Tag Archives | diagnosis

Why my child needs to know that he has autism

By on September 18, 2013 in Autism

I am an adult with Aspergers but I wasn’t always. Before I was diagnosed, at 36 years of age, I was an adult that was very confused, I had no self esteem and I was always extremely depressed. Before that, I was a child that was very confused, with no self esteem and depressed.

For the better part of my life, I struggled with my work, relationships, school, my appearance, friends… let’s just say that I struggled with everything. I hated life. But the part that I hated most was the feeling where, it’s not just that I didn’t fit in, I was the same as everyone else but I simply could not make anything in my life work right no matter how hard I tried and no kind words, medication, self help books or anything else could fix it. No one could tell me… what was wrong with me?!?!

Now, before I continue, if any of my family is reading this and it starts to make you feel like you let me down, don’t. You didn’t know, I didn’t know, no one knew. And considering how mixed up and down I was feeling that whole time and the fact that I’m still here, I’d say you did great!

My 3 greatest fears in life, listed least to most are:

  1. Death
  2. Being alone
  3. Feeling alone despite being with people and not knowing why

AloneWhen my son was first diagnosed with autism, I came to realize that many of his experiences mimicked my experiences. I wasn’t just reliving my youth the way a parent does through their children, I was reliving my heartaches. A lot of my past was suddenly explained to me as I started to put the pieces together. This was amplified a hundred fold when I was actually diagnosed. To this day I don’t know why but somehow, making it official, really opened my eyes to a lot in my life that had, up until then, remained unanswered.

I was bullied, I had few friends, I had bizarre obsessions and habits, I never wanted to leave my room and I remember every detail of every event that caused me pain, whether physical or mental. For example, I remember how I got the scar on my knee when I was 2 and I remember very well how I felt when my mom told me that I told an inappropriate joke before I was old enough to know it was an inappropriate joke. I felt terrible!

Still, I can take all that and more (which I am not about to list on a public blog) and very confidently say that it doesn’t even come close to the very overwhelmingly sinking and crushing feeling of being so completely and totally alone while with people that love you and want nothing more than for you to just feel good about yourself for once.

If this was a YouTube video, I’m sure most of their viewers would read that last bit and then comment to tell me that I’m just a moron and should just smarten up and listen to those people.  In a way, this is a good thing because it tells me that those people, and probably most people really, will never know just what that feels like and how impossible it is to do. That’s good, I think. I would hope that most people never really understand how that feels.

I’ve talked to a lot of people that are either waiting to or hoping to never tell their child that they have autism. They fear labels and they do not want to make them feel like they’re different or that there is something wrong with them. I get that, I really do, but take it from someone that’s been there and done that, they know. Believe me, unless your child is still two or three years old, they know.  But they can’t quantify it nor explain it and if it affects them even a bit like it did me, then they most definitely do think that there is something wrong with them.

Now, I want to stop right here and say that I know full well that all people are different, all lives are different and just because my upbringing was as I describe it, it is in no way a certainty that anyone else’s life would be the same. Still though, in my acceptance of this fact, I must also insist that you accept the fact that maybe, just maybe, it could turn out the same.

When you feel like you can’t ever have friends, you can never do anything right, everyone gets to be happy except you, talking to people comes easy to everyone but you, you’re a bully magnet, you can’t do or say anything right and life in general seems to not work for you, at all, ever, you KNOW you are different. You KNOW that something is wrong with you. But what you don’t know is why. And not knowing why is the scariest, most lonely feeling in the world.

I need to base my decision on my previous experience. I need to know that my greatest fears and feelings are something that I do not pass on to my son. I know now that I can’t protect him by keeping the truth from him.

My child needs to know because not knowing is a pain that I could never wish on anyone.

What he does with that knowledge is up to him. Will he come to accept that there really is nothing wrong with him, as I have? Having autism and being different doesn’t mean there is something wrong with you.  Will he seek out guidance and therapies to help him with friendships, work, love and life? I do not know. But at least now he’ll know what kind of help he’s looking for. I didn’t have that.

My greatest wish for my son, and everyone really, is to accept and love yourself. But how can a person accept and love them self if they never really know who they are?

 

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

By on April 7, 2013 in Autism

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 Numbers – Just how many people are being diagnosed with autism anyway?

By on March 20, 2013 in Autism

surveyA recent survey just came out (March 19, 2013), although the news is calling it a “study” which gives it more importance. That survey is abuzz around the world as people are now telling each other that the autism prevalence numbers are at 1 in 50 school children.

Very quickly, people took to social media in shock and dismay at these new alarming numbers. Some were even more scared than before of their environment, some were mad that the numbers were so high and yet being ignored and others shouted out “I am not a number!”

Still though, it’s just a survey. A phone survey.

