Autism: Marin's Personal Story

by in Autism, Guest Posts, Kitchen Sink April 23, 2009

By Marin
I was born healthy in NYC and at that time, nobody knew that there was anything different. However, when I was a toddler, I wasn’t walking or talking, nor did I hit any of the usual developmental milestones.
I don’t remember any of this obviously, but my mom tells me. She kept taking me to different doctors (a speech therapist, a neurologist, a physical therapist, etc.) to try getting answers and they all told her that I’d most likely never learn to do anything and wouldn’t be able to go to school.
There were so many times she would cry because she was scared and confused, so friends and family would rally around her and give her strength to do what was needed.
A breakthrough came when I learned sign language, which was either before or during my time at St. Agnes, a special school for disabled children. My mom told me about the time when she put me in the bath and I signed that the water was too hot; then she burst into tears because she could have placed me into baths that were too hot for years, but never knew.
I think I had a lack of self-awareness in the past which prevented me from communicating…so it wasn’t like I couldn’t, but that I never knew how. The understanding was there; it was just locked away until I learned how to access it. Anyway, when I was older, I attended special-ed in Thomas Jefferson Elementary until we moved to Scarsdale, NY, and then I attended Seely Place Elementary.
I made my first friends there and we ended up going to high school together. To this day, I am grateful to the girls from Seely, as well as those from the other elementary school, Greenville, for accepting and supporting me through the years. I loved being at school because my intellect thrived even though I was socially awkward and always felt like an invisible wall separated me from the other kids.
The teachers loved me because I was such a diligent student and my mom made it clear at every PTA meeting that she would not tolerate slip-ups or misunderstandings from them…I think a lot of them were terrified of her! She was like a lioness protecting her cubs. When I was a teenager going through the wonders and hell of puberty, I experienced emotional upheaval and depression due to hormonal imbalances as well as life circumstances, specifically having to do with my self-destructive father.
I idolized him and he hid his shortcomings well for a long time, until he allowed his mental illness to destroy him from the inside out. My only “role model” at the time had betrayed me, so who could I trust? Bitterness consumed me and I blamed my family for not understanding me and not helping me.
There were terrible things I had done during those times that took me years to recover from…I don’t know which was worse, the intense despair and anger, or the haunting guilt that followed every time I thought about the ones I hurt, especially my mom, who’d never given up on me.
One day, I had a panic attack at school during my sister’s lunch hour and she displayed amazing mercy by coming to my aide. That’s when I realized she wasn’t the enemy. If anything, she admired me (and still does) and wrote essays about me that I never even knew about. Now she and I are tight. I went on an anti-anxiety/anti-depression medication called Paxil for about 5 months until I’d emotionally and mentally stabilized.
When I was about 18, I was diagnosed with Asperger’s Syndrome, a high-functioning form of autism and my mom and I researched it together. It was amazing to finally understand why I am the way I am, and to know that there are communities of people who went through similar things and think the way I do.
I graduated from mainstream high school and sang “The Star Spangled Banner” at the ceremony with two other friends. I remember the tears of joy running down my mom’s face, as she no doubt remembered those ignorant doctors telling her to basically give up on me. After graduation, I attended a 3-year program for learning-disabled adults at the New York Institute of Technology out on Long Island and made new friends.
I’m still close to many of them to this day. After that, I moved to an apartment and have been living in it for 5 years. I also have a step-dad named Alan, who my mom married in 2000, and I call him my “partner in lunacy” since we act goony around each other. He tells me stories that he doesn’t even tell my mom because she would think they’re stupid or gross, but he knows I’d crack up at them!
Also, in 2004, I decided to become a Christian (my family is Jewish) because I needed spiritual guidance and redemption that only Christ could give me. It gave me an opportunity to share my life with a community of accepting and fun people, who would love me because of my differences rather than in spite of them. I love them, my friends, and my family who’ve all made such a profound difference in my life.
Would medication have helped?

