Thursday, April 14, 2011

Top Ten Things You Should (and Shouldn't) Say to The Parent of an Autistic Child


If you're the parent or caregiver of a child on the autism spectrum, Autism Awareness Month is not for you.  You are already aware of autism.  Like, really, really aware.  Aware that you need another cup of coffee, a Xanax, and possibly an advanced degee in Education Law.

Autism Awareness Month is for everyone else.  To help out, here's my Top Ten Things You Should (and Shouldn't) Say to The Parent of an Autistic Child.

10. DON'T SAY: "Wow, your son is great at math.  He's just like Rain Man."

      DO SAY:  "Wow, your son is great at math."


9. DON'T SAY: "He should probably be in a special class, so other kids won't make fun of him."

   DO SAY:  "We should probably be teaching our children more empathy."


8. DON'T SAY:  "You should try giving your kid more discipline."

    DO SAY: "You should try these brownies I made for you."


7. DON'T SAY: "Wow, your kids all seem to have a lot of problems.  Have you ever heard of Munchausen by Proxy Syndrome?"

    DO SAY: "Wow, you're really on top of things for your kids.  It must be hard, but it seems like you're doing a great job."


6. DON'T SAY:  "You should change your child to an astronomically expensive, all-organic, gluten-free, casein-free diet of locally-grown organic broccoli and imported, cruelty-free snake oil capsules."

    DO SAY:  "Please sit down and rest while I make you some bacon-topped meatloaf and pour you a glass of wine."


5.  DON'T SAY: "I think autism is over-diagnosed these days. They're handing that label out like Mardi Gras beads."

    DO SAY: "I am alarmed by studies that show that autism spectrum disorders are actually under-diagnosed in girls and minorities.  Excuse me while I e-mail my legislator about my desire that he or she increase the fundng for autism research and education."


4. DON'T SAY: "Isn't he getting a little big for diapers?"

    DO SAY: "Here, I picked up this case of diapers and some extra Febreze for you while I was at the store."


3.  DON'T SAY: "I wish my kid was getting free extra help in school like that."

     DO SAY: "I wish I had remembered to mention to my legislator my desire that he or she stop slashing the budget for special eduation services like they're freaking Zorro or something.  Excuse me while I go send another email."


2.  DON'T SAY: "You look exhausted."

    DO SAY: "How about if I play Lego Star Wars with your kids for the next four hours while you take a nap?"


1.  DON'T SAY: "He's fine / it's no big deal / he'll grow out of it / all kids are like that."

     DO SAY: "It's so great that you got the diagnosis, even though he's obviously awesomesauce exactly the way he is."

87 comments:

  1. God I love you. Same wavelength, but at different stages of our journeys. One day we shall share a glass of wine and chat, even if only on skype!

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  2. Is it wrong that now I just want bacon topped meatloaf and a glass of wine??

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  3. I'm taking a wild guess here, but I'm thinking you have heard these all in some form or another. Is it being unaware or is it the passive-aggressive mompetition that seems to permeate our society these days? When did we lose the "if you can't say something nice, don't say it at all" filter?

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  4. @madmother : lol I just want the wine. :)

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  5. I love this list! You hit the nail right on the head with each of these!

    I'd add this one:

    You shouldn't say: Both your boys have autism? Do you have any other children? I'm so sorry, that must be so hard for you.

    You should say: Absolutely nothing. Just don't.

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  6. Lovin' the list especially the diet one....love that one!!!

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  7. oh the freakin' diet BS-- you know, mine is 18 and I remember 15 years ago the comments about 'you ought to remove' the red dye #40, the gluten, the casein, omg, do NOT make stupid suggestions from what you read in 'Woman's Day'! It is NOT MY MOMMY MENU that is causing this! And BTW, the stress of adding food-super-sleuthing put me over the edge!

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  8. I can very much relate to this one... I've heard the "Don't Say" version of #1 TONS since Son was diagnosed in Dec 2004.

