Has your child with autism ever had to go for surgery?

[DSpad]

Hi everyone. I am an autism consultant and tutor. I am interested in hearing about the experience you had while taking your child for surgery. For instance, what did the nursing staff do well? What do you think could have been done better? Do you think staff was trained/prepared to communicate with the child with autism?

Anything you can tell me would be helpful as I train the staff at a local surgery center.

Thanks.This input will ultimately make this situation less stressful for others.

DSpad

[SilverLace]

My stepson has AS (and he's had surgery) and I am a nurse so my response comes from both of those experiences.

I think the best thing that can be done would be to work with the child life specialists ahead of time to make up a social story (with visuals) ahead of time that can be used and referred to before and during the experience.  Many child can adapt to the different ways adults explain things... but kids with AS will struggle with this.  It is important to inform them, but not make it overly specific, because as/if things change it might be very difficult for them to adjust to those changes.  I would encourage the staff to use the same descriptors/language as the social story to keep things consistent.

Also, a lot like older adults, they do not behave the way you would expect when they are in pain and may not be able to use a pain scale the ways their peers would.  I would watch more for agitation and restlessness than reports of pain.

Other than that, I think many children's hospitals today are doing things that would help as AS child... like allowing parents to stay 24 hours and be in procedures, and be allowed to eat what they want (when eating is allowed).

I don't have a lot to offer about classic autism, hopefully some others will chime in with that. HTH!

[StephandOwen]

Ds has had a couple of surgeries. He's also stayed multiple days in the hospital twice (once was related to one surgery, but admission to the hospital was actually days after the surgery).

For us, I found myself educating the nurses and doctors on the fly, constantly. For both of the surgeries I made a social story ahead of time, but had no help from the nurses. The nurses did not seem to be trained to communicate with children with autism, they mostly just asked me questions about how I thought ds was doing (whether he needed more pain meds or whatever).

I think one key thing is to teach your staff that not all kids with autism are alike. It would do them well to take time to talk to the parents and find out as much about the child and their needs as possible. For example- my child is a runner. The nurses really had to be attentive to ds while they were transfering him from the pre-op area to the or to sedate him because he was more likely than the average child to just take off running if someone wasn't holding his hand firmly (the first time they buckled him in a car/ride on toy and pushed him to the or. The second time he walked while holding a nurses hand). Other children with autism aren't runners so it's not something a nurse always has to worry about.

[SilverLace]

Originally Posted by StephandOwen 

 The nurses did not seem to be trained to communicate with children with autism, they mostly just asked me questions about how I thought ds was doing (whether he needed more pain meds or whatever).
 

Nurses are not trained how to communicate with anyone.... in my nursing education we covered the basic of developmental stages and how to generally work with kids at different ages, but it was brief and didn't cover SN at all.

Maybe that is disappointing, but I think it's good that the nurses were asking you and involving you in your child's care.