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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.

Five Benefits of Growing Up With an Autistic Sibling

December 15, 2011 4 comments

Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the “Starabella” three-book audio series. Visit her online at www.starabella.com.

Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:

1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.

2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.

3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.

4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.

5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.

Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.

“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 – Despite the System

December 6, 2011 10 comments

This is a blog post by Barbara MacArthur. She was diagnosed on the autism spectrum in her mid seventies and her son Howard also has autism.

My husband and I split up before our son was born.  He left the city and I had no idea of his whereabouts.  He had given up his job and later I found he had left behind a lot of debts which were nothing to do with me, but being a muggins I managed to repay them as I continued to work until a couple of weeks before the birth. I did not tell anyone that I was pregnant as I was lucky it did not show and I was afraid of losing my job.  (I had to leave a couple of weeks before the birth, as there were no special arrangements in those days).

We heard no more from Derek until one day, having taken Howard out in his pram; he pulled up in his car. I thought he wanted to look at the baby, but instead he asked me to the movies. It was the last thing I wanted to do. I said no, and he went, and that was the last I saw of him. At the time these events felt tragic, but now Howard, who is 57 and still living with me, and I smile at this. I thought Derek was strong and dominant. I thought I was weak and feminine. I see now that I did not know who I was then, and that I was the strong one.

When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic.  “Just one of those things,” the doctors said. One told me he was “a write-off.” Another advised, “Stop sacrificing yourself, put him in an institution and forget him,” but having Howard adopted was an option I never considered. It seemed such a ridiculous suggestion, and I was sure I could work to support us.

I always had to work, there was no choice.  My husband never supported us and I did not know where he was. Howard was a bonny baby and weighed 28 lbs when he was 6 months old. Social security money would have been insufficient to keep him.  He always had a large appetite and his extra-large size clothes were expensive.  In 1973 my son received an official letter to say my ex-husband had died inManchester.  He had never remarried so my son was his only relative, but nothing was left except just enough to pay the burial expenses.  It was very sad because he was well educated and handsome, and had served as an officer in the Royal Artillery during the war.  Unfortunately, no widowed mother’s allowance, because I had divorced him in his absence (by newspaper advertisement) to make sure I could keep my job – married women were always the first to be made redundant.

In those days there was no allowance for one child or for a handicapped child or lone parent. I had to smile when I was refused a mortgage because my husband’s signature was needed in those days, even though he had left his job, I still had no idea where he was and I was in full-time employment.  I managed to get enough cash to buy a very old house with a dodgy roof, no bathroom and an outside toilet. It was cheap because of its condition, but it was all I could afford, and it took me ages to clean it up, get rid of the cockroaches, beetles and mice.  Somehow I managed to carry out some essential repairs myself until, over the years I saved enough to pay professionals for proper improvements and repairs.

Once, when my son was very small, I did give in to pride when I was on my uppers and applied for help from a charitable organization which had been set up to give financial and other support to unmarried mothers.  They had extended their remit and had given regular financial help to widows, widowers and single dads.  I felt so embarrassed when they turned me down flat in such an unpleasant way telling me in no uncertain terms that my it was my husband’s duty to support my child and me – as if I did not know that already!   Unfortunately, the phrase “Tell me about it!” had not yet been coined. Life is so funny – thank goodness I could see the funny side of it.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens.  Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of goods to the floor. Could you blame the staff for threatening to ban us? When I took him to the beach he had to be watched all the time.  He had a habit of plonking himself on girls’ tummies when they were sunbathing. And if the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: “Why don’t you control that effing boy! Women like you shouldn’t be allowed to have children. You should be sterilized.” Even doctors did not seem to understand autism and no facilities or support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement.

I am proud of my son for what he has achieved.  He will always be autistic and be considered by many as being ‘eccentric’ or a ‘bit odd’, but he is popular and has a tremendous sense of humour.  He is great company, enjoys his hobbies and is kind and affectionate. He is an extremely happy person.

