imposter syndrome and the fear of seeking a diagnosis

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SharonB
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28 Feb 2022, 10:27 am

Kt.Kpop wrote:
My first Psych Eval though, 12 years ago, showed all the traits of autism (depression, anxiety, OCD, problems with social interactions, etc.) but they never diagnosed me with the umbrella term of ASD. Instead, I was diagnosed with 6 other things.

That's what happened with my daughter a mere year and a half ago. I'm pursuing a re-evaluation for her. I'm glad your re-evaluation went better. That gives me hope.



ComfortablyQuiet
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01 Mar 2022, 3:13 pm

crystalline71 wrote:
I felt the same about lockdown and that's one thing that led me to question my autistic traits again. My husband and I were fortunate, I realize, not to struggle the way many people did but for me lockdown was heaven. I prefer most covid protocols too. I don't mind masking in public places and much prefer people around me wearing them during cold and flu season. I loved when crowd sizes were limited and when people had to keep their distance. I was totally fine staying in--and when we had to go out, it was so much less overwhelming…for awhile. I'm not necessarily proud of it but it's just true that I didn't miss anyone or any social activity at all for well over a year… and even now when most people I know have gone back to normal, I question how much 'normal' I want to get back to.


This is completely and entirely how I feel. The freedom and ability to work from home was a complete joy, didn't mind having to queue to go to the supermarket (because it was so much emptier inside for it!), people mostly keeping their distance and not boshing into you, or breathing on you. Masks mean I don't have to worry about my facial gestures, and y'know, protection from germs. I am a complete homebody, and the lockdowns properly gave me an excuse to embrace that to its fullest.

Also, the thing about not missing people? Completely get! In fact, I read somewhere else (and you'll have to forgive my sieve of a brain as I can't remember where), but apparently it is a thing for autistic people to not miss or maybe forget about people when they are not immediately in their lives... Which is definitely something I have experienced my entire life.

I'm definitely not rushing into socialising, and my partner and I are very happy to do things as and when we want as opposed to anyone else or the world.


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MistySkye
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02 Mar 2022, 8:26 pm

So many things!! !
I don't want to get myself into too much trouble but please don't think that because someone has a phD or MD that they know everything. Even the GPs specialize. It's surprising sometimes, how little they know when you come well armed with information.
So to directly respond to your original post, I can't imagine you're an aspergers imposter if your Modus Operandi is color coded symptom diagnostics charts. Just sayin', if it walks like a duck and talks like a duck, it's probably a duck.
(I can't believe I made it through that with no autocorrects :lol: ) and to make that sound less NT idiom, it sounds like you may be ASD, friend.
Your post sounds so familiar, to me, and to my dismay/ delight, to others as well.
It's crazy that the American healthcare system gaslights us into thinking that we shouldn't be evaluating our own symptoms. If we didn't, how would we decide we needed to see a doctor? Don't we go to a doctor knowing that something's not right? Often we know what it is! Why is this different than catching the flu? Or having menstrual issues, or any other physical thing?
Because they control it, and well, if given the opportunity, humans will screw anything up. Cue the American healthcare system.

I've been on the journey for diagnosis since summer. (For myself, and kids) Each time, I end up with a counselor, not qualified to diagnose. They all agree, I'm ASD.... but, my assessment referrals are denied as "not medically relevant". (Please insert your choice of curse words here)
I KNOW I have Asperger's. You know how I know? I took the assessment multiple times and got the same result.I even made a list of WHY I answered each question the way I did. I've spent hours researching. I've cried BUCKETS of tears over the last 6 months watching Tony Attwood lectures on YouTube. I have internalized my existence for 42 years. I've journaled. I've studied the other humans. And I've concluded it is statistically unlikely that I'm one of them. I just *know*.
Am I still gonna get that diagnosis? Yeah! I am. I'm going to keep pestering them with all my questions about my life and existence until they validate it like parking in a big city.
I'm done playing NT games by NT rules. I exist, you exist, and that's important. Now I want to exist in peace by my rules, with my consent. Now that I've had the dis/ pleasure of reliving the entirety of my life through this new lens, I'm not going to just say, " yeah, ok, everyone as they were. " I can't. I shouldn't have to. I wish I could be ok with my self diagnosis, but I've spent my existence needing to be taken seriously, It's a burden I don't wish on anyone. But seriously, I had a bad experience with a previous, unrelated diagnosis. I came with white papers. I was not wel received....
If you bring research to a doctor's appointment, especially your "establishing care" appointment, you might be autistic ;)



SharonB
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03 Mar 2022, 9:23 pm

MistySkye wrote:
If you bring research to a doctor's appointment, especially your "establishing care" appointment, you might be autistic ;)

LOL. Oops, I did that last month. It didn't go well. I'll find a different dr. What a chore.



mutalune
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02 Mar 2023, 10:17 am

I’m super late to responding - shortly after I posted my original response, my aunt passed away… the next day an uncle passed away… and a few days later, my grandma passed away. I had a rough couple of months last year, and didn’t go in for my evaluation until July-August.

