Autistic 🔥 Burn Out 🔥

2011 was when I first spoke out for something that I believed in.

I was tired of the false information that was being spread about autism and vaccines. I knew the affect that Pertussis (Whooping Cough ) had on me . ( a torn chest muscle, the coughing spasms that made it hard to take a deep breath, needing an inhaler )

I knew that whooping cough makes Babies (infants) really sick.

I know Autism is NOT caused by Vaccines.

I feel that vaccines are important because they protect Babies , People who are immune compromised , Vaccines protect Elderly People and Disabled People who are high risk and can’t get the vaccinations

Vaccines protect our Communities.

I Hated the fact that risking a preventable disease like Whooping Cough and spreading it to people who could die from it was something that people were willing to do because they didn’t want their child to “become “ Autistic.

Autism is not caused by vaccines.

In 2015 state budget cuts that were being threatened scared me. Again I used my voice to speak out about something that was important to me.

Cuts & Caps to Medicaid, Cuts to programs that provided early intervention for kids diagnosed with a disability, Cuts to the programs that had helped me.

No Budget Cuts

Over the next three or four years making trips down state, attending conferences , Being a board member, Meeting with elected officials really kept me on my toes.

There was a lot of information about the effect things like budget cuts would affect on programs. I tried to come up with creative and visual ways that had an impact .

Protect our care

I know there is a lot of talk within the autistic community about autistic burn out . I know it’s not just autistic people that feel burn out.

Fall 2018 into early 2019 was when I first felt burnt out. Like a turtle I wanted to crawl back into my shell. I felt overwhelmed and like I couldn’t keep up with pace of things. Advocacy was something that I knew was important.

It was hard for me to say NO when there was an event within the community or meeting with lawmakers. I felt like I was letting people down and I knew that there were other self advocates who would have loved to have been in my position as a self advocate.

I’m grateful for the self advocacy opportunities that I’ve had. 2019 & 2020 have had a twist to them but, I’ve had a lot of personal growth and I’m finding my niche.

Processing .Autism

In 2019 my family found out that my Dad had Esophageal cancer. Chemotherapy and radiation came before surgery. This was all new territory. Uncharted waters that we had been thrust into.

My dad with great determination and positivity endured each treatment. He definitely would rather have been golfing or tinkering with small engine repair.

Health

The unexpected hospital stay because of a Pulmonary Embolism was difficult.

In November of 2019 my dad had surgery to remove the tumor that was in his esophagus and to construct a new esophagus. (From part of his stomach)

Eating before the surgery was hard and eating after with a smaller stomach has been a bit of a learning curve.

I read a booklet about pre and post surgery information. I read about the different chemotherapy drugs and their side effects. (There was one chemotherapy drug that stopped the process of cell division called mitosis ) I learned about how the surgery would work.

I took care of my Dad when he was having a bad day. I tried to think about what helped me when I wasn’t feeling well and used that knowledge to take care of my dad.

In 2021 my family lost a woman who was like a Grandmother to us. I’ve experienced loss before I still react in the same way.

There are still so many questions that I that have about death and dying. Like a toddler I ask questions about “Why. How, or what”.

Both of these situations show how I process things. They show the empathy I have , the I learn about something unfamiliar.

For the past two years almost , I’ve been doing counseling every two weeks. There’s nothing weird or shameful about talking to a professional about how you feel.

It’s not always easy talking about how you feel but, It can be very helpful. There are great things like writing , music or art that can be great in helping to express your feelings.

This is a month that is dedicated to Autism Acceptance. While this isn’t a typical post like one might see I feel like it’s important because, It sheds light on something that other people may experience.

Their experience may be different but, there are still some parts of the experience we may have in common. That common ground can be helpful.

Tell me you have autism without telling me you have autism..

1 in 54 children will be diagnosed in with Autism Spectrum disorder.

I am 1 in 144 females that is diagnosed with Autism Spectrum Disorder.

First grade

I don’t remember the appointment where I was diagnosed. When I met with the Doctor I made eye contact and I smiled. Because of those social skills that I used I was diagnosed with Aspergers which is now considered Autism Spectrum Disorder.

As a child I was very shy. My classmates answered questions for me. My teachers thought that my Parents were doing my homework for me!

I could express myself and I was smart.

In fact I’ve always been a little gifted with hyperlexia ( the ability to read at levels far beyond those expected for their age)

I’ve always been very nurturing whether it was a pet or a baby I’ve loved providing care.

