Other late-diagnosed older aspie women?

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Was dx'd in my late 30s. - I'm still there so it's not been long. I'd had my suspicions for about 5 or 6 years.

It was a bitter sweet diagnosis.

I'm 44, diagnosed about 3 years ago. I had suspicions it was related to autism when I was a young kid - but back then yhere was not a recognised "spectrum" - just LFA - and not much was known about it .There was a lot of misinformation and on the (mis)information available at the time I discounted it and resigned myself to the fact that I was terminally weird and no-one else in the world was like me. Maybe a decade ago a friend was having problems with her kid and he was eventually diagnosed aspie. I did some reading and the pieces started to fall into place.

I found out quite recently that my mother knew all along, but never told me and never made any allowances - in fact she had stricter expectations on me than my sibs and made derogatory comments about my behaviour " You're just like a bloody autistic kid!" So that really hurt.

Voyageress: Getting a formal diagnosis is something that shouldn't necessarily be undertaken lightly.

If you have a UK driving licence, Asperger's Syndrome is a notifiable medical condition and you have to let the DVLA know and get doctor's confirmation that you are fit to drive. And this can result in increased insurance premiums.

If you were to get a formal diagnosis and not disclose it, it might invalidate your insurance in the event of an accident.

Personally speaking, I don't have any problems driving (although I don't have a UK licence, I passed my test in a different country).

I was formally diagnosed at age 37 and I do fear that if/when I get round to taking a UK driving test I won't be able to afford the insurance premiums and won't be able to afford to drive a car anyway.

Voyageress - you are certainly not alone in going through these sorts of experiences. I have been in a similar work situation & the stress it imposed was quite incredible, I am just about back to 'vaguely' normal-for-me several years later.

Just knowing there is a reason for some of the difficulties you describe is in itself a powerful revelation. Knowledge of self will guide a better path, where you are able to choose. For the things you can't choose, you will survive the ride, though it may be very tough. As I said, just know you are not alone.

Thanks for the welcome!

English.Lulu - v. interesting point. I'm in the UK and have had a license for the past 11 years and been driving regularly for the last 10. Only had one twang in all that time, which any driver could have had.

Are there any other advantages/disadvantages that a person with a DX in the UK should consider with regards to 'bureaucracy'?

Looks like I'll to have another think about DX at the mo. I'm currently waiting for funding, but if this doesn't come up I won't be able to fund it privately as it will be too expensive so I wouldn't push ahead with this anyway. Could just about justify the financial outlay for the initial consultation, which was more for my own 'sanity'. The professional first thoughts were ADHD with borderline AS. However, as I've been able to adapt to the NT way of the world by disguising and calming down my symptoms and behaviour I do appear 'normal'. But I have a heck of a lot of other issues I've buried quite deep and need sorting out.

Nier - thanks for your words. I know that I'm a survivor and a tough bint (as I'm sure a lot of us older Aspergirls are!). And knowledge is power. Let's all keep sharing our knowledge and hopefully we'll be able to spread a bit of power ourselves.

Vx

So, maybe it's good to have the knowledge and better to keep it to myself, eh?

My greatest issue right now is navigating out of the mess my life has become. So much of this could have been averted had I understood what was going on. Being married, having 4 kids and several jobs - I was trying to catch up all the time and never got the chance to reflect. I shouldn't have been doing any of that stuff in the first place but it was just the easiest place for those around me to shove me.

I'm almost finally free of encumbrances - everyone who knows me hates or pities me. This isn't who I am, it's what's been put upon me. I'm so done playing everyone else's game. Now that at least I know what's up, I have to... get to start over... again.

I get FaceBook messages from Autism Women's Network, AWN and I find them very helpful. Do any of you know of other sites that might be of use to us older gals?

http://autismwomensnetwork.org/

diagnosed,,, three? months ago age 31... family suspected through my life... enough to have a conversation about it in front of me as if i wouldn't overhear... didn't go and get diagnosed till my fiancee (who was diagnosed) told me that i likely was as well.

I'm curious if anyone has found any books or other resources that really helped you better understand being an adult aspie and/or being a female aspie. So much of what's out there seems to be written for parents dealing with children on the spectrum and/or based on a more male model of Asperger's. Not to mention the fact that there is so much stereotyping stemming from the fact that most studies seem to involve kids and to be done by NT's--so on the one hand there are observations about aspies that could apply to most children, like supposed lack of empathy, and other ideas that seem stem from a lack of appreciation for our differences--like the notion that people on the spectrum (I've actually seen this written in a few places) "act like royalty" and "have to have their own way in everything."