A margin of error

In this survey, they phoned some 95,000 parents and of those, only 25% actually participated. And even then, chances are that only those with children that were diagnosed were inclined to take the survey seriously. Oh and let’s not forget, not all parents have photographic memories or even know as much about autism as they may claim to, so there’s that.

The big thing to take away here is, it’s just a phone call to some parents. They didn’t ask for nor look at any medical records or talk to any doctors or officials. They didn’t compare what a parent said to actual facts or reports. It was all based on the honesty system.

Now, that’s not to say that the numbers aren’t still alarming or even worth taking note of but for the media to make a big deal out of it… not so much. The truth is, the CDC probably should never have released such an unscientific piece of info as this in the first place.

This places into question the other studies, such as the one that found that 1 in 88 children are on the autism spectrum.

This one was done using medical records and in talking to professionals. But still, how accurate is it? Certainly more accurate than a phone survey but still, it still has a rather large margin for error itself.

Consider this, many people (children and adults alike) still go undiagnosed or even misdiagnosed. I’ve had two people, just this month, message me asking about getting assessments. One person, an adult, said that they are trying to charge her $1400 to do it. She can’t afford that and will likely go undiagnosed.

Another person, a parent of a child, said something similar. Because of where she is, they want “thousands” to do an assessment on her child. Again, that’s just not feasible.

Where I live, very remote, it’s actually quite difficult to get an assessment and even harder to get services simply because of geography. There are no major centers nearby.

Then you have the, all too familiar, doctors that seemingly either diagnose every child they get with autism to help them get access to services or never diagnose any children because they don’t want to contribute to the mass hysteria and hype.

There’s also the issue of getting the referrals for the assessment in the first place. I vividly recall telling my family doctor not once but twice that I wanted an assessment for my son and both times he insisted that my son did not have autism. After I returned with the official diagnosis, I gave him a book on what autism is. He is a good man, he read it.

But these cases are quite common. And should be considered.

Yes, it’s far easier to get a diagnosis now than it was 20 years ago and yes, some doctors are all too happy to hand out diagnoses like they’re Aspirins but the fact remains that as much as it is easier, it’s still not easy.

Many people still face a multitude of hurdles and even if those are met, there’s no guarantee that the diagnosis is a correct one.

And so the CDC sends out a team to pour through the paperwork of this whole mess and make some sense of the numbers.

The result, as I said, is far more accurate than a survey with random parents but it still has it’s own margin of error.

On the plus side

So what good can come of wrong or even inflated (maybe even under-estimated) numbers?

Well, services for one.

Many times these alarming numbers can spur a person into action, giving them the drive and motivation needed to start a new program and provide a new service that was lacking before. They see this large number of children that need help and they decide that something has to be done.

Sometimes, rarely but sometimes, these numbers can even push autism up as a priority during government meetings and help in funneling a little extra funding towards the autism community.

One thing it most definitely does is raise autism awareness. Even if it’s very negative, in the form of fear, it still prompts new parents to find out more. And that can lead to an earlier diagnosis for their child and as we all know, early intervention is key.

A grain of salt

So keep in mind that when you read these news stories or “studies” that there is always a margin of error. There is always a certain portion of it that is inaccurate and that there is always a positive and negative side to these things being out there.

Shutting them down may prevent some services or information from ever being out there but promoting these things may also perpetuate unnecessary fear and maybe even harm, if it pushes more people to stop vaccinating or even from having children at all.

Think of it this way… it’s just a bunch of egg heads fiddling with numbers and proving… nothing.

And the media is doing its best to turn it into a news story that will get you tuning in.

When you see it for what it is, it doesn’t seem so bad.

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A Road Map for Autism

By on September 13, 2012 in Autism, Parenting

From the first moment a child is diagnosed with autism, parents find themselves catapulted into a chaotic world of therapies, alternative treatments, and doctor appointments. We are left to fend for ourselves as snake oil salesmen try to take advantage, book authors offer conflicting points of view, and everyone from the family physician to Great Aunt Hilda offer their opinions on our children and our parenting. Sometimes these opinions are informed, and many times they are not. We often exhaust ourselves running through what feels like a rat maze, in search of answers or at least some advice that actually helps. We develop our own opinions, fend off curious strangers in the grocery store, and probably find ourselves engaged, on several occasions, in World War III via internet message boards.

 

All of this happens because we don’t have definitive proof of anything. What causes autism? What is the best method of treatment? Which therapies work, and which ones are a waste of time and money? What path do we take when there are so many options, none of which have a clear end point? All of these questions remain a mystery. As scientists work to unravel the causes and possible treatments for autism, we parents are scrambling to find our own answers. There is this sense of fear pervading every choice we make: Am I doing enough? Is this the right choice? Is this even working? What if I don’t do it, and I find out later this is the best treatment? What if I miss a crucial window of development?

