Advice for a hospital worker ignorant of autism

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Hey Guys

Wow that's really interesting! So much info, I think my coworkers may overload!

I am so glad I am not the "giving shots" lady! Thankfully rarely in my job do we have to give shots (or jabs as we call them here), in fact I often reassure kids that xray ladies don't need to use needles because we have a special xray machine and say that this is the fun part (as oppose to say the ER part)! It usually works help calm kids dwon but then of course sometimes just mentioning the word "shot" makes it worse!

I suppose the hardest thing from our perspective is that out patents are so mixed. It's a general hospital so I probably see (x-ray) about 15 kids a day. Of those 15, each may require a different approach based on age, intellect, confidence, parenting. In a week I probably only see 2/3 "disabled" kids - hope that's the right word. And that's covering any disability be it mental or physical. So in the last year I think I have x-rayed (that I definitely know of) 4 kids with some form of ASD.

What is difficult is to be able to meet a patient and within a few seconds determine the best approach for them. In typical kids the signs are more obvious and they tend to react in more obvious ways. I am deemed to be the one that's good with "screaming brats" so I usually get them! Which I actually love, I like the challenge and it's really fulfilling to be able to calm them down (usually by calming mum and dad down first), make them smile and get a good image. I make them take bets on if it's broken or not and if so how will it be broken. Girls just love this even though some people think it is inappropriate. I think it puts the focus solely on them and as long as they are not in huge amounts of pain it works!

Anyway I deviate, what I was getting to in a very round about way...was...

How can we make those quick decisions when an ASD person enters the room? From past experience I think that for moderate to severely affected kids it is best to ask the parent/carer the best approach and let them tell you what they think is best. But for mildly affected (so sorry don't know if this is the correct terminology) and Aspies, it is better to be more direct with the patient. So that means that I am assuming that more severely affected kids have a lower intellect? And vice versa? Is that correct? Mmmm not sure. What do you think? Even if you take intellect out of the question a more severely affected person would perhaps prefer to be instructed/touched by a parent/carer than a stranger. By the way it is very hard to image somebody without touching them!! !

Ok well great responses I really do appreciate them. Gotta go to work now and it's a beautiful day too! Have a good one

Hannah

Oh wow I came here to post some stuff but I see everyone had beat me to it. Yes all very good advice.

Be mindful of sensory issues (loud, too bright, etc...)

Keep in mind that aspies are VERY anxious in new situations, almost to a point of panic. We like to research and prepare ahead of time. It would help if there were a written pamphlet with pictures of the building, of the room, and the equipment, and description of the procedure. So the patient would know what to expect before they got there.

Explain exactly what's going to happen, in advance, before the procedure starts.

Talk about the equipment and point out the knobs and whatnot and what they do. We love machines.

Speaking of talking, aspies are terrible at chit-chat. If talkie is needed, try to find out what their interests are so you have something to talk about.

I agree with a lot of what has already been said.

A couple of things I would add, but may already have been covered.

It would be good to be told 5 minutes beforehand when your child is going to be called in for the x-ray. That means if the child is playing with a toy or reading that they can bring what they're doing to a close instead of suddenly having to abandon whatever they are doing.

If there is any delay, please tell your patient that there is a delay and how long it is likely to be. Keep your patient up-dated if the delay is longer than anticipated.

Really strong autism is more likely to go with a lower IQ, but "lower intellect" mightn't be quite the right term for it. In many cases, what you get with severe autism isn't really lower overall skills, but huge gaps between skill levels; like they'll have an amazing ability for spatial reasoning but be really horrible at language, or they'll be unable to brush their teeth and wash their face without prompting, but be able to play basketball pretty well, or be unable to keep a job as a cashier but do very well as a laboratory technician... You can't expect that autism will automatically mean a low measurable IQ, either, because in some cases the person is very strongly autistic but also very "intelligent" (whatever that means, with the usual scattered skills). Or they might appear "intelligent" but actually have a lot of deficits in non-academic areas. We are really very much individuals. Even many non-verbal people understand much more than they can say, and can benefit from explanations; and some who can't interpret speech still get tone-of-voice just fine.

