Thursday, February 9, 2012

Things To Say To & Ways To Help An Autism Parent... :-)








(originally written & published on February 9, 2012)





I wrote a post yesterday called "10 Polite Things People Say To Autism Parents That Can Be Annoying / Frustrating..." which got a TON of feedback.  Many autism parents added their own stories of things that people say that irritate them. 

However, the stuff I wrote about was stuff that on it's own seem pretty tame & polite.  And as I said in yesterday's post...

People are just trying to be polite and show interest in your kid and have something nice to say.  Let me say straight away that I don't blame them for saying any of these.  These are just 10 things that when you hear ALL the time get to be a bit frustrating... the same way the movie stars get exhausted when they have to answer the same questions over and over when they are on a press junket...  :)

Many of the things that other autism parents commented about don't fall under the "polite but annoying when you hear it all the time" category.  Many of the things you posted fall under the "out & out rude / mean / ignorant" category.  And to me there is a HUGE difference. 

As I've said in a blog post last week (called "Where Are All These Mean People"), we rarely, if ever, come across people who are mean or rude on purpose or even by accident.

Yesterday's post was meant to be a slightly humorous way to show how even polite things when you hear them constantly can become a wee bit irritating. 

And some non-autism parents pointed out that we asd parents can be hard to please. Many of my non-autism parent readers wanted to know in all honesty... 

--Would  you feel better when people just do not say anything? If not, what would you like to hear?


--What would you like people to say to you? What are the encouraging words that you want to hear?

And several readers wrote back with some ideas like...

--How about whenever you need a sitter call me lol!
--I would love it if people would just ask regular questions like "how is school going", "is he getting along better with his brother (because they fight)?" regular questions that do not surround his disability.

And so that made me try to think about the types of things I would want to get asked... or appropriate ways to bring up sensitive topics that probably won't irritate me. :)  And I planned to sit down and write a follow-up blog post all about this.

But you know what?  I'm not the first person to write / blog about the things NOT to say to an asd parent.  And I'm not the first person to write / blog about the things TO say to an asd parent.

I did a google search on "things to say to an autism parent" and I found some AMAZING articles that say it way better than I ever could.  So I will pull out some of my fav's and add links to the original articles. 

I encourage you to read all of these articles.  There are alot of hidden gems and ideas in each of them.

So without further ado here's
"Things To Say & Ways To Help An Autism Parent Culled From The World Wide Web"

1) Stuart Duncan is a fellow autism dad blogger.  He's the big kahuna on the block of autism dad blogs.  He has a blog called Autism From A Father's Point Of View.  He wrote a post in May 2011 called "What to say and not say to a parent that has a child with Autism".  And on his list of what to say?

--You’re doing such a great job
-- I don’t know how you are able to do so much
-- Your child is progressing so well, you must be very proud
-- If I can help, just let me know.
-- I don’t know much about it but I’m willing to learn
-- I’ve read some studies, heard the news but I’d love to hear what you think


2)  Ellen Seidman writes an autism blog called Love That Max and she often writes for parents.com.  Back in July 2011 on parents.com she wrote her own list, 7 Things Not To Say To Parents Of Kids With Special Needs and took some heat in the comments section.  And a few days later she wrote a follow-up called What To Say To Parents Of Kids With Special Needs  Here's a snippet of her advice...


So what would be good to say about my son? Well, if you don’t know us and we are, for instance, hanging at a playground, this is what I would love for you to say: “Hello.” It’s the universal way of opening a conversation. It’s friendly. It’s pity-free. As reader Clementine said, “Simple hellos go a long way.” Or, if you prefer, “Wassup?”
Let’s gripe about how the playground needs a renovation. Let’s joke about how quickly kids grow out of their shoes. Let’s talk about the sort of stuff all parents talk about as they’re striking up a conversation. One commenter asked, seemingly facetiously, “What should we say: ‘What’s his/her name’ ‘How old is he/she – the standards?” Actually, the standards are much appreciated. If you think that having a typical-parent conversation is ignoring the elephant in the playroom, maybe you can reconsider your idea of elephants.
Once we’re chatting, getting more personal is cool. I’m OK with being asked “What’s his diagnosis?” or “What does he have?” (“What’s wrong with him?” is way negative and kinda rude.) Sometimes, people precede questions with “If you don’t mind my asking…” which is a nice approach since some parents don’t want to go there....
It’s different with people who already know me and Max, obviously. My friend Wendy always asks, simply, “How’s Max doing?” which leaves plenty of room to get into whatever detail I’m in the mood for. Oh, and anyone is always free to ask how I manage to stay in such great shape, though I suspect that is one question I will never hear...

