September 30, 2015

Dear Know-it-All Mom: Yes, My Child Actually is Autistic

Since I told you my child is autistic, you've turned into Professor Sanctimommy McKnowItAll. While you pretend to be supportive, say you know all about and have experience with autism, and claim you're not judging, your backhanded, know-it-all comments have given you away.  Obviously, you don’t really understand that, like children, not all special needs are exactly the same. Especially when it comes to autism spectrum disorder.

Yes, my child is autistic

Sorry, not sorry, that you don't understand that symptoms aren't obvious 24/7 365 and that there are are some good hours or days among the bad. (Even though you claim to know all about ASD.) Kids don't have to constantly be raging terrors to have issues. It's a bigger picture kind of thing here, and you're not seeing the bigger picture. I also am under no obligation to give you all the details so you can (maybe) see that bigger picture. It is none of you damn business.

You may not see what the professionals and we, as her parents, see. That doesn't make you right. It means you aren't an expert or someone who knows what to look for. Unless you're around my child as often as I am or have a qualifying degree, stuff it.
When it comes to Facebook, I'm allowed to post when my child does well and makes some progress. Contrary to what you seem to think, you can say good things about your child even when you're struggling to accept a difficult diagnosis. I refuse to bash my child publicly or ignore her existence on social media. What I do post on Facebook doesn't give you the right to claim I'm lying about the diagnosis.

It takes all my inner strength and resolve to not ream you a new one every time you argue with me, trying to claim that my child is fine, all kids do what she does, or --even worse-- that she's just a brat. Let's not even go there about your comments about it not being my child at all, it's just me being a bad mom who doesn't want to face up to that fact. That just would not end well for you.
Yes, my child got a diagnosis fast. No, that doesn't mean that the doctors are wrong/not good enough/I'm lying/whatever crap you come up with. It means that my child's issues were just. that. obvious. to someone who knows what the heck they're talking about.

By the way, my getting help doesn't make me a bad mother. I want my child to have all the help she can get in order to have the happiest, best life she possibly can. That's so nice that another mom you know with a special needs kid never got help or even considered it. It's her choice, I'm sure she's doing what she thinks is best. The same that I am.

Finding out my child has special needs isn't something you should be congratulating me on. The diagnosis is a devastating thing to hear. Having an answer and knowing it's not all in my head is wonderful. On the other hand, being told it's all in my head and that I can just do XYZ to make her life better would be even more wonderful. Her issues aren't going to go away. There's no out growing it (yeah, you're wrong on that count, too). Having a special needs child isn't cool or fun. Knowing your child is struggling and will struggle throughout her life rips out your heart. Please don't minimize that and act like this is something that I wanted as you accuse me of lying about it in the next breath.

By the way, lying about the diagnosis? Why would I do that? I could show you all the paperwork with the evaluation and diagnosis. Could, but I won't. Because it's none. of. your. business. My child's medical records are private, not for you to gawk at.


Telling me, "Oh, it could be worse," trivializes the struggle my family, especially my daughter, is going through and will continue to go through. The situation can always be worse, that doesn't mean our struggles aren't real or important.

My child being diagnosed as special needs doesn't make what you go through any less difficult. It doesn't effect your life. Yet, after lacking any understanding and being totally unsupportive, you tell me, "I just can't deal with it." You just can't deal with knowing my child is special needs? Well, I just can't deal with your attitude. No parent should have to defend their child, themselves, or their child's diagnosis.

At the end of the day, my child is still the same wonderful, amazing, awesome person she was before the diagnosis. She's got you beat in spades, Professor.

To find out how everything mentioned in this post turned out, read my follow up here.

Read more about our journey with autism here.


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26 comments:

  1. Your child IS the same wonderful person, no one or any comment should ever take that away Great Article

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  2. Nobody, not nobody, understands the struggle and everything that goes along with autism until they have experienced it him or herself as a parent.

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  3. Ugh. I'm so sorry you have to deal with all this ignorance . You are a wonderful mom doing your best for your daughter. Big hugs momma .

