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12 Things NOT to Say to a Mother of an Autistic Child

4/9/2015

14 Comments

 
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For many years, after hearing The A Word, I still had trouble actually saying The A Word. And forget about me EVER uttering THAT word in the same sentence with the words, "Ryan" or "my son". Nope. Just couldn't do it. Denial stood right next to me and every time I thought I was ready to say, "My son has autism", Denial would clamp her hand right over my mouth, and AWEnestly, I would let her.

So yeah, even though for months I was able to summon the words, "My son has autism" to the very tip of my tongue, it took a while for my heart to catch up. Once I was finally able to remove Denial's hand from my mouth and no longer tremble when saying The A Word, it didn't take me long to discover that people had almost as difficult of a time hearing me say, "My son has autism" as I had saying it.

When you say, "My son/daughter has autism" people don't know how to respond. Most folks know not to say, "Woohoo!" and high five me, so many people almost become autistic themselves. They fumble for their speech, they turn their gaze away, they make horrible social blunders, and then quickly try to escape an uncomfortable situation.

We get it. We know you are at a loss for words. We know you don't know what the right response is. We know you feel awkward, unsure and really, really wish you had never stared rudely and commented on our child's behavior, but, once the cat is out of the bag, you can't pretend you didn't let it out. And neither can we.

So during this month of Autism Awareness, I thought I could help those dumbfounded, awkward, at a loss for words people out as much as I could. Seeing as how every situation is different and every child with autism is different, I may not be able to tell you exactly what to say, but, I can give you some helpful hints on what NOT to say.

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1. "But, he looks so....normal?!" Umm, ok....thanks? I'm not exactly sure what "normal" looks like, but, I think my kid is gorgeous.

2. "Are you sure he's autistic?" Yes, yes, I'm sure. I realize if he isn't spinning, flapping, asking to watch Judge Wapner or yelling, "Bazinga", he may not seem autistic to you, but, the 200 specialists we have seen, trying to reassure ourselves of that very question, confirmed that he is indeed, autistic. 

3. "What do you think caused it?" We don't know. We wonder, we question and we agonize over everything we did, everything we ate, and every place we went while pregnant. We spend countless hours blaming ourselves, the environment, genetics, etc, then we finally realize, what caused our child's autism isn't nearly as important as what we are doing to support him. We want you to realize that too.

4. "Ohhhhh....what can he DO?" I said, he was autistic, not a circus monkey. We realize that there are misconceptions that all autistic people have some sort of exceptional ability, and although some do, most do not. So when you ask a mother this, not only does it reinforce that her child is "different" in the neurotypical world, it makes her feel like her child is "different" in the autistic world too, so just don't. 

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5. "Maybe if you just provided him with some discipline." Duck. If you are stupid enough to say this, then either wear a face mask or duck, very, very quickly. Autism is not caused by poor parenting or a lack of discipline and what you are witnessing is NOT a temper tantrum. What may look like an "I'm not getting my way tantrum" is a sensory meltdown by a child who cannot tell his mother what is hurting him, how he feels, and how to help him. This inability to help our child already feels like a punch in the gut, don't add to our pain with your ignorance and judgemental crap. We will hit you, so seriously, duck.

6. "I try to talk to him, but, he always ignores me. Maybe you should get his hearing checked." We have. He is not deaf. He hears you. He sees you. He knows you are there. Just like he knows when you don't see him, when you don't hear him and when you give up on him. Just because he does not speak to you, does not mean he isn't trying to communicate with you. If you say this, hopefully, the mother will say that.

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7. "Maybe he just likes to be alone." He may "prefer" to be alone, but, that doesn't mean he "likes" to be alone. Being alone is easier than trying to understand facial expressions, body language, and conversations that are difficult to understand. Watching them be alone hurts, having people assume they "like" being alone, and letting them alone, hurts even more.

8. "He's not thaaat bad." I didn't say he was bad. I didn't say he was broken. I didn't say how he sees the world is wrong. I said he has autism. "Different" is not "bad".

9. "He'll eat when he's hungry." No. He. Won't. (Duck again). And let me ask you, would you test your child with this theory? Would you wait him or her out for days and days to see how hungry he gets before he will eat what is put in front of him and not the food his sensory system tells him he needs? Stupid. Hateful. Stupid.

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10. "You are so...(insert amazing, brave, strong, loving, etc here)." No, I'm not, but, he is.

11. "I'm sorry". Don't be, I'm not (most days).

12. "Will he always be like THAT?" Will he always have autism? Yes. Will autism always impact his life in some way? Yes. Will he always see the world a little bit differently? Yes. Will he continue to grow, live, love, and find joy while teaching me to see his world? Yes. And that's why we don't want you to be sorry.



Saying The A Word is hard. Responding to The A Word is hard. Educating yourself about The A Word is not. Thanks for taking the time to do so.
14 Comments
Sarah
4/14/2015 09:54:47 am

Okay, so help me out here...what should I say?

Reply
Juie
4/14/2015 12:34:44 pm

Hello. How are you today? What is your name? How old are you?

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Sarah
4/15/2015 06:44:20 am

Okay, so I get that you're saying that I should just talk to the kid (well, I'm assuming that's what you're saying as I don't usually ask other moms their age), but if a mom is telling me that their kid has autism, should I just not respond out of fear of saying the wrong thing?

My dear son has sensory processing issues and a host of initials. I've had all kinds of whackadoo things said to me about my unusually-tall-for-his-age and chewy-flappy-bang-into-things boy. He's my son, and I love him dearly, and am also in awe of all that he is, but if I'm mentioning his diagnosis to someone it is usually to help them understand something about his behavior or how he is processing the world. There's usually some conversation involved, even though it might be awkward, and the person may stumble around a bit, I choose to see them as being good-willed.