3) Jean Winegardner writes an autism blog called Stimeyland.  She also sometimes writes autism articles for the Washington Times website.  In July 2011 she wrote an article for the Times about when someone said "I'm sorry" upon learning that her son has autism.  And one thoughtful commenter asked, "What might be a good thing to say?" and Jean wrote a follow up article called "What to say to parents of children with autism".  Here's a great snippet (but read the whole article cuz there's tons more great stuff)...

I think the most important thing to remember when you are talking to parents of children with autism is that they want you to understand their child. Most of us are willing to explain how autism affects our families and are happy to answer your questions. What we don't want are platitudes or assumptions.
If someone tells you his child has autism, ask how the child is doing. Ask what he is like. Remember that he is someone's very loved child.

4) On the autism blog Delightfully Different Life I found an AMAZING post called "Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving" filled with GREAT advice.  Here's ONE nugget that is EXTREMELY helpful to us asd parents that your friends/family might not think of, or do often enough...(but I IMPLORE you to read all seven!)


If you are inviting the family over, ask specifically about how you can accommodate, and try to follow the parent’s lead about the extent to which the child will be involved.  No gluten?  No problem.  Your Halloween decorations or your perfume may trigger a meltdown?  Easily fixed.  They are leaving their child with a sitter even though you’ve insisted it’s okay to bring her?  That’s fine too.
It’s much easier for us to tell people what we really need to do if they let us know that they want to know.  Otherwise, we will probably decline perfectly wonderful invitations just to avoid being an imposition on you.
For example, a child with autism might have a favorite video that can be the default setting when the socializing gets to be too much.  Kids may have certain foods that they must avoid, or certain colors that freak them out.  A child may need safety precautions that would be easy for you to take.  The family may want to be home earlier than most, so dinner could start early.  Jeannie, an adult whose only sibling, a sister, has special needs, says:  “Ask the parents if they want to also include their child to join everyone when they go out.  It is hard to find a sitter for someone who is an adult and has special needs. Including them is so nice because they already feel isolated and left out as it is.”

 5)  I found a GREAT autism blog called The I Love You Song and an AWESOME blog post from October 2011 called "10 ways to help a family living with autism".  Here's a few of them... (but please READ them all!)

3. Be present.Don't go missing. The life of a family living with autism often changes immeasurably and it can become very hard, with the demands of appointments, therapy programs and the like, to maintain friendships and even family relationships. Persist. Persist. Persist. They might not say it but the family living with autism most likely needs your support.

4. Focus on the child with autism
One of the toughest things about autism is watching your child struggle with things that are easy for typically developing kids. It's even more painful to listen to other parents celebrate their child's stellar achievements in detail. If you can, at least for a time, keep it brief and focus on the child with autism.

5. Practice random acts of kindness.
That thing when you have had a day filled with meltdowns and therapists in and out of your house, followed by a speech therapy appointment and a lovely friend drops in with something homemade to soothe all and sundry. Yeah that. It's the little things that make a big difference sometimes.

_____

So there you go...

Those are snippets from 5 great articles, but there are tons more!  Go google them yourselves...

And you autism moms & dads... Do you agree?  Are there any other things you'd like to be asked?  Or ways people can offer help?

We are a demanding fickle bunch, us autism parents, aren't we.  Sorry you all have to walk on eggshells around us...  but that's just the nature of the beast.  :-)  But deep down inside we appreciate the effort when someone tries to say something nice and/or supportive...  or someone offers to help. 

So PLEASE don't feel afraid to talk to us!!    :-)

the end...


