Autism awareness? I live it every day

Not a lot makes me cringe more than seeing/hearing/reading a parent of a child with Autism say that they don’t bother with Autism Awareness Day/Month because they don’t feel they should tell others about Autism since it doesn’t affect them.

autism awarenessI’ve read more tweets and posts this month than I’d like to from parents giving a multitude of excuses why they haven’t gotten around to it, or haven’t bothered or feel that they simply shouldn’t attempt to raise awareness of Autism… and that’s kind of sad.

How can a person recognize the signs in their own child unless aware?

There’s a lot of debate within the Autism industry as to whether or not numbers have risen (at least in part) due to the fact that people are simply more aware of what to look for, recognize it earlier and thus, are more likely to get an official diagnosis.

There’s good reason for that debate.. it’s because it’s true that greater awareness is what leads to people being able to understand why their child won’t look them in the eye, doesn’t respond to their name, doesn’t talk yet, separates their blocks by colour and lines up their toys in a perfectly straight line across the living room.

Finding the support and information they need

After a diagnosis, most parents feel extremely lost as they’re put on waiting list after waiting list and worse than finding no answers, they find a lot of contradicting answers.

If you and I didn’t speak out, and speak loudly, they’d never find us. And if they never found us…. well then, they truly would be alone.

Waiting lists don’t explain to parents the benefits of weighted blankets, the gf/cf diet, the necessity for strict routines, how to handle IEP meetings and so on and so on.

Will your child forever be a freak or will people understand him/her better one day?

How can we expect parents to stop judging us and our children during those grocery store meltdowns if they never learn about Autism? How can we expect our childrens teachers to have more patience or even recognize the signs themselves? How can we expect more random people to step up and offer gymnastics, swimming, skating and other community type programs just for our children with Autism… simply because they want to help?

People won’t just look at your children differently… they’ll look at them as weird, freakish or even worse because if they’re not aware, what else are they supposed to think?

Conclusion

No, maybe the meltdown happening in your living room isn’t anyone’s business but that of your own family but that shouldn’t mean not raising awareness at all.

By not doing your part, you may be leaving one troubled child undiagnosed… you may be leaving one parent lost with no one to turn to… you may be letting some innocently ignorant person incorrectly judge another person, making them feel like a terrible parent.

Worse than all of that, you are indirectly affecting your own child’s future because one day your child will have to face those people you didn’t bother to share your burden with and those people won’t understand him/her. Those people will judge your child and judge them harshly.

They say that if one person recycles everything, little change is made in the world but if everyone recycles just one thing, a very significant change is made in the world.

Same goes for Autism Awareness. You don’t have to get on national television or scream from the rooftops… it’s not about invading people’s lives. It’s about sharing so that those that want to listen, those that want to hear it, those that seek it out… can find it.

You may live it every day and those you’re attempting to educate don’t… but maybe they will one day. And maybe, just maybe, your voice will be the voice that makes a positive impact on their lives that lasts a life time.

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Thank you for an amazing week!!

What a truly amazing week it has been..  no seriously, truly amazing. I’m a bit overwhelmed. Not just because I’ve been so busy, writing a LOT for people and changing jobs but more so in the support and recognition that I’ve received.

6 days ago

While browsing Facebook, I noticed someone post a link to the Top 30 Facebook Fan Pages by Babble.com and thought, hey.. I have two of them, but there’s no way I’d make it. Perhaps I’ll check to see which pages did make it though.

To my surprise, one of my fan pages did make it! Listed at #24 out of 30, my Autism Understanding and Acceptance page had made the list, and was even #6 in the “best for activism” category.

5 days ago

In a 4 part series on Autism, The Talk on CBS has dedicated each of it’s Friday episodes in the month of April to Autism and on April 8th, focused on the “forgotten parents” of Autism, the dads. This lead to a FollowFriday shout out not only from their Twitter account, but also on television!

1 day ago

I received an email from RNCentral.com mentioning that they created a page listing “50 Blogs you should Bookmark for Autism Awareness Month” and that my blog was included!

today

Once again, while surfing around, I came across the Babble.com article called “Top 25 Autism Spectrum Blogs” where once again, my blog was listed! Coming in at #21 and #6 in the “best from a dad’s perspective” category… you can see my blog listing here.

