Has Any Parent Had a Child With Autism Need Medical Hospitalization?

[Laura K]

Has any parent ever gone through having their any age child who has autism be hospitalized for a serious condition?

My son is 26 and had a hospitalization in November. It was touch and go there for awhile and somehow I got the strength to be there by his side because I knew that’s what he needed.

He is doing a lot better now. Heart medication replaced the need for surgery. His strength and feeling well has pretty much come back, but I feel like I’m just recovering from the tension and daily worry while he was in the hospital. I know I was essentially sleepless and going on coffee and protein bars. I didn’t realize it was going to have such a physical effect on me, not to mention emotions.

We’ve come through the worst of it, but it was a wake up call to not knowing what’s coming around the next corner!!

 

[Thinx]

I had to go into hospital recently which I never have previously except 1 night. The sensory overload was full on. I really did not enjoy hospital. But the bigger picture is I had a vital op and was very lucky to get it. No visitors were allowed cos of covid. I did struggle to interpret interactions with staff and they were definitely not getting some of how I am. Mostly I was afraid and overwhelmed, but also my strategies kicked in and I tried to be who I needed to be for this new environment. It's a kind of protective creative masking I guess. Did my best. Got along alright with fellow patients. Awesome medical care was given. The environment sucked.

You sound like you worked hard to assist your son. Sometimes maybe too hard? He's an adult. Can he be weaned off a bit and start to strategise for himself? Mom won't live forever. Gives him a better chance at life.

 

[Laura K]

I had to go into hospital recently which I never have previously except 1 night. The sensory overload was full on. I really did not enjoy hospital. But the bigger picture is I had a vital op and was very lucky to get it. No visitors were allowed cos of covid. I did struggle to interpret interactions with staff and they were definitely not getting some of how I am. Mostly I was afraid and overwhelmed, but also my strategies kicked in and I tried to be who I needed to be for this new environment. It's a kind of protective creative masking I guess. Did my best. Got along alright with fellow patients. Awesome medical care was given. The environment sucked.

You sound like you worked hard to assist your son. Sometimes maybe too hard? He's an adult. Can he be weaned off a bit and start to strategise for himself? Mom won't live forever. Gives him a better chance at life.

You’re very perceptive and you’re very right, mom won’t live forever. As he gets older, so do I and that’s very much on my mind lately. A lot since the hospitalization because, as you observed, I was so involved.

The good news is that several years ago he did move out on his own to a residential home with 2 other individuals also in their 20’s. So that step towards independence has been taken and we knew it was the best thing for his future to shape his own life and make more of his own decisions.

I really like your concept of him strategizing more for himself. It’s very good that you were able to do that during your hospitalization under the very less than ideal circumstances. My son’s conditions were also less than ideal with an IV line, monitors going, lights, noises from the hallway. Your insight has made me realize that he, too, probably,min his way did his own strategizing. Hospital food was beyond bad and he wasn’t eating. Someone got the idea to bring the dietitian in and he told her what he’d like and lo and behold, it showed up for dinner. I think that bit of control during the hospital stay helped a lot.

 

[Thinx]

You’re very perceptive and you’re very right, mom won’t live forever. As he gets older, so do I and that’s very much on my mind lately. A lot since the hospitalization because, as you observed, I was so involved.

The good news is that several years ago he did move out on his own to a residential home with 2 other individuals also in their 20’s. So that step towards independence has been taken and we knew it was the best thing for his future to shape his own life and make more of his own decisions.

I really like your concept of him strategizing more for himself. It’s very good that you were able to do that during your hospitalization under the very less than ideal circumstances. My son’s conditions were also less than ideal with an IV line, monitors going, lights, noises from the hallway. Your insight has made me realize that he, too, probably,min his way did his own strategizing. Hospital food was beyond bad and he wasn’t eating. Someone got the idea to bring the dietitian in and he told her what he’d like and lo and behold, it showed up for dinner. I think that bit of control during the hospital stay helped a lot.

