Diagnosed later in life - female

[Eliza]

(It's been a while since I've been on this site, but it's nice to be back.)

I wanted to know about other people, females, who have had a strong self diagnosis and sought an official diagnosis?

I'm an older woman, self-diagnosed. I tried to get a diagnosis, but the only one provider my Medicaid would pay for asked me if I had any 'savant qualities'. When I told her no, she quickly announced that I did not have HFA. Obviously, she knew nothing about the autism spectrum. So my advice would be to find a provider that specializes and is up to date with autism/Asperger's traits for females since the earlier research focused on boys. They may also be more open to scanning your list of traits. My doctor wouldn't even glance at my list--very bad experience for me. The frustration, anxiety, and hassle this doctor left me feeling ended my need for outside validation. I hope you have much better success.

I'm no expert, but you may indeed have a touch of the savant gene since you were able to progress so well in school and work. Like many others who've already responded to your post, I fall in the middle. I have a high IQ, but I only do well in a couple areas of study. I'm clueless in the other subjects and it's so-o-o frustrating. For example, I love history but only retain a portion of what I study. Science is fascinating, but it may as well be taught in Mandarin--I'm totally clueless. As for work, I've tried, but that never lasts either. Between sensory issues and poor executive and social skills, it's just too exhausting. Friends? What are those??? I only keep friends when I 'act', and honestly I'm tired of not being authentic. My dearest friend is thirty years older than I am, and she is the only person I know who tolerates my eccentricities.

 

[psychgirl95]

Warning: this may be long. I haven't talked about my diagnosis much since I've gotten it. However, I will say that most of what you listed in your post also applies to me. (And to whomever asked about autoimmune diseases, yes, I have one! I'm kind of weird, though; I'm also recovering from a rare endocrine disorder - Cushing's Disease.)

I was officially diagnosed April 28th, 2016 at the age of 20 by a local psychologist that specializes in seeing teens and young adults with ASD. (He's basically the guy to see if you have Asperger's.) I self-diagnosed around age 13 or 14 and previously attempted to get an official diagnosis, but neither my family members nor the clinicians I was seeing (e.g., psychologist and child/adolescent psychiatrist) agreed. In fact, they thought it was impossible (and in the case of my immediate family, they were insulted)!

I also had an evaluation (which included the ADOS) about 8 months before my official diagnosis with a recently graduated psychologist who said I didn't have ASD. At the feedback session it was clear that she knew very little about Asperger's, which is ironic considering she worked with my research mentor (who knows about my diagnosis and seems to understand HFA pretty well) while earning her PhD. ANYWAYS, the hard part was getting my mom to believe me since one clinician had already said no...

Interestingly though, as my depression worsened, I had to begin seeing a therapist and psychiatrist again. Pretty much everyone agreed I had Asperger's, but none of them were specialists and they didn't really want to disagree with the first psychologist I'd recently seen. The psychologist that diagnosed me with ADHD actually said that she knew I had Asperger's from the first time she saw me, and that my behavior during our second meeting only confirmed it more. I told her I'd been given the name of a local ASD specialist by my local autism society and she said if she had a kid with ASD, she'd go to him...so I did. I finally set up an appointment. (I had to wait a couple of months, but it was a much shorter wait compared to my first evaluation.)

Maybe 20-30 minutes into my first meeting with him he'd confirmed what I'd already known for years. He agreed that Asperger's was a better diagnosis for me than Autistic Disorder, but also mentioned (mostly for my mother, as the DSM is one of my special interests and he knew about this because of my mom telling him) that the diagnosis was officially just ASD now. It was a lot for my mom to digest (and she's since written a book about the whole experience of my diagnosis), but I didn't really feel anything at first. Then I felt bad for not feeling joy that what I'd been saying for years was finally verified by a clinician.

At this point my mom doesn't even deny the diagnosis anymore; in fact, she actually tells people - mostly doctors - that I'm autistic. It still feels really weird for her to say that. However, I also doubt my diagnosis. I think I probably always will since I wasn't diagnosed as a young child. I feel like I have to defend my diagnosis, if that makes sense. It's a weird feeling, especially since I see my psychologist every month, and he's been sure of my diagnosis since the day he met me. It's not a topic I think I'm really comfortable talking to him about, though. *shrug*

I don't want to write a complete essay, so I'll end with that. If you want someone to talk to who's been through the assessment process, feel free to PM me! (I don't come on here often though, so you might want to PM me your email address instead of just messaging me.)

 

[JoyChaos]

i am also seeking a diagnosis. i emailed a place to see how i can get started. i'm nervous, anxious, excited, rocky and finger stimming lol. keep us updating!

