Advice for a hospital worker ignorant of autism

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Hi guys!

I am a radiographer/xray tech and have been asked to do a talk at work on any subject, I have chosen Autism as a family member has recently been diagnosed and I feel there is a general ignorance abut the whole subject.

So I'm doing lots of research and it's easy to get lots of info about the "facts", though I do use the term loosely! But what I really need to know in order to keep it relevant to my audience isn't so easy to find.

So...my question to you, be you a person with ASD, a parent or carer is....If you/your child is going to hospital for an examination like a CT scan, MRI, xray or ultrasound how best can we help to make the whole procedure go more smoothly for your child and/or yourself?

I understand that this is very vague and appreciate that each person with ASD has very different needs, level of understanding etc. I am sure many of you would think treat them as a typical (is that the right term) person? Which I am sure works for some people but obviously not for others.

An example of a recent case...I pick up an xray form, it's busy, I see the word autism on it as I am walking out to the waiting room, I call in the child and parent. Child is 7 with PDD (I later realised as sadly mum couldn't remember what her child had been diagnosed with). Mum very distressed that child wasn't going to co-operate, apologising in advance for his behaviour. I try and talk with patient, he very adamantly and fairly firmly refuses xray. Nurse enters (of the old matron type) doesn't know he is Autistic and starts berating both child and mother! All hell breaks loose but after 2 hours child changes his mind when mum offers a new transformer and I get rid of offending nurse! All ok in end but clearly we made some mistakes. This is partly what got me looking into Autism as I felt we very nearly let this mother and child down.

Any advice appreciated from parents of young kids to aspies (can I say that? Im just copying)!

Cheers

PS Im not really that ignorant of autism (since I started researching it) but many of my co-workers are!

Hannah

I would take into account their sensory and anxiety issues. I'd be anxious to get an MRI done, just because it is something I've never had before. I really find any slight change hard to deal with.
I think going through the procedure step-by-step may help. Letting them know about what environment they'll be in to better prepare them for the procedure. I think that's why I worry so much about going to a new place, because I'm not familiar with it.
That's all I can think of at the moment.

Any time I visit a doctor or dentist, I am given anti anxiety medication in advance. I don't think I could go to one without it.

never yell or or gang up or speak harshly etc. speak calmly.
lots of patience.
don't force eye contact if kid doesn't make eye contact. with my sister for example you shouldn't even look at her.
be aware of sensory issues-- anything from light taste touch etc.
prepare-- have child come in to see what will happen day before. or explain everything that will happen clearly while kid is in there.

My son likes to know what's going to happen. He wants to see when the needle goes in when he gets a shot. That way he can prepare himself. It depends though, I've spent 5 hours at the emergency room because he needed to be tranquilized to get a few stitches. But in general I would say children with A.S.D. don't like surprises.

Two things.

First, warn people before you do something. It doesn't matter if they're two years old and/or have never said a word in their lives, or if they're adults on their own and look like they can handle anything. If you're autistic, unexpected things may really, really upset you. If you've got to give a kid a booster shot, tell him you're going to do it and don't lie that it doesn't hurt--though you will of course want to reassure them that it will only hurt a little and not for long. That's another thing: Taking things literally means that if you make a reassuring promise that isn't literally true or can be easily misinterpreted, it can cause a lot of trouble in the long run. Tell us the truth. Knowing what is going to happen is really reassuring.

Second, we're probably going to need time. Some of us (not all, but a lot) will have auditory-processing issues that mean you'll have to repeat things, pause while we interpret what we've heard, or get things re-stated a different way. Others will be shy or have trouble holding conversations properly. Some will get stuck lecturing on some topic or other--may be related or not--and forget what they meant to say. So, extra time is a plus, to be absolutely sure they know what you are saying and you know what they are saying. Communication is possibly the most important issue when you are dealing with autistic people, simply because anything else, someone else can do for you; but nobody can communicate your thoughts and feelings for you. So: Extra time, try coming at it a few different ways, don't get offended if an exasperated Aspie hands you a written essay on what he meant to say instead of fumbling around with speech! (Seriously, I've done that.)

Oh, you should also be aware that a lot of autistics are frankly in love with those heavy lead aprons you use for X-rays They feel wonderful to more than a few of us (though it's not impossible for them to feel terrible to a few people; we are very diverse!). Even typical people sometimes love them. So don't be surprised if somebody seems calmer when they've got one draped across them, or even specifically asks to keep the thing on longer.

Explain everything fully and even with an adult patient don't assume that something is just understood. Once when I was in the hospital for septicemia, my doctor came around and told me that they were going to come and add some medicine to my IV. They came in and did so and left. I was feeling pretty good and the IV was on an ambulatory stand, so I decided to take the book I had down to this pretty little atrium on the ground floor and sit in the shade with the plants and read. About an hour later, the doctor found me and told me that I was supposed to stay in my room so they could monitor me while the medicine was going in. No one had told me that part! They'd spent an hour searching the hospital for me. No one was mad, though, and we laughed about it for a while. Afterwards, the nurse would always tell me, "Now, don't go anywhere!"