    I can add one as well...

    Don't Say: "I can't believe you take him out in public" when my child is obviously tantruming or mutter things under your breath about my parenting.

    Do Say: "Would you like to go ahead of me in line so you can get him home?"

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  9. This is great. GREAT!!! I <3 Brownies!!!!!!!! :)

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  10. This is brilliant, funny, sad, true. Hope you don't mind, but I'm linking you up in my blog post today -- because everyone should come here and read this. Awesome!

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  11. Sending this to staff members at my child's school!!!!
    Thanks for the great post!

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  12. Yyyyyyyyyyyyyeeeeeeeeeesssssssssssssss!!!! I think my MIL has said all of these things.

    THEY DO NOT HELP AND THEY MAKE ME WANT TO KICK YOU IN THE TACO.

    (sorry for the shouting-this just drives me bonkers. Like dealing with the household issues are challenging enough now we get to deal with this nonsense.)

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  13. I love this! Oh in a perfect world... Thanks for sharing.

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  14. You need to add EPICSAUCE to your vocabulary ... my girls who are 11 & 9 say that when something is, well EPIC. As in "SRMM's blog is EPICSAUCE!"

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  15. I love you! I have said many times that I do not have a special needs child. That being said again - some of those statements on your list fit for SOOOO many other things that "regular" children go through on a daily basis as well. I personally have let mothers with babies / small children / difficult children - go ahead of me in a line just because it is the RIGHT THING TO DO!!! I salute you again SRMM!!

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  16. Don't forget this one:
    Don't Say: "He can't have autism. He talks so well!"

    Say: "Wow, his vocabulary is extraordinary for a five year old!"

    (To which I will say, thank you Thomas and Friends!)

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  17. Don't say: You let him get away with so much stuff, it's no wonder he acts this way.

    Do say: I can see you're having to pick your battles and address the most pressing needs while some other issues will just have to wait their turn.


    Don't say: He's just immature, because you let him act that way and get away with it.

    Do say: It must be tough to have his emotional age be so much younger than his chronological age.


    Don't say: I think too many people use Aspergers as an excuse to not have to make their child behave.

    Do say: I didn't realize that Aspergers/autism could cause so many small things to be big issues for people affected by it. Are there any social or environmental triggers I should be aware of when I visit you or work with your child?


    Don't say: anything that starts with, "If they were my child -" Just stop right there, they're NOT YOUR CHILD.

    Do say: What do you find works well to help your child? Could you show me? And I'd be happy to bring you some Ghirardelli chocolate, and watch your kids for a couple hours this weekend.

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  18. Love it!
    you are right the comments are pretty awesome as well.

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  19. I am LOVING this.

    Most of these apply to just about ANY child-related issue.

    Don't say, "Hm. Isn't your daughter gaining weight?"
    DO say, "Oh, your daughter is SO lovely!"

    Don't say (when a child is having a meltdown in public and the mom just hoists up the child kicking and screaming and firmly but gently puts her in the car), "Oh, she's just a child! Don't be so strict! Just GIVE HER THE CANDY. It can't hurt her this once!"
    Do say, "I admire how calm you are, and what a good example you're being," while holding open the door and offering to push her fully-loaded grocery cart to her car, since she obviously has her hands full.

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  20. Don't: suggest the supernanny. Just don't go there.
    Do: look around for a quiet place for him to be moved to.

    Don't: act aghast that he doesn't wear pajamas!!!!1!
    Do: Say what a cute shirt! With his sensory issues, I know it was a struggle to get it on him!

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  21. "Wow, your kids all seem to have a lot of problems. Have you ever heard of Munchausen by Proxy Syndrome?"

    OMG - did someone ACTUALLY say this to you? Where did you hide the body?

    Wow.

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  22. Wettin' my pants - this is great!

