Sunday, April 8, 2012

50 things you SHOULD say to autism parents.



Wow!  50 things you should not say to autism parents went viral this week getting over 10,000 views in 48 hours.  Thank you to everyone who read it and shared it! 

I received many comments wondering when I was going to post 50 things you should say to autism parents like I promised.  Here is one comment that I think sums up how many people feel “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.” – Anonymous

Thank you for asking.  The fact that you ask shows you are heads and tails above many of the people we talk to about autism on a day to day basis.  Autism parents really do want to talk about our children and about autism, most of us live to be on our autism soap box and raise awareness.  But it can be a touchy subject for us too.  So before I go into the list let me give you four basic rules of thumb to remember when talking to autism parents:


1 – Remember, if you’ve met one person with autism – you’ve met ONE person with autism
2 – Do not assume anything; you’ll be wrong 99% of the time.
3 – Remember that most of the time we are looking for a listening ear, not someone to solve our problems.
4 – Please ask us questions about autism, we want to talk about it and spread autism awareness.


So here it is, in random order, 50 things you should say to autism parents.

  1. How can I help?
  2. That must be really difficult.
  3. I think she is beautiful.
  4. How can I help stop bullying?
  5. Please don’t feel embarrassed, we understand.
  6. I know you are working around her routine, special diet, sensory needs, therapy, etc.  so what works for you?
  7. You’re a great parent.
  8. Have I ever hurt your feelings talking about autism?  I'm sorry.  Please help me understand.
  9. "Hi _________ (child's name) how are you?" - Talk to the person with autism, not around them.
  10. No need to apologize, I understand.
  11. Can I help you with your other kids while you help your son? 
  12. Can you teach me some ways to work with her?
  13. Wow, I can see why that might be a small thing for the typical kid, but for your son that is huge.  Congrats!
  14. I admire how much work you've done with him.
  15. Follow your mother’s intuition.
  16. Can I join your Autism Speaks walk team?
  17. He is so smart.
  18. You know your child better than anyone, including: doctors, therapist, teachers, aides, etc.
  19. What’s the best way for my child to play with yours?  I'm sure they will be great friends once they get to know each other.
  20. How should I explain autism to my kids?
  21. Let me be a shoulder to cry on.  You’re a good mom, especially on your hardest days!
  22. Don't say anything.  Sometimes a hug is all we need.
  23. How can I help your daughter feel more comfortable?
  24. She is uniquely wonderful!
  25. I understand parenting a child with autism can be completely different from parenting the typical child.
  26. She has made so much progress.
  27. His IEP is really working.  I'm glad I've been sticking to it.
  28. I know it is hard for you to find a sitter, so how about we come over to your house after bedtime for some adult time.
  29. I don’t care if your kid turns the lights on and off a billion times, is obsessed with our washing machine, or ________ (insert random behavior here), he is welcome here any day.
  30. Who cares if she has a pacifier/blanket/stuffed animal/etc.  It makes her feel more comfortable.  That's all that matters.
  31. Hey, I think clothes are annoying too.
  32. We know he is a good boy, this is an overwhelming situation.
  33. Let's get your son a buddy/aide so he can participate too.
  34. "Normal" is overrated.
  35. I’m glad your family goes out in public!  You need to live your life to the fullest too.
  36. Tell me about autism.
  37. Does your son have any diet restrictions?
  38. What therapy and treatments have worked for your son?
  39. I was thinking of you.  I don't know much about autism and all you go through, but I know a good diet coke (or glass of wine) helps! - Here, enjoy!
  40. How well does the school accommodate your daughter?
  41. It's not your fault.
  42. I think __________ (insert child’s obsession here) is pretty cool too.
  43. Do you need a babysitter?  Because I'd love to help.
  44. Let me hold that/watch them for you while you run after him.
  45. I know that every child with autism is different, tell me about yours.
  46. I’ve heard kids with autism are the hardest to potty train.
  47. What should I do to prepare for your visit?  Is there anything I should put away or details I should know?
  48. I know you just want someone to talk to.  So I will listen without trying to solve your problems. 
  49. Really?  Insurance companies don’t cover autism?  I’m going to write my legislator tonight to change that!
  50. I want to talk to you about autism and I want to make sure I'm sensitive to your feelings.  If I say anything that upsets you please let me know so I can understand your perspective.
Again, 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., Mirella P., Shelley H., Katrena L.. Thank you everyone, couldn't have done it without you! (Everyone who helped with 50 things you should not say to autism parents is also included in this since that list helped create this one.)  



