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Muia
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13 Apr 2019, 12:51 pm

I’ve been speaking to my counsellor and I’ve said I’m the happiest I’ve been about myself now I suspect I’m on the spectrum but I think a diagnosis may be the final thing to seal the deal so to speak. I finally understand myself and where I fit. It’s caused me depressed episode and I’m still trying not to mask when getting to know people. Does anyone have any help regards getting a diagnosis and being female?


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magz
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13 Apr 2019, 4:09 pm

Not me - I'm not officially diagnosed.
I milled it in my head for quite a moment and I decided all I need it self-understanding.
I doubt official diagnoses because I was previously very officially misdiagnosed with schizophrenia. DSM is still mentally in middle ages, they know very little of mechanisms and still focus on external symptoms. But external symptoms may be very misleading.
So, despite initial doubt, I saved the money and effort.
Maybe one day they develop some lab-like autism test - I would love to check myself then.

But if you expect more than self understanding, say, some services, then it's probably worth the effort. But diagnosing autism in adult female is often tricky. Find out about adult autism specialists in your location.


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fez
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13 Apr 2019, 6:23 pm

magz wrote:
Not me - I'm not officially diagnosed.
I milled it in my head for quite a moment and I decided all I need it self-understanding.
I doubt official diagnoses because I was previously very officially misdiagnosed with schizophrenia. DSM is still mentally in middle ages, they know very little of mechanisms and still focus on external symptoms. But external symptoms may be very misleading.
So, despite initial doubt, I saved the money and effort.
Maybe one day they develop some lab-like autism test - I would love to check myself then.

But if you expect more than self understanding, say, some services, then it's probably worth the effort. But diagnosing autism in adult female is often tricky. Find out about adult autism specialists in your location.


I feel pretty much, word for word, exactly the same as magz. My daughter has an official diagnosis though from a centre that specialises in female diagnosis so I saw the diagnostic process, first hand, with her.

I see you are in the uk, if you want the name of the centre please pm me. They do a full diagnosis in a day so there isn’t the stress of waiting around or seeing different people. It is a multi disciplinary diagnosis. We paid but I think you can get an nhs referral.


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testingwithfire
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16 Apr 2019, 12:34 pm

I just had an assessment with Tania Marshall, who's a clinical and research psychologist in Australia. She specializes in non-men on the spectrum. We did the assessment via Skype video chat; I was very pleased with the breadth of Ms. Marshall's focus and her use of both quantitative and qualitative assessment techniques. She's easy to talk to into the bargain and not once did I feel judged or "weird."

I came out "twice exceptional" (gifted/talented AND Aspie). I'd suspected the Aspie part for a long time and I was IDed as gifted in childhood.

Now, I'm 53. Why bother getting assessed? Primarily to take myself off the hook with respect to long-standing and profound social and relational deficits. Already I can feel myself saying in certain situations, "remember that you're on the spectrum" and it's helping me not hate myself so much.

I'm happy to answer any other questions ... just shoot me a PM.


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kayell
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16 Apr 2019, 3:04 pm

I'm not going for an official diagnosis for several reasons. I'm 61, almost 62, taking early social security and moving to an inexpensive country, so there is no financial advantage. In fact, the whole process would be expensive, drawn out and cost me quite a bit. For someone else, the finances and access to services might break down the other direction.

Since taking some of the online tests and reading about ASD seems to fit me so completely, explains a lot of my life, and gives me actions to take that will improve my life, I don't need a professional to verify things. I'd rather get advice from people living in the trenches.

I've had a lot of bad experiences with mental health professionals of various sorts, and some of them have missed giant waving flags. At least 2/3 of those I've see have been either useless or actively harmful. Could have been luck of the draw, but I won't ever willingly put my well being in their hands again.

YMMV


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Oakling
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17 Apr 2019, 5:33 pm

I am currently almost 9 months into a 12 month waiting list for adult Aspergers diagnosis. I spent a few years reading up about it, then initially mentioned it for the first time to an NHS CBT therapist I was seeing for anxiety. She did not give an indication whether or not she thought I should pursue diagnosis or not. A few months later I put together a stack of documents (copies of my AQ10, AQ50 and RAADS-R tests, a list of traits/behaviours/etc that may point to ASD, a page of relevant family history and a page of why I want the diagnosis.) I took these to the GP I thought was most helpful at my local practice and though I was too nervous to talk much, I was able to use a combination of my typed out pages and answering of his questions to put my case across. He didn’t know the correct way to refer an adult, but was grateful for all the info I’d taken and also the AQ10 which is the test NICE recommend GPs to use to screen for referral. He believed I was on the spectrum, but didn’t know if the local adult aspergers unit would think I was severe enough for an assessment. But he did the referral for me. I was then invited to a 90 minute long screening appointment with an assistant psychologist, who took loads of details and filled in more questionnaires with me. Then I had a couple of weeks wait to see if they would accept me for full assessment. Which they did. Now I’m just waiting and waiting and..... hopefully if the 12 months was accurate, I should see someone in the summer. It takes a few weeks I believe of several appointments.

My daughter is also being assessed, her next stage is in June.

I am doing it for greater self knowledge, ability to understand my family better and myself in relation to them, and to be able to better focus my abilities/difficulties to live a life more to my own potential.

Hope some of this may be helpful!



ApricitiousRory
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18 Apr 2019, 5:07 pm

testingwithfire wrote:
I just had an assessment with Tania Marshall, who's a clinical and research psychologist in Australia. She specializes in non-men on the spectrum. We did the assessment via Skype video chat; I was very pleased with the breadth of Ms. Marshall's focus and her use of both quantitative and qualitative assessment techniques. She's easy to talk to into the bargain and not once did I feel judged or "weird."


