and Foremost..You are a Parent of a Child!!!!The Child is always first....same with the Parent...It is not the Autism Parent or the Autistic Child.....Please correct...

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    1. Yours should be added to the list. We're the parents and can describe our situation as we see it!

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    2. Thank you for your reading my blog and for your comment.

      I have addressed your concern in a blog post here: http://www.autism-island.com/2012/04/autism-parent-vs-parent-of-child-with.html

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    3. I have a nephew who suffers with autism and I also appreciate this post... it is correct. A child who suffers with something that hinders them is no less a human being and needs love and compassion and good parenting as much as any other. Good parents love their children regardless of circumstances. Maybe a few more people will begin to understand things like this. Thank you.

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    4. THANK YOU!!! That was the very first thing I noticed! :-)

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    5. Don't expect everyone to conform and feel the same way you do about how something is labeled. I have no problem saying I am an Autism parent. Though I do say my son has autism but, that is just because it is normally how the conversation goes because he is high functioning. I wouldn't be offended if someone said he is autistic, because he is.

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    6. Im an Autism Mom and proud of it! Just because the child are not infront doesnt mean we think less of our child.

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    7. I am a Dad with a son who has Autism. The word Autism doesn't bother me near as much as the as statements like, " What's wrong with him is he a Retard?" I love my son more than life itself. He is not a retard. He is my HERO!

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  8. Brilliant - I have pinched to let my friends understand!!

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  9. I love the one about, isn't he potty trained yet? I keep hearing that one about my 3 yr old.

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    1. I too about my 10 1/2 yr old he was but regressed again we are working on it again and will hopefully one day have it down

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    2. My son has aspergers and while in a positive behavior support (PBS) class from the end of 3rd grade all through 4th grade he had bathroom accidents. I tried telling his father, we are divorced, it was due to the teacher. No one believed me. It's so amazing that all threw last summer and this whole year in fifth he hasn't had one issue with bathroom accidents.

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    3. My son has spent most of his time away from other children, not having opportunities to interact with others his age to learn from them, and is used to basically having run of the house. Since we have been here, where everyone seems to work intently on teaching their children quiet & reverence from day one, it has been a bit embarrassing to see how everyone else looks at us. The fact that he is the size of a 5-6yr old even though he is barely 3, does not help others' opinions. When his Nursery teacher asked me one day if he had been diagnosed as autistic already, I didn't know what to say. He has not been diagnosed, and I don't know what to even think. He has no problem displaying emotions or handling physical or eye contact. I don't understand what to be concerned about. His speech has been improving greatly since he has spent more time around other children. He is not potty trained yet, although he keeps changing his mind as to whether he wants to be or not. Plenty of people tell me that it is not abnormal for a 3yr old to still be in diapers/pull-ups anyway. I just feel so confused. I don't know if I should be doing more... :-/

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  10. I may have to reblog this and will give you a big mention.

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    2. same here if ok... both.. the do and don't say... they really are brilliant..

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  11. What about this one: "They have autism? Oh I'm so sorry, it must be so hard for you, do you have any help?" I mean really, I LOVE them just the way they are! Cause, they're AU-SOME!

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  12. In relation to the pacifier: "He's how old? Why does he still drink from a bottle? Can't you just take it away?"

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  13. I ve just shared it on facebook <3

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    1. My daughter has 4 boys with autism and I never tell her "God knew you could handle this". When
      she is having a trying day with any one of the boys I tell her "God only gives special parents
      special children".AND EACH AND EVERY ONE OF THEM ARE SO SPECIAL TO ME

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    2. LOL! I hope you don't have children because then you must not be "special" enough for god to have given you a "special" child. What crap! We are dealt what we are dealt we can either buck up and take responsibility for our child/ren or give up. Most don't give up.

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    3. Seriously? Your poor daughter. The autism isn't hard enough without a ridiculous answer like that?

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    4. I understand you were trying to help your daughter but when my mom said that to me it just made me angry. I only have one child with autsim and somedays I feel like I am drowning. All I want is help, someone who understands.

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  14. You forgot, "You said your child regressed dramatically after his MMR, but everyone knows that the MMR doesn't cause autism because that doctor was a fraud."

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    1. What is MMR?

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    2. MMR is a vaccine.. Mumps, measles, Rubella (my spelling is bad)

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  15. Wow, i can't believe that some people ACTUALLY say those things!! I have a few friends that have autistic kids, and we talk about it often, i am sooo glad i haven't said any of those things to them!
    But one thing you didn't mention was the "if you didn't tell me, i wouldn't have known", all of my friends absolutely hate that one! Good job on the article!

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    1. why is "if you didn't tell me, I wouldn't have known" offensive? I'm asking sincerely, no snark.

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    2. I find it offensive because autism is a largely invisible disability and society acts upon what it sees.
      So it's like, I can't see it so how can it really be there?
      Also, to me, it's everso slightly patronising.

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    3. To me it depends on who say it and when. Mom said it to me in the very start of the dignoses and i were fine with it but when people that hardly know us say that it royaly ..... me off.

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    4. I don't understand how anyone could mind hearing that. All the therapies and treatments - isn't that what we're striving for? For our children to have better eye contact, more appropriate language, more reciprocal conversation - and not be disabled by autism? (Autism is only "invisible" if you're passing someone on the street - it's very quickly visible when interaction begins.)