46 comments:

  1. Great post - just great! Even better than the other one (50 things NOT to say...)! Love it. Would also love to "borrow" some of those phrases for my own blog (http://familyandautism.com) if I may - of course with a clear reference to this post. Would that be alright?

    ReplyDelete
    Replies
    1. Loved them all excep 35.....of course they go out in public, if someone ever said that to me, I would be extremely upset

      Delete
    2. I read both. Very helpful,however, can the parents of children without autism, really "understand" what parents of children with autism are feeling? Did you mean, "understand" the situation? Im sorry. I just dont think that those parents who dont have autistic children really understand.

      Delete
  2. Thank you so much for this list. I have to say that I have come across many blogs/sites/support groups, etc for autism but your site is the only one I keep coming back to!

    ReplyDelete
    Replies
    1. Thank you for the amazing compliment! I'm glad you like it!

      Delete
  3. All I can say is tears, tears and more tears! I looooove it!

    ReplyDelete
  4. Love this!!! Thank you, Christine!

    ReplyDelete
  5. beautiful Christine....great job

    ReplyDelete
  6. We need more posts like this one right here. I can't imagine hearing most of these from anyone that isn't an autism parent. this should be on a t shirt

    ReplyDelete
  7. I LOVE this list....I have two grandchildren on the spectrum,& I wish I'd had this list when I first heard about their diagnoses....thank you!

    ReplyDelete
  8. Christine,

    Thank you, and your Facebook collaborators, so much for creating this list! What a wonderful and heartfelt summary. We will Tweet this and post about it on our blog at
    TheSocialExpress.com

    ReplyDelete
  9. This list is amazing. All four of my kids are on the spectrum, my oldest being 23. I wish I'd had this list years ago. Thank you. I like Annemarie's idea, can we have a t-shirt?

    ReplyDelete
  10. As an autism parent I can say I have run across this so much it is so true.

    ReplyDelete
  11. Thank you. I WILL SAVE list for reference. God bless your work!!

    ReplyDelete
  12. I plan on sharing on Facebook and my blog as well. THANK YOU SO much for your hard work & dedication!

    ReplyDelete
  13. THANK YOU!!! You have me tearing up, I feel so much more confident now about approaching this touchy subject. The list of things NOT to say was an eye-opener, but this one is so very very helpful! I want to help and know more, but I never know what to say-- now I do! Thank you!!!!!

    ReplyDelete
  14. Thank you for writing this. I don't know how many times people have seen me jogging with one child under my arm to catch the other one. Exhaustion and in need of an ear to borrow are 2 almost daily encounters. I'm sure lack of sleep could be added to everyone's list too (I could take him out for an hour so you can take a nap). Thank you again.

    ReplyDelete
  15. This is both creative and informative. A great thing for those that may feel apprehension around the parent of a child with autism. Well done! :)

    ReplyDelete
  16. I love the list ! So many people out there don't understand autism and it's so good to get the word out ! Thank you.

    ReplyDelete
  17. This is good, I have a son that they say doesn't have Autism, but his brother does and I see so many characteristics in him and his brother that I think they are wrong. Let me just say that I should follow this list while talking to myself in the mirror. I'm a mom of a child with Autism and I'm not perfect.

    ReplyDelete
    Replies
    1. You're a LOVING mom who knows her children better than anyone else, and deserves the support, respect, and admiration that such difficult circumstances warrant. I'll keep you in my prayers, for strength and confidence as a mother who fiercely loves her children as they are and has to contend with so much more than "merely" (a misnomer, I know) raising a child.

      Delete
  18. As a mother of typical kids and a friend of parents with autistic kids, this is great. Here a couple of my thoughts though:

    1. How can I help? (ONLY if you REALLY mean it and CAN help ;-)
    5. Please don’t feel embarrassed, we completely understand. (the word completely should NOT be in that sentence....I and most people understand but NOT completely, and THAT is ok too ;-)

    Great list indeed!!!

    ReplyDelete
    Replies
    1. Great comment. Thank you! You are right about both, especially #5. I'm fixing it now. :)

      Delete
  19. WOW! I know a family with an autistic child, and I've never known how to respond, so I pretend to ignore the elephant in the middle of the room, so to speak. This list is SO helpful--thank you SO much! I want to be sensitive without seeming overbearing or controlling. This list is going in my files!

    ReplyDelete
  20. #35 and #46 rub me a little wrong, but otherwise, a pretty great list. I also really liked the four basic rules at the beginning. Thanks!

    ReplyDelete
    Replies
    1. This comment has been removed by a blog administrator.