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45 comments:

  1. Ooooh, I heart this post! I'm going post the vagazzle out of this.

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  2. I absolutely love it AD:)))

    Kate Wells

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  3. I love this. It made me tear up. my son was just recently diagnosed and it is so hard to find someone who is not rude, and Always getting "looks" because no one wants to take the time to understand.

    Michelle Carico

    http://www.facebook.com/Proud.Mom.and.Girlfriend

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  4. Love it! I have a dear friend who says wonderful things to me - most recently - "let me come over and watch him and you can just SLEEP." Whew, she knows me well :)

    Olivia

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  5. Well done AD! As a fellow asd parent I really love this post!

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  6. I honestly want to give you a hug and just say thanks. Here is the best I can give you OOOOOOOOOOOO. It is so awesome how you can put it on such a level that most people can understand. My family is blessed to have a circle that understands and does all that needs to be done and beyond to make life easy on CJ. Not everyone has that and at the same time we still encounter people who are absolutely clueless. I am sharing your blog with everyone I know inside and out of my local Autism Community. Thanks so much for this, it is helping so many and will continue to do so as long as we spread your words and our own.

    Awesome Mommy Trish

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  7. I agree with everything you posted. I also believe that family and friends need to also give space when we are in the middle of dealing with a meltdown or other difficult situation. I find that there have been many times when well meaning people try to step in and help, not understanding that it can often worsen or prolong the situation. When someone wants to help in those instances I would ask that instead of doing, to ask if they can help. Sometimes, just knowing that someone is there supporting me is enough, other times I can tell them what we need even if it's just that they leave the room to give my son space to calm without added stimuli.

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    Replies
    1. well said. I wish I could get my mother to listen to this advice...

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  8. I remember once during a meltdown in a supermarket I was on the ground restraining my son. I wasn't bothered by all the stares, comments etc but I did have one extremely nice lady approach me. She 1st apologised if she was interfering but asked if I needed help, was there someone else in the store she could ring to help, maybe help carry my bags to car so I could make sure my son stayed safe or could she get him something to help calm him down. I was so taken back by this strangers kindness I nearly cried and she was just embarrassed as she felt she was interfering but said even she was pissed off at other people standing staring so had to say something. It's the small things :)
    Claire

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  9. I'm thrilled to be on this list. Thank you! What a great resource to have compiled all of these. I'll have to go back and read the ones I haven't already seen!

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  10. Great Topic! Mahalo for including Delightfully Different Life! Bobbi Sheahan did two wonderful guest posts on this topic for me. Both are easy to find, just click on Guest Posts from my home page.

    BTW I welcome guest posts if you are interested.

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  11. Love this post.
    Just wrote a piece that's a little thank you to the staff at a lovely restaurant who were really brilliant with my little fella. Could do with a few more random acts of kindness so I think I'm going to share this post as a great big hint!
    xx

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  12. Lovely! I SO value my friends who make the effort to have a real relationship with my little guy. Knowing his preferences and dislikes without having to check with me. Then doing things like sending me recipes he might like, turning up with a prepared meal that he will eat, including US in their lives, making us feel like we're not too much hard work (even though we are some days). Thoughtful, generous and genuine = be that!

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    Replies
    1. well said. :) I wish I had friends and/or family like that in my life. Just simply and honestly caring can go a long way sometimes. Especially when backed up with tangible support and friendship. :)

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  13. That's awesome, and helpful to those of us who don't have a kid w/autism, or like me have a grandson with a mild-ish form but still needs to know how best to be there for him! I'm "sharing" this one on FB b/c it's so helpful. Thanks!

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  14. I would like to add a pet peeve of mine, most all of my friends will say to me, "well, that's just regular teenager stuff" WHY do you have to qualify ANY behavior I am complaining about as "normal" or not?!!!! I HATE THAT!
    It's not like I'm asking you for advice about what's "normal" I know already!!!
    I just want an empathetic ear when I'm overloaded, that's IT.
    Don't solve it, don't be an expert about it, just LISTEN to me and say stuff like, that's rough or wow, you must be exhausted. Folks are always trying to put behavior in a box and walk away.
    Of course my teenager acts like a normal teen AND he is Autistic (!) its a very, VERY difficult combination on a single parent with limited support, freaking just listen and empathize, PLEASE!!
    Phoenix

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  15. Thanks for this! Very helpful!

