About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.
Author Archive | Stuart Duncan

Placing a value on a life

By on August 7, 2012 in Autism

Bullies see some people as having less value than others.
Racists see some people as having less value than others.
Sexists see some people as having less value than others.
Doctors see some  people as having less value than others.

Yes. Doctors.

Early this year, a mom named Chrissy Rivera wrote a blog post called Brick Walls which chronicled her battles with the children’s hospital there. Her daughter Amelia was being denied a life saving kidney transplant on the grounds that she was “mentally retarded.”

The doctors, using what ever measuring stick they had at their disposal, decided that young Amelia’s quality and potential length of life was of lesser value than other people that could use a good kidney.

The special needs community all around the world talked about Amelia’s story, signed petitions and even bombarded the hospital with angry phone calls and emails.

It’s been a long 8 months since that blog post was written but Amelia will be receiving a brand new kidney from her mother.

The story should end there, in triumph but sadly, it does not.

Paul CorbyPaul Corby, a young man of 23 is going to die unless he has a heart transplant. He knows this because his father died at the age of 27 from the same condition.

But doctors are telling his mom, Karen Corby, they won’t do the surgery because he has autism.

Actually, they claim that they don’t know how the steroids will react in his system, how he’ll handle multiple procedures and that taking care of himself afterwards is complicated.

In other words… because he has autism.

Again, doctors are using an imaginary measuring stick to place a value on a human life and determining whether or not it’s worth even attempting to save.

Here’s the problem with placing a value on a human life… it lessens all of humanity.

It’s sad and pathetic enough when your random low life does it to further their own gains but when a well educated and respectable person that has sworn to practice medicine ethically and honestly, to save all lives, does it, it really speaks volumes to just how much of a greedy, barbaric and filthy society we’ve truly grown to become.

Dr. Suess said it best when he said “A person’s a person, no matter how small.”

It doesn’t matter if you see a child, a senior, a disabled person, man, woman or anything else that you perceive a person to be; a person’s a person.

What you should be seeing is a life. A human life.

There is no measuring stick and there is no value.

All life is priceless.

It can not be measured.

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Please sign Karen Corby’s petition to get her son the surgery he needs: http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant

 

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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.

Comments { 29 }

Autism and empathy – Here’s another way to look at it

By on July 20, 2012 in Autism, General

EmpathyEmpathy:
The ability to understand and share the feelings of another.

There really is a severe lack of empathy where autism is concerned. Allow me to demonstrate.

  • You’re at a grocery store and your child has a complete meltdown and someone says “Can’t you control your child?”
  • You go to a restaurant and your child has trouble sitting still and someone says “Those people really need to discipline their child.”
  • You look really tired and worn out and someone says “Parenting can be tiring. You’ll get it eventually.”
  • You’re explaining the struggles that having an autistic child can bring and someone says “Oh please. All kids do that!”

Do I need to go on? Are you starting to see where the lack of empathy comes into play?

And this is just for the parents. Here’s a new list, from the autistic’s point of view:

  • Just go and play with the other kids. You’ll have fun if you just make yourself do it.
  • It’s not that loud. Just deal with it.
  • You’re doing it my way whether you like it or not.
  • Look me in the eyes when I’m talking to you. Stop being so rude.
  • You have to give me a hug or you don’t get what the others got.

Again, the list could go on and on. But I think you’re starting to get the picture.

I won’t even go into the whole bullying thing. I think it’s safe to say we can all figure out where the lack of empathy comes in when someone is bullied, autistic or not.

Yes, there’s a very distinct lack of empathy but it’s not necessarily coming from the autistics themselves.

Sure, some autistics might not understand the thoughts or feelings of others. But then again, some autistics might just not care. Maybe it’s because they don’t understand but maybe it’s because it just doesn’t matter all that much to what they’re doing at the time. Then again, maybe some autistics care very deeply and are just unable or incapable of expressing it.

That’s a very basic and rudimentary way to look at it. For more details and examples, check out Autism and Empathy.

The bigger problem, as I see it, is the lack of empathy towards autistics, not from autistics.

Instead of wondering if someone is caring about you or your feelings, consider how you can care for theirs.

That’s the great thing about feelings. You don’t need to get them to give them.

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Autism – The Struggles

By on July 18, 2012 in Autism

One thing that most, if not all, people can agree about autism is that it does present it’s share of struggles.

But what are those struggles? And for whom?

Parents

Normally a diagnosis comes at a very early age leaving parents to do what they feel is best as they attempt to make life altering decisions on their child’s behalf.

This means finding therapists, finding the right school, maybe battling that school, trying, finding and setting diets that will not only help but that their child will actually eat, and the list goes on.

It also often means some added traveling, lots of extra costs and even extra stress… especially if someone is preventing us from getting the services that our child needs.

If the child is unable to sleep at night, then the parent isn’t able to either. If the child is unable to attend loud restaurants or other venues, the parent isn’t able to either. If the child is emotionally overwhelmed, whether anxiety or depression or what ever, then the parent likely will be too.

Indeed, parents are often all to familiar with the struggles of having an autistic child.

It’s never more evident than when another parent tries to correct you, give you advice or worse, judge you for your decisions.

Autistics

The people that actually have the disorder have even greater struggles, many of which they likely find themselves unable to explain.

First there is the sensory processing issues. Whether too extreme or too subtle, an autistic child can often be found spinning around, hitting things, touching everything, watching things intently, screaming or moaning for no apparent reason or having a full blown meltdown. Sometimes it’s the lights, sometimes it’s the smells, sometimes it’s the feel of their clothes, sometimes it’s loud noises or consistent noises that seem like they’ll never stop and then there are times that no one will ever know what caused it. Possibly not even the child. There’s just something wrong and it’s too much for their system to handle.

