Advice on Preparing My Autie Son for MRI

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My 6 year old autie son will be going for a MRI under general anaesthetic in a couple of weeks time. He has been diagnosed with infantile autism & has an asymmetrical skull & suspected epilepsy. As yet my son is unaware that he has these problems. We use PECS with him & will write a social story preparing him for the MRI. However, D's a highly intelligent kid & it's going to be very difficult telling him that he needs to undergo what for him will be a terrifying experience without giving him a good reason. Is now the best time to tell him the truth? Or just part of it? I don't want to scare him! I'd really appreciate some advice from other parents who've been through this with their own kids or from other auties/aspies who've experienced this themselves.

I think play-acting it out with a doll will help - include the IV and oxygen mask and everything. Maybe you can visit the hospital a few times before his appointment. I think he is going to need some kind of explanation, but I don't know enough about it to give you the words. Good Luck.

Thanks, mysterious_misfit. That's an excellent idea!

yes the rehearsal of the visit and impending proceedures will defuse the novelty of expectations that seem to upset most AS.

Thanks for your advice, donkey. We will make a couple of "rehearsal" appointments with the hospital.

If he is going under general anaesthetic then you should be preparing that part. Just say it will put him in a calm sleep that he may or may not remember.

MRIs can be very loud if you are not under.

Some people say/do the weirdest thing when coming out of anaesthesia. Sometimes you will think they are full conscious but keep on repeating the same thing. So it is good to wait with them for a while before proceeding home.

You might inquire. Sometime the anaesthetist can give 'pleasant' calming drugs before putting the patent under.

I think you should expalin his autism in some way yes.

hmm, I remember falling asleep immediately upon entering my mri's as a child. Of course, today they aren't half as scary as they no longer have the ones that you go inside a tunnel.

As an older child, not under anesthia, I discovered the best way to deal with the noise I could hear through the ear plus was to make sense of it. When I was fourteen I interpreted the buzzing as saying "no so looooouuuudddd" "Nooooooot so loud" Last time I was too exhausted to pay any attention and the time before that I was more worried about how I could move my leg from its uncomfortable position without making the technician angry

Maybe also explain the importance of what the doctors are doing. I was about 6, maybe a bit younger, when they had to lock down the hospital to search for me. you see the doctors kept coming in and talking to me, giving medicine etc and all I wanted to do was sleep. So when my mom left the room, I left, found an empty room and went to sleep under the bed where no one would wake me up.

Also, perhaps prepare him and the staff you know that will likely be seeing numerous times that day that he might be more upset by social contact than he is if they come in and ignore him. Often times children get extra attention when in the hospital. I think the reason my little sister is so sociable is she spent the bulk of the first 2 years of her life in a hospital with doctors/nurses who loved giving her extra-attention. everytime she'd dress up for years she'd say "don't I look pretty" - while in the hospital her dressing up resulting in numerous staff commenting on how pretty she was.

I had an MRI at the age of 11 or 12, and although it wasn't pleasant, I got through it fine. I had a good doctor who explained things in terms I could easily understand. After the explanations, she told me to take off my shoes and lay down on a flat surface that would slide into the MRI tube. (Open MRI was still in the development phase at the time.) She warned me about the noise level inside, but said she would give me a warning before the noise begins. Then she handed me a remote control with just one button. After that, the doctor put foam earplugs in my ears (they were a little too large but tolerable). Finally, she put a strange device over my head that resembled oversized headphones; it was big enough to cover parts of my cheeks and temples.

