Late-Life Diagnoses

[grommet]

I'm new to the forum today. After a very long and difficult life (I'm 68 yo) I learned a few months back that I have autism. I've noticed that autists are typically in their 20's or early 30's when they receive a 'late-in-life' diagnosis. I've not yet seen posts from others as old as I am, and wonder how rare it is to learn so late in life.

I can't begin to tell you how relieved I was to discover the root of my lifelong alienation from the rest of the human race. "What's wrong with me?" "How can I hide it?" "How can I fix it?" All these began to take on a different hue: Autism is what's 'wrong' with me, it can't be fixed, you'll never be more than slightly successful in hiding it.

These are the things I'm dealing with as I reevaluate my entire life... for instance, I always have blamed my weirdness on my mother for not protecting me from my older brother who harassed me constantly. Now I can see myself as the little kid in the middle of the carpet who screams and cries whenever anybody disturbs me. Reevaluating an entire lifetime later has been almost as exhausting as trying to keep a levelheaded conversation going with an emotion-laden NT.

That's where I'm at, and wonder if others with a truly late-life diagnosis can lend me some perspective as I deal with this.

I found out I was autistic when I was diagnosed at age 38. I am 53 now. It explained my whole life, suddenly everything I did made sense. I gave myself more permission to be the way I was. That is what I got from my diagnosis, finding out I did the things I did, for a reason, I hadn't done anything wrong.

I was in long term relationship with another aspie and we both accepted the autistic things the other did. It was the first time I saw that kind of freedom, for autistic people to be themselves naturally and not judged for it. I do not know what else to say, I hope you feel better now that you understand yourself better.

 

[Wolfgangus Faldestolius]

I read a story about a child that was diagnosed with autism with 18 months and with 4 years didn't show any autistic traits anymore. This child was completely cured of autism or maybe misdiagnosed.

It sounds like adaptations adopted caused the obvious symptoms to reduce. Life is always going to be challenging and we always grow to meet it. It may be of benefit to this person to retain that self-insight for future reference and to piggy back on. Sub "clinical" is big territory.

 

[Crossbreed]

I read a story about a child that was diagnosed with autism with 18 months and with 4 years didn't show any autistic traits anymore. This child was completely cured of autism or maybe misdiagnosed.

ASD2 & 3 are easy to spot by doctors. Many of them miss ASD1 (unless they are specialists).

We are quirky, but have no cognitive deficit.

 

[autisticelders]

I'm new to the forum today. After a very long and difficult life (I'm 68 yo) I learned a few months back that I have autism. I've noticed that autists are typically in their 20's or early 30's when they receive a 'late-in-life' diagnosis. I've not yet seen posts from others as old as I am, and wonder how rare it is to learn so late in life.

I can't begin to tell you how relieved I was to discover the root of my lifelong alienation from the rest of the human race. "What's wrong with me?" "How can I hide it?" "How can I fix it?" All these began to take on a different hue: Autism is what's 'wrong' with me, it can't be fixed, you'll never be more than slightly successful in hiding it.

These are the things I'm dealing with as I reevaluate my entire life... for instance, I always have blamed my weirdness on my mother for not protecting me from my older brother who harassed me constantly. Now I can see myself as the little kid in the middle of the carpet who screams and cries whenever anybody disturbs me. Reevaluating an entire lifetime later has been almost as exhausting as trying to keep a levelheaded conversation going with an emotion-laden NT.

That's where I'm at, and wonder if others with a truly late-life diagnosis can lend me some perspective as I deal with this.

I identify with this completely, I self diagnosed at around 66 years old, got formal diagnosis at 3 days before my 68th birthday. Knowing my diagnosis came as such a relief. I have much better self understanding as I learn more about autism and understand how it has affected me all my life. I have plenty of "aha" moments when I suddenly see how something that has caused so many struggles had autism at its root. I think it is really important to self understanding and healing of all the pains and Whys of our life "before" to find out we are autistic. It has changed my life to find my diagnosis is autism. what a relief!