Later there is communication issues, usually due to verbal skills often being delayed. Children want things but are unable to express those desires to their parents or others. Or, as I said earlier, have sensory overload but are unable to tell anyone about it.

Autistics often have issues with foods, whether it’s sensory (taste, smell or texture) or dietary complications such as sensitivities to gluten or casein. They also tend to have problems sleeping through the night, either prone to night terrors or just waking often due to an over active mind or some outside stimulus.

Autistics then have struggles with making friends, being understood as well as understanding others, being in social situations and all those other things that comes with being in school or having a job. Often a target for bullies, autistics tend to be victimized or even taken advantage of as they don’t really understand the motivations of others.

Then there’s dealing with people’s misconceptions (imagine everyone thinking you must be like Rainman), people assuming you must have a really low IQ or better yet, a really high IQ, people never being able to get over the mindset that “there’s something wrong with you” and even the much more simple, yet still struggle worthy, awkward moments where people just don’t know how to behave around you.

Where the struggle is not

Let me say this first, to make it perfectly clear, there really are some people, children and adults, that really are a handful. Sometimes people really are just extremely difficult to deal with as part of who they are and that’s how they want it… those people can be a struggle, whether they have a disorder or not.

Autistics are not the struggle.

You can classify autism itself as a struggle, if you want, but really, the real struggles are the situations and events that may or may not be due to the autism.

Look at it this way, when a child is born deaf, parents don’t see that child as a struggle. The communication barrier is a struggle. Learning sign language is a struggle. Finding the right services is a struggle. Having to afford special devices around the house can cause a struggle. But the struggle itself is not the child.

Likewise, with autism, the person is not the struggle, unless they go out of their way to be rude, unkind, unhelpful or what have you. But as a general rule, being autistic is not a valid reason to think of the person as the struggle itself, or the cause of your struggles.

If you are autistic: Don’t get down on yourself. You are not your struggles and your struggles are not you. The struggles you may face, maybe due to autism, maybe not, are situations in your life. Those situations are struggles. But each situation is a separate entity that can be avoided or overcome.

If you are a parent: Never treat your child as if they are your burden. Never tell anyone, not them, not others and not even yourself, that your child is the source of your struggles. They’re not.  Your child has struggles. You have struggles. Your child is not one of them.

heavy burdenNo, it’s not a matter of semantics or proper wording. It’s the way you look at a person. It’s the way you treat a person. It’s the way you believe a person to be.

When you think of someone as a struggle or a burden, you’re essentially reducing that person down to some kind of heavy load that will weigh you down as you carry them with you. And that’s not really how you see them. At least, I hope not. Because they’re not.

Make the conscious choice now. How will you see your child (if you are a parent) or how will you see yourself (if you are an autistic)?

A heavy load, weighing you down or a beautiful soul and a wonderful person that can lift the spirits of others?

Because that’s the choice you have to make. It doesn’t matter what struggles you have, it’s all in how you view yourself and others.

Once you make that choice, you’ll see just how separate we all truly are from our struggles after all.

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This person thinks that disabled people have no right to refuse a cure or treatment

By on July 14, 2012 in Autism

Imagine you’re talking to a group of people about disabilities. One person says to you that disabled people should be force fed what ever cure or treatment is available so that their hard earned tax dollars are no longer burdened by having to support those people.

What would you say?

“No moral right to refuse a cure”

While in a heated discussion on a blogs comments, two people exchanged opinions where one person, nicknamed “taxpayer” replied with this:

M@”Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability?”

From my taxpayer perspective the answer is No, they don’t have a right to be there. No one has the right to refuse a cure or a treatment that would make them less needy of state-sponsored services.

I would much rather see my tax dollars going towards a CURE, I would rather be paying to ERADICATE autism than paying for your wheelchair access barrier and many millions of wheelchairs to come.

So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don’t have any right to sit on a panel that was created to COMBAT that disability.

Sorry, I’m not going to link to their blog so you will either have to find it yourself to get full context (does context really matter for a statement like this?) or just take it for what it is.

money vs moralsTo paraphrase, and I don’t think I’m far off here, is that this hard working taxpayer feels that their valuable dollars are going to people who would rather keep needing more tax dollars than be cured and stop costing the system money.

From a strictly greedy, selfish, inhuman and egotistical point of view, this reasoning is actually quite understandable.

Still though, it doesn’t explain the “moral” part, does it? What does money have to do with morals? What does saving a buck have to do with morals?

Allow me to paraphrase once again, keeping morals in mind, just so that I can make better sense of this: “You and/or your child should not be allowed your basic rights nor have freedom of choice as it interferes with my wallet.”

Morals? All I see is irony.

How to respond? Let me count the ways!

So I got to thinking about how I’d respond to this person. I know from past experience that any response, no matter how articulate, compassionate, informative or insightful would basically fall on deaf ears. Excuse the disability pun. And the irony. Again.

I decided to do away with responding from my heart. I figure that this person would actually require one to be able to understand, much less relate to, my thoughts on the subject.

Instead, I figured it would make far more sense to appeal to their tragedy. They are obviously very hurt by this.

So here is my response to Mr or Mrs Taxpayer.

Dear “Taxpayer”,

My child was born with a disability and our entire lives are affected by it. There’s going to be some struggles just about every step of the way and yet we never get down or negative about it because we just love him so very much.

But please, tell me about how burdened you are by paying the same taxes I am. That must be devastating for you. Is there anything I can do to help? I hate to see you suffer so.

Sincerely,
A taxpayer too, but with a heart.

I would love to hear your responses to this person. What would you tell them if you could say just one thing to this person?

For more on this:
The disabled don’t have a moral right to refuse a cure or treatment?
You have no voice

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