My autism diagnosis journey

This is a bit of a different video and I’m very nervous to share it… but I decided to share it because I think it’s very important, especially for the younger generation.

I was always “different” and autism came into my life when a psychotherapists suggested I got checked for Aspbergers in my mid teens. I share my autism diagnosis story in this video.

When I first learnt about this it was in fact called Aspbergers, this term is not really being used anymore but it is the term I first learned and it feels weird to me saying I’m autistic vs saying I got Aspbergers.

Any questions let me know and your kindness is very appreciated ❤️

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🥀 Follow along

[alecb.]

This is, without doubt, the rawest and most beautiful testimony I have listened to on YouTube. I feel privileged to hear your story and saddened by the lack of support you received. I do not have superlatives enough to describe the courage that it took to post this. You are a bright light in a neuro-typical world.

I suspect I am at the very, very mild end of the spectrum (never diagnosed, but 'different' at school). And I managed to learn coping mechanisms to be relatively effective in the world. I am an extreme introvert and highly sensitive to noise. I learned a lot when going through a Myers-Briggs exercise at work about different personality types (however flawed the model may be): Why did I react 'oddly' in situations others found normal? Why would going to a nightclub at university be anathema to me, because of the overwhelm of the discordant sounds and having so many people invading my personal space? Why is the sound of someone eating, especially something like a apple, like nails being scratched down a blackboard? I will research what you said about masking, as I suspect I have been doing this all my life.

I am very glad you have found the non-judgemental partner you describe. Thank you for sharing this immensely personal testimony. Even being fairly self-aware now (over 40 and having done quite a bit of practise in the Buddhist tradition), I found this helpful to me.

[enchanted]

I am so sorry that you have suffered so much. But you know, you are a LIGHTWORKER. You are shining your light to illuminate the way for others. That is why you care so much for animals and are not materialistic and crave simplicity. It's why you struggle to connect. It is why you have the amazing ability to see through all the conditioning which so much of the human family labours under. 27 is so young. Like the alchemist who turned lead into gold, you will turn your trauma into GOLD. One day, on the journey you will realise that all of this has become your greatest gift and your greatest treasure. Be blessed x

[marymccoy]

My daughter is 3 and is autistic. Non verbal, we’re working on it and she’s doing better. You are such an inspiration my love! I know not everyone is the same but you are making me cry because I have so much hope for my little girl ❤️ my heart is with you and I’ll be looking forward to watching more of your videos… have a blessed day love

[michelle]

Wow, you are beyond brave. Especially the part you said that you had to cater to your parents because they didn’t want to accept your diagnosis. Your vibe is authentic and pure. I’m glad you are alive and strong. Thank you for sharing this video. Your perspective really brought awareness. Thank you 🙏🏽🙌🏽

[michaelshannon]

I cried watching this because I know it too well. The sense of entrapment, helplessness and being absolutely stranded in a world that makes less and less sense with time. My youth was the same - messed up parents, kids just being an after thought, no one recognizing the pain your going through. Btw, I know Swedish ppl speak English really well as a second language but your capacity to articulate your situation so vividly and with such impact would rival any 1st speaker of English. I hope you're finding hope and positivity in your life.

[augustine.c]

Thanks for letting the neurotypical people into your world and experience, your story helps us understand so much better. Praying for your healing ❤

[toni]

i do relate. i was told by my parents im 'always healthy' so i didnt think there could be anything wrong. then the older i got, the more i realised im really different. im now 26, awaiting an adhd and an autism assessment. i have struggled with dermatillomania (skin picking) my whole life. i have dyscalculia- i still cant learn my times tables or do anything beyond small number basic maths. i am also hypermobile. ive been depressed/ anxious all through my life. i really appreciate your video. all the love from scotland x

[TheINFP_Diary]

I strongly relate with your parents reaction to your diagnosis. After i was diagnosed (at 20 years old) and even during the evaluation, my parents were in denial. Even thought they've said to me all my life (as young as 4 in a home video) how goofy, weird, alien, silly I am. Even now after pointing out my symptoms as a lighthearted joke, like how clumsy, lazy, anxious etc I can be, they tell me don't ever use a diagnosis as an excuse for anything. I never have, so i'm slightly confused how I've gone all my light with zero catering from people yet always having to cater to others, then I get an explanation for why i am the way i am, and get told not to use that as an excuse. I want to make accommodations for myself so i can be my best potential, but i don't know how since i'm still living with them.

