Depressed.

Pain really has a way of isolating you in the worst way. I'm not coping anymore. I can't deal with the pain and the isolation. I feel like if I died tomorrow it would take most people a few months to realize I don't exist anymore.  People are obviously fed up with my negativity and the fact if they ask how I feel I'm honest.

So no one is asking how I'm feeling. In fact no one is contacting me to talk to me anymore. I've never existed much. I remember when Sam used to say how insignificant I was in the world. I feel beyond insignificant. I don't know what the point is anymore.

Most days I cry, I have meltdowns, I work and sleep.  It's no life. I haven't done much of anything that makes me happy. Even a kitten isn't cutting it most days, though he is really extra cute and very sweet natured.

Things that made me happy like camping, don't make me happy anymore. Not with the head pain. And the worst part, I think I have another basal cell carcinoma, this one on my nose.  Which means part of my nose will be removed and I will require plastic surgery. It sucks. I never sun worshipped. It sucks that I end up with skin cancer.

I also don't want to end up in a psych ward either, which is generally what happens when you tell your therapist or family doctor you can't cope. Two months ago, I crashed badly and had a meltdown in my therapists office .He was ready to commit me to the psych ward. All that does is watch you to make sure you don't hurt yourself and put you on medication, which in my case would cause me to hurt myself as soon as I was released.

There is no real help for the depressed.  They either put you in some form of protective custody so you don't hurt yourself and fill you full of drugs.

I've got to stop crying this morning and get myself together enough to work. I'm at work and not holding it together. I was in bed asleep by 10 pm last night. It's not lack of sleep. Though I was awake 4 times between 10pm and 6am.

Apparently the suicide rate for high IQ Autistic level 1 is through the roof.  Of course. We are intelligent to know all that's wrong and realize there is no way out.

You can't be autistic......

This is autism to me!

A friend shared this video yesterday and I don't think autism could be explained better. So I want to share with everyone.  The way she explains autism I relate 100% being autistic myself!

Was touched

Back in October  2017 when I got my autism diagnosis I wrote a thank-you note to Tania Marshall on Facebook:

Hi Tania,

I wanted to thank you for putting the various checklists on AspienGirl. I was sent by a friend the checklist for 5 year old girls, and though I'll be 55 years of age this year, I was stunned how much I related to it. With your checklist in hand I went to see my therapist and explained how each of the points on your checklist pertained to me. And for the first time in 8 years my therapist saw the ASD instead of just the quirky female patient he'd diagnosed with ADHD, SPD, GAD etc over the years. 

He had me assessed by someone specializes in ASD and I got a formal diagnosis. Now everything finally makes sense! I know I'm exactly the way I'm supposed to be. I want to express my thanks for the work you've done that permitted me to get to know why I'm different and the fact that there's nothing wrong with this difference!

Again many thanks!




--------------------------------
A few days later she responded to me:

Dear Kali, Thank you for your beautiful message and you’re very welcome regarding my checklists and my work. It’s always very rewarding for me to hear from people like you that they came across my work and were able to get their doctors Or therapists or whomever to see that all the different labels really are just one label: neuro diversity. I can’t tell you how pleased I am to hear of your experience as I know how much a diagnosis helps a person realise that they’re not weird or a freak or crazy, that just have a differently wired brain. Thank you for taking the time to message me and congratulations


I was very touched. I didn't expect any kind of answer, but I wanted her to know how much her work on the topic is appreciated by women who need answers.

Why functioning labels aren't helpful

Functioning labels aren't helpful. Basically high functioning is another way of saying your autism is hardly felt by others. Low functioning means it is heavily felt by others. In real life, I might be an autistic level 1 but it's not that helpful on the days I'm so overwhelmed and I can't get out of bed. Or I'm having such a bad meltdown that people think I'm bipolar or have serious anger issues.

Women who suspect they are autistic and get turned away need another doctor. Saying you don't have enough problems to warrant a diagnostic is STUPID. it's like saying you're a little pregnant. We're not going to address it now. Come back when you're more pregnant. 

 I got to 54 years old without a diagnostic. I spent 2/3 of my life thinking I was a loser who can't keep it together. I spent a few years researching bi-polar disorder and was convinced I might be bi-polar 2. Except I asked my mother and she said I was nothing like my dad, who was bipolar. If I'd known I was autistic maybe I'd have a better self image. I got told most of my life "For a bright girl you sure make stupid choices". Yeah I have an IQ of 135 but on some days I can't get out of bed. How is the functioning label helpful???

