Voices of Autism: My Story

Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. While all the stories thus far have been written by parents of children who have autism, today’s story is by Marc Rosen, a 22-year-old who has autism and writes about growing up with the disorder. He is the co-editor of Perspectives: Poetry Concerning Autism and Other Disabilities.

selfpicI’m not the parent of an autistic child, nor even a parent. I’m a single 22-year-old autistic gay man, and thus unlikely to ever father a child either. However, because I’ve been where your readers’ and contributors’ kids were, they may benefit from what I have to say. It is a tale of pain, but many endure far worse on a daily basis just by being in an institution or group home.

Unlike many of the kids you’ll hear about in this series, I wasn’t loved and supported from the get-go. The kindest words that parents in the community, including my own mother had for me when I was five were “freak,” “monster,” and “abomination,” though my school’s faculty tried to shield me from this. My first suicide attempt was at age 9, motivated by a belief that not only did I not have the right to exist, but that I had an obligation to “correct the mistake” that was made by my birth and continuing to live. These attempts continued for another five years, my life spared from a combination of clumsiness and my desire to not get caught by someone who might try to “save” me. Nobody even realized I had been suicidal or depressed until I was fourteen and had a nervous breakdown in the men’s room at school.

The subsequent intervention forced me to consider the future I previously never wanted. I was being over-medicated and over-controlled in every way, and was forced to teach myself various aspects of law, education theory, and psychology that led me to being mistaken for a teacher candidate in college, just so I could protect my education from sabotage. Even then, I had to deal with constant threats of talks of forcing me into an adult guardianship, and gleeful rants about shoving me into a group home from my mother despite the fact that I was well aware of the dangers of such facilities, where government oversight is non-existent and abuse runs rampant. By the time I was done with my first year of college, I had moved out of my mother’s house permanently, and moved in with my father to protect myself from her wrath. To this day, I haven’t forgiven her for what she’s done.

After moving out, my life dramatically improved. I actually managed to have friends, became involved in my region’s poetry community, coedited an anthology of poetry about autism and other disabilities–which got submissions from four continents–and have garnered a formidable reputation in the fields of autism and disability advocacy because of the book, my work at conferences, and my political endeavors.

For me, being autistic has always been part of who and what I am, like being gay or ambidextrous. It was never an excuse, or a reason why I couldn’t do something. If you can gain anything from my story, I hope it is that your kids can and should find a way to empower themselves, and it’s your job to guide them there. Your success will be measured not in all the things you do for them, but in all the things they do without you. Regardless of their cognitive impairments, social skills, executive dysfunctions, toilet training issues, or other trifling details, if you can get them motivated and self-empowered, that is the real key to making sure they realize their potential.

To read previous stories in this series, click here. For instructions on how to submit your story, click here.

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  1. by Spectrummy Mummy

    On April 21, 2011 at 7:09 am

    This is such a heartbreaking story, and sadly not such a rare one. Thank you for your brave honesty. “Your success will be measured not in all the things you do for them, but in all the things they do without you.” Amen to that. Thank you for sharing your story here, this is what Voices of Autism is really about.

  2. by Red Shoes Autism Blues

    On April 21, 2011 at 7:38 am

    My heart goes out to you. I am so sorry that you endured such hardship. I too was drawn to that sentence. “Your success will be measured not in all the things you do for them, but in all the things they do without you.” It says so much. It reveals truth like I haven’t pondered in a while. Thank you for sharing your story.

  3. by Floortime Lite Mama

    On April 21, 2011 at 8:51 am

    Thank you for sharing your story
    Its heartbreaking and yet affirming – I feel so bad for all that you went through and my
    Heart breaks for you –
    I worry about all the autistic children in the hands of parents who dont care – and who dont have your abilities to break the cycle of abuse

  4. by Niksmom

    On April 21, 2011 at 9:34 am

    Marc, thank you for sharing your story. I am thankful you were not successful in your suicide attempts and that you have been able to turn your life into something meaningful and important. I was also especially drawn to th sentence about success. It speaks to the heart of the battle I fight with my son’s school as well.

  5. by Alysia

    On April 21, 2011 at 9:40 am

    Thank you Marc for choosing this forum to share your story. It’s a story that we all need to read – parents and non-parents – about how we chose to treat the people in our lives. I’m grateful to you for this.

  6. by Jen

    On April 21, 2011 at 10:27 am

    I am happy for you that you have found a good place in this world. Your last paragraph is exactly what I believe for my child, and I am so grateful that you shared your story.

  7. by Dragonslayermama

    On April 21, 2011 at 10:31 am

    Oh Marc, I am so sorry for the horrors you endured. You are a brilliant, courageous, gifted person and you should be so proud of all you have accomplished on your own. A neurotypical child would have enormous challenges in the face of such maternal neglect and abuse ( I’m very familiar with that) but to do it with autism – my dear, you have super powers. I’m in awe of you. I wish you a peaceful, happy life. You deserve nothing but love, honor, and respect. Thank you for bravely sharing your experiences with us here.