Wow guys thanks so much for all your speedy and well thought out replies. They are all really useful and will help me convey what I need to my audience. I hope

Another quickie, can you remember back to your early years? Any particular advice pertaining to young children? For example with a typical child who looked scared/anxious I would usually get their teddy/toy dinosaur/robot or whatever (we have our own if they dont have one) and let them xray them. So move the table up and down, switch the light on, move the camera over the teddy, then actually let them take an xray, let them process it (push buttons), so they can see the final result. We usually then give them this to take away (many kids use them in show and tell). Do you think this would be sensory overload for kids with ASD? I know I'm generalising. It can be quite noisy, moving the machine, pressing buttons etc. Which I think could be affronting but then they know exactly what to expect, and it can make it fun.

Ok well thanks again guys, I hope I can make a difference, if only very small in the hospital I work in!

Hannah

I can only speak in regards to my own daughter, but for her.. she might get so absorbed in the machines that you'd lose them! And then it might be even harder for you to do your job and take xrays of her. She wouldn't want to give up the machine. Remember a lot of people with autism don't transition well. I know when someone bursts into my room and opens curtains and tries to get me to do what they want me to do.. I don't have a good reaction.

Showing the machine is a good idea, and letting her SEE how it moves.. but not necessarily touch it herself.

I will echo what others said, for my daughter or myself.. talk me through the steps that will happen slowly. Be aware that being a bright room for long periods of time with no one there can cause a lot of overload and/or anxiety.

The last time I had to visit the ER myself, they left me in a tiny room lovingly dubbed "the supply closet" because they store things in there.. which meant doctors came in and out grabbing things, but not saying anything to me. After an hour I realized my rocking was becoming quite noticeable and more severe. I tried not to cry, but there was just so much talking down the hall, people walking by my door, bright lights, and NO ONE coming to talk to me. No one said, hey we didn't forget you! I was alone for about 4 hours before someone finally came to see me. I was in the ER because i was in pain, and they left me. And worse? They gave me nurse Ratchett. Seriously, she berated me and talked down to me. She yelled at me for not asking for a blanket because I was cold.

I knew if I told them I had Asperger's it wouldn't make a difference because I'm quite sure they wouldn't have a clue.

Before I had surgery however I did tell them, and they gave me something to help relax me.

I was going to say, whenever possible, appeal to the "little professor." Sometimes the machines are so cool that you can forget to be anxious. Even if he doesn't respond perfectly and you're not sure how much he understands, give real, useful facts. It can be simplified but don't give a lot of sugary crap or baby talk.

I can only talk from personal experience (Unfortunately I was a teenager when I first had an x-ray...) but one thing that I found comforting was being able to talk about my special interest while waiting for the machine to be ready. I know it might be a little strange sitting with a 14 year old and listening to a monologue about rabbits but it could really help calm us down. As long as we understand that there is a point where we must be quiet and sit still it is fine. Just give instructions clearly, for example don't just say, 'lie still' because this could lead to problems! I would question how long I was supposed to lie still. seconds? minutes? hours? Don't expect a person with ASD to just automatically assume when the procedure is over either! They'll need telling that it is over! The one thing I found REALLY distressing was that I didn't know where to go after it was done because no one told me. I wish someone had said, 'go out of that door and wait in the waiting room/go home' or something...

i have been in xray only once and i was 7 at time when i didn't let em take x rays i was wrapped in planked it helped at least a bit since i like pressure because of my sensory issues

isn't autism a PDD? PDD is a vague dx.

I like to be told what's going to happen and yeah, don't lie about anything. I think when I was a kid I would have liked to be shown any machinery I'd be involved in. if a kid resists, you can offer to show them the x-ray room.

I hate the whole "it won't hurt" thing with shots. it does hurt, and last thing you want is kids thinking you're all liars. they tried that with my daughter and I told them to their face I don't lie to her, but she's very brave and needs a few minutes to mentally prepare for the pain, then she'll say it's ok. she was 7 then. the nurses made things really bad by lying to her when she was 2 so she had bad anxiety over the doctor's office for years.

if someone with autism comes in I think staff should be willing to shuffle the schedule a little. that kind of attitude has helped with my NLD kid. more pressure to do it NOW because the staff can't deviate from their schedule means more pressure on the kid, hence more resistance. just take another patient and let the kid chill for a while, then see if they're ready.

It's really hard to say things without generalizing, but many Aspie children I know (including myself as a kid) really didn't appreciate the whole "I'm a grown up so what I say goes" type mentality. I guess some advice is to not treat them like they are dumb or babies. The Aspie kid also doubts more than the norm for that age group, and while the assurance that it's not going to hurt and everything will be okay is necessary, it by itself isn't enough unless you've established some sort of credibility, so if something is going to hurt, be honest or you will lose that credibility.

