Very late Diagnosis - identification at a late, some notes..

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ApricitiousRory
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29 Apr 2021, 12:50 pm

So glad this thread was resurrected. I turn 58 next week and am finally scheduled for adult assessment at the end of May. So much of what's been posted here is relatable for me.

We are strong. That's what's been on my mind lately while completing the pre-eval questionnaire. Reviewing the past through an aspie lens can be disturbing, but it also brings into focus just how much of a strong survivor I am.

I'm still anxious about the impending assessment and likely diagnosis. It's hard for me to see how he won't diagnose ASD, but my aspie therapist keeps telling me there's nothing for me to worry about. She clearly sees me as autistic, and that means a lot. Unfortunately, she isn't qualified to make a clinical diagnosis. She has some experience with the clinician who will do my assessment, and assures me that his report will be comprehensive and helpful. I sure hope so.

Thanks for sharing the link to the double empathy article. That topic really fascinates me!


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browneyedgirlslowingdown
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08 May 2021, 9:34 am

Velorum wrote:
I'm a clinician working with children with Autism. Mental Health Issues and Intellectual Disabilities

Self diagnosed many years ago, formally diagnosed at the beginning of 2020 aged 60

I mask far less now than I used to and am calmer and less stressed than I have ever been


Me too, with the masking less, it is a very different experience to not mask, or at least to limit it some


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Your broader autism cluster (Aspie) score: 153 of 200
Your neurotypical (non-autistic) score: 50 of 200
You are very likely on the broader autism cluster (Aspie)
Systemising Quotient (SQ) 78
Empathy Quotient (EQ) 41
CAT-Q 156 Compensation 56 Masking 48 Assimilation 52


James_Ladrang
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16 May 2021, 9:56 am

Diagnosed 6 years ago, I found it a huge relief to finally understand why the world mostly kept me at arm's length. Since then I too have been able to cut back on masking and as a result I manage to have more spoons available most days.

On the downside, I now realise that through most of my life, most people did not respect me for the person I am. Instead, they treated me as the person they thought I should be, for their own convenience. I must emphasise that not everyone was disrespectful. However, as a result of this realisation I no longer hold in high esteem the majority of teachers, church leaders, officials and bosses as I did previously. I am left wondering what I might now be able to achieve in life, had I but had the opportunity of filling my potential through my years in education and employment. Now I am retired. I have little idea how to start any of the plans I had dreamt of for later life. The week no longer has structure. I feel cut adrift.

There is lots of help online for parents of autistic children, concerned to do the best for their offspring. There is growing help for autistic people to get through university and for those seeking employment. There is a ton of research into early diagnosis so interventions get the best chances to be of benefit. But for us latecomers, the survivors, what?



MrsPeel
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17 May 2021, 6:26 am

I agree with that.
It's the time I wasted pretending to be normal, the lost opportunities to develop my genuine autistic talents that rankles.
And frustration that even now, knowing what I know, I still find myself unable to adequately express to my seniors at work just what I could achieve on behalf of the department, if they would only allow me the opportunity and let me get on with it.



browneyedgirlslowingdown
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18 May 2021, 2:14 pm

James_Ladrang wrote:
Diagnosed 6 years ago, I found it a huge relief to finally understand why the world mostly kept me at arm's length. Since then I too have been able to cut back on masking and as a result I manage to have more spoons available most days.

On the downside, I now realise that through most of my life, most people did not respect me for the person I am. Instead, they treated me as the person they thought I should be, for their own convenience. I must emphasise that not everyone was disrespectful. However, as a result of this realisation I no longer hold in high esteem the majority of teachers, church leaders, officials and bosses as I did previously. I am left wondering what I might now be able to achieve in life, had I but had the opportunity of filling my potential through my years in education and employment. Now I am retired. I have little idea how to start any of the plans I had dreamt of for later life. The week no longer has structure. I feel cut adrift.

There is lots of help online for parents of autistic children, concerned to do the best for their offspring. There is growing help for autistic people to get through university and for those seeking employment. There is a ton of research into early diagnosis so interventions get the best chances to be of benefit. But for us latecomers, the survivors, what?


