Writers Of Autisticana Interview: Living With Autism – “Your Struggle Is Your Story….”

By Cara DiFiore, Jackson Beach, Rachel Green, Danielle, Nicole, Scott Weisbrot, Elliot Gavin Keenan, and Ava Gurba, Akilah, and Steven

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100th Blog Celebration!

This topic has been on my mind and I thought this would make a great blog for all to see, and to educate typical people on how neurodivergent people are so creative and bright and need to be heard and seen.

Dr. Grimaldi and I have decided to interview people at Autisticana and others about being on the spectrum, and what it means to them. We are all so very unique, special and different, so we wanted to explore our feelings and those people similar to us.

Being on the spectrum usually refers to a specific set of developmental and behavioral problems. The challenges associated with autism means that you can be affected in some way with communication and social, learning and interactive skills. Most articles and research are written and researched by professionals in the field and parents of children with autism. We as adults , living the experience of being on the spectrum, want our voices to be heard. We are the true ” Lived Experiment” and now, it is time for society to hear our voice and how we really feel. We have been told all our lives how to feel and how to be. So now, we have decided to start a monthly article discussing topics and calling our work , ” A Chorus of Autistic Voices”, so that society can really learn our perspective. I’ll share my story first.

Cara

I didn’t realize about my autism, until I got into my teens. I remember noticing my behaviors and traits. I took a quiz to see if I was on the spectrum. Although I was diagnosed at a really young age, so I don’t remember anything from that day. So I just believed in the diagnosis, and have had to live with it most of my life. Throughout my school career from preschool to high school, I was always placed in special education. When I was little I was okay with it , but once I got to my teens I was starting to feel embarrassed because I didn’t want to be in that class, and I felt like I was going to be made fun of for it, which in the end, luckily didn’t happen. Even though I was never bullied by kids, I wanted to fit in and be treated like everyone else. I still do to this day.

In middle school I was kind of a different person; I was a lot more like an introvert. I also always had a hard time relating to most people. I didn’t have a lot of friends, and didn’t feel like I belonged anywhere. I felt awkward everywhere I went.

I always felt ashamed about my autism and other things about me for a long time. Once I reached high school, I started to come out of my shell a little bit. I started getting more involved in more things and made some more friends, as I was starting to be less shy. I also met another special person in my life who is now my boyfriend.

However I still was dealing with struggles like poor self esteem, mental health, perfectionism, and ableism. I did my own research and learned what the world ABLEISM means, which is discrimination against people who are disabled invisble or not. I felt like I fit into that category. However those experiences made me the person I am today.

I now no longer feel ashamed of my autism. I’m grateful to have people in my life who appreciate me and to be apart of something really special like Autisticana, where we are all like minded, support each other and educate others.

My advice for anyone would be to not be ashamed of who you are, treat yourself the way you would treat others, be who you are meant to be in this world, and go after what you want.


Jackson

Being autistic is really great because it has allowed me to learn many different things about the world and has caused me to discover different types of music and interests and make great friends. Growing up, I went to Just Kids which was a preschool for kids with special mental needs and disabilities. However, once I entered public school, I was placed in regular standard classes rather than classes that had special needs kids. This made me feel like an outcast deep down as well as angry at myself whenever I got in trouble with other people, especially my paraprofessionals. I also struggled with issues such as hyperactivity and not paying attention at times. Despite that, I did participate in the SOAR program (Support Our Autistic Rainbow) of my school district from first to eighth grade. However, I was still able to make great friends and had fun in all my classes. My school career with autism changed significantly when on the last day of seventh grade, I was offered the chance to join the ICT two teacher classroom program. I agreed and my school career changed for the better as I made many new friends, even in people I had met before but never truly interacted with. I also saw my grades improve significantly, especially when I reached high school and was able to do extremely well in English and Social Studies. I also joined outside of school activities such as Sangha Education Center and Kidz Helping Kidz, where I bonded with other neurodivergent teens. Upon reaching college, I feel like my autism has helped in making great papers and projects. Throughout my life, I have realized that autism is a gift, not a burden and it has allowed me to make many great friends, whether at school or Newsmakers.


Rachel

I never realized I have a disability. I’ve felt left out with family than in school with my peers. Before my mom and stepdad got married, I felt left out because she was paying more attention to him than to me. I was upset and I would read romance novels in my spare time. It gave me a sense of hope that one day that could be me. When It came to school it made me feel bad that I was taking longer to graduate than other kids. I had a lot of friends in school and felt supported and my teachers were helpful as well. I liked to learn about science in school because of its science fair. I never felt disadvantaged compared to my peers. In regards to driving, I wish I could drive and I don’t like I can’t do that. I feel left out because some of my friends can drive and I can’t. I would like to have my own place away from my parents. If I had to say anything to those who feel bad about their disability it would be that we are each different in our own way and don’t feel bad about it.