 

[Sylvia]

Dina - I feel for you - I was privately diagnosed at 57 - with Aspergers then went on to be privately diagnosed with Dyspraxia- I have also Dyslexia plus many physical chronic problems- which when I have researched it seems often all go together with the Aspergers- I have achieved many things in my life but every success gets knocked down for me - I am like a weeble- I get knocked down but get up again- I don't see the point in life but I am still here after numerous attempts not to be so I start again- my next venture is a level 4 Diploma in Therapeutic Counselling- have had my interview- just waiting to hear - I love my 6 cats and a beautiful Golden Retriever and I soldier on - I want to help others to keep going

 

[Jet Weiss]

Welcome!
Good to see a fellow dog lover here, my special interest is dogs as well!

 

[Yucca]

Hi! I am 42. Self diagnosis, followed by an official diagnosis, a few years ago. I am trough many things you all describe. Since I know about Aspergers Syndrome, I understand me and others better. Every single person has, in my opinion, at least a few autistic features. So, knowing about these things makes me much more tolerant. It's about the CONTINUUM, some people are only partially in the autistic spectrum and others are in it but as well show NT features. It's difficult to tetermine with ABSOLUTE certitude where somebody is. Sometimes I think that I am wrongly diagnosed. I identify with being an Aspie, so I am kind of afraid of the thought that I might not DESERVE the diagnosis!

 

[Streetwise]

bet you do im the same as you its 18 months since diagnosis still question every day is it correct
i think for me i hoped there would be a lightbulb moment and as usual no it was more relief that i wasnt have a panic attack
i think the problem is we(h.f.a) which are at this end of the spectrum have spent so long fighting to survive diagnosis seemed like a lot of meaningless sounds
think i was really thinking total relief from everything and then there is not really any support to be a fulfilled person

Hi! I am 42. Self diagnosis, followed by an official diagnosis, a few years ago. I am trough many things you all describe. Since I know about Aspergers Syndrome, I understand me and others better. Every single person has, in my opinion, at least a few autistic features. So, knowing about these things makes me much more tolerant. It's about the CONTINUUM, some people are only partially in the autistic spectrum and others are in it but as well show NT features. It's difficult to tetermine with ABSOLUTE certitude where somebody is. Sometimes I think that I am wrongly diagnosed. I identify with being an Aspie, so I am kind of afraid of the thought that I might not DESERVE the diagnosis!

 

[WereBear]

It's good to know.

I didn't know; despite an kinda successful IT career and a happy marriage and a college degree, I was also quirky and highly intelligent and binged as a stressed out teen and got bullied and made friends when I went to a high school big enough to have an "art crowd" where my funniness and lack of girly were treasured.

My crisis came with menopause, when my brain stopped working. It was so overstressed my hands lost all strength and my usual clumsiness was turned up to eleven and it no longer properly regulated the hormones I had left.

It wasn't until I self-diagnosed and then sought out an expert in women with autism that I realized what was wrong and was able to take steps to get better. Which meant talking my NT partner into two apartments, talking my workplace into job adjustments, realizing my needs for recuperation -- my baffled doctor said my condition was caused by "stress" (and he was right) so I would go out and "have fun" on the weekends -- LOL!

Now, I know what helps me recover is good sleep, lots of solitude, and a Paleo way of eating, with certain nutritional supplements that really help.

I'm out to my friends and certain relatives and one boss at work. I've resumed work on my book about one of my special interests: cats. And I come home at the end of the work day with leftover energy most of the time.

It gets better. It really does. Once you KNOW. And you don't need an official diagnosis. Every single thing I have done to improve my situation came from my own research.

Look at the stats in my sig. It should have been obvious! But when I was born, no one speaking English knew about Asperger's.

 

[WereBear]

The lost girls | Spectrum | Autism Research News

This is ME:

Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex — in a sense, intellectualizing social interactions that would be intuitive for other women.​

This was the conclusion of the expert who diagnosed me; because I stunned her with my social ease, good eye contact, and conversational skills. I am thinking my way through these things; been doing it for so long I am completely unaware of it.

