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10 Things You Shouldn’t Say to a Parent of An Autistic Child

Noautism

1. Did you vaccinate your child? I do not care if you are for vaccinations or against them but it is none of your business if I did or did not get my child’s vaccines. I did what was best for my child and our family.

  1. I am sorry to hear. Why do people say this when they find out your child is autistic? Is it to be kind or because they have a lack of better words? Or plainly speaking they just do not know what to say. Be honest say I don’t know what to say. Do not say sorry because deep down it hurts I know you are trying to be sympathetic for the struggles I may be enduring but in reality my kid is still my child and I am not sorry they are autistic. Everything happens for a reason, I neither you should be sorry because my child has some difficulties. They are still alive and breathing and that’s all I can ask for.
  2. Do you discipline your child? Yes I do discipline my child but certain things are not worth the tantrum or meltdown that they will have. No I do not just let my child run around acting crazy but I also learned as a mother with special needs children there are times and places to choose your battles and if they are not hurting themselves, or hurting anyone else most of them battles are better left alone. I cannot beat the autism out of my child just like you cannot beat the ignorance out of others so don’t roll your eyes in annoyance, instead try smiling and showing some compassion and understanding.
  3. Do not ask if my child is on medication for their “problems”! I do not ask you if you have medication for the inappropriate comments that come out of your mouth so don’t ask if I use medication to control my child’s behavior issues when they are overwhelmed by their surroundings. I do not judge if someone uses medication because most of the time I know parents have exhausted all other options but don’t assume because my child is a little difficult to deal with that they are or need to be medicated.
  4. She can’t be autistic because… People look at your child and may see them as “normal” so they assume your child cannot be autistic. If my child didn’t have issues do you really think I would want to label my child with something like autism? Not that it is a bad thing but people have a tendency of not wanting to deal with autistic kids or thinking of the autism as something negative. My child has been through therapists, specialists, and doctors that found results of autism. I don’t want these difficulties for my child but they are there and I am blessed with a miracle with some special needs, and some even more special strengths.
  5. It’s just a phase they’ll grow out of it. I hate hearing this. Yes some kids go through phases and yes some of them outgrow them. That is not the case for all children. Certain tendencies get worse as they age and others will improve but they will always shave it. It is a lifelong diagnosis. The requirements to meet the criteria for an autism diagnosis are extensive and in depth. Your child must meet these requirements and they are not things that can changed. So No it is not a phase and No she will not grow out of it.
  6. If my kid acted like that I wouldn’t bring them places. The truth is I may not always want to bring my child with autism out with me but they need the exposure to social settings and everyday life. As so I . I spend my days home with my child and I can get stir crazy only communicating with her. I know there is a chance of a meltdown every time we go to the store but I am prepared for the worst while hoping for the best.
  7. How should my kid play with your autistic kid? There is nothing “wrong” with my child that your child couldn’t play with them like any other child. They may have social awkwardness and may not pick up on social skills that other kids do but they play just like any other kid. Also normal developing children are good peer models for autistic children to learn from. They can observe the social skills, and reciprocate their responses.
  8. I heard you can cure your kid by…. There is no cure. There are therapies and individualized educational plans that can help your child be able to function in everyday life more effectively but there is no cure. There is no way to get rid of an autism diagnosis it is LIFELONG. Keep your stories about so and so who had it and now doesn’t and your book that says this and that to yourself.
  9. Are you worried about her future? In some ways yes we all are, but what parent isn’t worried for their child’s future? I feel like I can give her the best tools, opportunities, and and chances at being a “normal” child. She will always struggle with certain things but we will cope with those things as she changes and grows. No I don’t worry about her future. I will do everything in my power to give her the therapies, and help she needs to be successful, she will graduate, she will have a job, and she will one day have a family of her own.

Comments

  1. Oh girl!!! This hits home!! Thanks for putting this out there. All the more info out there about Autism the better.
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  2. Thanks for this, we need to be more aware and stop thinking as a stranger we know better with then the parents. This was wonderful list, thank you
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  3. Regardless of the situation, sometimes it can be so hard to know what to say. Thank you for shedding light on things that people say that can be hurtful, it’s very helpful! I’d also love to know some things that people have said or done that you did appreciate. In some situations, I feel like I should say something, but I don’t know what so I say, so I don’t say anything, which can also be awkward.