As a grownup woman who has been dealing with this syndrome all my life without knowing what I was dealing with until recently, I found it very hard even to identify myself as aspie to begin with--most of the tests seem to use a model based primarily on children and/or males. Now that I have finally cleared that hurdle, it is still so difficult to separate out the stereotypes and find useful information that can help me cope better.

Last edited by Selena on 24 Feb 2012, 2:53 pm, edited 1 time in total.

Selena, the best book I've found so far is Rudy Simone's Aspergirls. This really helped me in my journey to self awareness and dealing with a lot of my issues.

I do agree that it's nigh on impossible to find anything out there which addresses the challenges us older female Aspies face. Hopefully in time that will change, but I think it's going to be a long and drawn-out process.

Also, it doesn't help when we've spent maybe 20+ years trying to fit in and hide our differences (unconsciously or consciously) in order to survive in the NT world. On the surface we appear 'normal', but hang around long enough and our quirks gradually become apparent and the problems begin... and the 'here we go again' feeling hits the gut!

Will post anything useful on this thread if I come across it.

I self diagnosed too, about two yrs. ago. I don't want to tell people for sure that I have it though, cuz no proper diagnosis was made. I have brought it up with some people and they generally like to just cut me off with "No, you dont," meanwhile knowing absolutely nothing about AS in females.

On another website, I read about a book by a woman with autism--Nobody Nowhere by Donna Williams. It sounded interesting, I was thinking of getting it. Has anyone read this?

I have also read Temple Grandin, looking for other books (or articles or blogs) by other women on the spectrum. I've been finding that works actually written by people with ASD tend to offer a lot more useful information whereas books by NT "experts", although well meaning but still tend to fall back on stereotypes and often have a subtly condescending attitude, even when they are written by people who are parents of children on the spectrum.

Well, I've been pursuing a formal Dx but with absolutely dismal results. I've got all kinds of DXs, most without any testing (some after just a few minutes of being in a room with a counselor). I wish I could say it's been loads of fun, but all the shrinks leave me more frustrated with life than ever. I have been in & out of counseling since I was a child. No one can tell me what's wrong with me though I strongly suspect AS (self-Dxd after my oldest daughter was officially Dx'd with AS several years ago). I've done enough research to even see AS in my dad. I did see one doc who is supposedly an expert on autism & the spectrum, & got DXd with psychosis. I have no wish to harm another living soul, human or otherwise besides self-harm to myself out of sheer frustration with life. I have severe sensory issues, meltdowns, etc. I stim, prefer animals especially my dog to human contact, have no friends (never have), etc. Tried to convey that to her, but her response was that I was so abused as a child I couldn't make friends due to distrust. Which is really strange because all through elementary school, I would go home completely emotionally crushed, because I observed that kids could be friends with others, just not with me. I tried all kinds of things to be a good friend, but was bullied & shunned continually. By 7th grade, I gave up trying to get along with my peers or anyone else, & just took to living in my books, & through my art. Funny, I am now 50 years old, & nothing has really changed. I have another appointment coming up in a couple of weeks, but have lost all hope anyone will ever understand where I am coming from. Feels like I am completely cut off from humanity & once again am left to slowly fade way into the nothingness I came from.

Voyageress all I can say is that you have described me to a tee, wow. The only differences are I don't have a photographic memory for most things, especially people & what they look like, and bullies outside my own family tended to leave me alone because I just went into myself so deeply that they couldn't get to me and so went annoyed someone else instead. Bullies inside the family were a problem. Backgammon I could play from morning 'til night, never tiring of it.

Your post has obviously hit a chord with many here, it seems to have the most reponses, you have a great way of explaining. I am also a 42 year old mum and I intend to show your post to my husband who says I can't be AS because even if I'm not comfortable, I do pass myself socially when necessary. I don't see how he can make such a sweeping judgement without at least trying to understand what the condition is, so I will try to educate him, then if he doesn't respond positively I will not discuss it with him more.

My husband used to complain about our son's lack of integration, saying he didn't act like the other kids, was different like me. I thought he was/is wonderful, and just like me only better. Now our son has learnt better integration, he is very bright and can pass himself, so no more complaints means no more problem? I'm keeping an eye on that one.

