Ableism, “But you don’t look sick!”

Oh how many times I have heard this, “but you don’t look anxious.” or “What’s wrong with you?” obviously since I have a service dog something is “wrong” with me. I try not to complain about my symptoms with family around, the tension, the tingling, the tightness in my chest, the fluctuating heart rate, and other symptoms that can make me feel really bad. As I lay down from my heart acting up I worry about bystanders thinking that I am “dying” or in need of medical assistance. If I didn’t need a service dog I wouldn’t have one, it’s no joke, it takes a lot of time, money, and training to have a service dog.

Many others struggle with this and chronic invisible illnesses. “But your walking, and talking, and doing stuff!” well, we are, but at what cost? How many spoons do we use up just going to small social event? A lot. For some it can take days to recover after doing something as simple as a shopping trip.

We also hide our symptoms, because we do not want to “burden” others with talking about our struggles. or because we don’t want negative comments “If you would just do x and y you wouldn’t have this problem!” or “You’re too young to have that issue!”. If we aren’t in a wheelchair, or on oxygen, or using a cane then we must not be sick. Some have to go through so many doctors and medications to try to find answers, some are successful, others may not find success.

As of right now I will be going to a primary care physcian to have this heart issue checked out, it fluctuates between 90’s and 100’s even when I’m just sitting down. It’s exhausting really as it takes up a lot of my spoons.

So please, next time you see someone with a service dog, or someone tells you they have a chronic invisible illness, believe them. You may not be abe to see it, but they feel it. In a world where you can be anything be kind, because the world can always use more kindness.

Blessings in Disguise, disability and a romantic relationship

The first day I met him was in a special needs/disability church group. He seemed nice, and so I friended him on Facebook. 

We started out with small conversations on messenger. 

Slowly yet surely we evolved to video chatting. Our first date was at the movie “a dogs way home”, I enjoyed the movie throughly and it was a great date ❤️.

Slowly I began to have feelings for him, feelings that I don’t usually have for other people. When he would hold my hand I would feel tingling go up my spine, to be honest I was quite worried at first what was this feeling? But after a while I started getting used to it.

Today I have a promise ring that reminds me he will never give up on me. I love him so much, I don’t care if he is autistic and has cerebral palsy, He is perfect for me. 

We just click on so many levels on the things we have gone through in life. He accepts my autism assistance/medical alert dog Nikki and doesn’t judge me for my medical episodes. He worries about me and makes sure I am ok.

The little good morning messages mean so much to me, he spoils me rotten 😂, and I wouldn’t want to be with any other man in my life. I’m hoping and praying that If it’s God’s plan that we will one day get married. 

For now I want to soak up and enjoy all my time I get to spend with him ❤️, thank you bae for making my life better, I love you so much!

Why labeling autistic people is so damaging

I’ve seen the different kinds of autism labeling. “Autistic people are egocentric and it makes it difficult for friends and family to be around them”, “High functioning”, “Low functioning”, “selfish”, “Intellectual disability”, “Repetitive behavior”, “Restricted interests”, etc. So you may be wondering, what is so damaging about these labels? Here are the reasons why.

It puts down autistic people’s struggles, labeling an autistic person’s stimming as “repetitive behavior” does not validate that the autistic person is trying to cope by stimming. It implies that there is something wrong with the autistic person. It causes an autistic person to feel bad about themselves, we already try so hard to cope and it can take so much work for an autistic person to be able to move forward and achieve goals, and to say an autistic person is “egocentric” is extremely hurtful.

A lot of time autistic people have too much empathy, we do not lack empathy. I have empathy and can feel the same feeling of empathy towards another person as others do. Another thing labels can do is cause an autistic person to lose their identity, their sense of purpose, and shutdown. I myself have gone through this recently. As in someone telling me that I’d be “Scared to death if they found a cure for autism”. It became so bad that I thought about deleting my blog.

Instead of labeling why not try to help autistic people, why not accept us as who we are? Many of us have strengths that the world needs. Temple Grandin mentions that many autistic’s work in Silicon Valley, if we didn’t have autistic people in the world, we probably would not have the technology and ideas we have today. Albert Einstein was autistic, and he made great contributions to society.

I’m tired of ableist remarks, I’m tired of hearing “You shouldn’t be proud to be autistic!” I’m tired of hearing the labels. And I’m tired of people trying to control my beliefs and saying I shouldn’t believe in neurodiversity. I believe in neurodiversity because I believe autistic people should be accepted, I believe that autistic people have been on earth longer than we think and that we are here for a reason. I do believe that some things need assistance such as supportive friends, treatment for anxiety, depression and other comorbid conditions that come with being autistic. But I do not believe that we should be using labels, I think we should ditch them!

Each label I will throw into the fire. I am not “High functioning”, “Low functioning”, or “Egocentric”. I do not have an “Intellectual disability”. I am who I am, and I’m proud of it! I’m proud of the goals I have achieved in life and I will continue to work towards those goals. I am #autisticandproudofit!

Labels damage autistic people, ditch the labels, autistic people deserve better. We are humans too! 

The Painful truth about being an autistic adult.

The painful truth about being an autistic adult is that I struggle,

Others don’t understand how much I struggle, if I’m having ameltdown, it is considered to be a “Tantrum”, “Stop crying!”, “You can help it!” I plead with them “Please, just let me have space!” but I’m not allowed to leave the situation because it’s considered “Rude” and “You need to stay till the end”. Once I’m allowed to leave, I go up to my room and curl up into a ball and hyperventilate, all I can do is feel the anxiety taking over my body, and I have no control over it, it’s scary. My back becomes painfully sore from breathing so fast and so hard. My eyes turn red from all the crying, my throat becomes sore, and tears drip silently down my face.

I have to go to Costco. I’m not allowed to bring Nikki, my autism assistance dog because we are shopping and “She will get in the way”, “She’ll shed in the car”. (Nikki sheds but she does get brushed and does have baths). As I go into Costco I become overwhelmed by all the sensory stimuli, my vision starts to blur and zoom in and out, I start to feel that disconnected feeling. I am able to *tolerate* the trip, but it leaves me feeling anxious. All I could feel during the trip was being overwhelmed, all the people moving, carts rattling, bakery equipment beeping, checkout scanners beeping, people talking, all the TV’s with same settings playing, it’s all so overwhelming.

“Oh you’re high functioning”, my nephew he is much lower functioning then you”. I hate being labeled. I HATE it. I may appear to be “high functioning” in the view of Neurotypicals. But I’m not high functioning when I’m having severe anxiety, I’m not high functioning when I am in a meltdown from anxiety chemicals being too high, I am not high functioning when I am so overwhelmed by sensory stimuli that I have to retreat to a quiet spot.

When my little sister asks “What is autism” it’s explained in high functioning and low functioning terms.

When I try to explain that something hurts my ears, others laugh

When I say I have anxiety, I get “You don’t look like you are anxious”.

Sometimes when I am in a social situation I can’t talk, or I don’t know how to start small talk with someone. And I start feeling alone, but at the same time I don’t know how to fit into the social conversations.

The painful truth about being an autistic adult is that at times, you will struggle, at time you will feel terribly alone, but even though I go through this, I will not give up. I am stronger than the stigma surrounding autism.