 

[CherieRyde]

Welcome! I was just diagnosed last year. I hadn't even heard about Autism until I was trying to figure out what was going on with my son and knew that ADHD didn't cover it. While we were going through the process of diagnosing him, I had a hard time with the tests because I struggle with a lot of the same things. So they'd ask me a question like "Does he dislike tags in his clothes or the seams in his socks?" My response was "Well yeah. I mean, I do do too. Doesn't everyone?" By the end of it all the doctor said "Ma'am, I'm going to give you a number that I strongly suggest you call. Since you are an adult, I can't diagnose you. But I can say without a doubt after the assessments and my observations that your son has Autism, and that he shares a lot of your traits."
That was my "Ah ha!" moment when it all made sense. My entire life flipped through my head like a View Finder at high speed, and I could see it clear as day. I. Have. Autism. Now I know how to help my son. Now I know how to fight for him in those damned IEP meetings! THIS I can do. I focused on him for the next few years and finally got him where he needed to be before I called the number that doctor gave me. But after one meeting with the Adult Neuro-Psyche, I had a firm diagnosis of ASD. For me, I documented everything the same way I did for my son. I even went as far as getting written documentation from my mother (report cards, letters from teachers and school social workers), as well as her own recollections of my behavior. Too bad they didn't diagnose Autism as much in the 70's and 80's. I might have gotten a bit more support in school if they had caught it. But it is what it is, right?

 

[Dina Hornreich]

Thanks for article. I have been in therapy for nearly 20 years now. I just started up with another one (I think I've had 5 therapists in the last 3 years). It has gotten to the point that it is painful to unravel my experiences with this new layer of autism. (It gets even worse when people ask me if I'm sure it's not BPD.) For example, I never realized that I am basically an imposter. The whole masquerade thing. I know how to handle myself in a classroom as a student and even sometimes as a teacher. A few years ago, I went on a full day job interview at a big state research university out here in the Southwest, and I wasn't able to anticipate their questions enough to have the answers that I wanted to give spontaneously. I started repeated myself with pat answers because I couldn't think of a response immediately. On this daylong job interview, I just couldn't keep up with all the tests I knew they were throwing at me. Contradicting me was a big one. It just left me bewildered.

 

[Maiki]

This is ME:

Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex — in a sense, intellectualizing social interactions that would be intuitive for other women.​

This was the conclusion of the expert who diagnosed me; because I stunned her with my social ease, good eye contact, and conversational skills. I am thinking my way through these things; been doing it for so long I am completely unaware of it.

Ahhh... love that!!! Thank you so much! Makes a shed load of sense to me. Truly-- thanks for sharing

 

[Paulina]

Excellent topic. I think it's a good start for you to write in this page.

I'm Paulina and I was officially diagnosed with Asperger's Syndrome just one month ago, at the age of 24. For me, it was definitely a significant thing in my life, it still is. Everything started to make sense and connect, like a puzzle....

Probably been aware of this in the pIast, specially as a kid, could have helped me in many things at that time I didn't understand of myself. And here I'm not talking only about been diagnosed, but in the person that I'm starting to find now thanks of that step. Unfortunately, TEA, specially asperger's in women still remains in the unknown.

 

[Lady Penelope]

Hi guys, I'm new. I've been seeking an official diagnosis, had first of 3 sessions yesterday. I feel like I didn't do very well though, like I didn't get my symptoms across because I rambled too much.

I wanted to know about other people, females, who have had a strong self diagnosis and sought an official diagnosis? I just want to know your experience so below is about me and my traits any input on your experience would be great.

23, live alone with partner, full time employment, college grad.

sensory:
-very sensitive to light (need sunglasses, things are too bright for me when they're not for others)
-figeting- always moving, biting nails, got in trouble when I was young for not sitting properly or rocking back in my chair
-love textures, feeling everything
-love thrill seeking and danger
-like having headphones in with no sound
-quite picky about how my clothes fit, don't like tags, certain fabrics, or anything tight --- when I was young I would only wear the same brand and same shirt etc in different colors and things that felt soft to others were literally painfully uncomfortable to me
-was told i had selective hearing when I was kid

social:
-I don't dislike social situations but they are a lot for me to handle and I don't like to be social all the time. When I am, i prefer it to be far in advance planned and I know exactly what I am doing. I don't really like meeting new people EXCEPT when everyone is new (like freshman year of college, job training class, etc) because we are all on the level playing field
- I have close friends, not a ton, but i feel like I used to be good at making friends when I was little but I'm not now and my close friends always seem to have closer friends (i'm not my best friend's best friend)
-always very blunt, say things nobody else would say, people point this stuff out but in a positive but you're still weird kind of way, i've just kind of owned it.
-if in social situations if people don't talk to me i will quite literally stand next to everyone not looking at anyone or talking to anyone
-morph my appearance or social traits to the people i'm with, did this more when I was a kid, now i just know who i like and I don't care if others don't like me.

