Article about our undiagnosed and misdiagnosed generation

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Left to languish in psychiatric institutions or drugged for disorders they never had, many older adults with autism were neglected or forgotten for decades. Efforts to help them are finally underway.

good article, thanks for sharing.

This is a promising development. At least someone is searching. However, the search isn’t wide enough. They need to be looking at homeless people, those on disability, those who have not left their parent’s home or are dependents on another relative or family friends, and those who live in abusive relationships in which they are dependent on the abuser.

In my case, the fact that I have been dependent on one of my sisters for 25+ years would be a red flag. I’ve never really lived independently. Granted, I've mostly been employed (if underemployed) and have always saved and managed money reasonably well (I hate the idea of being in debt or financially dependent) but social function and planning (executive function) not so much. She has handled most phone calls, set up any social engagements, interacted with apartment managers and the like, ordered for me in restaurants, and driven me to appointments. For many years, I would not even go shopping without her, and struggled to even take walks outside on my own (unless I could quickly get to an unpopulated open area). She planned our camping trips and put together our gear - with me carrying and moving things to the car, but only under her direction. It is humiliating to admit this, but planning and execution of plans is a great weakness of mine that I have never really been able to fix.

Have I tried to learn to do these things? Yes, repeatedly. I have learned to go to the store by myself, although I still prefer to go with someone else and still find it difficult to get moving when I have to go alone. I have made medical appointments on my own, but this is still difficult and as a result I have an average time between visits of 10 years or so. I have learned to make eye contact and respond to people when they greet me on the street or make attempts to be pleasant (small talk) but I still have to push myself *not* to cross the street and/or avert my gaze when I see people on the sidewalk ahead of me. I can order for myself in restaurants, but have to spend several minutes examining the menu and then reciting the chosen items so I don't 'choke' and forget them when it's time to order. I'm still hopeless at planning even the simplest activities, and am not good at controlling my attention (mind wanders a lot even when I try to focus, unless it is a special interest-related thing, in which case I focus far too well). I don't have good judgement when it comes to people - I have been 'rescued' by her many times, from people who didn't mean well, when I detected nothing or misread their intentions.

If I had not had my sister's support, it is very likely that I would be in an abusive relationship, or a homeless shelter or dead by now. I would definitely look in homeless shelters or among transient street populations for the less fortunate autistics who didn't have this kind of support, or who lost it through abandonment, death, or estrangement.

I'd add "in prison" to the list of places to look.

Varelse, your sister is a saint, and you are mighty long-suffering too. I am convinced you have done the best you can. Give yourself a pat on the back.

Yes, yes, and thank you

I will never give up, because I owe too many people for their kindness, understanding, unsolicited help and praise, and many other forms of support of which I may never know the full extent.

One of my sociology mentors is a man in his late 60s who is partially verbal and what I would classify as a street expert on sociology. He had a stroke a year or so ago and is now in an assisted living facility. He didn't have direct conversations too often. I once had to directly ask him about being classified as autistic and his reaction was not something I expected. He seemed deeply embarrassed and discredited by being known to be autistic. I don't think he can believe that there are other people like him, even though I've tried to tell him there are.

I understand that things like driving a car, living alone without help, and being confident in your social actions are important, especially to people who have reached an age where they should be respected. But at least in the case of my mentor, those seem like minor things to me. He taught me so much about critical thinking- more than I've learned in any class or book. He's an important person. Everyone in our neighborhood likes and respects him. I don't think he sees himself in the way that others see him, which is as a prestigious and highly knowledgeable local figure.

The Boomer generation needs to become more educated about autism, and learn that being different isn't bad. And the people who know older autistic people need to be more clear about how they see them. We don't tell each other enough how we value one another.

I know an elderly gentleman (over 80) who I am sure is autistic, but I don't know whether to tell him. I don't see him very often, so I wouldn't be able to monitor the reaction; and I am not sure he would welcome the news (assuming he even believed it), but rather, might feel embarrassed, like your mentor.

I have found the best way to let someone know is to talk about autism around them in a positive way and then see if they continue the conversation. It's pretty frustrating because I often feel that people's lives would be easier if they knew.

My mentor's sister told me that he was autistic, so I assumed that he self-identified that way. That didn't seem to be the case.