[ryderyp]

I just want to jump through the screen and hug you 💕

[paramshah]

Thank God I found you. Getting diagnosed with autism as an adult explained all of my childhood and teenage years in one word. It is liberating. Knowing that it isn’t my fault. And yeah I am heartbroken that nobody in my family or friends is actually willing to help or even just understand what I’m going through. But I have my purpose. And at least up until now, my purpose has kept me alive. I don’t know how far I’ll go. But my diagnosis helps me a lot in understanding myself. Really love that you are brave enough to put yourself out there with such vulnerability. Appreciate it. ❤❤

[cweberusa]

You are so brave, this really touched me at a deep level! Thank you for baring your soul like this. My granddaughter is likely on the spectrum, and I am a little bit too. Your unretouched telling about how it was for you opened up another level of understanding.

[cowsonzambonis]

This such a raw video. You deserve all the joy life has to offer; none of this is your fault. ❤

[jcm]

Because you speak the unadorned raw truth, Saga, you will be heard from all those who are not neuro-typical in one way or another : real authenticity is extremely rare and has a way to touch the heart that is unmistakable.
I recognized instantly what you feel and felt as you tell your story. It cut into my heart and gut like no other. Your strength too. It is evident and will serve you well.

My story is different but the same, but I am much older than you. I am so glad that you were diagnosed much earlier than some of us.

My story is that of an undiagnosed Profoundly Gifted child with slight ADD who was diagnosed at 65 years old, by accident, at a brand new therapist's seance. Wow, it clicked, it was unbelievable.

I was raised as an only child by a deeply disturbed narcissistic mother and a Gifted father. Our family was completely dysfunctional, no one was diagnosed, my father committed suicide at age 77 and I am still struggling to handle my 91 year old mother who thinks of me as a scape goat or an excuse to boast, depending on her needs.

She absolutely hates everything I care about and I am bored to tears or horrified by her mental set and behavior. She is untrue and manipulative to the core and I didn't know this at all, for the longest time.

I kept trying to improve to make her happier ! I thought she was neurotic and obsessed with certain things but that she loved me in her own way. It turns out she never has and is not capable of loving or feeling anything for others.

And yet, as often, I still have not managed to extricate myself from her claws because of trauma bonding. To this day, I don't know how I am going to come out of this, despite intensive therapy. To those who read this, if any, I want to tell them that we are darn great SURVIVORS if we are able to tell our story, at whatever age.

I am sooo happy to see someone as young and marvelous as Saga, who has suffered tremendously in her very soul and identity, showing how incredibly resilient and intelligent she is and how well she has managed. Bless you, Saga.

No one ever noticed anything. I was often thought of by my peers as "different", original, impossible to understand, pathologically altruistic and concerned by things that didn't benefit me directly, abnormally intense, abnormally sensitive, completely unpredictable, not from the same universe. How could anyone be so bright in many things and completely incompetent for others ? How could I work so deeply for so long and so hard on certain things then drop the whole thing and move on to something else not even remotely connected or absolutely useless in everyone else's eyes ? Why did I need to be alone all the time ?

Those were fairly often raised questions but no one paid much attention, including doctors and therapists. They probably thought I just wasn't normal, but how and why ?
Of course I was not "normal", you fools !

Depression, anxiety and feeling completely different or disconnected from anyone else has deeply colored my life. I just couldn't bring myself to like what other people liked. I succeeded however, through relentless huge efforts, in creating a false-self that was so successful that even I believed in it. But deep down, I was struggling and hurting and wondering and lost, squandering my potential.

Today no one in my family or among my closed friends understands a thing even though some are trying. It's too much work to try and wrap your head around something that seems incomprehensible and that you never have experienced, even for a minute.
And like you said, no one is really interested in this neuro-divergent topic, unless they are directly impacted. It's interesting, explains a lot, ya, but you know, they have so much more important stuff to worry about. We know this, deep down...And then also, when someone is interested, we just don't find the words, we don't know where to begin...!