I ended up getting evaluated for ADHD first and held off on the autism assessment because I wanted to see if I trusted the evaluator tbh. The ADHD assessment was covered by insurance while the autism one wasn’t, so I figured “well let’s do the freebie, see if I feel seen/heard when talking to her, and if it goes well regardless of if I get a diagnosis, I’ll schedule the ASD one.”

Pretty much it was a long test where I can kinda tell she made her mind up within 5 min about me. She wasn’t talking to me like a patient but more like a kid being silly and she was humoring me, and the end result was “you meet all of the criteria for adhd but those results could be due to your overwhelming depression and anxiety so we’re not giving you the diagnosis” which was a little baffling tbh. (I did find it interesting that on the IQ test part of it, I was pretty much above average for everything EXCEPT mental flexibility. I got way way below average on that, which is p much saying “your brain is stubborn and rigid” and to me sounded like it’s a point in the ASD column, but what do I know lol)

I ultimately ended up deciding not to get evaluated for autism at that time, figured the diagnostic process would always be there if I wanted to give it a shot in the future and I could research for an evaluator who would be used to diagnosing adults and not just children. I’ve been working through my grief + working on getting comfortable with being self-diagnosed and getting over my imposter syndrome, because I think my intuition is right and I think my judgement is right. ESPECIALLY after everyone’s support, kind words, and similar feelings on this matter. (Thank you so much for your responses, everyone!)

So, just in case anyone on here happened to be curious about this - I’m going to learn how to trust myself and my judgement, I’m going to keep using what works best for me (noise cancelling headphones and earplugs have been LIFE CHANGERS, holy s**t), and I’m going to be kinder to myself and tell imposter syndrome to shove it :D



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02 Mar 2023, 11:51 pm

Chloé Hayden - Australian Actress and Advocate wrote:
Folks have such an idea of what they assume autism is and refuse to simply accept anybody that does not meet this very, very tiny and really, very stigmatised thought of what they assume it is.

As if that is not unhealthy sufficient, this then leaves many individuals with imposter syndrome, feeling like they don’t seem to be ‘disabled sufficient’ and like they do not have the fitting to entry the assist that they want.


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Lizzie60
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06 Mar 2023, 7:23 am

Diagnosed 1 year ago at the ripe old age of 62 .

Initially I doubted the diagnosis after years of "masking " but I'm now discovering who I really am and its liberating.

No regrets .


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ASPartOfMe
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06 Mar 2023, 10:10 am

Lizzie60 wrote:
Diagnosed 1 year ago at the ripe old age of 62 .

Initially I doubted the diagnosis after years of "masking " but I'm now discovering who I really am and its liberating.

No regrets .

Welcome to Wrong Planet. Congratulations on being liberated.


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09 Mar 2023, 11:26 am

The lack of understanding of autism across all services is dumbfounding - The Scottsmen
Chrleen Morton, Chairperson of National Autistic Society Dundee Branch

Quote:

My story doesn’t start with a three-year-old boy who doesn’t speak. My story starts many years ago with a four-year-old girl who would only speak to her family. My amazing mum knew something was wrong and I was sent to a child psychologist. I can remember that appointment to this day, I played in the sand pit as the doctor spoke with my mum, telling her “this child is just shy, make her play and join in more, force her to socialise”.

I knew even back then I was different. I struggled to communicate, struggled with food, noise, even chewing holes in my bedsheets and clothes. “That’s just Charleen” was often said about my little ‘quirks’. This went on for many years and I learned how to cope, how to mask. I have lived a life copying, trying not to stand out, trying to be the same as everyone else, trying to be anyone but me.