 

This may be the most difficult part of raising our children. The fact that we don’t have a clear course of action laid out for us means we are often confused, overwhelmed, and fearful of doing the wrong thing or not enough of the right thing.

 

On the other hand, it can be a blessing in disguise. It’s a bit like taking a trip without a roadmap. Yes, it can be stressful and we may feel lost at times. But we also end up exploring down side roads we may never have noticed otherwise. We see and experience things off the beaten path, and make discoveries of our own. Along the way we find what works for our children and adopt those strategies. Through trial and error, we also learn what does not work, and we are free to discard those treatments and move on.

 

In the world of raising children with autism, no two paths are alike. For my family, I found that enrolling my sons in an intensive, autism-only preschool had a huge impact on their development. They learned, from professionals specifically trained in autism interventions, how to communicate well enough to convey their basic needs. They learned how to sit still (mostly), pay attention, and work independently when required. All of these skills served them well when they were later mainstreamed into regular elementary school classrooms. Now that they are capable of mainstreaming in their school environments, they are learning more speech and social skills from their typically-developing peers.

 

I also moved the family to a tiny mountain town with a small public school system. There are only about 15 to 20 kids in each grade, and my sons are recognized and understood when we are out and about in the community. I found that this lifestyle led to an absence of bullying, and a lot of understanding and inclusion. We also immersed ourselves in the natural beauty of our surroundings, with plenty of hiking, swimming and other outdoor time, which has helped their sensory systems regulate. I didn’t read about this in a book. It was just something I felt, intuitively, that they needed. And it worked.

 

Other families are taking completely different approaches. They mainstream in preschool, or they don’t mainstream later. They live in bustling cities with access to everything they can imagine. Their children attend huge schools with hundreds, or even thousands, of other kids. Their paths are different, but they are finding what works for them as well.

 

Maybe there is a lesson we can take from this. The treatments for autism are as diverse as our children, and there is no set formula that will always work for every kid. The most important strategies aren’t found in books or on websites, but are innate qualities we can all embrace in ourselves. Follow your intuition. Listen to your child. When something works, keep doing it even if you feel silly. If it doesn’t work, discard it and move on. Respect your doctor’s opinion, but also realize they don’t have all the answers yet. And whatever you do, don’t worry about what Great Aunt Hilda thinks. The best advocate for your child is you.

 

So get in the driver’s seat, buckle up, and get ready for an adventure. There is no road map for autism, so you’re going to take some crazy side roads and wacky wrong turns. Sometimes you may find yourself alone on the road, and at other times you may ride in a caravan. You probably won’t take quite the same path as anyone else, but the path you do find will be the right one for your child.

 

 

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My advice for parents that have just received their child’s autism diagnosis

By on July 23, 2012 in Autism

One of the more common questions I get from people that give seminars, write journalism columns or otherwise somehow speak to many people at once is, “what advice would I give to parents that have just had their child diagnosed with autism?”

Here it is, in 4 parts.

1. Be selfless

When the doctor says those 3 scary little words “Autism Spectrum Disorder”, your heart sinks. No matter how positive you are, no matter how optimistic and no matter what great things you’ve heard about autism… it’s a heavy weight to bear.

In that instant, all of our hopes and dreams for our child are lost. We see a little human being with all of our visions of the future beyond their grasp. We see a child that will never be all of the things we thought they could be.

The thing is, those are our hopes. They are our dreams. They are our visions of the future. They are what we think that child should grow up to be. Us… us… US.

Letting go of that is hard. Some parents are never able to let that go.

But you have to realize, that’s your selfish side speaking. And I’m not saying that it’s not ok. It’s perfectly understandable and acceptable to be selfish where it pertains to your child. We all want what’s best for our children. We all want our children to reach for the stars and beyond.

But, you see, they will reach for the stars. It’ll just be in a different way.

They might not grow up to be like mom or dad and they might not even grow up to do all the other cool things you’ve imagined they could do but what they do decide to do, will be amazing.

They might not be your dreams or what you envisioned but, if you learn to let go of that and support your child in their dreams, you’ll find that nothing was ever truly lost.

You may be saying, “that’s all well and good for children that progress well and go to school and can manage on their own but my child will never have that”, it is not my intention to dismiss your burden. And all of the things I’m saying here will still apply. It will just be even harder still. And to you, I’d like to address this further in the next part…

2. Take stock in what you have

Sometimes I meet parents that are just so dark. They feel like they’ve lost everything and that their child was lost to them. They really believe that autism has stolen their child and ruined their future. And it hurts. It hurts me because no one should ever have to feel that way. And there’s nothing I can say or do that will help them.

But maybe, if a parent who is on the path towards feeling that way can be reached out too, perhaps those feelings can be prevented or avoided.

I’d like to tell you about my visits to Sick Kids Hospital with my son. One time for surgery and one time for allergy testing.