I think I get at what you're saying about the 12 Things NOT to Say, but I challenge you to find 12 things that you would love to hear about your child. What are things that others can say that would be an affirmation/encouragement of all that your child is, and all that you are as their mother.

Kate
4/15/2015 06:53:03 am

Hey Sarah, thanks for asking, I'm working on a few to post tomorrow!!

Reply
Hm
3/27/2017 07:13:21 pm

I thought yhe same thing?
I would be pretty nervous to speak

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Doug
5/13/2015 10:02:26 pm

I can see how those comments would be hurtful to the mother of the child... Perhaps, just a simple, "Okay... Can I help with anything...???" would be more appropriate...

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Tom Willumsen
5/14/2015 12:24:19 am

My beautiful grandson is part of the spectrum. He has brought so much meaning and joy to my life. What a beautifully and intelligently written blog.

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John Stuart
5/14/2015 12:50:35 am

I have genuine empathy Kathy. Thanks for writing this!

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mildred n romero
5/14/2015 03:53:12 am

congratulations on yourarticle!....I am the moher of a 23 year old male autistic wonderful person...In my opinion is better not to say anything about the diagnosis unless yor ready to explain it to the person so that the awkwardness be eliminatedk!...if your ready for that go ahead!...also you have to realize how much time you have with that person, especially if they are taking care of customers.....So use your judgment!...

Reply
Michelle
5/14/2015 05:33:00 am

I only just came upon this article. There is so much information, and MISinformation, now. Back when I was trying to get help for my now 27 year old, ADHD & Aspergers (high end of the spectrum), son, it was like pulling teeth from a duck!
I/we went to 12 "psycologists", and 6 different doctors. Only way I could get information was the library. I heard everything from "you need to spank him more", "You're seeing things", "he's just energetic", "you had a sickly child first, and you can't handle a normal one", and my personal favorite, "he's just all boy". I couldn't get help for him, until the school lost him! (In kindergarten)
You never hear about the older ones. And how much trouble we went through. He'll never hold a full time job, and most likely will never be able to live on his own

Reply
Wolf F. Dunaway
5/14/2015 11:38:08 am

I am a 55 year old autistic man. I was diagnosed with autism at 8 years old. I have diabetes now so I go to the endocrinologist for routine checkups that include blood drawing. When I get blood drawn the technican must adhere to my routine for drawing blood since I do NOT like being touched without warning.

I tell the blood drawing staff that I have autism and don't like being touched. I explain the few things that must be done to be successful at drawing my blood. I don't ask for much. I just need to look directly at the place where they stick me. They can not ask me any questions or make small talk during the needle stick. I tell them I must focus all my energy on restaining the more unstable responses to being touched and stuck.

I have a good job, make great money and I am articulate when I feel safe and at peace. This woman seeing that I was obviously successful, happy and well spoken went on to tell me I WAS NOT AUTISTIC. I told her she was wrong and she got louder YOU ARE NOT AUTISTIC she said I can spot an autistic child or adult a mile away. She told me I was wrong. I was NOT autistic because; I did not act crazy, I did not stare into space with a vacant look on my face. Oh man she was a river of stupid stereotypes. She asked if I had any special rainman like qualities at which point I knew she was a fool. Talking to fools like her is hopeless.

The bad thing is in situations that exceed my abilities I become so slow and unconordinated, so confused people think I am retarded and tell me so. It is hard being an autistic adult because; within the space of 5 minutes I can do somethings so well people don't see my autism and immediately be challenged in a different way where the same people think I am retarded. That's life on the speectrum and it never gets any better!

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Gricel Quiles
5/15/2015 07:35:15 am

I have a 21 year old son with Autism/Related Disorders and Heart Disease. He is nonverbal. Also because of his inability to communicate he gets frustrated and has self injurious behaviors. (also difficult to potty train). It hurts me more also when his caregivers who suppposedly have an autistic person in their life compare my son with theirs. Saying there is something i am doing wrong. Well i want the world to know stop comparing and lets get together and help one another. (Especially those parents who have someone they love with autism.) I notice their can be a preference with high functioning and low functioning. Parents with high functioning children dont really want to socialize with low functioning. Your child is not better than a low functioning. Had to let it out. One thing i take him out everywhere i can whether society accepts him or not. Parents who quote unquote have normal children teach them to not look at autism as if its a monster.

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Luna
10/8/2016 08:30:18 am

Well, I actually am an adult who lost most of the "autistic spectrum" features. While there is no clean way to predict anybody's prognosis. I'm sick of people acting like recoveries just don't happen.

Reply
Catherine
5/25/2019 07:29:38 pm

I loved this article. My son is 3 1/2 and at 2 1/2 we had him tested for autism. He was very delayed in speech, not seeming to understand, and had frequent meltdowns. The doctors were unwilling to give a diagnosis at his young age but instead recommended early education with an IEP. School has helped him to learn to communicate better and he is ng understanding much better. He is still very delayed in speech and has many tantrums. While I don't necessarily think he is on the spectrum, I do know that he is "different" from other kids and it is heartbreaking watching him struggle and very irritating, to say the least, when people make rude comments about how he "just needs more discipline", or "they would never let their child act like that", etc. He is trying so hard to communicate, I can only imagine the frustration he feels and he is also only 3 which is a hard age anyhow.
Sorry long post, just wanted to say I can relate and sympathize. 💗

Reply



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