Believe me when I say that I’m truly honoured to be recognized but more so to be included among so many other amazing blogs and fan pages. And none of it would be possible without wonderful people supporting me… by reading, commenting, sharing with me… you all have encouraged me to keep this up and keep sharing.

It’s amazing comments on Twitter and Facebook where other parents thank me for sharing my story and advice… positive feedback from people that read this blog means far more to me than any “top x” lists but making those lists is a great indication of just how much of an effect that you all have on me and this blog.

So thank you RNCentral, Babble.com and to you… perhaps something I said one time might have had some sort of impact on your life, however big or small, but your being here and reading makes an impact for me every single day.

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Autism and the honest opinion, where does it all go wrong?

Normally I write posts to help describe Autism traits to those without Autism but recently, I was asked by @ThatSPKid about a previous post I made called “Do you really want my honest opinion?

So I thought I’d take the opportunity to change it up and explain to those with Autism a trait that the rest of us share (well, most of us anyway).

The problem

You have a friend or loved one that asks you a seemingly trivial question, usually about themselves personally. Some of our favorite questions include “how do I look?”, “do I look like I’ve gained weight”, “what do you think of what I’ve done?” and of course, “do these pants make my butt look big?”

You get the idea.

The problem here is that a person with Autism is likely to answer honestly… the first answer to enter their mind, the obvious answer, the honest truth, is likely to be what leaves their mouth.

Chances are, unless the person asking is a super model, and even then, they’ll likely not want to hear the truth.

What a person really wants

When a person asks for a personal opinion from someone, unless they are very secure and confident in themselves, will likely not be able to handle the absolute truth, unless they truly do look fabulous and your opinion of them really is a perfect 10.

When a person asks a self gratifying question, they do it because they want re-assurance… or, as I like to call it, ego stroking.

If a person asks about how they look, that means that they’re concerned and need you to tell them that they’re just being paranoid and that they look great.

People know when they’re fat, they know when their look is questionable, they know when the artwork they did is amazing or not.. what they want from you is to reassure them, validate their feelings or simply… to give their ego a boost.

Why so upset?

Some people are more than capable of hearing the truth and may accept the fact that you find they look fat and therefore will simply choose to wear something else or hit the gym after… and they won’t be upset with you in the slightest.

But those that aren’t so secure in themselves won’t take it so well and very likely will get upset with you. Not because they think what you said was untrue but it’s because they already knew what you’re saying, they just wanted you to make them feel better and you didn’t.

For no real rational reason what so ever, they asked you a question to which they knew there was a good chance they’d get a negative answer, especially if they already knew it to be true, and yet they asked it anyway anticipating you to make them feel better about themselves.

How do you know when to say the truth?

For the most part, a person will make it very obviously clear that they can handle the truth and if they do and still get offended, then you know not to repeat it next time. But if they take it as constructive criticism and don’t get mad then you’re free to be yourself.. your honest self.

However, it’s a good general rule of thumb that anyone, anywhere, that asks a question about what you think about them, their weight, their look, something they created and so forth is simply looking for your appreciation… you to give their ego a boost.

If you do tell them they look great or what they created is wonderful and they push you further, asking if that’s really your honest opinion, then it’s ok to give more honest feedback.

Encouragement or Discouragement

In the case of a person’s efforts, your honest opinion may make the difference between whether or not a person is encouraged to do better next time or discouraged from ever doing it again.

My children are a perfect example, which is what I used in my previous post. My 3 year old (Tyler) put a bunch of blocks together in what he felt was a nice pattern. He showed my 5 year old (Cameron) with all the pride a person could possibly have to which Cameron replied that it was nothing and just dismissed it.

He was right, it really was nothing. It was a 3 year old putting blocks together in no real pattern or anything.

However, my 3 year old was proud of it and would very likely continue to play with his building blocks and get better and better.