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    5. My son is 15 with mild AUTISM and PDD-NOS , I am overjoyed when people say they would not know he has.... That is our goal. So he can function as close to "normal" as we can get him.
      Great job on the list. But need to add " thank God thats not my child.". Have heard that too many times.

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    6. its not always visable when you interact with them, my son and daughter are both autistic 4 and 3, and i get "they dont look autistic" i hate that with a passion, or i get " well maybe it was something you did when you were pregnant with them" my response is " are you serious? " people always say " oh i feel bad for you" excuse me but my children are not a mistake they are a blessing and they are amazing children, they teach me more and more each day. when someone says they dont see it, that is what bugs, just cuz you cant see it in the 5 mins your around my kids doesnt mean they dont have it, i got 2nd and 3rd opinions from docs and the end was the same everytime. i am their advocate and will be for ever , yes they are loud and out of control sometimes, yes they still have binkies and my 3yr old still drinks from a bottle, yes my house is on lock down(its for their own saftey), yes it get a bit messy and they are always running around in diapers or undies (its a sensory thing for them),yes they flap their hands and dont look you in the eye and they have tantrums (its bc they cant communitacte like typical functioning kids) if you dont like it then dont come to my house and if you cant stand my kids then take a flyin leap..they are mine and i love everything about them, even on the hardest of days , my kids till have everything they need and every possible therapy i can get them in. if you think im a bad mother then how about walking in my shoes for just an hour! dont judge autistic parents or kids..if your going to say something snarky keep it to your self until you can fully understand!!!!

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  16. I've heard all of these before from neighbors, teachers , and family, really anyone I interact with that doesn't really understand the full extent of the everyday struggles parents of autistic children , it is 24/365 and non-stop and then to add two more children without autistic traits is a bittersweet expeirence i would like everyone i know to have this post , lord knows its hard long road but i try to be optimistic in it all and keep good spirits my 10 1/2 year old son with autism is very smart in his own way as is everybody and shouldn't have fear of someone judging him for playing on the porch in his pull up Mommy loves you Corey man xoxo

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  17. My childs pedi hes had for maybe 2 yrs has said a few of these to us even though a neurological dr diagnosed him and now has taken him off meds since his specialest is retired and we are looking for a new one

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    1. The things above I have heard over and over and then some....... The most hurtful was my pediatrician . He informed me in front of my son when I gave him the Diagnosis papers .." There is no such thing as aspergers it's just what they call it when they can't figure out what is wrong. He's just screwed up in the head , always has been , always will be, get used to it." I sent my son into the hall and said many things to him privately that I would not repeat here then found a new doctor

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    2. Good for you Babydoll! Parents let their doctors get away with saying things that should NEVER be said, especially with the child right there. Aspergers is just as real as any other autism diagnosis and doctors need to understand that.

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    3. GOOD ON YA LASS! That's the best thing I've read so far and will most likely remain the best... I'm autistic by the way

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  18. One I did not see ,but, hear all too often, ALL HE NEEDS IS A GOOD SPANKING! I even had my parents overhear a woman at Christmas time say "HE NEEDS TO BE SHOT TO PUT US OUT OF OUR MISERY haa haa" .My parents had a fit along with a salesperson who had a child with autism while I cried.....people can be cruel....

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    1. people can be so very cruel but i think for the people who are lucky enough to have children at all weather they have adhd ocd autism or not you can still have the special moments with them and enjoy your time with them no matter what vile mean people say my children dont have any such obsticals but i have set other obsticles for them such as try to be kind to all what ever shape size colour and one day i hope they will understand the struggles some people have to face each day it is all paying off they have become very close friends with a little boy with autism he is such a wonderfull little man and such a joy to be around and my 3 year old and just turned 7 year all accept him for who he is it makes me smile to see them play so nice together and put there differances aside so to all you lovely people on her be who you are and enjoy your children xxxxxxx

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  19. I love "When will he be cured?" or "What's his problem?"

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  21. What about "isn't that something she'll outgrow or just a phase?" and I second the "All she needs is a good spanking"... that's the one that I hear from the 70+ crowd (including my children's great-grandmother!). But my daughter has sensory issues and the spanking feels like a little tickle to her, so even if I did believing in spanking, what would that do???

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  22. Wow! That about sums it up. Just Wow!

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  23. thanks for this list. It is comforting to know that it is quite annoying to other parents of ASD children to hear 'my child does that, too' from parents of children without ASD. I am not trying to win martyr points or negate someone else's struggles.

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  24. I can so relate to this... My son lives with ASD -- he eats less than a dozen foods and I am beyond trying to justify it to concerned family and friends and even, professionals (like a nutrionist I consulted who scolded me with "Be the parent") who disapprove of the fact I don't force him to diversify the few foods he eats.

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    1. You know... if peanut butter and bananas are on that list... I have heard doctors say that they contain pretty much all the nutrients required to live well, anyway! Just like a friend of mine's child would not eat anything but pb&j for a very long time, but a nutritionist told them that as long as they ate both the pb AND j halves, they would be fine!

