Have you ever had a significant change in diagnosis? For several years you were following information, therapy, and treatment specifically for one diagnosis… it seemed to serve helpful for the most part… but it persistently felt like something didn’t feel right… it wasn’t adding up.
Perhaps that something was the medications that had negative side effects… the therapy was helpful, but you still felt like there must be more that can be done to help you feel better. I understand this feeling is hard to put into words, so we’ll refer to it as: The Big Question Mark.
Between the ages of 31-to just this last week, age 37, I was following treatment for Bipolar 1 Disorder (along with the comorbid diagnosis of ADHD & PTSD). It was my previous Psychiatrists recommendation that I seek out someone who is experienced with Autism to address that diagnosis being a more accurate explanation for the cluster of behavioral symptoms I have, but for now, the symptoms led us to follow the path of treatment for Bipolar Disorder (as well as ADHD & PTSD) as that made the most sense to his experience in the area of the mental health field he worked in.
Since moving here to Utah, I did find someone who is very experienced in helping patients with Autism (also referred to as “ASD” – Autism Spectrum Disorder). We went through some screenings and tests and that is where we are today. The Big Question Mark has now started to fade within my mind and I feel a great sense of relief. This diagnosis seems to be the better fit by far.
I’ve begun my shift in studies to my now revised diagnosis of: Autism (ASD)-Aspergers (“Aspie”), PTSD, and ADHD. The new professional I am working with feels that there may be more clarity yet to discover in regards to the ADHD behavioral symptoms as we continue treatment for the PTSD, but the Autism-Aspergers seems to stand as quite clear.
Honestly, it feels like I have new lungs. I’ve only just tapped into understanding Autism-Aspergers and so much of it registers in a way that helps me feel so validated. I felt that way when I was studying Bipolar Disorder and why such sudden shifts in mood, but there was always that lingering feeling of there being more answers out there to discover that would give me the full picture of an explanation of “Why?” to how I was feeling each day.
I was feeling, even with all the validation that came from understanding ‘big swings’ of mood in Bipolar, the major highs, and the extreme lows… I was still feeling frustrated with my “too sensitive” nature… why did my symptoms change significantly with different environments? With certain sounds? With specific triggers?
Why did I feel so overwhelmed with social gatherings, and so much pressure to participate in everything – with everyone- and I had this anger build up inside that I felt terrible about, because I wanted these people to know I love them, but when I try to show them in the way they’re wanting and expecting, I feel those angry feelings build up inside me. The kind that makes you want to crawl out of your skin and scream at the top of your lungs,
“I DON’T LIKE THE WAY I FEEL – BUT I LOVE YOU ALL SO MUCH!”
Now I understand that is part of the Sensory Issues in Autism. Those sensory issues, along with others like:
- I am uncomfortable with long hugs. I don’t mind a quick hug, but when it lingers I freak out inside. I don’t like being held.
- “Normal” (Neurotypical) people are exhausted after running a marathon, I get physically (and emotionally) exhausted after socializing with a group for a few hours – even if it was just us ‘hanging out’. When I get back home – all I want to do is rest and ‘check out’ for the rest of the day.
- I prefer socializing in groups of 3 or 5 people, or a reasonable size that can easily sit in a circle where everyone can see each others eyes and hear each other. It’s when it’s larger where everyone is having their own individual conversations and people spontanesouly show up to my side to talk to me when someone else is already talking to me that I just lose it inside my body. I hate those circumstances (but I LOVE the people! – see my dilemma?).
- I prefer my home, my ‘safe space’ where I feel in control. My safe world which usually extends about an hour distance beyond my house. Beyond this point is where anxiety shows up that makes me feel like I’ll be trapped, I can’t easily run back to my house if I wanted to.
- I prefer having a plan, knowing what to expect. This is why I like my daily routine, and when it gets disrupted significantly, it takes a great deal of mental effort for me to get back on track. This is why committing to plans outside of my routine makes me anxious, disconnecting from my regular day-to-day norm feels significant to me.