With proper encouragement, he could one day become an architect or engineer should he continue to enjoy working with building blocks. But if he shows off his work at the age of 3 years old and is discouraged from ever trying again… well, becoming a builder is likely not to be in his future.

In this case, someone that does not have enough expertise is not going to put together a masterpiece but is looking for positive feedback simply to help encourage himself to proceed further, to keep trying harder.

Anyone that is just starting something is likely to do poorly at it, but relative to their experience level, it might be right on par to what they should be able to do. And when they come to you for feedback on it, they’re looking for that encouragement. They need to know that they’ve done well and their work is “amazing”… because it will give them that push to keep at it.

Conclusion

There’s no perfect science to this… everyone is different and some people really want the honest truth and that will be what motivates them to look better, lose weight to try harder… but for the most part, it’s a safe assumption to say that the person just wants you to tell them what they want to hear.

And what most people want to hear is something that will make them feel proud, feel happy and feel encouraged. Appreciate is what feeds most of us what we need to push ourselves harder… we’re not nearly as good at taking constructive criticism as we tell people we are.

Put it this way, when someone asks you a personal question, think of it as a multiple choice question. There is a) the truth and b) what they want to hear.

Unless ‘a’ matches ‘b’ (the truth is what they will want to hear) or they’ve proven themselves to be very good at handling the truth without being offended… you’re probably best off taking a moment to consider both options before giving your answer.

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I got my first “I hate you” from my son

My son had quite the meltdown yesterday when it came time to turn off his game. It was a combination of losing, his cousin not doing what he wanted and being told it’s time to turn it off. It was just too much… when he broke the game remote and started calling everyone the worst words he could (stupid and dumb are about the harshest words he knows) is when I had enough and gave him a time out in his room.

Don’t make any mistake, this was quite the meltdown and I didn’t get mad… I just removed him from the living room to give him time to cool off. That’s when he yelled back that he hates me.

Now, I tweeted about it shortly afterwards… not that it hurt me, but that I it happened. In my mind, it was as if I had finally joined the club… because most parents have heard this from their children… Autism or not.

Children in general have no filter on the things they say. They don’t know what “pushing it too far” is… they just know they’re mad and they need to express it in the loudest, most hurtful way they can. It’s only in time that they learn (hopefully) how to dial it back, how not to say things that they don’t really mean just because they’re filled with so much emotion.

We as parents can’t take it personally… we all know that it’s simply a reaction and that once they do cool down, all will be back to normal.

However, it can be a bit more extreme when Autism is involved. The yells are louder, the rage is more intense, more things are likely to get broken and in some cases, someone can easily get hurt.

After I tweeted, a lot of parents tried to console me… telling me it’s ok, he still loves me… which I shrugged off. I tweeted it with pride, not pain. I wasn’t proud exactly, wrong word, but as I said, I felt like a part of the club now.

Anyway, upon reflecting on it, I get why they consoled me. As fellow parents of Autistic children, they know just how hard it can be… more so than other parents.

angry boyWhen a toy shatters against the wall or… in this case, a game remote breaks as it’s slammed onto the ground, you can start to feel a little bad as a parent. You start to picture movies where troubled families have troubled kids who break things, become bullies and eventually put on a mask and go around killing people. Yes, I watched the Halloween remakes recently. Anyway, I digress…

More extreme or not, harder or not, our children still love us and I still feel like I’ve just graduated into the next level of the group. I don’t need consoling but I do appreciate the support… so very much so. Because that’s what our community is all about and it’s truly wonderful to know it’s there.

When your child first tells you something hurtful, and they will, you don’t have to share it with pride and you certainly don’t have to share it because you feel hurt.. but share it anyway. It’s a very heart warming feeling when you get that little reminder that there are some truly great people out there that waiting for you in that new group you just joined.

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How did ‘cure’ and ‘acceptance’ get to be such bad words?

It’s no secret that the Autism community is quite divided on many topics and I’ve even written before about how easy it is to offend one side or another depending on what you say.

For the last 4 months, I had been trying to organize a rather large campaign to get as many people to write about “Understanding and Acceptance” for those that live with Autism every day.