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  25. Love this list and have heard them all, but the one that got me the most was when my own parents asked if my son was really autistic (having been diagnosed by a team of professionals) or if it is really just that I don't know how to handle him!! That was right up there with his school who said he wasn't autistic, his behaviours are because I am a single parent. He is now home schooled and absolutely fantastic!

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  26. *sigh*
    Pretty sure I've heard all of them... with four on the spectrum!

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    1. i know i may have said a few maybe not worded in the exact matter as above but the same meaning it was not my intention too be so tacky we all need to be more concise of our wording to each other we are all humans with feelings! so lets start treating each other nice! words can be harmful & hurtful.

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  27. Thanx 4 sharing. I have been told 20 of the 50. A "once upon a time" friend of mine even called my son a loner!!!. I can hear her in my thoughts right now.... "there's Vince, all alone again, he never wants to play with anyone....he's such a loner!" That hurts!

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    1. I have seen my son ignore all the children around him & just lay on his belly playing with a truck or something... but I also have seen him go out of his way to TRY & hug other kids or get them to play, and most kids now-a-days seem to be skittish even about other KIDS, so they just run away from him or push him away... I can't blame him for realizing that a certain group of kids is not going to want to play & if people see that as wrong on his or my part, they just need to open their eyes & learn to understand what's going on in front of them!

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  28. Thus us a TERRIFIC article! We dealt with TS/OCD rather than ASD.... Some symptoms similar, some not at all, but the point is soooo valid. Heard at least 1/4 of these at some point or another. Wish TS/OCD had had this kind of support15- 25 yrs ago. You guys keep it up, educate, support and never stop doing and loving and sharing. Ignorance may be bliss, but it's not necessarily a good thing. I will be sharing!!

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  29. how about "i am afraid to have another baby because it may have autism" when ur kid has it and there's don't!

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    1. Yep I've totally had that too... crazy isn't it!

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  30. This is a great article. while I would not dreamed of saying most of these things I must admit to having said once or twice that my child with ADHD does that too". I did not realize it was offensive and will try to gaurd my words more carefully. thank you for such a great list.

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    1. Same here. I have a child with physical disabilities and I hear these with a twist or two, but I didn't know it was offensive to say that my child does that too. Good to know.

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    2. If your child has a disability too I doubt it is offensive to who you are talking to. It is annoying when someone with an atypical kid says "my child does that too" about something like lining things up, or spinning non stop, or echolalia. The reason that its frustrating is basically because the person saying it is invalidating the struggle or the problem by making light of it and dismissing the problem as something "normal" kids do. So if your child struggles with it too I don't see it as an issue. Hope that makes sense.

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    3. This comment has been removed by a blog administrator.

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    4. Everyone is entitled to their opinion but the fact that you are assuming we are being hypersensitive and assuming people are saying things intentionally is just plain, for a lack of a better word, dumb. Would you say the same thing to a list of "50 things you should not ask a soldier or 50 things you should not say to a cancer patient"? This is a place for us to relate to one another and share our concerns. If that bothers you, kick Rocks.

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    5. This is a place for us to relate to each other. I shouldn't have let that comment through because I want this to be a safe place for us. We get enough of those types of comments out in the real world. We should not get them while on a blog relating to each others struggles.

      I promise to moderate comments better moving forward.

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    6. Thanks christine, for removing it, however it was proving the point to of what NOT to say to a bunch of people on a blog about Autism!!!

      I can not tell you just how many times I've been called "hypersensitive".. really? is it hypersensitive to hear the ignorant "stuff" (so wanted to say another word!) constantly coming out of people's mouths, almost on a daily basis and not react??? I would LOVE to see how the mother of the child that called my son "retard" ("oh, he was just teasing"!!! Really??) would react if her son was called it???? hypersensitive? No. More dealing with ignorance on a daily basis gets tiring...

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    7. There was a post today talking more about comparisons and why they are frustrating. Check it out.

      http://www.autism-island.com/2012/04/should-not-comparisons-not-welcome.html

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    8. Anyone interested in understanding why comparisons are frustrating should go look at this post. It explains it further.

      http://www.autism-island.com/2012/04/should-not-comparisons-not-welcome.html

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  31. My personal cringe-inducers are: "Have you tried breathing exercises?" (for that crippling anxiety, for rages, and for hours-long meltdowns). "Its just a tantrum, you just have to ignore it" AAAAAAHHH! Thanks so much for sharing!

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    1. I am not sure if my son is autistic or not, but I know that those types of comments have bothered me as well... Especially from people who have seen how well "ignoring" it works. I have been with my son sunrise to sunset almost every day of his life, and still people want to talk to me like I don't KNOW my own kid! He is slowly getting better about some of his tantrums... I think... but I remember how he would throw a screaming fit about something & I have TRIED to ignore it from the start, like so many people & even psychologists have suggested over the years, but he would simply continue until he got to a point that he would make himself sick, and I promise that it did not get better after he puked everywhere!

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  32. Wow! people really say this stuff? I guess I can't put anything past people. I do not have an autistic child, but would NEVER even think of saying any of these things to any parents! just crazy.

