Newer members perspectives on the Autism Spectrum.

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JustFoundHere
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18 Sep 2021, 3:32 pm

I'm inviting newer WP members to offer (much needed) fresh perspectives on High Functioning Autism (HFA).

From my own personal experiences, I clearly sense that (HFA) presents that dichotomy of 'not being disabled enough, yet not being able enough' - which might be described as being "caught in the middle." Here on WP, there is way too little in the way of people who choose to who share similarities to my experiences with HFA.

Lately, my experiences here on WP have attempted to "break the ice so to speak" - not surprisingly, being met with too little (or even misunderstood) interest.

Several of my latest posts (LINK) can yield the gist of just how I'm specifically responding to my experiences with HFA.

Most notably, I'm asking people experienced with encouraging healthy AS/NT friendships to become active here on WP.

Please bring this discussion-thread to their attention!

Thank-you

LINK: search.php?author_id=130391&sr=posts



Double Retired
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18 Sep 2021, 10:04 pm

Can you define "newer"?


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JustFoundHere
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19 Sep 2021, 3:55 pm

Double Retired wrote:
Can you define "newer"?


Newer members can naturally offer fresh perspectives - yet any WP members are welcome to post in this discussion thread!



Double Retired
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19 Sep 2021, 4:57 pm

OK. I'm still unclear on whether I'm "newer", but I'm pretty sure I'm "newish"....

Before 2019 I had not heard of the Autism Spectrum. But I had heard of Autism and Asperger's Syndrome, and I was very uninformed on both. And I would have expected the symptoms to always be severe for Autism and to always be at least moderate for Asperger's.

But around the end of 2018, beginning of 2019, I learned that my Dad had seen a kid my sister was a nanny for and said he was doing the same "weird" things I used to do. And I had previously heard they thought the kid might be Autistic. I was very surprised by this. Over the decades I had become increasingly suspicious I was "different" but there is no way I would've thought I was Autistic. I do not match the incorrect preconceptions I had about it.

Because I was suspicious I was "different" and was very curious to know what the difference was, I took the hint and read up a little about Autism--with the expectation that I would end up dismissing it. Yeah. It didn't turn out that way. The Internet told me (and my bride) a lot about the Autism Spectrum and a lot of what we read sounded like me. And I found the AQ test and it pointed at Autism, too. So I got a formal diagnosis and later in 2019 I got the formal diagnosis of Autism Spectrum Disorder, Level 1 (Mild).

So, I only learned I was Autistic in 2019, when I was 64. I retired in 2011 so my interactions with other people were voluntarily limited--consistent with being a strong Introvert who was comfortably retired and who had a supportive ADHD bride who could often serve as my proxy when dealing with people (including my family!).

And then came holidays, taxes, surgery, and then a Pandemic. Because of these me and my diagnosis have not had much opportunity to get out and interact with friends and acquaintances. My perspective will therefore, for the time-being, be based upon decades of being Autistic and not knowing it.

What little I can observe:

-.--I suspect most folk outside the world of Autism are as clueless about it as I had been. I expect that if the Pandemic eases enough I can go out and interact with folk I know, I will need to do some education when I mention I am on the Spectrum.

-.--When I asked Dad about it he said he and Mom thought I was doing weird things but they decided I wasn't misbehaving, I was just doing weird things...so they decided not to punish me! I think that roughly means my parents unknowingly practiced something resembling Autism Acceptance when raising me. I am so glad of that! I think my experience suggests that might be a good approach with some other Autistic children, as well.

-.--I am married. She is an ADHD Allistic. It has taken her quite some time to get somewhat accustomed to me and my "quirks". But, I am consistent so I think that helps her predict my behavior. And we both have senses of humor--that helps a lot! And I think my retirement helped an awful lot--work was very stressful for me so I was often stressed before I retired.


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JustFoundHere
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19 Sep 2021, 5:53 pm

Double Retired wrote:
OK. I'm still unclear on whether I'm "newer", but I'm pretty sure I'm "newish"....

Before 2019 I had not heard of the Autism Spectrum. But I had heard of Autism and Asperger's Syndrome, and I was very uninformed on both. And I would have expected the symptoms to always be severe for Autism and to always be at least moderate for Asperger's.

But around the end of 2018, beginning of 2019, I learned that my Dad had seen a kid my sister was a nanny for and said he was doing the same "weird" things I used to do. And I had previously heard they thought the kid might be Autistic. I was very surprised by this. Over the decades I had become increasingly suspicious I was "different" but there is no way I would've thought I was Autistic. I do not match the incorrect preconceptions I had about it.

