How Diagnosis Is Life-Changing for Autistic women

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ASPartOfMe
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19 Mar 2022, 10:53 am

A personal perspective.

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I have administered the Autism Diagnostic Interview the Revised Addition (ADI-R) 132 times as of today. I have done autism testing and treatment for six years now. Every day for six years, I got up and administered test after test without ever realizing that I had autism. I sat with autistic people and asked them the same lengthy series of test questions for years and I never saw myself in any of those questions. I also did not realize I was anxious. This is particularly ironic because when I asked my 10-year-old son what Mommy gets stressed about, he didn’t hesitate for a second before he said "everything."


Last year, the ADI-R was administered to me. I am autistic and I think my utter lack of self-awareness is the epitome of one of the things I struggle with most, alexithymia. According to an article on the topic in Scientific American by Deborah Serani, “The clinical term for this experience is alexithymia and it is defined as the inability to recognize emotions and their subtleties and textures. Alexithymia throws a monkey wrench into a person’s ability to know their own self-experience." For me, I was so blind to my own inner workings that I had frequently described myself as a chill and relaxed person. I am, in fact, one of the most tightly wound people you will ever meet. Alexithymia also made me blind to my own autism.

I am particularly adept at reading the emotional states of others when they are independent of myself. I am gifted and I have been a therapist for 20 years. I can help people see their own emotional states even when they have alexithymia, but with regards to my own emotions and the emotions of others as they relate to me, I am completely and utterly blind.

I have also fallen victim to one of the most common problems associated with women with autism: misconception and misdiagnosis. I have fallen victim to this even in my own understanding of myself.

I have watched Hannah Gadsby’s Douglas on Netflix 12 times, and in it, she describes getting her diagnosis as getting the “keys to the kingdom of herself." That is how I felt when I got my diagnosis. I felt like for the first time I saw and understood myself in a real way. It was ground shaking. All my ruinous friendships, tragic relationships, victimizations, and the way people stared at me like I had lobsters coming out of my ears half the time suddenly made sense.

All my life, I had beaten myself up for these things. I am an intelligent and educated woman with a plethora of accomplishments and successes. How is it that I can be conned by a 30-year-old vacuum cleaner salesman with no skills or intelligence? How is it that I cannot walk in a room of peers and leave without feeling like they all are terrified of me? How is it that I can't have a basic conversation with adults? How is it I can't understand basic social rules and cues without others reminding me? As a child, I was continuously called weird and difficult. People have frequently asked me, "What is wrong with you?" I have spent a lifetime trying to find ways to blend in but I have been unable to in most settings. My self-loathing on this matter has been all-consuming.

So, when I got my diagnosis of autism, it was like there was suddenly an explosive light that emerged in the darkness of all my mistakes. I am not broken. I am not just a b***h. I am autistic. According to Leedham, Thompson, Smith, and Freeth’s (Autism, 2019) findings, late diagnosis for women with autism facilitates the transition from “being self-critical to self-compassionate, coupled with an increased sense of agency.” This idea saved me; the idea that I could look at myself with compassion and love. All my mistakes were not me being a failure, they were examples of the way I am different and are opportunities for me to learn and grow and embrace that difference.

For me, the idea of self-compassion summarizes everything I know I want to share with women and all people with autism and everything I want other clinicians to understand about working with people with autism. Those of us with autism need to let go of our self-criticism and embrace self-compassion. We need to learn to love the way we think and adapt to a world that is different from us without changing ourselves or compromising ourselves because we are worthy of compassion and love. Every day now when I work with my clients on the spectrum, I want to say the same thing over and over: "Find self-compassion. Love the ways your mind is different. You are beautiful."


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autisticelders
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19 Mar 2022, 4:19 pm

Diagnosis at age 68 came as a huge relief! My life has changed forever and for the good.


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SendInTheClowns
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19 Mar 2022, 9:22 pm

Validation is transformative. Finally, after very late diagnosis, I found my tribe, I knew them and they recognised and acknowledged me as belonging to it. Belonging+validation facilitates self acceptance, freeing us to gather up the strands of experience within the new awareness of what made our lives so hard, and the process of integrating new knowledge with past experiences was life changing for me too. It is sad that unaware AS women are still misdiagnosed and marginalised, confused and internalising harmful NT judgment and exclusion. I hope they find their way here as I did, when I wasn't even looking.



SharonB
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22 Mar 2022, 10:31 am

Thank you for sharing.

I relate to the not-knowing I was highly anxious - it's the water may of us swim in.

Interesting that she was/is the scary type. I was/am the sweet but glimpse of scary type.

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Those of us with autism need to let go of our self-criticism and embrace self-compassion.


I need a button for that. Like a button I press and it happens, or perhaps it would be a interdimensional portal I would go through, or perhaps simply a large button to pin to my shirt as a reminder. :wink:



orbweaver
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15 Jun 2022, 7:15 pm

I was diagnosed at 31 but I basically un-diagnosed myself for 14 years between 2008-2022, between a combination of an ex-partner who didn't believe I was autistic (just selfish/immature/etc) and later clinicians that disagreed with the previous clinicians who *did* believe I was autistic (though I'm 100% convinced that if I hadn't quit the last therapist, she would have come around to something because I was shutting down/going mute in session.)

