I don't think I will be taken seriously if I seek diagnosis

Page 1 of 1 [ 16 posts ] 

lillielle
Emu Egg
Emu Egg

Joined: 25 Jun 2021
Age: 35
Posts: 2
Location: England

25 Jun 2021, 5:54 pm

Hi,

I am 32. I am 90% sure I am on the spectrum, as autism seems to answer pretty much all the questions/difficulties throughout my life. But, I am a woman, and I have been a fairly successful mental health nurse for a number of years. Through maximum effort, I have been able to use my communication abilities successfully as a mental health practitioner. The emotional toil that this has taken on me over the years has been extreme, and I have lost the man of my dreams, and most of my passions, and my energy for life. I am in the re-building stage.... but do I need a diagnosis?

I think if I go to a dr they will completely dismiss autism. I mentioned it to my mum, and she laughed. I mentioned it to my best friend (a mental health nurse who deals with children with autism frequently), and she laughed. I engaged with a therapist last year, and when I mentioned autism, he dismissed it. People who know me feel that I could not possibly have autism.

I score 32 on the AQ50 - I found out when I decided to take the test myself after testing a patient who scored 26.

I resonate with so much of the criteria, and I feel that it's a good fit. But No-one who "knows me well" feels the same.

My question is two-fold. Is it worth pursuing a diagnosis? I am fairly comfortable that I fit in the autistic community, so do I need a label to confirm this? What benefit will this have on my life? And secondly, will anyone take me seriously. I can't take it if my GP turns round and says - no, you cannot have an assessment.

Any opinion appreciated, as this is important to me, but I simply cannot find the right answer anywhere!



SharonB
Veteran
Veteran

User avatar

Joined: 14 Jul 2019
Gender: Female
Posts: 2,733

27 Jun 2021, 4:01 pm

I am an extroverted, empathetic, "successful" (by NT norms) Autistic woman who has a spouse to support me. I scored 26 on the AQ initially and now score 32-34 regularly since I took off my own blinders. During a workplace crisis, I sought an evaluator with experience with (1) adult (2) women (3) on the Spectrum and thankfully found one. I was diagnosed and am glad for it. My ASD-like daughter is not in crisis yet and her evaluator did not diagnose her with ASD (instead gave six different diagnoses: expressive language disorder, sensory processing disorders, etc.). I can do a lot for her since I am self-aware, but am concerned about middle school as it exceeds my "comfort" level. My ASD-like BFF is not in crisis and has not sought diagnosis. She keeps her life "small" so it is manageable. I have to wonder that if I hadn't been in crisis would my ASD would not have "shown" on the outside (to the untrained eye)? My evaluator claimed he would have identified it. Like you the crisis is generally very much on the inside. My evaluator acknowledged that --- he said in some areas he suspects my Autism is "moderate" but I cover well, e.g. my mom got me professional support early in life and I continue to use resources and obtain support. However, I often do so with shame - now that I have my diagnosis, I am doing so with more self-assurance.

I will wait a bit and then take my daughter back for reevaluation - most likely with a different evaluator. My BFF continues to consider whether a diagnosis would be worthwhile for her (if her ASD was "apparent" enough). I think there should a "stress test" for ASD --- hold this, listen to this, do this --- no, do that --- and see what happens. An Autistic woman in a clinical environment who is self-taught in the ways of NT doesn't jump out as ASD. Plus many of us have fooled ourselves for so long...

Welcome! I wish you well as you find your way with your new considerations!



Unseen Unheard
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 30 Jun 2021
Age: 58
Gender: Female
Posts: 26
Location: Victoria Australia

03 Jul 2021, 9:33 pm

I'm a 55 year old female. I have only recently discovered that I am most likely on the spectrum. I have also become so adept at masking that no one would believe that I am autistic.
I don't think I will be seeking an offical diagnosis, even though that would be incredibly validating. But here in Australia it is incredibly expensive and difficult to get as an adult.
I have no even bothered (as yet) to discuss this with my immediate family for fear that they would also just laugh at me. I do remember about 5 years when a friend had asked me if I had Aspergers and when I told my family they thought it was ridiculous. And yet it explains my entire life. All the idiosyncrasies, the crazy weird and restrictive way I still eat to this day. My HSP, and just so many aspects of my life.
At this point in my life I have given up on having friends. It's too much effort and it usually doesn't end well. So I guess I'm just on my own.
But I don't think we need external validation through diagnosis. Those who don't understand, still won't understand us, even if we have it. I think the main thing is that we accept and understand ourselves.