 

[SDRSpark]

@Dadamen: It would be interesting to see what interventions were needed in order to minimize or eliminate the symptoms. "IF" the working definition of "autism" is strictly based upon signs and symptoms,...then one may,...may,...be "cured" of autism. I am giving this a lot of speculation. Myself, and others, will look at the underlying causes and neuroanatomy,...and say,...no way on God's green Earth.

Early intervention has been shown to be the way to minimize symptoms, for sure. What you are doing is working with the developing brain and through certain therapies, take advantage of the neuroplasticity of a small child's brain. Basically, what the therapist is trying to do is create new neural pathways,...around the "bad ones". However,...I might be inclined to take such anecdotal reports with a "large grain of salt". Granted, there are at least 3 distinctly different autism brain types, as seen via neuroimaging studies, however all suggest that these anatomical changes begin with the earliest of brain formation, in utero. The thalamus, the central "relay center" is highly affected, generally with significant areas of hypoconduction. The thalamus develops well before the cortex and cerebellum,...so this is primitive, early brain structure. Neurons migrate outward from the thalamus from around 20 weeks gestation,...and those are often with altered migrational patterns, neuronal structural abnormalities, and in the cerebellum,...fewer Perkinje cells. So, to suggest that, somehow, one is able to "cure" or "eliminate" that component seems a bit unlikely. Medicine, often times, is much better at treating symptoms than actually curing.

It would be interesting to see, if possible, the stages of improvement in neurological functioning as seen via neuroimaging studies.

I find this fascinating.

I agree that it's really unlikely to change the brain structure (and I'm not sure you'd actually want to). The problem with autism, specifically, is that it's seen not to exist if it's not a problem. "Autistic behaviors" are exhibited by autistic people in distress. If you're not in distress, you're seen as "not autistic" (based on the idea that autism is a disorder instead of a condition of being).

What makes this really aggravating is, that if autism were recognized in people who aren't in distress at the time, that distress could be prevented. Treating the symptoms/comorbids doesn't do anything to address the reason why they exist in the first place. Recognizing the different brain structure means that we don't have to be in crisis before we are able to access what we actually need to thrive.

 

[Dadamen]

@Dadamen: It would be interesting to see what interventions were needed in order to minimize or eliminate the symptoms. "IF" the working definition of "autism" is strictly based upon signs and symptoms,...then one may,...may,...be "cured" of autism. I am giving this a lot of speculation. Myself, and others, will look at the underlying causes and neuroanatomy,...and say,...no way on God's green Earth.

Early intervention has been shown to be the way to minimize symptoms, for sure. What you are doing is working with the developing brain and through certain therapies, take advantage of the neuroplasticity of a small child's brain. Basically, what the therapist is trying to do is create new neural pathways,...around the "bad ones". However,...I might be inclined to take such anecdotal reports with a "large grain of salt". Granted, there are at least 3 distinctly different autism brain types, as seen via neuroimaging studies, however all suggest that these anatomical changes begin with the earliest of brain formation, in utero. The thalamus, the central "relay center" is highly affected, generally with significant areas of hypoconduction. The thalamus develops well before the cortex and cerebellum,...so this is primitive, early brain structure. Neurons migrate outward from the thalamus from around 20 weeks gestation,...and those are often with altered migrational patterns, neuronal structural abnormalities, and in the cerebellum,...fewer Perkinje cells. So, to suggest that, somehow, one is able to "cure" or "eliminate" that component seems a bit unlikely. Medicine, often times, is much better at treating symptoms than actually curing.

It would be interesting to see, if possible, the stages of improvement in neurological functioning as seen via neuroimaging studies.

Yes, I heard that autism can be sometimes seen in brain scans. I hope it will be diagnosed with brain scans in future. I read that autism can sometimes be seen at FDG-PET scan and I made a whole body PET when I had lymphoma and my brain was ok there.

 

[Dadamen]

ASD2 & 3 are easy to spot by doctors. Many of them miss ASD1 (unless they are specialists).

We are quirky, but have no cognitive deficit.