The younger an autistic person knows they are autistic the sooner then can 1) know it's ok to be the way you are 2) know there are challenges 3) get the resources and help when you need the help.

In my 20's and 30's I struggle with work, motherhood, relationships.But I trudged through. The older I get the harder it is to spend all my life masking. Pretending I'm something I'm not so I don't stick out like a sore thumb. It's also harder to keep going and there is such a thing as Autistic burnout. I've had 2 so far.

As far as getting diagnosed for autism, I used the checklists from Tania Marshall. She has one for school aged girls and one for adult women. The one for school aged girls was helpful for me at 54 because both my parents are dead. I could at least describe myself at 5-6 years of age to the therapist so he could see my issues aren't new. I had the same type of issues in grade 1. 

Once I convinced my therapist I could be autistic, he reviewed the IQ tests, the reviewed the MMPI, [I did those 8 years ago, when he first assessed me with ADHD] asked me questions about my childhood and then sent me tested by someone else in his office who had me do the ADOS [which is a test aimed at children and teens - so explain how to brush teeth, make a story out of random objects, make story from a book with just pictures. etc.. ] and apparently though I thought the ADOS was weird, it was that which confirmed my diagnosis. My therapist then said I was really "high high functioning".

Yeah. He actually said that.  Meaning I hide my autism so well it took him 8 years to notice it, even though I've mentioned it at least once a year the past 6 years!   

So most days when I get home from work, I cry for an hour because I'm tired and overwhelmed and can't cope. So I'd rather autism level 1. Because I certainly don't feel like I'm functioning!

I never knew

Until recently I never knew how much of a great actor and imitator I am. I'm impressive. I mean I hid my autism and my stims for 54 years!

The reason I found out I was autistic now is because the amount of effort I put in to pass in society is draining me faster as I age. This article is so much on point, I wanted to cry after reading it.

Autistic people are not failed versions of Normal!

Great Ted article

I spent most of my life seeing myself more as a failure than as a success. Because somehow my high IQ didn't translate in an MIT degree.  However now that I know that I am autistic and that to function in society I had to work 3-4 times as hard as most people, I'm actually a success.  I always wondered why it felt things so were difficult. I was always told I seem to make things so difficult. Well because for me they were difficult.

I realized recently that the 8 years of therapy I've been doing has empowered me. It has given me the ability to understand my emotions.  I know it seems incredulous that a 50+ year old woman would not understand her own emotions but I didn't. I couldn't identify how I was feeling. I could not understand why I got so frustrated at times or would just blow up.   Now I understand that I get sensory overload.  When I'm overwhelmed anything can set me off to have a meltdown or shutdown.   I  am able to identify emotions and process them sometimes on the same day, or the next day.   Before it could take me weeks or months to process. Sometimes I'd forget about the event instead of identifying the emotions associated.

It explains why sometimes when I relate a story from the past I can get very angry. I never processed the emotion then, each time I retell story I reget angry all over again. It also explains why I can seem to lie when asked how I'm feeling and say different emotions for when I appear to have same emotion to others....

I've realized also that the 8 years of therapy gave me the language to be able to tell my therapist I thought I was autistic and why. I've suspected on and off for years honestly, but then kept thinking... my mom would have known... she was a first grade teacher.   I know when I first read about Aspergers nearly 20 years ago, I wondered how much it applied to me... I knew that I had many male friends around me that would be on the spectrum, especially in computer and BBS related environments.

I could have written this

Found this article and the list is so me. :)  I wish my mom was alive and I could show her why I never managed to graduate from university. Why such a bright girl has so many fears and sometimes gets so stuck in her own head...

For anyone who knows me.

I have meltdowns. When I'm stressed they happen daily. When I'm not too stressed and my diet is good they might happen weekly or even less frequently. But ultimately, I've had them since I've been small.  This page on Aspergers or high functioning autism, explains it really well. Better than I ever can.

Neurodiverse eh?

I'd be curious how many friends and family are possibly on the spectrum. There's a quiz found here

These were my results:

Your neurodiverse (Aspie) score: 146 of 200
Your neurotypical (non-autistic) score: 81 of 200
You are very likely neurodiverse (Aspie)

Feel free to leave results in comments, if you like! 

Everyone who knows me knows I'm an insomniac.

Apparently there's 3 reasons.

1) Hyper-vigilance due to someone nearly killing me in my sleep as a child.   Anything and everything wakes me up

2) Autism/ADHD.  Apparently though it's known children with autism and ADHD have more sleep issues than NT children, it is only beginning to be studied. I think some thought the sleep issues were related to the medication some children took. 