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  23. LOVE IT
    once again thank you so much
    are these things that have been said to you because youre answers had patience hahahahahha
    much needed today

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  24. I love #8's simplicity. And besides, what's not to love about brownies.
    Once again, super post. ROCK ON! Definite Epicsauce (thanks for sharing, 1tuffmomma)

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  25. Wait - what's wrong with Supernanny?? I suggest watching her show as homework to all my Behavior Consulting clients!!

    And this list (and additions) is wonderful/awful. I have to say that #3 made me cringe... well, most of them did, but for some reason that one got me.

    Good work! And, as I've said before, I recommend your site to my clients who are parents of kids on the spectrum (along with Supernanny - ha!). All of these awareness posts only solidify that recommendation!

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  26. My grandmother always always asks me every time I see her, "Is he any better?" Like he had a cold or the flu or something. Why can't she just ask how he is doing?

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  27. I get "He can't have Aspergers, because he looks you in the eye when he talks!" Oh, wow, you're right! Let me call his doctors and tell them they obviously misdiagnosed him....You can go watch Rain Man again, and then go diagnose some other kids based on that movie while I'm feeding him only green food and buying him a case of plastic gloves so he doesn't get the Ebola virus from touching one of the dining room chairs.

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  28. My kid just got officially diagnosed as PDD-NOS, after spendig considerable time with an "autism can't be ruled out" diagnosis.

    If I tell you my kid was recently diagnosed, don't say "I'm sorry." I'm not sorry -- we finally got an effing diagnosis . . . AND my kid rocks regardless of what label you want to put on him.

    If you feel the need to say something say, "Really? what will that mean for your family?" or "How are you dealing with that?"

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  29. it's pretty sad how I have heard variations of far too many of these.

    "Autism is the new designer illness"

    huh really!

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  30. love this! i came over from http://avant-garde-living.blogspot.com - i love the way you write honestly with a twist of humor. I don't have kids at all so i'd probably be the one that would stick my foot in my mouth about something like this. thanks for the do's and don'ts!

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  31. That was a fantastic post. You nailed it!!

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  32. The New Mom on the Blog asked the exact same question I was going to.
    Did someone ACTUALLY say that shit (#7) to you?
    How did you not slug them in the face?

    I think that your "Do" list can be summarized with one question that everyone should be asking: "How can I help?"

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  33. After #7, those brownies better have been "magic" brownies! I'm talking SPACE CAKE here! By the way, need me to help you hide any corpses?

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  34. Are you secretly observing my my life.(Mother of two autistic boys)

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  35. Love this article! :-) :-) Going to forward this onto my autism moms!!!

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  36. You're so right on with these. Love this post! That last one is so true. "Oh, my kid does that too; it's no big deal." Yeah, thanks for diminishing me and minimizing everything I go through while really not getting it, fuck you very much.

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  37. I might add just one personal comment, when another mom looked at my son, shook her head and said "There but for the grace of G-d go I"....
    My response should have been "In other words better me than you"

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  38. First of all, God Bless You!! My nephew is autistic and his mother has probably heard most of these comments. It is stunning how obtuse some people can be. Keep up the good work, you are spreading a vital message to the world!
    @Stimey: "Fuck you very much" Love it! You hit it dead on with that last sentence!

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  39. Thanks for the advice SRMM. I don't think I've ever said any of those things, but I might have thought them. Your blog has helped me open up to a wider spectrum of juvenile behavior and not be so internally rigid in setting "standards." I still believe I'm never too old to learn.

    W00t! Saw your clip on "The Talk" today. You're a cute one. Congratulations on the cameo.
    ~physicsmom

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  40. As the aunt of one and godmother of three more beautiful, bright, creative children who just happen to also be autistic, let me say, "Thank you very much!"

    My friend often tells me things that have been said to her, even by educators and people in health professions. And my sister just bottles it all up and tries not to cry. It is beyond sad.

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  41. my son's peditrician stated "Oh he is Rainman" please healthcare professionals, this is a no no

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  42. Love this and all the comments!