_________________
I AM that I AM. That which I have always been. That which I will always Be.


ArtsyFarsty
Blue Jay
Blue Jay

Joined: 17 Mar 2021
Age: 46
Gender: Female
Posts: 80

03 Jul 2021, 9:34 pm

Hello,

I was very much in the same place just a few months ago. I’ll be honest, part of me was so attached to a prospective diagnosis, that I was worried how I would handle it if I was wrong.

I’m not sure how it works on your side of the pond (like if you can pick your diagnostician), but I did a lot of reading up on the qualifications of whom would be conducting my assessment. By then, I knew the person had rather intimidating qualifications, so at very least I knew that my diagnosis, whatever it may be, would be accurate. Apparently he diagnosed me within the first 20 minutes, but didn’t say so until 4 hours later, lol.

That said, only you can tell if it is worth pursuing. For me it was very liberating and helped me make sense of so many things, and it also helped with my marriage to my NT spouse. Even if you don’t need any accommodations, you may find that it helps you reframe how you see yourself.



starkid
Veteran
Veteran

User avatar

Joined: 9 Feb 2012
Gender: Female
Posts: 5,812
Location: California Bay Area

07 Jul 2021, 3:18 am

lillielle wrote:
My question is two-fold. Is it worth pursuing a diagnosis? I am fairly comfortable that I fit in the autistic community, so do I need a label to confirm this? What benefit will this have on my life? And secondly, will anyone take me seriously. I can't take it if my GP turns round and says - no, you cannot have an assessment.

If a diagnosis is nothing but a "label" to you, then why bother? As a mental health nurse, you must know what evaluations and diagnoses are for, and therefore you ought to know whether you need the sorts of things they are for.



IsabellaLinton
Veteran
Veteran

User avatar

Joined: 1 Nov 2017
Gender: Female
Posts: 67,988
Location: Chez Quis

09 Jul 2021, 11:44 am

I did my assessment privately and didn’t need a GP referral. She would have given me one if I asked, but it was one added step I didn’t want to bother with. Also with referrals (non-private testing) adults often waited up to a year. I only waited a couple of months privately and by all accounts my report is light years more thorough than other people who used referrals where I live.

I’m not the one to ask about masking though. I don’t mask and never really could. It was always quite clear that I was autistic since childhood. The only reason I wasn’t diagnosed as a child is because I grew up in the 70s and autism wasn’t understood then for boys or girls without intellectual or physical disabilities. I was sent to speech therapy and counselling services though. My teachers knew I needed extra support and wrote frequent comments about my issues, including sensory.

It sounds like you want to be assessed and you are quite sure you are on the spectrum but then you also say no one would believe you, even your doctor. If you are a mental health nurse do you have affiliates or colleagues who could arrange testing?



reginaterrae
Veteran
Veteran

User avatar

Joined: 19 May 2009
Age: 56
Gender: Female
Posts: 11,220
Location: Maryland, USA

11 Aug 2021, 5:47 pm

I'm kind of in the same place right now. I'm 54, and I've actually suspected ASD for a long, long time, and I've been told before that I'm wrong about it. But that was 12 years ago ... I want to try again to get diagnosed, I'm thinking that maybe there is more understanding now about how ASD shows up in women -- but it would be so demoralizing to get invalidated again. Because even if the cutting edge is more aware, how knowledgeable is the average practicing clinician? My sister works in special ed, and two of our nephews have ASD (one high-functioning, the other more seriously impaired), and she totally dismisses my self-diagnosis. But you know what? I'm at the point where I just know myself, and I haven't changed, but I've seen the state of the science change. So if I don't get a diagnosis, at this point I'm pretty comfortable saying it's the science that's wrong, that hasn't caught up with the neurodiverse reality. Still, that sounds confident, but I'm still not sure I want to put myself out there to get clinically invalidated again. So ... good luck!



cbd
Sea Gull
Sea Gull

Joined: 12 Apr 2021
Gender: Male
Posts: 246

12 Aug 2021, 1:32 pm

ive just been diagnosed with ASD . like yourself , i had no doubt in my mind . and scored 32 on one of the tests .

it's difficult to get funding with the NHS for diagnosis . i whent private , and it can cost upto £1000 + .

it was all done over the phone via video call + questionaires .

