Home > In Their Own Words > In Their Own Words – Finding Autism Island

In Their Own Words – Finding Autism Island

Christine Passey is a wife, mother of two, social worker, and writer. She has been very involved in the autism community since her daughter was diagnosed in 2010. She is currently deeply involved in working to end autism insurance discrimination in Utah. She started her blogwww.thinkingovercoffee.com to work through her thoughts on mothering, autism and advocacy.

Photograph by Heather Sander Photography.

Imagine drifting in a boat, lost at sea.  You have absolutely no idea where you are and the sea is not kind.  There are constant storms and waves.  All the time there is fear.  Where am I?  How did I get here?  How can I find land?  Frequently you think of crazy desperate ideas that might “save you.”  But each time you are disappointed as you find you are paddling in circles.  You are powerless.  All you can do is sit in your boat feeling hopeless, frustrated, alone, confused, and like a failure.
This is how I felt before Skylynn was diagnosed with autism.  I had no idea what was going on, how to help her, and why she was the way she was.  I made desperate attempts time and time again to help her be “normal”.  Maybe this play idea or that strategy might help Skylynn catch up to her peers.  They never worked and I never knew why.  I figured I must be a failure of a mom.  Some days I would give up all together and sit Skylynn in front of Sesame Street and not try at all.  I was so lost, confused and depressed.
Now let us go back to our boat.  One day you see land in the distance.  You think you might be imagining things since you’ve been lost at sea for so long.  But you might as well try and get there, might as well see if it is land.  What do you have to loose right?  Then surprisingly it is land.  It is not the land you imagined.  In fact it looks almost nothing like what you expected.  But, in its own different way it is absolutely beautiful.  It is a difficult land.  Much more difficult then you ever thought it would be.  But it is still land.  You can set up camp and work at making a life for yourself.  A different life then you planned.  One that requires a lot more work then you ever thought possible.  But, it is a good land and you can create a good life on it.
This is how I felt when Skylynn was diagnosed with autism.  I had finally found land.  I had a place to stand, a place to start a life.  I finally understood what was going on.  I was relieved to find out that I was not the horrible broken mom I thought I was.  There were reasons all my desperate attempts to help my daughter become “normal” always failed.  They failed because my daughter wasn’t meant to be normal.  She was meant to be Skylynn; sweet, silly, beautiful, mischievous, unique, Skylynn.
It has been a long time since I was lost at sea.  I have had time to explore the devastating pit falls in this land, and I have felt the loneliness, despair, pain, and rejection that lie in them.  But I have also climbed to the amazing mountaintops of this land.  These highs are indescribably.  The joy, love, excitement, triumph, pride and bliss of these peaks can never truly be explained to someone who has not climbed them.  It is true that my land is very different from most of my friends’ lands.  But I would not change it for the world.  My land has taught me to love every small beautiful moment and to be patient through every difficult one.  It has taught me what true love is and who true friends are.  It has taught me I am stronger than I ever thought possible.  But most of all it has taught me that Skylynn was never lost.  Only I was.  It is a beautiful thing to live on the island of autism with her.  I love you my beautiful daughter.  Thank you for this place and giving me the chance to live on it with you.

*Interesting note.  I wrote over half of this within a few months of Skylynn’s diagnosis.  I couldn’t finish it because I was just beginning to explore “Autism Island”.  It has been really interested to go back and finish it now.  It is my true perspective at two very different times during this process.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
  1. CT:)
    March 1, 2012 at 3:54 pm

    Thanks for sharing…this is a difficult situation to explain and you did it with great accuracy. The failures you describe are similar to how an autistic adult feels not understanding what makes them different from their peers. You wake up everyday questioning sanity and comparing others ability to complete simple tasks without being overwhelmed. Repeating everything you did on a “good day” hoping that will bring some normalcy and help find your “positive mood”. Repeating routines because any slight variation may put you into overload and there goes an entire day. Autism is nothing you would wish anyone to experience longer a few minutes just to “walk in our shoes” before pointing fingers. It does get easier and knowing there are people who accept you excluding any judgement helps tremendously.

  2. March 1, 2012 at 6:27 pm

    so well said. it made me cry. i have a 22 year old autistic daughter. she was born when very little was known about autism. i also got the florida legislation to pass the laws on insurance for autistic people in 2006. we have to stand up and be their voice. autism has taken me from a quiet person to a advocate for my daughter. thank you for this story.