Thank you for sharing this info. I've been thinking about pursuing assessment/diagnosis for the past couple of months, but the autism specialists where I live are all focused on early childhood. My therapist, who readily admits that autism is not his speciality, has cautioned me about seeking a diagnosis locally given my age (56 in two weeks), how well I've learned to mask over the years, and the lack of local adult autism specialists especially when it comes to women on the spectrum. I do know that whatever I decide, he'll continue to be a great support. Your post gives me some hope that I might be able to access knowledgeable specialists from a distance.

Why am I considering assessment? I'd like to try going back to college and it's clear that I likely will need some accommodations. Also, I'd like to gain a better understanding about where my deficits and strengths are. Lately it seems like as I get older the ways I've managed myself for decades are breaking down. Having more meltdowns, needing more sensory management, etc.

There is one place I can go locally for assessment and they would be willing to assess/diagnose, but I don't trust their level of knowledge & experience with that process, especially when it comes to women (let alone transgender women like me).


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Last edited by ApricitiousRory on 18 Apr 2019, 8:56 pm, edited 2 times in total.

breaks0
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18 Apr 2019, 5:30 pm

Fascinating thread. Thanks all for sharing, it's educational for me at least.

Re: Australian resources on ASD, there's a book I read part of a couple years ago (I need to finish it) called "Shining a Light on the Autism Spectrum" that's written by 5 women specialists in the field (some of them have PhDs) that basically draws on a survey of (I think just Aussie) adults on the spectrum. It does not focus only on women, but it does look at physical/mental health, education, social/community connections, employment, independence and daily living and experiences and aspirations. I found it somewhat helpful, if anyone's interested.

Oakling: Why is the wait for diagnosis in the UK so long? It sounds frightfully complicated. I know everything's different b/c I'm male, but my diagnosis was done in a few hours and fortunately b/c I have Medicaid (the public sector health insurance for the poor in the US) it was free and the examiner told me I was on the spectrum right after we finished.

Good luck everyone!



Gulhalla
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04 Jun 2019, 11:22 am

I am a woman who is very likely on the spectrum and can very much relate to Kayell's experiences and reasons for not pursuing a diagnosis, though I am younger (in my 40's). I am lucky enough to have an old NT childhood friend I grew up with, one who is very honest and who also put her own thought and research into the question of potential Asperger's. She later agreed with my conclusion, and our friendship has grown in positive ways because of the new understandings and conversations. It has been a deeply validating experience.

I have not posted here in years for various reasons, one very big one being that I am not so sure that a self-diagnosed person would be "welcomed" even considering the extreme societal prejudices against the idea of females being on the spectrum, the costs and logistics involved, etc. I just saw a recent post elsewhere on these forums by a senior writer (male) saying that the self-diagnosed should not identify as having Asperger's, and I do tend to take those things literally (not that I internally agree with the statement, but I will if possible avoid places or situations where I am given instructions that I feel I cannot abide by). The information here about Tania Marshall is very interesting. I am glad that you shared it and will remember her if I do ever wish to pursue a formal diagnosis.

Thank you for "listening." Best wishes all.



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04 Jun 2019, 11:43 am

breaks0 wrote:

Oakling: Why is the wait for diagnosis in the UK so long? It sounds frightfully complicated. I know everything's different b/c I'm male, but my diagnosis was done in a few hours and fortunately b/c I have Medicaid (the public sector health insurance for the poor in the US) it was free and the examiner told me I was on the spectrum right after we finished.

Good luck everyone!


Because it is "free" in the UK there aren't enough doctors in the system to meet the demand. Instead, doctors are allowed to work outside the system and make more money serving those wealthy or desperate enough for something they could get for free, if they were willing to wait.



jpp
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21 Jun 2019, 5:07 pm

hi all from british columbia canada,

I'm turning 50 this summer (yippee?).
One of my twin sons (now 16) was Dx'd at age 9. Parenting and supporting him and learning about ASD was like a light going on for myself. The more I learned, the more I identified with ASD.
Finally thinking about seeking an assessment for myself. Thank you to all of you who are sharing your thoughts and feelings about the pros and cons. It's invaluable to me to hear your thoughts.
After a lifetime of camouflaging and pushing myself to function in my private and professional life to, and living with anxiety, confusion, and depression, I think a diagnosis would help me understand and make sense of a lot - like many of you have shared - and help me with my self acceptance and self care and realistic boundaries moving forward.
Anyone aware of a practitioner that could assist me in B.C., Western Canada, or Canada? I'm willing to travel if need me. If I'm going through the stress and expense of assessment I want to ensure the assessor is skilled and experienced with adult females.
Warmest regards,
jody



swordrat32
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27 Jun 2019, 8:10 pm

I saw Isabelle Hénault in Montreal, http://www.clinique-autisme-asperger-mtl.ca/team_eng/. She's a psychologist (and sexologist as well, which is interesting). She has expertise in women on the spectrum which is why I went to her. Her native language is French. She can communicate fine in English but in retrospect I might not make that choice again as an English speaker.

She was nice and warm in person. Before we met, she had me do a bunch of self-report measures and some writing about myself, and asked for some writing from someone I know well. When we met, she finished with a clinical interview. It's not a "differential" diagnosis in that she's definitely focused on whether it is autism or not.

So overall I had a good experience with her. I'm still having some trouble trusting the diagnosis but I think that's more about my self-doubt than about her.