A few years ago my son, Howard, and I signed on for part-time computer courses because we were both computer illiterate.  A Disability Officer at the Jobcentre referred him to the classes and I joined too, partly because I felt my son needed a ‘helper’ to cope with his learning difficulties.   I need not have worried.  We both became hooked on computers and ended up by both signing on for a full-time course at a local College in 1998.  My son became so proficient that the tutors nicknamed him ‘cyber-junkie’ and the name has stuck.  We both lost education in our youth – me at the age of just 14 because my school was destroyed by explosive incendiaries during World War Two – my son because he was refused admission to any school until he was 10 years old because he could not speak until then.  As the local Education Department put it in their letter to me “the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education”

We completed the second year of full-time studies at college.    An assignment Howard chose to complete was about shopping on the Internet (5,000-plus words plus illustrations) and he named it ‘Window(s) Shopping’.  Despite his slight speech impediment he gave a great 20-minute presentation of the subject in front of class and tutors. It was very enjoyable for everyone.  I chose to compose an assignment about elderly people surfing the Internet and I called it ‘Cyber-Wrinklies’.

I used to be a full-time carer for three people – my elderly parents and my son.  My parents gave up their Council flat in Llanrumney and lived with my son and me for 16 years when we cared for them.  In July 1982 I was lucky enough to be able to take early retirement, as it really had become a 24-hour a day job at home. Some years ago my parents died within a month of each other – both in their 90s, in our home, leaving just enough money to cover cremation expenses. They had dreaded the thought of going to a nursing-home, they went suddenly and without pain, first my father with a heart attack and then my mother with a massive stroke.

My son and I were both thrilled to gain our Computer Science qualifications and continued our studies.  Howard graduated from University in 2003 – Computer Science. We are both very happy and have made lots of friends through our IT interests. Our life was transformed. We owe a lot to the tutors and staff at college and University and those who have set up these educational schemes.

Howard and I complement each other in that we have similar interests — computers and bookshops, for instance — yet we go in different directions. Howard loves downloading train simulators from different countries of the world on to his virtual railways. He has become hooked on music from YouTube. Howard loves Enya. I like downloading photos of tropical blue seas, palm trees and beaches. I like looking at different websites and what is going on in the world, especiallyUSpolitics. Howard is wary of the telephone, young children, noise, dogs, yet we both love heavy metal (noise) like ‘Queensof the Stone Age’, ‘Rammstein’ and Dave Grohl. Howard used to tease me because I loved all Leonard Cohen CDs, but later he became hooked too.

We are both loners – I suppose that is the autism in us.  It was not until my father was quite old that it dawned on me that he always had the classic symptoms of autism.  He had no formal education and joined the Royal Navy at the outbreak of the Great War (WW1) when he was just 16; he was well read and considered very clever, but extremely eccentric. When I thought back to my childhood I realized that I was ‘different’ but I was not diagnosed as somewhere within the autistic syndrome until I was in my mid-70s.

Now I am 85 and still Howard’s only carer, though he needs guidance more than care these days. I tell people that as I get older and less strong physically, we “prop each other up”, but that is partly to raise Howard’s self-esteem. He likes to consider himself my “nurturer”, a word he found on the web. I joke sometimes about pensioners who say they are lonely; I wish I had the chance to be lonely. I enjoy time on my own, always go to bed late and sometimes get up in the early hours and, if I am lucky, watch a late-night film drama. Tonight as I write he is in bed and I have just put out the rubbish bags. He helped earlier by emptying waste-paper baskets around the house, so it is team work. But he is often in his own world in his mind.

We lead a happy life. Coming back from town this morning we were dodging the traffic and continually laughing for no particular reason. But I worry what will happen to Howard when I die. My ex-husband died of cancer inManchester (this we learned by letter in 1973). We have our own home and Howard would want to remain here. There must be many carers in similar circumstances throughout the world who lay awake at night wondering what will happen when they are gone. Howard loves his home and is happy here; it would break his heart to be moved.

We were very lucky as we survived DESPITE the system – not because of it.  I hope eventually all of you will be lucky too.

Diagnosing Psychiatrists: Making Doctors Work for You

November 28, 2011 11 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Since my early adolescent years I have been a reluctant guinea pig for the psychiatric industry. I have been repeatedly misdiagnosed, overmedicated, poked and prodded. I’ve had Bipolar Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, etc… I’ve been on every sedative, stimulant, anti-psychotic and anti-depressant on the market. I’ve endured unbearable side-effects and withdrawal symptoms. I’ve taken drugs to treat the side-effects of drugs that I was taking to treat the side-effects of other drugs! More than once, I’ve wanted to beat a shrink to a bloody pulp, but was too comatose to do so. After a few years of seeing these quacks, I went from an admittedly eccentric kid to the drooling, incoherent lovechild of Charlie Sheen and Anna Nicole Smith.