I read this, and I feel it deeply. I have been used too, so much that it is very nauseating. I can relate to the loss in the way I have viewed people previously, I do not respect them any longer and actually find their behavior to have been predatory. I also am wondering what now, as the things I thought I could do no longer seem realistic and so I feel detached from whatever path I was on, and maybe something else is revealing itself. I am not sure. All the relationships I have had, weren't really anything other than me meeting expectations of normalcy not really me being connected at all to anyone or anything. It's like people could see it on me, but they just exploited that. I feel that there are no supports around me, that I am still alone, but at least now, I have cleared out the unnecessary clutter and leaches that took advantage of me. Still though, I am unsure what to do now.

I realize I just kind of ranted. My head is still soaking this all in.


_________________
Diagnosed ASD 5/17/21
AQ 40/50
Your broader autism cluster (Aspie) score: 153 of 200
Your neurotypical (non-autistic) score: 50 of 200
You are very likely on the broader autism cluster (Aspie)
Systemising Quotient (SQ) 78
Empathy Quotient (EQ) 41
CAT-Q 156 Compensation 56 Masking 48 Assimilation 52


Minuteman
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20 May 2021, 1:54 pm

Add me to the list of people diagnosed in their 50s. I always knew I had a hard time in social situations -- hence the reason I was almost 30 when I had my first serious relationship. When I was a kid, my parents figured, "He's just shy. He'll grow out of it." I did grow out of it somewhat, but that was more out of trial and error.

But once I was diagnosed, everything made sense to me. My trouble interacting with people and my awkwardness in social situations was more than just shyness. I probably should have known there was something going on from noticing how many people find socializing to be as easy as riding a bike.

Another thing to keep in mind is that schools now pay closer attention to Asperger's/autism. The attitude in the '80s was "He gets good grades, so there can't be anything wrong with him." Schools had no idea that someone can be high-functioning and still have a neurological disorder. They're now also watching the cafeteria for the kids who eat their lunch alone. Once they see that, the school social worker swoops in and works with the kid instead of just assuming it's shyness.



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21 May 2021, 1:44 pm

I work with people with developmental disabilities including autism. Never dreamed I was also on the spectrum until I read an article about high functioning autistic women, less than 3 years ago. It was astounding. The penny dropped and suddenly my life made sense.

I am grateful I was born before special ed, ABA, etc. I had to figure it out by myself, bit by bit. A traumatic journey to be sure, but it was/is my own.

I relate to so much of what others have said here.


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21 May 2021, 8:52 pm

Minuteman wrote:
...once I was diagnosed, everything made sense to me.
...
Another thing to keep in mind is that schools now pay closer attention to Asperger's/autism. The attitude in the '80s was "He gets good grades, so there can't be anything wrong with him." Schools had no idea that someone can be high-functioning and still have a neurological disorder. They're now also watching the cafeteria for the kids who eat their lunch alone. Once they see that, the school social worker swoops in and works with the kid instead of just assuming it's shyness.


I am glad it makes sense to you now. For me too.

Soapbox: The diagnostic criteria remains broken or the professionals ignorant. They are not swooping in for my ASD-like daughter. My 4th-grade ASD-like daughter was not diagnosed with ASD. She is so similar to my mom (ASD like) and myself (recently ASD diagnosed): she gets good grades (in elementary school), makes eye contact, stims privately or in a "passing" way publicly (so far), she is one to watch and when she speaks she is direct. The professionals say she "chooses" to be alone at lunch and recess. They love that she "ignores" the classroom drama. She is intelligent and she is not shy, so it is her "choice". Yes. No. I hope I can support her sufficiently myself until she's diagnosed. I don't think we'll have to wait forty years for her ASD diagnosis, but I'm frustrated we have to wait still.



Wolf1066
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22 May 2021, 1:55 am

SharonB wrote:

Soapbox: The diagnostic criteria remains broken or the professionals ignorant. They are not swooping in for my ASD-like daughter. My 4th-grade ASD-like daughter was not diagnosed with ASD. She is so similar to my mom (ASD like) and myself (recently ASD diagnosed): she gets good grades (in elementary school), makes eye contact, stims privately or in a "passing" way publicly (so far), she is one to watch and when she speaks she is direct. The professionals say she "chooses" to be alone at lunch and recess. They love that she "ignores" the classroom drama. She is intelligent and she is not shy, so it is her "choice". Yes. No. I hope I can support her sufficiently myself until she's diagnosed. I don't think we'll have to wait forty years for her ASD diagnosis, but I'm frustrated we have to wait still.


