Late/missed diagnosis- Identity Crisis ( Hi )

[Chameleon In Recovery]

Hi Everyone,

I’m new here & am really happy to find a group to connect in that isn’t Facebook or Twitter. Social media tends to get too overwhelming for me. I usually stay off of it for 60-80% of the year.

I just turned 32 and have had quite a dark ride in this lifetime. I have been hospitalized twice and have not wanted to be here more times than I can count , but it started at around age 5. I have been labelled to have major depressive disorder and anxiety- I have never accepted these diagnosis’s, as I always felt it was situational. School always said ADHD- this one may be true however I don’t feel like I need to be on the go. I love to just do one thing. But definitely can get distracted easily. I met my Dad a few years ago and he was the first to mention Autism.

For the past few months I have made Autism my special interest. I spend at least 4-6 hours a day reading articles, research, filling out quizzes, emailing resources etc. i have never felt more understood in my life than reading about autism in females. I understand why it was missed- I’ve masked to keep myself “safe” and “liked” but that also lead to abuse, misunderstandings and likely me seeming inconsistent or in genuine since I was being who I thought others needed me to be. I would take bits and pieces of characters on my favourite shows or a peer and try to use those things.

I have never been able to have friendships or relationships without relying on substances and have been known to disappear out of no where because I’m uncomfortable. I don’t know how to tell if I’m in sensory overload, If I’m hungry or tired- so many things I didn’t notice for 32 years. I’ve been homeless, abused, manipulated , used - you name it. I think my looks and how I was seen if relying on alcohol made people have a special interest in me. I look at my past and feel a little sad for my younger self. But at the same time, I feel knowing this is what has been going on will save my life. Knowing I’m not lazy or stupid or a drama queen. Knowing WHY just brings me a little bit of hope, you know?

I’ve scored very high on all tests - the one my doctor did with me apparently puts me at a level 2. To the naked eye (when I’m acting ) this notion would likely be impossible to accept. However, to anyone who has lived with me & spent time with me normally - I think they’d know. Maybe. I don’t have family or a support system but I have found a foundation in my city to help me and a therapist on a sliding scale who used to be a behavioural aide to autistics for 10 years. I hope this isn’t too much information but I am hoping this is the place to elaborate in this way because likely there are others who can relate ?

Besides my doctor, my self diagnosis with MANY tests and copious amounts of research plus speculation from a “parent” - is it worth getting an official diagnosis? I can’t afford the 3000.00 it usually is in Canada - but maybe there is a psychiatrist that can help. I would love to hear pros and cons in your opinion to those late diagnosed if you’re comfortable sharing . I also wonder - how many of you suffer from depression and anxiety? Do meds help? I’ve had such poor experiences with meds in the past . I wonder if it’s more due to the autism and sensory overload and lack of relationships / trauma etc …. Plus being situational ..

Anyways, thanks for reading. I would love to chat and connect or hear your experiences if you’re comfortable. I am super caring , I love animals , love listening to music, researching, watching my favourite series over and over, eating chips (lol) , being in water, sailor moon & playing piano.

I’m looking forward to meeting ME and also YOU.
X Merry Christmas

 

[tree]

 

[Wolfnox]

Music helps. Especially when depressed or feeling lost. Even when you're overwhelmed put on headphones and play something relaxing.
Just to say I am officially Autistic diagnosed. Asperger's Syndrome. Though the term is no longer used officially.

 

[Ronald Zeeman]

You sound like an interesting person and a Canuk at that. Welcome to the site. I Have lived my life without a diagnosis. Must admit figuring it out for myself was enough for me I like solving real life mysteries. It did not change who I am, I'm retired now explained a few things. The only thing that may have been different was the trajectory of my career, after all information is power. Found out yesterday my understudy is now a manager fast tracking up the ranks. Great feeling like watching one of your kids make it.