How exactly did this happen? How did one doctor after another diagnose me with such a wide variety of mental illnesses? Several decades ago a diagnosis of Bipolar Disorder, then called Manic-Depression, typically resulted in commitment to an institution. Now Bipolar Disorder is often nothing more than a trendy label, worn with pride by actors, artists and the like… ” I’m into sculpture and Kabbalah, I smoke American Spirits and I’m Bipolar.” Give me a break!

I was once seeing a psychiatrist who eyed me suspiciously for signs of mania during my every visit. I finally asked him, “How many times do you have to see me before you realize I’m always like this?”

“Well,” he said, “Maybe you’re the kind of bipolar patient who is always manic and never depressed.”

“Are you saying I’m unipolar? Is that actually a diagnosis? Maybe I’m just hyper…”

As many of you know, I’m autistic. This diagnosis is unquestionably valid and has radically altered the course of my life and the way I view myself. How did I go through a decade of constant psychiatric treatment without anyone catching on? Well, for starters, there are a limited few pharmaceuticals approved for the treatment of autism.. There are literally dozens of medications used to treat the symptoms of Bipolar Disorder. You do the math…

This rampant tendency towards over diagnosis belittles the struggles of people who actually have these disorders, and instead of treating symptoms, often creates them in individuals given extremely powerful and dangerous drugs without due cause. I never had an anxiety disorder until I became dependent on anti-anxiety meds called benzodiazepines, which were originally prescribed to me to treat the agonizing side-effects of an anti-psychotic. I guarantee that anyone prescribed escalating doses of sedatives will develop some major issues. But the more issues you have, the more issues you will seek treatment for. The psychiatric industry doesn’t stand to make much money from a patient without psychological complaints.

An equal but opposite problem is caused when perfectly valid treatments are withheld from patients for irrational reasons.  Most doctors receive the majority of their pharmaceutical knowledge from representatives of the pharmaceutical companies. Also, many doctors receive kickbacks from big pharma for prescribing their meds. Because of this, tried and true treatment options are passed over in favor of “the next big thing.” However, these new pharmaceuticals have not yet been proven to be any more effective than their more affordable predecessors, if, indeed, they are any different at all.  The pharmaceutical industry is a lot like Hollywood; the latest blockbuster is usually just a sequel or remake. Drugs that have worked for decades are often tweaked, reformulated, renamed and presented to the public as something revolutionary (this is the case with a myriad of extended release medications, whose instant release counterparts are often just as effective for a fraction of the cost).

When seeing a shrink, it is important to check out the office swag; if the clock on the wall, the paperweight on the desk, and the pen in the doctor’s hand are all labeled with the name of a certain drug, chances are you will find that name on you prescription. Sadly enough, that doctor probably found the same name on their ticket for an Alaskan cruise.

If you find any of this alarming, you probably haven’t been lobotomized by the psychiatric industry or are currently too overmedicated and uniformed to know the difference. If you are seeing a psychiatrist or plan to do so, please, save yourself money and heartache; do your research! No one should go through the hellish and unnecessary experience that I did. Are you sure your diagnosis is correct? Are you taking the most effective, affordable, and time-tested medications?

Ask plenty of questions. Make suggestions. No patient should ever be afraid of their doctor. Remember, your doctor works for you!

I am by no means an opponent of pharmaceutical intervention, and have received enormous benefit from the right medications.  Unfortunately, the road to psychotropic success was unnecessarily long and painful.

It seems the psychiatric industry suffers from some nasty symptoms, including reckless disregard for the safety of others, lying, lack of remorse, and consistent irresponsibility.  According to the DSM-IV, these symptoms indicate a diagnosis of Antisocial Personality Disorder.  Now, I’m not a doctor (I just play one in real life) so I can only suggest that the psychiatric industry be given a diagnosis of APD and prescribed…  a dose of their own medicine.

“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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