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Late-Life Diagnoses

T

The Pandector

Well-Known Member
V.I.P Member
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.
 
It's hard. It takes an existential shift and re-evaluating many, many memories, hurts, blames, etc.

Many on here have done it. There is a curve, but it settles.

Welcome to your tribe. We are glad you're here and found your way through all the thickets.
 
Welcome!

To answer the question, not that many. As you are likely aware, with ASD1 and ASD2 not being well recognized into the 1990s/2000s, there's a lot of awareness missing, even in the medical community.

Combine that with the fact that most that work with the spectrum focus on children, and therefore there are much fewer resources available in terms of obtaining a diagnosis, and that those getting close to or already in retirement likely would derive little/no benefit from a diagnosis.*

*In my opinion, those who would be classified as ASD2 would likely still benefit from a diagnosis if that might mean more supports, such as funding for assisted living.

In my work, I have had several clients in their 50s or 60s whom in my opinion were on the spectrum.
 
Hi and welcome. I realised this about myself in my 50s after coming across Aspergers in the course of my work. Exactly as you say, finally I had an explanation for how my life had been. My experience is that it then takes time to gradually fully notice the areas where this is relevant, and recast my life experiences as I find out more.

This is a good place to be to find out more and spend time with others similarly affected. There are some here who were diagnosed late in life and some who came across autism and self diagnosed. I haven't pursued a diagnosis and am not sure if I would get one, there seems to be some reluctance to diagnose females or people who have gone under the wire lifelong.

However, my experience was that after a lifetime of work on myself and gaining some knowledge of relevant areas as a therapist, I was able to recognise that the unchanging core of my experience was autism once I came across it, initially through my work and through reading research and accounts by people with Aspergers of their experiences.

I hope that you enjoy it here and find it useful and supportive.

:turtle::deciduous::seedling::bug::leafwind::herb::sunflower::blossom:
 
I was 42 and it was only just semi-official but seems to have caught on amongst those I deal with (who are few anyway). Assistance is patchy and a matter of serendipity.
 
I was in late fifties when I was diagnosed.
It did help to understand why my life had been so different and difficult.
I just wish I had known sooner so I might have sought help for facing the end of my life
as I had always known it.
I never left home, lived on my own or had a family. I was content this way and didn't see
the need to change it.
I worked and was allowed freedom to do as I wanted. But, I never bonded enough with anyone
besides my parents to want to live with them even though I had boyfriends and dated starting
at age 23.

When I found myself alone with no family left and a small SSD income, I didn't know where to turn.
I didn't make enough for assisted living or a group home and was not able to live alone either.
My grief counselor was the one that picked up on my Aspie ways and told me I should be evaluated.
I've never really adjusted this late in life to being with others and will always miss my Mom.
But, at least now I understand all of my life issues.
I ended up renting three rooms and kitchen use in a big house owned by an older man who
needed some extra help and my rent is affordable. He also gives me use of one of his cars.
We used to play tennis together.
 
@The Pandector : Welcome. I was diagnosed at the age of 52.

Yes, you are correct,...it was a relief to finally have some answers,...some explanation for why I was having certain difficulties, the social isolation, etc.

Then, a bit later, discovering all of these sensory issues that I have been shoving into the background, simply dealing with, that I just thought was normal,...but was not. I learned that I sensed and navigated my world quite differently from others. I had some sense that I thought differently from others,...but didn't know why. I learned about this thing called "masking",...the mentally exhausting task of trying to fit in and act normal. I learned, and am still learning, about all the biochemistry, the genetics, the neuroanatomy, the developing brain, the contributing factors, how to manage symptoms,...a long list of things that I never thought I would be studying.

I learned the general internet is full of misinformation. Do this, eat that, take this supplement,...and cure your autism! Wrong. There are physical changes in the neuroanatomy that begin early inside the womb, around 20 weeks gestation and continue throughout childhood brain development,...you don't fix that with a pill. You can, however, learn how to better manage symptoms,...but no cure,...sorry.

Our parents did the best they could with what they thought were simply "behavior issues". My mother and a few of my siblings are still alive,...they don't know of my diagnosis. No point. I've had a lifetime of "moral diagnosis" and I rarely speak to my family anyway.

It is still amazing to me, especially within the medical field, how many people simply do not know what autism is or how to recognize it,...and I work at one of the largest children's hospitals in the US! I told some of my co-workers about my diagnosis,...the typical response,..."OK",...and that's it,...literally no response at all. In my mind, that means they know so little about it, that they literally do not know what to ask or how to respond. Of those people that I have divulged this information to, I can count the people on one hand that actually had some real experience and knowledge of autism and Asperger's.
 
The Pandector said:
... 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.
Click to expand...

For me the biggest & best stepping stone was picking up on early childhood gifts & likes - thirst for knowledge (despite handing in substantial written work not coming easy), simple aesthetic tastes.

I have eschewed the shame I had felt at dropping some good things & lagging behind. I am understanding towards myself for that and am thrilled at rejoining my destiny.
 
Hi and welcome to autism forums. It is good to understand your life better even if you are in 60s. I can imagine how it was to you as a teenager when there when no computers and internet and the main fun was hanging out and playing with friends. Nowadays many NT teens are more on computer than out. There are surely many people like you. For example my grandfather, born in 1930, died in 1990 has many aspie caracteristics, according to my father's stories about him.
 
Thank you all for your responses. It seems that I'm taking it about normally. A lifetime of wondering why this and that, but mostly wanting to know so that I could fix things. (That squealing and grinding sound is me trying to change gears.)

I've tried to tell a few of those closest to me. Friends tend to give leeway, but family definitely not climbing onboard. I need to abandon that effort and, as Wolfgangus says, just work on who I am.

Thanks for the welcome.
 
Crossbreed said:
I believe that if an ASD2 or 3 is "cured of" their autism, they will be ASD1.
Click to expand...
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.
 
@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.:D

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.
 
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Welcome. Diagnosed at 48. It was the missing piece of the puzzle for me that was mysteriously elusive prior to that. It was a wonderful thing for me to find out about myself.
 
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