Tag Archives | parents

Who has a right to talk about Autism?

By on September 17, 2011 in Autism

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

Comments { 13 }

My own little world – Important place to be but don’t get lost there

By on September 8, 2011 in Autism

The phrase “own little world” is often used to indicate ignorance, that a person has no idea what is going on in the world outside of their own life.

I like to think of it more as an indicator as to what is important. You see, what ever is happening in my own little world has the utmost importance to me. It’s what I know best, it’s what I care for most and it’s what is most important to me.

There’s nothing wrong with your own little world, everyone has one and everyone should be proud of theirs.

My own little world

our own little worldFor me, my own little world consists of myself, my wife, my children and my pets… that’s it. That’s what I know better than anyone else, it’s what is more important to me than anything else and it’s what brings me the most joy.

For some people, it might be only their children, only their spouse… it may be just themselves, if they are focusing on their own happiness before starting or without having a family.

You protect your own little world even if it means getting a little bloody because there’s nothing more important in the whole world.. than your own little world.

But…

Don’t forget there is a bigger world out there

I find that, especially when it comes to parenting, and 10 fold more when it comes to Autism, people easily get lost in their own little world.. and when they step out and look around, they forget that things are different out there.

I know I’m not telling you anything that you don’t already know, but we all need reminders sometimes. Hear me out for a minute…

We Autism parents write about our experiences and sometimes, when we’re lucky, we write something that you can relate to.  However, the very nature of Autism, as we all know, is that the experience is different for everyone.

This presents a very interesting problem…  we write about our own little world, which doesn’t match up with other people’s little worlds… there are two possible outcomes:

  1. One or both parties recognizes that their own little world is different, accepts that fact and either does not comment or does comment, stating how their own experience differs
  2. One or both parties denies the existence of the other person’s little world, proclaiming that they are liars, misguided, ignorant or just plain wrong and that they are doing a great disservice to the entire world (which I’m assuming is their reference to their own little world but we both know it isn’t)

More often than not, I see #2 all over other people’s blogs. (pun intended)

Take a deep breath

The problem with this is that it requires both parties to remember and recognize the “my own little world” phenomenon and take a deep breath, relax and accept that we all have different experiences with differing opinions.

Not just both parties, but many many parties… the more popular a blog becomes, the more that little worlds come into contact with it… some of them collide.

Just this morning I tweeted: Autism is like a rainbow; it has a brighter side & a darker side, every shade is important & beautiful and it hides something golden.

To which, one angry parent was rather mad that I’d call it a rainbow (I didn’t, it’s a comparison), proceeded to remind me that Autism is a serious disability and that “fluff” like that doesn’t help those who suffer from Autism.

He didn’t take a deep breath.

He completely skipped the “darker side” reference as well as the part that says that it “hides something golden”. I mean, yes… I’ll admit to the “fluff” but it’s not all peaches and cream either. I felt it rather adequately expressed the darker points… the “suffering.”

Anyway, as I said, he didn’t take a deep breath, instead acting instinctively to attack me for not telling his story… for not telling everyone about his own little world.

However, that’s not my place. I can’t tell other people’s stories for them.

And so…. I take a deep breath, and I remember that his own little world is what he knows and is what is more important to him. In his way, he’s protecting that.

My own little world is different. I can accept that.

And when I read about his experiences and his story… I’ll remember to respect that his own little world is vastly different than my own.

Please keep in mind that, what you experience in your own little world, might not be what someone else experiences. Their story is completely different. They share their story, not to fight with you, but to show you just how different things can be… and maybe, sometimes, just how much the same they can be too.

Take a deep breath. Your own little world is not threatened by others sharing their own story. Your own little world is still your own, you still know it better than anyone… and most of all, it doesn’t mean that anyone thinks you are ignorant of what’s going on outside of your own little world. At least, it shouldn’t.

Just take a deep breath. In fact… you should rejoice that no one else’s little world is the same as yours. If it was, it wouldn’t be your own.

Comments { 6 }

Does person first language indicate a lack of acceptance?

By on September 2, 2011 in Autism

I really had thought that I was done with the topic of “person first language”. I really had thought that I had said all that I had to say. But then last night, someone said something to me that brought me right back into it.

