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In Their Own Words – Finding Autism Island

March 1, 2012 18 comments
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.

In Their Own Words – Our Path to Diagnosis

February 16, 2012 32 comments

This post is by Jennifer, a stay at home mom with two children.  In 2009 her family started walking for Autism Speaks and since then, we have raised over $38k and are gearing up for another year.  Our walk team is called Grape Jelly on Pizza because my son has a very strange appetite! You can check our her blog Grape Jelly on Pizza which was created  to help others navigate through all the difficult questions and behaviors associated with autism and to also remind parents that they are not alone.  Support – Compassion – Awareness.

It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven’t heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.
My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn’t like to stay still, ever. He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.

We didn’t want to wait, so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn’t a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.

A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That’s when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I’m not big on comparing but it couldn’t be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn’t want my friend to come over anymore because of how upset I would get.

Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true. 

When we were alone he was fine.  We were fine.  It didn’t matter that he couldn’t talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias.

Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, “When are you going to get engaged?”……go to the guy to find out.  It puts her in a bad spot.
At my son’s wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, “No.  He doesn’t have autism.  If he did, he wouldn’t have looked at me.”  OK.  Again, confirmation bias.  A doctor confirmed it, he didn’t have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.

After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No ‘autism’ word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call.

So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn’t have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says ‘autism’ to you and you don’t have insurance, then they are responsible to pay for your services.  Didn’t know that did you?

I also started going to a parent support group through the IU and after the second time a mom told me the truth……speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.

Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others.

“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.

‘Silencing Ourselves: A Plea for Civility in the ASD Community’ – A Sister’s Response

February 3, 2012 37 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

Last night I stumbled across a blog post that struck a chord by Leigh Merryday who writes a blog called ‘Flappiness Is….’ The post was titled ‘Silencing Ourselves- A Plea for Civility in the ASD Community,’ and I was moved and could relate entirely with the lens in which she viewed the autism community.

I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.

Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.

Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.

Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.

When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’  Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”

I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.

Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.

We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.

Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?

In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!

But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.

This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.

So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.

In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.


Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

“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.

MIXED EMOTIONS: A Mother and Son Response to the DSM-5 Change

February 2, 2012 23 comments

Editor’s note: In this blog, Wills and Monica share their feelings about the possibility that planned revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will cause him to “lose his diagnosis” of autism. As Autism Speaks Chief Science Officer Geri Dawson explained in a recent statement and webchat, preliminary reports may have overestimated the number of individuals who would lose or be denied a diagnosis under the proposed new definition of autism spectrum disorder (ASD). Autism Speaks is proactively working to determine how the new DSM will affect diagnoses and to ensure that no one affected by autism symptoms loses the services they need. Stayed tuned.  

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This is a guest blog post by author Monica Holloway, who wrote “Cowboy & Wills,” and her son Wills, a 14 year old on the spectrum. This post has 2 parts – first is Wills’ reaction to the DSM-5 changing, and then Monica’s reaction to Wills.

Wills and Monica
Wills and Monica

Wills writes…

(Monica’s note: Wills watches the evening news every night for current events, and we were watching together when this (the DSM-5) was announced as a possibility. As you can see, Wills has taken it as fact, even though we’ve talked to him about this. Wills is being mainstreamed in the Fall. This was in place long before Wills saw this newscast.)

I have been on the autism spectrum now for fourteen years. Ending a fourteen-year journey through such hardship, fear and compulsiveness seemed to be unheard of. To see that goal finally come into view is truly unbelievable. Little by little, I inched my way off the spectrum, overcoming so much fear and anxiety.

Now to possibly be considered “not autistic” simply over joys me.

Nearly ten years ago, I was diagnosed with autism. That marked the start of a ten year long marathon that might be coming to a close in the near future. When I saw Brian Williams say that “Aspergers might not be considered autism,” I jumped for joy along with everyone with Aspergers, I assume.

That announcement meant the world to me, and I will remember it for the rest of my life.

There are pros and cons involved in no longer being autistic. Like special needs schools. I am now too advanced for my special needs school. I will likely go to a different school in the fall. Another is, special needs services and counseling. But I think that these are helpful to anyone.

For the hundreds of thousands of people with Aspergers, we finally did it!