I am suspicious of how a formal diagnosis would affect the lives of either of us. Higher insurance, job applications, being not trusted as rational (ironic, I know) by NT professionals are the downside. Where is the advantage?

BOOKS; I read "Women from another planet" and found it interesting, written by various women on the spectrum. Can't remember the author/editor's name.

One thing to point out to people who say: "But you can't be Aspie/on the autistic spectrum, because you pass for normal!" is to remind them that it's often a developmental delay, as opposed to a complete and total disability/inability. Otherwise, why would so much time and money be spent on therapies and interventions for young children? Recently I've even read a couple of articles about children 'growing out of' autism diagnoses, giving rise to the question: "Were they ever autistic to begin with, or had they been misdiagnosed?"

Remember, there's the issue of developmental *delay*, so some skills can be acquired and improved. It doesn't change the underlying problems, and it doesn't mean the person who has acquired or improved those skills is necessarily now 'normal'. (That'd be like saying someone with poor hearing who wears a hearing aid now has 'normal' hearing, no they've adapted, with aids, perhaps using lipreading or sign language, just as people on the spectrum can adapt through interventions and therapies). It can be quite frustrating and exhausting having to operate at that higher level. Aspies are often of higher IQ/intelligence, so can analyse situations and appreciate their deficits, take action to remedy them, and as a result successful pass for normal.

Your husband might perhaps find reading Lianne Willey-Holliday's book Pretending to be Normal a useful insight (although I find it a bit whiney and annoying in tone).

It's possible to have a photographic memory in many respects and yet not be able to remember faces - prosopagnosia, or face-blindness, is another common trait. I used to have an almost photographic memory as a child, yet I've always tended to struggle with faces.

Jean Kearns Miller, 1st Books, 2003. Collection of observations, conversations & experiences of a variety of adult women on the spectrum. A different book to the usual single author biography & well worth a read as it's like a concentrated forum discussion on paper.

Thank you for your comments, EnglishLulu, I will get a copy of "Pretending to be Normal".

As for social developmental delay, I certainly experienced many more problems as a child, having no idea whatsoever how I was supposed to make a connection with the other children in school, and not being bothered by it either, until aged 10 another girl chose me to be her friend, much to my surprise. After that I began to learn how to socialise. In my early twenties I began to learn small talk, around 30 I learned the "does my bum look big in this" question does not require honesty. I am still learning, and I have many sensory issues and do meltdown at intervals but does this mean I am AS? As a child I was told I wasn't because I "wasn't obviously disabled".

Another possibility is depression I suppose. When I take prozac (various times over the years) everything changes.
My sense of touch changes dramatically with prozac. I don't mind a light touch as much, I don't go completely crazy if someone taps me on the shoulder and my epilator starts to hurt me! Normally I cannot feel the epilator hurt at all, I feel a pop, pop, pop as it pulls the hairs out, but no pain, just an interesting sensation. Normally I am so ticklish I cannot be touched at all and I must reverse the direction of the touch by stroking my skin in the opposite direction, but not if I take prozac.
On prozac sounds don't distress me unless really high pitched, and flourescent lights are less inclined to turn my brain function to mush and I am more relaxed around other people.

So why am I not taking prozac?
Well first my doctor was saying I couldn't stay on it as I had been prescribed it to calm an overactive fight/flight response that wasn't turning off, not actually for depression. Secondly I lose my passion for my hobbies which are important for me. Thirdly I noticed a large drop in IQ which doesn't seem to have completely come back again, but maybe that is age.

My only problem now is that I feel I will have to start taking prozac again or give up my job knowing that I am unlikely to find a less stressful job than the one I have. But I am not coping with the demands of that and having so little time alone, some days none at all, even though its only part-time. My husband says he doesn't mind if I don't work, but the money worries me.

So on prozac I cope with life better, but am not me, and in spite of my oddities, I like being me!

I feel as if starting prozac again will push the real me out of existence for that time, and that is exactly what I did last time I had this choice, so I'm reluctant. I feel my times on prozac are what has convinced my husband I am "normal", so my true self becomes less acceptable as people expect more of me.

Has anyone here any ideas how I can make such a difficult decision?

On the subject of prescription drugs did anyone else here have a terrifying reaction to pethidine during childbirth? Sent into outer space complete with all my pain, utterly unable to communicate with anyone who could help me, so they thought I was fine?