Comical communication passport for NTs - ideas wanted

[tazz]

So this needs some background.

I am attending weekly meetings at my local specialist autism service. We've been discussing various topics. This weeks topic was communication. Common problems that autistic people experience. Ideas to make things easier.

One of the things that the social workers can do is prepare a "communication passport". The idea is that in certain scenarios, such as in a hospital setting, you could hand it over to the staff so they have a written summary of any difficulties you have with communication and a prepared statement about how they can make it easier for you to understand what's happening. It has two sections: "How I normally communicate" and "How I would like people to communicate with me". The example we were given was as follows:

How I normally communicate:
I am able to speak in sentences but I find it very difficult to explain my point of view clearly, particularly when I am stressed.
I am able to concentrate fully for around 20 minutes before needing a break.
I need time to process information.
I would like to have access to pen and paper so I can jot important information down.

How I would like people to communicate with me:
I need people to use clear simple language.
I need to be given regular breaks.
Use short chunks of langauge e.g. "You're staying here for now" pause "You need to have some tests" pause.
Speak a little slower than you would normally.
I need things to be written down.

While I was reading this, I began to get quite pissed off. I thought the idea of a communication passport in a setting like a hospital might be quite good, but then I wondered: at what point do I get to ask for the doctors and nurses to hand over their communication passports? What about a list of all the ways they struggle to communicate clearly too. Why is it always the autistic person that has to explain their problems, like we're apologising for the way we are. It seemed a bit patronizing too.

I explained how I was feeling to the group and there was general agreement.

I suggested an NT version of this might have things like: "I am able to speak in sentences but I find it very difficult to be precise." and "I compulsively ask questions that I don't actually want the answer to e.g. How are you?"

It was then suggested that a mock communication passport, written by autistic people for NTs might be a good learning tool for professionals who work with autistic people.

So I wanted to put it to all of you... any ideas for what could go into such a passport? Sort of comical but also meaningful examples.

 

[tazz]

This is what I have so far:

NT Communication Passport

How I normally communicate:
"I am able to speak in sentences but I find it very difficult to be precise."
"I am able to hear very well but I have a listening impairment."
"Sometimes I will not explain things fully, particularly when I'm stressed."
"I usually talk in one constant stream without pausing much."
"I will talk simultaneously with others."
"I am verbal, but I mainly use facial expressions, tone of voice and body language to communicate."
"I will compulsively ask questions that I don't really want an answer to e.g. How are you?"

How I would like people to communicate with me:
"I need people to be brief, not precise. Vague and fast is better than detailed and accurate."
"Speak much faster than you normally would."
"Don't pause to think before responding to me."
"Don't use blunt or straightforward language because I will get offended, angry or upset."

 

[tree]

Looks like it would surely prompt discussion in a meeting.

 

[Neonatal RRT]

One of the things that the social workers can do is prepare a "communication passport". The idea is that in certain scenarios, such as in a hospital setting, you could hand it over to the staff so they have a written summary of any difficulties you have with communication and a prepared statement about how they can make it easier for you to understand what's happening. It has two sections: "How I normally communicate" and "How I would like people to communicate with me". The example we were given was as follows:

While I was reading this, I began to get quite pissed off. I thought the idea of a communication passport in a setting like a hospital might be quite good, but then I wondered: at what point do I get to ask for the doctors and nurses to hand over their communication passports? What about a list of all the ways they struggle to communicate clearly too. Why is it always the autistic person that has to explain their problems, like we're apologising for the way we are. It seemed a bit patronizing too.

As someone who works in a large metropolitan hospital, my first impression would be to laugh, but my second impression is more empathetic and I do agree, not everyone in the medical field knows how to communicate well with patients and families.

Within this context of communication, what I find, in my 35+ years, is that hospital staff can be broken down into certain categories: (1) People who are very knowledgeable and can use plain language accurately. (2) People who think they are knowledgeable and struggle to use plain language accurately. (3) People who will push tough questions to the doctor and won't be able to accurately answer your questions at all. The "I don't know, I just work here" sort of people.