  8. by Puzzle my heart

    On April 21, 2011 at 2:26 pm

    As I sit in tears, I realize it may be for the sadness in your story but more importantly, it may be that I am happy you are still here to tell your story. I appreciate your honesty and I know your bravery will save lives. Thank you.
    “Your success will be measured not in all the things you do for them, but in all the things they do without you.”
    And I am now going to paint your quote so I can hang it on my wall. I’ll be sure to give you credit! Haha

  9. by Lesley

    On April 21, 2011 at 3:09 pm

    Marc, congratulations on making it! On never giving up on yourself! Thank you for telling your story so that others in similar situations will know that they are not alone and that there is someone else out there who lived the same fears, pain and cruelty. I pray that someday your mother will realize how wrong she was to treat you that way and beg your forgiveness because you are a special, beautiful soul and the world is a better place with you in it!! Keep strong and God bless!

  10. by Melissa

    On April 21, 2011 at 3:11 pm

    Thank you for sharing such a personal and painful account of your earlier years. I think most mothers will find it hard to understand a mom who could treat her own child so badly. I know this just reminds me of how lucky I am to have such a cool little kid like I have. Everyone has noted your great qoute abou success, but in the here & what popped out at me was your remark about “trifling” issues. It wasn’t long after my daughter was diagnosed that I began looking at those things that way. I just remind myself that she’ll make those milestones eventually and how pushing her or fussing over it won’t help her or anybody.

    I’m so happy that you found the strength to move on from it and create a happy life for yourself. No one should be treated the way that you were, but you now know just how strong you really are and that strength will only continue to grow.

  11. by Sue

    On April 21, 2011 at 3:26 pm

    Marc,
    I am glad you managed to escape the abuse and that you are now a self advocate. I agree we have to empower our children to advocate for themselves, but we also have to protect them from abuse so they have the confidence to do this. I hope your life continues to go well and that you continue to advocate for yourself and others. I dream of a day when acceptance of differences is the norm.

  12. by Heather

    On April 21, 2011 at 3:49 pm

    Thank you for sharing your story. You had a purpose, and being a voice and inpiration was certainly part of this. I am so sorry that you had to endure such pain, but am thankful you are here to share your story.

  13. by spclndsmom

    On April 21, 2011 at 11:53 pm

    I’m so glad I took the time to read your article. Taking your life is never the best way out, I’m glad your attempts were unsuccessful. Your voice matters and its nice to see you have an outlet now to let your voice be heard. The world needs more brave people like you, people to tell their stories to stop the abuse. I believe in Karma, you are spreading good karma…i like that!

  14. by Marc Rosen

    On April 27, 2011 at 3:08 am

    If you want to thank me, you can do so by making sure you NEVER send your kid to an institution or group home! Over 90% of abuses go unreported, and (according to NYS’s statistics) less than 10% of reported abuses, including less than 5% of physical and sexual assaults, are referred to law enforcement, despite various laws which mandate that this be done with EVERY reported abuse. Your kids would be better off in a community setting, despite whatever fears you may have about that.

  15. by Jason

    On April 27, 2011 at 8:25 am

    Wow. This is an amazing story, and it’s great to see you coming out the other side, Marc. It’s obvious that you have MUCH to share with the world… Keep on doing it, baby!!

  16. by Jenny

    On April 27, 2011 at 6:20 pm

    Marc, I am so sorry for the horrific things you have gone through.

  17. by Lucky

    On April 27, 2011 at 7:10 pm

    This story is a great example of what could happen if a parent of an Autistic allows hate to rule the way they bring up said child. It serves as a potent warning. Autistics are not freaks or monsters. We are human beings, not animals! Bravo, Marc!

  18. by rick

    On May 1, 2011 at 5:13 pm

    your story made me cry. i am also a gay autistic. i also had a monster mother. my father was a monster too. my parents hated that their perfect brilliant first born son was unlike any of the other kids. and they took it out on me every day. now i am 53 and i have a partner who i have been with for 18 years. i don’t have to be normal i am allowed to be me. and the me i am is a nice person.

  19. by Amber Ayers

    On May 2, 2011 at 2:54 am

    Thank you so much for sharing. It is so true that we empower our children by ushering them into independence. Grateful for the reminder :) I hope that you have found people in your life to make up where your “biological” family lacks

  20. by Joe Wallis

    On February 15, 2012 at 3:02 am

    My kid was just diagnosed with Epilepsy and I’ve been researching the subject. I came across this information that might be helpful. I’ve been trying to find forums that are allowing new members.

    http://www.hbci.com/~wenonah/new/9steps.htm