Social communication challenges of aging autistics

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ASPartOfMe
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29 Apr 2019, 11:43 pm

New research reveals the social communication challenges of aging with autism

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What makes us who we are and how does that change as we get older?

It’s a question Arizona State University College of Health Solutions Assistant Professor B. Blair Braden has been asking since childhood, when she spent much of her time at the nursing home owned and operated by her family.

Later, her focus narrowed to how aging affects individuals with autism after spending time with students in her sister’s special education class.

And just this month, Braden published a series of related studies in the scholarly journal Research in Autism Spectrum Disorders — two of which will be featured in the journal’s special issue on aging with autism — that probe the specific question of how social and verbal fluency change as individuals with autism age.

Braden and her team found that older adults with autism report more social communication difficulties than younger adults with autism, however verbal fluency does not appear to become more difficult with age. Using brain scans, they were also able to deduce that areas of the brain related to social communication, cognition and executive functions thinned more quickly with age in adults with autism than those without.

“People with autism have a lot of these cognitive struggles and brain communication patterns that look more like what we know happens with aging,” Braden said. “So that really informed our hypothesis and, in this case, on a brain level, it panned out … and it correlated with their social communication difficulties. So we really feel like we have preliminary evidence for what the brain change is that is explaining the difficulties.”

Robert Behr, a participant in Braden’s studies who was diagnosed with high-functioning autism in his mid-50s, has a master’s degree in computer science and a career as a software engineer. Despite his successes, he still sometimes struggles with the social aspect of communication, which he says has led to many a misunderstanding with girlfriends.

Fellow study participant Susan Golubock, also diagnosed with high-functioning autism later in life, has had somewhat less trouble in that area, thanks in part, she believes, to none other than Shirley Temple. As a child, Golubock learned to model her tone of voice and facial expressions after the saccharine child actor, which helped her master those nonverbal communication cues crucial to positive social interactions.

“I felt these were things that people expected of me and I didn't know how to do them, so I taught myself,” she said.

Even so, Golubock still finds social situations overwhelming. When one researcher asked her what she learned about her friends on a recent lunch date, she had an epiphany.

“It was like, I had no clue that's why people did it (spent time interacting socially),” she said. “I was supposed to be learning something about them? With all that noise going on, and focusing on not aspirating and all the other things I had to focus on?”

That Golubock is successful at appearing outwardly adept in social situations while inwardly she feels stressed is evidence of a phenomenon known as camouflaging.

“Camouflaging is still a working definition,” Braden said. “It’s only something that's been talked about a lot in the last couple of years, but it’s the discrepancy between someone’s internal experience and their external output. … And that discrepancy is greater for women.”

Such nuances are good examples of why Braden is working diligently to ensure more women are involved in this kind of research.

Considering that Behr and Golubock, two adults with autism who are on the high-functioning end of the spectrum, still experience communication challenges underscores the importance of interventions for people on the lower-functioning end of the spectrum.

However, both caution that such interventions must be carefully thought out.

Behr believes having grown up “in the wild,” as he phrases it — meaning they weren’t diagnosed until later in life, and as such, didn’t receive therapy or behavioral intervention as children — puts them at an advantage over children today because, while he and Golubock had to think hard about social interaction and figure it out on their own, children today are simply following instructions on how to act without thinking or understanding why.

Braden is taking their concerns into consideration as she works to design new types of interventions that adapt tools used to teach social communication skills to teens and young adults with autism to make them feasible for people who are experiencing age-related decline in that area.

“I just think it’s important for everyone to know what to expect when they get older, especially if there’s reason to believe aging may affect you differently,” she said.


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ApricitiousRory
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01 May 2019, 2:51 pm

I really relate to what the article talks about with camouflaging. At 55 (56 in three days!) my sense of where I'm at is in the midst of an autistic burnout that's been building for 30+ years or more. My old strategies & scripts don't seem to work as well as they once did, and I'm so tired of masking/camouflaging. It doesn't help that my workplace is one of those "constantly changing" kind of organizations. I used to be able to keep up, but not so much any more.