 

[Rodafina]

I’m looking forward to meeting ME

I love this! I think I am doing that here as well… Meeting myself. But there are many others here to meet as well. I will reiterate what I said in a different thread, you seem like a perfect fit. I’m looking forward to seeing how your journey through the forum goes and hopefully being a part of it.

 

[Neonatal RRT]

@Chameleon In Recovery, welcome.

You are NOT alone in this. Many of us were not diagnosed until late in life. Depending upon your upbringing, the people around you, your culture, your educational background,...will often determine how you will respond to your diagnosis of autism. Some people get quite anxious, some try to hide it, some are ashamed,...and others, like myself, found it to be a great relief to finally have answers to decades of questions. "I am not a failed neurotypical,...I have autism." With that settled into your psyche, only then can you accept the fact that you are different,...with different expectations. Personally, even though I had and have my own difficulties with the neurotypical world,...I find it quite comforting that I don't think and act like the majority of people,...as the world is pretty messed up by our own doing.

The other aspect of this is, don't expect others to have empathy for you. As an adult, your diagnosis will not change the perception that others have of you. They've made their "moral diagnosis" and in many cases, due to their ignorance, will only see a diagnosis as a "label" or an unacceptable "excuse". Most people only associate autism with images of severely affected small children,...not adults.

Is it worth getting an official diagnosis? Yes and no. Depends upon your situation. If you are having the need for accommodations from your employer,...then yes. Human resource departments will need an official diagnosis and recommendations from your doctor. If you are applying for disability, assistance, or are in trouble with the law,...anything that involves the legal system,...you will likely need an official diagnosis and paperwork to confirm it. In most other situations, then,...no. Now,...is there a risk of "self diagnosing" yourself incorrectly? Absolutely.

Depression and anxiety are often hallmarks of an autistic brain. Autism is one of the "low dopamine" neurological conditions, with at least 3 different genetic variants within the community that adversely effect dopamine turnover. Depression can vary significantly from mild to severe. Anxiety is a result of a combination of an imbalance of glutamine (excitatory) and GABA (inhibitory),...with the autistic brain in a chronic excitatory state,...some mild, some severe. Furthermore, many adult autistics will have enlarged amygdala(s) (your fear center). Repetitive behaviors, "stimming", strong likes and dislikes, routines, "certain ways of doing things", poor emotional control, etc are often a result of these neurotransmitter imbalances.

We can carry on with this conversation for a long time,...so many angles to this from meds, to supplements, to special diets, to therapy, etc.

Welcome, again.

 

[Duncan74]

Welcome. I'm in the stages - the 'word' autism came out the blue 3 weeks ago aged 48 and suddenly doing pretty much same as you. Research, reading. I got through every test I could find in the first 48 hours, and am going through that 'who am I now' conundrum. And I know the answer is 'same person as I was yesterday/last month' but the very issue is that person was lost, confused and if I was to try to put it into words, was a spectator of my body and life watching a foreign language film relying on subtitles.
I am hoping for a formal diagnosis (referred on 23rd December), but from what I can tell it's not going to change anythign as such, as there's no tablets that directly solve this. By chance (well actually not really chance) I'd already started work with a counsellor who was guiding me through some approaches and techniques to address the things I (we?) find difficult.
And so I'm hoping that will better manage the underlying causes of the depression and anger that I get.

 

[Suzanne]

Oh how I wish I was your age lol

I am a late professional diagnosed female and perhaps the only negative aspect of being diagnosed, is there is not a back door ie just a fad ( obsessions) and got over it and moved to the next one, so to speak; but other than that, it is all positive, because not being someone who looks any different from the average female who are not on the spectrum, at least, due to not feeling like a faker, it helps those who get to know, to not ask if I am diagnosed - whereas before diagnosis, I was so weak minded in saying I am on the spectrum, that it resulted in having dismissive replies.

I don't have family either. Well, to be more correct, do have siblings and a female birth parent, but might as well not!

Wow, homeless to add to your list? That has always been a frightening thought to me.

