Being sick while autistic

[PastelPetals]

A month ago my ears started to ring. Not all the time mostly when I stood up accompanied by a fullness that would then pop. My parents were going out of town at this time and I was so stressed about that so I didn't pay it much notice I was a bit more tired than usual but I am prone to fatigue so again didn't pay much attention.

When my parents came back four days later I had a day where I started feeling less good I had a headache behind my right eye and the ringing was still going on. I mentioned both to my parents but it could be a one off thing and hey i'm still pretty stressed. I have a night where I am nauseated and uncontrollably shaking and I can't regulate my temperature...that's odd.

I stop wanting to eat much and the ringing keeps on along with neck pain and joint pain and crackling in my ears when I yawn. I am depressed due to outside factors so maybe that's it....then two weeks ago I start having meltdowns every single day sometimes more than once I am miserable and tired and my whole family is frustrated with me. The ringing keeps on.

Then yesterday I go to urgent care. I have a sinus infection and an ear infection. I have had both for a month. I didn't connect my symptoms to anything more than stress or didn't pay attention to them much at all but more than that I didn't communicate.

I tend to have two modes when something is wrong: act oddly cool and unbothered as it just leaves my mind or act as if the world is caving in. I tended to have the first response up until this week when it got so painful. Even then I didn't see it as pain I just was upset. Like a baby pull at their ear when they have an ear infection but not able to use words. That's the skill set I have.

After I got back my parents and I had a talk about how it makes sense I would be acting more prickly since I had been sick for so long but that we need to find ways to work around the fact that I often don't know what I am feeling and also when I tell people I am in pain I do it in ways that seem like I am just having a meltdown or I don't think it's a big deal. I also don't have a big impulse to look for help or know what words to say. Of course part of that is I just need to figure out how I am feeling inside. I am now taking some antibiotics and resting.

Of course this is also impacted by the fact that I am dependent on my parents for most things so I can't just go and drive to urgent care by myself. I don't know how to drive and I also need help talking to them most of the time so my parents will help.

Does being autistic affect the way you feel when sick? Or how you look for help?

TL; DR I had a sinus infection and an ear infection for a month and didn't fully notice till it was so bad I could not function. I have no interoception or communication skills (well that's a slight exaggeration)

 

[Wulven]

I try to avoid getting sick. There's little money for doctors or medicine. But, when I do. I wait until it's symptoms show. Then treat it with what ailment it seems to act like. Outside of this I try to keep healthy to avoid sickness. I have really bad nightmares when I'll.

 

[Suzette]

I usually don't notice I am sick until my symptoms are horrible too. When I was working I would get sent home for being sick occassionally. I feel guilty that I might have made someone else sick!

 

[Ronald Zeeman]

Happy I live in Canada

 

[Sarah S]

One of the criteria's for getting ASD diagnose is actually higher pain threshold (ie heat ,cold , pain etc.... )

I actually went 2 weeks (home sleeping all days i was that sick from the pain ) after completely managed to cruch my entire Sholder to 1000 pieces after a an accident with me falling over straight forward receiving my self with my arms . I thought it was a severe strain. It wasn't my entire shoulder was in pieces . So when i ran out on some prescriptions pain killers i had from an earlier surgery (all my wisdom tooths out ) the doc sent me straight down to emergency and there they found i was all broken in the shoulder and a day after it was under the knife for 3 hoers and a LONG way back. ( the docs performed miracles and i only got 15 % invalidity on the arm so after a lot of work its utilest usable in most things but cant lift it above my breasts tho.

Also as im also born with lipp and pallet cleft i had ear infections all the time as a child so belive me i know how much that hurts and i cried at nights to get my mom to come and see me which she of course did every time bless her (heart )

As for how do i look for help as an adult ? Simple i don't until its severe or life threatening as i live all alone (needles to say when i worked i stayed home if it was something contatios )

 

[Progster]

I notice the symptoms, but if I don't think it's serious I won't do anything about it until it becomes critical. If I think it might be serious, I get very anxious and go to the doctor. Many serious illnesses such as cancer or cardiovascular problems can be cured or dealt with if caught early. I hate going to the doctor, hate having medical examinations, but don't want to be ill either.

