No Need To Be Sorry And Other Things You Should Not Say To An Autism Parent

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

I remember when Norrin was first diagnosed with autism – the reaction from friends, family, coworkers. Some were really supportive. While others were either in disbelief or dismissive. And a lot of people said they were sorry.

I think the words “I’m sorry” hurt the most. It was as if, I was cheated out of something. It was as if, my beautiful son had disappointed me in some way. Don’t get me wrong, hearing the words, “your son has autism,” for the first time was a kick in the gut. But I didn’t need others to add to my moment of grief. I know people mean well. And so many people say things from a good place. But that doesn’t make it any less hurtful.

Over the years, I’ve heard so many things about Norrin’s autism. But here are just a few things that have been said to me – things that should have never been said. I’m sure many autism parents can relate.

I’m Sorry. There is no need to say “you’re sorry” when you learn someone has autism. I love my kid. I think he’s super cute, funny and smart. Being his mom is the best thing that has ever happened to me – I don’t want anyone feeling sorry for me. Or for him.

How can he learn if he can’t sit still? (Or anything else that questions their ability to learn.) I will never forget the day this was asked of me.  Norrin’s kindergarten teacher asked me this after the second half day of school. Kids with autism do have the ability to learn – do not underestimate them.

You really need to take time out for yourself. Unless you are willing to come over to my house and stay with my kid or pay for a babysitting service please don’t say I need to take time out for myself. I know I should take more time just for me. It’s hard. So if I only get 10 minutes a day to myself – I’m grateful.

You need to relax. I once read that autism moms have stress similar to combat soldiers. That’s some pretty serious stress. And relaxing is easier said than done. So again, the sentiments are appreciated but unless you are willing to help alleviate that stress – you may want to keep that comment to yourself.

Are you sure he has autism? He looks so normal. Never question an autism diagnosis (especially if you know nothing about autism). Ever. There are so many people who still question Norrin’s diagnosis – especially when they see a picture or hear me talk about him. And I can’t tell you how many people questioned me when Norrin was initially diagnosed. Autism doesn’t look like anything.

Are you going to have another kid? This actually works two ways. People ask if I’m going to have another kid as if having another baby will make up for my kid with autism. The week Norrin was diagnosed with autism I had four different people tell me I should have another baby. Not really the words I wanted when I was trying to figure out this new world of special needs parenting.

And then there’s: You’re not going to have more kids are you? I’ve heard that too and it doesn’t feel so good. It’s as if having a special needs child is so horrible that the possibility of wanting another child is absolutely out of the question. My personal rule of thumb is – I don’t ask people about having/wanting kids. I don’t ask unmarried women, I don’t ask newlyweds, I don’t even ask people who have kids.

I know it’s hard for some people who don’t understand autism to get why these things can be hurtful. And some people just don’t know what to say. That’s okay. Sometimes taking the time to listen and understand is the best thing you can do.

 

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  1. by Sabz

    On November 7, 2012 at 9:02 pm

    This is very very helpful to people that don’t know anything about autism or mothers of children with autism. great read <3

  2. by Xenia

    On November 7, 2012 at 10:39 pm

    You can’t even imagine how good an article this is for someone like me that has no clue about autism. Thank you so much for writing it and sharing – I think I might know how to act now.

  3. by Ruby

    On November 7, 2012 at 11:04 pm

    Amiga this is a great post! I think some people dont think about what they say before they do. I love that you are sharing this with us. I look forward to more!

  4. by Melissa

    On November 8, 2012 at 2:15 am

    I am glad that you wrote about this. Some people are just really ignorant and don’t watch what they say. This post is helpful and helps to give us a little insight into what you have to deal with. Hopefully, it will educate those that have not had any contact with a parent of a special needs child.

    Thank you for sharing! :)

  5. by Jo-Ann

    On November 8, 2012 at 9:14 am

    YES YES YES. Thank you.