This was an interesting article on the subject.

There is this article as well.. but I'm not sure I like their conclusions.  I've always had sleep issues. I suspect it might be reason I'm hyperactive. However my lack of sleep did not turn me into an imbecile.

3)  Genetic mutation that allows you to sleep less.   My grandma, my aunt, my eldest and I seem to be able to function on 2 hours less sleep than most people.

Knowing is half of the battle!

I was asked if knowing I was on the Autism spectrum makes any difference?  It sure does.  I spent most of my life thinking there was something horribly wrong with me. That I was broken. I suppose I'm intelligent enough to notice I never fit in.

The thing about autism is that it really does explain all of my quirks. From the sensory processing disorder, things like I really despise having water drops fall on me, yes I HATE taking showers, I hate having my hair touched or played with and I definitely don't like being touched by people I do not know. I don't even like being touched by people I do know unless I'm in a good space!

It explains the OCD. Why I'm rigid and I have to do some things in certain ways. At least I'm just rigid for myself. When I train others I show them how I work but tell them if they find a better method that works for them they can use it.  My OCD is not the type that if I don't do it that way I will die, or something bad will happen. It's an OCD where I just need to do things a certain way just because I'm me.

I'm rigid in that certain things have to be done a certain way. I need to plan ahead to know what's coming so that I'm not a completely nervous anxious mess. The thing that freaks me out the most is going to new places where I've never been. For instance the court case in April in de Salaberry. I was so nervous before and during. I nearly broke Terry's hand I held it so tight.

Or like my first day at my first full time job at The Quebec Real Estate Association, where my first husband took me to the front door, holding my hand and told me I could do it. He was right, I did it for a year.  Also probably why I've been at the same company for 25 years.

I have all sorts of anxiety, in fact I have generalized anxiety disorder. The minute something goes off my expected script I get anxious. I can't explain why I get anxious but I know it's been paralyzing me with fear since I was a small child. It's why I've been known to stay home entire week-ends and spend them in bed.  I suspect too that too much anxiety sends me to be overwhelmed.

Next, I get overwhelmed. I can only handle so many things, so many constraints or things that are unexpected. This is why 2017 has been so hard. The court case, the cancer diagnosis, the flooded basement,  the car accident, the cancer surgery... like enough already. I haven't processed much of anything.  And because there's been so much I have been so overwhelmed that I can't even reach out to people. I really haven't talked to anyone and I'm so overwhelmed after work sometimes that it ends up causing fights with Terry. He tells me he moved one item in the house or cleaned a room and it freaks me out.  Because it's another fucking change.  He's been so nice in helping me and I spend half of my time freaking out because something has moved.

And the meltdowns and times I freak out.. It's not to get my way! It's because I'm fucking overwhelmed.   I've spent most of 2017 overwhelmed. Usually what helps me is my hobbies.  I've used sewing a lot this year because I've had such severe social anxiety at times I can't leave home, or I've been too overwhelmed to leave home.  So not much photography. I couldn't go camping either, my head still hurts due to the surgery.

Its also why at times I need to be alone, to regroup, to calm down, to get less overwhelmed.

I love the show "The big Bang Theory". Mostly because the social misfits of the engineering types fit with me. I've spent half of my life hanging out with men with those quirks. I found Sheldon a bit much at times, especially with the "My spot"  for instance .But I'm like that too! For at least where I sleep in my house.   And the fact Sheldon will knock 3 times and call a person's name. I don't do that, but I feel the need to explain things in several different ways to make sure I'm understood. I've always done that.....

It explains why I've worked 25 years where I am in a large  computer manufacturing company, where people with autism manage to fit in. I am sure  25% of my colleagues are also on the spectrum.  I've identified the ones the most like me, who understand and or accept me as I am and do great team work with me. They see how skilled I am at my job, just like I  admire their mad skills at their job.  I learn best from them usually too as they explain things in ways I understand.

It explains why I am more comfortable around animals than humans. Cats find me. Always, everywhere I go.  And it's love at first sight!  And not just house cats, sometimes bigger ones like Lynx find me.  And animals rarely ever threaten me. Usually we are instant friends.

It explains why I spent a huge portion of my life thinking I was "faking it". I wasn't really, but because I have to hide who I am for the most part to fit in and not make waves, it's exhausting. And outing myself to others often finishes with losing friends. Very few people stick around after they get to know the real me. Not the one they see from time to time, but the in depth one.