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  4. Being a mom is not easy. Your daughter is so beautiful! Stay positive and be happy

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  5. Your such a great mom for your daughter and you are doing the very best for her.

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  6. If people don't know, they don't know. If they have never had to deal with it, why would they? Maybe you could explain it to them so they know for next time.

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    1. The things this person has said shouldn't be said, though. I've gotten interrogated (the person even asked to see my daughter's private medical records!) and told my child can't possibly be autistic because she doesn't fit with the picture this person has in their head.

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  7. Well that person got told! Understand your frustration and hope this helped you relieve some of the angst. Judgement is never helpful! :(

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  8. We all face these challenges differently and no one should be judged so long as they are facing the issue head on and with good reason. I'm sorry you had to read or hear comments like that. You should be proud of yourself and your daughter.

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  9. This is a wonderful post. Stay positive :)

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  10. This really puts it in perspective for those who haven't been there. I can't pretend to know all you go through, but I imagine you deal with it in stages like those grieving do. You said a wonderful thing about it at the end too -- she's still the same girl you've loved from day one!

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  11. Having a special children is not easy :-( my son has ADD yet we still loved them unconditionally.

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  12. THIS is exactly why I never offer unsolicited advice or anything! I'm sorry you're going through this :/ But just know you're doing an amazing job!

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  13. Oh Wow!!! This post gave me chills and hit home on SOOO many levels. My oldest hasn't received a diagnosis yet, but honestly, the ONLY reason I'd want one is so we can get her into the proper therapy and help. It is HELL when people you think "should" get it, don't and then they try to act like they do. BIG HUGS to you, and your family, you are doing it right mama :)

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    1. That's the big reason we had M2 diagnosed. Without the diagnosis, she couldn't get the therapy and other services she needs. Just having that piece of paper with a diagnosis opens so many doors.

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  14. I wish I could give you a round of applause!!! This is so well written and is probably what SO many moms of kids with special needs are just DYING to say.This should be published. Really, it should. So well done <3

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    1. Thank you! This was one of those posts that you're "not supposed to say" yet I couldn't keep it in anymore.

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  15. Your daughter is beautiful. Stay positive and things will turn out right. I don't know why some people can leave comments like that. I would like to tell you not to mind them, but I know it hurts. Just keep on doing what you are doing, you are a good mom.

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  16. No one should ever say "Oh, it could be worse," that DOES minimize - my daughter was diagnosed with "Mild" Cerebral Palsy when she was very young but not soon enough because I spent 3 years with a doctor who said she would "grow out of it" I would like to tell him now how neurosurgery saved her life but yet she still has CP - it won't go away. She still struggles, has balance issues, falls flat on her face for no reason at 20 years old. I could go on and on about it, just as I know you could with daily struggles. To me, I think there is nothing "mild" about her condition even though sure, she could have been not just physically but mentally damaged, which is why they called it "mild" however they also do not realize the mental struggles she faces and has faced dealing with having a disability at all. The struggles finding and keeping a job she can physically manage for example have caused her mental stress and disorders and so on and on and on. Shame on the person, or people who disregard what you, your family, and your child are going through. Stay strong, block that person forever, I don't care who they are. They don't deserve to have their say to you.
    Blessings and hugs!

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    1. Thank you for sharing this! Our kids struggle so much, having others minimize it when we know they are hurting so much is infuriating. It sounds like your daughter is a determined young lady! Please let her know I'm thinking of her and rooting for her! :)

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  17. Ugh! Sounds like a person you don't need in your life. Sorry you have to deal with the negativity.

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  18. I have a friend with a special needs child and I don't begin to know her story and I know that she is doing what is right for her daughter.

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  19. You are right in saying that you know your child the best. Others when you them the diagnoses just assuming and it is not right for other to assume anything when it comes to your child. Every diagnoses is not the same and I hope you understand what I mean by this statement. Thanks for saying what on your mind.

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Thanks for taking the time to leave a comment. As a busy mom, I'm not always able to respond to each one, though I read and appreciate them all.