  6. by Lesley A Ocana

    On November 8, 2012 at 11:59 am

    The two of you have accomplished so much…I am so happy that you are writting about Autism….this is a way to better educate people.

  7. by Meidi

    On November 8, 2012 at 3:59 pm

    I’m still confused about why it’s wrong to say “I’m sorry.” If I were to find out that a friend or relative’s child suffered from any disorder or disease (and of course this has happened already, I have a wonderful nephew with autism), my fist impulse is to say “I’m so sorry, is there anything I can do for you?” It’s not intended to mean ‘I’m sorry you have a defective kid’ or “I’m sorry your child was born’ or anything horrible like that, it’s “I’m sorry that your great little kiddo has some obstacles to overcome.” When my daughter was in the NICU very ill and my husband lost his job (same freakn’ day!) many people told us “I’m sorry,” and I never took it as ‘I’m sorry you had a defective baby’ or anything else rude, I knew that they just wanted to express their sorrow that our little family was going through some tough times.
    It’s important for you to know that the world is not against you, most people are not mean and do not intend ot be rude, your son’s Kindergarten teacher was probably expressing her frustration with feeling like she couldn’t properly teach your son because she couldn’t get him to sit still, if she is anything like the wonderful public school teachers my kids have had she was just trying to figure out HOW she could teach your child, while still doing all that she needs to do for all the other children in her class, it is a difficult balancing act.

  8. by Lizbeth

    On November 8, 2012 at 6:30 pm

    Well I think there is a difference when a person says, “I’m sorry,” in relation to being sick, having surgery or something of that nature.

    I’m a mom to a child with Autism, as well as being on the Spectrum myself and when someone says, “I’m sorry,” in relation to having Autism it can feel like there is something wrong with him, or with me. And that something is not something that can be cured or fixed with surgery. So, in that respect, when someone tells me they are sorry it feels like they are sorry for my condition or my son’s condition and it’s just the way we were born. We can’t be changed and being sorry for the way we are implies a negative, like we are less than normal.

    It is a difficult balancing act and I do understand where a person comes from when they say they’re sorry. I try really hard to look at the intent. Usually a person means no harm but it can have a negative effect, especially when my son hears someone apologize for him just being him.

    So I hope this brings to light a little bit of why it can be a difficult to hear an “I’m sorry.”

  9. by Bil Hooper

    On November 8, 2012 at 6:56 pm

    Right, Lizbeth.

    I get what both Lisa and Meidi are saying; Meidi, I don’t think Lisa is being a “word cop”, she’s just pointing out that how we are accustomed to expressing empathy, might be received in a way we didn’t intend.

    I understand this: Sometimes, I just want someone to notice how awesome my child is, despite the fact that he struggles.

    Let’s say I tell 10,000 people my son has Autism. If every person’s first response is to simply say “I’m sorry”, it’s actually going to make me feel terrible, as if I have to comfort someone else or that I need to be comforted. I’m probably going to feel pretty terrible about my son’s chances for being noticed for something other than his Autism.

    I would just die (in a good way) if someone just went completely off script and said something kind, positive, or insightful.
    “I’ve noticed how enthusiastic he gets about stuff. I like that about him.”
    “What sorts of things does he enjoy?”
    “What is his Autism like?”
    “Would he like to come over and play Wii with my kids sometime?”

    Thanks for reading. :)

