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High Functioning ASD And The Inpatient Stay

How can you provide the best care for the high functioning ASD patient?

Nurses General Nursing Article   posted

Nurse SMS specializes in Critical Care; Cardiac; Professional Development.

Caring for an individual of any age with high functioning ASD (formerly known as Asperger's Syndrome) can be both challenging and rewarding. This article seeks to give tips on their experience and how you can best assist them through a difficult time as an inpatient.

High Functioning ASD And The Inpatient Stay
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It goes without saying that enduring a hospitalization can rattle even the most grounded of persons. For most people, the uncertainty of illness combined with the expense are enough to create an anxiety diagnosis on top of whatever else is going on. The loss of routine, favorite foods, pleasurable activities and socialization only add to the challenge of a hospital stay. The patient with a comorbid high-functioning Autistic Spectrum Disorder (ASD) faces all these things as well, but through a slightly different lens. As medical professionals, the adaptability of a healthcare professional in caring for a patient with high functioning ASD can make a significant difference in his or her ability to adjust to the rigors of a hospital stay and heal.

Generalized Typical Presentation of ASD

Individuals with high functioning ASD, formerly known as Asperger’s Syndrome, as a generalization, process social endeavors differently than “neuro-typical” people. As the name implies, there is a “spectrum” component to this disorder, making generalizing both difficult and potentially harmful. A consistency with most people diagnosed with ASD is an inflexibility to routine changes. Naturally, this creates an automatically tense atmosphere for the patient whose entire world has been altered by the schedule of the hospital versus that of their own world, which often has been created to decrease stress and optimize their talents and tastes.

While the hospital’s schedule will differ from the patient’s, its predictability can eventually enhance the patient’s coping, particularly during longer stays. If the patient knows when to expect medications, vital signs, therapy and physician visits, even in a generalized way, it lowers anxiety and increases their coping. Try hard to maintain as strict of a schedule as possible with an ASD patient, for their sake and for your own.

Socializing with a high functioning patient with ASD

Patients with ASD do have social needs and crave interaction. However, they also have intense interests that can consume them even in the most disruptive of places. While he or she may appreciate the predictability of the hospital schedule, they may struggle with changing caregivers and any lack of consistency, both in processes and in the level of interaction desired by the caregiver. Take the patient’s cues quite literally; subtlety will likely not be on the menu. If they are not openly conversant, pleasantly do your tasks and allow them to retreat inside themselves. This is more a sign of comfort with you than dislike of you.

Interruptions in thoughts, activities or even television shows can trigger hostility or anxious reactions that may seem shocking and out of proportion. It may be helpful to find out from the patient directly how they like their day to go and seek their input on the schedule for the day. Writing this on the white board and sticking to it can go a long way to reducing the likelihood that your patient is stressed. Recognize that changing shifts and varying caregivers will be a huge stress for this patient. Bedside report, formal good-byes and introductions while going over the patient’s preferences can ease the strain for them, as well as for the oncoming shift.

Sensitivity to Sensory Input

It is possible your patient with high functioning ASD may struggle with the sounds, smells, tastes and tactile input that comes with a hospitalization. They may find it challenging to tolerate the ID band on their wrist. Some may find the linens of the hospital disruptive on their skin. Others may struggle when the IV pump beeps, or even from the soft, barely perceptible sound the pump makes as the gears move to deliver medication at the proper drip rate. The taste or scent of medications, cleaning supplies or even you (perfume or lotions anyone?) can cause this patient a great deal of stress and possible acting out due to overstimulation.

Accommodate the patient however is reasonable. A family member bringing sheets from home or their own pillow may help. Activities that keep them engaged and able to “check out” from their surroundings can help a great deal. For children, often small motor activities are enticing and helpful - video games, Legos, building blocks, arts and crafts, even being allowed to decorate their room can all help them cope with a world that makes little sense and offers little comfort while in the hospital. Adults may enjoy similar activities and certainly can be capable of speaking with you about what might make their stay easier for them.