You will probably also get very overprotective parents of autistic children. These parents are used to fighting the whole world to get what their kids need, and in some cases will have gotten so protective that they assume everyone is going to misunderstand or even abuse their child, and they assume their child can't protect themselves. Parents of special needs kids often have a hard time letting go. I don't know how you would deal with that but one assumes that in these cases the parents might need to know what is going on, just like the child would.

This thread made me think of something.
It’s so dumb, I don’t know why I never made the connection before.

I never felt as though I had a “problem” with transitions, because they don’t exactly upset me. But I do need time to return to Earth and understand. It’s not about a physical transition but about a change of focus.

For example, if you come up to me and start talking before I’m ready, it’s as though I have to save-and-exit from wherever my mind is and open a new window before I can really hear you. Sometimes I’m on a more distant planet than others, so the amount of time I need can vary. I often miss the first half of a sentence, then spend the rest of the conversation playing catch-up and trying to guess.

If you start with “Mary went to the zoo,” and then go on and on about what happened at the zoo and never mention her name again, I need to guess. If I make the wrong guess, I get more and more confused if the story is out of character for Betty.

Multiply that by ten if I’m talking to someone who has a different set of communication limitations. Sometimes, it doesn’t even help to say “Ok, you lost me. Start over. Who are we talking about?” Some people get on a roll, and no power on earth can get their attention. I almost want to jump up and down and wave with both hands, “Hey! I’m way back here!”

Sorry, I know that this is not really helpful to h_r_matthews in that job. I just put it together and felt like rambling.

So have I . Many times. My "talk therapy" is quite often "type therapy". But I digress.
As other people have said, forwarned is forarmed. I like to know what is going to happen step by step, what treatment is what alternatives are.

Also - sensory issues. Is the MRI the one that makes that awful clanging noise? I don't know if you can wear earplugs in that thing, but if so it might help.

And, I know emergency departments are really busy, but the way some medical staff run in, grab you, test your BP and run out again just spins me out . I brief introduction and explanation would do wonders.

You know a lot of this advice for patients on the spectrum probably wouldn't hurt for all children. It's funny, as a kid, I always got along with grown ups better because they had more of an etiquette when it came to dealing with strange people. Now as a grown up, I get along with kids better because I remembered what it was like to be a kid and have no respect and all these assumptions based on my age, so I really consciously try to give kids respects and treat their mindframes as if they were adult mindframes (like what's happening on Spongebob is just as important (if not more) as what happens in the news or on Days of our Lives). While some grown ups think I'm crazy, I'm still usually the first person they call when they have problems with their kids and they don't know what to do or how to reach them because they see I make connections with kids. Advice I gave out is what I do all the time around kids. Like my friend's very NT kids will be in the car with us wanting to know where we are going, and my friend would be like, "It's none of your business, you'll find out when we get there," and then when I see the opportunity I jump in with, "We are going to the store to get some groceries, and then I have to stop by the bank and make this deposit, and since it's almost lunch time, how about we try to eat somewhere that has ice cream?" Anytime I'm not sure if we are going to do something, I tell them it might not happen. Anytime I can make sure we do something, I make sure I fulfill the promises. Kids assume everything you say is a promise, so you have to make that distinction for them. Until they are about 10-13 years old, they are very concrete thinkers. So watch what you say as you could be very misunderstood.

Whatever you promote for your section in the hospital, make a copy and submit for changes to be made throughout as consistency is a good thing. It isn't about just treating patients, but also customer service. I personally put kids on a higher pedestal than grown ups (because they are so innocent and are our future), so in my mind, what you are doing for xray is a great thing that needs to spread beyond xray to the rest of the hospital.

That happened to me when I was in the hospital as a kid. They told me a procedure wouldn't hurt, and of course it hurt quite a lot (they were inserting a tube through my back to drain an abscess behind my liver), and that was the last time I trusted them to tell me about possible pain. I remember being really angry about it, because like your daughter, I can deal with pain, but I like to know about it ahead of time. Who likes to be surprised by pain?

Youmight want to bear in mind that some children and adults with AS are very well read and may know quite a bit about X-ray equipment. You might be in for a shock, I have shocked one ER doctor. He asked me what meds my wife was on, I then replied with words to the effect of "I can not recall the exact drug, but it is one which has XYZ biochemical effect". He looked a bit shocked.