Yes, everything you say applied during my stay in hospital too. Lights, IV lines, noise, having to listen to descriptions of other patients conditions that scared me, smells of cleaning fluids, awful smells of the awful foods, and I also stopped eating. Well, my body did. I just couldn't, despite being hungry. Just getting back from that now. Still I coped, and so did your son.

Yes I am sure you are right that small area where he was heard was important. That happened a couple of times for me too. I concluded that with more flexibility the situation could have been better for me, but I felt the issues were mainly built into the systems, and related to aspects of communication not necessarily recognised as important in a health caregiving package. My health issues were being processed, my individuality was just along for the ride.

Nevertheless I am hugely grateful for the op and the medical care. Literally a lifesaver. It would be churlish to ask for more, though big picture I do wish we could get that aspect of healthcare nailed down better. It likely affects the neurodivergent and others who are vulnerable, disproportionately.

 

[Yeshuasdaughter]

My daughter had terrible asthma when she was younger. If she even got the slightest cold, she'd be in the hospital. But now that she's a teenager, she's much stronger and healthier.

@Laura K , I am so sorry that your sweet dear son is going through all that. It breaks my heart. I'm praying for him.

 

[Neonatal RRT]

Has any parent ever gone through having their any age child who has autism be hospitalized for a serious condition?

My son is 26 and had a hospitalization in November. It was touch and go there for awhile and somehow I got the strength to be there by his side because I knew that’s what he needed.

He is doing a lot better now. Heart medication replaced the need for surgery. His strength and feeling well has pretty much come back, but I feel like I’m just recovering from the tension and daily worry while he was in the hospital. I know I was essentially sleepless and going on coffee and protein bars. I didn’t realize it was going to have such a physical effect on me, not to mention emotions.

We’ve come through the worst of it, but it was a wake up call to not knowing what’s coming around the next corner!!

From the perspective of a health care worker in a busy children's hospital, communicating with our team as to a child's autism, how the child responds to anesthetics, how they wake up in strange places, things they like,...etc. are often well received from our team. Children with "special needs" do need that extra bit of unique care, so we depend upon good communication beforehand. I don't know your child,...and neither one of us need any surprises, if you know what I mean.

As an adult, and dealing with an adult health care team, I would think the same rules apply.

 

[Streetwise]

Yes, everything you say applied during my stay in hospital too. Lights, IV lines, noise, having to listen to descriptions of other patients conditions that scared me, smells of cleaning fluids, awful smells of the awful foods, and I also stopped eating. Well, my body did. I just couldn't, despite being hungry. Just getting back from that now. Still I coped, and so did your son.

Yes I am sure you are right that small area where he was heard was important. That happened a couple of times for me too. I concluded that with more flexibility the situation could have been better for me, but I felt the issues were mainly built into the systems, and related to aspects of communication not necessarily recognised as important in a health caregiving package. My health issues were being processed, my individuality was just along for the ride.

Nevertheless I am hugely grateful for the op and the medical care. Literally a lifesaver. It would be churlish to ask for more, though big picture I do wish we could get that aspect of healthcare nailed down better. It likely affects the neurodivergent and others who are vulnerable, disproportionately.

I don't think in my area specifically it's not just the neuro divergent I think it's could be somebody neuro typical with mental illness, if you have a physical illness you are treated completely differently, the irony is a lot of people who are mentally ill don't want to go to accident and emergency but are forced to, when I was taken straight to a treatment bay another man was brought in who was obviously mentally ill but self medicated with alcohol and hadn't actually wanted to come to accident and emergency, but he had been forcibly brought, he wasn't interested to say the least

 

[Magna]

I'm glad your son is feeling better, @Laura K

My mom died four years ago. I believe she was on the spectrum. One of many other reasons was that she had sensory sensitivity issues like I do. She battled Lymphoma and developed a mysterious upper respiratory infection that no course of antibiotics or treatment could help against. That was in January of 2018. Covid in the U.S. that early perhaps?.......