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  33. Shared on Facebook. I particularly like the one about binkies. My 4 1/2 yr old son still needs his. One time my husband had to stop and buy him new ones while we and the boys were out and about...saleslady looked at us with total disdain and said "Maybe you should think about getting him OFF the pacifier instead of buying him more." My husband responded, "You raise your kid and I'll raise mine." She got mad. I wanted to report her to management, but he reminded me "We are autism parents...we have to have thick skins."
    *sigh* no truer words have ever been spoken....

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    1. This one made me cry. I've never looked at myself this way . Your husband is right word for word.

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  34. I do not have autistic children. Most of the things on this list sound horrible. Some of the things I think are people trying to make conversation and simply understand your world better. How about creating another list of things you'd prefer to hear people say? Some people such as myself are often afraid to say anything at all about kids who they know have autism for fear of saying something that might be taken the wrong way. Thank you.

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    1. I agree completely. My husband's brother has a child on the spectrum and it seems there is nothing we can say that they don't take offense to. For the record, I have never and would never say anything on this list. We are lost and don't communicate with them at all anymore for fear of saying the wrong thing.

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    2. Don't bring it up or us an inquisitive approach; "How is it going?", "Is there something I can do to help?", "I know I don't know much about X situation- tell me about it".

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    3. Thank you for your comment. I have finally gotten around to 50 things you SHOULD say to autism parents. Here's the link: http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html

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    4. I actually read the "Things to Say" before the "Things NOT to Say" and I agree with your perspective. I have 2 sons with Autism and 3 daughters. We have been dealing with this a long time-one is an adult now- and I have heard all of those comments. One thing that always puzzles me is the comments-"You must be a Special family ...." indicating we are being rewarded for something. Or the comment-"You must have done.... indicating we are being punished for something. It just is what it is. I honestly believe Autism is the hardest thing to happen to our family and the BEST thing to happen to our family. I think it is interesting. I have met so many wonderful parents of children with Autism who are doing the best for their children day by day. It is awesome when a neighbor brings over a soda or a plate of cookies and shows they care. They don't really need to say anything at all...

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  35. These are great! I think I've heard most of these...oh and..."No we don't carry harnesses for children or animals". Wheninquiring about the availibilty of a child harness at a kids r us for my extremely speedy, constantly darting off son.

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    1. I believe my son picked out one with a monkey from WalMart after running away from grandma just about gave her a heart attack... ;-)

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  36. 1. What do you mean she cannot talk, she just said hi to me

    I have a hard time explaining to my mother in law that communicating is different than talking.

    2. He/she will grow out of it when they are older, so and so's kid has autism and they are just fine,(but then goes on to give examples on how that young college age student or young adult with autism is not really doing well and not coping so well and still needs help).

    3. Oh that quirky trait is hereditary, so and so on my side is just like that.

    4. He/she will grow out of it as if they really do not have autism, they will be normal when they are older.

    I know I am not alone but I am tired of family and friends not taking autism and what we are dealing with serious, they allow family to be rude inconsiderate and there is no fight for our sons. They think that because they are older and have grown kids that they know what it is like, not only that but I have bone cancer and not one family member or friend has helped us or even offered to help, telling my husband call if you need anything is not really helping in any way, they may see our sons under 30 hours a year yet they are the expert and give my husband all the credit and treat me like I do nothing, but if they read something or there friend says something they treat it as bible. When in reality having 3 kids (all boys), 2 with autism it is me that is with the kids 100% of the time. All of our kids are under 5 and not in school yet. When are my inlaws and other family going to get it?

    Shellie Tompkins

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    1. Shellie,

      I was heart-broken when I read your post. There are lots of things going on, but one suggestion I would make is to call and say you do need something. A lot of us say "if you need anything, call" but don't really know what you need. I have a friend who just went through cancer, and after we had a heart to heart, she would call and say "I need this" or "I need that" and I was thrilled to help. Some of us need specifics, we really don't know what to do to help.

      Delete

    2. Just read and educate yourself on Autism. Ask the parents to share with you some the things that their child likes and dont like so that you can babysit to give the parent(s) a break for a nice date night!

      Delete

  37. As a parent of 4 non autistic children, and having a best friend with an autistic child, I have to say that I cannot wait to hear the 50 things TO SAY....because this list is unhelpful in a positive way. I mean ok, fine, basicly you are saying "Keep yer yap shut." ok, I can DO that.....but what about when my friend is struggling with her child and she talks to me about it, WHAT am I supposed to SAY THEN?? It is incredibally frustrating to not be allowed to comfort her in some manner, because it is deemed offensive. If you want people to understand, HELP us understand. I don't deal with the issues that she/you deal with on a daily basis, so instead of snarking, offer some positive things that non-autistic moms can do to help. I listen, but sometimes that just doesn't feel like enough.

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    Replies

    1. Try to get her involved with an autism group in your area. She'll be better able to relate them on this topic. Not trying to "snark" at you but really you can't say anything that's going to comfort her in the way that you intend. It would always fall short despite your good intent. I don't talk to other non-ASD child moms about the trials of parenting a child with ASD because it isn't fair in a way. They can't empathise and besides...are you going to bring the "approved to say" list as a cheat sheet? Just be her friend enough to tell her when you are at a loss. I'm certain she knows you care.