  3. David
    March 1, 2012 at 8:33 pm

    I’ve personally lost my soul to my son’s autism…but thank you for your words.

  4. March 3, 2012 at 10:03 am

    Thank you for this….sometimes we feel as those around us think we just need to drug our little one to settle him down…..great to know that he’s not the one who needs drugged……means ppl need to live his path…we’re along for the ride and he rocks our world:-)Love that little man!

  5. Kathy
    March 3, 2012 at 10:09 am

    The land you speak of is truly a place of great exploration, joy, worry, laughter and love. We live there too and now 11 years later, I wouldn’t want to live anywhere else in this world. My son has made me a better human all around and he is one of the best people I have ever known. Thank you for your imaginative insight and positive inspiration.

  6. March 3, 2012 at 10:19 am

    What a beautiful description of what a lot of us mothers go through and I felt you were definitely writing about my own life – with 2 children (19 years old and 14 years) on the spectrum and also Dyspraxia. I also work with children everyday as an early intervention specialist. What always floored me was the reaction I would get from the pediatrician every time went in with concerns about their development. I was always told — “Your children are fine, you’re too close to autism because you work with it every day. Your children are unique, but they are fine. Don’t worry so much.” Well, that didn’t help me too much just made me re-think what I was previously thinking…”What’s wrong with my children?’ “Why aren’t they socializing?” “Why don’t they act like their peers?” I tried not to worry, but I did and I still do. There were reasons my children couldn’t and still can’t socialize appropriately, there’s a reason my child cannot be touched, wear clothes like other children, there’s a reason my children won’t eat certain foods much less try them. There’s a reason my children can retell an entire Star Wars scene, word for word, with expression. None of that truly matters….they are my children, unique, fun, loving, caring, and so intelligent. I will continue to advocate for my children and others’ children’s rights, but I also will join them in their right to life. Sometimes nothing else matters other than letting them be who they are. I may not have found my land yet, but I will never stop loving my children.

  7. Dorothy Ubelaker
    March 3, 2012 at 10:36 am

    My 17 year old grandson was diagnosed with autism at age 2. Many struggles through the years. His Mother put everything she had into getting him and his brother who was 6 mo. at the time “fixed” as she called it and when nothing work, she decided in her words “she needed a life and that life did not include four kids.” She truly could not live with it anymore. That was five years ago. Their Dad and the kids had to move in with me because he had to work.
    Anyway to make a long story short. I want to say do not loose faith, my grandson who was said to be in the severe to profound rage when diagnosed and his parents told anything they had ever dream for his life to be, to forget it, it would never happened, now drives a car, is a junior in high school with a 3.2 grade point average and only has two sped classes. Yesterday I sat in total amazement as he ordered his own meal and then even called the waitress over and told her that his steak was not cooked right. Miracles happen and I know all stories will not turn out like this, but please just love them for themselves and help them a little if they struggle but mostly just watch them soar in their own special way. I thank God every day for my Grandson, his brother really shows no signs at all now.

  8. Darlene
    March 3, 2012 at 10:57 am

    This was a great piece I imagen thats how my daughter felt even me I guess. My ashley is my world she is 8 and my grandaughter I wouldnt change a thing she is unic funny and smart her own person sure shes not like other little girls who are “normal” but who are we to say what is normal and whats not she is my little angel and just because she has autism doesnt mean I love her less. I wish I could do more to help my daughter with Ashley but they live in another state. We may of found land but we are still setting up camp tring to learn everthing we can to try and help her but with the help for this web site and others like it we will do just fine thank you maybe we can finish setting up camp.

  9. Maria
    March 3, 2012 at 11:13 am

    kleenex moment! have shared it on facebook, twitter and all my family n friends.. you nailed it :) thanks for putting my/my child’s life into words!!

  10. melissa
    March 3, 2012 at 12:24 pm

    Great way to put all of this. I too had days that I gave up, and would sit Josh in front of the TV. I think the only good that came out of that was that we had bought his “your baby can read”. My son is super smart ..and I give those movies credit. I couldn’t get him to make eye contact long enough to teach him anything, and I figured if he would pay attention to the TV, at least have him watch something where he could learn. Now at 3, he is top of his class, has doubled his test scores (which his teachers say they have never seen happen in their teaching career), and a SUPER happy kid! No, he isnt talking, but that doesnt bother me as much as it used to. As of two days ago, he finally gave me a kiss. Granted, I have forced affection on him since birth… but it is super cool to see him pucker.. especially when I say, can I have a kiss?