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Benjamin the Donkey
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01 May 2019, 10:39 pm

ApricitiousRory wrote:
I really relate to what the article talks about with camouflaging. At 55 (56 in three days!) my sense of where I'm at is in the midst of an autistic burnout that's been building for 30+ years or more. My old strategies & scripts don't seem to work as well as they once did, and I'm so tired of masking/camouflaging. It doesn't help that my workplace is one of those "constantly changing" kind of organizations. I used to be able to keep up, but not so much any more.


I'm the same age with the same experience.


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03 May 2019, 12:14 am

I seem to be heading that way already. After spending most of my life gradually building up social skills, I feel like they're slipping away. It's frustrating.



traven
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03 May 2019, 2:37 am

aging prevents me from reading the quote blocks itfp

i don't care about that much anymore
i listened and listened, and found no one would do the same, eventually

communicating vessels, really?

you know/see/heard the group---talking, who's listening?
no one, just searching a hook to get back into the front of the word attack battle
yk, when the peeps you know let you drop like a hot patato in favor of a lying thieving path of discord ?
when the s**t hits the fan and you watch you being pushed away as the plague
yk, the lie of "mirroring" they try to put on you
bad things happen to you because you're bad- mantra
-----------------
now they try to keep afloat up in the air with helicopter virtuesignalling
only selfproclaimed spiritual purer than thou can join
in worshipping the lies





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03 May 2019, 10:31 am

“It was like, I had no clue that's why people did it (spent time interacting socially),” she said. “I was supposed to be learning something about them? With all that noise going on, and focusing on not aspirating and all the other things I had to focus on?”

This.
Now, people think I'm a b***h.
Back then it was cause, "She's shy."

I have no room for mistake it feels.
Yet, there are so many miscommunications between people.

I get mad and start complaining and focus on the problem- I guess that's why people think I'm disgusting or a b***h.

That's what someone I know actually said to me. "That's disgusting because of this and because it keeps you from doing this? Why is it so important or hard when you need to find a place to live?"
Because she doesn't want me to stay at her house.



blazingstar
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03 May 2019, 12:43 pm

I relate especially to the "growing up wild" bit.

I think the interventions in place now would have stifled me to death.


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Amity
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03 May 2019, 3:00 pm

Not so certain about growing up in the wild being an advantage, it wasn't for me. Good to see this kind of research, it gives me hope and made me wonder if there is a link between the decline in social communication over the lifespan and the over use of masking.



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03 May 2019, 3:11 pm

One aspect that I find very hard to deal with is the way that decades of masking has made a rod for my own back. So many people, some of whom I really care about, have only ever known that version of me. I've recognised that dropping the mask is good for my self-esteem, energy levels, and mental health, especially as the stamina to do it is gradually declining. But that means having to deal with people who perceive that I've "got worse" as my autistic traits show more, that I'm no longer "trying hard enough" to compensate, and people's inertia about getting to know the "new me". I've secretly and silently done all the work of translating between their perception of the world and mine, and it can be hard to make them see why I would need them to make accommodations now because, in their eyes, I never needed them before, even though they may be well aware of the mental health problems I've suffered over the years as a consequence.


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BTDT
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03 May 2019, 4:25 pm

It is reversed for me. My co-workers need me more than ever. My skills and experience allow me to quickly resolve issues and make it way easier for those around me. I routinely solve stuff based on rote memory on what I remember. Wasn't OK in school, but it is now.