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  43. There are a few people who, if I had the nerve, I would love to send this to. The original 10 items as well as the others that have been added in the comments.

    SO SPOT ON!!!!!

    And I've got twins on the spectrum -- people JUST DON'T GET IT!!!!

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  44. Hi! I am a special educator and I am very sorry to add this one, said by someone who should have known better, about a kindergartener: "well he is very affectionate which is really unusual for a child on the spectrum." REALLY?? I have worked with many children, adolescents, and adults with autism over the last 10 years and I promise you, it is not unusual to enjoy giving and receiving affection. Holy stereotype! This woman probably should have said: "He is such a sweet and lovable boy, too bad I'm too much of an incompetant B*%&$ to deserve one of his amazing hugs."
    Also, I hate it when people start asking about unique (Rainman-like) abilities immediately after hearing "autism."

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  45. How am I only just now finding your blog??? So glad I did. :)

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  46. And as very proud mom of a girl with Aspergers (she is perfect just as she is):

    When you see my 16 year old daughter with her girlfriend (who also has Aspergers) wearing their pink cat ears at the mall, DO NOT roll your eyes at my supposed lack of mothering skills or their supposed lack of maturity.

    They're happy, having fun and looking quite cute.

    And my parenting skills are far better than you understand.

    This is an awesome list!

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  47. OMG!!!!!!!!!! I'm laughing so hard! A friend gave me this link. I have a son on the spectrum... you're dead on with some of those remarks! I'm going to enjoy following you! ;-D

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  48. As always...you are spot on!! Thank you for the laugh after a very long and difficult day....you are awesomesauce!!

    Oh...and you can keep the meatloaf, but please pass over some wine and brownies...preferably @Alaras's brownies!! LOL

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  49. I think you are currently my favorite mom blogger ever. (autistic adult. There are so many people I just wanna smack sometimes).

    Don't say: "Poor dear! How do you cope???"

    Say: If you're actually thinking like that, just don't talk. Possibly ever.

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  50. Finally I can stick 2 fingers up to the professionals who have accused me of No. 7 and say - see he does have Autism. Now get off your butts and help rather than keep me from him.
    I have Aspergers too :-(

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  51. After reading this piece it occurred to me that we as parents unite in a solid force as we tell our stories. And they tell 2 friends.....etc. http://www.examiner.com/autism-parenting-in-national/politically-correct-words-for-addressing-autism

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  52. Where have you been all my auti-mom life?

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  53. I'd like some bacon-wrapped meatloaf, and I want to be friends with Lisa S. and Stimey, because they say things the way I *want* to say them. (Still laughing about kick you in the taco...)

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  54. Awesome words. My eldest (29months) is not autistic but has many sensory issues and most importantly, oral and speech apraxia. He will NOT talk for many years while going through 3-5 speech therapy sessions a week. If one.more.person tells me he'll outgrow this neurological disconnect between his brain and his mouth I shall scream at them from the highest mountaintop and yes, someone will have to hide the body.

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  55. I love you kitten, that is all. Brilliant post.

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  56. First time on this one and am so glad to be here! Soooooooooooooooooo nice to know not alone. Have 2 PDD-NOS boys. Loved original post and all the comments. Thanks! Have to sign as anonymous cause don't understand all this yet but yet again, thanks!

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  57. My daughter has ADHD and my son has Asperger's. They are the most awesome kids you could ever have the pleasure of meeting. I think I've heard variations of almost every single one of those shouldn't say comments at one time or another. What bothers me the most are the ones with the snake oil suggestions. I mean, what makes these people think that I WANT the children in my life not to be the way they are. I love them like this. How about telling me that it's really great how I've taught them that they are worthy of love and acceptance just the way they are? Maybe it might save me from having to tell you something that will really hurt your feelings in the same way that you are willing to hurt my kids.