special interests:
-as a child i went through many periods of various collections
-current special interest would be dogs

other mental health things:
-struggled with anorexia (recovered and now sort of struggle with a bit of binge eating)
- diagnosed with anxiety NOS (leaned towards social anxiety but didn't really fit entirely)

other things:
-struggle with not being able to identify my thoughts and emotions
-enjoy arts, music, performing arts, sports, exercise
-Extreme attachments to objects
-not emotional in general, highly logical and get annoyed when people don't understand that
-very intelligent
-was a tomboy when I was a kid and still not very girly
-repeat things in my head (like a line from a movie)

I'm 35 and suspected aspergers for a few months at the start of this year after reading something on how it presents in women differently to traditional males traits... then after an 'incident' I thought it would be beneficial to seek a professional opinion.

I too thought i would not be able to adequately express why i felt ASD applied to me as it is more about how i think and feel about things. As i read about females with aspergers it was like reading a biography of my confused life to this point. So even if i didn't technically have ASD as per the assessment criteria i knew there was enough info out there that i could apply to myself to assist me regardless of professional opinion. As it turns out, i found a psychologist nearby who has experience with ASD ... we had a chat ...and she assessed me as HFA. Got the report yesterday. Took about 8 sessions although she was comfortable to assess after 2 or 3.

Having the assessment reflect what i feel is a relief of sorts but i know that if she didn't assess me as HFA i could use the same methods HFA use where i need to.

I relate to pretty much all of what you wrote...right down to the dog obsession.

Really interested to hear how you go and read your views on the various threads or via the 'start a conversation' tool, as we have lots in common and it would be nice to talk to someone who might actually understand me for a change

 

[WolfsRealm]

"- I have achieved many things in my life but every success gets knocked down for me - I am like a weeble- I get knocked down but get up again-"

LOL! My theme song is Tubthumping by Chumbawumba. "I get knocked down, but I get up again! You're never gonna keep me down!"

 

[Amy Susan Rose]

Welcome! Female Aspie here as well, diagnosed at 29. Living with my partner, and currently in the final months of med school.
I didn't self diagnose, my psychiatrist suggested looking into diagnosis for ASD when I was seeing her for my depression.

Awesome!!! You go, girl. I swear my shrink is on the Spectrum and I really like him and his demeanor tremendously.

 

[Amy Susan Rose]

Welcome, louloulovesdog; from mimilovescats . This is an awesome site and you will pick up much helpful advice along with the wonderful feeling of knowing you are not the only one who acts, feels, etc. in a certain way.

 

[Gracey]

I've looked at this thread numerous times, everything fits but the diagnosis part. I'm Later in life but consider myself high functioning (until I don't function so well) This means I've got this far in blissful ignorance.
It hasn't been easy and a life time of noticing the differences between myself and many others has highlighted that perhaps I don't function in a similar way but ultimately I do function for a majority of the time.

At the moment I find myself pretty much house bound mainly due to fear. I have and old diagnosis of General Anxiety Disorder and mild OCD, I see myself as not functioning at the moment but am researching and looking for ways to actively change my circumstances.

An understanding of H. F. A is helping me to do this but I don't feel I need a formal diagnosis to do this.
But that's just me and how I go about things

 

[Myrtonos]

Did you have urgent sypmtoms as a child? Urgent has a specific meaning in this case. It means symptoms that prevent survival in society and thus prompt intense research.
An example is a servere learning disability.

 

[Sylvia]

It's good to know.

I didn't know; despite an kinda successful IT career and a happy marriage and a college degree, I was also quirky and highly intelligent and binged as a stressed out teen and got bullied and made friends when I went to a high school big enough to have an "art crowd" where my funniness and lack of girly were treasured.

My crisis came with menopause, when my brain stopped working. It was so overstressed my hands lost all strength and my usual clumsiness was turned up to eleven and it no longer properly regulated the hormones I had left.

It wasn't until I self-diagnosed and then sought out an expert in women with autism that I realized what was wrong and was able to take steps to get better. Which meant talking my NT partner into two apartments, talking my workplace into job adjustments, realizing my needs for recuperation -- my baffled doctor said my condition was caused by "stress" (and he was right) so I would go out and "have fun" on the weekends -- LOL!

Now, I know what helps me recover is good sleep, lots of solitude, and a Paleo way of eating, with certain nutritional supplements that really help.

I'm out to my friends and certain relatives and one boss at work. I've resumed work on my book about one of my special interests: cats. And I come home at the end of the work day with leftover energy most of the time.

It gets better. It really does. Once you KNOW. And you don't need an official diagnosis. Every single thing I have done to improve my situation came from my own research.