Monica’s writes…

As Wills’ mother, I find his take on the possibility of changing the DSM to not include Aspergers Syndrome (Wills’ diagnosis) incredibly heartfelt, as well as heartbreaking. Through endless conversations and therapy sessions, we felt that Wills was comfortable and accepting of his diagnosis. It’s painful (and yet understandable) to  see that he has been hoping to come off the autistic spectrum. He is vocal and positive about his autism, often speaking to younger groups of children about his experiences. We saw him confident in who he was.

Wills is fourteen years old. If this had come up when he was first diagnosed (we had him in therapy when he was eighteen months old), he would not have received the services that have been instrumental in his improvement.

As a young child, Wills was considered “high functioning,” but he still had many social, academic and personal issues that were debilitating. He was unable to stay in a classroom without a shadow, use a public restroom, interact with his peers, sit through any kind of school assembly, balance on a bicycle, hold a pencil or pen properly, sit in a restaurant —and the list goes on.

My worry is that children like Wills will no longer be eligible for the services he received—the very services that gave him a chance at living his life as a relaxed person, fully integrated into society.

I was surprised to see that Wills was so relieved to hear that he might not be “autistic” anymore, and that this was a great accomplishment to him. And in so many ways, it is an incredible accomplishment. He’s worked very hard, but I know other children and other families who have also worked just as hard without the same results. Who can say why some children improve while others continue to struggle? And that’s not to say that Wills no longer has issues. There is plenty to work on.

He continues in his social skills group, speech and language therapy, and sees an educational therapist to keep himself up to grade level. But these are not life-altering problems. His improvement is a miracle to me—a miracle that I want other families and children to experience.

My son is my heart, and I want him to be proud of himself whomever he turns out to be. If he is (or is not) considered diagnostically “autistic,” it’s irrelevant in terms of the way I see him, but it is obviously not irrelevant to the way he sees himself. I’m proud of Wills for writing about his true feelings. His happiness and self-esteem are critical, of course, to his leading a happy life- which is all we want for our child. There is, as I said before, work to be done.

Have you had these conversations with your children and family? Tell us what you think by leaving a comment and by sharing this post. 


In Their Own Words – A Moment in the Sun

January 19, 2012 11 comments

This ‘In Their Own Words’ is by J. Lorraine Martin. She digs deep through laughter and tears in her personal blog on life and motherhood at http://cheeselesspizza.blogspot.com.  She is the mother to three children, one of whom has autism.  She is a writer, graduate student, volunteer/mentor in the autism and refugee/immigrant communities.  

I’m standing on a tennis court in my neighborhood.

Despite trees baring no leaves, the weather belies the time of year as the sun warms our exposed arms.  I have an unlikely tennis partner by my side:  my 17-year-old autistic son. This was his idea today.  A breeze tickles through our hair, birds on a Southerly journey pause to sing, as if for us.

My other son–an avid tennis player capable of sending balls at a fast pace swooshing right by me before my eyes can barely register it–stands on the other side of the court, playing left handed so as to ease the pace of the game and give us a fighting chance.

We have playful rallies.  We work on helping my oldest son by my side call out “mine” or “yours.”  We laugh over mishits, and occasionally my youngest son can’t help creaming a ball at me.  I can’t help trying to return it with equal power, most often hitting the net and hoping I don’t tax my old lady joints too badly.

I ponder the present moment. I am playing tennis with both of my boys. No one is rushing the moment.  No one is embarrassed. No one is anxious.  There are no “scenes.”  My oldest son, who usually surveys his surroundings on heightened guard, seems like that layer of self protectiveness is not required on this day.  He has stepped outside, something he doesn’t do much in our neighborhood, as he prefers the security and comfort of home. Yet on this day he is standing calmly and happily in the sunshine by his own initiative.

My husband, our dutiful ball boy and resident coach, asks our oldest son:  “Why are you smiling so much?”

He answers,  “Because I’m so happy.”

We hit some more.  I feel comfortably wrapped in gratitude and joy.  At the end of our playing time, I hug each son for different reasons; heroes to me in their own unique way.

As my husband and youngest son want to play longer, I ask my oldest son if he would like to walk around to see the other courts, playground and pool closed for the winter.  Normally, he would want to leave and go back home to what feels most comfortable. On this day, he says, “Let’s walk.” And we do.  Strolling, peacefully taking in the view. We end our walk, viewing my husband and other son playing some more, as we stand on a higher platform looking down at them.