People with ASD 1 look normal at first sight so it's hard to notice. We cam normally communicate with people (such as doctor on check-up) and then he dosen't see repetitive behaviuors or trouble making and maintainig friedndships/relationships.

 

[Neonatal RRT]

@SDRSpark : There have been a few good lectures on the neuroimaging of autistic brains on YouTube the fast 2 years.

Historically, we have been diagnosed by a psychologist via interviews and cognitive performance testing. Having said that,...these are signs and symptoms. In the medical model,...which I am suggesting here,...signs and symptoms only appear if there is an underlying problem. I treat patients with heart and lung problems,...it's what I do. If the oxygen level drops in the blood and the patient becomes short of breath,...those are signs and symptoms. My job is to treat those. Now a surgeon may be able to correct some anatomical problems with a heart,...but not everything,...as the patient may still have to electrophysiological abnormalities which cannot be fixed. We give insulin to folks with some types of diabetes. We give oxygen to some folks with lung disease. Signs and symptoms may go away,...as long as they are being treated,...but we are not curing anything. So, it is with the autistic brain,...there are structural differences, microanatomical differences, neurotransmitter differences, genetic differences, and so on. We can, treat and minimize signs and symptoms,...sometimes to the point where it appears that it "goes away",...but we haven't done anything at all to fix the underlying problem.

 

[SDRSpark]

@SDRSpark : There have been a few good lectures on the neuroimaging of autistic brains on YouTube the fast 2 years.

Historically, we have been diagnosed by a psychologist via interviews and cognitive performance testing. Having said that,...these are signs and symptoms. In the medical model,...which I am suggesting here,...signs and symptoms only appear if there is an underlying problem. I treat patients with heart and lung problems,...it's what I do. If the oxygen level drops in the blood and the patient becomes short of breath,...those are signs and symptoms. My job is to treat those. Now a surgeon may be able to correct some anatomical problems with a heart,...but not everything,...as the patient may still have to electrophysiological abnormalities which cannot be fixed. We give insulin to folks with some types of diabetes. We give oxygen to some folks with lung disease. Signs and symptoms may go away,...as long as they are being treated,...but we are not curing anything. So, it is with the autistic brain,...there are structural differences, microanatomical differences, neurotransmitter differences, genetic differences, and so on. We can, treat and minimize signs and symptoms,...sometimes to the point where it appears that it "goes away",...but we haven't done anything at all to fix the underlying problem.

Most of your patients don't show up without the idea that something is wrong though...I mean sure, there are preventative diagnostic tests which catch things before they're symptomatic, but for the most part, people show up because they have a problem.

It's the same with autism. Most of the time, the differences or struggles are noted. I'm not really suggesting preventative screening...but so many people seek assessment because they know that something is "wrong"...but they're turned away because they're "too high functioning". The problem with that is, they do have signs, but they're seen as not distressed enough to warrant treatment. These people often wind up in crisis later, and only then is it considered worth understanding.

 

[Dadamen]

@Neonatal RRT Are you a doctor?

 

[Neonatal RRT]

@SDRSpark : Agree. It would appear that despite the latest advances in neuroimaging and research within the autistic realm,...most folks get to see the psychologist,...a person trained in identifying signs and symptoms. The problem with this is that some aspects of this process is a bit subjective,...not objective,...and is, as you mentioned, the underlying problems of what you are describing. Depending upon who we see professionally and what kinds of communication we have with them,...things can get lost in translation. The vast majority of us, at least in the year 2020/2021, are not lucky enough to be referred to UCLA, Cleveland Clinic, Cambridge University, etc. and probably will not run into the right people,...and MRI imaging capabilities,...to actually look at the brain in any kind of appropriate detail.