What followed were 14 years of hell wherein I had lost the entire map to my life, including two burnouts and several years out of the workforce.


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IsabellaLinton
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15 Jun 2022, 7:49 pm

Diagnosed: A month before I turned 50.

It was 49 years of having no idea what was "wrong" with me.
Then about five months waiting for my assessment.

It wasn't so much the yes / no that was important to me.
It was all the details of the individual tests.
It really helped me frame the background to my PTSD.



Sweetleaf
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15 Jun 2022, 7:56 pm

I mean it helped me understand I had a neurological difference, and my sensory issues were/are real, even if other people didn't understand them.


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Nic na Mara
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23 Jun 2022, 11:52 am

It's few month ago I got the diagnosis of Asperger and now I can say, it changes everything for the better. Because of my knowledge about who I am, finally I am self-confident enough to recognize, what the NT's doing to me AND that they are not right, when they criticize my behavior in every way, because they doesn't want to understand.



Rita687
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21 Sep 2022, 8:49 pm

I was never officially diagnosed but I am pretty sure I have some form of autism. All my life I have been very awkward and bullied almost everywhere I go. I was extremely suicidal for a while years ago because I just didn’t get what was “wrong” with me. I’ve had long term relationships that always end up emotionally abusive. My ex I am in the process of leaving now constantly called me the r- word and told me one time he was only with me because he felt sorry for me. I have almost no friends and feel safer isolating myself. I’m very lonely but am afraid to connect to people because I feel like they will always eventually turn on me. I try to take one day at a time sometimes



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21 Sep 2022, 9:52 pm

Welcome Rita687…. Yes recognize lots of what you wrote about myself . But my relationships are usually pretty good when I find good people . Many many years before that ever happened .
Totally get the one day at a time thing . Hope you have found good ways to get through possible meltdowns.


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blueraspberry
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01 Dec 2022, 1:53 pm

I'm not sure which thread this goes with but I thought of a metaphor or something to explain how I've been feeling and wanted to share. Let me know your thoughts :)

Everyone has a machine in their head. For most people, when a certain input goes in, the output is 2. For me, the output for that input is 12. My machine isn't broken or wrong; it just produces something different than the normal output. I've learned that my output isn't the same as others so I developed a calculation to convert my output to theirs. Doing this calculation is tiring and takes a lot of work. Sometimes I make a mistake with my calculation and report 3 or 5 instead of 2. This is especially likely when I'm tired. Or the calculation just didn't work for reasons I don't understand. Sometimes I report 12. Maybe I forgot to do the calculation. Maybe I wanted to save my energy for later. Maybe I was completely out of energy. Maybe I just didn't want to do it and wanted to stick with my answer, not caring that it's different. If I don't report 2, this can lead to people being confused, judging me, or being annoyed that I didn't report the same answer as them.



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01 Dec 2022, 3:30 pm

blueraspberry wrote:
I'm not sure which thread this goes with but I thought of a metaphor or something to explain how I've been feeling and wanted to share. Let me know your thoughts :)

Everyone has a machine in their head. For most people, when a certain input goes in, the output is 2. For me, the output for that input is 12. My machine isn't broken or wrong; it just produces something different than the normal output. I've learned that my output isn't the same as others so I developed a calculation to convert my output to theirs. Doing this calculation is tiring and takes a lot of work. Sometimes I make a mistake with my calculation and report 3 or 5 instead of 2. This is especially likely when I'm tired. Or the calculation just didn't work for reasons I don't understand. Sometimes I report 12. Maybe I forgot to do the calculation. Maybe I wanted to save my energy for later. Maybe I was completely out of energy. Maybe I just didn't want to do it and wanted to stick with my answer, not caring that it's different. If I don't report 2, this can lead to people being confused, judging me, or being annoyed that I didn't report the same answer as them.


Yes … :D Love the way you put it into mathematical terms . You have stated a lot of my feeling in dealing with other people
Most of the time . And watching it happen in real time around as you interact is a phenomina that it has only become more recently transparent to me as i interact with people these days. Where’s before the entire thing was kinda confusing to me .
And periodically felt much alienation . Nowadays, most times i just watch as the interactions unfold around me.
And do not concern myself near as much about judgements .
And am going quiet when I think my input may only confuse them . If am quick enough to see it coming.
The fatigue issues in processing is a big one for me too. Often I really do try to avoid people when I am tired .
And try to rest . You sound pretty astute to have devised the numeric method of understanding the situation.

Welcome to the site Blueaspberry :D


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SharonB
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01 Dec 2022, 7:17 pm

blueraspberry, I relate. I am having a chuckle thinking about announcing at my workplace, "I know you expect a '2' aaaaaaand..."

All the times I provided a deliverable and the initial response was WTH and then later I got an "ah-ha!" (and if I didn't, it wasn't the place for me). Even when I ask beforehand, or do reviews, the NTs are so used to getting their "2" they can't describe it. It's "just 2, obvs".

My allistic sister expects a 2, I came out with a 12 and she translates it as a 4,523. Who's doing what math? :(

12, 12, 12, 12....



snissen
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15 Dec 2022, 2:18 am

autisticelders wrote:
Diagnosis at age 68 came as a huge relief! My life has changed forever and for the good.

Me too! Even the 68 age. I'm starting to feel happy now, and appreciative and grateful.