Tag Archives | awareness

Autism Fears – Do you share these?

fearAutism awareness, for many, only includes the facts and figures, the stories of heartache and the “struggle” that the media likes to talk about so much. It gives parents so much fear in their hearts that some just outright refuse to have children just to avoid the risk of having a child of their own with autism.

I have my own fears. After years of seeing this “awareness” thing breed more and more fear, I’ve come to develop my own fears as a direct result.

  1. I fear that doctors will continue looking for a prenatal screening method to start giving mothers the option to abort a child just because it has autism. There are already far too many beautiful lives not being lived just because parents decide not to conceive just due to the risk.
  2. I fear that, should my son find someone wonderful to love, and marry and have a life with… that she may fear the thought of having children with him. Autism is genetic after all. The risk is automatically amplified. I’d hate, hate, HATE, for someone to hesitate in giving my son a family of his own because of their own fears.
  3. I fear that, as the ratios get closer and closer to 1 in 2 (they’ll never be that but they’re getting there), one day people may see my son as “one of those people.” Awareness is nice and all but there can be awareness without acceptance. And if that happens, if there becomes a division within society rather than an inclusion, my son may find himself having a tougher battle than I ever had.
    An individual is great. People scare me. And society, thus far, hasn’t given me much reason to think that they can overcome their fears.
  4. I fear more and more people will continue to replace the risks with much bigger risks such as feeding bleach to their children or refusing to vaccinate. People are willing to try anything. And by anything, I mean anything. You can only try “anything” for so long before you start treading into unhealthy territory.

Each April, with the increase in awareness efforts, I worry. My own fears set in. I see people talk about how hard it is. How terrible it is. What the numbers are. What’s worse. What’s not right. What’s not funded. What’s not available. And I see people afraid.

At least once a week, I receive emails from people telling me that they fear the risks. If they already have a child with autism, the doctors tell them the risk increases with another child. If they’re expecting a boy, the risks increase. If they have autism in their family, the risks increase. Risk, risk, risk!!

One day, I fear, the playgrounds will be empty. The classrooms will be vacant. I fear the future.

I used to fear the future anyway, for what it would not do for autistics. Now I fear it for what it might do. If the fear continues to grow.

My child already has the deck stacked against him. I’m afraid to think how much harder it can get by good people thinking they’re doing good things but not recognizing the fear they feed.

Awareness is good. Awareness is necessary. But awareness without education, without explanation, without acceptance… that’s what I fear.

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Novel about autistic boy who loves birds aims to advocate, too

Tell me a story.

Mike Wallace, the legendary 60 Minutes journalist, said that’s a universal human desire. Kids may be the ones who ask, but everyone loves to hear a story. On Stuart’s and other parenting blogs, we love to nod our heads as we recognize our own kids in his words.

Sparrow Migrations (middle shelves) in good company -  John Elder Robison and Temple Grandin

Sparrow Migrations (middle shelves) in good company – John Elder Robison and Temple Grandin

What if you could enjoy a story, and support autism advocacy? Today and tomorrow, you can.  The book is called Sparrow Migrations, and it’s my first novel, published just this month to coincide with Autism Awareness Month.

Sparrow Migrations is the story of Robby Palmer, a 12-year-old autistic boy, who witnesses the Miracle on the Hudson plane crash in New York City. He becomes obsessed with birds after he learns they caused the crash. Robby also finds his life intersecting with other crash witnesses and survivors, as all are transformed by the extraordinary event—and by each other. The novel was a semifinalist in the Amazon Breakthrough Novel Award contest in 2011 (top 1 percent.)

In April, I’m donating $1.88 per book sold (in a nod to last year’s prevalence numbers) to autism advocacy organizations. In my hometown I chose the local parent support group and a program to get iPads to public school students on the autism spectrum.  As the first stop on my book blog tour, Stuart gets to pick the organization: Autism Society of America Today and tomorrow, I’ll donate $1.88 per paperback sold ($14.95 on Amazon) to http://www.autism-society.org

In this way I’m hoping to spread the word about the novel, and also generate some funds for smaller, local autism advocates that don’t have the reach of the big, blue guys.

One more thing: The striking cover was designed by a graphic artist who is autistic. Anie Knipping is the author of Eccentricity, a memoir of her life lived on the spectrum. We connected through one of those fluke friend-of-a-friend situations, and I’m very proud to show her talent on my cover.

Hope you’re up for a good story.

Buy Sparrow Migrations on Amazon >>

 

 

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Diagnosed as an adult, recalling my childhood, reaching out to other adults on the autism spectrum

qandaMy family has a lot of interesting stories to tell people about the younger me. That, in itself is not unusual. However, the stories always… I don’t know. I don’t resent my family for telling them over and over again but they always made me feel a little, strange. Uneasy even. Not so much that I’d wish they wouldn’t tell them anymore but at the same time, something just didn’t sit right.