      Delete

    2. BTW...CAN'T BELIEVE you get on an autism blog to take us to task for snarking. None of us wanted in
      on this club and don't feel superior to you because we are. We have typical kids, too. None of us wans t to be "handled" by our friends with stock answers from an approved list of phrases. We know you don't get it. Educate yourself and when you don't know what to say, say that.

      Delete

    3. Thank you for your comment... and I'm glad to say here it is: 50 things you SHOULD say to autism parents.

      http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html

      Delete

    4. I think this person is trying to be supportive to her best friend. Just because she doesn't have an ASD child doesn't mean she can't be there for the parent. She may not fully understand, but it sounds like she wants to. Clearly she came here looking for some sort of answers. Isn't this the sort of person to whom we want to provide awareness? I would appreciate her "baby steps" of support as a step in the right direction.

      Delete

  38. I am printing this out and keeping it on hand at all times. At the top of this blog page I am going to write " PLEASE THINK BEFORE YOU SPEAK, YOU NEVER KNOW WHAT IS GOING ON UNTIL AFTER YOU HAVE OFFENDED THE PARENTS AND ESPECIALLY MY CHILD"

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  39. My favorite is: "my friend's husband's cousin's nephew has autism and bags groceries now! He seems to really like it." The assumption that these children lack ambitions, dreams, and the ability to succeed at their chosen endeavor REALLY gets to me. Three well meaning but narrow minded people have said this to us. If my child chooses to bag groceries for a living that will be up to him, but strangers limiting him ticks me off. My son has a genius IQ. Kind of like Einstein!

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  40. I have heard a lot of these and many more others.

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  41. Love this, can relate to them all, and more, I have to say some of them made me laugh just because I have experienced ppl asking n saying them, the one that actually made me laugh out very loud when it happened was the Rainman one, when our lad was diagnosed ( we knew he was on the spectrum before it was confirmed ) anyway was telling the grandparents and my father-in-law as nice is he is, said, "so are we talking a sort of rain man situation" I just threw my head back all dramatic n LAUGHED a LOT, tx for writing this, I love it

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  42. I appreciate you providing a place for parents to "vent" what only others in their situation can understand. As a bystander, I appreciate hearing the raw frustration that many parents feel who are parenting in uncharted territory, since every child and situation is different. I am listening and hope to learn better communication techniques from all of you. I work with hundreds of kids and parents and many of the kids have been diagnosed with autism. I look forward to reading the "50 things TO say" post! Thank you.

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  43. I can't believe people even have the cheek to say these.

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  44. I love this! My will be 2 on April 28th and was diagnosed last week (April 3, 2012) I have already heard some of these things and it is very hurtful..

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    1. Wow... its sad you are hearing these things so soon. Take care of yourself for the next few months and concentrate on your little one. The first few months after the initial diagnosis are rough! Don't burn yourself out reading every article out there. Take your time, inevitably soon you will be an autism guru. Good luck to you!

      Delete

  45. A friend of mine pointed me in the direction of your blog. I read a few posts and got a little weepy. Silly, I know. But, you are very good at expressing things that I often think or feel but have trouble verbalizing. Thanks for being out there, being vulnerable, and being true to you. "No man is an islands, no man stands alone..." What a great support group!

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  46. Wow! This hits home! A little short tho... Top on my list is "He needs to/should just grow up."

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  47. http://you-leave-me-breadless.blogspot.com/2012/04/dont-say-it.html

    I just wrote about this the other day too. Why do people say such horrid things? I just don't get it

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  49. I have heard a few of these responses. I will be sharing. Thanks so much

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  50. I've heard maybe 2 of these things but for the most part nobody says anything out of the way to me because I will blow a gasket. I don't like my son feeling embarrassed and any adult making statements as ignorant and heartless as these will surely find themselves sipping out of a silly straw for the next 6 months.

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  51. When my son was little, he was having a meltdown during a trip to Ruby Falls. A teenage girl was making ugly comments to others saying HER trip was not enjoyable because of SOME children in our group. I tried to explain to her that my son was autistic and her mother popped up wanting to know what was going on. She told her mother that I said my son was autistic and she said very loudly, "Don't worry about her. She is just using autism as an excuse for bad parenting." I REALLY wanted to hit this woman but I kept my cool and just thought how that poor teenage girl will turn out with a parent like that!

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    Replies

    1. Un.Stinking.Believable. How can people be so ignorant? I know they don't want to be, but even though I never had children, I'd NEVER make such snap judgments--ESPECIALLY IN PUBLIC! I'm so sorry you had to endure this. I've said my share of critical comments under my breath, since not having children automatically makes me an expert in child-rearing, right? ;/ But now I pledge to think more compassionately and give the parents the benefit of the doubt. Thank you for sharing--you've just helped me grow up a little more and be a more thoughtful, less critical person. I appreciate that.

      Delete

  52. agree with other commenters my personal favourite is "he doesn't look like he has Autism". Can anyone tell me what he is supposed to look like - cause as far as we can tell our son looks completely like his own self and not like anyone else we know. But each year we have to fight the awareness fight with each and every new teacher / new friend / family member(s) - but it will be well worth it for us and those following close behind (and currently in the classroom - as yet undiagnosed). Am thankful also for those who have been on this journey ahead of us too - that we can empathise with and definately learn from

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  53. I always get.....oh well he doesn't look autistic? LOL REALLY??? hahahahah

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  54. Thank you for this. I've heard most of these. We lost our best friend as our son was labeled a bully.
    (Pre-diagnosis) The worst one I had was "That kid will always be a loser" by a son to his father who just smiled in response. Yes Heartless people are out there.