Now, having said that, because most people, even within the medical field, do not understand what it means to be autistic, they fall back upon what they have experienced with autistic children or what is presented in the media, which is typically NOT how an adult autistic may present. Some may see "autism" when reading the chart, then falsely assume that you are "low-functioning" before even walking into the room. You risk receiving a greeting more suited to a child, rather than an adult. PLEASE be quick to nip that in bud. Better to make them the fool than be treated like a child.

When I was young and stupid, I made that mistake with an adult with severe hydrocephalus and severe cerebral palsy. I walked in, saw this poor person, body wracked with contractions, twisted spine, giant head, and was thinking he might not be able to even communicate, let alone have the intelligence of a small child. WRONG! This guy greeted me before I could say anything and was extremely intelligent and communicated very well. Surprise! I felt like the fool on the inside. Thank the Lord, I didn't insert my own foot in my mouth. I learned a lesson that day. So, now, even with children, I speak to them as if they were adults. I speak to them, and have their parents listen, not the other way around.

The irony is that health care, like engineering, the STEM fields, etc. are one of the top professions for autistics. Obviously, these are ASD-1/Asperger's variants with good coping and executive functioning skills, but autistic none-the-less. I have known physicians, nurses, respiratory therapists, biomed technicians, etc who were on the spectrum. Surgeons have a relatively high incidence of autism, and even if not, many do have some similar traits.

 

[tazz]

my first impression would be to laugh

Thanks for your thoughts as always. Could you elaborate a little on this - I didn't get what you mean? Laugh for what reason?

 

[Neonatal RRT]

Thanks for your thoughts as always. Could you elaborate a little on this - I didn't get what you mean? Laugh for what reason?

I was pointing out the first impression and the arrogance of how a health care worker might think if presented with this idea. It's that knee-jerk response. That cognitive bias that can get us into trouble. Like I suggested, we need to step back, take in the perspective, and rethink our response.

 

[tree]

step back, take in the perspective, and rethink our response.

Actually using the NT Passport as a tool, a means for people
to consider how their own attributes may come across to others,
is the best hope for presenting it.

 

[tazz]

Actually using the NT Passport as a tool, a means for people
to consider how their own attributes may come across to others,

yes, totally. And remember that the context for this is to use it during training. The autism service I was attending also run courses for professionals and carers who come into contact with autistic people. It was suggested that a mock communication passport, presented to the people on such a course, would help them to understand how their own communication is less than perfect sometimes.

And in particular my point was - if a conversation between patient and nurse/doctor has difficulties, it's not right to put all the responsibility on the autistic person to explain their issues and come up with suggested solutions. Maybe the NTs involved should also be expected to give some thought to their communication issues and spend some time figuring out how to make things go more smoothly too.

 

[Neonatal RRT]

This is what I have so far:

NT Communication Passport

How I normally communicate:
"I am able to speak in sentences but I find it very difficult to be precise."
"I am able to hear very well but I have a listening impairment."
"Sometimes I will not explain things fully, particularly when I'm stressed."
"I usually talk in one constant stream without pausing much."
"I will talk simultaneously with others."
"I am verbal, but I mainly use facial expressions, tone of voice and body language to communicate."
"I will compulsively ask questions that I don't really want an answer to e.g. How are you?"

How I would like people to communicate with me:
"I need people to be brief, not precise. Vague and fast is better than detailed and accurate."
"Speak much faster than you normally would."
"Don't pause to think before responding to me."
"Don't use blunt or straightforward language because I will get offended, angry or upset."

Just so you know, and this is within the context of our own hospital, the admitting RN will have an admission questionnaire. Part of this will cover topics like "How best do you learn?" "Any communication or language difficulties?" It's here, at this point where your communication passport would be most useful.

As an inclusive institution dealing with all cultures, languages, disabilities, etc. it is important that we discuss how best to communicate with each other.

 

[tazz]

Yes I've experienced this too and it is a good development in hospitals - it didn't used to be like that. I like it.

Its implementation is somewhat patchy though. The admitting RN fills out a form and makes notes. In my experience, the consultant that visits in the morning has never read it. And the temporary nursing staff that are filling in for staff shortages, particularly over night, also don't read it.