Danielle

Growing up I never thought I had a disability, I always thought everyone else had issues, just not me. I owed this to my parents who never treated me differently, and gave my brother and I chores to do. We were both expected to do our chores. In school I had to deal with difficult kids more troubled than me and I had to learn to wait my turn and figure things out. Sometimes I needed help but I couldn’t get it. I’m now grateful that I found a group of friends in Autisticana who love and accept me for who I am. I always remember the times I had with Pop and remember seeing him through the window while sick. I’ll always have that memory with me.


Nicole

Since I was young, I have had a hard time speaking to people and I had a hard time paying attention in class, as well as hearing what the teacher was saying, As I got older I had a hard time trusting people, because I experienced a bad friendship and it made me feel less confident and trusting with others. I think being autistic is something I’m proud of because it shows that I can be intelligent, despite all the emotional and physical issues that have occurred to me.

Even if you do have a disability you can be whatever you want to be. For instance, I really enjoy using my creativity and imagination to help others by writing meditations and creative visualizations for all to experience. Life gets difficult some times and we need a little break in the day. Practicing meditation and creative visualizations allow us to experience a mini vacation in our mind. This also allows us to breathe deep, to oxygenate our system, and to relax our thoughts that may make us anxious.

I am happy I learned how to channel my creativity into helping myself and others to launch and just be, for working together we can all enjoy and be who we can be!


Scott

The time when I first noticed my Autism was the time when I was in elementary school. I was placed in a Special Ed group during most of my time. However, I was placed in a mainstream class in specials and some subjects because I thought it would help me learn how to interact with the other kids. I noticed something different was my classmates were having conversations and I only spoke a little amount. I was more interested in interacting with them during PE Class because it was about having fun. I often felt upset because they only wanted to focus on each other and hang out or be with other partners without me. I sometimes had a hard time keeping the conversation going because I wasn’t sure of saying what I wanted to say. I passed my Global History Regents in a mainstream Global History class. I often got upset over not going to a friends party because I felt bad finding out on social media that they were at parties and didn’t invite me. I got better with communication and I passed my road test on my first try during the end of my teenage years. I became more independent after I got my drivers license. I got two major awards at school. I participated in Sports activity like school and Special Olympics. I was on the Varsity Bowling Team, the School Track Team. and also helped out on the Boys Varsity Soccer Team. As I get older, I just realize that having Autism was more of a Gift because It shows my special type of interest and my own sense of view. I’m also grateful that I get to have my friends and everyone at Autisticana.org which makes me feel like its family.


Elliot

I was diagnosed with autism when I was six years old and I do remember the moment the doctor in a white coat let me into his office for the first time and I discovered that the dark square in the room I’d been playing in was a one-way mirror, and all of my “playtime” was actually being observed. I was in adaptive gym classes for most of my life and today I am not able to drive a car even though I am 26. Even though these are obstacles for me, autism has always been a gift — a gift that was misunderstood by others. I was able to read before I could speak and I believe my autism is a reason why I was able to complete my PhD at UCLA. However, despite being tested with an IQ score in the upper extreme, I was not invited to partake in the gifted programming at school due to my disability and I was late entering honors classes. I was bullied because I was clumsy and obsessed with Pokémon, and because of bullying and untreated ADHD I often did not want to go to school. I did well on tests, but I could not pay attention during classes and did not turn in homework. Because of my high educational attainment some people doubt I have any serious struggles, but I have been hospitalized in a mental hospital over 20 times. Those that know me best know that autism is a part of who I am (the good and the bad) and plays a role in my personality too, like my sense of humor.


Ava

I didn’t learn I was autistic until I was 15, but I always felt like there was something different about me. In my early adolescence, I was searching for any explanation for why I just never seemed to fit in. At 13, I learned that as an infant I had cerebral palsy. It explained why I physically couldn’t keep up with others, but I still felt like an alien on a distant planet. Everyone seemed to speak a different language than I did, but the words themselves were not different. It was how language and social connection being built. I always felt behind in some abstract global way.

In high school, the social pressures just became too much for me. I was having meltdowns, and at this age, it was not considered appropriate. It led to my eventual diagnosis with autism. At first, I felt like a completely broken person. Everything you read about autism when you google it talks about our deficits, our inability to be part of the larger social collective. I didn’t feel like I knew how to connect with the friends I had anymore. What I was learning actually made me feel worse about myself.

It took me several years, but eventually I found strong connections with other autistic adolescents and adults. I found solace in the neurodiversity movement, a social movement for the acceptance of people with different kinds of minds. I was no longer speaking this different language; we spoke the same. I could feel what I knew inside all along: being autistic was always a beautiful part of my identity.


Akilah

As someone who has autism, I have never felt bad about my disability because whether or not I have it is something that is out of my control and makes me unique as an individual. You can control as much as you can and you have to let the rest go.