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  55. You must be very strong. That's why God knew you could handle him. I hate that one. God didn't give me an autistic child because I'm strong. He gave me a child and then His grace gets me through each day somehow.

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  56. Next can we see list of 50 things we SHOULD say to parents with autistic children?

    ReplyDelete
    Replies

    1. There is a link to that list in a message above.

      Delete

  57. My favorite... Similar, but just a little different from yours...
    If he's having a meltdown in the store, you should just leave and come back another time when he's more calm. (because, you know, I don't EVER need to shop again in this lifetime! Which is what would happen if I left every time he had a meltdown in a store!)

    Or, when he latches on to something and I buy it because he's throwing a fit and the self righteous customer behind me is mumbling loud enough for me to hear... If my kid was throwing a fit like that I would NOT give in, she just needs to learn to say no! That kid is a brat! She has no idea that this "fit" could carry on for DAYS and I just don't have it in me to deal with it right now because I'm mentally and emotionally exhausted.

    The worst one ever was when I moved into my neighborhood and the lady across the street came over to introduce herself and warned me against getting to know the lady next door to her because her son was autistic and she might expect me to help with her kid who was a total terror :( needless to say... The neighbor I was warned to avoid has become my best friend and I am so grateful to have her, and her son in my life :)

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  58. My favorite I get is when someone says hi to him and he doesn't look or respond to them they say "oh he isn't very friendly is he?"

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  59. How about, "I don't believe in the autism umbrella! My son has autism, and he shrieks and flaps his hands. They're just giving out the label to anyone." Or from the school psychologist, "He is willfully defiant and enjoys testing limits."

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  60. My favorite is the one about being naked. I have 2 boys with autism and my Logan strips as soon as he walks through the door. Most of the time he is completely naked before I even get in the house. After hearing about it and hearing about it, I was finally able to make people understand. I said: "have you ever worn clothes that are too tight? You can wear them and get through the day but you are uncomfortable and unhappy all day and all you can think about is getting home and getting them off. That's how Logan feels in any clothing no matter how big or soft so when he is in the privacy of his own home, shouldn't he be allowed to be comfortable?" It gives them something they can relate to and usually shuts them up.

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  61. I have heard almost all of these on the list at some time or other during the 14 years raising my autistic son. Some definitely have bothered me, but others not so much. I try not to be too sensitive about what people say because I know they do not understand and often do not know what to say. I know my friends and family mean well. The one I heard that really bothered me came from a school counselor who said all my sons problems were because he was being raised by a single parent, and that I should get remarried soon or he might end up gay too! I should have sued the school system over that one. It infuriated me.It was during the time I was trying to get my sons IEP started for services, and they wanted to blame me and kept saying they did not believe it was autism because kids with that are so much worse.They seemed so confused when I said that is why it is called a spectrum disorder.Just no sensitivity at all. No understanding of the disorder, and they did not want to provide him with extra services. The principle acted like I was making a mistake when I told him I needed to fill out the no spanking form, so they could not spank my child at school. He was sent to the principal so many times for walking out of the gym during P.E. because they would let the kids get loud and gyms echo and my son could not take the noise and they knew that. He is home schooled now!

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  62. What a great list...I've wanted to blog about the insensitive things well-meaning(?) folks have said to me, but am afraid they'd actually see my blog and recognize themselves. Maybe that's not such a bad idea!

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  63. I have heard alot of these and some of them from his father. It is so great to know that that there are poeple out there who do understand and try to help me and my son as much as they can. My son is high functioning so he seems normal and goes to school like any other child. Because of that most people expect him to act as a normal child would. Never mind the fact that he is developmentally slow in some areas. The school would not give us an IEP because he didn't "qualify" for any special services, the best they were willing to give us was a 504 plan. It is so frustrating. The emotional rollercoaster is insane some days but with help and support from our family and friends we make it through. I am concerned about our upcoming move which will require switching schools. I am hoping that his next school will be more sensitive to his needs.

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  64. I am a mother and have a 14 year old Autistic son and don't know how many times I have heard these statements or worse said in front of my son he is diagnosed with Autism-NOS among other disabilities and when he asks why people say those words i tell him they are just mean people who don't understand how special and wonderful he is.

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  65. Great post! Would love to see a list too of the things parents of austic children WOULD like to hear, that would be encouraging, uplifting and helpful to them.

    ReplyDelete
    Replies

    1. Here it is... a list of 50 things you SHOULD SAY to autism parents.

      http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html

      Delete

  66. I have 2 adult childen with different levels of autism.I think Ive heard it all.People being, rude, stupid, cruel, ignorant and some trying to be nice, but,end up putting their foot in their mouths...Many of our children,(one of
    mine does),have "potty" problems.I actually had a "friend" tell me she would
    tie him up like a dog,and when he had an accident etc, she would grab him by
    the scruff of the neck,and rub his nose in it by force till he "learned
    better".What kind of people are these, that would even suggest doing something like that?! Does it really surprise me? ....sadly no!