      Delete
  21. This list made me cry. Literally, cry. My cousin is autistic and although we love her for who she is, sometimes it's hard to really understand what to say or how to go about offering help. My cousin is about 15 now, and I remember sitting down with my family when she was diagnosed. We were heartbroken then, but things have become a little easier. Thank you for both lists. They are very helpful.

    ReplyDelete
  22. I worked with autistic children in the 80s; it was heart wrenching. We've come so far ... from blaming parents to intervention. I love this list and 41-50 are my favorites! Let's all be vocal about this issue and push for prevention, cures and most of all effective interventions. My experience was children with autism, and adults too, have a LOT to teach the world ... and we must listen.

    ReplyDelete
  23. It is sad to say but mostly the only people IO hear any of this from is other autism moms out there. I don't really even hear it from family because every one wants to deny anything is going on with my son and now my daughter who is being tested as well. Lost several good friends who pulled away once my son was diagnosed because they didn't know what to say or do I found out.

    ReplyDelete
  24. I have to say that lately was I thinking I was missing your blogging and wondering since I don't have Facebook anymore what you are up too? This blog is AWESOME! I saw you posting some Autism articles on Pinterest, and was pleasantly surprised to find that you were the author when I went to read them. I will definitely be repinning things you post. I don't know a lot about Autism because I haven't had the chance to interact with it a lot, but, these articles are great (and eye opening, people really say such mean things?!) and I think they will help me in any future interactions. I also really liked the article for photographers because I know Autism affects a lot of people and if I was hired to be a photographer I would want to make sure their family had a great experience. What a cool fundraiser she is doing too. I have been trying to think of something I could get involved with or a fundraiser I could do, and maybe I could do something along the same lines. Anyway, I am glad to have found a blog you write again!

    ReplyDelete
  25. Is there a way for me to share this post on my FB wall? Thank you!

    ReplyDelete
  26. Thank you for this list! The third general rule is going to be hard for me, but I'll try! (Trouble-shooting seems to be one of my love languages... yikes!)

    I'm curious, though, whether dads of autistic kids tend to feel that way too? Or whether there tends to be more lee-way for conversations about problem-solving with dads. I guess a good general rule would be to ask the individual, and let the individual with the "problem" in question take the lead? (Including deciding whether there even is a "problem" to talk about.)

    ReplyDelete
  27. Had a little cry.

    ReplyDelete
  28. Wonderful. This brought tears to my eyes. Thank you.

    ReplyDelete
  29. Exceptional - you have a gift for these lists. I'm not sure if you are aware but #16 is one that might not be agreed on by many autism families. http://www.regardingcaroline.com/autismmonth

    thanks again for your wonderful list!

    ReplyDelete
    Replies
    1. Yes I know there are people that don't like Autism Speaks. I can't vouch for everything they do or say. What I do know is that they work closely with us in Utah to get autism insurance coverage legislation passed. We need it so badly here, my daughter needs it, and it is the cause I am the most passionate about. So although they aren't perfect I appreciate them as an organization.

      Thank you for your kind words and comment. I know there are many families who feel as you do and I respect that.

      Delete
    2. I am very glad to hear they are helpful to you! You are an excellent blogger - keep 'em coming!

      Delete
    3. THANK YOU I AM IN TEARS most dont understand autism kids who have It or how they behave I hate it when someone assumes my child is a brat or just misbehaving In church the other day he took off his shirt playing with the strings hold on the shirt sleeve and someone said " In that was my kid I beat his A*%$$ for tearing his shirt and acting like That in church why cant thy see him for the loving child he is not for what is wrong with him I want to scream at them " he cant help it DO not judge him "

      Delete
    4. Isn't that sad? Church is where you should be most accepted!

      Delete
  30. Thanks for this post! My nephew was just diagnosed with autism. This is so helpful.

    ReplyDelete
  31. I'm a mother with a child we believe is on the spectrum, not diagnosed but has had early intervention for about 10 months, and this is a great list. Just reading it made me feel like I wasnt alone. Its nice to see that other people understand, and have been through what I am going through. Thank you for this...now its time to dry my eyes :)

    ReplyDelete
  32. I was doing fine reading those until I got to 16.

    Why do you endorse Autism Speaks only?

    ReplyDelete
  33. I am an autism parent and also the president of the Autism Speaks U chapter at my college and I love this list. Would it be okay for me to borrow it and your should not say lists for some of our promotional materials? I will credit to you of course but I want to ask before hand. Thank you.

    ReplyDelete
    Replies
    1. Sounds great. Keep on spreading awareness! Thanks for what you do in your community!

      Delete