Terry doesn't care what label I have, he says he loves me for being me. Quirks and all. And because I am who I am I wonder if this is true. It's hard for me to accept that someone could really love me for me. Though knowing I am on the spectrum certainly helps. I know that I am just the way I'm meant to be.  I'm just not neuro-typical.

This is how you spend more than 50 years of your life without knowing you are autistic!

Yesterday I went to my therapist.  I did years ago both the MMPI and IQ tests after he diagnosed the ADHD and we went through the results again. Apparently there are new ways to interpret the MMPI and so he had an assistant put in his computer and had it processed electronically.

When I did the IQ test years ago all he told me was that I was way above normal. That doesn't mean much as normal is 100. Also between 95% of the population fall between 75 and 130. As it turns out I have very superior IQ, being that my score is 135.

This is consistent with other relatives.  My biological dad's IQ score is in the 130's.   I had Izzy tested when she was 3 and a half, not particularly to know her IQ but because she is born 7 days after the cut off for school and I felt it would be a shame that she would miss a year for 7 days. So she was tested. Her IQ ranges between 140 and 160.  I don't recall exact numbers, but there was a verbal and non verbal test done.  And one test she was in the 140's one test she was in the 160's.  This puts her closer to genius level.  I'm sure Sam is also in the same range between 130-160.  She was never tested but fits right in with the rest of us.

Here's something interesting, have you ever met someone with a high IQ who had good social skills? It seems the higher your intelligence the more awkward and less social skills you have? Which made me ask if all geniuses were almost always on the Autism spectrum?!?!? I was reading not too long ago that three times more autistic people have savant gifts than neurotypical people. I find it fascinating.

So it's been determined.

About a month ago I was evaluated as an adult to see if I was on the Autism Spectrum. The woman who assessed me is part of the West Island Therapy Center where my therapist is, and specializes in diagnosing autism.

Despite seeing me for just one hour in a professional setting, where I was on my best learned behaviours, she was able to see that I was on the spectrum. Things that stuck out for her was the way I use language, sometimes it's very atypical. Also when I was asked to read a story, while my voice had the proper intonations {my mom had me practice reading out loud with right tones...} my body language did not match my voice at all. Also she found my emotions sometimes did not match my body language.  All very subtle stuff to observe in a one hour assessment.

My therapist in the 8 years he'd been seeing me had missed it though as he now looks back he's realizing that things he attributed to 'personality quirks' were actually behaviours on the spectrum. He says that with women, unless you are especially non verbal, even a trained therapist in learning disabilities can just think the person is quirky rather than autistic.

I'm happy with this assessment. For the first time in my life I KNOW what is 'wrong' with me so to speak. I've always known I was different though not to what extent. As I got older I realized to what extent. Now I have to realize that instead of thinking I'm a loser who can't do anything right, I have to start looking at the fact that despite my limitations, I have managed to get pretty far in life and I should stop beating myself up for mistakes. I'm different not less.

Also this does not negate the ADHD diagnosis, the ADHD is just a subset of the ASD.

Luna Lindsey: Splines Theory: A Spoons Metaphor for Autism

I found this article and I will need to read it a few more times, but it explains so much.  It will help me explain me to others. 



Luna Lindsey: Splines Theory: A Spoons Metaphor for Autism: An incident occurred last week where my child unexpectedly needed a ride to school in the middle of my writing session. And it ruined my wh...

Towards an ASD diagnosis.

After the therapy session today, my therapist is now 99% sure I'm ASD.  He's also going to re-run the long diagnostic test he had me do 6 years ago, through the system again, apparently they analyze the data differently than they did back then.  Also next appointment, he will give me a test  to identify the level of my neuro differences.   I will also be meeting with a woman who works in the same office, for part of the test. She is their specialist in diagnosing autism. One part of test she will be doing is showing me pictures with facial expressions and see if I can identify them.  She generally works with children but apparently has diagnosed several young adults recently. I bet I will be the oldest female adult she's ever had to diagnose!

It feels good to know. It all fits in. Like I'm not missing parts of the puzzle anymore.  All the other health issues I have tend to be typical of people with autism. From the general over sensitivity, to the asthma, eczema, seasonal allergies, food allergies and intolerances, as well as gluten sensitivity, add the social anxiety, the generalized anxiety, hating change and the sensory processing disorder . Hell even my painful periods and hellish PMS which was closer to PMDD, it all fits.

Whether my mom knew or not or suspected, what's for sure is that she tried to help me be as autonomous and independent as possible. She gave me hundreds of coping skills and she had figured out many things about me to make me function at high levels.  My therapist thinks I'm a successful. person. To have managed to get myself where I am and function given all the other trauma's I've had, I'm ok. Now I just need to convince myself and not be always so hard on myself.  I often see myself as a GINORMOUS failure.