    I can also relate to your experiences of letting tantrums go… first of all, I would say that for any child, ignoring a tantrum is typically one of the best responses— but, when in public, people tend to expect to “see,” the parent handling it and don’t realize that by seemingly doing nothing about the behavior, the parent is actually handling it! Two of my kids have adverse food reactions that affect their behavior. I’ve been accused of “blaming it on the food.” However, I know my children well enough to know when the behavior is acting out and when it is food related. Sometimes as mamas we just have to trust that we know our kids!

    • I can relate I know how hard it is to find the right words to say. I tend to tread lightly when in doubt. The best thing honestly is to simply state you do not want to offend anyone but and then ask. At least I know you are not trying to offend anyone and that you truly are curious. I have no problems educating people. I want them to know more about it so that they don’t judge so quickly. Also we have this post here maybe you would enjoy Julie it is things that are OK http://wp.me/p3PVj3-ow

  4. I’m glad to read this because it helps me know how to handle situations that will arise. Just a couple of weeks ago my son and I ran into another mom and son at the park. The little boy was the same age as my son, but clearly could not articulate himself at an average level for that age. Still, he played with my son and happily enjoyed the park just like everyone else!

    • That is great to hear Amy! Sometimes you will see parents not knowing how to handle a child with a developmental delay and they get freaked out and pull their child away from them. That is not what we want. We need to teach our kids to play together despite differences and how to act and speak around other kids who may be affected by something. I am glad this is useful for future reference.

  5. Most people need lessons in common sense and courtesy. Its a shame hat people don’t think before they open it! Thanks for the gentle reminders of thinking before you speak!

    • Yes you would think it would be common sense. Other times I think they just do not know what to say so they get flustered and say the wrong things. Gentle reminders is a great way of putting it.

  6. I have a couple of friends that have autistic children. I know the struggles through them. I would NEVER do any of the things that you listed. Compassion is the main thing that I offer anybody with special needs children. Also, when I was in high school I took a peer tutoring class where I helped the special education teachers. Each and every one of those students that I got to work with were wonderful! They always have so much personality! I hate it when people judge situations where they have no clue or understanding.

    • Well said Jennifer. It is a hard situation if you do not have the experience. I think too many people feel they need to say something. I understand not knowing anything about the situation is hard, and not understanding what they are going through but like you stated have some compassion. It is hard enough dealing with the needs of your child, let alone the ignorance of others. Oh and your so right about the special needs children and their wonderful personalities. My daughter makes me smile everyday from one of her silly shenanigans!

  7. Good post! The things that people feel free to say always amazes me. I suppose they feel uncomfortable but feel the need to say SOMETHING.

    Rachel recently wrote Using the Oreo Cookie to Get Clients

  8. #4 makes me giggle! If only there were medication to stop inappropriate comments! LOL!

  9. Oh dear sweet things that deserve to be licked. I love how you blended your reaction to the comment with the things that shouldn’t be said. It keeps it personal and puts the context around things that shouldn’t be said to you about your lovely child because of the way you will hear it. So get that with so many sensitive subjects in life. I’m curious if all of the above comments are ALWAYS triggers for you or if in some situations (ie, depending on who says it, what tone they use, the full context of the conversation…) the above commentary actually turns in to a really productive conversation/teachable moment? Thanks for sharing a very personal post. I appreciate the perspective.

    • Bernadette, I will say that some comments hurt regardless of who it is but there are some that I have heard from “friends” and I felt more hurt by that then anyone else. Especially the “I’m Sorry” comment. I am not sorry my child is still my child regardless of what her diagnosis is. I wouldn’t say that about your child if they had something they couldn’t change. I guess as a parent unconditional love is a must and to have someone you consider a close friend apologize for it feels like a slap in the face. I can understand if they say “I am sorry you have to deal with the meltdowns, etc.” I believe it would be different but just to say oh “I’m so sorry your little one has autism” kind of stings. If anyone has a question about autism or her behaviors etc. I am an open book, knowledge is power and the more people know about it the more they will understand why she does what she does. The discipline comment is always a slap in the face to me regardless of who says it. I try my best to make my daughter understand but she is 3 years old and does not process things like other children so I try to do things in a manner that she will understand but it does not always sink in. Certain questions may come up from friends and I have no problems answering it. I am not ashamed of her ASD I have no problem talking about our experiences. I just think there are some lines you don’t cross. There is no cure, there is treatment to help deal with everyday life but no you cannot grow out of it, it is not a phase, she does have ASD I would not have pushed so hard with therapist and specialist to get a diagnosis if I thought she was “normal” so please do not pass those judgments on me or my family. I can keep my composure and be polite about it but sometimes I think people really need to think of what they are saying and who they are saying it to.