 

[VictorR]

Sorry about your experiences... many of us go through challenges, and as you've said in a post, it's like playing life on "hard" difficulty and without the manual. For those with intersectionalities, like being a woman on the spectrum, the challenges just multiply.

Depression and anxiety are both commonly heightened for those on the spectrum - more likely to fall into them and also more likely to experience them on deeper levels. It's really important as such to have a support network.

If you're into books and haven't already read them, some that I've read and like are:

Spectrum Women: Walking to the Beat of Autism

Barb Cook and 14 other autistic women describe life from a female autistic perspective, and present empowering, helpful and supportive insights from their personal experience for fellow autistic women. Dr. Michelle Garnett's comments validate and...

www.autismforums.com

The Spectrum Girl’s Survival Guide: How to Grow Up Awesome and Autistic

This essential go-to guide gives you all the advice and tools you'll need to help you flourish and achieve what you want in life. With practical tips on friendships, dating, body image, school, and consent, as well as looking after your physical...

www.autismforums.com

Knowing Why: Adult-Diagnosed Autistic People on Life and Autism

What happens when you make it to adulthood before finding out you're autistic? As A.J. Odasso writes in this anthology: “You spend a lot of time wondering what’s wrong without ever knowing why.” This anthology includes essays from a diverse...

www.autismforums.com

As for the diagnosis question, if you poke around, it's a common topic and there's lots of threads with various thoughts. I'll copy one of my responses from a earlier thread if you don't mind:

Are you in Alberta by any chance? If so, you're in luck as Alberta Health Services offers adult autism assessments at Glenrose. Unfortunately, to my understanding, the other provinces and territories don't offer publicly funded adult diagnoses, and $2000 is about par.

My journey started after reading an article about autistic workers - first being intrigued, and as I got further long in the article, realize that increasingly, that I was being described. It was several years before I got my diagnosis, and while I had on occasion self-identified, it was only after getting the diagnosis that I felt comfortable with identifying, and to start engaging in the community, like this forum. I salute you for having the confidence to step up.

If you're looking at a potential ASD2 diagnosis, one major advantage of getting the diagnosis is that it would significantly strengthen an application for the Disability Tax Credit (DTC) if you don't already have that.

However, it is a tax credit - meaning it can reduce the amount of taxes payable and so if you're not working or working minimally, it may not do anything for you. It is also rather hard to qualify for - someone who is standalone ASD1 who is relatively independent is almost certainly going to get rejected.

I should note that qualifying for the DTC would open up eligibility for the Registered Disability Savings Program (RDSP), which helps with saving and accumulating funds towards "retirement."

See Autism Q and A: Autism-Related Benefits and Taxes | Blog | AutismBC for more links (their blog posts at the end give some more insight on the above).

Something else the DTC also does it open up access to provincial programs and supports, both in terms of direct financial supports (e.g. ODSP in Ontario) or programs/services like discounted transit.

 

[Aspychata]

It was strange to read your bio, because it sounded like mine. I struggled thru different masks and tried to figure out where l belong. However, you learn quickly to function for yourself if your looks cause to much attention. Perhaps with age, you will become more accepting and loving of yourself and welcome to the forum. It will be helpful to hear how you gotten thru so much in one lifetime.

 

[Outdated]

I’ve been homeless, abused, manipulated , used - you name it.

This is also true for me, I relate to a lot of your story, and I like your writing style, I find it very easy to read.

I'm also high functioning ASD2. I started to figure out that I was probably autistic when I was in my 20s but I never learnt anything about it until recently. I was 55 when I got my formal diagnosis, when they told me I was ASD2 I said "I didn't think I was that bad." and they all just smirked at me.

I was homeless for about 12 years, but I did most of that in a remote region in the tropics. It wasn't so much like being homeless, a bit more like being on a long camping trip.

