Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

How do I tell my autistic 5 year old that she has to have surgery?

Suzy doesn't understand a whole lot that's said to her. She has to have an adenoidectomy soon. She's also going to have her sinus passages cleared out, and the channels between the passages have to be enlarged. She's also going to have tubes put in her ears. So, since she doesn't understand a lot, how do I explain what's going to happen, why it's going to happen and how she's going to feel afterwards?

Answer Question

Asked by Lisa2ASDkids at 8:00 PM on Feb. 14, 2011 in School-Age Kids (5-8)

Level 3 (17 Credits)
Answers (25)
  • I would just try to tell her the best you can, but i wouldn't go into all the detail of what they are going to do her. Just tell her that she will go to sleep, they will do what needs to be done to make her better, and then it might hurt a little when she wakes up. She may understand more than you think she does.

    Answer by lowencope at 8:02 PM on Feb. 14, 2011

  • You should make a picture book to show her nurses in scrubs, the different machines, the bed she will be lying in. The picture book reinforcement several times a day helps with my autistic nephew. Plus taking a few field trips to walk around the hospital where she is having the surgery can relieve some of the anxiety she will be feeling. Also speak with the surgeon about informing the staff about her autism.

    Answer by gapeach7212 at 8:22 PM on Feb. 14, 2011

  • By picture book I mean actually take pictures with your camera of front of hospital, nurses, etc and try putting them in order the best you can

    Answer by gapeach7212 at 8:24 PM on Feb. 14, 2011

  • you dont tell her , when time to go to apt. , just go , say dr .is gonna look at your mouth its ok ,, stay with her long as you can , she will be sedated or asleep , go to recovery and see you , go home and take care of her , this worked very well with my autistic son on many occasions , if my face looks like everything is ok -- then hes pretty much ok , no need to explain - just take care of.

    Answer by letstalk747 at 9:03 PM on Feb. 14, 2011

  • Most definitely use a social story! If you have the opportunity take pictures with your camera of the events that will happen, 1) suzy will get in the car 2) arrive at hospital 3) Dr.'s help her fall asleep 4) wake up, mommy will be there 5) may feel yucky but this is ok. Add more or less details as needed for your child, but use real pictures if possible. Read the story several times before the surgery, and if possible let her tour the hospital while talking about the story. You might even have one for recovery too, that talks about waking up feeling yucky, taking medicine that helps you feel better, extra hugs from mommy, and the ending result being her happy and all better :)

    Answer by ba13ygrl1987 at 12:43 AM on Feb. 15, 2011

  • oh wow! poor thing! explain it the best you can, you said she may not understand, thats ok, when you have to go in, just tell her what theyre going to do. im not sure what else though, other than what these ladies have told you. picture book, social stories. good luck! and hugs to the little one!

    Answer by LoveMyLos at 10:23 PM on Feb. 15, 2011

  • You could also have her tour the hospital so it's not an unfamiliar environment. Bring her loveys and stuffed animals.

    Answer by Kristin_Allen at 4:30 AM on Feb. 16, 2011

  • if she doesn't understand a lot then just take her to have it done & let that be it. no use trying to figure it out if she wont get it anyway.


    Answer by .thickie.thick. at 10:26 AM on Feb. 16, 2011

  • I heard that at that age, no matter what, you don't tell them till the morning of, or the night before.

    My son is three, and a few months ago had tubes put in, and they thought they were going to have to do more work than they did. I told him the night before we were going to the hospital so the doctor could fix his ears. He even helped me pack a bag with toys and stuff. When we got there, we explained that he was going to go to sleep, and the doctor was going to fix his ears, then he was going to wake up, and mommy was going to come get him. He has SPD, and he understood everything that I said, and was actually excited to go, but when he woke up, he was in full meltdown mode. The only thing that set him off was the stickers still on him from the monitors.

    Sinus work is painful, and I don't know if telling her too far before hand would be a good idea, or she might be scared.

    Answer by corbysmom531 at 7:20 PM on Feb. 16, 2011

  • One of my sons is also Autistic, and you would be surprised how much he understands in comparison to how he is able to express that understanding kwim? Anyway I would explain it to her in a gentle way, and let her know that she you are gonna be there for her when she wakes up, and that the surgery is going to help her feel all better. My other son (not with ASD) got tubes/adenoids removed last year, and we explained why he needed it done, and that it would help him. He was a little scared,but he did just fine. Good luck.

    Answer by Schleetle at 9:48 AM on Feb. 17, 2011

Join CafeMom now to contribute your answer and become part of our community. It's free and takes just a minute.