  10. Last summer we had the privilege of spending some time with friends of my brother and his wife, and one of their children has autism. They are such amazing parents! We spent several hours on a beach together and I loved hearing how several times, very patiently, they explained what all was going on, what had happened, and what was yet to happen. They were so patient & loving. I really don’t know anything about autism except what I just learned from your list and my observations over a couple days spent together. Thank you for sharing what is hurtful, making yourself vulnerable to us.

    • Awe thank you so much April. It is a task to handle sometimes but I find it worst when others think they know what you are going through when they have no idea until it happens to you. Thanks for your support. I think that sharing my experiences helps other get through it.

  11. Thank you so much for so clearly sharing the real truths to the misconceptions many people may have about autism. While everybody’s story is different, you definitely hit on some common issues that both children and adults may experience upon interacting with an autistic child. Blessings to you both!

    • Thank you Wren, I believe like you said we all have our challenges but when it comes to special needs regardless of what type of needs it may be there are some things you should and shouldn’t say. You would think it is common sense but not always.

  12. This list is FANTASTIC! People can be so inappropriate. Raising children is hard! All children! Let’s embrace each other for raising our kids as individuals. There is not a ‘one size fits all’ manual. Congratulations on a great post and on being an amazing parent.

    • Thank you Yolanda! Always makes my day to hear someone who understands. You are very right not everything is “One Size Fits All”!

  13. Great list. Yes, even well-meaning people say stupid things. I heard all kinds of junk like that as a teacher in the classroom. From other parents concerned about their ‘normal’ kids interacting with these ‘other kids.’ Sheesh! I am glad you posted this. I’m sure that everyone will share it so adults can become more aware.

  14. #9 is interesting as my six friends that have/had children on the autism spectrum are always looking for a cure. My children play with friends that are on the spectrum, and we are happy to listen to parents share their experiences. I just find your approach different from those whom we know. As I have heard some of these statements made to my friends, they handle the comments with grace and educate those people on their child’s type of autism. They do not get irritated or sarcastic which helps to calm their child and help others see their side of autism.

    • Tracy, I understand each parent just like each child is different. I personally don’t want a cure. I want my child to be able to function and take care of herself on a daily basis but I do not want to correct her downfalls it is all a part of who she is. I always educate when I am in the situation, I try not to be snarky or act irritated but some of the comments people make would amaze you. I guess it all depends where your from and who your around also. Thanks for your input.

  15. What a great idea to list the effect words can have – so people can see ‘why’ not to say these things!

  16. I’m guilty of some of the things you mentioned, especially #2. I say I’m sorry when I really don’t know what else to say. It’s not the best response to any given situation, but in retrospect, it seemed like a good thing to say. I wish I knew what to say so I didn’t have to offend anyone. Perhaps saying nothing and just listening is a better response?

  17. I’m surprised to read that some people say “it’s just a phase” that one can outgrow. If a child has a diagnosis that he/she has autism, it almost feels as if saying “it’s a phase” diminishes the strength of the diagnosis.

    • Pamela, yes believe it or not they have said that. I think they want to believe that doctors are just over diagnosing. Trust me I am her mom I see her everyday and deal with it EVERY DAY of my life. Do you really think anyone wants that label on their child? It’s really sad how some people think. Thanks for the feedback.

  18. This was a very informative post. While some people are plainly rude, some are just unaware and uninformed about how their words affect other people. I know I have said “I’m sorry” before when I was in a situation like this but I didn’t mean to be judgmental nor did I mean to offend anybody.