Look at the stats in my sig. It should have been obvious! But when I was born, no one speaking English knew about Asperger's.

Hi h

It's good to know.

I didn't know; despite an kinda successful IT career and a happy marriage and a college degree, I was also quirky and highly intelligent and binged as a stressed out teen and got bullied and made friends when I went to a high school big enough to have an "art crowd" where my funniness and lack of girly were treasured.

My crisis came with menopause, when my brain stopped working. It was so overstressed my hands lost all strength and my usual clumsiness was turned up to eleven and it no longer properly regulated the hormones I had left.

It wasn't until I self-diagnosed and then sought out an expert in women with autism that I realized what was wrong and was able to take steps to get better. Which meant talking my NT partner into two apartments, talking my workplace into job adjustments, realizing my needs for recuperation -- my baffled doctor said my condition was caused by "stress" (and he was right) so I would go out and "have fun" on the weekends -- LOL!

Now, I know what helps me recover is good sleep, lots of solitude, and a Paleo way of eating, with certain nutritional supplements that really help.

I'm out to my friends and certain relatives and one boss at work. I've resumed work on my book about one of my special interests: cats. And I come home at the end of the work day with leftover energy most of the time.

It gets better. It really does. Once you KNOW. And you don't need an official diagnosis. Every single thing I have done to improve my situation came from my own research.

Look at the stats in my sig. It should have been obvious! But when I was born, no one speaking English knew about Asperger's.

It's good to know.

I didn't know; despite an kinda successful IT career and a happy marriage and a college degree, I was also quirky and highly intelligent and binged as a stressed out teen and got bullied and made friends when I went to a high school big enough to have an "art crowd" where my funniness and lack of girly were treasured.

My crisis came with menopause, when my brain stopped working. It was so overstressed my hands lost all strength and my usual clumsiness was turned up to eleven and it no longer properly regulated the hormones I had left.

It wasn't until I self-diagnosed and then sought out an expert in women with autism that I realized what was wrong and was able to take steps to get better. Which meant talking my NT partner into two apartments, talking my workplace into job adjustments, realizing my needs for recuperation -- my baffled doctor said my condition was caused by "stress" (and he was right) so I would go out and "have fun" on the weekends -- LOL!

Now, I know what helps me recover is good sleep, lots of solitude, and a Paleo way of eating, with certain nutritional supplements that really help.

I'm out to my friends and certain relatives and one boss at work. I've resumed work on my book about one of my special interests: cats. And I come home at the end of the work day with leftover energy most of the time.

It gets better. It really does. Once you KNOW. And you don't need an official diagnosis. Every single thing I have done to improve my situation came from my own research.

Look at the stats in my sig. It should have been obvious! But when I was born, no one speaking English knew about Asperger's.

It's good to know.

I didn't know; despite an kinda successful IT career and a happy marriage and a college degree, I was also quirky and highly intelligent and binged as a stressed out teen and got bullied and made friends when I went to a high school big enough to have an "art crowd" where my funniness and lack of girly were treasured.

My crisis came with menopause, when my brain stopped working. It was so overstressed my hands lost all strength and my usual clumsiness was turned up to eleven and it no longer properly regulated the hormones I had left.

It wasn't until I self-diagnosed and then sought out an expert in women with autism that I realized what was wrong and was able to take steps to get better. Which meant talking my NT partner into two apartments, talking my workplace into job adjustments, realizing my needs for recuperation -- my baffled doctor said my condition was caused by "stress" (and he was right) so I would go out and "have fun" on the weekends -- LOL!

Now, I know what helps me recover is good sleep, lots of solitude, and a Paleo way of eating, with certain nutritional supplements that really help.

I'm out to my friends and certain relatives and one boss at work. I've resumed work on my book about one of my special interests: cats. And I come home at the end of the work day with leftover energy most of the time.

It gets better. It really does. Once you KNOW. And you don't need an official diagnosis. Every single thing I have done to improve my situation came from my own research.

Look at the stats in my sig. It should have been obvious! But when I was born, no one speaking English knew about Asperger's.

Hi I just have to

This is ME:

Particularly interesting is the unpublished observation that in girls with autism, the social brain seems to communicate with the prefrontal cortex, a brain region that normally engages in reason and planning, and is known to burn through energy. It may be that women with autism keep their social brain engaged, but mediate it through the prefrontal cortex — in a sense, intellectualizing social interactions that would be intuitive for other women.​

This was the conclusion of the expert who diagnosed me; because I stunned her with my social ease, good eye contact, and conversational skills. I am thinking my way through these things; been doing it for so long I am completely unaware of it.