- I do not like surprises. It doesn’t take much to startle me – make me jump in my seat or where I’m standing. I feel like I touch the edge of heaven every time I get startled (haha).
I know many people mean well when they plan surprise gestures that define an expression of love for them (the way they would like love expressed to them), but if it’s any bigger than a small gift left on the door step or a small surprise unnannounced gift that fits in my hands, I just have a hard time understanding that gesture as non-threatening. I feel like hell is crawling up through me when those BIG gestures suddenly show up unnannounced. Predictability is what defines to me as safe.
When people have told me I’m “too obsessed” – to calm down and do more simple things to better enjoy life— like getting out in nature and ‘have fun’… it’s the ASD part of me that doesn’t understand what they mean by “have fun”, or “smile more”. It’s those well-intentioned sentiments that pressure me to “mask” so they don’t get upset with me, it comes from the Autism-Aspergers. I don’t understand a lot of social norms. I genuinely don’t understand why so much of it seems to matter to people, or why people feel like it’s a “have to” in order to “properly” be human and happy. What does it have to do with “living life to the fullest” – that we all ‘have to’ do the same things? I understand that it can be meaningful gestures to others – but the “have to” social pressure that seems to extend to all of us, does not make sense.
I’m genuinely happy in a quiet room surrounded by people who don’t feel obligated to interact – we’re all happy curled up reading a book, like at the library – or a museum.
I’m happy with my older – mismatched decorations in my home. Our ‘barely holding it together’ couch… I’m 100% content with anything from A Dollar Tree, probably to the same level of gratification as someone who was handed keys to a Rolls Royce car 🤷🏼♀️.
I prefer my older-well worn-out clothes to brand new stiff clothes, and I don’t care that they’re old. They feel comfortable, and that’s what I care about.
I’m happy going on a long walk outside in a quiet neighborhood with my dog Henry, probably to the same level of contentment and gratification as someone who feels happier flying to Hawaii for vacation.
I’m happy among animals who just want to ‘be’ in the present moment with me, who look at me and are just happy to see me – the REAL me, not the version of me that better fits the majority rule of society and social expectation. I am happiest when I can just be ‘me’ with no expectations for me to show up in a “pleasant” way.
I’m happy doing these quiet activities, I’m happy gathering in small groups where everyone can see and hear each other without any overlaps in chaotic sounds. I feel most comfortable and safe, at complete ease and relaxed in a controlled, calm environment.
In these small groups or by myself – I trust that others love me, even if they’re not in front of me—with me. It’s the social expectations and expressions stated out loud like “if you love me you would” that overwhelms me and drives the insecurity I wish wasn’t there. WHY do we have to do these social things in order to be a loving human? Why can’t we just know that we love each other, present or not present in person? That when we do get together – it’s like ‘bonus love’. Why can’t “bonus love” be normal?
My sincere “obsession” about Brain Health & Behavioral Health, rooted as my strong interest – turned- hyperfixation, was born out of my best effort & strong need to survive socially in this world. If I don’t yet understand what the world deems “normal”, and my behavior is defining their understanding of whether or not I like or love them— because they matter a great deal to me, and if I were to give in to my real desires of what I really would prefer to do personally (stay at home, or stay in my ‘safe space’) would risk them assuming I don’t love them or that I must not care, then how do I not “obsess” over devoting my research and career to mastering the skill of understanding what it means to “properly” be human? Learn what I feel *I need to change* to ‘fix me’ so I can ‘fit the mold’ better. I’ve been trying my best to come to accurate understandings since I first began reading ‘big kid’ books in Elementary School, ordering books, borrowing from the library, and reading books in book stores all about behavioral health and self-improvement and psychology, and I STILL do not feel like I fully understand humans. I’m still terribly anxious about ‘messing things up’ in my interactions with others.