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  58. How about (on diagnosis)
    "That's great! Now you'll have an idea of what road you will be travelling down and some of the different sights and experiences along the way - and perhaps make sense of some of the experiences you've already had!"
    (Backed up, of course, with 'That's how it's been for me and my mind-expanding boy!"

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  59. Great points... with a sense of humor.

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  60. If I had a dollar for every time I've heard #1...

    I also hate "but she's soooo cute!?" And "but she's soooo smart!?" As if autistic people must be ugly and stupid. ?

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  61. Don't say: but *this* child has "true autism"

    Say: I'm learning more about the differing spectrums of Autism.

    Which is similiar to saying:

    Your child has issues

    With my reply being & you are a goombah...

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  62. Oh, that autism spectrum. It's quite a ride I tell ya. I can eat bacon top on meatloaf not and a bottle of wine every single day. But you know something, I have good days and amazing moments as well. And I love my boy!

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  63. Brilliant. Absolutely brilliant. I have three on the spectrum, and I have heard a variation of every single one of these. The MbP one from my sister-in-law. She's childless, so I'll wait patiently for my revenge. :)

    My middle child is the lowest functioning of the three, and will regularly just whip it out and pee in public. He has to go, can't tell me, and doesn't want to pee his pants (he's 5). Holy crows, the looks I get. OMG.

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  64. My children do not have ASD, but 2 out of 3 have ADHD & ALL of this applies like it was written for us! In fact, I'm starting to wonder if this is part of the 'undiagnosed' part of my daughter's issues, too many things sound very familiar. She's 11, but I could totally picture her walking through the mall at age 30 with pink kitten ears! She's good at math, but has never figured out how to play with toys other than to chew on them or break them. Lots of social triggers too.
    ADHD is also a neurological disorder, yet in elementary school the BOE wanted me to sign papers stating that my son was 'mentally disturbed' so they could bus him to a juvenile detention elementary school in the ghetto.
    My kids are also 'cute', therefore their mental breakdowns are simply because they're spoiled, and not because they simply can't focus one more second. Try teaching Lego Star Wars & see who your gifted students are, dumbasses.
    Drs feel they should never be yelled at ever, no matter how frustrated or sleep-deprived you become, but forcing heavy narcotics on them is what 'good' parents do. My son was home-schooled for 2 months after detoxing from years of Ritalin (a requirement to keep him in public school) which finally resulted in uncontrollable motor tics. It went on for months at school, but I didn't know about it because it wasn't happening at home. Apparently uncontrollable flailing body movements & strange head bobbling are part of ADHD?!
    My kids are also 'lazy', because they refuse to focus, (yet have trouble with sitting still & constant fidgeting? Also results of poor parenting.) And they refuse to be organized.

    You can add this one to the list:
    My Dr. asked me to tell him what drugs I did while I was pregnant! ARE you kidding me?! I gave up COFFEE, my life-blood because they're not sure how it affects the fetus! I had migraines that could've killed the Terminator! He asked me to be honest, so he could 'help' my children after the damage that I caused! Ironically, with my 3rd child I gave up & drank coffee, & lived on cookies & ice cream. She's a 'perfect' child & exceeds everyone's expectations. She gets little attention because she doesn't desperately need me every second. That's one big plus for special needs kids. We're together every second, and as a result, probably a lot closer than other parents with 'regular' kids.

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  65. This post actually made me cry, at the memory of someone telling me, during my fears and indecision and not knowing which way to turn, that I WANTED something to be wrong with my baby...

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  66. Great list. I shared on FB to educate my friends. I once had a dermatologist who didn't bother to read my daughters chart before seeing her ask "Can't you CONTROL your child" when she wouldn't let him examine her

    Once in the checkout line when she wouldn't stop touching all the candy a stranger told his son "I know son, but she is not MY child though so I can't do anything about it" as loudly as he could. I wanted to say..."If I try and stop her then we will never get out of this line and I will have to leave the store with screaming flailing child and my family will starve because we have no groceries."

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  67. I hope you don't mind but I have added you to my blog roll.... this was wonderful.