Tirips
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06 May 2019, 9:02 pm

Wow, interesting, glad I found this before I go back to therapy next week. Will discuss the article with this to my therapist. I've definitely noticed alot of changed within the past 2 years

Just turned a few months ago, and for about 5-6 months I feel as if my social , logical , senses have slowly become worse. It's scary because I don't know what my mindset will be over the years. Both of my therapist / psychiatrist noticed it. None of the meds give me really work, my sister for my 30th bday gave me a vape pen to use for CBD oil and it's really calmed anxiety down and cuts the chances of me relapsing on pills / cutting. It does help me remain ok when I interact with the public, but it's never a long lasting feeling, as if I can still feel the stigma of not being able to really communicate like I did years ago in the back of my mind.



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06 May 2019, 9:33 pm

For those of us who are older and autistic, camouflaging has been an elementary part of our lives. The article makes sense to me when it mentions that it's not something that's outgrown or practiced away.

Autistic burn out is so real and it builds over time to a point for me where I finally thought: "I just don't want to do it anymore". Masking, for example is disingenuously altering your personality to please others. I think autistic people get to a point (I'd say most often between 40-50 years old) where they decide it's not worth it or at least they do it less or care less about what people think.

I too fear that young autistic children today will grow up to be perpetually dependent when many of them might otherwise not be if the level and breadth of therapies were actually less.



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06 May 2019, 10:41 pm

Magna wrote:
I too fear that young autistic children today will grow up to be perpetually dependent when many of them might otherwise not be if the level and breadth of therapies were actually less.

When people say that the low priority of research into adult autism is justified by the needs of children with autism, I feel they are being very short-sighted. Aside from possibly helping adults and being able to better validate childhood interventions, there's a community full of lived experience out here that isn't being tapped. The behaviorists don't want us, because so many of us are living proof that, while masking can be helpful, it can have significant side-effects; burn-outs and low self-esteem. I'm not suggesting that we should all rush out and become mentors, but there has to be a better way to take the best of what we have learned and pass it down to following generations, their parents, their educators, etc. and starting at a younger age than when they might accidentally stumble across a helpful forum. If the professionals had all the answers, there'd be no need for places like WP.


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languagehopper
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19 Jun 2019, 5:43 pm

I find social communication much harder now. When I was younger I assumed I could do what anyone else could do. Now I know I can't. And anyway I know I don't like it so I am less motivated too.
I think it is more obvious how odd I am now as fifty plus year old women aren't supposed to be scruffy and undignified. And they are supposed to know what to say not get all anxious and want to run and hide if someone asks them a question, or even looks at them as if they might speak to them. I gave up answering the phone years ago and rarely leave the house.
The last time I saw a doctor she blamed all my problems on the painkillers she had talked me into taking for fibromyalgia. I couldn't begin to explain to her how inaccurate that was as my throat closed up and I couldn't speak so I haven't been back in over five years. I stopped taking the painkillers as I hadn't wanted to in the first place. I managed the pain by starting to listen to music constantly so I don't f ocus on it. But I now can't cope without the headphones which has thrown up yet another barrier to communication!


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Max1951
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20 Jun 2019, 7:48 am

I thought that my social capabilities had deteriorated due to retirement. I used to interact with people in a large office. But now, I seldom interact with anyone IRL outside of immediate family, and I am not as smooth with my camouflaging when interactng with others.

Camouflaging has always worked well for me, insofar as getting along in life. But camouflaging does force you into acting out a life rather than really living one; into being what you think others what you to be, instead of what you yourself want to be. I couldn't even get as far as determining the life that I wanted to live. I was too busy trying to ascertain if I was doing life right, in the eyes of other people. So I am a gay man who chose to lead a straight life in order to please others. So I have extra incentive to lose who I really am. I can understand burnout. I think that what keeps me from burning out is that over the years I have lost sight of what life I want to live. Camouflaging does that. Decades of acting like someone else makes you forget who you are.



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22 Jun 2019, 2:40 pm

The Asperger Autism NEtwork (AANE) addresses concerns for aging (HFA) adults. From being on AANE's mailing list, I received info. on a conference devoted to concerns/resources for HFA adults 55 and older. www.aane.org