Yeah. Similar issues with one of my children. If it weren't for the fact that I'm autistic and have a son who is diagnosed with ADHD, ODD and ASD and I've done a lot of reading, watched a lot of videos by ASD people (Aspergers from the Inside, Yo Samdy Sam etc) and can spot some of the clear markers - like an abnormally high sensitivity to stimuli - nothing would be done.
Passes OK at school for the most part and the school counsellor was quite surprised when I asked her to initiate a referral up to Child & Adolescent Mental Health Services for "J".
It wasn't until she started specifically looking for signs that she got the clues that I might be onto something and she and I co-wrote the referral with J also providing information that I was not aware of.
So now I've got a referral sorted out (CAMHS pays more attention to referrals from school than from parents) and an appointment for J in late June. J's 15 already.

The schools don't usually spot anything unless the child is practically crippled by the condition and can't function in class. More-subtle signs are passed of as "preferring" to eat/play/work alone, "choosing" not to get embroiled in classroom politics/dramas, "being picky" about where they sit etc...


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SharonB
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22 May 2021, 3:02 pm

Wolf1066 wrote:
...The schools don't usually spot anything unless the child is practically crippled by the condition and can't function in class. More-subtle signs are passed of as "preferring" to eat/play/work alone, "choosing" not to get embroiled in classroom politics/dramas, "being picky" about where they sit etc...


My daughter is "picky" also about where she sits. I'm glad to know I'm not alone. A cliché expression, but very true. It's crazy-making otherwise.

Is your child "J" on-board with the evaluation, or reluctant? How is your other child managing the diagnosis?



Wolf1066
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25 May 2021, 2:15 pm

SharonB wrote:
Is your child "J" on-board with the evaluation, or reluctant? How is your other child managing the diagnosis?

J's very much on-board with the evaluation and assisted with writing the referral letter. Has been seeing the school counsellor for quite some time now around issues with bullying and gender dysphoria and mentioned things of which I was not aware, such as self-harm (head banging and pinching, not cutting).

Other child - "T" - was relieved to get a diagnosis as it validated what he was feeling (was getting the dismissive "you just need to do X, stop doing Y" nonsense, with which we're no-doubt all familiar, as if it were a choice). Was not thrilled at being on medication for ADHD but that helped him get through high school. Now is off the medication and finding was of dealing with the impulse control issues. Is learning ways of managing ASD from me - limiting the number of stressful social situations, being mindful of how full the "people bucket" is getting and distancing himself before it hits overload etc.

What gets to me is that they classify any diagnosis later than a few years old as "late diagnosis" - and yet so many ASD people function "well enough" that diagnosis does not occur until much later. T was diagnosed at around age 14, J is 15 and only just going for an assessment - all because they're not Severity 2 or Severity 3 (to use DSM-V terminology) and don't have a Learning Disability co-morbidity, so their autism gets dismissed as "willfulness" or other not-helpful blame words with which I'm quite familiar due to having them levelled at me for more than 4 decades.


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SharonB
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29 May 2021, 1:00 am

Wolf1066 wrote:
What gets to me is that they classify any diagnosis later than a few years old as "late diagnosis" - and yet so many ASD people function "well enough" that diagnosis does not occur until much later. T was diagnosed at around age 14, J is 15 and only just going for an assessment - all because they're not Severity 2 or Severity 3 (to use DSM-V terminology) and don't have a Learning Disability co-morbidity, so their autism gets dismissed as "willfulness" or other not-helpful blame words with which I'm quite familiar due to having them levelled at me for more than 4 decades.

This is very helpful, thank you.

I've just started pointing out to my generally caring husband when he says "just do [this]" when my Executive Function is overwhelmed. No "justs" about it. To be fair, I may reverse that on him occasionally "it's right there! Just [listen/look/smell]!" when he's clueless. :wink: Can I say I learned that bad habit from others? Now to fully kick it aside.

What is interesting is that outwardly I appear to be low Severity, but my diagnosing psych suggested ---and I agree--- that internally I am mild to moderately Autistic. People just don't get it when I ask for help. (See what I just did there? :D ) Ah, well, I'm learning to articulate it: "I know I appear confident and to maintain this I need..."

Thanks for the conversation. Wishing you and yours well. I love the GOOD parental modelling you are doing. I am doing the best I can for my ASD-like (but not yet diagnosable) child.



Wolf1066
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29 May 2021, 4:11 am

SharonB wrote:
I've just started pointing out to my generally caring husband when he says "just do [this]" when my Executive Function is overwhelmed. No "justs" about it. To be fair, I may reverse that on him occasionally "it's right there! Just [listen/look/smell]!" when he's clueless. :wink: Can I say I learned that bad habit from others? Now to fully kick it aside.