And then expectations begin to seep in.  “Maybe you might like to come up to the high school to watch your brother play sometime.”  “Well, maybe,” he answers.  I imagine him sitting in the stands with us; my heart yearns and hopes.  I then bring up that his yoga class will be resuming now that the holiday break is over.  An intruding bit of anxiety hits my son, “I’m not sure if I want to go back to yoga, Mom.”  He is recalling that the instructor had coughed the last time and how that bothered him.  I find myself wanting to say some sort of validating thought coupled with some problem solving advice as I feel yoga is good for my son to cultivate self-awareness and inner calm.  I don’t want him to discount all he loves about a person simply because they coughed as he sometimes tends to do.  I find a bit of sadness creeping into my heart.

And then I suddenly feel quite aware of myself.  Why am I clouding such a perfect moment—the calm and peaceful present—with expectations about the future?  Why would I allow such intrusions?  I switch back to what matters most:  this moment I’ve been given.

The sun.  The breeze gently whispering.  The crisp sound of my youngest son’s racket making contact with a ball as he plays tennis with his dad. My oldest son by my side, entirely calm, having just happily played tennis and taking a leisurely stroll with me.

He then puts his hand up for a minute to gesture for me to pause.  “Listen, Mom to the birds.”  And we stand together and hear their song.

He adds, “I feel so good inside.”  My boy’s song amongst the birds.  A mother’s spirit aloft and soaring.

We stand side by side gripping the iron rails of a fence, looking down at my husband and youngest son playing tennis. My emotions flow forth.  “Oh, Mom is crying,” my husband says with a smile on his face as he looks toward me with understanding.  My son by my side looks at me and offers, “Mom cries when she’s happy, but I only cry when I’m sad.”   My husband replies, “Why do you think she does that?”  He says, “Because she is proud of me.”

The Truth About Me

January 5, 2012 24 comments

This post is by Ryan Lord.

“To dream anything that you want to dream. That’s the beauty of the human mind.  To do anything that you want to do.  That is the strength of the human will.  To trust yourself to test your limits.  That is the courage to succeed.” – Bernard Edmonds.   “The Truth About Me” was realized a few years ago when my parents told me what a special part of me is…autistic; specifically, Aspergers Syndrome a type of high functioning autism. Accepting change and letting go of things dear to me are daily challenges of someone with Asperger’s Syndrome.   Making friends and learning the social cues necessary to sustain friendships is the hardest part of being autistic.  Despite everything that comes with being diagnosed with autism, some of these very challenges have shaped me, and pushed me to my academic best by giving me a true sense of who I am.

When I have a dear attachment to something even if I am finished with it I can never let it go.  A few days before I wrote this essay, my mom asked me to give my old Pokemon games to my little brother, because she thought I was too old for them. Even though I stopped playing it, I still had some attachment to those games because for me when I put such hard work into something and letting it go is very difficult. Even though most people would much more easily give up their bonds, I for one do not let them go so easily. This has made me a kind and gentle person and I am able to appreciate what I have and not take it for granted.   Another example of this is when I was in elementary school I knew a little girl named Kira.  Kira and I were the best of friends. Kira was very tomboyish and I was different.  We made the perfect outsiders that found each other’s friendship.  However, one day she moved away and I was down in the dumps. I was really sad when she moved away. It was really hard to let her go, I wished I could see her again. Most six year olds, would have easily found a new friend and moved on, but for me, it was devastating.  Aspergers allows me to appreciate and care for all things in my life. Everything is precious to me, from my little brother to all my best memories of the people who helped me in my life. This makes me grateful for what God has given to me.  So even though it is sometimes hard, I find what is good about this part of me and I continue to try and understand and appreciate it.

Over the course of my life I have been passionately interested in many different subjects. Trains, airplanes, and dinosaurs, are among the many subjects which I have come to study. I have a bountiful amount of knowledge in my head that I can recall at a moment’s notice.  I perseverate on these subjects so much, that sometimes it distracts me from my school work –  much to my parents chagrin. I learned about many different types of airplanes how they were designed why they were made. I went to air shows, watched videos on them, collected books and I learned so much about them. This passion of airplanes has steered in the direction of possibly considering majoring in aerospace engineering.