My own reaction to even suspecting that I might have autism was a series of meltdowns, which affected my health, worsened my IBD, and sent me to a psychologist for assessment (sadly, this encounter made things even worse).

Ironic, when you think about it, but if you've gotten used to one way of seeing yourself and explaining your world over a fifty to eighty year span of time, it is a nasty, sickening shock to have to completely rethink that narrative from scratch. And, of course, people with ASD tend to have compromised ability to cope with change.

Absolutely! I was trying to study this phenomenon a few years ago. In social psychology (a form of sociology) it was referred to as having an "alternation of self." There's very little written about this. I would assume because people are using various different terms these days.

An alternation of self is when a person undergoes some kind of personal transformation, so that they are almost entirely a different person. The core "self" remains, but the rest of the person is different. The easiest way to think about this is if a person has been an alcoholic and drug addict, thoughtless to other people, abused the people around them, and then that person found religion. Everyone who knew the person before and after would remark that the religion saved him, and you wouldn't recognize him as the person he used to be.

But if you find out that you are something that you always were and didn't know it- this can also cause an alternation of self. Like finding out that you are gay, or that you are biologically a different race than you had thought you were, finding out that you're on the autism spectrum rewrites your personal history, your present life, and your future. Instead of whatever you thought you were, you are now a person on the autism spectrum- neurologically and socially different.

I am still in this process, and still experiencing powerful emotions and physical reactions. Crying, moaning, shaking, and fighting a powerful urge to self-harm several times a week. Thankfully it is no longer several times a day, and I am sleeping more normally (my normal, that is). I don't like to talk about these things, even here, because it seems too much like drama and attention-seeking, but that is reality right now for me.

Varelse, your post could have been something I would have posted, almost word for word, because this was exactly my own reaction to "even suspecting," several years ago.

I was sickened to my stomach because of that same sudden and very jarring re-writing and re-framing I suddenly had to do to my whole inner sense of myself. And for exactly the same reasons you state, because I had just spent 45 years thinking my weirdness was just something I would have worked hard enough to banish one day. When it hit me that all of that might be wrong, it was a really, really nasty shock. So bad that I went into denial as if what I suspected of myself was a terrible, shameful thing. It took me years to even start facing up to researching further and finally pursuing evaluation. It was a horrible little thing in a dungeon for a long time, for me, even though it explained everything.

This is why I find it so maddening when once in a while someone accuses newly diagnosed older people of "just wanting to jump on a bandwagon" or worse, find an excuse for something. Because I know for me it was far from a case of "ooh look, this is what I want to be!" Instead even the initial suspicion traumatized me. It was very far from something I wanted to identify with, having spent all my life working hard to overcome what I was suddenly learning was something with a name.

It can be very jarring for an older person to either realize by themselves or be told by someone else that they may not have known all their lives that they are on the autism spectrum. Particularly since older generations are also the ones that knew autism only as something awful (that used to be the perception).

I would be very wary of trying to "tell" anyone of my own age or older that they might be autistic. It was a shock to me and I don't think it's always the right thing to want to thrust that on anyone after a lifetime of living.

If the guy can still type and his cognition is still decent send him here. Plenty of us boomer autistics for him to commiserate with.

As far as ailienation of self a lot of times I am unsure if something is a skill that had been added or me faking it.

Thanks for sharing this, it is reassuring to know that I am not alone in this. As someone who is currently still in 'self-assessed' status, I am still working toward acceptance. Everyone who shares here is helping me and I am grateful.

Finding out you are autistic is like a second birthday. Some births are smooth, other births do involve plenty of pain until things straighten out. You true autistic self has been suppressed for decades so it is understandable that she is having a tough time coming out. Your autistic brain needs to process this and heal. Healing can painful enough that it does not feel like healing but it is still healing.

My advice is to let your autistic brain do what it needs to do to heal. I hope this acceptance process ends sooner rather then later.

I do not know if this helps but we can not blame ourselves because the knowledge was not there when we were growing up and a lot of our adult years. And that is as true of our parents also, they made mistakes that harmed us but it was based on the incorrect information they had. Unlike generations prior to us we are not going to leave the earth never knowing who we really are.

I think they need to start looking at most people who are on drugs today for anxiety or depression, I have a feeling quite a few have not been properly diagnosed.