I don’t think that this is something that people realize can be a strength. There is still the misconception that autistic people can’t be independent or care for others.

My Clay mask

I’m a creative person

Writing, Photography, Sketching are some of the ways that I create.

The clay mask that I made is a good depiction of what Autism Spectrum can be like for females.

As a child while I was shy and my classmates spoke for me at school , at home I talked, I giggled. I was a different person.

Autism spectrum behaviors in females are different than males. That makes it harder to diagnose.

These are only a few signs of autism spectrum in females.

Physical pain is something that I feel differently

When I was in 3rd grade I broke my foot in two places I walked on it for over a week. When I am in pain I put up with it for too long. (It’s not interfering with my ability to live life) It gets to the point where the pain builds and becomes too much. I get frustrated and sad.

I trust science and medicine

I’m happy that I have received both doses of the covid 19 vaccine

In 2020 I got my TDAP vaccination. I’m happy to do my part by getting vaccinated so that I can protect those who cannot.

Vaccines DO NOT cause autism!

In 2010 I had whooping Cough. I know how important vaccines are and how they can make a difference.

Herd Immunity +Vaccinations = I grew up

I feel that it is important to share about who I am. There is a lot of diversity among Autistic people.

I’m not the same.

Though each experience and person is different. My experience and what I write about can help other people.

Integrity to a role

This is a photo from a film by a music artist that was nominated for two golden globe awards.

The “actress “ played the role of an autistic person.

Why is this wrong?

She Does Not have autism!

Disabled Actor’s and Actresses’ should play the parts of Disabled Characters!

Thanks to the way this actress inaccurately portrayed a disability Stigma and harmful misconceptions now are what people see when they look at autistic people.

It’s hard enough for autistic people to have jobs or work, have friendships or relationships , or Be social without these barriers.

It doesn’t accurately show who we are or what we experience.

Sensory sensitivity is not something that is fun. It’s not something that makes us look unintelligent as the picture from the moving portrays. For me it’s a time where I want to get out of that situation. I have to listen to music or take a walk.

I’m a self advocate & advocate

I’m Creative

I participate in Special Olympics and have fitness goals

I’m good at training dogs

I’ve written all of these blog posts

When I was younger I was very shy. I had classmates who talked for me. I had teachers who thought my parents were doing my homework for me!

At home I was a different person I talked a lot.

I found my voice

I still am finding out who I am as venture further into life. I like who I am and who I am discovering.

Autism does not look like this film or this actresses’ portrayal of it.

Autistic characters need to be played Autistic Actors.

I want to see someone that brings integrity to a role because they’re autistic.

We can’t have acceptance or understanding of autistic people if people continue to “speak “for us

Listen

We are capable

DD Awareness Month

March is developmental disability awareness month. Autism is a developmental disability.

Playing with peers , gross and fine motor skills like writing your name and skipping or jumping rope are some examples developmental milestones that we’re supposed to reach as we grow.

Occupational therapy, Physical therapy, and speech therapy are some helpful ways to help reach or provide adaptions for these developmental milestones.

Autism doesn’t impact my intellectual ability, my humor , my ability to care or love.

There are things like driving and 👀perception that it has an effect on.

It is frustrating there are these milestones that are impassable or that are reached later than your peers.

I can run. I can do jumping jacks. I can lift weights.

Twisting open a bottle cap, Slicing butter with a knife 😂, and Drawing were things that I was having trouble with because of joint pain.

It was frustrating! Thanks to exercises that I’ve learned things have gotten easier.

It reminded me of the exercises that I used to do when I was younger and some of the frustrations that I had.

Developmental Disability Awareness month and Autism Acceptance month are important.

Our stories are important!

The good. The bad. What is easy and what is a struggle can all have an impact.

Day nine

Day nine asks for some “words of wisdom” that speak to me.

“I’m still learning “ -Michelangelo at age 87

We’re never done learning. It’s something that we do throughout our lives. Learning and trying something new, accomplishing goals. These are a few things that regardless of age we are capable of doing.

“Study the art of science. Study the science of art. Develop your senses. Learn how to see. Realize that everything connects with everything else. “ Leonardo Davinci

I feel this deeply. When you develop a passion into something like art or writing it overflows into other areas of your life. You find various ways to live your passion. Knowledge provides you with better insight . You share that insight and the passion with others.