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  68. Many, many epic thanks yous : ).

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  69. Another great blog post. All very insightful advice. You are wise beyond your years. I need you as a friend. :)

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  70. I had the SPECIAL EDUCATION coordinator for the school district say, "There are kids who were diagnosed as autistic at your son's age who are making straight A's in high school, so not all diagnosis are accurate..." Uh, so if he's autistic he can't make straight A's, and if he makes straight A's, he couldn't possibly be autistic? Who's to say the diagnosis and treatment it brings didn't help get them to the point of making straight A's? I personally don't want MY child to be the one to test the opposite of that theory out.

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  71. That's ridiculous. My very intelligent autistic son is *awesome* at school. With his aide and a great teacher, anyway.

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  72. Don't say: You must suck as a mother if you have to keep your child on a leash to keep him with you! or I would never do that to my child no matter what. or Why are you putting that perfectly healthy child in a cart, he has legs let him walk. or When my child was that age, he/she knew better than to act that way!
    Do say: Can I hold the cart steady for you? or You're awesome for doing what is necessary to keep him safe.
    Thank you very much, I know all of that and if my child were "perfectly healthy" as in neurotypical no I wouldn't put him in the cart, or put him on a leash because he wouldn't run off for no (apparent) reason or stop walking to feel the softness of the girls clothing because he wouldn't feel the necessity and... you get the picture. I could go on for days with the b.s. I hear about.

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  73. LOVE LOVE LOVE this!!! Definitely sharing and may I repost on my blog too?

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  74. "But there are kids who don't talk AT ALL at his age... They just rock and rock, and they'll _never_ get better, it's so sad! At least you're not in THAT situation."

    Actually, miss public health nurse, that would be me -- fair, enough, not my son -- but, um... me. Eh? Oh. You look shocked and a little uncomfortable. Sorry 'bout that... I can be a bit slow on those things... Just give me a sec to get my toung out of my cheek and I'll be right with you.



    (It went on for MONTHS like that. And everyone had a new "expert" I needed to talk to. And I felt like it would ruin relationships to decline.)

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  75. And please DON'T SAY "I read this article in the National Enquirer about how autism is caused by taking Tylenol 6 years before you got pregnant!" because I really don't have time to smile and nod and pretend like you're not stark raving mad. Trust me, I've done my research. If there's a credible theory or new therapy that makes even the slightest shred of sense, I've probably seen it.

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  76. I love love love this article. As a mother of three kids with autism, it makes me happy to see other mothers out there who have figured out that humor is a good way to deal with all the craziness. Right now I can definitely relate to the diapers and febreze one. Ha ha. It made me laugh right out loud,

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  77. TOTALLY needed this today. Totally. And I could add any sentence regarding suggestions to change my son's behavior that start with the word "just". Like it's no big deal. Need him to sit through something quiet? Just give him crayons! (never mind he doesn't understand drawing or have the fine motor). And the diet thing? Oh sure. No problem. All he'll eat is cheap frozen pizzas and burgers with catsup and cheese ONLY... take out gluten and casein alone and that eliminates the things he'll eat! ARRRGH! Thank you for this!

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  78. Thank you. If you don't mind, I would like to link your post to the next one I do about my family's situation(s).
    I'll say this: It was hard when my oldest was having a VERY hard time with undiagnosed bipolar and Aspergers. It's very VERY hard now having people criticize me now for continuing our family. We have 5 children, and are adopting a little girl with special needs. In the mix of diagnoses are one bipolar, 1 asperger (2 if you count my husband), 4 ADHD, 1 SPD, 1 depression/anxiety.
    If I had a dollar for every person who asked me "Why are you having another one, don't you have your hands full already?" I would be able to pay for all the therapies/meds that are needed around here.

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  79. I just saw a link to this post, eons later, and am kneeling at your feet with my favorite Sea Salt Dark Chocolate from Lindt in offering. Thank you. You're awesome.

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