 

[Neonatal RRT]

@Dadamen: I am a licensed Registered Respiratory Therapist (RRT). That, in and of itself, doesn't really give a good description of my training or what I do though. Respiratory therapists, like nurses, can have a wide range of training and work in a wide range of medical environments,...and have a wide range of responsibilities. Personally, I work at one of the largest children's hospitals in the midwest,...US. Professionally, I am not allowed to divulge my name or my corporate affiliation on social media. At any rate, my specialty is neonatal medicine, emphasis in the developing respiratory, cardiac, and neurological control of the premature infant,...it also involves study of the intrauterine environment, the transitional physiology that occurs when the premature infant is exposed to the extrauterine world,...and this involves some 30+ years of advanced and continuing study in this realm. I do work at the bedside and am a resource person for all the neonatologists, pulmonologist, anesthesiologists, cardiologists, surgeons, and other medical staff that follow patients in the neonatal unit. Much of what I do involves, in one form or another, respiratory support of the extremely premature infant. I go to the delivery rooms. I do ground and air transport, picking up babies from outlying hospitals. I have taken advanced board exams. I am published. I have lectured at medical conferences. I am an instructor at a local university. I could go on and on, but a synopsis of what I do.

 

[Magna]

I find this fascinating.

I agree that it's really unlikely to change the brain structure (and I'm not sure you'd actually want to). The problem with autism, specifically, is that it's seen not to exist if it's not a problem. "Autistic behaviors" are exhibited by autistic people in distress. If you're not in distress, you're seen as "not autistic" (based on the idea that autism is a disorder instead of a condition of being).

What makes this really aggravating is, that if autism were recognized in people who aren't in distress at the time, that distress could be prevented. Treating the symptoms/comorbids doesn't do anything to address the reason why they exist in the first place. Recognizing the different brain structure means that we don't have to be in crisis before we are able to access what we actually need to thrive.

Temple Grandin has volunteered for a number of brain scans and she shows the images of the scans in some of her talks. There are areas of her brain that are unmistakably different than an NT brain.

 

[Dadamen]

@Dadamen: I am a licensed Registered Respiratory Therapist (RRT). That, in and of itself, doesn't really give a good description of my training or what I do though. Respiratory therapists, like nurses, can have a wide range of training and work in a wide range of medical environments,...and have a wide range of responsibilities. Personally, I work at one of the largest children's hospitals in the midwest,...US. Professionally, I am not allowed to divulge my name or my corporate affiliation on social media. At any rate, my specialty is neonatal medicine, emphasis in the developing respiratory, cardiac, and neurological control of the premature infant,...it also involves study of the intrauterine environment, the transitional physiology that occurs when the premature infant is exposed to the extrauterine world,...and this involves some 30+ years of advanced and continuing study in this realm. I do work at the bedside and am a resource person for all the neonatologists, pulmonologist, anesthesiologists, cardiologists, surgeons, and other medical staff that follow patients in the neonatal unit. Much of what I do involves, in one form or another, respiratory support of the extremely premature infant. I go to the delivery rooms. I do ground and air transport, picking up babies from outlying hospitals. I have taken advanced board exams. I am published. I have lectured at medical conferences. I am an instructor at a local university. I could go on and on, but a synopsis of what I do.

In Croatia we don't have such a thing that is called respitatory therapist. We have neonatalogists and also pulmologists that treat respiratory issues, Great to meet someone who is a doctor on spectrum because I also want to become a doctor (finishing high school in summer 2022 and then I can go to university of medicine) it gives me belief that I can also be a succesful doctor. And you are the second doctor on spectrum I met here.

 

[Neonatal RRT]

@Dadamen : When I was first learning about my Asperger's, I remember watching Dr. Tony Attwood's lecture on YouTube, "It might be Asperger's". I was surprised, at the time, to learn that the #1 profession for those on the spectrum,...healthcare. I always thought it was engineering, physics, mathematics, etc....but no,...healthcare. Since that time, I've been able to identify several physicians that appear to have many autistic traits. Not surprisingly, these are specialists in their respective fields,...neurosurgeon, ophthalmologist, cardiac surgeon,...just to name a few. These are not the "friendly" pediatrician or family medicine folks,...no,...these are as one would expect,...the quiet genius types.