Walking through a place like that, you see children without hair and looking very pale and weak. You see children missing limbs or even an eye. You see children that are unable to see, hear and even those that are unable to move.

The hardest, I think, is seeing parents that are holding each other, crying so hard that in one moment are crying out louder than you’ve ever heard and in the next moment, crying so hard that they can’t even make a sound.

They moved into the hospital to be with their child in those final months, sometimes years. They know real loss. They’ve lost their house and jobs. They’ve lost the lives they once knew because for the time they’ve been in there, life has moved on without them.

But their child was worth it. For as short as their life was, it was a life. A beautiful and wonderful life and that life deserved to be loved. That child struggled for every day that they could.

For those parents, it was hard. Very hard. Harder than I could ever imagine it being and will probably, hopefully, never truly know.

But being there was worth it.

The reason I’m saying this is that, whether your child has autism or not, your child is right there, in front of you and your child needs you to be there with them.

Don’t be off fighting your battles or mourning your losses. Instead, move in to their room and be there with them.

Yes, you could take away from this story that things could always be worse or that they could always be better but that’s not what I’m trying to tell you. Instead, do as those parents did, do as they wish they could continue doing right now.

Take stock in what you have and live it. Your child has autism. It’s not a death sentence, it’s not an ending. Their life will be different than what you expected and it might even get really hard, but your child is right there wanting you to be a part of it.

3. Support is where you give it

It might not seem like it at first, when you know so little about autism or the struggles that it will bring, but your experiences are already and will prove to be quite valuable.

Every day, people are sharing their stories online and in support groups and one day, if you’re willing, that could be you.

Right now, someone is wanting to hear about the process you had to go through to get the diagnosis complete. Someone is wanting to hear about how you are feeling right now. Right now, someone is wanting to hear that they’re simply not alone.

If you are willing to reach out, even just a little bit, people just like you will be wanting to reach back. But if you close yourself off and bury yourself in that feeling of being so very alone, which we all feel (it’s not just you), you’ll miss all of those shared stories and all of those shared experiences. That one smiling face or reassuring word that you needed at just the right time will be missed unless you are willing to first step out and offer a warm smile too.

Autism is so very different from person to person, family to family, life to life but at the same time, we all share something so common and so fundamental that we already have this bond that we only need build stronger… and that’s our children. Our children need us.

What more reason do we need to support each other?

Unconditional love4. Love unconditionally

Whether your child has autism or not, can remember Pi to a thousand places or bangs their head against the wall, will go on to big and successful things or live out their days in a care facility…. no matter what, you must love your child unconditionally.

Many people say it as just a figure of speech or, while understanding it’s meaning, don’t really take into account the real scale of it.

Loving unconditionally does not mean that you love your child despite autism. Loving unconditionally means that you love your child with autism.

That no matter what your child does have, doesn’t have, does do, doesn’t do, will become, won’t become, who they were, who they were not, none of it matters, not one piece of any of it will ever take away from who your child is or the love you have for them.

You don’t get to love your child except for the part of them you don’t like. That’s not how “unconditionally” works.

When you fall in love with your true love, your soul mate, your bride or groom to be for the rest of your life, you accept them at their best and their worst, they’re best features and even their faults. You love them for who they are and wouldn’t change a thing.

The same thing applies, even more so, for your child.

Love your child for who they are, not for who they are even though you wish they could have been someone else, or someone more. Love your child for what they can do, right now, not for what they can do even though you wish they could do more.

Love your child. Period. Just love your child. Your child is perfect because your child is your child.

One day, maybe not today and maybe not tomorrow but one day, you’ll look back and realize just how much of a difference that really makes. It may seem like such a trivial thing at the time but it’s not.

One day, your child will look back and will know that they were never meant to feel like less than they should be. They will never feel like a disappointment in your eyes. Not even a part of them. They will never feel like they were the cause for your lost hopes and dreams.

What you do today, by truly loving unconditionally, will be your autistic child’s source of strength in years to come.

Do you see how important that is? Do you see how powerful that is?

What I’m saying is, without true, real unconditional love, one day, your child will believe less in themselves than they should, than they really need to, because they’ll look back on all the times you were disappointed in how they were less than they should be, less than you wanted them to be. And they’ll doubt themselves. They’ll feel what you felt.

And it won’t be the autism that holds them back, it will be because of the flaws and faults you saw in them that whole time. They’ll believe it because you believed it and it will stop them from achieving their true potential.

I know, if your child was just diagnosed, that’s a lot to take in and it’s even harder to do. Chances are it will take time and even though it seems like a roller coaster of a ride, you do have time.

Just keep it in mind. Loving your child, unconditionally, truly unconditionally, could be what makes the biggest difference in their life. Not the autism or any other struggles that autism can bring.

Your love. It’s just that powerful.

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