I tweeted this “People with Autism are not damaged nor defective. With your understanding, acceptance & guidance, their potential is unlimited.”

This prompted one parent to respond in agreement but also added in this: “my son is not autistic he has autism”

For some reason, this response kept me awake last night.

Do you truly accept your child?

I’ve never been met with person first language in agreement to understanding and acceptance of a child with Autism… somehow, it just really struck me as odd, like it was contradictory in some way.

All I kept thinking was, if you truly understand your child has Autism, if you truly accept that your child has Autism… you’d have no problem with saying that they are autistic.

What is acceptance?

acceptanceAcceptance is a funny thing, because it tends to mean different things to different people, or have different meanings in different situations.

For example, when my son was diagnosed with Autism, it took a little while for me to fully accept that diagnosis. I had to accept that he had a disorder, something that I couldn’t fix.

It wasn’t until much later that I had to accept that he had Autism. While it sounds like I had to accept the same thing twice, it’s very different.

I accepted the diagnosis the first time, but then later I had to accept the fact of life, the fact that his life was going to be different, that I’d have to parent him differently, that there would be very different struggles for me compared to other parents I know and more so, to accept that my child was going to be different.

I had to accept that Autism was a part of who he is. I had to accept.. that he was autistic.

While some people think they have accepted the same thing I have, they may actually be referring to one instance of acceptance while I am referring to another, even though we may both think we’re talking about the same thing.

The funny thing about perception

It occurred to me that when a person pushes “person first language” on others, it’s because they do not fully accept their child. Well, more to the point, they don’t accept the Autism that is within them. To them, the person and the Autism will always be two separate things. That the person can’t be autistic because that would be accepting that Autism is a part of who they are.

So I asked myself why that is… which lead me to think of it another way.

What if that person had natural born artistic ability. Would that parent refer to their child as “a child with art” rather than an artist?
What if that child had a natural born aptitude for math? Would the parent refer to their child as “a child with math skills” or a mathematician?
What if the child had a natural born ability to play music? Would the parent refer to the child as “a child with musical ability” or a musician?

Then it dawned on me… it’s because the parent would accept those skills… those “gifts”. Those are all clearly good things. There is no negative implications what so ever in regards to having those things be a part of who those children are.

But with Autism, there is a negative. There is a down side.

Nonetheless, Autism is still just as much a part of who that child is much like the art, math or music… in fact, I’d argue that Autism is more a part of who they are. Autism affects every aspect of a person’s life since, in reality, it affects all aspects of a person’s input, output and interpretation of the world around them.

But it’s often negative. It’s not often thought of as a gift.

And so, it’s not as easily accepted. It’s not as easily made into an adjective… like musician is.

We don’t see a child and his musical ability as being separate, even though playing music is just an ability.

Meanwhile we do see Autism as being a separate entity, as not being a part of them, because it’s a disorder. While in reality, this makes it more a part of who they are than any one ability does.

What about those with Autism that use person first language?

There are some people with Autism that use person first language because they hate how Autism has affected their life. They hate how difficult it has made things that every other person takes for granted. They hate how Autism has made them feel like an alien on their own planet.

I can understand that, I can sympathize. Still though, I think I could also argue that we have all felt that way at some point. Not to the same degree and not all of our lives, but at some point. Most likely when we were awkward, rebellious teenagers.

Anyway, the point is, while I can understand that feeling and the need to reject the cause of such heartache and struggles, I would also argue that at some point, that person could come to terms with their weaknesses, empower their strengths and move forward if they learn to love who they are, learn to love their unique perspectives and talents and learn to love every bit of themselves… including the Autism.

Many people hate who they are, this is especially true in autistics, but sometimes it only takes the right person, the right moment, the right miracle to cross your path to show you what there is to love about yourself.

I think that if that happens… when that happens… even a person with Autism can come to accept, and love, being autistic.

Does that mean that people shouldn’t use person first language?

Person first language does have it’s place. And of course, I understand a parent’s need to believe that their child is their child… not a label, not a diagnosis.

I also understand that acceptance is far more complicated than simple terminology.