One of the possible side effects of being very well read is that the AS child might have read things like to sad end of Mrs Curie. So they might be a bit more nervous of radiation than the average member of the public. It might be a good idea to compile a list of common X-rays and their dose. You might also want to convert the dose into a risk factor of some dire outcome.

I think you should try to appeal to the intellectual side of things. Just as a nervous NT patient might be calmed down by chatting to the doc, a child with an ASD might want to learn about a CAT scan works, or something like that. Hell, I'm 16, but the second I see anything medical I'm captivated

I agree with telling things ahead of time and explaining. I'm a lot more calm if I know what's going to happen and why.
Also say things even if it's obvious. It might not be obvious to me.
Even if it is obvious to me, I like it when things are said. It means I don't have to guess.

I want to add: let the person stim!
Even if s/he is an adult, even if it looks weird, just let them stim.
Stimming is natural for us. One of reasons is to calm down.

Last edited by Sarafina7 on 03 Aug 2009, 5:24 am, edited 2 times in total.

Any visit to a hospital can be very stressful to someone with autism, and especially a child. It's bright, it smells funny, there's lots of people walking around, running around, sitting around, and it generally involves a great deal of inactivity, and a great deal of stress and uncertainty about what and when things are about to happen.

I'd definitely agree with everyone else that a proper, noncondescending description of what I'm about to go through isn't just helpful, it's necessary. I need to know, for example, that I'm going to be lying down for a few minutes while the machine is prepared. I need to know if there's going to be any noises, any lights, etc. I need to know what to expect.

I don't know if this would be a factor for everyone, but one thing that always upset me as a child was the condescending way that doctors would sometimes make some little comment about me to my parents as if I wasn't sitting right there listening. Especially if the comment was designed to be difficult for me to understand. The switch from the patronising "sing song" voice most people use to talk to children also annoyed me, and it's absence during the little statements to my parents stressed me as well.

read the book oasis guide to aspergers

that is the book most of the right information is found

seems like most books is from people that have the agenda of presenting their idea of a cure so any information that fits what they want you to think is added and all others is deleted

Some autistics talk to themselves (out loud). Don't worry about it and don't try to stop it.

For me sometimes it's done unconsciously (without me realizing) and sometimes I do it on purpose. The reason I do it (on purpose) is that talking to myself helps me process my thoughts. That is, I process my thoughts better when I voice them outloud.

I recall about almost 2 years ago when I went for lung x-rays due to being exposed to asbestos while on a job site when I was drywalling.I was ok.It was more of a way so if I have any difficulty a few years from now, I will be able to collect workers compensation (injury insurance for those who get injured while at work).Anyways, the x-ray was done at the Vegreville hospital, since I lived in Vegreville.The xray thing was all done digitally.I just stood in front of a machine thing and it "scanned" and the xray was done in seconds.

h_r_matthews,

You YOURSELF said what the number one problem in ALL OF MEDICINE, heck, everything, is. YOU DON'T KNOW EVERYTHING!! !! !! !! ! In fact, you don't know everything about ANYTHING!! !! !! ! A lot of idiots in the medical profession believing the opposite have set science back more than the church ever could have. Don't believe me? Want a very BASIC example? OK!

http://en.wikipedia.org/wiki/Ignaz_Semmelweis

He came up with a "stupid", which I say sarcastically, idea. He was RIDICULED! He was COMMITTED! His "DUMB" theory made sense, had a basic theory in fact, fit, and, in practice SAVED LIVES! Isn't a 37% to 1% mortality drop significant? And he was asking for SUCH a simple thing. His work was published and peer reviewed fact like 2 years after he died. Pastuer explained it only a year before his death!

He died because he was committed, and heavily mistreated by people that didn't believe him and, because THEY had simply not washed their hands, gave him an infection that killed him 2 weeks later. In a way, his death in an asylum proved that he had no reason to be committed.

IRONIC!

This is even MORE true with autistics(autistic, ADHD, PDD, asperger), since they may be hyper/hypo sensitive and some drugs may even appear to have the OPPOSITE effect.
ALSO, emotions may appear scewed.

If you realize THAT, you will be better off.