  10. by Crissy

    On November 13, 2012 at 5:29 pm

    This a great article, that goes for any special needs. I have 2 special needs kids (ADHD & cerebral palsy) The 2 things I hate the most is the “I’m sorry’s.” and the “Are you sure?s”
    1.It’s not a tragedy, it’s a fact. You don’t apologize if someone has a baby with blonde hair rather than brown hair, light skin rather than dark, brown eyes rather than blue, a boy rather than a girl. So for a special needs parent you don’t need to apologize because our baby didn’t come out how we guessed they would.
    2. Of course we’re sure. We have gone to many, many,(MANY, MANY, MANY) specialists who diagnose special needs for a living, and went to a lot of school to get that job Those specialists have probably performed many tests and evaluations on our children before giving the diagnosis. And before we started seeing these specialists, their pediatrician had to refer us to them which means they saw irregularities/delays/red flags. And USUALLY in order for that pediatrician to see these things the parents had to notice them and bring them up as questions. And the parents usually saw it for a while thinking it was a phase before they ask the pediatrician. So usually for months or years there are red flags before a final diagnosis is given. So yes we’re sure our child has a special need. (And of course my child looks normal, he IS normal, he just also happens to have a special need)

  11. by Claudia

    On November 13, 2012 at 7:05 pm

    My sisters older child was diagnosed when she was 15 months old. I really thank you for this article. My mother and older sister have had a “difficult” time accepting the diagnosis. Still are. You know what I think? After every wrong comment that could have come out of my mouth, I learnt to listen… She ADORES music and is totally in touch with her feelings. I see a strong child and a strong and adoring mother of 4 trying (along with her husband) to make everything work. My oldest (she’s 5) simply loves her cousin, she asks why she suddenly stops paying attention to her and I try to explain to her what autism is , and this aricle has enlightened me. Thank you and may God bless you!!!!

  12. by Maria

    On November 13, 2012 at 9:05 pm

    Aut

  13. by MAria

    On November 13, 2012 at 9:10 pm

    Autism is a disability. It cost me over 10k to care for my son with ASD this year alone, not to mention lost wages and the toll on my wellbeing and my relationships. I love my son more than my life, but you bet I’m sorry he has autism!
    It’s a disability. Not an idiosyncrasy.

  14. by Mary

    On November 14, 2012 at 1:15 am

    Your info that you have posted is awesome I have a son that has Asburgers and I like you hate it when ppl tell me that they are sorry.. I have a lot of family that just won’t accept this and that has made it harder on me. I thank God for my sone every day and every day that I am lucky and I get a hug or I love you mom are my brightest days tht I have which mean the world to me.. your article is informative and I will be passing it on to some that I think really need to read this..
    Thank you again so very much God Bless
    Mary Walls

  15. by Emily

    On November 14, 2012 at 7:54 am

    My 3 yr old also has.autixm we have had to battle family who doesn’t believe it, the one million im sorry s you get, even one lady went off on how horrible autism is and hes going to have the most miserable life and she even added there should be a test done while pregnant so you can abort it if its autistic. The family issue made me upset like where’s tne support we need? Everyone saying they are sorry im lile dont be but thats why he doesnt talk and has random outbursts. This lady on the other hand made me cry…. Im like how dare she! My son is soo happy has a great life and truley is the best thing to happen to me. His autism is aosy a blessing… he is 3 and starting to talk some… But he doesnt see bad in anyone. He doesn’t see race, gender, brand name clothes (kids in his preschool do!) If another child smiles at him he will play with them. He doesnt understand issues mommy and daddy may be dealing.with he just laughes and wamts to play. We do have vsry difficult times but all the small moments ppl take for granite we cherish. I cried when he said mommy and learned to petal a trike because these are obstacles for him.

    Thanks for the post….

  16. by jessica nellis

    On November 14, 2012 at 8:40 am

    I have never taken my son in to be tested but I have thought about it a lot. My son’s kindergarten was sweet and took the time out to get to know him( which helps him excel more than other things), but when the last day came around she shared the thing that stood out most to her about each kid, for my son it was has much he got in trouble. People have questioned his ability to learn because he’s up and touching and looking at things, jumping from thing to thing or listening with his eyes glazed over. Quite a few people just give me the impression they just think he’s bad. I know better though. I know although he may be difficult he is a bright and caring boy. I know that in the right environment he doesn’t want the learning to stop, he just doesn’t want to sit down to get it. He loves museums, books, movies and programs on the computer that he can jump forward at his own pace or figure it out on his own and he likes to be able to master some skills before he performs them in front of other(like reading and writing). I’m so grateful for the people who “get” him because then the best comes out. It seems as though the expectations that some have for him is what they see no matter what.