 

[SusanLR]

I've had medical arts training in University, so, I am pretty aware of my body and a good working
knowledge of what is probably going on.
I hate going to doctors, but, I will if I feel it is something that requires attention.

I've a pretty high pain threshold and have had procedures done without anesthesia that most people would
not even think of doing.
Since I hate heavy duty pain killers and how anesthesia makes me feel, plus how dangerous it is,
I've only let them put me full under for really nasty surgeries the body couldn't stand the pain of,
such as internal operations.

Here I complain of having panic attacks, yet, I seem to have the ability to self induce trance to
under go these things.
Last year I had cataract surgery and implants with no anesthsia. Just eye numbing drops.
Earlier this year a cardiac cath with no anesthesia or pain killers.
A core liver biopsy 11 years ago. No pain killers or anesthesia.
If you can put yourself into a hypnotic state, much can be done without the normal twilight anesthesias
or pain killers. You have to know you can remain perfectly still no matter what is main thing.
And I think having had medical training helps also. Knowing what is going on.

So, as far as sickness, I stay pretty stoic and also look for home remedies before the doctor.

 

[Booknerd515]

Yeah it's affected me for sure. When I first started getting chronic nausea, I had such a difficult time explaining it because I was only used to nausea from throwing up or being carsick or having upset stomach that I didn't know constant stomach cramps were even possible to have. I was only able to tell because I got carsick from going on a trip and I noticed that an anti-carsickness medicine helped relieve my symptoms some. Though I have since told doctors that I get them fairly frequently and since they've been so prolonged many of them think I have a really severe case of Irritable Bowel Syndrome.

I get ringing in my ears every single day, so yeah I get you that it can be really hard to tell if it's serious or not. Recently I had a ear infection, and I only noticed it after accidentally trying to get wax out of my ear too hard and I had to go to urgent care then to get it taken care of though I wasn't given antibiotics as mine was not as severe luckily. I got countless ear infections when I was younger, and once you notice them it's really hard to not notice them but sometimes it can be so difficult to tell that they're coming on.

I also have an extreme amount of difficulty knowing that I have a migraine because I get white and colored spots and lines in my vision constantly from pain. So I'll only know if I have one if my head feels like its pounding on one side or if I can't sit up for a while. People do say I tend to have a pretty high pain tolerance, luckily since I didn't use to and it's only been because of my depression that I've started to feel pain really differently as if it's more of a simple annoyance sometimes, or I wouldn't be able to keep most of my food down since I still struggle with that especially recently due to having an upset stomach for a few weeks. I'm also always thirsty even if I drink more than twelve glasses of water a day, even though I've been tested for various blood sugar problems along with high blood pressure and none of those have come up, I faint pretty much weekly due to syncope.

 

[SDRSpark]

Oh boy. This is a fun one for me...I'm notorious for this.

As a child I had at least two incidents of not showing any symptoms until I was severely ill -

I got up one morning and had a slight scratchy throat, I said to my mom "my throat's a little scratchy, can I have some tea?" so she made me some and there was white gunk in it after I drank it. She thought maybe it was something from the honey that she used so she made a cup again with sugar instead...and the same thing happened. So she looked at my throat. Strep EVERYWHERE. It had gone up into my sinuses at that point. Other than a very slight scratchy throat, I felt nothing.

Another time I had a slight headache, I guess I looked bad, but I didn't feel all that bad. I said I had a slight headache and asked for some Tylenol. Mom said she was keeping me home from school and taking me to the doctor and I couldn't figure out why (I think I actually argued because I didn't feel that bad, I just had a slight headache). So I went outside to play on the swing set, and we had a roofer working who was a family friend, so I amused myself by climbing on his scaffolding (it was the 90s, no one cared about stuff like that back then LOL) until it was time for my appointment. When we got to the doctor, he took one look at me and said "how did that child walk in here? She should have had to been carried!!!" Apparently, I was in such bad shape no one could figure out how I was able to stand or walk. (Let alone climb on scaffolding!!!) I had a severe sinus infection that had spread to my chest by the time I showed any symptoms at all.