Feel free to DM 8)



lillielle
Emu Egg
Emu Egg

Joined: 25 Jun 2021
Age: 35
Posts: 2
Location: England

04 Oct 2021, 5:44 pm

Hi, I just wanted to thank everyone for their responses. It’s really good to know that there are other people who feel the same way. And it’s really helpful to hear different opinions on whether a diagnosis is useful.
Reading your responses have given me a lot of comfort, so thank you all :) x



Shellbelle
Veteran
Veteran

Joined: 12 Sep 2021
Gender: Female
Posts: 675

07 Oct 2021, 11:35 pm

Hi Lillielle,
I was just recently diagnosed in August. It took a while to find a specialist to do the intake, but I had suspicipns for 2 years prior.

My friends that I told, and I have only told 2, didn't believe me, and one has chosen not to be a friend any more as a result. The other is in denial still. I guess I mask well, although by now it has taken a serious toll on my well being and I am less able or inclined to do it with age.
I really think we know ourselves well, and if this feels like a match to you, no matter if you pursue a full diagnosis or not, it is likely you are.
For me, I just had this strong gut feeling I was different all my life, I just didn't have a name for what my experiences were. After reading a book by an autistic author, featuring fictional autistic protagonists, (who felt super normal to me) and having an autistic student who I just bonded with and got right away, when my NT colleauges were stumped, I hopped down the autism bunny trail and here I am.

My diagnosis helps me feel less imposter syndrome and less inclined to question myself. Even with a list as long as my arm of traits and online sceeners etc etc I was still questioning if I was autistic, so for me it helped solidify this new phase of accepting who I am with a clearer idea of identity. This has been reassuring and a huge relief. I thought I was very, very broken before and it was affecting my self esteem deeply. Now, I know I am a not a broken, defective NT person, but a very normal autistic person.

Welcome to WP, and I sincerely hope you find what is best for you.



Itendswithmexx
Velociraptor
Velociraptor

Joined: 15 Oct 2021
Gender: Female
Posts: 455
Location: Australia

15 Oct 2021, 11:14 pm

Why wouldn’t you want to know? Not knowing would be harder than not knowing. I’ve always known something’s not quite right with me but just couldn’t put my finger on it. Just chalked it up to being “depressed” as everyone else told me i was. I blamed everything on being depressed, I kept thinking oh I’ll take this pill and then I’ll be happy, outgoing and smart.” Never happened. But if you have kids and refuse and deny them to get tested cause you’re concerned about how that would reflect on you then that’s extremely selfish and damaging. A lot of parents refuse to let their children get tested for dyslexia and all the rest because then they think they have it. That they don’t deserve their accomplishments. But everyone gets it in different severities. And people can have more than one thing at a time.
People always want me to have bipolar because then that’s treatable and cureable. But I dont. I’ve been tested for it three times by private shrinks. But people want that. They don’t want to think oh well maybe if something bad happens then that means she’s got bipolar. When they just keep diagnosing my reactions to normal awful events. Desperate to get me on the mental health act so they can get easy access to use and abuse me through it. Cause they love to shove Austics and dementia patients on antipsychotics cause it’s basically a massive horse tranq. Easy to control so they can get rights to kill you or access to money. People are loverly. At least your iq is good cause you gots a good job! So if you have it you got the high functioning so go you!



Itendswithmexx
Velociraptor
Velociraptor

Joined: 15 Oct 2021
Gender: Female
Posts: 455
Location: Australia

17 Oct 2021, 6:50 am

It’s amazing that they don’t screen people for this when they interview you for your job. But I assume you landed your position through placement? So if you study you’re guaranteed a tenure job? Do they screen you for mental illness too? Cause I’ve met some mental health nurses who are obese, and a psychologist who smokes.