Ryan and his best friend Austin

Making friends has always been the hardest part of my diagnosis. I prefer my own company and I would consider myself a very shy person. I am the type that likes to have a few close friends rather than have a whole bunch of friends. I was never really good at making friends. But I have acquired some skills that allow me to interact with people. It took a class of “Learning to Make and Keep Friends” to help me in this department.  A part of this class was to invite a new person to your home and not play any video games.  It was a homework that was hard for me and even harder because electronics is such a big part of modern day socializing.  I got the courage to ask a boy in my neighborhood for a playmate.  This class and this play date was a life changing event.  My best friend turned out to be a friend I met from a homework assignment.  As I said before, I don’t need a bunch of friends, all I need, is one good friend and his name is Austin.

The truth about me is no different from anyone else’s truth. We all have things to overcome; we all have to have the courage and will to succeed. My diagnosis makes me no different from anyone else, I choose to think, it sets me apart makes me strong. “Anyone can give up; it’s the easiest thing in the world to do.  But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Ella Fitzgerald. This is a quote I believe in.  My journey has never been easy but along my way, I have looked at my gifts I have and marveled at them.  I have looked at all the things that would have surely hindered my progression but instead, they have served me very well.  My diagnosis as it turned out gave me my best friend, it provided me with honors in an early college prep program and has helped shaped the caring, passionate, gentle person I am today.  Aspergers has given me a strong sense of who I am and and incredibly strong sense of determination and self esteem.  There will always be things that I am good at; there will always be things I will never be good at.  I take those in stride and try not to miss a beat, or the boat to life, or the boat to life’s next big adventure or challenge.

‘Tis the Season, 2011

December 26, 2011 6 comments

This “In Their Own Words” is by Shelley Stolaroff Segal. Segal is a playwright, performer, and essayist living in Greensboro, North Carolina.  Her latest play focused on autism and race and was performed at the Manhattan Repertory Theater and TEDxEast.  Her fourteen-year-old autistic son, Josh, is her divine inspiration, as is his equally divine twin sister, Jordan.

It’s that time of year again.  Time to reflect on the past twelve months and count my blessings. 2011 was a strange ride, full of jarring twists and turns. I’ve lost a few marbles but added a dress size. My son, Josh, a low-functioning but charming fifteen-year-old, is still in the throes of puberty. (Geez, will it ever end?) Despite some cognitive regression, his social skills have improved greatly. He knows more restaurant managers than I do. Good thing, because I’m a lousy cook. So, I will give thanks for my son’s growing sociability, his love of school and family, and recognize a few more of the year’s blessings:

*I’m grateful that Josh likes the cafeteria as much as I do. We try to arrive around 4:00 to miss the dinner rush.

*I’m grateful that Josh’s limited vocabulary is becoming more age-appropriate.  Gus, one of his longtime aides, has taught him how to say, “I want to drink beer at Hooters.” It doesn’t matter that Josh doesn’t understand what he’s saying. Gus is still delighted.

*I’m grateful that only chemicals give me headaches instead of the pubescent odors that assault my nose every day.

*I’m grateful for Josh’s laugh.

*I’m grateful–thrilled actually—that my son and his twin sister, Jordan, are going to the same school for the first time in their lives. Schlepping them to and fro every day is a pleasure. Really.  I tear up sometimes when I watch them walk in together.  Jordan hugs her brother goodbye and shakes hands with his classmates before beating the bell to her own class.

*I’m grateful that I don’t pull my hair out over Josh’s seizures.  It falls out painlessly.

*I’m grateful that we haven’t given up on Josh’s speech.

*I’m grateful that Josh is obsessed with “sook.”  With school.  Every morning he shouts the word deliriously in the shower, and at the table, and from the rooftops. “SOOK!  SOOK!!”  It’s only a problem on weekends and holidays.

*I’m grateful that the thickening hair on Josh’s legs is finally covering his bug bites.

*I’m grateful that homecoming weekend was more sweet than bitter.  I allowed myself to cry only for a minute when nobody was around.  I always thought my twins would be double-dating in high school. But I was thrilled for my daughter, who looked radiant, thrilled about her very sweet boyfriend, and thrilled that my son didn’t care one bit about what he was supposedly missing.

“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.

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