    DAVID… hun, it breaks my heart to hear you say that. I know EXACTLY how you feel. My husband used to travel for work, and was gone pretty much the first year and a half of his life. I knew Josh (our son) was autistic from 6 months. My husband (Chris) didnt want to admit it. I could tell that it broke his heart. But now, as he seems how smart Josh is.. and all the cool things he CAN do.. he is soooo much better. Time heals all. Im not sure if you are a new dad to this, or just never came to terms with it. But Autism is a gift! God knew you could handle this, and thats why he picked you, and every one of us! I have been through A LOT in my life, and I mean A LOT… starting with losing my dad to a gang when I was 12. He was shot and killed on a golf course. And I won’t even get in to the rest of my life. But at first I was sooo mad at God.. and always scream “what next???” “all this crap I have gone throught, NOW you give me a child with Autism???? REALLY???” That is what I thought every day for over a year.

    So you are not alone if you are mad at God! But like I said, God doesnt give us things he doesnt think we cant handle. If you need someone to chat with David, or anyone reading this for that matter, please feel free to look me up on Facebook.

    I am ALWAYS open for new friends, especially in my autism circle ;)

    MELISSALTERRY@GMAIL.COM of course it isnt in caps..but wanted people to see the L after the A. feel free to add me.. just let me know who you are ;)

    God Bless..
    Melissa

  11. Linda
    March 3, 2012 at 12:36 pm

    Absolutely my world!

  12. March 3, 2012 at 1:08 pm

    Thanks so much for speaking to my heart. I’m living the life as well. I would love to follow your blog but I didn’t see an option to subscribe. Can you direct me? I invite you to follow mine as well if you’re interested.
    elisworld2012.blogspot.com
    Best!
    Kim

  13. March 3, 2012 at 4:40 pm

    I have found and lived on Autism Island for 28 years.
    I am a mother of a 28 year old son with autism.
    Eric was and still is a “visual learner”.
    You can see an article with pictures of Eric (now 27 years old) and some of the
    pictures he has done in the CELEBRATE section of: http://www.AutismConnects.com.
    Link to article with pictures:

    http://www.autismconnects.com/publisher/articleview/frmArticleID/291/

    Because of the above and for the love of Eric and wanting to help other families,
    I created my business
    Picture Card Communication
    Website: http://www.picturecardcommunication.com
    I create and make personalized/individualized visual resources
    and educational materials for people affected by Autism and / or
    other disabilities where communication is affected and their
    families, teachers, therapists, care givers, etc.
    These products are good for children who are “visual learners”.
    *** If you are interested and give me your email address I could email you with lots of visual materials that I have created for children with autism ?? ___ Marion ___ Email: ppusey@sympatico.ca

  14. March 3, 2012 at 5:50 pm

    Kinda a take off of “Welcome to Holland”. Just saying.

  15. Kelly Bracilano
    March 3, 2012 at 9:08 pm

    Anyone raising a child with Autism lives on “Autism Island”. I feel very lucky that I am personally blessed to be able to live there with my husband and wonderful 9 year old son! And that we have supportive friends and fellow islanders to help get us through. :0)

  16. Ann McCullough
    March 3, 2012 at 11:27 pm

    Beautifully written. It takes awhile to find the answers. And then you really don’t know the answers because your own child is different than the autistic child down the street. With so many autistic children coming to light, I hope our society will accept them for who they are sooner rather than later. I hope the schools will begin to teach more visually as well as by lecture. I hope the insurance companies will wake up and realize these children (and adults) really do need the therapy they are getting. I’m not the parent of an autie, but I AM a grandparent who loves her autie more than anything. He is so precious, and capable of so much…he just needs a little help and acceptance. There isn’t anything I wouldn’t do to help him in his journey. Who he is now has been nearly 10 years in the making. I look forward to the next 10 years of his journey with eager anticipation. I see the person he can be, not the person the people who stare at him in mid-meltdown might see. You see…I’m not so sure he isn’t the “new normal”.

  17. March 4, 2012 at 5:45 pm

    Lovely writing. It brought tears to my eyes and was very poignant– I feel like we have very similar stories. It also makes me extremely happy and hopeful too. I started my own blog just last week to try to sort through the thoughts and feelings I have had as a mother of twin girls on the spectrum. Thanks for sharing with me– with all of us. I hope to see more of your writing on here in the future.

  18. Shellie
    March 5, 2012 at 5:40 pm

    Thank you Christine, for sharing your story, as well as mine.

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