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  16. Love this post! I had 2 people (one I knew) last year say they were sorry my son is Autistic. I flipped my lid the first time because she followed the "I'm sorry" with a "well, he doesn't look Autistic!". I'm like, what does Autism look like? DUH! The second time I simply answered with you don't need to be sorry. My Son is wonderful and such a happy, loving little guy!.

    I've had about 5 rude people experiences. Each one I usually handle with either making the person feel embarassed and uneducated or saying something mean with curse words. I know, not always the best approach, but I hope they learn not to do it again to someone else. But one time it was different.... 2 years ago on Fathers Day, I was in the local drugstore with my Son getting some last minute cards. There was a power struggle with my Son and I about him wearing his shoes inside (he was in an anti-shoe stage. You all know what I mean).I pick my battles, and that wasn't important to me so I carried him in after he refused the cart. While looking at cards he decided to push his way out of my arms and wanted to sit on the floor. He started flappping and making raspberry sounds but was overall pretty quiet considering. I gave him a beanie baby from my purse for distraction.You would have thought I was the worst Mother ever. Some lady started yelling (literally) at me about how I am a horrible person for letting my Son go shoeless and how I should be ashamed of myself for letting him act like a spoiled baby on the floor. Just as I am about to open my BIG FAT Mamma Bear Mouth, a nice woman (about my age, in her 30's) next to me whips around and tells the woman off. She said excuse me but I belive her son is Autistic and he is very happy right now. How dare you insult a Mother who is clearly doing her best being the best Mom she can be. I think he is fine the way he is and you are an ignorant person for judging someone and their parenting based on absolutely nothing but your opinions. My nephew is autistic and these parents are to be commended, not harassed by rude people like you. Then she turned to me and said you are doing a great job and I hope she opens her mouth again because my next words I will say to her will be F*$# off. I didn't know whether to laugh or cry. She patted me on the shoulder and said good luck and walked away. And that was that. All the people nearby reading cards smiled. The offensive woman was shocked and hopefully learned an important lesson.

    :-) Jen (Ryan's Mommy)

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    Replies
    1. HUGE blessings on that amazing lady who stepped in! And I bet it gave you the biggest boost, Jen! (I have an Aspie grandson - Gretchen)

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  17. Very good post, first time ive read your blog, stuart shared this on facebook and so just had to read,
    My son has autism, and i must say, most people i know say nothing at all, In fact not many invite us over, but hey thats ok, Ill find new friends who will.

    One thing a stranger said to me on a bus about my 4 year old son.
    "Whats wrong with him?" my reply, nothing
    "oh why's he doing that then" my reply, "doing what?"
    now she looks confused and said playing with a baby's rattle. my reply "he likes it" then i decided id had enough fun with her and said,
    "he has autism"
    To which she says, "oh im sorry what a shame"
    Let me tell you im not sorry my son has autism, and its not a shame, ok so he has issues that would make life easier without, he cant talk so figuring out what he is unhappy about is harder, but he's my son, I love him and he's happy nothing to be sorry about at all.
    Rachael

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  18. I absolutely love this post, I feel it provides a great perspective for parents who do not have a child with autism! My daughter was just diagnosed last year and it has definitely taken a toll on the family, particularly the constant tantrums. I am trying to help teach her to control her feelings and have found some good advice on http://onlineceucredit.com/edu/social-work-ceus-pcs to help encourage positive behavior. I recommend taking a look and hope you find valuable information as well.