I need to keep repeating to myself, I'm different, not less. 

Autism in Women in Quebec

I recently stumbled upon the fact that they are doing studies in Quebec and France about women with autism.  It's called "l'Autisme au feminin".  You can sign up here.

According to what I've read currently there is 1 woman diagnosed for every 4 men.  This is apparently wrong, there should be 1 women diagnosed for every 2 man.  Meaning that most women never get diagnosis.  Which is sad.  Knowledge is everything.  I feel so relieved. I spent most of my adult life knowing I was different, thinking I was half assed crazy but never been able to put my finger on it.  I feel so much better. I feel like for the first time I see the light. It explains EVERYTHING

This particular study is in French, so you can only participate if you master the French language, but you don't need to have an official diagnosis to participate.

I don't expect to benefit from this study, but hopefully the younger generation of girls will have an easier time getting diagnosis and treatment.

Vaccines don't cause autism

Let me tell you something. I've been recently told I'm ASD.  I've never had the MMR I already had the measles the day they passed in my class to offer a vaccine. I wasn't fully sick yet, I just had the 'cold symptoms' that first appear before the tell tale rash and fever. They asked me how I felt, I told them, they didn't vaccinate. Three days later I had the measles.

I have had both the measles and the mumps. Both left me with health issues. I spent 1 month in a dark room while I had the measles,  it was the only time I was completely delirious for days, I came very close to death and I've been hyper sensitive to light since.  From my late teens till 3 years ago I wore glasses that were photogrey. The minute I walked outside in the sun, my glasses would go dark. Each time I see an eye doctor I get asked "Do you realize your eyes are really sensitive to light" ... Uh no. Never noticed, she says squinting like a mofo. I have an EPIC crows foot on my forehead from decades of squinting.

The mumps itself wasn't a big problem, but once it was over I couldn't stop vomiting. I remember being taken to the clinic with a bucket.  To this day I have bad motion sickness. To the point sometimes I can't even rock myself or rock in a rocking chair. I make myself motion sick. Before the mumps, I could go to amusement parks, I could be in a car and NOT always be car sick, I used to enjoy using swings and flying high up in the sky. For years after the mumps I would HEAR a swing and it would give me motion sickness!!!!

I don't doubt that vaccines might have negative effects on some people.  I'm highly sensitive or allergic to so many things. However the vaccines I did get probably prevented me from developing other life long side effects from having caught a preventable infectious disease.

Also really, is saying having an autistic child is worse than having a dead child? Some of the diseases we all get vaccinated against have high mortality rates and/or high life long side effects.

As for ASD, I personally don't think it comes from environmental factors. As far as I can tell, and as far as  science seems to tell, ASD appears to be something nature is not taking out of our genes, this means there's a benefit of having people with ASD.  There is an evolutionary advantage for nature to keep the ASD genes in our genome.

This blog on Aspie women has been very helpful

This describes me. Especially the social hangovers! But so much else.  It's all making sense. Like a puzzle. So many things I could not put in words.I mean I always knew I was different, but I didn't realize I wasn't neurotypical until the original ADHD diagnosis 6 years ago. I don't have words to always describe how I'm feeling.  This social hangover, I was never able to express it except to say I needed time alone

What got me to really push my therapist to look at possibility I had an ASD, was this blog post, shared by a Facebook friend. She identified with it herself and suspected I might identify with it too. She knew I was in a position to actually get a diagnosis, whereas she's less in that position.

I went through the 30 points of that blog post with my therapist point per point, describing how I was at 5. I think most points hit home. With this he was able to see me, without the the hundreds of coping skills We discussed it first in early May. Last appointment in early June he said he thought about it and it all fits.

That he's sure without more testing that I am of the Asperger type of ASD, though that term has now been dropped from the DSMV.  We discussed doing another test, but I think  it might be more helpful to me to bring the blog post I linked earlier under social hangovers above and discuss the points that apply, and ask for help in the points where I struggle. I can put it in black and white, though many points have been previously identified.

I've been beating myself up for most of my life for behaviours that I can't help. I'm wired a certain way, I'm different, not less. Having mostly identified my weaknesses I can make a plan to help myself manage life and manage my stress and anxiety better.  And not beat myself up so much when I crash.

Something a fellow ASD said the other day resonates ; "We seem to know ourselves deeply but seem to be also running in  parallel with the rest of society"