Tag Archives | emotions

Why I write about autism

If you read my blog already, you may have noticed that I haven’t posted in a little while now. The blog is 2.5 years old now and I think I’ve hit a stage in this blog’s life where I start to question what it is that I’m doing with it, where I want it to go and most importantly, what exactly it is that I’m trying to say with it.

It’s caused me to ask myself one simple question: why do I write about autism?

In the beginning

When I started my blog, it was mostly just to write about my son and the experiences we had together. I made observations about certain things he’d do and I’d give examples of how my wife and I became aware that he had autism.

I didn’t write to make a statement or to impact other’s decisions or opinions. I didn’t write to inform anyone of anything either. I didn’t write because I felt I had to or because I felt anyone wanted me to.

It was a quiet but very satisfying time for my blog where I felt good about what I was doing. I still do, of course. But it was a different kind of good feeling. It was peaceful and gratifying.

As my blog grew, that all changed.

Over time

As the blog grew, like most bloggers, I found myself weighing in on community topics, giving my opinion on researchers that seem to only be trying to blame mothers for their child’s autism, on the crazy things that Jenny McCarthy was up to, the vaccine debate and so on.

I tried to balance a lot of that with emotional posts, praising people for being people. Whether they’re parents doing their best or autistics for doing their best, I tried my best to keep myself and my readers looking towards the positives.

But somewhere along the way, again, like most bloggers, I found myself being yelled at or dragged down by bickering and arguing, general negativity or any number of other methods.

Some people feel they’re forever the victim and no matter what I say to them, it’s an attempt at hurting them more. Some people feel that the universe is a very dark place and that I offend them by simply having a smile. Some people feel that their experiences outweigh my experiences and thus, I should not have my experiences at all.

These things sound absurd, but they really happen.

The law of averages says that, in the case of blogging, no matter how much you try to avoid negativity, the more readers you reach, the more likely you are to encounter it.

Eventually it becomes inevitable and should you be able to cope and continue to grow, you’ll encounter that negativity more and more, over and over. Should you reach a sizable enough audience, it becomes a daily occurrence.

And that can weigh heavily on your shoulders. No matter how strong you were in the beginning, it gets hard.

why write about autismWhy carry on?

So the question becomes, if you’ve gotten yourself to the point of the daily negativity, why carry on? Well, the law of averages may state that you’re going to be stuck with it but it also says that you’ll have thousands of positives for every negative. And having thousands of positives daily really is worth one negative, right?

For example, I often hear from people how my posts have helped them when they needed it most, or that my posts are what they look forward to reading every day, or that appreciate the time and energy I put into doing what they wish they could do themselves… I love to hear from people who say these things, not because they praise me, but because it means that I am making a difference. I am outweighing the negative with the positive. What I write matters.

Still though, why? Why do I write? It’s not for the praise. It’s not to know that what I say matters. It’s not really even to make a difference. It is nice to hear these things. And believe me when I say that I honestly and completely appreciate every single one of my readers. I always make every effort to reply to every email and tweet and message.

But I’ve come to realize that I don’t write for my readers. I don’t write for the media. I don’t write for the masses. I don’t even write for my son.

I write for me.

That sounds self centered. I realize that. But it’s true.

Well no. It used to be true.

And that’s the problem.

Figuring it out

I’ve been frustrated for quite some time but only in the last month or so have I really just put the whole thing on hold and really given it serious thought.

Had I run out of things to say? Was I no longer able to cope with the negativity?

In my frustration, others reached out to me and told me to write for the good of all autistics. Others told me to write for my son and even more so, for his future. Others told me that, again, my writings helped them and that it helps others and thus, I should continue doing so.

These are all beautiful reasons to get back to my keyboard and push forward, but I didn’t. These reasons should have been good enough. They should have been all the motivation I needed. But they weren’t.

So I went back to page 1 and started reading. And it occured to me that all those reasons, while great reasons, were not the reason.

I needed to know why the frustration started. I needed to know where I went off course. I needed to know what it was that I was missing.

And I found it, back in my old blog entries.

I need to write for me.

No one else.

Going forward

I can’t say it enough, that I value and appreciate my readers and hope I never stop hearing the positives. I could do with less negatives but that’s another story.

But as much as I love every single reader I have, I have to admit to myself and acknowledge to you right now that I didn’t write for my readers in the beginning and I won’t do it anymore.

Somewhere along the way I did though. As responses came in and I started hearing from my readers, my reasons for writing slowly changed and I didn’t even realize it.  I started writing just to help people, to get more of those responses and to make a bigger difference.

I don’t know why or how, but I believe, that’s when I lost my spark.

That’s when I started to get frustrated.