    ReplyDelete

  67. I am a teacher and unfortunately I hear this comment and it makes my blood boil: "Autism is the new ADHD." Really? They are not even close!!!! I wish I could come up with something to say other than 'No, I disagree, I think that the doctors, etc. have gotten much better at diagnosing Autism.' I think it falls on deaf ears, especially since some of the people that make the comments are people that teach special Education!!!

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  68. I've been on Autism Island for over 5 years now, and my most honest reaction to this piece was laughter. Seriously, I didn't feel particularly sad or angry, I was just amused. I literally LOLd at #s 3, 8, 43, and 48-- probably because those ring so true to my situation. I know this is a very serious subject, but I just really appreciate the "gallows humor" behind it. Great blog, and I love the new look!

    ReplyDelete
    Replies

    1. I'm glad you like this and it made you laugh... laughter is the best medicine. Glad you like the blog and new look :) Thanks for reading!

      Delete

  69. For me, the worst was, and still is from my son's father:

    He doesnt have Aspergers, you just neglect him.

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  70. My child was just diagnosed with autism, but he has been diagnosed with Tyoe 1 diabetes for 4 yrs and epilepsy for 3 yrs. My favorite that I have heard with each diagnosis is: God knew you could handle it. That may be true but doesn't change how hard getting each diagnosis has been. A hug would have been better.

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  71. I've heard a few of these already. I really hate hearing , "what is wrong with him?"
    There is nothing wrong with my child!

    ReplyDelete
    Replies

    1. My stock reply to that one is, "He's a misunderstood genius."
      1. They have no reply. 2. It's true. ;)

      Delete

  72. I have a long list of "potty training tips", that could complete another 10 or 20 comments. "just put her on the potty every day and she'll go!" Seriously, people, do you think I WANT to be changing diapers on a 6 year old??

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  73. I've heard many of these, and a few not on this list, but do you know the one comment/attitude that really ticks me off? Unfortunately, it's the one I hear most often, and it comes from other parents with kids on the spectrum: "Oh, your child doesn't have REAL autism. My child has REAL autism."
    Oh, really?! Argh. :/

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  74. My favorite among those mentione above from the school one on one aide when I voiced concern that my son was suicidal because of stress of school......"he will never do it, he hates pain", "just put him on the bus and send him to school." "no different than sending a naughty kid to bootcamp." and then of course came "Jenny McCarthy cured her son"

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  75. As an adult with Aspergers and female I'd like to add the following:

    * Stop being so sensitive, it was only a joke! (variation of 4)
    * She must have severe PMS to act like that
    * Can't you tell a story without going on in random directions?
    * While working in a call center: "You need to use more empathy." Or my fave "You're too professional. Customers like it when you're conversational"
    * Chill out, I was just trying to give you a hug!
    * But you're so social! (after 30+ yrs I think I've picked up a few social skills)
    * You are such a child! What 30 yr old throws a temper tantrum?

    I've heard several variation of many of these directed at me, or overheard. One being "so are you like that Bones chick?" due to my fascination with possible cannibalism in Neanderthals. It's ridiculous how insensitive people can be at times. My favorite has to be #22 and 46. If it wasn't for the fact that 3 of my friends have autistic kids I'm sure I would hear a lot more of #48.

    And if one more person calls me Sheldon I may go off the deep end

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    Replies

    1. Thank you for your list and I had to giggle and feel bad for you about the Sheldon remark. I might just have to make another list just to add that one in. How obnoxious!

      Delete

  76. I don't know if it is on here, but mine is....people saying they are sorry that my child is on the Autism spectrum. Like she has cancer or something. There faces go from smile to saddness after I tell them. Drives me nuts. I don't know why but it does!!!

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  77. I still remember the day I was at fazoli's with both my kids my very asperger-like boy was probably 6 or 7 and his neuro-typical sister was 4 years younger, and my son had his cars I found a table a bit away from everyone and sat them both down got their drinks and silverware and then went to get the food it was just me I was doing it all myself. My son was at the table with his cars which he loves (now 2-3 years later I think I know every fact there is to know about a Lamborghini) My son was running the car fast across the table and crashing them into each other pretty much in his own little car world. When I brought the food back he started to eat and we ate and there was a lady and her daughter who was probably close to my sons age and they had finished eating and were heading out.. as she headed for the door Josh had apparently dropped a car she put her foot on it and kicked it to our table very deliberately I said to my son Josh you dropped a car please pick it up. The lady turned around and said to me "He did NOT drop it he threw it?" I didn't really say anything pretty much ignored me but part of me wish I had said I am sorry I didn't hear you did you say that you had a child with asperger's too and you know what is like to take him to a restaurant all by yourself? I know Josh didn't intentionally throw the car I imagine that he was playing with them kind of hard (he is very propriceptive seeking). I think that was the night I decided that I would never judge another person's parenting skills because I do not know the specifics of their child.

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  78. I would also add "That kid is just....bad." Sadly I have heard so many people talk about kids that way and it breaks my heart.