Itendswithmexx
Velociraptor
Velociraptor

Joined: 15 Oct 2021
Gender: Female
Posts: 455
Location: Australia

17 Oct 2021, 6:51 am

Why would they dismiss it? They can’t tel by looking at you nor can they tell by seeing you for 10Minutes. Get another doctor cause they are already not taking you seriously.



Itendswithmexx
Velociraptor
Velociraptor

Joined: 15 Oct 2021
Gender: Female
Posts: 455
Location: Australia

17 Oct 2021, 6:52 am

It takes two seconds to write out a referral for educational psychologist or neuropsychologist. GPs are not trained to rule it out.

I’m assuming they may have commission based upon referrals?



Brown Mouse
Emu Egg
Emu Egg

Joined: 28 Oct 2021
Gender: Female
Posts: 1
Location: U.K

28 Oct 2021, 4:35 am

Hiya, I just wanted to let you know how I am approaching trying to get an NHS referral. I am also a MHP and felt very anxious about approaching my GP, I thought I would become too emotionally overwhelmed if I tried to explain things I’ve the phone so I wrote it all down. I included a copy of the NICE criteria (identification and assessment) and in addition a list of traits common in women written by Tania Marshall who is a therapist who specializes in diagnosing women who is also autistic herself. I printed out the one whole thing and highlighted those that I thought fitted me (many!). Here is the link which seems to have updated today (bizarre coincidence!?)

(Sorry it won’t let me post link in case it’s spam?! But if you google Tanya Marshall autistic traits in women you might find it)

This is lengthy but well worth reading, I think a lot of it will resonate with you. Anyhow it was a lot of paper that I sent and he wrote back asking me to fill out some more paperwork which I am still in the process of doing. Hope this helps!



Itendswithmexx
Velociraptor
Velociraptor

Joined: 15 Oct 2021
Gender: Female
Posts: 455
Location: Australia

28 Oct 2021, 6:26 am

lillielle wrote:
Hi,

I am 32. I am 90% sure I am on the spectrum, as autism seems to answer pretty much all the questions/difficulties throughout my life. But, I am a woman, and I have been a fairly successful mental health nurse for a number of years. Through maximum effort, I have been able to use my communication abilities successfully as a mental health practitioner. The emotional toil that this has taken on me over the years has been extreme, and I have lost the man of my dreams, and most of my passions, and my energy for life. I am in the re-building stage.... but do I need a diagnosis?

I think if I go to a dr they will completely dismiss autism. I mentioned it to my mum, and she laughed. I mentioned it to my best friend (a mental health nurse who deals with children with autism frequently), and she laughed. I engaged with a therapist last year, and when I mentioned autism, he dismissed it. People who know me feel that I could not possibly have autism.

I score 32 on the AQ50 - I found out when I decided to take the test myself after testing a patient who scored 26.

I resonate with so much of the criteria, and I feel that it's a good fit. But No-one who "knows me well" feels the same.

My question is two-fold. Is it worth pursuing a diagnosis? I am fairly comfortable that I fit in the autistic community, so do I need a label to confirm this? What benefit will this have on my life? And secondly, will anyone take me seriously. I can't take it if my GP turns round and says - no, you cannot have an assessment.

Any opinion appreciated, as this is important to me, but I simply cannot find the right answer anywhere!




Depends how you ask/ I said at age 19- “I need a brain scan”. Cause I knew there was a reason why i struggling with school. Doctor laughed at me and gave me a prescription for strattera. I knew there was something wrong with my brain. But didn’t find out the names till I was 22. After doing my own research and having seen one neuroscientists for a iq test, an educational psychologist, audiologist, eye doctor,speech pathologist, career counsellors,gone on Ritalin. So yah I’m not a registered nurse,I’m a high school drop out who probably couldn’t even pass primary school even on a good day where I’m not affected by chronic fatigue so yah They’ll take you seriously - if you go to enough doctors and ask the right questions and research it yah someone will eventually take you seriously.