Because I was suspicious I was "different" and was very curious to know what the difference was, I took the hint and read up a little about Autism--with the expectation that I would end up dismissing it. Yeah. It didn't turn out that way. The Internet told me (and my bride) a lot about the Autism Spectrum and a lot of what we read sounded like me. And I found the AQ test and it pointed at Autism, too. So I got a formal diagnosis and later in 2019 I got the formal diagnosis of Autism Spectrum Disorder, Level 1 (Mild).

So, I only learned I was Autistic in 2019, when I was 64. I retired in 2011 so my interactions with other people were voluntarily limited--consistent with being a strong Introvert who was comfortably retired and who had a supportive ADHD bride who could often serve as my proxy when dealing with people (including my family!).

And then came holidays, taxes, surgery, and then a Pandemic. Because of these me and my diagnosis have not had much opportunity to get out and interact with friends and acquaintances. My perspective will therefore, for the time-being, be based upon decades of being Autistic and not knowing it.

What little I can observe:

-.--I suspect most folk outside the world of Autism are as clueless about it as I had been. I expect that if the Pandemic eases enough I can go out and interact with folk I know, I will need to do some education when I mention I am on the Spectrum.

-.--When I asked Dad about it he said he and Mom thought I was doing weird things but they decided I wasn't misbehaving, I was just doing weird things...so they decided not to punish me! I think that roughly means my parents unknowingly practiced something resembling Autism Acceptance when raising me. I am so glad of that! I think my experience suggests that might be a good approach with some other Autistic children, as well.

-.--I am married. She is an ADHD Allistic. It has taken her quite some time to get somewhat accustomed to me and my "quirks". But, I am consistent so I think that helps her predict my behavior. And we both have senses of humor--that helps a lot! And I think my retirement helped an awful lot--work was very stressful for me so I was often stressed before I retired.


Thank-you for your response.

To clarify: Newer or older WP members can be judged as to how long a person has been a WP member, number of posts.

My diagnosis of the Autism Spectrum (As Aspergers) wasn't until my early 30s- almost half my lifetime! "Autism-like" characteristics only were mentioned once - yet not taken seriously within the jumble of labels, diagnosis,' etc. etc. that I have long-ago increasingly distanced myself.

Yet, to this day one thing remains the same, High Functioning Autism (HFA) presents that dilemma of 'not being disabled enough, yet not being able enough' - as being described as being "caught in the middle"

DoubleRetired: Do you feel your caught in that "overlooked middle" regarding the Autism Spectrum?'

My concern here is that lack of interest here on WP in truly addressing those of us "caught in the middle" seems to become like a self-fulfilling prophecy of sorts - that is those feedback loops which are keeping an important constituency here on WP tied in knots!

The purpose of this discussion-thread is to determine successful, proven approaches to best serve those of us with HFA who are caught in that confounding middle- to untangle those knots!!



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19 Sep 2021, 8:53 pm

JustFoundHere wrote:
DoubleRetired: Do you feel your caught in that "overlooked middle" regarding the Autism Spectrum?'

My concern here is that lack of interest here on WP in truly addressing those of us "caught in the middle" seems to become like a self-fulfilling prophecy of sorts - that is those feedback loops which are keeping an important constituency here on WP tied in knots!

The purpose of this discussion-thread is to determine successful, proven approaches to best serve those of us with HFA who are caught in that confounding middle- to untangle those knots!!
I don't know that I was in the "overlooked middle'. I think I was near an edge...and near enough to the edge that it was a fluke my Autism was identified.

Granted, I am on the edge of being NT. I'm not exactly an NT...but I mostly passed as one for more than six decades.

My personal opinion is that the world could be adjusted to better meet my needs. But I think the adjustments I want would also benefit NTs. Their benefit, however, might not be as clear so their concern might be less.

One change, Medical Care. Even before I was diagnosed I was asking medical providers to put things in writing and explain things simply. Sometimes I got that, sometimes I didn't; since I've been diagnosed I think the diagnosis strengthens the case but still, sometimes I get it, sometimes I don't.

I can reference:

----"AASPIRE Healthcare Toolkit: How Autism Can Affect Healthcare"
----"Doctors must avoid jargon when talking to patients, royal college says"

Note that the first wants says the change will help Aspies, the second is not specifically targeting Aspies.

And there is also:

----"Teacher's post on why her neurotypical classroom looks like a special education one goes viral"
----"Employer Guide to Supervising Individuals with Autism Spectrum Disorders (ASD)"

All four of these are things that would help Aspies but I believe they would also benefit NTs.