Fast forward about 25 years...and I have some stomach pain (it felt just like menstrual cramps but since I'm on the pill, I'm not supposed to have those). It comes and goes for a few days, and I figure I have a minor bug or it's something I ate. Then it comes on and stays...I still figure it's something I ate. Go to work, work a full shift, eat like a horse...in pain the entire time, but I'm pretty tough and no one can tell anything is amiss. It hasn't changed by the next day so I call my doctor - they schedule me an appointment for the following day. I get a fever and the pain gets a lot worse, finally, so I call a friend and have him take me to the ER.

I calmly walk into the ER and say "I think I have appendicitis". Pain is most likely evident on my face but I'm still walking, talking, doing normal things (even if I'm grimacing the entire time I'm doing it). I have to go through a security checkpoint to enter the ER, which I can't help but laugh at, because it's so absurd. (Ever try to raise your arms for a TSA style wand-scan while you have acute appendicitis? LOL yeah. What has this world come to?)

Triage got ahold of me finally and was like "$*%&^($*!!!!" because I had a 103* fever (after having taken Naproxen at home) and my vitals were off the charts bad. The nurse came to collect me to take me to a bed (in the hallway because there were no rooms available, which really concerned the triage nurse) and asked if she could take me out "through the front" because it was faster. I said sure, not realizing what she meant. She took me out through the parking lot and in the ambulance entrance! (That's a heck of a ride in a wheel chair...while trying not to spill the cups of CT contrast that I was supposed to drink.) Immediate IV, which felt cold, my fever was so high by then. Medical staff was very concerned because I was in very bad shape...but I was still able to walk to the bathroom, get dressed myself etc. Emergency surgery that night and three days in the hospital on IV antibiotics because my white blood cell count was high, plus something like 13 days antibiotics at home.... (I felt super strange after surgery asking for pain killers not because I was in pain, but because I couldn't breathe. My abdominal muscles wouldn't function properly to allow breathing but when they asked my pain level I was like...2? But I can barely breathe though! Fortunately the nurse understood. My body reacts to pain that my brain isn't processing.)

Other than those notable incidents, my first sign of getting sick is that anxiety/depression/sensory issues go totally wild - I don't show any physical symptoms for a day or so after that (if I ever do) so I don't know that I'm sick at first (which is unfortunate, because I never make the connection and continue to go to work etc. just thinking I'm having a bad mental health day, when I actually probably have something contagious).

I don't usually bother with painkillers...I may be aware that I'm in pain, but can't be bothered to do anything about it, or think "gee I really should take some aspirin or something" but then I just sort of forget to do it...lol.

At this point I'm low key terrified and think maybe I should have full medical workup to catch all the things that I'm not aware of symptoms of - most things that are really deadly are curable if they're caught early but I tend not to show symptoms until things are severe, and chronic low level things I just sort of adapt to and think they're normal over time.

 

[Sarah S]

I've a pretty high pain threshold and have had procedures done without anesthesia that most people would
not even think of doing..

Same here hate docs and hospitals, dentists since most of my childhood was in and out. Needles in mouth ? Once NEVER again so all mouth surgery im sleeping its that simple. (incl when they took my wisdom tooths and ALL the FEW holes i had fixed.) Pretty much every injury i can manage without i go without Anesthesia & if needed its by gas and me gone to sleep .

 

[savi83]

I don't really have much trust in doctors. Might be due to a few bad experiences growing up. I've never really got sick, it's mainly injuries.

When I was ten, someone fell and landed on my wrist. It hurt at the time, and ached now and again. My parents got sick of me mentioning it that they took me to hospital. We waited five hours for the consultation where the doctor ran a couple of mobility tests and said that there was nothing wrong with it. My parents asked the doctor if they could xray it to put there mind at ease, and the doctor obliged. The xray shown two greenline fractures, one on my ulna and radius, just below the wrist. The doctor couldn't appologise enough.

Another time I injured my back, and kept getting a twinge so went to the doctors. The doctor didn't seem interested, he prescribed me Ibuprofen and told me to get to the gym and a personal trainer will tell me what exercises I need to do. He didn't even examine me.