 

[Mike_T]

I'm with you my friend. Diagnosed a few months ago at age 52. My life is in shambles.

 

[Neonatal RRT]

@Mike_T "...Diagnosed a few months ago at age 52. My life is in shambles." Is your life in shambles for other reasons, or because of the ASD diagnosis?

 

[sport]

I'm new to the forum today. After a very long and difficult life (I'm 68 yo) I learned a few months back that I have autism. I've noticed that autists are typically in their 20's or early 30's when they receive a 'late-in-life' diagnosis. I've not yet seen posts from others as old as I am, and wonder how rare it is to learn so late in life.

I can't begin to tell you how relieved I was to discover the root of my lifelong alienation from the rest of the human race. "What's wrong with me?" "How can I hide it?" "How can I fix it?" All these began to take on a different hue: Autism is what's 'wrong' with me, it can't be fixed, you'll never be more than slightly successful in hiding it.

These are the things I'm dealing with as I reevaluate my entire life... for instance, I always have blamed my weirdness on my mother for not protecting me from my older brother who harassed me constantly. Now I can see myself as the little kid in the middle of the carpet who screams and cries whenever anybody disturbs me. Reevaluating an entire lifetime later has been almost as exhausting as trying to keep a levelheaded conversation going with an emotion-laden NT.

That's where I'm at, and wonder if others with a truly late-life diagnosis can lend me some perspective as I deal with this.

I can somewhat relate to your problems growing up during the 40's autism was somewhat unknown .I learned to mask as my dad straight lined no such thing as failure but could relate to my mom.I learned after testing many yrs later as having autism+dd which is not a bargain.

 

[sotto voce]

Hey, I have to chime in here too, since I just turned 68 in December 2020. I am pushing ahead with self-diagnosis because it makes the most sense in analyzing my stumbling and lurching through life. I look forward to hearing more about your self-discovery on this forum...

 

[Vince]

I self-diagnosed just a couple years ago at 55. I've had reasonable success at figuring out how to adapt over the decades so I'm fairly adept at it now, though most anybody would still describe me as pretty odd. I do various stimming things but almost always when I know it isn't noticed. A secret camera in my house would reveal the obviousness of autism traits, but when seen (when I can't avoid) being in public, it's much less apparent and often not noticed.

I didn't bother getting a formal diagnosis because I'm getting by OK and I don't think it would make any difference at this time. But a counselor I saw for a while is who noticed it and walked me through it. She was helpful.

There are two main things I feel about finally knowing what's going on in my head.
The bad part is that at this late age, I feel gypped out of a lot of things I could have got out of life had I known better and not instead just felt so disconnected and odd. Many things have been a very tough struggle and I've embarrassed myself many hundreds of times and I suspect that number would be tons lower had I been wiser. In short, it would have helped a lot if I had figured this out about 20 or 30 years sooner.
Just a short aside, my first memory of any autistic "symptom" was in about 5th grade and I would start some kind of "tick", like constant hard blinking or making constant voicings, etc. I just remember they would show up suddenly and I didn't like it but could... not... stop. Well I eventually did stop, but it was a colossal effort that went on for weeks or months. I just had to figure out how on my own because nobody was any help. I can't blame them, they didn't know any better than I did. Anyways, it just got chalked up to nerves. But all the other kids were in the same circumstances I was and they didn't have to deal with stuff like this. In the end, I guess trials like that helped to make me stronger and I think had I been diagnosed back then (not a thing in those days) I suspect that I would have lazily blamed it on "the autism" and not worked my way through it, resulting in an even more difficult life. So you gotta take the good with the bad.

The good news is now that I know what the heck is going on, a huge feeling of relief permeates my days now. I no longer feel so damned guilty or stupid or just plain strange or whatever term comes to mind. I turned out very independent and somewhat strong-minded and my varying interests have helped me pick up a ton of useful and interesting (to me) skills over the years. Plus now that I'm old, I can just play the curmudgeonly "get off my lawn!" guy and nobody so much as bats an eyelash. It's a mask that wasn't available when I was young but now it works for me.