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autisticelders
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20 Sep 2021, 6:53 am

diagnosed about 2 years ago, my diagnosis anniversary is at the end of this month. I joined up here about that time and have been busy sorting out my past. I was 3 days short of age 68 at the time of diagnosis and will be 70 in Oct. Quite a change of perspective. The struggles with so much of my every day life remain the same but I can make peace with the past now that I understand how autism worked in so much of my life without my knowing or understanding what was happening. I can go back on old traumas and misunderstandings now and figure out "what really happened" when I factor in the autism.
I can forgive others, too, nobody knew and I see so many of my struggles were worse because of autistic family members. Nobody knew!

I am not sure what sort of input you want about perspectives. It has been such a relief to finally understand my past, to find out about my neurology, and to figure out a new way to live which makes it easier on my struggles and stress of everyday living.

In the USA diagnosis comes with numbered levels of functioning, 1 is comparable to what used to be called "Aspergers" or what some people refer to as high functioning. "needing little support in everyday liviing", 2 is people who need moderate support, 3 is those who need a lot of support.
This is still function labeling as far as I am concerned, but probably necessary to sort how much help any individual needs and to define disability, etc for government disability and the like.

I am not sure how "high functioning" I really am, with 25th percentile visual processing and 35th percentile visual processing. I think the spectrum is wider and deeper than the level numbers would indicate, with many of us struggling deeply in many portions of our lives while we perform "as expected" or exceed standards in others.

I am not sure if this gives you the sort of input you seek? Are there specific questions you could ask to help us give you the information you are looking for? Best wishes



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20 Sep 2021, 1:27 pm

As I mentioned, I've long-ago put labels, diagnosis, quibbling etc. aside in favor of concrete approaches which might just best prove beneficial regarding (HFA).

To review:

* Becoming acquainted with people experienced with AS/NT friendships is a must.

* LINK details how arts-related activities might just "break the ice" for AS/NT friendships.

LINK: viewtopic.php?t=395602



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21 Sep 2021, 2:54 pm

JustFoundHere wrote:
As I mentioned, I've long-ago put labels, diagnosis, quibbling etc. aside in favor of concrete approaches which might just best prove beneficial regarding (HFA).

To review:

* Becoming acquainted with people experienced with AS/NT friendships is a must.

* LINK details how arts-related activities might just "break the ice" for AS/NT friendships.

LINK: viewtopic.php?t=395602


ADDENDUM: Becoming acquainted with people experienced with AS/NT friendships can offer excellent experiences for setting the stage in developing intimate relationships!



autisticelders
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23 Sep 2021, 6:15 am

Finding friends. I found something that worked for me. I will never be a social butterfly, but now I have a few local people who I can contact to do things with off and on. I have noticed that many autistic folks struggle with finding friendship (or love) and balancing the idea of social stuff with the need for quiet and independence. I have had 4 good close friendships over the years and I sat one day ( after diagnosis and with better self understanding) and thought about what things they had in common. here is what I learned and how I used it.
We were from the same social and economic class
We were in close proximity to each other, not cross country or overseas from each other
We were socially awkward
We shared interests.
At the same time I was learning about the things my friendships had in common, I also joined facebook groups in my home state , all of which were about my interests.
I was able to learn about the things that interested me and get to know the members of the group as individuals and interact with them long before we ever met face to face.
I do best with words and written information, so this worked very well for me.
After some time passed, somebody in one of the groups suggested that interested members should meet someplace and do our activity together.
I did not go because it was a big group gathering and I can't handle big venues with lots of people.
Later people posted about the activities of the day, and there were smaller groups that had gone together.
Somebody invited me to participate in one of those groups. There were 5 of us.
Of those 4 folks, I found one was very compatible and that she lived close by.
We have since done that activity together several times and are getting to know each other.
Since then, I have joined a couple of other groups and found folks the same way. Getting to know each other ahead of time on the internet and then scheduling a shared activity seems to work.
Using my strongest interests to find others who like the same thing is also a way to know we will have things to talk about, and it has worked very well to build contacts around the state.
When I am going to a place to do my activity, I look on the group to see who is near there and invite them to go too. ( assuming I like them on line and they don't scare me!).
Of course we have to use common sense about meeting strangers , take safety precautions, and be wise in how we proceed, but by using a group membership about our interests, we can sort of stack things in favor of meeting somebody we can interact with.
Of all the meetings I have had now with group members, I can say that the majority of them have been successful and I feel as if I can have a "social life" whenever I want it by contacting others in the group.
Some group members even post that they will be in a particular place at a particular time and invite the members of the group who can, to meet there.
I don't know if this will help anybody but I thought I would put it up just in case it is of use to members seeking more social interaction.

Note this is something I wrote in another group. It pertains to a way to find friends that share common interests. Perhaps this is the sort of thing you want to see?