What is interesting is that outwardly I appear to be low Severity, but my diagnosing psych suggested ---and I agree--- that internally I am mild to moderately Autistic. People just don't get it when I ask for help. (See what I just did there? :D ) Ah, well, I'm learning to articulate it: "I know I appear confident and to maintain this I need..."

Thanks for the conversation. Wishing you and yours well. I love the GOOD parental modelling you are doing. I am doing the best I can for my ASD-like (but not yet diagnosable) child.

Yeah, "just do x..." I know that song - tune and all the lyrics. :P

"Low Severity" is all about outward appearances.

Thing is with the "Severity" labels: they're based on how much care we require from others - how inconvenienced they are - rather than how much suffering we are experiencing. "Hey, as long as they don't need me to do anything, it's not severe at all."

Severity 2 and 3 are for ASD people who are less able to look after themselves and require carers to handle ADL and Executive Function issues etc.

If we can feed/clothe/bathe/toilet ourselves and negotiate interpersonal interactions sufficiently to get our own stuff done, we're not counted as "severe" - despite the fact that going to the supermarket might be one of the most stressful parts of your day and you come home drained from the exertion of doing it.

It's like the "High Functioning" vs "Low Functioning" nonsense that basically indicates whether or not your IQ is above or below 60 and therefore whether or not you need special care - it's ALL about them.

Come home from work and lock yourself in your room for 4 hours before you can face the simplest task? Fine, as long as you don't need any help with anything. Just about have a meltdown commuting into town? Doesn't matter so long as they don't have to render assistance. The lights, smells and sounds in this place are driving you up the wall? "Doesn't bother me any, just put up with it..."

"Severity One"/"High Functioning" labels mask a lot of suffering on the part of the autistic person.

Loving the chat. And thank you. :D


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Autism Quotient (AQ) test: 35/50
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Systemising Quotient (SQ) test: 89.0

Diagnosed 29 Jan 2021 - ASD Sev. 1 (Aspergers)


ApricitiousRory
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30 May 2021, 4:11 pm

Diagnosed this past Thursday with ASD, Level 1 (i.e. Aspergers), requiring support.

The 5 hour assessment itself went well, though I did have a minor meltdown during the process. It left me with a two day headache, too. On the first morning after getting the preliminary written diagnosis I felt...calm. Lighter, somehow. I realized that several of the traits adults and other kids had judged, punished, and bullied me for when I was young were actually undiagnosed autism. They weren’t moral or personal failures that could be overcome if I just tried harder. Or prayed harder.

I’m not broken, and as said in the OP’s post, I do not have ASD, I am ASD.


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ASPartOfMe
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31 May 2021, 2:59 pm

ApricitiousRory wrote:
Diagnosed this past Thursday with ASD, Level 1 (i.e. Aspergers), requiring support.

The 5 hour assessment itself went well, though I did have a minor meltdown during the process. It left me with a two day headache, too. On the first morning after getting the preliminary written diagnosis I felt...calm. Lighter, somehow. I realized that several of the traits adults and other kids had judged, punished, and bullied me for when I was young were actually undiagnosed autism. They weren’t moral or personal failures that could be overcome if I just tried harder. Or prayed harder.

I’m not broken, and as said in the OP’s post, I do not have ASD, I am ASD.

Congratulations


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wrench428
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03 Jun 2021, 9:49 am

I am new here and this is my first post.
I am 67 and just figured out (a few months ago) that I am an Aspie.
Self diagnosed. I see no need for professional conformation. I know I am right.
I didn't like it but I have accepted it and hope to be able to embrace it as time goes on.
It explains SO much of my life and is a relief to some extent.

Life was pretty good for me until my wife was diagnosed with Alzheimer 2013 and died April 2019.
We were together 24 years and the happiest of my life.
I did all I could for her and never abandoned her but after she was gone there was a huge hole in my life.
I got on the online dating thing and found what seemed to be the "Perfect Woman".
She just about drove me crazy and then I somehow discovered she is a covert narcissist.
I never knew anything about that stuff. Thought psychology was just a bunch of hooey.
That led me to believe I was a co-dependent and I guess that is true but not the underlying cause.
I always new I was different somehow but I compensated and did the best I could.
I would beat myself up and say " How can I be so smart and so stupid at the same time".
Well I understand now.


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