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  19. Hi,
    This is GREAT! I am an autism parent too. My name is Lori. I have been an autism parent for 20 almost 21 years now. I have never seen a site like yours before and I think it is FANTASTIC!!!
    The articles are great and I want to go read them all. It sounds like a lot of parents who follow you have younger children. I would like to encourage you from experience that all your hard work pays off. Be as consistant as you possibly can and know that it gets better. Keith is doing great now and will be graduating from High School this May and I could not be prouder!!!! It has been a long hard road but it is worth it. I would love to talk with you more about your children. You can reach me at loriesterly@yahoo.com Take Care and keep up the Great Work! ~ Lori

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    1. Nice to hear from a parent of an older child. Our son is 14 and the past 2 or 3 years seem harder than when he was younger. Now that he's older, it's more apparent he's special-needs/autism., esp.going to the playground with a 6 ft. kid that I have to monitor and coach every moment. I'd love to find some blogs from parents with teens with autism.
      Susan

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  20. I have one or two great friends who don't pretend to understand but do always offer to take my other son. I like that their honest enough to admit they couldn't take my son on spectrum. If I'm having a really hard week with him the little things like offering to do some ironing, or a run to the supermarket. I don't think iv ever taken them up on it but the thought means an awful lot! They never pretend to be experts, but do remind me I only have to ask and theyre there.
    Stuff like that is worth it's weight in gold to me
    Claire

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  21. I am a recent addict to your blog and have to say that in the past eight years I have seen or heard it all. Not only am I an aspie mom but I am a mom of HOM, high order multiples. the rude questions, the comments, the oh but he looks normal. You know what he is normal,, he is a loving wonderful child who does ot deserve your critisim and neither do I.

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  22. love this blog post Autism Daddy :) Thank-you. :) I will definitely be passing this one on. :)

    As far as something I would add?

    1)Please don't offer to help if it's only to be polite and you're hoping I will say "no" and/or have no real intentions on following through. I would rather no offer be made then to have several empty ones fill my head, waste my time, and deflate my faith in my fellow humans.

    2)If you see a child running and the parent hopelessly trailing behind, please don't open doors, clear paths, or otherwise help the child's "escape". Especially if you can clearly hear the parent frantically pleading for someone to "stop that kid" so they can catch up. If we're asking you to stop our child, we're not going to turn around and attack you because you put your hand out to grab him, reached out and pulled him back, or simply slammed a door shut in his face (in an attempt to keep him from getting outside). More than likely we'll be thanking you immensly once we catch up in between scolding and hugging our child, trying to calm down our little bolter, and catching our breath.

    --David's mom

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  23. Well done. Love the post. My 5 yr old is Asp/ADHD/SPD/ODD & CD. The amount of people we have had comment on our parenting skills during a meltdown is incredible. "Bad parent", must be a child basher as I hv tackled my son to stop him running out of centre so he won't get run over. But the one I hate the most is he needs discipline. They obviously can't control him. I tell people that he is autistic now when he is in meltdown & all they do is side step us & nod. Another one is has he had his medicine or I think his medicine is wearing off. Give it a rest. He is 5. He is gorgeous. C the good. Not what he or us can't help. :-)

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  24. My closest friends rejoice with us on every milestone, no matter how delayed. They offer to have our boys over to their house now and again for a couple of hours' playdate, just so we can have some quiet "me" time. They accommodate dietary issues. They see our boys the same as they see their own children. And we reciprocate for their family on all of the above. In this happy little bubble, it's as it should be. :-) There's no accounting for what happens outside this bubble, which makes me appreciate my friends all the more!

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  25. I was thinking the same thing as Kath above. Those who are close to us and love me and my daughter understand. One close friend who has become Auntie Betty always says "how's my girl?" She loves Sophia, sends presents and tries to see what she's into currently. and she celebrates with me when I'm thrilled about the latest thing my daughter has done. She is plain and simple, still my good friend

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  26. This post made me all teary. The people who have really stuck in my mind lately have been employees of various places. Most notably, some Delta flight attendants, some teenage boys at an amusement park (including one who helped me peel my son out of a bumper boat with the most understanding smile). It's the people who just pitch in and help, and give me a non-judgmental look. When I am trying to get my son up as he swims across the floor of Walmart, I'm not ready to get into a conversation about autism. Plain old physical help with my purse or my cart or a sneaker is really, really great.