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23 Sep 2021, 4:04 pm

autisticelders wrote:
Finding friends. I found something that worked for me. I will never be a social butterfly, but now I have a few local people who I can contact to do things with off and on. I have noticed that many autistic folks struggle with finding friendship (or love) and balancing the idea of social stuff with the need for quiet and independence. I have had 4 good close friendships over the years and I sat one day ( after diagnosis and with better self understanding) and thought about what things they had in common. here is what I learned and how I used it.
We were from the same social and economic class
We were in close proximity to each other, not cross country or overseas from each other
We were socially awkward
We shared interests.
At the same time I was learning about the things my friendships had in common, I also joined facebook groups in my home state , all of which were about my interests.
I was able to learn about the things that interested me and get to know the members of the group as individuals and interact with them long before we ever met face to face.
I do best with words and written information, so this worked very well for me.
After some time passed, somebody in one of the groups suggested that interested members should meet someplace and do our activity together.
I did not go because it was a big group gathering and I can't handle big venues with lots of people.
Later people posted about the activities of the day, and there were smaller groups that had gone together.
Somebody invited me to participate in one of those groups. There were 5 of us.
Of those 4 folks, I found one was very compatible and that she lived close by.
We have since done that activity together several times and are getting to know each other.
Since then, I have joined a couple of other groups and found folks the same way. Getting to know each other ahead of time on the internet and then scheduling a shared activity seems to work.
Using my strongest interests to find others who like the same thing is also a way to know we will have things to talk about, and it has worked very well to build contacts around the state.
When I am going to a place to do my activity, I look on the group to see who is near there and invite them to go too. ( assuming I like them on line and they don't scare me!).
Of course we have to use common sense about meeting strangers , take safety precautions, and be wise in how we proceed, but by using a group membership about our interests, we can sort of stack things in favor of meeting somebody we can interact with.
Of all the meetings I have had now with group members, I can say that the majority of them have been successful and I feel as if I can have a "social life" whenever I want it by contacting others in the group.
Some group members even post that they will be in a particular place at a particular time and invite the members of the group who can, to meet there.
I don't know if this will help anybody but I thought I would put it up just in case it is of use to members seeking more social interaction.

Note this is something I wrote in another group. It pertains to a way to find friends that share common interests. Perhaps this is the sort of thing you want to see?


Yes, this is the sort of thing I want to see.

I do not like meetings in large groups of more than a few people.

I've asked here on WP (LINK) if arts programs e.g., painting, drawing, sculpture, photography might be an "ice-breaker of sorts" in developing friendships? Such activities have been hard to come by in our Calif. community (esp. on account of the pandemic) - yet a nearby small city has ample arts and culture offerings.

You list you're location as Alpena, MI. Any arts programs of interest in the Alpena Region? Any experiences with traveling in a small group to Toronto? I've heard great things about the arts & culture of Toronto.

LINK: viewtopic.php?t=395602



autisticelders
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23 Sep 2021, 6:06 pm

this is a community of about 10 thousand people, even so there are 2 theatres and 3 art galleries, as well as 2 museums. there are multiple opportunities to join community "lifelong learner" classes and to teach them, as well as to join related groups. there are cooking classes and art project lessons, and many ways to join in community activities.
I have not been to Toronto. Husband and myself had begun to look into obtaining passports just before the borders were closed due to Covid, we have not followed up on it yet, and might never. Sending best wishes!



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01 Oct 2021, 6:01 pm

Anybody reassessing this discussion-thread? Thoughts, experiences??



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02 Oct 2021, 11:55 am

JustFoundHere wrote:
Anybody reassessing this discussion-thread? Thoughts, experiences??



I am assessing this thread, yes. I will try to contribute, but I am not quite sure exactly what you are asking for. Anectodal experiences? Perspectives?

Here goes:
In general, I have had a few NT relationships, one very long lasting, over 10 years, but I never have had that deep sense of closeness I would like to cultivate. Even though I do love and appreciate my NT friends, we simply can't and don't click in the ways I need to feel close to others. Our brains are much too different. Being newly diagnosed helps me explain some of the reasons why this is.

As for falling into the HF category, yes, I can keep a job, and am considered good at it- enough to be promoted and continue to grow in my profession, but I am still seen as a bit odd, very sensitive, hyperfocused, literal minded and inflexible. This has been a struggle and has cost me advancements in the past, so moving up, while possible, has been 10 times more work for me. I can live alone, take care of myself etc, but it isn't without a struggle at times either- calling repair people, being safety minded, not being taken advantage of by others, all are issues I face, even though on paper it seems things are going swimmingly for me.