My eldest daughter Megan had lots of behavioural “issues”. She punched, kicked, bit everything and everyone, and was very defiant and aggressive. I believed I was a useless mother, that I couldn’t cope, that I had failed. Age seven I sought help from our GP, and we were seen at CAMHS. Five years later and diagnoses of PTSD, IBS and depression were all thrown out and at long last, we got an autism diagnosis. Due to my lack of understanding about autism I questioned this, surely it was more than that? My child would fly into the most violent rage in a few seconds, would put her foot through a glass door, would refuse to go to school, even spending a full day hidden in the boot of my car. However, I came to understand that this is in fact everything to do with my girl being autistic. Nothing was going to change this behaviour except understanding. From me, from Megan and yes, from you.

Next it was Shannon, who spoke a few words. Then suddenly, at the age of thirteen months, nothing. She fell into a silent world.

I asked for help. “She will come on in her own time”, they said.

Eventually aged two we saw a speech therapist, their diagnosis? Delayed speech. Autism was never mentioned. I knew it was more than just delayed speech, but no-one would help. She started to speak at age seven but only to very close family. Eventually at age eleven, ten years after I raised concerns about my daughter, she was seen at CAMHS, and within two visits she had her autism diagnosis. I came to realise this diagnosis, autism, was so very different in both my girls. The more I understood about them, the more I understood myself.

Finally, we have Demi-Leigh. I knew, I just knew. I can’t explain why but I did. Six weeks into nursery the teacher called me to the side.

“You’re going to tell me she is autistic“, I said.

“No,“ she replied, “but I am going to refer her to a paediatrician”.

“It’s learned behaviour”, said the paediatrician.

I was told to come back when she was seven if I still had concerns. Four years and two CAMHS appointments later and my youngest daughter had her autism diagnosis.

During all this time my understanding grew further. I approached my GP, who told me I can’t be autistic, as I can drive a car and I work! I was then sent to the mental health team for depression and anxiety when I finally got my autism diagnosis, 38 years after my first visit to the doctor.

Four females, 38 years and nothing has changed. I support other parents during the autism diagnosis process now, and it remains the same. “She is fine at school”, “she can play with friends”. The lack of understanding across all services from schools to CAMHS is dumbfounding


Morals of the story:
1. The fears discussed above are justified.

2. Persistence pays off. All four did eventually get diagnosed.

3. If possible avoid generalists. Go straight to a clinician that both specializes in autism and is familiar with how autism presents in females. They are often difficult to find. Don’t be afraid to ask for help in this forum.


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It is Autism Acceptance Month

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


kpopmultistan20
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05 Mar 2024, 7:28 pm

Hi, I'm new WP user, I created my account after seeing lots of relatable stories on here :)
I can relate to an oddly large amount of people on this forum, but probably substantially younger than most (for privacy reasons not disclosing exact age but will say I'm a teen)
I've been researching (possibly casually but possibly obsessively, I can't tell) and slightly suspecting that I'm autistic for the past ~1/2 year, and every free test I can find online says it's true, but I might not be "autistic enough" (or something like that that some NTs probably will say) and haven't found the guts to tell anyone, so I decided to post something here. I've had pretty excellent grades in my whole educational career, shy girl with small social life and passion for dance/music. Any possible/random advice welcome because I don't know what I should identify as and the imposter syndrome is always annoying :P



eviifreon
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01 Apr 2024, 11:46 pm

I hope you have gotten your assessment done by the time of my writing. Just know that you aren’t the only one having doubts or feeling like “faking”. When I first raised the issue of an assessment, I was dismissed by my usual doctors because I was “not intellectually challenged” and that I “looked to be well off”. I had then abandoned the idea, because maybe I am “not autistic”. But a friend of mine who is an AuDHD, asked me to get a 2nd opinion from a different doctor. And lo, and behold, I was diagnosed (I am at 31years old now). My first diagnosis was bipolar but the medication made me feel even more detached and “zombified” more than I already am feeling “alienated”. I had change medication and still nothing works for me. Only after my new diagnosis, I was taken off anti-psychotics (for bipolar), do I feel more “alive” in a sense. It was an “Aha” moment for me when I was found to be autistic. Although I do suffer from depression with anxiety distress, everything from childhood until adulthood finally made sense. I am still struggling with accepting my new diagnosis because of self-stigma (I don’t have the stereotypical traits of medical models on autism) but I am learning every day through books and forums and influencers that “not one size fits all. We are all different personalities but we are still all autistic.” Cheers to you!


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“No one size fits all. We are all our own personalities, and yet we are also autistic.”

Self-stigma is real and exists because of how we have been conditioned to believe that everyone has the capabilities like NTs.

Healing is a journey, not a straightforward process