It’s done well but has perhaps also added fuel to an already hot topic. One that has turned two very good, very positive words into opposing sides of a war.

Cure

This word is often used in finite terms, such as how antibiotics can kill a virus or infection and leave you without a trace of the offending agent of illness.

The issue here is that many people with Autism (especially Aspergers) and even those that love them, feel that autism is a part of what makes a person the person that they are. It affects every aspect of their life from birth to where they are today and to remove that would be like removing a part of who they are.

When a loved one (usually a parent) is presented with a child that is “low functioning”, they would love nothing more than to cure their child. Some children (even those that are of adult age) are unable to speak, use a toilet, live independently, they hurt themselves, wander off with no idea what they’re doing or where they’re going… they’re unable to express themselves, their feelings or desires.. they’re trapped.

What results is the people from group a (Aspergers/high functioning) often resenting those from group b (lower functioning loved ones) for wishing to “remove” a part of their children. They consider it quite offensive to think that Autism is an invasive illness that needs removing.

Acceptance

Acceptance is the cornerstone in giving women equal rights, abolishing slavery and in squashing racism… it is therefore considered necessary to give those that are different a chance to co-exist as equals among those that are “normal.”

Many people view Autism/Aspergers as a gift, an ability to think and visualize the world in a very different way from a person without it, however, it also comes with some complications in that their senses may over load them, they are unable to socialize as easily or effectively and may need some “allowances” from people such as added patience and understanding in both their professional and personal lives.

Should people learn to accept and understand these differences, not only could those with Autism/Aspergers excel but may be able to excel much further than anyone has before them in their field!

Well, the problem is that it’s all well and good for those that can work, those that can socialize even if only a little but for those parents/loved ones who witness their child being bullied, beaten, isolated and even institutionalized because they don’t even have a chance at acceptance since they are unable to truly interact with the world to begin with, acceptance is not only impossible but it’s a source of anger.

Those loved ones don’t need anyone to accept their child. They need for their child to learn to talk. They need for their child to learn to use the toilet. Acceptance, to them, is like expecting a bird to be able to fly before it even hatches from it’s egg… much less grows it’s feathers.

They can’t even think about acceptance because without a cure, there will never be acceptance… and if they had a cure, why would they need it?

Conclusion

bad words

bad words

The disconnect here happens because people view the world in black and white… there is their world, and then… well, that’s it. Their world. You can’t blame them if it’s someone they love, especially a child. You very quickly learn to not care about other people’s rainbow coloured happy places when you want your child to simply have a chance at a normal life and people attack you for it.

Likewise, you can understand how someone, anyone really, would get upset when others think that you should have a part of yourself removed because they don’t think you’re good enough the way you are. If you have any self worth, any self confidence, you are more than happy with who you are and don’t care what anyone else thinks.

The thing is, there’s a world beyond our own and we can’t push our world onto other people. What someone wants for themself isn’t necessarily a reflection of what they want for you… or how they view you for that matter.

One mother that wants the autism out of their grown, non verbal child doesn’t necessarily want the autism out of a 12 year child that has a higher IQ than Einstein.

Likewise, I’m sure most people with Autism/Aspergers that can fend for themselves would never want a parent to have to take care of their child forever.

These are not bad words and certainly not a cause for hatred. We just have to stop taking things so personally. We have to learn to accept that there can be a compromise.

A new way to think about old words

Perhaps a cure doesn’t have to mean “removing all” and instead can mean “removing the barriers”… implying that they’ll still have autism but maybe now they can talk, leave home, hold down a job and start a family of their own.

Perhaps acceptance doesn’t have to mean that the world just says “well, they’ll never talk.. accept it” and instead means that the world accepts that there needs to be a change in priorities, a change in how funding is not available, a change in how parents feel so alone with no where to go.

The world isn’t black and white. And the world isn’t just about you. We can co-exist… and understand that people want what they want and that they have their reasons for wanting it.

Don’t be so quick to judge, don’t be so quick to get defensive. A cure is not a cure for all and acceptance isn’t acceptance for all. Either support each other in their goals and desires or don’t. There’s no reason to hate.

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