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HeroOfHyrule
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09 Jan 2021, 9:08 pm

There are aspects of my autism that have improved over time, and aspects that have gotten worse or stayed the same. Physical/mental health issues definitely can make it hard to cope with my symptoms, and even sometimes make them worse, like when a medical issue consistently messes with me sensory wise. I don't know if my life span is lessened by having autism, but the other problems I have probably lessen it a lot. I would overall function a lot better if I didn't have other issues besides for autism.


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21 Jan 2021, 6:13 am

As a kid I feel like I was mildly autistic or had many autistic traits. When I grew older I got really good at masking and now would say I have pretty excellent social skills. But since getting chronically ill including chronic fatigue and pain I can't mask at all and find myself frequently dealing with issues I though I left in childhood so in that sense I think its possible for it to look like ASD gets worse with commorbities just from the perspective of when I have so much else going on appearing neurotypical is the least of my worries. I have also had shut down type episodes including selective mutism, motor issues, and sensory overload when depressed but never before I became depressed. (Well, maybe once but that was after a traumatic incident)



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21 Jan 2021, 6:51 am

Knowing that you have autism definitely helps with working out how to best look after yourself, and informs more constructive debate with healthcare providers, employers, partners, friends and family.

I battled for years with alleged anxiety and depression which normal meds, CBT etc. didn't touch. I think I'd probably be in a much healthier, happier place now if I'd known a lot earlier what the root cause was, though of course there's no way of telling for sure.

I also have Type 1 Diabetes and there's definitely some interaction between the two conditions, especially regarding fatigue, sleep issues and mood swings.

The long term prognosis for T1D makes any potential consequences of the autism seem quite trivial, so I've never really worried about those lol



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21 Jan 2021, 9:03 am

Thank you all who have contributed to this thread...(Thumbs-up) :wink:



Tawaki
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23 Jan 2021, 1:39 pm

NT married to an Aspie.

Where it can shorten your life, is adulting can be really hard on the spectrum. Especially medical issues. My husband doesn't seem to notice really fawked up stuff happening to his body. The septic knee that swollen up to the size of his head. Infected molar that caused his jaw bone to swell. Bacterial lung infections.

If it wasn't for me going WTF, he would have happily wandered around until it was really FUBAR. Told the doctor his messed up knee only hurt "a little". The doctor told him he's was shocked he wasn't dead from a raging blood infection. Many times the doctors thought he was a substance abuser, because no undrugged person would tolerate the pain and aggravation.

My husband gets "stuck" on what to do next. Messed up knee? Hobble around until you can't bend it straight. Calling a doctor was no where on his radar screen. It wasn't a money or insurance issue. We had plenty of both. He isn't scared about seeing health care professionals. His crud executive functioning skills make it hard for him to do anything. And I hate being his mom, pestering to get obvious stuff checked out.

My husband is now 60, and it is harder for him cognitively do things. The brain isn't as elastic for multitasking, and dealing with life's daily nonsense as when in your 20s. He gets overwhelmed, and shuts down. Crowds, freeway traffic, large groups of people. He acts more like he's 80 sometimes. He needs way more alone time.

(he has already been screened for dementia twice. negative both times)



Jakki
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23 Jan 2021, 2:37 pm

Tawaki wrote:
NT married to an Aspie.

Where it can shorten your life, is adulting can be really hard on the spectrum. Especially medical issues. My husband doesn't seem to notice really fawked up stuff happening to his body. The septic knee that swollen up to the size of his head. Infected molar that caused his jaw bone to swell. Bacterial lung infections.

If it wasn't for me going WTF, he would have happily wandered around until it was really FUBAR. Told the doctor his messed up knee only hurt "a little". The doctor told him he's was shocked he wasn't dead from a raging blood infection. Many times the doctors thought he was a substance abuser, because no undrugged person would tolerate the pain and aggravation.

My husband gets "stuck" on what to do next. Messed up knee? Hobble around until you can't bend it straight. Calling a doctor was no where on his radar screen. It wasn't a money or insurance issue. We had plenty of both. He isn't scared about seeing health care professionals. His crud executive functioning skills make it hard for him to do anything. And I hate being his mom, pestering to get obvious stuff checked out.

