neuroCon
neurocon Our StoriesThis Was My Past Decade
This story is to illustrate the VITAL IMPORTANCE of early diagnosis. help recognize the signs and symptoms for what they really are, and CHANGE the public perception of Autism so that we CAN DO THAT.
And since my personal story has not yet come to a resolution, I decided to use this space to try and get help. I’ve shared this story via email to as many lawyers as gmail allows me to send, which in a week should amount to most of NYS. I’ve shared this with as many of my ex husbands family via social media and email and asked them to please send it to the rest of the fam. Pretty please with sugar if you are reading this may you share this EVERY FRIGGIN WHERE too. Fr. Please help me get to my kids. Anyone know a lawyer, apartment owner, friggin investor, a resource, the goddamn news, SHARE WITH THEM. And then- share with your friends too just in case they are secretly struggling with what might be Autism.
Once upon a time in the late 70’s, I was born. It’s hard to tell a story from two perspectives, but that’s what I have now.
When I was 46 I found out I am autistic. Between birth and rebirth, some really upset things went down. For a long long time. KNOWing I was autistic would have meant a very different life, and that is a mourning process that I think all late diagnosed people go through. But in my case, I am mourning a lot more than the usual.
I have to assume that I am not alone in the extremity of my story, and there must be so, SO many more people like me out there- SUFFERING hard- with no idea why, or what to do about it. Trying HARDER not knowing that its the TRYING harder that dig their hole. I still don’t know exactly what to do about it… how to get out of the hole. But I decided that if I needed to make a means for myself- I may as well make a means for others that need it too.
I am homeless.
Still.
I have been staying on my friends porch for over a year now. But don’t let the word “porch” get you down, I’ve made myself a lovely perfect cave of comfort out here. But I am far, far from home, and I do not know how to get back.
How did you get far from home?
How do I even say the story without sounding like a complainer? Don’t get me wrong I’ve complained and screamed at God and the sky and I’ve fucking cried. But the complaints- that’s not what this is about. So take the storyline as the facts necessary to understand the rest. This is happening to people that canNOT make a website. And we’ve lost millions of people that did NOT have a support system.
It was a decade long burnout that I didn’t know I was in. In hindsight, like my whole life, there were so so many very clear signs that could have been taken care of. I wouldn’t have been living my life the way I was in the first place I suppose. If I had known what I was feeling, was not what people meant when they said stressed, If I had known what I was feeling was WAY above and beyond what the average fella was experiencing when they said “I’m so stressed out”….
Autism Life Expectancy Stats
the British Journal of Psychiatry documented that adults with an autism spectrum disorder who have a learning disability are 40 times more likely to have a lower average lifespan due to a neurological condition than adults in the general population who are not on the spectrum and have no learning disabilities.
Furthermore, the study found out that adults with autism who do not have a learning disability were up to nine times more likely to die by suicide than adults at similar ages who did not have autism.
In this study, people with autism spectrum disorder tended to die at age 54, which is 16 years sooner than the average age of mortality. Adults who have both autism and one or more learning disabilities died almost 30 years sooner than people who had neither, at an average age of 39.5 years old. Those with autism, but no learning disability, died at an average age of 58.1
What Autistic Burnout ACTUALLY is
It was a decade long burnout
Well i’ll tryyyy to leave woulda coulda’s behind. Woulda coulda done EXACTLY what I did- with what I had and knew at the time. I do not feel guilty anymore. To be honest the things leading it would have been enough to take out a stress free neurotypical person. I did too good of a job. Went too long. Tried too hard. That statement is the reason for most of the problems in my life, and I still, knowing all I do now, have a hard time with justifying- “Try less”.
I guess it goes well with my Autistic Archetype. I lived the genius overachiever perfectionist path. I don’t even feel comfortable saying “high masking” because I didn’t know I was masking or copying or transforming myself for whomever I was with. It is not even instinctual- it’s automatic and unstoppable without total personality reformation.
Whether you are neurodivergent or not- PLEASE understand this about Autistic masking
When a human child is forming their personality, they are summing up their experiences and traumas- to make a survival mechanism- which is basically how to deal with other humans- which becomes the friggin personality. Masking is made THEN. You cannot just say- “Be yourself.” There is not one. Yet.
