A couple months ago, I had a conversation with an acquaintance. We hadn’t known each other for very long, but we had common interests and enjoyed each other’s company.
She knew that my son had an autism diagnosis, and felt comfortable talking with me. She told me her son was just diagnosed as well.
Before I could think, I said, Oh man. I’m sorry to hear that.
As soon as the words passed my lips, I knew it was the wrong thing to say. She gave me an odd look, and I immediately started to backtrack.
This type of blunder is nothing new to me. I’ve never been good at politically correct language. But nevertheless, our conversation has weighed heavily on my mind.
What I said is true. I am sorry to hear that her son was diagnosed with autism. But not because autism is such a terrible condition to have…
I’m raising four children. And all of them have issues. Two of them recently caught Teenager, and may not make it through the week if their attitudes don’t clear up.
Autism is just a tough issue to navigate. And I know some of the feelings she might experience in the months to come.
So when I said, I’m sorry, this is what I really meant…
I’m sorry your child was diagnosed with autism…
I’m sorry that you will start researching your child’s condition, only to become more confused than you already are.
I’m sorry there are more questions than answers.
I’m sorry that you will feel the need to become a geneticist, neurologist, psychologist, gastroenterologist, and a lawyer all at once.
I’m sorry for the feelings of guilt and inadequacy you will experience.
I’m sorry your insurance won’t approve the treatment you’re seeking, and that you’ll have to fight tooth-and-nail to get the services your family needs.
I’m sorry you will feel alone sometimes, because you think nobody understands what you’re going through.
I’m sorry you will lie in bed some nights and wonder what more you could you could be doing.
I’m sorry that rude people will stare at your family when you go out to enjoy yourselves.
I’m sorry that autism awareness isn’t the same as autism acceptance.
I’m sorry that, at some point, you will find yourself trapped in a never-ending debate on vaccines.
That’s what I meant when I said, I’m sorry. But it still wasn’t the right thing to say.
It’s not my job to dump all of that negative energy on mom who’s just starting her journey through the spectrum. It’s my job to smooth her path.
Now that I’ve had some time to reflect, I know what I’ll say the next time:
Thank you for sharing that with me!
How are you feeling about the diagnosis?
This will open so many doors for your little one. Let me know if you have any questions.
Here’s my number. Feel free to call or text me anytime.
Our area has a wonderful support network, full of parents ready to help each other. I’d love to introduce you to some of them.
We have parent meet-ups and family events all the time. I’ll get you on the mailing list.
I’m here for you, anytime you want to talk.
Welcome to our tribe.
Thanks to Purple Plumeria Photography, Chris, and Brooklyn for the featured photo!
perfectly said! I don’t take offense if someone tells me they’re sorry about my son’s diagnosis, but I know many do.
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I don’t either, but it just didn’t feel right when I said it. Thank you for reading. ❤
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I don’t either. I know they’re just expressing their concern for me. I’m just trying to become more aware of my own words. Thank you for reading and commenting. ❤
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I know what you mean. I love your answer: “Thank you for sharing that with me.” I’m going to use that one, as well.
I had people tell me that they were sorry when they found out that my daughter has ASD. I am not sorry. And I tell them right away that I am not. That usually comes out of my mouth faster that I can stop it and it has caused people to feel more uncomfortable after I had told them that I am not sorry than when they told me that they were sorry.
I think the whole confusion comes from the fact that people do not really know much about autism. Everybody pictures a child rocking uncontrollably, unable to speak, screaming and throwing tantrums, and things like that. And everybody feels uncomfortable when I tell them my daughter has ASD. There’s nothing I can do about their feelings. But I can do a lot of things about my feelings. And I am not sorry she has autism. With all the bumps on the road we face as parents of a child on the spectrum, my life has been enriched since my daughter was diagnosed. I cannot imagine my daughter without ASD. But all children with ASD are different. ASD is different for everybody.
I dream of the day when people do not give ASD a second thought, like we’ve done with many disabilities. The one thing that hurts me the most is the stares. My daughter does not stim that much. But when she does in public, the stares are disgusting.
Thank you for sharing this post. I really liked it.
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Thank you for reading, and for your feedback. It’s such an awkward conversation to have when you don’t know exactly what to say. ❤
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Indeed!
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Great suggestions for responses.
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Thank you! I’m sure they were taught to me from someone. 🙂
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Expressing sincere concern is nothing to apologize for. How other people receive it is ultimately none of our business. I love and will fight for my son until I die, but autism is no picnic.
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Everything you said is so right. I’m just trying to become more aware of my own words and their meanings. This is such a sensitive topic for parents. Thank you for reading and for your comments. ❤
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it’s beautiful that so many people have gathered together and solve problems together
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So true! Thank you for reading! ❤
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A great article and I enjoyed reading it!
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Thank you. And I’m sorry it took me so long to respond. ❤
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My dear, I’ve just finished the translation of your so touching post.
Reblogging it right now.
With all my love
Vicky
❤
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Here’s the link to my blog:
https://vincenza63.wordpress.com/2018/03/04/autismo-una-mamma-americana-racconta-2/
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“Autism awareness isn’t the same as autism acceptance.” You can’t get deeper than this. My salutations to you, mom-warrior!
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Thank you! ❤
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Beautifully written! Virtual hugs momma.
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i certainly agree with your post. This is so true. Hopefully I could start writing our Journey with my toddler soon
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Don’t wait. Just do it. And let me know when you get started. ❤
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Hi I have started writing some articles about my son. Hopefully I will be able more articles in the future. Thanks for the encouragement..:)
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Thanks for letting me know! ❤❤❤
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Autism is an entire different story in Ghana, West Africa. Almost every parent of a child on the spectrum would want to transform his child to become like the next child because most of them do not understand it. Many of them think of it as an evil spirit even. There absolutely no taking offense when you say sorry. They’re totally not in the place of acceptance and I’d rather say sorry for the autistic child in Ghana who feels alone and unaccepted all his life
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I’m sorry it took me so long to respond to your comment. It pains me to hear how people with autism are treated in Ghana. Please let me know if you would like to write an article for my site on this subject. I would welcome your insights. ❤
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It is a sensitive subject but its a subject worth talking about. My son has Autism and it really isn’t a walk in the park. At times it seems that even he doctors themselves don’t want to be transparent on the subject. Thank you for being honest, appreciate your post.
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Thank you for reading. It’s unfortunate that there isn’t enough consensus among professionals. Each one seems to have their own opinion about autism. ❤
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I fully relate to this. When I tell people my daughter has autism they often say ‘I’m sorry to hear that’ and it is just something people say, but like you I know the struggle in learning about it, fighting for the support etc so completely get why you said it and what you meant by it.
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Thank you, Katie. This autism journey can be hard sometimes. But it can also be wonderful. Maybe next time, I’ll respond more positively. ❤
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Thank you, it was very insightful, I probably would’ve been quick to say “sorry” too.
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This was such a great read! I am currently fighting for a diagnosis for my seven year old who really struggles with social boundaries and emotions. I don’t know what’s worse, researching his symptoms prior to getting a diagnosis or the day he gets a diagnosis (when that day comes) or the day it comes and researching even more. It drives me insane and I lose so much sleep thinking I could be doing more to help him! This post really brings it home for me xxx
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Hello! My names Mia and I’m 13 years old with Autism and ADHD. I’ve just started my own blog for Autism and I was wondering if you could check it out and leave some feedback? If you could then I would really appreciate it. Thank you!
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I love the list of responses you developed! Autism is not something to be sorry about, unfortunately there is a lot that comes with it that isn’t always easy. Having a supportive, non-judgmental hand reach out is worth more than its weight on gold!
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