I was always reluctant to take any form of medication unless absolutely necessary, I don't even take Panadol. The one time a doctor talked me in to taking some antidepressants it serious mucked up my whole life and I'm still recovering from that.

 

[330]

Hello and I have lots of information lectures and books I can recommend to help you on your Journey of discovery of who you are .

Also you will learn very much from us here on the forums

 

[Alexej]

Hi and welcome to the Forums @Chameleon In Recovery
Glad to have you among us.

Yes you are right about meeting us and yourself on this forum.

 

[Chameleon In Recovery]

Sorry about your experiences... many of us go through challenges, and as you've said in a post, it's like playing life on "hard" difficulty and without the manual. For those with intersectionalities, like being a woman on the spectrum, the challenges just multiply.

Depression and anxiety are both commonly heightened for those on the spectrum - more likely to fall into them and also more likely to experience them on deeper levels. It's really important as such to have a support network.

If you're into books and haven't already read them, some that I've read and like are:

Spectrum Women: Walking to the Beat of Autism

Barb Cook and 14 other autistic women describe life from a female autistic perspective, and present empowering, helpful and supportive insights from their personal experience for fellow autistic women. Dr. Michelle Garnett's comments validate and...

www.autismforums.com

The Spectrum Girl’s Survival Guide: How to Grow Up Awesome and Autistic

This essential go-to guide gives you all the advice and tools you'll need to help you flourish and achieve what you want in life. With practical tips on friendships, dating, body image, school, and consent, as well as looking after your physical...

www.autismforums.com

Knowing Why: Adult-Diagnosed Autistic People on Life and Autism

What happens when you make it to adulthood before finding out you're autistic? As A.J. Odasso writes in this anthology: “You spend a lot of time wondering what’s wrong without ever knowing why.” This anthology includes essays from a diverse...

www.autismforums.com

As for the diagnosis question, if you poke around, it's a common topic and there's lots of threads with various thoughts. I'll copy one of my responses from a earlier thread if you don't mind:



If you're looking at a potential ASD2 diagnosis, one major advantage of getting the diagnosis is that it would significantly strengthen an application for the Disability Tax Credit (DTC) if you don't already have that.



Something else the DTC also does it open up access to provincial programs and supports, both in terms of direct financial supports (e.g. ODSP in Ontario) or programs/services like discounted transit.

WOW this is all so helpful, and I am in Alberta!!! Just not in Edmonton . Would it be okay to message you?
I really like how you were able to link in all of those posts and how you can respond to certain things I’ve said. I may need to open this up on my laptop so I can get a better feel for how to navigate.
Thank you so so much again for all the help and information

 

[Chameleon In Recovery]

Sorry about your experiences... many of us go through challenges, and as you've said in a post, it's like playing life on "hard" difficulty and without the manual. For those with intersectionalities, like being a woman on the spectrum, the challenges just multiply.

Depression and anxiety are both commonly heightened for those on the spectrum - more likely to fall into them and also more likely to experience them on deeper levels. It's really important as such to have a support network.

If you're into books and haven't already read them, some that I've read and like are:

Spectrum Women: Walking to the Beat of Autism

Barb Cook and 14 other autistic women describe life from a female autistic perspective, and present empowering, helpful and supportive insights from their personal experience for fellow autistic women. Dr. Michelle Garnett's comments validate and...

www.autismforums.com

The Spectrum Girl’s Survival Guide: How to Grow Up Awesome and Autistic

This essential go-to guide gives you all the advice and tools you'll need to help you flourish and achieve what you want in life. With practical tips on friendships, dating, body image, school, and consent, as well as looking after your physical...

www.autismforums.com

Knowing Why: Adult-Diagnosed Autistic People on Life and Autism

What happens when you make it to adulthood before finding out you're autistic? As A.J. Odasso writes in this anthology: “You spend a lot of time wondering what’s wrong without ever knowing why.” This anthology includes essays from a diverse...

www.autismforums.com

As for the diagnosis question, if you poke around, it's a common topic and there's lots of threads with various thoughts. I'll copy one of my responses from a earlier thread if you don't mind:



If you're looking at a potential ASD2 diagnosis, one major advantage of getting the diagnosis is that it would significantly strengthen an application for the Disability Tax Credit (DTC) if you don't already have that.