“What is done cannot be undone but, one can prevent it from happening again” -Anne Frank

These words of a young Anne frank are a bold reminder that what we have the power to change tomorrow. We’re living in a time following the Jewish faith still results in anti semitism ( hate and violent acts that are committed) It’s been decades since the holocaust. Acceptance and religious freedom are still battles being. This is just one example of the past repeating itself. Racism and Disability rights are also wars that we still wage. The past teaches us. We need to use the present to learn from the past and to create positive change. The future has a lot of possibility. Let’s remember the past and change tomorrow.

Everybody is a genius . But if you judge a fish by it’s ability to climb a tree, it will live it’s whole life believing that it is stupid.” -Albert Einstein

I know a lot of disabled people. Hard Working, Talented, Athletic are just some of the ways these people shine. Everybody regardless of disability has strengths and weaknesses. If you judge someone based on what you think their IQ is or their disability you’re not seeing the success’s they do have or the knowledge that they possess. How a person communicates is not a measure of their knowledge or ability. 🧏🏽‍♂️🤳🏾🤟🏽

“If you want to live a happy life tie it t goal not people or objects”. Albert Einstein

I’ve always had goals I have wanted to achieve. When I was younger I really wanted to be a nurse. My math skills made that not possible. It’s taken me longer than most to find work that I could do continuously and that I enjoyed. This has given me the opportunity to recognize strengths that I have and to work on my weaknesses. While the path that I’m on isn’t one that I pictured myself on, It’s a path that introduced me to things about myself that I would not have otherwise discovered and I’ve set goals (running races) that challenge me, have helped me to grow into the person I am today, have given me a sense of accomplishment and made me want to work harder!

“Two roads diverged in a wood and I -I took the one less traveled.” Robert Frost

This is from a poem but , I feel that It is important. We don’t always end up what doing we imagined in life. The different path that we’re on allows us to see or do things that we would not have done otherwise. It allows us to meet people we might otherwise not have met. It’s path that might be scary or hard to go down if it’s not something that we imagined. It’s a path that we can really enjoy.

“Our live begin to end the day that we become silent about things that matter” Martin Luther King J.r.

Humans have rights. We don’t always see eye to eye on these rights. Disability,Race, Gender , Socioeconomic status and sexual orientation are just a few of the reasons that people have to fight for their human rights! For people fighting for human rights the struggle may be different but, that doesn’t make it any less valid. It’s important to stand up for what is right. It’s important to choose actions that are good. Using your voice is a very powerful thing. Your story can have an impact. If you don’t speak up about important rights nothing will change. Change happens when you make that impact.

Life full circle

Autism is a Developmental Disability There are skills at certain ages that you are supposed to be able to do.

I had trouble with things like skipping , doing buttons and snaps,tying my shoes .

To help my fine (small movements ) and gross (big movements) motor skills improve I did physical therapy (big movements) and occupational therapy (small movements).

I learned how to grip a pencil the correct way, I learned how to use scissors . I did things like pulling beads out of therapy putty and working on my balance by hopping on one foot.

Therapy scissors

Everything was made into a game so it was fun. The things that were hard ( tying my shoes, skipping, jumping rope, balancing) were things that I practiced a lot!

I definitely got frustrated! There were some of the things the friends could do that I could. I couldn’t button blue jeans or tie my shoes for quite some time . I didn’t have the upper body strength to do the monkey bars . (The monkey bars and doing pull up are current goals that I’m working towards.)

With practice I was able to accomplish a lot!

Life sometimes has moments that bring you full circle.

Recently I started doing occupational therapy again. My dominant hand that I use for, opening a carton of milk, squeezing out toothpaste, typing , drawing and much more was very sore.

It was difficult. I missed drawing and I like being able to do things independently.

I have been learning new exercises that help my hand.

I have advocated for myself. I’ve had to describe what the pain is like. (Achy, & sharp and burning) I’ve had to describe what activities are hard.

Some of the exercises that I have been practicing are exercises that I use therapy putty for. No beads this time. 😃

I have been able to draw thanks to practicing the exercises and a new pencil grip.

It is frustrating when something like skipping or tying your shoes does not come easily.

With practice you can tie your shoes or skip.

You are capable!

With practice comes progression.

STOP the “MUSIC”

There is a new video out with inaccurate and dramatized portrayal of autism spectrum.

Music

This has a lot of autistic people very irate and fearful.