Many in my life have told me I take things too seriously and I worry too much… but how does one not worry when they are being looked at as not loving, because of how they honestly feel – and that feeling is considered “wrong” in this world? I honestly feel exhausted socializing in this world that expects me to show up in ways that often overwhelms my mind and body, and I cannot expect everyone to always live by what defines my comfort levels. We need to meet in the middle… but how?
Understanding this new diagnosis, which is a significant part of me, validates me in a way I’ve needed my entire life. Like many others out there in the “Aspie” world that I’ve listened to since I received this diagnosis, I wholeheartedly support their advocacy to the world to please help us.
PLEASE help us.
Nobody should ever feel like they have to destroy their health in order to make others comfortable.
Love does not equate to mental and physical pain.
Love equates to accepting others as they feel safest showing up, be it words only, listening to music with them, arts and crafts – creating something together, or a physical embrace when in person. Love is knowing that others are doing the best they understand how, and we love them as they are and not what we expect or want them to be.Love is honoring each others honest feelings, with quiet and gentle respect.
– Becky Cooper
Please consider opening your minds to better understanding us – because our impulse to try our best to change to accommodate your comfort levels by feeling a need to “mask” is literally destroying our health as we have sincerely tried our best to change ourselves to feel like we can survive this world – a world strongly dominated by a criteria of “normal” that has been harmful to people who ‘look normal’ but don’t behave ‘normal’. This is not an excuse to be ‘lazy’ or a ‘cop out’ because we don’t care. We do care.
… sometimes we care too much.
For people like us, feeling like we have to, metaphorically speaking, sit in water that is lukewarm to you – but feels like boiling water to us, does not help us enjoy the activity we feel obligated to be a part of – thus making it incredibly challenging to be able to be fully present with you in the way we want to.
If we look like we’re “doing so well”, think of how it feels to hold in a big sneeze, or suppress a strong urge to cough… does that feel comfortable? We’re doing a good job of ‘holding it in’… it doesn’t mean we’re “doing so well”.
Our brains are fundamentally and literally built different than yours. It is not a competition of who has it worse, if you’re thinking we want to feel these emotions in such an overwhelming way so often – we don’t!
Autism is a neurodevelopmental disorder that affects social skills, communication deficits, and disruptive repetitive behavior. In addition to behavioral deficits, autism is characterized by neuropathology and brain overgrowth.
So much of what all of us humans feel in this world, is turned up SEVERAL notches for people on the Autism spectrum. It literally HURTS us. The solution isn’t for us to “snap out of it”, or be told we’re just making up an excuse because we must not love you.
The solution is for us to feel safe setting boundaries, that when we say “no”, we’re not looked at as making up excuses or not loving you. We need a safe space to have a sincere and genuine safe choice. When we feel safe, and believe that we’re safe and can relax and be our ‘true self’ unmasked, and we have a voice to safely express “we’re done”… we feel far more comfortable stepping out of our comfort zones.
When we feel understood, we feel more comfortable getting curious and trying new things.
If you want to help, get curious with us. Learn about us, because we have dedicated so much of our sincere hearts & minds to understanding the world as you experience it. The majority of people in the world aren’t like us. We’re the minority, so we have no choice if we want to be actively part of this world. The least anyone else can do while we’re trying out new medication, new types of therapy to cope with this world dominated by ‘Neurotypical minds’, is help our community feel less pressure to destroy our health to “sit in hot-boiling water” so people don’t have to feel uncomfortable around people like us.
There has to be a solution to where we can peacefully and lovingly co-exist and neither of us feels a need to fundamentally change who we are & what makes us feel safe and honest and true to our needs in order to find that comfortable middle ground. But it takes BOTH sides being willing to do the work.
Here is a playlist I have begun piecing together for those who feel more comfortable learning visually & audibly. As I continue to learn and gather information to better understand myself & my community, I’ll share more in future posts. 🙂
If you find this post meaningful to you, please feel free to share it with others. 💚 If you are also connected to the “Aspie” or Autism world and have thoughts of your own to add, please add your comment below! 🙂