My husband is now 60, and it is harder for him cognitively do things. The brain isn't as elastic for multitasking, and dealing with life's daily nonsense as when in your 20s. He gets overwhelmed, and shuts down. Crowds, freeway traffic, large groups of people. He acts more like he's 80 sometimes. He needs way more alone time.

(he has already been screened for dementia twice. negative both times)


Kudos to you for sticking with it . Have found myself occasionally ignoring physical problems for long periods of time
Broken finger or toes often have gone un noticed. By myself . For extended periods of time . It’s easier to ignore health issues often than dealing with medical personnel . Beside , being into hyper focusing on my particular
Interests can cause me to not deal with issues . My husband seemed to have Aspie traits .but he was a NT ,
Prolly just myself projecting my own issues . Most often , we were together , was happier times of our lives .


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theprisoner
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24 Jan 2021, 6:19 pm

It can get better or worse. It a full body disorder. gut brain axis, the vagus nerve. endocrine system. its all inseparable. be careful who and what you surround yourself with. a good environment will either build you up or tear you down.


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HeroOfHyrule
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24 Jan 2021, 6:43 pm

Tawaki wrote:
NT married to an Aspie.

Where it can shorten your life, is adulting can be really hard on the spectrum. Especially medical issues. My husband doesn't seem to notice really fawked up stuff happening to his body. The septic knee that swollen up to the size of his head. Infected molar that caused his jaw bone to swell. Bacterial lung infections.

If it wasn't for me going WTF, he would have happily wandered around until it was really FUBAR. Told the doctor his messed up knee only hurt "a little". The doctor told him he's was shocked he wasn't dead from a raging blood infection. Many times the doctors thought he was a substance abuser, because no undrugged person would tolerate the pain and aggravation.

My husband gets "stuck" on what to do next. Messed up knee? Hobble around until you can't bend it straight. Calling a doctor was no where on his radar screen. It wasn't a money or insurance issue. We had plenty of both. He isn't scared about seeing health care professionals. His crud executive functioning skills make it hard for him to do anything. And I hate being his mom, pestering to get obvious stuff checked out.

My husband is now 60, and it is harder for him cognitively do things. The brain isn't as elastic for multitasking, and dealing with life's daily nonsense as when in your 20s. He gets overwhelmed, and shuts down. Crowds, freeway traffic, large groups of people. He acts more like he's 80 sometimes. He needs way more alone time.

(he has already been screened for dementia twice. negative both times)

Recognizing medical issues is probably the most worrying part of autism for some people, and especially for their family members/friends. I have that issue, but I just straight up don't notice a lot of the time that there's a problem until it's bad enough or someone points it out to me. It freaks out the people close to me and often makes them question my ability to be independent.

I'm sorry to hear that you and your husband have to deal with this issue as it's very stressful for everyone involved.


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Jakki
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24 Jan 2021, 7:17 pm

This is a dilemma most disabled people face , especially if they have autism as a , co- morbidity as a issue . :roll:


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IsabellaLinton
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24 Jan 2021, 8:17 pm

I haven't read this whole thread, but I have a few thoughts.

Depending on what the related medical conditions are, I think the person's autistic characteristics could intensify over time. For example, think of the key characteristics of autism. One characteristic is that autistic people have difficulty in social situations and reading nonverbal cues. If the person develops another condition such as trauma, agoraphobia, etc., it stands to reason they will likely experience even more of a challenge in social situations. They may be so anxious that they have no energy left to mask or mirror, or even look at the other people for nonverbal cues. That doesn't necessarily mean their autism "got worse", but it does mean that they will require more support than previously, for social situations. The need for support is a defining characteristic of autism diagnoses.