I think explaining what the machine is called, what it does, how it does it, what the child will have to do, what you do, and things like that would go far. If the child asks a question and it's unanswered, that will destroy the credibility as well as the child might assume you aren't answering because you don't know. Even though they say Aspies have a hard time reading facial cues, they still get an overall feeling of them, and a smiley friendly face does mean something.

I guess the important thing is to talk and LISTEN to all the patients. I get very frustrated when people in the healthcare industry don't listen and often ask me questions I had already answered.

Also, all people seem to have a preference on the way the think in global vs detail. Some people find the big picture in the details while others clarify the big picture through details. So, some patients will list symptom by symptom expecting you guys to figure out the big picture while others will spare you those details and just tell you whats wrong. I'm the symptom by symptom patient, so that's why I get frustrated when people aren't really listening to me because then I feel like they've missed something. Because I think like that and it goes no where with Docs and nurses, I tend to self diagnose through research and get the doc's approval because most people want spared the details. Technicians I just tend to chat with throughout the whole process, and I love when they give me useful information (like when my ultrasound tech explained to me how smoking actually affects the pregancy through aging the placenta).

Also things like temperature, smells, decorations, etc. play a role. Anywhere you can put up some colorful pictures (they don't even have to be spongebob, they can be art and it doesn't have to be pastel...why all hospitals decorate in pastel is beyond me), friendly odors (I'm assuming there's a rule that hospitals have to smell like antibacterial disinfectent latex for allergy purposes), ways to warm any devices before it touches the body (like pillows or a cloth for cold metal seats). Maybe have a stuffed animal available to "perform the xray" first like do a mock x ray with the stuffed animal without using the machines if possible. I think a huge problem too is that many kids have been lied to about shots, so they kinda are expecting that no matter where they go in a medical environment. And of course, what would be a medical experience to a child without a lolly or sticker (lolly pops are better though for toddler age as they don't know what to do with stickers yet)? If the budget permits, there's a lot of cheap party type favor toys online...I used to buy glow sticks for halloween. Some sort of prepackaged less than 100 calorie snack might be smart to keep around too. When talking with kids, always act like it's fun as opposed to work. Maybe learn some of those cheesy jokes to break the ice like "What's the difference between roast beef and pea soup...anyone can roast beef, but no one can pee soup." Got that from ICarly. Also kids don't wait well, so anytime you can shorten their wait time the better they will be for sitting still and having an open mind. If they are waiting where there are toys and tv, and then you move them to the room that doesn't have those things and make them wait a half hour, yeah, you would be better off keeping them near the toys and tv for that half hour. If they really are sick or in a lot of pain (like they probably did break their leg or something), they are probably very scared about it, and it helps to explain to them that these machines will help them feel better so they don't hurt anymore and can play sooner than later again. All kids respond much better when you approach them from a nurturing person as opposed to your critical. That nurse you mentioned came at them from her critical side, and all kids don't respond to that well (especially those on the spectrum). You are also less apt to anger a parent coming from your nurturing side as well. Nobody likes to feel like they did something wrong. Aspie kids are incredibly sensitive to that, even "don't touch that" will not sit well with them because they manage to take it very personal (a better way is to either distract them, or go with "I'm the only person allowed to touch that, or I'm not even allowed to touch that").

I'm sorry but I don't have time to organize this post better. So I hope it helps in its disorganized TMI form.

You just reminded me of a procedure I had when I was about 14 for a blocked gland in my mouth. The doctor told me that it wouldn't hurt because they were using a blunt needle rather than a sharp one. I spent so much time trying to work out the logic behind that one, that I didn't notice the procedure until they'd gotten half-way through.

Really. I'm severely allergic to fascism and have no respect for authority. Apparently, most people, when someone starts with an authoritative attitude, they just reflexively get in line, with no thinking involved. People often try to push that herd-mentality button, which I don't have, and then get angry when I don't respond as expected. So, from early childhood, I developed a secondary reflex. It's like -- Au-oh, they're trying to push that mystery button again -- I've seen this movie. They'll keep doing it and get madder and madder until something bad happens. You might be smiling and think you're being friendly, but I know that it's a thinly veiled threat, long before I figure out exactly what it is that you want. If I do get in line, it's only after a conscious calculation, based mostly on fear, and I resent it.

It still baffles me, after a half-century, when people say dumb things that are obviously not true, knowing that there's a 100% guarantee of getting caught in the lie. Insulting my intelligence and trying to trick me is bad enough, but pointless nonsense is just baffling. It tells me that I can't trust anything you say.

That made me think. I always hate being moved to the examination room too soon, but that's because I know what to expect and that it will be boring. But for a kid who doesn't know what's coming, or if he has sensory issues with the crowed waiting room, you might give him a choice. Everyone likes choices.