1. An actress plays the part of the “young autistic woman

There are autistic people who self advocate and who have a passion for acting that would of been a great fit for this role!

You Can’t simulate an autistic person’s experience for a movie or a tv show with someone who is NOT autistic !

A Disabled Character in a movie or a TV show should be played by an actor / actress that has that Disability!!

2. Stigma Continues

Autistic people still heavily feel the stigma that developed from the FALSE report that autism was caused by vaccines.

An autism diagnosis became something that was feared.

Autism isn’t always easy!

Meltdowns ,

Stimming / Regulating ,

Sensitivities ,

And Anxiety , Depression or Trauma are just some of the things Autistic People experience.

An inaccurate portrayal of the experiences that Autistic people have is harmful!

3. Not every Autistic person has the same experience

My life. What I have gone through. The skills that I have learned and use. My strengths and weaknesses . The relationships I have. There many different things that contribute to my authentic autistic self.

4. Helping Autistic people, Breaking stigma.

For situations like meltdowns that Autistic People have there are right and there are wrong ways to help an autistic person who is already in a fragile state. Saying or doing the wrong thing can escalate an already tense situation.

Meltdowns and stimming are moments that are sometimes very public. They cause to pause and stare. Peers may bully because what they see and don’t understand is something that looks funny or entertaining.

The dramatized and inaccurate portrayal of these moments that an Autistic person has creates stigma and providing the wrong type of help for a meltdown is like pulling an object from a person that has been impaled. It HURTS them!

These are just a few reasons why OUR experiences and OUR voices matter!

Nothing About us Without us!!

Using my platform

462,000 people have died

That number grows with each passing day

There is hope!

23 years ago a study came out that was falsified. ( falsified means the information the study was edited to make seem true) This study was on Autism and vaccinations.

This falsified, untrue study caused parents to panic and stop vaccinating their children.

herd immunity (people that can get vaccinated being vaccinated for those who can not be ) declined.

Growing up with cyclical vomiting syndrome, abdominal migraines, migraines, and precocious puberty I had my fair share of Doctors Appointments and Hospital visits.

I had trust in the Doctor’s and nurses who provided care for me. I had trust in the medication and treatments that heloped me to feel better. I had trust in science.

From the time I was a baby to the present day I have received vaccinations.

As a baby before I was even vaccinated there were signs of autism that were evident.

When I graduated from high school I didn’t go of to college like many of my peers. I missed the vaccinations that college students get.

I was smart & creative but, I lacked the confidence, determination, & independence that I have now.

It was hard for me to advocate for self at my Dr’s appointments.

2010 is a year that I will never forget!

That was the year that Pertussis aka Whooping cough. I tore a chest muscle from coughing and needed an inhaler.

Had I gotten whooping cough as a baby there’s a chance I might not have survived. I was lucky! I was vaccinated.

I’ve felt the effects of preventable disease.

My experience with Whooping cough and knowing that autism is Not caused by vaccinations fired something up inside of me

I knew my experience with whooping cough though very unpleasant could have been a lot worse. I didn’t want anyone else to have to go through that.

I knew that vaccines DO NOT cause autism!

I wanted to change the stigma that surrounded autism.

There is hope that is on the horizon.

I feel that it is important for me to use my platform.

When it is my turn I am getting vaccinated.

I trust in the science. I trust the Dr’s and Nurses.

I know that there are babies who are too young , people who have comprised immune systems, or people that are older who rely on people like me who can get vaccinated

My story has the ability to impact people. Maybe even change someone’s mind.

I feel that it’s important for me to use my platform to change a negative perception into a positive one.

Day Eight

Something that I struggle with is dating and friendships.

I’m shy sometimes when I first interact with people. When I’m comfortable with people is when I relax.

It’s hard for me to read body language and facial expressions. It’s hard for me to understand tone from text or message. I worry that people see me as a child and incapable.

I want acceptance and I want love\romance

I want to impress , I want it to work out.

I Love who I am.

I Love who I was then.

I Love who I am now. ❤️

I don’t drive and I still live with my parents.

Those are two minuscule things in the grand scheme of things.

I have independence in a lot of other ways.

I have a good sense of humor.

I have goals.

I’m nurturing and loving.

I’m good cooking.

I excel at writing, sketching, painting .

Dating in the modern world (i.e. using apps to swipe left and swipe right in the hopes of finding a date) is something that frustrates me.

My life is pleasant without the added stress to the struggle.