While person first language will never go away, and is not always black and white, and does have it’s place (such as in legal documentation, schools, governments, etc)… I do still believe that it can be a very clear indicator about a person’s level of acceptance of that person.

While not a guarantee, because some parents truly do accept their child through and through, Autism and all… and still prefer to use person first language… I do feel that in most cases, it does show where they are on their path to true acceptance.

I would ask of those parents; if your child, at some point, shows a sudden aptitude for music, and it’s due to their Autism… would you refer to them as a musician? An autistic? or both?

Think about this…  have you ever noticed that no one has any problem with the term “Autistic Savant”?

Have you ever heard anyone insist on “Savant with Autism”?

When it’s a good thing, no one has a problem with it.

Comments { 14 }

The life of an autism parent advocate

By on August 21, 2011 in Autism

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

Comments { 4 }

How many beautiful lives will go unlived due to Autism studies?

By on August 17, 2011 in Autism

The latest Autism Study of the Month is about the likelihood of a younger sibling having Autism when there is already a child in the family with Autism.

I had already discussed how important it is to make family decisions with your heart, not your fears… and how there is always some risk no matter what, even for your first child.

But seeing Google News explode with story after story about it… approx 700 at the time of this writing… I have a new concern.

No FearSpreading Information or Paranoia

At 700 articles, I have to wonder just what message it is that is being sent.

Most studies are negative in nature, focusing on what may be increasing the risks of Autism, but in this case, it’s outright telling people that their next born child will likely be Autistic.

With headlines such as “Parents with one autistic child more likely to have another”, is it really any wonder what the message is?

These studies are important because it brings experts a little step closer to finding real answers but in the general public and in the media, it’s a tool for fear and paranoia.

How many parents will these 700 articles reach?
How many of those parents will make a conscious decision to not have another child based on this study?
How many parents will have their family forever impacted by fear?

The Result of Fear

So you’ve decided to cut your family short for fear of having a child with Autism… let’s discuss:

  • The study found an 18.7% chance of having a child with Autism when you already have a child with Autism. That means that you have an 81.3% chance of having a child without Autism.
  • Is the child you already have beautiful? Amazing? Wonderful? Your next child will be as well.
  • If you only have one child, will you be improving that child’s life or robbing them of a loved one that they can love, cherish, grow with, protect and depend on?
  • Would your child have had the potential to be brilliant? A leader? Inspirational? An artist? A parent?

Lost Potential

I’m not trying to tell you that you have to have another child. If you were already debating/discussing it prior to this or other studies, that’s perfectly understandable. My wife and I did the same thing.

But basing these decisions on the fears created by studies in the news saddens me.

I can’t help but think of the lives that will never be lived, due to fear. The people that could have been presidents, doctors, teachers, parents or even, if they did turn out to have Autism, would have been beautiful people regardless of the titles they could or could not obtain.

My child with Autism is wonderful, he’s amazing! Why would I choose to not have another child when I have such a beautiful life growing before my eyes?

Children, all children, with or without Autism, have limitless potential. Even those that are non-verbal can sometimes surprise you. You just never know what can happen.

Let’s Talk Odds

Since we’re discussing odds, let’s look at some other odds for you and your children:

  • Odds of being the victim of serious crime in your lifetime: 20 to 1
  • Odds of having your identity stolen: 200 to 1
  • Odds of dating a millionaire: 215 to 1
  • Odds of finding out your child is a genius: 250 to 1
  • Odds of being considered possessed by Satan: 7,000 to 1
  • Odds of becoming a pro athlete: 22,000 to 1
  • Odds of winning an Academy Award: 11,500 to 1
  • Odds of becoming president: 10,000,000 to 1

These are some great reasons to be living in fear, to be living a goal, to be optimistic, to be pessimistic and simply… to be alive.

You can’t beat the odds every time, you won’t be a victim of the odds every time either.

The point is to live your life, to enjoy your life and to do with your life what you can while you can.

Don’t snuff out the potential of your children before they ever even have the opportunity to be conceived.

If you want another child, if you want to fill your family, if you want our child to have a younger sibling… do it.

Do not replace potential with fear.

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