Anyway, I'm convinced that what really killed her was exhaustion from sensory overload. She was only able to doze off for at most, five minutes every hour or two for several weeks on end. She was killed from exhaustion. She was on either a ventilator or a CPAP machine for nearly all of the last few weeks. I could not bring her hearing protectors and could not put a sleep mask on her because of the face and headgear.

• Near constant nursing incidences. Even in a darkened room, the opening of the door, bright station outside, sounds from outside the room...goodbye any possibility of slumber.
• Constant air filtration drone at a fairly high volume level.
• Hospital smell, hand sanitizer smell, etc.
• None of the caregivers thought anything about the importance of sleep for her.

A horrible place for people with sensory issues. The only place I could think of that would be worse would be prison (sounds, smells, lack of peace, etc).

I told my wife after that if I ever need hospitalization, she simply must outfit me with earplugs and a sleep mask and I told her if the nurses or doctors were to object, firmly tell them to **** off.

 

[Laura K]

My daughter had terrible asthma when she was younger. If she even got the slightest cold, she'd be in the hospital. But now that she's a teenager, she's much stronger and healthier.

@Laura K , I am so sorry that your sweet dear son is going through all that. It breaks my heart. I'm praying for him.

 

[Laura K]

Thank you so much for your kind words, I truly appreciate them. He is so much better now, and I am starting to come down from the stress and worry of the experience.

I'm glad your daughter is better. I know someone who's son also had severe asthma when he was a child and it greatly diminished in the teen years and beyond.

 

[Laura K]

@Magna it is very sad that sleep was not factored into your mother's care needs. Hospitals are a mass of one sensory overload experience after another. Especially now with covid and low nursing staff, how can the sensory overload facter be handled? Ideally a private room with lowered lights and noise control but it was the complete opposite when my son was hospitalized. The only mercy was that he was given something to help him relax and that's only because I was doing ASD 101 with the staff that came onto the room.

In a perfect world, there would be hospitals with tailored environments for those with sensory overload. Lighting modulation alone would work wonders. But I'm afraid we are far from that.

I'm so sorry about your mother.

 

[Laura K]

From the perspective of a health care worker in a busy children's hospital, communicating with our team as to a child's autism, how the child responds to anesthetics, how they wake up in strange places, things they like,...etc. are often well received from our team. Children with "special needs" do need that extra bit of unique care, so we depend upon good communication beforehand. I don't know your child,...and neither one of us need any surprises, if you know what I mean.

As an adult, and dealing with an adult health care team, I would think the same rules apply.

From the perspective of a health care worker in a busy children's hospital, communicating with our team as to a child's autism, how the child responds to anesthetics, how they wake up in strange places, things they like,...etc. are often well received from our team. Children with "special needs" do need that extra bit of unique care, so we depend upon good communication beforehand. I don't know your child,...and neither one of us need any surprises, if you know what I mean.

As an adult, and dealing with an adult health care team, I would think the same rules apply.

It's heartening to see you tell what is done in your hospital for special needs children. This will go a long way in making a hospital stay as easy as possible. And impact the way they feel about future health care. A parent can have so much stress reduced too by what you've described.

 

[Magna]

@Magna it is very sad that sleep was not factored into your mother's care needs. Hospitals are a mass of one sensory overload experience after another. Especially now with covid and low nursing staff, how can the sensory overload facter be handled? Ideally a private room with lowered lights and noise control but it was the complete opposite when my son was hospitalized. The only mercy was that he was given something to help him relax and that's only because I was doing ASD 101 with the staff that came onto the room.

In a perfect world, there would be hospitals with tailored environments for those with sensory overload. Lighting modulation alone would work wonders. But I'm afraid we are far from that.

I'm so sorry about your mother.

Thank you, Laura. I agree with you about hospitals. It's sadly ironic, but the most sensory friendly healthcare facility I've seen to date was a non-profit hospice facility that my sister-in-law died in. The nurses were all Catholic nuns and it was obvious that the patients truly were top focus. The lighting was subdued and the entire facility was kept at a noise level at or just above whispers. There was a dramatic difference in how calm things were there. Incomparable compared to the hospital my mom was in.

Thanks again for your sentiments.