Conclusion

While an individual with high functioning ASD can be a challenge, they can also be your easiest patient. They tend to be rule followers, if they understand the rules, and tend to hold others to the same standards they hold for themselves. Frequently they are the opposite of needy once they understand and participate in the organization of the day to day and hour to hour rhythms of their stay. Offer social contact and refrain from taking lack of eye contact or in-depth conversations personally. This patient may, if they like you, perseverate on a favorite topic that can make it difficult to retreat from their room to attend to other tasks, but these monologues will make them feel heard and understood, even if you have to cut them short. Offer as much as you can reasonably give and seek their input; most know their quirks well and are happy to share them with you. Recognize the beautiful world that lies in the brain of a patient with high functioning ASD and you will be most of the way toward giving them a good stay and yourself a fulfilling shift.

You did what you knew how to do; when you knew better, you did better. - Maya Angelou

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londonflo specializes in oncology.

WOW!, I have been waiting for this article and it Is so informative. I can see my mistakes but also have found I have done OK with some things.

8 hours ago, Nurse SMS said:

While the hospital’s schedule will differ from the patient’s, its predictability can eventually enhance the patient’s coping, particularly during longer stays.

In oncology we often have patients with us for a couple of weeks. It stresses out any patient when no one follow the same schedule or communicates what works. I have worked with some very caring people who start out the day with a planned schedule and hope we can follow it into the evening but that takes commitment and planning. Now I know how important this is.

As mentioned a pillow or comforter from home always helps and lots and lots of pictures. What about pets? 

As ASD patients age, we need to be mindful of the ramification this brings to adult units. I kept stressing at my hospital that we need to ask patients if they experience PTSD, along with all the other important questions we ask about  - domestic violence, last pap smear etc.. Would asking specifically about ASD help us collect the information ?

8 hours ago, Nurse SMS said:

. This patient may, if they like you, perseverate on a favorite topic that can make it difficult to retreat from their room to attend to other tasks,

This is how I learned all that I know about the Kentucky Derby!

Thank you Nurse SMS. 

HiddencatBSN specializes in Peds ED.

So many autistic folks are actually pushing for functioning levels to be no longer used, as individuals have different levels of needs and categorizing like this hinders individual assessment. 

Due to how boys and girls are socialized differently as well, “classic” autism traits often present very differently in women and girls who are autistic. You might not see the stereotypical rigidity for example.

 

HiddencatBSN specializes in Peds ED.

And most autistic people prefer identity first language, so unless asked otherwise the default should be “autistic patient” and not “patient with autism/asd.” There’s a ton of self advocacy going on right now within the autistic community and it’s important to seek out and listen to autistic voices on their needs with their care.

Edited by HiddencatBSN

hppygr8ful specializes in Psych, Addictions, Elder Care, L&D.

As a person who works with ASD patients and is married to a successful if oddly quirky person with VHFASD (Very high functioning ASD) I found the article helpful on an introductory level but it stops short without really giving the full scope of the problem. 

First - many autistic people regress when outside their normal routine and the term high functioning should not be misunderstood to mean that the person functions at a high level. These descriptors are often very subjective and even among experts there is a lot of disagreement on how to classify functioning level on the spectrum.

Staffing should be done in such a way as to normalize a routine and visiting rules may have to be relaxed to allow families and care givers to drop by at bedtime or other challenging times (hygiene and meal times) to help the patient have an experience as close to what they are used to.

The rest of the article was great!

Hppy

londonflo specializes in oncology.

42 minutes ago, hppygr8ful said:

Staffing should be done in such a way as to normalize a routine and visiting rules may have to be relaxed to allow families and care givers to drop by at bedtime or other challenging times

I think we do not have a limit on visiting hours unless the patient is in ICU. 

4 hours ago, HiddencatBSN said:

And most autistic people prefer identity first language, so unless asked otherwise the default should be “autistic patient” and not “patient with autism/asd.”

Can you explain this a bit more? I appreciate you sharing the info, it's just different than we are taught to think of patients and their conditions (we're taught to think of a given situation as...a person...who has a particular condition). I'm sincerely interested in the rationale.

Thx!

HiddencatBSN specializes in Peds ED.