I have always felt different from other people ever since I was born,. The day I was diagnosed all made sense to me and I was a bit relieved because it allowed me to make strategies to combat any ill feelings and resentment I felt against myself and how society may have viewed me. Instead, I was able to find tools to make positive strategies to make my life the best it could be under my circumstances. I don’t feel bad about not being able to drive because some people with disabilities cannot do so and there is no shame in that.

At school I was picked on and bullied which made me feel annoyed and isolated, but I took karate classes and defended myself whenever someone bullied me. I turned my isolation into being a great creative artist and I have learned to share my gifts and innate talents with the world. Through all my sacrifices and struggles, I have built up great resiliency and have learned appropriate coping tools while meeting like minded friends.

With the Newsmakers Club and all my great friends, I don’t ever feel left out because I feel safe and secure with all of them.


Steven

All throughout my life I’ve had a tough time socializing with other people. It is definitely not easy for me to have conversations with strangers. I always get a little bit anxious whenever a person asks me something when I’m out in public. There are times when I’m afraid to say anything because I’m afraid it might not be the right thing to say. There are certain sounds that I am very sensitive to, like the sound of a phone that is on speaker, or loud TVs, or some beeping noises. Also, my brain tends to process some things slower then other people, so if too much information is coming at me at once I can get overwhelmed, especially with all my autistic sensitivities. However, brain processing speed and intelligence are two different things.

I am an intelligent, honest, open minded young man who just wants people to accept all of me. I appreciate those caring, compassionate neurotypicals who are are willing to understand what it is like for a person to have autism. I appreciate neuro-divergent people like Christine Grimaldi as well.

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Dr Grimaldi’s Takeaway:

In my experience, people with autism are beyond amazing. They all have their own unique special interests and priorities that are important to them. Special interests can mean many different things.

It could be a highly specific topic of conversation they wish to discuss, a tangible item that is particularly important to them, or maybe it’s an activity they wish to engage in without interruption. Examples of this are Pokémon competitions, Marvel, Disney, politics and so much more .

People who do not have autism that attempt to disregard their special interests are not able to truly reach that individual. It’s the special people who use that individual’s “priorities” to engage with them who receive positive and meaningful interactions.

A perfect example of this is the TV show Love on the Spectrum, which shows you that the couples on this show truly engage with each other when they have the same interests. I personally disagree with “opposites attract”.

I actually think that similarities are what engage relationships and keep them sustainable. People with autism are exceptional in that they are fearlessly and authentically themselves. Our societal norms do not affect the individual’s agenda to fully be themselves.

This can be off-putting for those who do not understand or appreciate this. Unfortunately society discriminates and looks at these wonderful kids as an illness to be fixed, when in reality they are truly a blessing that is ostracized by society which causes them mental health issues.

There needs to be so much more education and awareness so society can evolve and unite as a team.

With awareness, one can truly see the beauty of an autistic mind. The uninformed believe these individuals need to bend, adapt, and conform to fit into their society. I have met so many individuals to know that it is not them who needs to bend. Starting this wonderful blog at Autisticana has proven how these kids have worked together to build a bond, and doing so allowed them to really develop their communication skills effortlessly.

They have dedicated their work to advocating for themselves and have really learned amazing skills, such as sharing their stories, learning to creatively write, learning how to advocate as a team, and to accept everyone for who they are. They have also learned what it is like to be a mentor and a conscious leader.

Most of all they have learned to express themselves for who they are and to share their gifts with the world.

I am so proud to be their coach, their teacher, and their friend.

This is our 100th blog and today we celebrate their greatness. This has been the toughest year for me.

Through my baby sisters’ terminal cancer diagnosis, the murder of our beloved mascot Molly due to poisoning on a farm and Airbnb’s negligence, and through having my own surgery from this tragedy, we have not skipped a beat!

I am a resiliency educator and this year has proven the truth strength we all have.

Out Motto now is ” Teamwork makes the Dream Work”.

I am so beyond proud of my team at Autisticana.

We continue to publish our first ten books and tools to empower all to join us. We are also in the process of finishing our ar , yoga and writing retreat center in beautiful upstate NY, where all these like minded young adults can create and transform this world we live in for the better.

Thank You to my beautiful team at autisticana.org and the Newsmakers in honor of my mentor Barbara Walters, who taught me to critically think, investigate with appropriate evidence, and to keep my heart open while staying resilient at all times.

This year has been very sweet and sour and yet we all have proven to make lemonade out of lemons.

We are growing rapidly and hope to be nationwide soon.

Please come join a team who is going to sweep the nation.

If just one person shows compassion then just maybe it will cause a chain reaction…that person is me.

With love and grattitude,

Dr. Christine Grimaldi

http://www.fuelholisticenrichmentcenter.com

A group of all of us. Can you tell who has different wiring?
Stay tuned for our next blog, Neurotypicals vs Neurodivergents: What does it all mean if anything?

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