  17. by Marc

    On November 15, 2012 at 10:49 am

    I’m an at-home Dad of a spectrum child and appreciate your point-of-view. I wonder if I don’t get some of these questions because I’m a Dad (I hear a lot more Moms say that they have their parenting questioned than I hear of Dads.) While I’ve never fielded any of these questions / comments, the one I want to primarily agree with is: Don’s say you’re sorry. If there was a pill that would JD’s autism away, would I give it to him? I don’t know because that may change the person whom I’ve loved from the moment he was born through the moment I was told he was on the spectrum. No label can tell me who my child is, though it can help understand and work with certain characteristics. Thanks again for your thoughtful editorial.

  18. by Kathi

    On November 15, 2012 at 5:38 pm

    Thank you for sharing your thoughts! ASD is an INVISIBLE “disorder”! Several people have questioned me about my son’s diagnosis. Seems his behaviors are volitional! They’re NOT!

  19. by Sofia

    On November 15, 2012 at 7:46 pm

    My 4 yr old is hard of hearing. She wears hearing aids since she was 4 months old. This is also a disability and I too have gotten “I’m sorry”. I do appreciate the “I’m sorry” because I am sorry as well. Does that mean that I think there is something wrong with her? Absolutely not. People might be ignorant but they are not evil. All the things you mentioned in this article that people tell you to me are valid things to say. It is up to the parent for this things not to hurt. Truth is that the “perfect” thing to say does not exist and that its up to you how you take it instead of assuming, reading in between the lines or putting words in people’s mouth. When somebody says “I’m sorry” is because they care. Take it as an act of kindness as opposed to a hurtful thing to hear. Xoxoxo.

  20. by Kelly

    On March 21, 2013 at 10:42 pm

    My heart is so broken tonight once again, because once again my son cried himself to sleep because kids are picking on him at school. There needs to be education on autism in schools because I’m so tired of watching him hurt.

  21. by TONI BARCA

    On March 25, 2013 at 6:41 pm

    I love your article and I’m puzzled over the people who can’t understand why you would rather not hear,”I’m so sorry.” My son has autism not Leukemia(knock on wood)–

    He’s not a lost cause, he’s come here to help people get out of their belief systems of what it is to be normal. He actually thinks outside of the box(unlike others who have trashed that term to a senseless term)- He ‘s actually quite brilliant, sensitive, creative, and loves to invent new concepts like he once did a collection of art based on Nanobots- One Nanobot was to be used as a medical device to destroy cancer cells. I recall thinking, awwww.. that’s so cute. Today, scientists are exploring the ways to create nanobots for that very thing. Imagine my surprise.

    So saying, sorry to me because my son has autism, is actually insulting. How about saying, he must be brilliant! I kid you not even the non verbal kids on the spectrum are untapped gold mines- WE just haven’t understood how to mine their brilliance yet.

    Thanks for your insightful article, it spoke for me and touched my heart-

  22. [...] love Norrin, I am not sorry that my son has autism. The only thing I am sorry about is that I waited to get him the help he needed. Don’t make [...]

  23. by Autism Is Not A Punishment From God | To The Max

    On January 29, 2014 at 7:23 pm

    [...] When I first started telling people Norrin had autism, many expressed how “sorry” they w… As I’ve shared my story people have asked if I wanted a cure for Norrin or if autism could have been prevented. And once a coworker referred to Norrin as “sick.” Autism isn’t a disease in need of a cure and Norrin isn’t sick. In fact, he’s probably one of the healthiest kids I know. There are so many misconceptions about autism as it is. Some I can shrug off but autism as a “punishment from God” is beyond insulting. [...]