1 hour ago, JKL33 said:

Can you explain this a bit more? I appreciate you sharing the info, it's just different than we are taught to think of patients and their conditions (we're taught to think of a given situation as...a person...who has a particular condition). I'm sincerely interested in the rationale.

Thx!

So, the rationale is that autism is a neurotype and not a condition and that being autistic is an  inseparable part of their identity. You would never say “a person with gay” or “a person with Irish” and being autistic is a similarly defining characteristic. Many folks in the disability rights movement express similar thoughts, as well as the Deaf community. 
 

The Autistic Self Advocacy Network (ASAN) is a great resource and I thought this article is a good look at identity-first versus person first: https://autisticadvocacy.org/about-asan/identity-first-language/

This is the article heavily cited in the APA’s current position on using the terminology the group in question prefers: https://pubmed.ncbi.nlm.nih.gov/25642702/

I’ve often craved for the whole world to be perpetually silent.... any repetitive beeping just makes me want to lash out and scream. 

Spot on article. 

Nurse SMS specializes in Critical Care; Cardiac; Professional Development.

9 hours ago, HiddencatBSN said:

So, the rationale is that autism is a neurotype and not a condition and that being autistic is an  inseparable part of their identity. You would never say “a person with gay” or “a person with Irish” and being autistic is a similarly defining characteristic. Many folks in the disability rights movement express similar thoughts, as well as the Deaf community. 
 

The Autistic Self Advocacy Network (ASAN) is a great resource and I thought this article is a good look at identity-first versus person first: https://autisticadvocacy.org/about-asan/identity-first-language/

This is the article heavily cited in the APA’s current position on using the terminology the group in question prefers: https://pubmed.ncbi.nlm.nih.gov/25642702/

I love this information - thank you for expounding on it. Opening the discussion up was the ultimate purpose of the article and you have done that beautifully.

Nurse SMS specializes in Critical Care; Cardiac; Professional Development.

15 hours ago, londonflo said:

WOW!!, I have been waiting for this article and it Is so informative. I can see my mistakes but also have found I have done OK with some things.

In oncology we often have patients with us for a couple of weeks. It stresses out any patient when no one follow the same schedule or communicates what works. I have worked with some very caring people who start out the day with a planned schedule and hope we can follow it into the evening but that takes commitment and planning. Now I know how important this is.

As mentioned a pillow or comforter from home always helps and lots and lots of pictures. What about pets? 

As ASD patients age, we need to be mindful of the ramification this brings to adult units. I kept stressing at my hospital that we need to ask patients if they experience PTSD, along with all the other important questions we ask about  - domestic violence, last pap smear etc.. Would asking specifically about ASD help us collect the information ?

This is how I learned all that I know about the Kentucky Derby!

Thank you Nurse SMS. 

I think any diagnosis of ASD should be part of the medical history and that asking the patient themselves or their caregivers if necessary would be the right thing to do.

I am glad you found the article helpful!

Nurse SMS specializes in Critical Care; Cardiac; Professional Development.

15 hours ago, londonflo said:

WOW!!, I have been waiting for this article and it Is so informative. I can see my mistakes but also have found I have done OK with some things.

In oncology we often have patients with us for a couple of weeks. It stresses out any patient when no one follow the same schedule or communicates what works. I have worked with some very caring people who start out the day with a planned schedule and hope we can follow it into the evening but that takes commitment and planning. Now I know how important this is.

As mentioned a pillow or comforter from home always helps and lots and lots of pictures. What about pets

As ASD patients age, we need to be mindful of the ramification this brings to adult units. I kept stressing at my hospital that we need to ask patients if they experience PTSD, along with all the other important questions we ask about  - domestic violence, last pap smear etc.. Would asking specifically about ASD help us collect the information ?

This is how I learned all that I know about the Kentucky Derby!

Thank you Nurse SMS. 

Pets would definitely be very welcome by the patient, if they have any, but obviously different hospitals will have different policies about this. Family can bring video from home or even arrange for Facetime connections when possible, of course, but Covid has everything so locked down right now. 

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