First, a little history from more recent times, my first child was diagnosed with autism at 2.5 years of age and ever since then, I had become much more aware of my own self as a result. It’s not that I didn’t always know I was out of place, that much was very very obvious. But without a point of reference… it’s just an indescribable feeling. However, once I began to see so much of my own life flash back at me as I experienced these things for a second time as an extension of my own son’s experiences, I knew that I had to take action.

So at the age of 35, I found myself in my doctor’s office telling them that it was time that I had an answer. Rather than always suspecting but never really knowing… I needed to be sure.

I was diagnosed with Aspergers, or “Autism Spectrum Disorder” as per the DSM 5. I was sure to ask if I was assessed using both the old and new requirements and they assured me it was true.

Before then, I had kept my unease silent all my life. I had to, I couldn’t describe it. After I recognized what it was, I still kept it silent. Because I didn’t dare claim something about myself that I couldn’t be sure of myself, something I couldn’t prove. Not something as important to me as autism had now become.

Finally, when I was officially diagnosed, I wrote about it in a 3 part series, you can read part 1 here, but I also promised that this blog wouldn’t be about me. It’s about my son, plain and simple.

However, in the interest of autism awareness, I feel this is an important point to make. Because people need to realize two things:

  1. The ratios you hear about children having autism? 1 in 88? 1 in 110? The same ratio exists for adults.
  2. Many adults that have autism… don’t even know it.

I have to ask myself, if I had never had a child with autism and thus, never come to know as much about autism as I do now, would I have ever known what it was about me that just didn’t seem to add up?

Think about it.

Back to the topic at hand, old stories that cropped up every time my family met someone new or were just telling old tales, I suddenly realized why I’ve always had this uneasy feeling about them.

One such story involved my grandmother working around the lodge, it was a hunting lodge with a trailer park. While cleaning up one building, I was playing with my toys all by myself. After a while, she moved on to another building to do laundry. She got talking to someone and realized, an hour later, that the last time she had seen me was back at that first building. Rushing back, because it had been an hour and who knows what could have happened, she found me, sitting on the floor, still doing what ever it was that I was doing with my toys, totally oblivious to the fact that she had ever left at all.

I was “in my own little world”, as she would describe it.

Other stories involved babysitters that would all describe me as the best, most well behaved child they had ever babysat. Because I was so quiet. I listened perfectly. I didn’t get into anything, no need for child proofing and I just stuck to my routine like a well oiled machine.

Another time, my grandmother recalls a time a blue van pulled into the parking lot. My father had left me 3 years earlier when I was 2 and yet, when this van rolled in, she thought it might have been him coming back. It was the same model, same size, same blue. Me, being 5 years old, looked out the window and immediately said “oh… that’s not him” and left. Sure enough, it wasn’t.

I could keep going on and on with stories like these that are not.. bizarre. They’re not so very different from anyone else’s stories that I would ever think that they made me different from anyone else. Even though, the truth was, the fact that these stories were just unbelievable enough were what made them such great stories for my family to tell. I just never thought much of them beyond “ya ya, I was quite the kid” and left the spark of unease behind me.

There are also instances, not so much stories, that hold the same feeling of unease for me.

My mother and step-father moved around a lot. I attributed my never having any friends to that, despite the fact that my step brother always did.
I was nearly forced to go into a special school for being too smart at one point, an act that freaked me out so much that I never studied again another day in my life so as to never ever be threatened with being an outcast again.
I never attended a party or group gathering that I didn’t have to and the ones I did have to, I sat at a table, by myself. Even at the prom. I figured I just didn’t fit in. Anywhere.

For many adults, we look back on our lives and rationalize the events away as merely a shyness, or a result of our situation or surroundings because at the time, that’s all we had for a reason. We had no one to talk to, there were no doctors that would recognize it. Besides, we wouldn’t dare draw that kind of attention on ourselves.

My childhood was not out of the ordinary. I was.

I always knew it. But only on a subconscious level. Without knowing why, I never knew how.

Still, I like to think that I turned out ok. My family didn’t treat me like I wasn’t ordinary, they couldn’t have. They didn’t know either.

I don’t think, looking back, that much could have been done differently to give me any better or worse outcome from where I am now.

Still though, as an adult that is now diagnosed, I now have definitive answers, and that makes a very real difference. It could have made a difference then too, maybe.

Either way, difference or not, I think that it could make a difference for others even more than myself in that, if I can raise awareness of what and how this happened for me, perhaps it will enlighten others that have felt the same way. Perhaps even raise awareness for others that work, live or simply know another adult that may seem… different, somehow. Perhaps that little bit of something about them that you can’t quite put your finger on is actually a sign of a diagnosis that never happened.

My child will know. He’ll have a name to give the feelings that he can’t quite describe. And I can only hope that it will help him some day in coming to terms with those feelings and even living with or over coming those feelings.

But there are many who will never know. There are many who do not know now.