    Thanks for sharing, Joleen.

    • Shelah, I am sure you never meant to offend anyone and some people may not be offended by it. I also think it depends on who says it. The truth is I am not sorry my little girl has it. HEr strengths are beautiful and her weaknesses are challenging and we proudly accept the challenge.

  19. People speak before thinking and there’s definitely have a misunderstanding about autism. This is a nice post to educate people on what to say and what not to say. Thank you for sharing!

    • Miranda, thank you for acknowledging that people speak before thinking. I believe they mean well in reality but it does not come out that way when your the parents dealing with it.

  20. Wow! It sounds like you have had to go through a lot. Thanks for this list. It was both saddening and entertaining to read.

  21. “Do not ask if my child is on medication for their “problems”! I do not ask you if you have medication for the inappropriate comments that come out of your mouth so don’t ask if I use medication to control my child’s behavior issues when they are overwhelmed by their surroundings.”

    Very good point!

    In fact all of those points that you made are valid. We do need to be better listeners and keep comments to ourselves….

  22. I don’t have kids yet, but I have spent time around many autistic kids and even done some volunteer activities with them, and it makes me so upset by some of the things that are said either to them, about them, or to the parents, so I can’t even imagine how upsetting it must be for you! People need to do a better job of truly accepting and loving everyone, no matter what.

    • Alyssa I was the same way as you. Working with special needs children. We have to be there advocates also when their parents cannot be. It is exhausting but I am glad to be able to get word out there to others so maybe they can be educated on proper manners.

  23. I’m sure I’ve said things before like that – like “I’m sorry.” It certainly wasn’t meant as anything other than a compassionate response to something when you’re not sure what to say. Thanks for the list and shedding some light on what not to say. It would be great to follow it up with a similar list of things that would be good to say or do. Very informative post.

  24. I learned a lot reading this. Thankfully, I think before I speak but I could totally see myself possible making one of those mistakes, like saying I’m sorry. Thank you so much for sharing this. I hope many, many people read it and learn a thing or two!

    • Well if your going to say sorry Aishah my best advice is… It is ok to say sorry but elaborate. Not being sorry for them having ASD but sorry that they have everyday struggles over the simplest of tasks. I know it is no easy thing and it is much better when it is said with depth rather than just “Sorry”

    • Aishah, saying I’m sorry is ok but be more in depth not a generalized I’m sorry. Like I am sorry for the daily struggles you encounter for such a simple task.

  25. Thank you for an informative, if heartbreaking post, Joleen! I love your honesty and bravery sharing this. My nephew is autistic and honestly, I don’t know what to say except that I know his parents, my step-sister & S-BIL, struggle more than we hear anything about. I’m sure your post will help many people struggling with what to say so they know exactly what to say, or not say. Thank you again!

    • Jill I am sure it is a constant struggle for your step sister and brother in law. It would really be nice of you to ask her what the rudest things people have said to her about her son. It is nice to have someone to share stories of ignorance with. It is nice to vent and if you open that window she will love having someone new to confide in.

  26. This is a great list, and I also enjoyed reading your list on what to say. It is hard to know how to approach a situation when you meet someone who is different than you or your child. We all need to remember common courtesy and not just say something to fill the air. And learning the facts from parents like you helps us do that. You are a great mom to love your child and speak up for her and other parents.

    • Thank You Lori! I try my best I really do and I try even harder to be patient with everyone else. I am sometimes defensive but I try to be productive and educate when faced with someone who is ignorant on their choice of words. Glad you enjoyed the post.

  27. Thanks for sharing what is helpful, and what hurts! I always got a ton of comments in public when my daughter was little and we were in public. I wish I had a blog back then and I could’ve shared what not to say and what IS helpful. My daughter isn’t autistic, but she has auto-immune disease, and one of the physical effects was that she lost all of her hair at 3 yrs. I wish I had money for every person that said “Hi little fella” to my daughter……when she was wearing a beautiful DRESS! I’d be rich LOL People really just don’t stop and think.

    • Awe Carol hope your daughter is doing well these days. I really just think people forget to think before speaking anymore. It is sad sometimes on how ignorant people can be. I bet having a blog before would have been a helpful tool to vent, and share with other parents. Good luck!