I failed quite spectacularly at a couple of things but I succeeded in much everything I undertook for the sole purpose of proving to myself and others my worth. I was so lost and foolish. It almost killed me : the greatest Schools, top level executive jobs at Disney, a great social life and then I was SAVED by a coma.

A burn-out that stopped me cold for a year. I realized that none of these things in my life mattered to me in the least, in fact, I felt aversion for them. I told no one.

My profound two-way healing and love connection with animals probably saved my life as it was the one thing that I never negotiated despite what anyone said or did -- it made me experience pure resonance, selfless, completely unconditional love and how it feels to be received as we are by another sentient being.
What marvel, what privilege.

It made me climb the same mountain over and over again to advocate for animal rights against all odds. I have grieved and grieved many losses, over and over again, particularly the older martyred sighthounds from Andalousia, the galgos I adopted because no one wants an old dog : years of bliss and gratitude and discard of ego; what a relief.

High intensity functioning due to different brain wiring is what it is, and the crazy quest for absolutes and ideals suddenly make sense : we suffer more ? Yes, but we experience profoundly positive and fulfilling emotions too.

I didn't really realize this until I was in Thailand working with elephants that had been rescued in a sanctuary deep inside the forest.
Someone said to me as I was sobbing with relief and clinging one night to the old female elephant that had taken a bad fall that day and that I found to be strong and just fine :"Madame, how lucky you are that you can feel so deeply, so much, so often, such feelings, you cry with deep joy and relief, you cry with bitterness and anguish, you are not afraid to hurt so you dive into love, again and again, we watch you every year, I love the elephants too but I don't feel any of that, I wish I could be like you. You have only met Meta yesterday and look, she breathes in your ear, she is like you, she feels so deeply, elephants are very emotional and often depressed, she thinks you are an elephant but just different body. She knows deep love very well."

I had tried to "regulate" and feel LESS all my life.
Not anymore.

My intense, complex perception of the world and my need to understand were endless sources of joy, interest and battles in a way that I had to keep for myself often but which never failed me : I was unsure about many things but I never doubted my values and will die with them, no matter what tradition or cartesian logic or worldwide norm say. That, in and of itself, is worth being neuro-divergent because we SEE what others can't.

I never fully recovered as my nervous system was out of service and complex post traumatic stress symptoms started to kick in.
I continue to strip my life of all that was imposed upon me, including what I imposed upon myself. You are so right, how to tell who we really are after having absorbed so many behaviors from a neuro-typical society ? Well, we did what we had to, and we are here, alive, able to talk about it. After all, living a "hybrid" life like this is unique and has expanded our interest and understanding of human nature. You are young and you will discover much more about your core identity and needs, and way faster than older survivors like me ! Read more good books about Aspi women, books are so revealing, as you have found !!!



You will do a lot with that wonderful person that you are : the world needs you because it is poor in all the gifts you were born with.

Your parents were dealing with issues that absorbed their entire attention and I wouldn't be surprised if one or the other or both had narcissistic tendencies : the obsession with oneself first is common and denial too but the inability to accept something because it doesn't fit into one's "perfect" image of one self and of one's life is a very typically narcissistic thing. If they really saw you as a perfectly normal little girl, they were just believing what they wanted to believe. If they lied to the therapists, same thing : what matters is them, not you and you felt that intensely.
It probably couldn't be helped : what people don't see, they don't see, and when they don't want to see, they will do anything to deny it.

I wonder if the fact that, in swedish culture, the importance of not standing out or making oneself more or less than others hasn't played a role in the whole apprehension of things by your parents. Perhaps they couldn't stand it because they felt it reflected badly on them ?
You explained that particularity very well in one of your videos, if I'm not mistaken.

Thank you for this sharing, it matters a great deal, Saga.
Thank you also for all your videos. Your light is so bright and natural that it cannot help but soothe and motivate people.
🤗❤️

[Brooke-jgie]

Literally crying with you. So often parents are unsupportive and just can’t stand the idea of you not being normal despite the fact they call you quirky and different every 2 minutes. I similarly couldn’t understand why I was struggling and at my darkest time luckily found autism as a reason that I’m not crazy that the things I do aren’t weird they are just me

[kentecklund]

Hi Saga. Your video is good because it shows how you're figuring things out. My mother was a hoarder. I grew up not having a place to host friends. I'm 66 now. I have forgiven my parents. Parents are just real people with flaws, often not knowing the right things to do. It's hard to forgive them because of the cruel times I had, but I also had beautiful times with them. My parents loved each other. They weren't perfect but I think they were trying, in their own way, to do the right thing. They gave me the gift of life. Now, because of them, I can walk the Earth and experience the beauty of it all. For this one reason alone, we should forgive, move on, and respect our parents. You will be set free and be a better person.