I’ve raised awareness for my child. And will continue to do so. But there are more people out there than just my child. And they’re not just children.

I really wish someone would have been there to say “You feel alone, but you’re not. This is why…” but there wasn’t.

I’m not sure I could ever truly explain just how lost that can make you feel. Feeling like you don’t belong is one thing but feeling it while having no idea about the why or the how of it is… you can’t help but judge yourself. And not in a good way.

To have just one person that could have recognized a symptom, a sign or just to say “maybe you feel this way for a reason”… well, I would have really liked that a lot.

I know there are others out there who feel the same way. I want to reach those people. I want you to reach those people. I want those people to have someone that sees them for who they are and is willing to reach out one time and say “I have the answer you’ve been looking for.”

It’s never too late to find out the truth. It’s never too late to know yourself.

Autistic adults might be functioning in society just fine but that doesn’t mean that they’re functioning fine… inside.

Until you know, until you have a name for it, until you have an answer… you can never truly know yourself. You’ll always feel alone inside.

And no one should have to live like that. No one should feel like that their entire lives.

No one should live without knowing who they really are and what they’re capable of.

I know that now. And I want to share that with people that need to know it too.

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Autism advocacy of the future – our children

megaphone-300pxAutism has been around a very long time. It’s definition? Not so much. But even in the last 60 years or so, awareness has and even the definition of autism itself has changed quite dramatically over time.

It started with one doctor, then a couple of doctors and eventually a medical community that would dare to write about it and so on until today, we have parents and even autistics themselves emerging as, not really the dominant voice but certainly a loud and powerful one. At least, it’s getting there anyway.

It’s encouraging but I know that there is still a long road ahead. With constant battles between whether or not the “low functioning” or “high functioning” groups should get the more prominent voices, whether those that want a cure or those who want acceptance should be heard the loudest or most often… progress will surely still be made but there is no solution to the fights or even societal acceptance/understanding any time soon. There is obviously still a lot of work to do.

I have two children. One with autism and one without. I do not know if they’ll continue to advocate for autism in the future but if they do, I’d like to think that no matter which approach they take, that they’d be listened to.

One as a self advocate, one as a sibling, one as an autistic parent maybe and one, possibly as an autism parent. It’s in their genes, this I know. So the future is ripe with possibilities of any scenario.

I’d like to think that, if my advocacy has meant anything at all today, that one day in the future, no matter what their role, no matter which end of the spectrum or what their goals may be, that no one ever try to silence them.

If they’ve learned anything from me at all, then they will know that their own hard work, their own message, their own passion… that is what will drive them in the future. That is what will make them heard. That is what will move people to listen.

And most of all, no matter what, no matter who and no matter how much they try… never ever, not ever, let anyone tell you stop.

Both of my boys have a lot to offer and they still have a lot of growing to do. Should they decide to, should I do my job effectively, I can only hope that they would advocate together, as a team… an unstoppable force, instead of against each other.

Because that’s the kind of advocacy I want for my children, for all of our children and for the future.

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Autism Awareness of a different kind

Cameron and Tyler - Brothers

Cameron and Tyler – Brothers

I would like to take a moment to tell you about my son. Not so much for you to get to know him but to simply be aware of how hard it can really be sometimes.

My boys started indoor soccer this year. While my son stood there, shoulders up beside his ears and tears in his eyes, he’d repeatedly run to the bench where I sat for a big hug. He wasn’t afraid exactly, but he felt extremely uncomfortable. Meanwhile his brother ran up and down the gym, worked with his team and even got himself a goal!

At a friend’s birthday, my son refused to go and play with the others. It was laser tag, in the dark with a few bright lights and lasers and lots of loud children running around. It was all too much. For his senses and his fears. He chose to sit it out. While the children all laughed and talked over presents and cake, my son insisted on sitting with me at the end of the table where he didn’t interact with anyone else except to nod his head when asked if he wants cake.

When I drop my boys off at school each morning, my son stands there, begging to stay home. Begging to stay with me. Begging to “no school”, as he phrases it. As other children say hi and ask him to play, he ignores them. Not so much as a head shake or a shrug. He cries, his gaze focused on me. As I go back to my car, he ventures out of the school yard, to the edge of the road… this morning, he inched his way onto the road until I finally went back to him to insist that he needs to be there, that he needs to finish this one last day before we can spend the whole week-end together. It fell on deaf ears. As I leave once again, he trudges towards the school, head down, crying his eyes out and ignoring his classmates as they ask him if he’s ok or if he wants to play.
Meanwhile his brother barely sticks around long to get his backpack over his shoulder, running off as quickly as he can to soak up every available minute to play before the bell rings and summons them inside.

The son I’m talking about? His name is Tyler and he does not have autism.

His brother, the one that plays great soccer and is eager to laugh and play with friends is his brother Cameron, who does have autism.

Autism isn’t always as obvious as you might think.

Aware?

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