 

[LadyS]

NT (maybe)
How I want people to normally communicate with me:

- Don't bring up anything other than small talk unless I suggest a more serious discussion first.
- You must acknowledge my feelings so I feel more secure about myself.
- Talking about people and mainstream topics is more comforting than talking about abstract ideas and things that don't affect me directly.
- If we do broach abstract concepts I rather stay in a shallow level rather than deep dive so I can easily switch back to small talk so that I can keep contributing to the conversation.
- I need multiple affirmations that I'm a good person/friend/family member/coworker etc.

Very stereotypical and meant to be taken comically.. so have to acknowledge they don't all think like this. But I pulled a lot from my own experience within my social circle. Sad but true. I need a new one.

 

[tazz]

@LadyS Yes I think the overall idea is that this would be presented to people on a training course and it would be pointed out that it's likely quite stereotypical and more "food for thought" than something to be taken at face value.

Thanks for taking the time. Excellent list.

 

[Neonatal RRT]

The other variables to consider:
1. Your RN will likely be your best advocate. With change of shift, report will be given, and hopefully, this information gets passed on from RN to RN.
2. Information is placed into the chart, but in the modern era, things like this are often buried within several pages of electronic data. In other words, the respiratory therapists, the doctors, the physical therapists, and all the rest of the staff coming into your room throughout the day, shift after shift, often do not see this sort of data. The reason for this is that, as a respiratory therapist, my electronic view in the chart is different than that of the nurse, which is different than that of the physician, which is different than that of the physical therapist, and so on. We don't see the same things on our home screen. We have totally different views. That said, people other than the RN, might not see your communication preferences. You might have to think about something like a laminated sign to be posted on the outside of your door, or something of that order. If it's in a hospital setting, it will need to be wiped down frequently, so it can't be simply paper, cardboard, etc.

 

[Neonatal RRT]

The more and more I think about this idea, the more I am liking it.

Whether you are autistic, deaf, blind, have a tracheostomy tube in your neck, a child, an elderly person, don't speak the language, from a different culture, whatever the situation is, I am thinking a sign on the door, something simple and to-the-point would be helpful. So many times, as healthcare workers, we just walk into a room for the first time sometimes assuming the person in the bed can communicate like we do, and it's clearly NOT the case. We don't know this other person beyond their health diagnosis, labs, and statistics. It's going to take me a while to get to know you. It's that first meeting that can make the best or worst impression and is most important.

I think it would be helpful to have a sign on the door. Read it before we knock on the door.

 

[LadyS]

Thinking about the medical aspect of it I agree it would spare me mental anxiety if I could put up a sign about about my social anxiety. Sometimes I'll get nurses that do their jobs quickly and quietly and leave for which I am truly grateful for but I dread the overly chatty ones who expect you to not only have a verbal exchange with them, but agree with everything they say. I get that they are trying to be friendly to make nervous people relax but for people like me, it has the opposite effect. And not everyone is always having the same kind of day as them - nor can fake it.

And while we're at it - how about doing the same for other services like barbers and beauticians, services where you have to spend a good chunk of one-on-one time with.

 

[Alexej]

Here is a booklet that I have come across that might gives some ideas.

You might develop this one

 

[Mary Terry]

The more and more I think about this idea, the more I am liking it.

Whether you are autistic, deaf, blind, have a tracheostomy tube in your neck, a child, an elderly person, don't speak the language, from a different culture, whatever the situation is, I am thinking a sign on the door, something simple and to-the-point would be helpful. So many times, as healthcare workers, we just walk into a room for the first time sometimes assuming the person in the bed can communicate like we do, and it's clearly NOT the case. We don't know this other person beyond their health diagnosis, labs, and statistics. It's going to take me a while to get to know you. It's that first meeting that can make the best or worst impression and is most important.

I think it would be helpful to have a sign on the door. Read it before we knock on the door.

My profoundly deaf sister, who lip reads and uses sign language and is NT, would appreciate your comments. Poor communication between health care provider and patient is not limited to ND vs. NT communication.