I hadn’t run out of things to say and it wasn’t that the negativity became too much for me… it just didn’t feel right anymore.

And that is what’s most important, I think.

You can write for your autistic child or to help others dealing with autism or to educate others about autism or to make a statement about autism or to make a change in the world for autism; these are great reasons to write. And if these are your reasons for writing, that’s wonderful. But it’s not my reason.

I’ve realized that those are things that I hope my writings will do. But it’s not why I write.

If I write for me, as me, and stay true to me, those things will happen on their own. At least, I hope they will. They did before.

To stay true and honest, I need to write because I want to write. Writing for any other reason compromises that.

I hope you understand. Thank you for reading.

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Musician makes connection with 8 year old, blind, autistic boy named Jacob

As with any nice day when Tyler Gregory has no “gig” to perform at, he went to his favorite spot on the street to perform for the crowds that were coming and going that day.

However, what was quite rare was a most unlikely connection that he was able to make with a young man named Jacob. Eight years old, blind and autistic, this child was deeply attracted to Tyler’s music and began dancing… and inching his way ever closer and closer to the source of the music.

At one point, you could see Tyler nod to Jacob’s mom to indicate that it was alright… and then… their connection became much more than just dance. Jacob, first touching the guitar, and then Tyler’s leg… almost bringing Tyler to tears as he continued playing on.

Before you watch the video below, here is a small part of what Tyler wrote on his blog (you can read it all yourself here):

unlike most kids that come up to me with curiosity, I felt so much energy coming off of him and I was completely overwhelmed. His hand on my leg was very powerful and about brought me to tears while playing. Not because he is blind or autistic.. but because of a connection I have never felt and one that is impossible to explain. Honestly, a feeling that came from my toes all the way up my body and surrounded me. I can’t begin to explain it. I want to try to put it into words, but there is no way to tell how powerful his energy felt.

It was a powerful moment that made my day and reminded me of the good things in life. Reminded me why I love different interactions with people when playing music. Reminded me of how powerful music can be between two people. It also reminded me not to take things for granted, for most of us have it pretty easy in our everyday life. So, I just simply went home with a very big smile on my face that day, and a story to tell my close ones.

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Sleeping with autism

By the title, you’d probably be expecting a post on how some children with autism struggle to sleep through the night or what techniques people use to get more consistent sleeping patterns… actually, this post isn’t about that.

Actually, what I do want to write about is something a bit unexpected, not a huge surprise but certainly wonderful. See, if you were to check in on my boys right now (at night), you’d see that they’re both crammed into one single little bed, asleep together.

Don’t want to sleep alone

My boys have always slept in the dark, in the quiet and on their own. We’ve never used night lights or anything and so they’ve never had any issues with needs or fears. They just go to bed at bed time and that’s that.

However, recently, my little one (Tyler, 4) has been asking that he have someone sleep with him. Usually me but sometimes my wife. It’s not because he’s scared… he just wants us with him.

Now, these are small beds… I don’t fit in one when I’m by myself, much less with a child beside me.

So there has been a couple of times that I’ve laid with him, usually I can’t because I have other things to do and then some other times I just won’t because I don’t want him becoming dependent on that sort of thing happening every night.

Autism and Empathy

Cameron and Tyler

Cameron and Tyler

This is where his big brother, Cameron (6 with autism) comes in.

The other night, I went to check on them and they were both crammed into Tyler’s bed. It wasn’t pretty. Neither one of them stays still for long in their sleep.

The next day, I asked him why he was in Tyler’s bed and he said “I just wanted to make Tyler happy.”

Now, there are strange rumours and beliefs by some people that people with autism, especially children, lack empathy. Meaning that they can’t understand how others feels, don’t identify with them and most absurdly… don’t care. This is obviously not true. I mean, not always… there certainly can be times that they won’t understand or even care, just like anyone, but when you add it all up, it’s not true that autistics are completely incapable of it.

This was certainly a great testament to that… Cameron, wanting to make his little brother happy, got out of bed and climbed in with Tyler so that he could have someone to sleep with.

They don’t do it often, thankfully, but when Tyler is really upset about it, Cameron goes on over and hops into Tyler’s bed. How can I get upset about that?

It’s awesome!

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Misrepresentation within the Autism Community

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.


John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

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Guilt, grieving and other emotions when your child has Autism

There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.

“Should be”….  such a funny concept in a world of differences.

In my experience

emotionsI can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.

I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.

I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.

It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.

As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.

For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).

No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).

“Should Be” does not mean right or wrong

What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.

There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.

It’s not right or wrong, it’s just different.

Fear of the unknown

For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.

Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.

Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.

If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them.  They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?

Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.

We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.

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