Something else the DTC also does it open up access to provincial programs and supports, both in terms of direct financial supports (e.g. ODSP in Ontario) or programs/services like discounted transit.

WOW this is all so helpful, and I am in Alberta!!! Just not in Edmonton . Would it be okay to message you?
I really like how you were able to link in all of those posts and how you can respond to certain things I’ve said. I may need to open this up on my laptop so I can get a better feel for how to navigate.
Thank you so so much again for all ththe help and information

Hello and I have lots of information lectures and books I can recommend to help you on your Journey of discovery of who you are .

Also you will learn very much from us here on the forums

I would love that. Thank you

 

[Aspychata]

WOW this is all so helpful, and I am in Alberta!!! Just not in Edmonton . Would it be okay to message you?
I really like how you were able to link in all of those posts and how you can respond to certain things I’ve said. I may need to open this up on my laptop so I can get a better feel for how to navigate.
Thank you so so much again for all the help and information

VictorR has been such a great help at this forum. So great that you picked up on it.

 

[Richelle-H]

Welcome to the Forums. I too was a chameleon for a long time and through nothing more than a bit of serendipity I was diagnosed with Asperger's in my early 40s. The formal diagnosis did manage to save my job in my 60s, but other than that it had little meaning to me.

I think the reason for that was due to knowing that I was different than everyone around me and just naturally fell into being a chameleon. My mother had clues, even tried to get me into therapy when I was around 10, but I was having none of that and she did not persist. SO, I have lived a rather charmed life in that the abuse I lived through, while traumatic at the time, was insignificant compared to the stories on these forums (including your own).

At some point in my middle years I lost the need to fit in and once all the masks fell away, I found a measure of peace in my life.

I hope you find some of the same.

 

[AprilR]

Welcome, i relate to a lot of what you wrote as well. I used to depend on alcohol to socialize and create a different persona, had a history of masking and not understanding my difficulties. Oh and i am also almost 32!

I am sorry that you also dealt with a lot. Not receiving proper help in our younger years was the shortcoming of the society and it resulted in many mental health problems, for me at least. I also feel sorry for my younger self.

 

[Chameleon In Recovery]

Hi AprilR ! Yes I agree. I just finished watching an interview with Gabor Matè and Tom Bilyeu -Nothing about autism but the information about trauma manifesting into illnesses, the first 3 years of a child’s life and how important it is , spirituality, life purpose etc . I really learnt a lot . I’ll attach incase you are interested to check it out. FYI it’s 3 hours long .

I am sorry that you can relate ! I wouldn’t wish that type of pain and hurdles on anyone. I try to believe we were given more difficult lives for a reason. I hope to find that. Hope you do too if you haven’t:
Happy almost bday !

 

[Chameleon In Recovery]

Welcome to the Forums. I too was a chameleon for a long time and through nothing more than a bit of serendipity I was diagnosed with Asperger's in my early 40s. The formal diagnosis did manage to save my job in my 60s, but other than that it had little meaning to me.

I think the reason for that was due to knowing that I was different than everyone around me and just naturally fell into being a chameleon. My mother had clues, even tried to get me into therapy when I was around 10, but I was having none of that and she did not persist. SO, I have lived a rather charmed life in that the abuse I lived through, while traumatic at the time, was insignificant compared to the stories on these forums (including your own).

At some point in my middle years I lost the need to fit in and once all the masks fell away, I found a measure of peace in my life.

I hope you find some of the same.

Hi Richelle- I love hearing that you have found a measure of peace in your life. Perhaps that is one of our goals in this lifetime. “The fish is the last to discover water”
Thanks for sharing some of your experience with me