A few minute later, I felt myself going inside the MRI tube. The tube was dark, with little light coming in from the outside. The top of the tube had a simplistic laser show on it (or a computer simulation of it). I wasn't sure if it was something to keep the patient calm or a part of the MRI procedure. Suddenly, I heard the doctors voice in the tube: "If you're OK, press the button". So I did. She continued: "I will knock on the microphone twice before the noise begins, so you don't get startled. If you understood that, press the button". So I did. A few minutes later, I heard two knocks, followed by a loud rattling noise. It resembled a combination of jet engines and a machine press. I just watched lights above me, while the noise continued; however, I didn't end up pressing the button. About five minutes later, the noise stopped. I heard the doctors voice again: "I'll give you a few minutes to rest, then do another round". The same process (warning knocks, noise, light show, etc.) repeated. Finally, I heard the voice again: "it's all done; when you're ready to come out, press the button". So I did, after catching my breath for a minute.

When I came out, the doctor helped get down from the machine, and remove the device and the earplugs. Then she brought me a large cup of water, and said: "take this, you look really agitated". I chugged the water in a matter of seconds. After briefly speaking to my parents for a few minutes, she thanked me for being cooperative, and went into another room. Then I left the office with my parents. They praised me for not getting scared, although I'm sure this had to do with the doctor not using the word "scared". (Did she somehow know that she shouldn't use that word?)

Overall, I was very pleased with the way the doctor treated me. In particular, I liked the way she used the words "startled" and "agitated", rather than "scared". The procedure itself wasn't too uncomfortable either. I was given enough advance warning about the noise, and the laser show, although simplistic, was interesting enough to give something to focus on. I was conscious and awake the whole time. Obviously, the experience may vary for your son. My procedure was in 1994, and MRI has come a long way since then. Perhaps your son will be less frightened by the Open MRI. But perhaps you can let him read this post, so he'll get a gist of what he'll be going through.

Thanks for all of your very helpful replies!

Aspie1, I very much appreciated your detailed description of the MRI. I found it very interesting!

Triangular-Trees, I have noticed that my son is calmer if people don't make a fuss of him. Thank you for reminding me to point that out to the medical staff.

0_equals_true, we have decided that it is time we told my son about having autism. We'd rather he hears about it from us than from other autie kids in his school or from overhearing conversations. We'll be having a meeting with my son's teachers & psychologist next week to discuss how to do this without scaring or stressing my son.

First of all, please check out the information that's out there about MRIs with dye/contrast...there are some lawsuits because of a great danger...reported it seems last year...Sadly, my kiddo had his about 2 years ago, I'm still checking the impact if any...

Anyway, when my kiddo had it we lived out of the country and the gave him something to "drink"...just a regular medicine for him to drink...we sat with him until he started acting "VERY SILLY"...it was actually funny to watch...when he was really "high", they took him and his dad went with him...then we just waited for him to wake up...

It wasn't a big deal for us, as my kiddo's big deal is the whole "shots, blood type stuff"...not medicines...Why do they use a "general anesthesia???" Can't they just give him something orally? I think that's just a way for the doctors/hospitals to make more money...

We live in Denmark & all our medical things are free, so our doctors/hospitals won't be making any money from us. The MRI will take an hour & it would be very difficult for any young child to lie completely still for that long, which is why he will be given general anaesthesia.

They HAVE to make more money! Otherwise, they will do less, etc... In the US, even with full insurance and/or medicare, more work means more money, even if the patient pays NOTHING!

And HECK, my uncle, in Denmark(Believe it or not), is getting less care, because he is older! So the Danish system isn't perfect either.

No, the health system here isn't perfect & I know of other Danish moms who are still trying to get help for their kids. I think we were just blessed to have dealt with a marvellous bunch of people. I can't praise them enough!

I want to say a very special "thank you" to all of you who kindly replied to this thread & via PM. I followed your advice & my son had his MRI last week, with as little stress as possible. THANK YOU!! !

Im really glad that went well

the NAS has some good books for children explaining autism, I expect they will post to denmark or you could look them up on NAS then find them on amazon. My daughter felt really bad about having autism and being different at first but the books are really useful. I think they also have dvd explaining it to kids too.

Thanks, lotusblommom. I'll definitely take a look.

I forgot to mention that I also told my son about his autism. I did a social story for him explaining autism, which he understood & once I reassured him that he's not sick, he was fine. We now chat about autism freely.