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  79. Hi, I'm a mom of twins, would like to know if you mind if I translate this into portuguese?
    (and "Things to say about...")?
    Thanks in advance and best wishes

    ReplyDelete
    Replies

    1. Yep for sure. Please just link back to my original post. :) Thanks!
      -Christine

      Delete

  81. He looks so normal. Thank you, that means the accomodations I have made so that we can be at this event are working! (bringing foods he likes, ear protection, ipad, etc)

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  82. Maybe the things people say are offensive or hurtful because we put meanings on them that weren't intended. Many people's intentions are good - they are wanting to take away our stress or help in some way but they aren't educated about the problem. So instead of being offended or annoyed let's thank them for their concern & then ask them if they would like to learn more about autism ( or any other problem we have) & learn why their suggestion wouldn't work.

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    1. Agreed, nice comment.

      Delete

    2. While it's nice and all to inform them politely, no one should be scolding anyone for being offended by hurtful words. It's a perfectly justifiable reaction. Offensive words offend people and those offended have the right to say so. If anyone should be scolded on their behavior, it's those that have made hurtful comments without thinking. Not the autistic individual, or their families.

      Delete

  83. Thank you! I really needed this list. Especially after a day like today. I have 2 daughters, 3 and 2 that are both Autistic. Also a 6 month old son and I get told, "Autism is more likely in boys. You have your hands full. Are you having more kids?"

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  84. You forgot 'now that we have a diagnosis, how do we discipline her'..... courtesy my daughters elementary school principle, during our first ARD meeting following her diagnosis. Needless to say, we switched schools.

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  85. My father asked me "will he ever be normal?" REALLY?

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  86. How about: "ASPERGERS" sounds like Ass burgers, funny.
    Yeah right.

    ReplyDelete

  87. I'm sad that I relate to over 3/4's of these :(

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  88. I work for a Children's Museum and we are attempting to educate our self's and our staff on appropriate ways to talk about autism without offending anyone. This article and 50 things you SHOULD say to autism parents have been a spectacular help. Thank you.

    ReplyDelete

  89. My son is eleven now and has been non-verbal since the age of two. He barely began talking, before his speech was taken. But he's very vocal (humming, squealing, grunting, etc.) He's also very stimmy and OCD with a lot of ritualistic behaviors. I've heard many of those along with, "What's wrong with him?" I always have to bite my tongue to resist the urge to say, "He doesn't like you. That's what's 'wrong' with him."
    I took him grocery shopping once several years ago and he swiped one of those cardboard sales signs they post over their shelves when my back was turned. He's extremely fast and efficient. When he wants something, he has the ability to snatch something right out from under your nose without you even noticing. This elderly woman felt it necessary to inform me (when I turned and saw him nibbling on the edge of the sign) that he was "hungry and I should give him a cookie, or something." O_o
    I told her that, no, he wasn't hungry, he has autism and does things like this. I took the sign and put it back. She literally had the gall to look like she didn't believe me! I didn't realize this complete stranger apparently knew my kid better than I did. Grrr...

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  90. Omg!! I always thought I was wrong to get upset when I would hear these things, especially from my own parents. This really helped me understand that I was not wrong to get upset and I am not alone. Thank you so much!!!

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  91. U forgot its ur fault he acts liike that or were u getting high or drinking while preagant with ur soni had one doctor tell me that if i beat my son then hed learn they cant always help what they do

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  92. great points i have a friend whos son has autism i didnt know about it or even what that is the kid came to play with my son one day he was very normal but got upset all of a sudden ...i kept telling him to calm down and stop shouting he wouldnt...when his mom picked him up i told her he got a bit upset and angry...i didnt know why ...later on that day she told me he has autism ..and i really didnt know what that was so i asked her whats that?? she told me..but really i have had this kid over twice aweek for the past 4 years and never thought he had anything at all he is 8 now.he is very smart in school he speaks good he plays nicely.but now i feel i dont know what to do or what to say is that very wrong???and what should i do ??

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  93. Loved this list! I could definitely add to it as I am a mother of a 21 year old daughter with Asperger's as well as a Special Education teacher.....I feel like I've heard it all. My recent favorite from my mother was, "You know....I don't need this!" Here's a thought....it wasn't DONE to YOU. Wow! Thanks for letting me know I am not alone in this. :)

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  94. I recently had a school "team member" at a school where my son is only in school 3 hours a day ask me, "and what are you doing to take care of yourself?" My response was basically I just raise hell. I then went on to explain that my son cracks me up every day. He is so funny and creative and such a pain in the ass. And then I felt a little disgusted that I even had to explain why I not only love my son, but enjoy him- way more than the ad nauseum "team members".

    Another one I hate is "it must be so hard advocating for your child". Or how about a special education teacher who post notes emails or notes "thanks for all you do!"

    Another one I've recently come to hate- since I've been talking to advocates from my state who have then called to ream out my son's school system- is from my local school system when caught in nonsense and lies- "I admire you for advocating for your child".

    Also, how about advocates or state folks who laugh at you when you describe your child's school situation? How about those who say "oh my god!" Or immediately go to "do you think they don't know any better?"

    Number one annoying statement is being urged/ basically directed to "train and educate others".

    f*ck that.

    thanks for this list. It was good to vent.

    ReplyDelete

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