If a “vaccine” or meds for autism were to come out, I’d give it a shot (pun intended, haha!) just to see if anything dramatic would happen…actually that’s what scares me. I’m afraid that these things would mess up my brain and take away my personality and strengths, as well as my weaknesses. If someone is willing to take that risk, then God bless them, but I don’t know if I would.
Asperger’s isn’t a disease that can or even should be cured…it’s part of who I am as a person. Don’t I have a right to be happy and fulfilled exactly as I am? I know people may think that my limitations get in the way of doing better for myself, but the fact is, I’ve already overcome so much and will continue to do so. People should have more faith in me.
I even tried that gluten-free/casein-free diet that everybody raves about as a “cure” for autism, for about a month, but it was just too difficult (the GFCF waffles and pizza were delicious though!). My mom has regrets about not introducing the diet when I was a child because then I’d have accepted it. I guess that makes sense. I don’t want to look back at the past any more and I don’t like “What if’s”, since they are useless, so the only thing I can change is what I do now. Besides, I always thought laughter really was the best medicine!
Do you have a message for society?
Try to love one another and learn about the differences that make each person beautiful and special. You might learn something new! Don’t take life too seriously and don’t be afraid to be who you are.
God bless!
Related reading:
Autism Awareness Month
Autism: 10 Strategies for Implementing Diet Changes
The Autism Diet Connection
Autism: 10 Tips for Everyone

  1. God bless you Marin! What a beautiful journey you have been on….and yes….just KEEP ON BEING YOU!!! Your gifts are your gifts for a reason…..medications may supress these gifts along with the less loved “symptoms”…
    Interesting idea on the vaccine for autism….hmmm…..I don’t believe that vaccines necessarily cause autism as I mentioned in my Jenny McCarthy rant….but it appears they have some sort of immune/toxic role that may affect people with this particular phenotype.
    Thank you for sharing your amazing story!

  2. Thanks for sharing Marin, and glad you have found the strengths to be who you are. I can see myself in you discovering aspergers and being able to understand self has been the one thing that has helped me, I agree with you its not medication we need but understanding from others, acceptance and allowing our differences. My differences to me are a part of who I am my very core which I call my autism heart, my biggest problem often still is society in general the more I involve myself with the “real” world so to speak, the more stress, conflict and ignorance I find…
    The biggest frustration form children is often communication, understanding breakdown within families i.e Just simply things like…. a child starts new school, sensory overload – no one understands so instead of being dealt with, taken to quite area, gets told off – problem escalates anger, frustration, meltdown… either overloads or totally shuts down and the parent is thinking they have a difficult child, so wrong!
    Parents often want a fix, but we are not broken.. this at times leads to fad treatments of all kinds, often which they can not afford… a treatment that may or may not help and just as likely to help anyone on or off the autism spectrum. For some reason many stereo type us into small boxes, but we are as diverse and different on the autism spectrum as those that are not no 2 people on this planet are like, many variables…
    I guess in regards to autism there are no real answers, does there have to be! It seems everyone has an opinion, but until they have a booker prize or a life time experience like many of us, I like to think those of us on the Autism spectrum are the real experts. If only people in general were more open minded and stop trying to cram us into a person we will never be… embrace us for who we are as we do a right just to be… like you I am happy to be me, the lack of understanding from self and others earlier on in my life caused so much damage.

  3. Well, that rocks, Nee!
    “Try to love one another and learn about the differences that make each person beautiful and special. You might learn something new! Don’t take life too seriously and don’t be afraid to be who you are.”
    It’s good to see someone else who stands up for us!

  4. I’ve not been so vocal recently. Good for you. Miss my old talents…
    Suzaku’s last blog post..Lourdes Moncivaiz is now a member of For ASD Parents: W/ Love from Aspie

  5. […] Articulate individuals with autism firmly defend the genetic piece to their condition. I can certainly see why. If the entire world is continually saying there is something wrong with you, I’m sure if feels great to understand that there are reasons why you’re experiencing the world differently than others seem to be. […]

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