There are many medical conditions which can be considered related. Not all of them are psychological (anxiety, depression, etc). Some are related to self-care. Many autistic people need support or assistance for regular self-care and independent living, like bathing, shopping for food, or preparing meals. Arranging doctor's appointments and taking care of oneself medically is also a challenge for some people on the spectrum. If a person fails to take care of themselves physically, or is unable to eat regular healthy meals, they can become ill. In my opinion those new conditions or illnesses are the result of their autism. Of course it isn't a physiological manifestation or disease progression, but rather cause and effect. These secondary illnesses from poor hygiene, poor healthcare practices, or difficulty with diet and exercise, can all affect a person's wellbeing holistically. Neglect or misunderstanding of a person's healthcare needs can lead to early death (e.g., heart attacks from not eating well), or even to suicide in the case of emotional and financial despair.

Statistics show that autistic people do have shorter than normal life expectancy, whether because of suicide or the cumulative effects of stress and other conditions. Lack of access to services is a main contributor, as many autistics don't work fulltime or have the income required for ongoing physical and mental health care.

This isn't to say that all autistics will experience a worsening of their symptoms with age, or that all of us will die younger than our peers, but it's something to consider.



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24 Jan 2021, 8:51 pm

You make some extremely salient points in the immediate previous posting. These situations can be. Extremely
Confusing , even for the highest functioning ASD person . I could imagine .


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IsabellaLinton
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24 Jan 2021, 9:33 pm

I suffered a stroke in my 40's. I lost my driving licence for four years, required the use of a walker for almost two years, and had to use wheelchair accessible transit or Uber. I guess a stroke isn't considered a "related medical condition" but it certainly could be attributed to stress, anxiety, or trauma. In my case I can attest that yes, it did make my autism feel more pronounced. I have always preferred to be alone and have privacy, rather than be in groups. I've always needed lots of time to decompress after social situations. I've always felt awkward in public. Imagine then adding a walker into my life. Just putting the bins out once a week was terrifying because I felt like everyone was staring at me. I was anxious about walking my dog or leaving the house at all.

Going in a wheelchair bus was overwhelming for me because of the interaction with so many strangers. I was very uncomfortable emotionally because I felt so badly for the people with serious physical disabilities, but it was also hard for me just making small talk and eye contact and dealing with sensory overload. I felt profoundly "autistic" during and after any of these outings. Sometimes I felt like I was never going to recover emotionally. I just wanted to be alone but I was required to go to stroke rehab three times a week for a year. I had to step out of my comfort zone. I had meltdowns in rehab, particularly with my OT, because she talked too much and was always touching me or invading my personal space.

I also developed diplopia (double vision), meaning that I couldn't read. Me -- not reading. For two years. I lost my special interest. It was awful.

Again, I'm not saying that my autism became worse clinically. Maybe it did. Who knows? But it certainly didn't get better. I was terrified, self-conscious, and overwhelmed the entire time. I felt like a spectacle with my walker (later a cane), and other visible differences. It was really hard just having so many doctors judge and interpret me: everyone from Neurologists to physiotherapists, to OT, to speech therapists, to vision therapists, psychiatry, and my GP.

Having this medical condition certainly wasn't easy for me with autism, because I'm timid at the best of times.



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24 Jan 2021, 9:57 pm

Am so sorry you had to go through those times , when I was in a walker , just. Negiotating the walker kinda
Absorbed all my attention. To get around focusing pretty much absorbed all my attention . Feeling like a show to be focused upon , was not noticed until could relax for for a moment .
But I truly feel for you ....... know those feelings .


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IsabellaLinton
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24 Jan 2021, 10:03 pm

Thanks, Jakki! You too!

I forgot to mention that autistic people commonly have difficulty with interoception, or interpreting pain signals. Sometimes autistic people can become very ill before they even know that something is wrong. This is another reason why autistic people are at risk of subsequent medical complications. Either we don't feel and investigate pain (hyposensitive), or we feel it too profoundly -- in which case doctors dismiss us as hypochondriacs (hypersensitive).

Both situations can lead to a poor outcome medically.



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24 Jan 2021, 10:31 pm

Omg that is sooo true ... but I like to think inspite of these issues pain wise , I get a lotta mileage out of a already
Previously damaged body ! Sounds silly in reality to not pay attention to pain of physical deficits, but am still pushing myself to keep going . Prolly not a very healthy thing to do. And wish my doctors and nurses had a greater sense of empathy for being burden with multiple infirmities . Thank you btw. Isabella ?


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