  28. While I am sure they know and understand your unconditional love for your child, I think unfortunately many times (not all) people are just well-meaning–even if they don’t use the words or expressions that you want them to. Or they are “fixers” and want to offer whatever solutions they have heard have worked or helped others.

    Someone close to me has a child with a disorder that falls within the ASD. I see the challenges that she has faced. But I think some of the items above really can be legitimate questions if asked in the right way and context:

    #2 & #9 – I’m sorry and worried about their future- any child with any type of special needs is going to potentially have more challenges–even if it is just the potential negative perception that society will put on them. I’ve had this same conversation with the person close to me and uttered those same words, because I am genuinely sorry to see that the parent will have more stress and even more importantly sorry that the child may have a tougher road in front of them.

    #8- How should my kid play with yours– at least with the child that we interact with, the person that I’m close with actually has had conversation with other parents letting them know up-front how it is to best interact with her child. In this case, too much stimulation at once will cause her to shut down and there are telltale signs that precede this happening. By having an open and honest dialogue with the parents, the child’s need were accommodated and it resulted in more productive play before things went south.

    #9- A cure–I know that in the conversations that I have had, we have talked not about a cure, but how to best support the child. In this case it was paying very close attention to foods that she ate.

    I don’t know what you face daily, but based on my closeness with this individual I have a small amount of insight. I guess I just wanted to share that maybe not all the things you have noted above were said with the intent/insensitivity that perhaps you think that they have been.

    Thank you for your informative post because many times we have no idea how even well-meaning comments might be taken.

    • Christina I completely agree not all of it is bad. I do not mind being informative to others like you stated I do think it is in the context of how they say it. It really hurts when they do the eye roll type thing or the huffing and puffing in annoyance with you and your child. That is when it kills us. I am glad you are so insightful to this situation I wish others were.

  29. This would be a hard thing to go through. I am not a parent & could not imagine the comments you get from people. I’m sure it is hard enough to be a protective parent without the odd questions/remarks. Good luck on your journey.

    • Thank you Missy. Even before I was a parent I worked with kids who had special needs as a caregiver. They need advocates whether your a parent or not. Just remember you do not have to be a parent to protect children who cannot protect themselves.

  30. Love #10. I have a special needs daughter and I have yet to figure out how to respond to insensitive remarks. I am usually very calm but inside I’m going postal. Some people just don’t have a filter and don’t know any better; maybe they’ll read this post and realize you’re talking about them. We can only hope.

    • Sabrina I find it very hard to stay calm but I know not everyone has been effected by someone with special needs so I try to stay calm and inform them without going into my defensive mama mode.

  31. It blows my mind to think that people are actually saying these things to you. So many people didn’t learn any manners :(

  32. This is a very informative post! At present, I have not personally met any parent of a child with autism. Reading this post made me aware of the things what to say in case that happens. Thanks for educating people like me regarding this issue.

  33. Great conversation here…it really is hard to know when and what to say. I think just being as sincere and compassionate as possible has always been my best strategy.

  34. I totally get it. My daughter has a severe peanut allergy, and although not the same as autism, I still get the crazy comments. Some grate my nerves – typically the “oh she is one of THOSE children”. One of WHAT children? I didn’t choose this for her, and she didn’t ask for it. People don’t understand. It seems their mouths work much quicker than their head’s sometimes. Great post! I have two friends with autistic sons, and they are both beautiful and sweet and wonderful little boys who I love dearly.

    • Maryann lol wow one of those children. I cannot believe the words people think are acceptable. I am sorry us mama’s have to deal with the ignorance with others sometimes.

  35. I don’t think it’s *always* intended to be rude, people never seem to know the right thing to say. When my husband was deployed, my boss at the time would say things like I’m sure you worry about him getting shot full of holes. Thanks, I wasn’t thinking about that until right now.

    I can’t pretend to know what it’s like to go through life with an autistic child, but I am sure you are doing the very best for them. I wish you all the luck in the world.

    • No Cindy I agree I don’t think it is intended to be rude. I do my very best you can be sure of that. I cannot believe your boss actually said things like that to you. Wow some people have no filters.

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