More On Masking
An “autism mask” can begin to form in early childhood development, often starting around the time a child becomes aware of social expectations and feels pressure to fit in, which can happen as early as preschool age, but can vary greatly depending on the individual child and their environment; it’s not a specific age, but rather a process that develops over time as a coping mechanism to navigate social situations.
Key points about autism masking in childhood:
Coping mechanism:Masking is primarily a coping mechanism to avoid social rejection, bullying, and feeling different.
Early signs:While not always obvious, some early signs of masking might include a child trying to mimic others’ behaviors, avoiding eye contact, or suppressing stimming behaviors to appear more “normal.”.
Social pressure:Masking often becomes more pronounced as children enter school and face increased social pressure to conform to peer expectations.
Individual variations:The degree and timing of masking can vary significantly between autistic individuals due to factors like personality, family dynamics, and social experiences.2
Henry Ford Health On Masking:
Unfortunately, if masking becomes part of the person’s daily routine, it can create new problems, including:
- Delayed diagnosis: Suppressing certain behaviors that aren’t socially acceptable can lead to delayed diagnosis for a subset of children, particularly those who only have mild autism—and that means they won’t receive needed care.
- Burnout: “Hiding autistic traits can be emotionally, mentally and physically exhausting,” Dr. Johnson-Hooper says. “When kids with autism use all of their energy to suppress and to hide their authentic selves, there’s nothing left for making social connections, learning and creative thinking.” Over time, that intensity of focus can lead to stress, irritability, anger and burnout.
- Mental health challenges: Studies suggest that adults who camouflage autistic traits are more likely to suffer from mental health issues, such as depression. It’s important for people with ASD to feel accepted by the external world and to find community.3
Somewhere around 9 years old, when I went to the “special gifted school”, I realized I was not only weird but I was the weirdEST of the weird. My dad had heart attacks that year. I remember the change in me from my non reaction to his hospitalization. We had to go to school the next day, and my friend asked me a regular how are you… she stopped dead in her tracks and started to cry when I told her what happened that morning. I remember feeling like her reaction was a surprise, but realizing that it was my reaction that was wrong. The mask was born that year. And until last year- I did not know that ME wasn’t even me, and I sure didn’t know the toll it was taking. After all, everyone is stressed. Life is stressful.
My teacher that year, Dr. Rosemary Callard went on write and teach about 2E (Twice Exceptional) students and their particular difficulties. Read more…
- Even if a student performs at grade level, 2e students are overtaxed. They often use their gifts to compensate for their disability or underperform if their disability masks their gifts.
- Developmental asynchrony often results in anxiety and depression; students may feel deficient despite having incredible intellectual strengths.
- When combined with sensory overstimulation and impulse control issues, children may experience behavioral challenges in the classroom.
- With proper support, 2e students can reach their potential, become shining stars in their classrooms, and be amazing future contributors to society.4
Description
Rosemary Callard-Szulgit, EdD, is an adjunct professor and the current field coordinator for gifted studies in the graduate online gifted certification program at the University at Buffalo. … Google Books
Important Info For Parents- Is Your Child “Gifted”?
… Perfectionism is a multidimensional personality disposition that is characterized by striving for exceedingly high personal standards combined with overly critical self-evaluations (Hewitt and Flett 1991). Guidebooks for parents, counselors, and teachers frequently highlight perfectionism as a core characteristic of intellectually gifted students (e.g., Callard-Szulgit 2012;Henderson 2009;Porter 2005;Silverman 2013;Sisk 2009). Thus, unsurprisingly, perfectionism is described as “one of the most common concerns of parents and teachers of gifted children” (Wilson and Adelson 2018, p. 8). …
Resources
- https://elemy.wpengine.com/autism/average-lifespan ↩︎
- https://www.autism.org.uk/advice-and-guidance/professional-practice/autistic-masking ↩︎
- https://www.henryford.com/blog/2023/04/autism-masking#:~:text=%E2%80%9CWhen%20kids%20with%20autism%20use,%2C%20irritability%2C%20anger%20and%20burnout. ↩︎
- https://www.php.com/twice-exceptional-support-info/ ↩︎
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