[rachelb]

Your story made me very sad. I’m so sorry it was so difficult. I was recently diagnosed with Asperger’s. (Early 40s) Ironically, I saw a video on YouTube and realized I related to all of it. I’ve always felt different and was picked on a lot. I thought my difference was from childhood trauma. I struggle with so much now especially after not having to mask during Covid. I question who I would be as well if I didn’t mask. The part where you said we see our strengths by choice was interesting. I’d never thought of that. I’m becoming much more aware of my difficulties and trying to make allowances for them instead of being hard on myself. Sending you virtual hugs.

[Christinchong]

Thank you for sharing your story with us. I'm sorry to hear that your parents were not supportive, and I hope you are able to surround yourself with supportive people now. I look forward to watching more helpful videos from you about minimalism and beyond.

[LisaMorrison-rymc]

Wow! I felt like you were describing my life, except for me it was depression and adhd. I was always told to "change my attitude" and that I was a " bad person" because I was so emotional. I was never told that my feelings were okay or asked to talk about how I was feeling. I felt the same kind of pain. No one understood me and no one wanted to try. It's still with me to this day. People who don't feel depressed just can't seem to accept that it's a real thing....and that it's very painful. With adhd, your mind has such a hard time focusing, you start 10 things at once, you walk into a room for one reason and leave for another....The worst part of that is I have a terrible memory, always have, and it hurts me in every type of job I've worked at. My family is always trying to tell me how to do things better; they just don't understand that my mind works differently from theirs. I'm so happy you have found a loving husband who understands and cares so much about your journey and I hope you feel stronger every day!

[edith.therese]

Thank you for your video, I really cried with you. I have a very similar story as yours, and it encourages me a lot to see someone like me surviving and sharing experiences.

I am also autistic (diagnosed when I was 18, now I am 22) and had a difficult childhood because of my abusive parents. My father was/is mentally ill, and was very abusive. My mother was/is also mentally ill, and because she had to take care of my father, she didn’t have any time or interest in me. They always blamed me existing, and because of my traits as an autistic child I was always bullied at school. I tried to kill myself twice between my teenage years, and I’ve never thought that I will be able to have a normal life.

Now I don’t live with them anymore and I am studying at a foreign university, also I have a supportive family (they are not my biological family, but they treat me as a daughter), supportive friends and boyfriend. But still I’m spending extremely hard time accepting myself being different from others, because I’ve felt always very guilty about it. There are many things I can’t do, like socializing, and also I get often panick attacks or I start crying. Like you said I also have hypersensitivity towards sounds and lights, which also cause panicking.
But as you also said, there are some things I can do very well. I have very good intuition, am very good at playing instruments, learning languages (which helped me escape from my family), and noticing small emotional signs of others. I’m happy about it, because with this skill I can support who I love so much.

Though I am still having tough time, I am thankful for having a new opportunity to make my life happier and make myself happier.
And I thank you so much for sharing your story, because it made me feel that I am not alone and there is you who is caring for me (though we don’t know each other, it means A LOT to me) and saying that I’m not crazy or worse than others. It was my first time that I can entirely feel understood and accepted, and can feel a connection with someone.
Thank you so so much.
I send you a lot of love❤️

Therese

[lellachu]

I'm sorry for how you have suffered. You are such a beautiful person inside and out.

I was diagnosed with ADD in my teens, and I remember taking the number test and the administrator being so surprised that I was finished and saying he'd only seen people "like Rain Man" score so highly. This was a few years before Asperger's became a popular diagnosis, so perhaps, a few years later, I might've received that diagnosis. Still, I can see that I've not struggled nearly to the degree you have, and you have my respect and admiration.

I have a daughter who reminds me of you, and you've inspired me to be more compassionate and patient with her when I feel like she is being manipulative or rude or when I'm confused or annoyed by her differences. Thank you, and God bless you for sharing.