The last time I went to the doctors I hurt my arm. I did my own research and found out that I had Tennis Elbow. Went to the doctor and they just agreed with my opinion. He told me to rest it and prescribed me Ibuprofen.

They generally haven't filled me with much confidence.

 

[savi83]

Just remembered, another time I sprained my ankle and the doctor bandaged it up. It really frustrated me that I wasn't able to put my weight on it. It didn't stop me trying to force it to work.

 

[QuestJan]

I accidentally ripped the top of my foot open when I was 4 or 5.

My wonderful pediatrician was kind enough to let me poke around and look at bones & ligaments before he sewed it up.

 

[PastelPetals]

UPDATE: My ears are almost never ringing and when they do it's faint. I am not feeling all the way better but I think the infection in clearing up. For the same reasons I state in the original post while I know I have other symptoms I can't tell you much what or how bad that are. (except if I lie down the eye on the pillow side will cry a ton)

 

[Sarah S]

UPDATE: My ears are almost never ringing and when they do it's faint. I am not feeling all the way better but I think the infection in clearing up. For the same reasons I state in the original post while I know I have other symptoms I can't tell you much what or how bad that are. (except if I lie down the eye on the pillow side will cry a ton)

Tinnitus is actually also a well known co morbid to ASD .

And i also have MILD (not always and when it comes very subtle ) Tinnitus

A little tipp. You need to keep you're head higher (since i had this inflammations all the time when little i cant even lay down to low with my head anymore i always need to have a steep angle for my head due to it. needles to say also lay on youre back so you dont put pressure on youre ear.

 

[Neko]

I’m sorry to hear you went through such a tough time with this.

I have a similar situation to what you describe with not being able to drive etc. Thankfully I have other options like being able to call a nurse and take a bus to the hospital.

I hope you can find a way to address your health concerns before they get too bad, because it is so challenging.

all the best to you.

 

[unperson]

I had a dentist who convinced me he could do small fillings without me needing anaesthetic, I don't know why but I went with him and yeh, it's fine for stuff that's not near the nerve, I'd rather shed a few tears and have it all over with in half an hour than the creepy after effects of anaesthetics.

 

[Magna]

One of the criteria's for getting ASD diagnose is actually higher pain threshold (ie heat ,cold , pain etc.... )

I don't know that a high pain threshold is an actual criteria for diagnosis. I don't see that listed when I look at the DSM V or ICD 10. I've read that a high pain threshold can be (isn't always) a characteristic of autism, but I don't think it's a diagnostic criteria.

@PastelPetals Did your ear ringing go away?

 

[PastelPetals]

I don't know that a high pain threshold is an actual criteria for diagnosis. I don't see that listed when I look at the DSM V or ICD 10. I've read that a high pain threshold can be (isn't always) a characteristic of autism, but I don't think it's a diagnostic criteria.

@PastelPetals Did your ear ringing go away?

It's almost all gone!! (yay!)

 

[Sarah S]

I don't know that a high pain threshold is an actual criteria for diagnosis. I don't see that listed when I look at the DSM V or ICD 10. I've read that a high pain threshold can be (isn't always) a characteristic of autism, but I don't think it's a diagnostic criteria.

Correct its one of the stipulated criteria's (you don't have to have all of them never said that or utliest didn't mean to imply it )

You need to have a specific nr of criteria's in all 3 areas of social communication & interaction + minimum 2 of the 4 types of the restricted repetitive behavior (what im referring to is in nr B 4)

And im referring to DSM V

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).

A Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1) Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2 ) Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3) Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

B Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1 ) Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2 ) Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

3 ) Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4 ) Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior.

C) Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D) Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E) These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:

With or without accompanying intellectual impairment With or without accompanying language impairment

Associated with a known medical or genetic condition or environmental factor

(Coding note: Use additional code to identify the associated medical or genetic condition.)

Associated with another neurodevelopmental, mental, or behavioral disorder


References
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

Page last reviewed: June 29, 2020

Diagnostic Criteria | Autism Spectrum Disorder (ASD) | NCBDDD | CDC