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  27. Hi, I'm a newbie follower. And I love your blog! I don't have a child with autism, but I have friends that do :-) so I like to keep up to date on the know-how. My daughter is 7 and she has a few friends with autism, as well. I'm happy to say she treats them no differently. Great job, and I read somewhere you are a runner! I am running my first 5k late this summer. Bye for now. :-)

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  28. Hello there, this is Suz from the I Love You Song....thanks so much for including my post in your wonderful list. I am ever so grateful for it to be shared. Now following your blog and look forward to reading more. 5 Aussie Autism Mum bloggers have launched a new blog today....a new community. Come see us at www.autismourwords.com.au xx

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  29. YOU ARE SUCH A BRILLIANT DAD! Thank you for taking the time to help others

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  30. The fact is people just don't know what to say everything seem to insult parent so the best thing to do is just avoid the family that way you don't have to worry about it. Most people are not going to change their way of life for you and your child.I have seen parents insult people so bad likes it's their right because they are the parent of a child with asd,well guess what it's not their fault that you have this child so just remember for every insult you spew you're just making it easier for your child to be insulted.

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  31. Probably the best post I've seen about this is on snagglebox.com.

    A list of 39 ways to help/things to say...

    http://www.snagglebox.com/2013/01/the-awesomely-big-list-of-ways-to-help.html

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  32. I try to educate my family an some friends they find it easier to avoid us that way in their head they can't offend me by saying the wrong thing.

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  33. I like this post. unfortunately, I have found that most of our so called friends avoid us due to our sons autism. We have lost a lot of friends after our son started showing differences. I'm lonely for conversation the little things just visit say hi. Out of All my struggles as a mom with a ASD child I say becoming lonely is the hardest. I also agree with clair. Someone offered to help me while my son through a tantrum on the floor at mcD's I was also 8 months pregnant. I appreciated someone helping me calm him down and get him off the floor.
    J.J.

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  34. Well said! I really enjoy reading your blogs. I hope others get as much out of this as I did. Thank you for everything you post!

    Amanda

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  35. My worst experience was when a Doctor said if you dont settle him down I will have to terminate the appointment. Then when i said he has a disability and it is our aim to desensatise him to this environment, he had the nerve to say, your the one using the disability as an excuse! Although shocked and hurt, we chose to 'rise above it'.
    Anyway love your post AD.Great stuff. Love your work. Your a kindred spirit. I too am a AD, on the wrong side of 40 with an 8 year old non verbal ASD son, who has taught me how to live and love!

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  36. When we talk about what our child recently did--good or bad-- don't comment that "that's pretty typical" After a good thing, that devalues what we are proud our child has accomplished. After a bad thing, you don't really know to what extant the event was bad, and why the child might be behaving that way UNLESS YOU WERE THERE.

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  37. I think the key is to listen more than talk. Don't cut us off in a way that says "I'm not interested." If you can't be interested in us and our children, how can we be intersted in you and yours?

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  38. I am pleased to know that I am doing the 'right' thing for my friends with kids on the spectrum...I offer to watch them, I ask what I can do to help in a meltdown, I offer our spare room as a quiet, neutral space for them if the kid is overwhelmed, I ask what aversions do they have etc, any food issues, colours, perfumes and textures etc so I can remove them from the Childs immediate environment if they are coming over. But I also interact with their child, talk to them etc, even if it is one sided conversation, I will play with them if they will let me and I do everything I can to include them. For their parents I offer babysitting, homemade meals they can freeze and reheat on days where chaos reigns, and I ask about things with their child that aren't ASD related. I have sometimes felt that the parent might think I'm trying too hard or being intrusive...when all I want is to include my friends and their beautiful talented kids in my life and do my best to accommodate their needs.

    - Kiko

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  39. I am crying as I'm reading all these replies. My child is not autistic but is an Aspie Kid. I can't in no way relate to these parents because my boy is very high functioning. But I do have a friend who has 2 autistic kids. We are great friends and I would l love for her to bring them to my house to play with my but i I understand why she doesn't want to but after reading this post and the replies, I might be able to talk her into bringing her boys over if I can make some accommodations to make them feel comfortable.
    Thanks for this post!
    Mari

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  40. Watch on you tube the shit ingorents people say autistic it true it all been say to us
    An I hate when someone dosnt no what to say so they say dumb stuff like wow you got on so tall an stuff wth

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