Archive | September, 2011

Recognition for the caregivers in the Autism community

By on September 27, 2011 in Autism

There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.

These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.

However, those not being discussed, and I think really should be, are the care givers.

Not part of a community?

caregiverOne day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.

You see, she is not autistic nor does she have any children with Autism.

What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.

As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.

She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.

To me, that’s not just a shame, that’s a tragedy.

What one has vs what one does not

You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).

They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.

I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.

Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.

A care giver has to want it, they have to love and they have to need it.

For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.

But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.

When it’s not you…

For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.

Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.

And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.

I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…

But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.

What’s in a voice?

I am very proud that woman spoke up and I am very happy she did too.

No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.

Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.

Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.

She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.

In conclusion

What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.

Even if we end up disagreeing on something, I’ll listen to you.

Chances are though, I’ll likely learn something and I’d hate to miss it.

Comments { 7 }

When apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

Comments { 33 }

Autism Study of the Month: Religious Belief Systems of Persons with High Functioning Autism

By on September 21, 2011 in Autism Study of the Month

atheist

Religious Belief Systems of Persons with High Functioning Autism

Source: http://csjarchive.cogsci.rpi.edu/proceedings/2011/papers/0782/paper0782.pdf

Abstract

The cognitive science of religion is a new field which explains religious belief as emerging from normal cognitive processes such as inferring others’ mental states, agency detection and imposing patterns on noise. This paper investigates the proposal that individual differences in belief will reflect cognitive processing styles, with high functioning autism being an extreme style that will predispose towards nonbelief (atheism and agnosticism). This view was supported by content analysis of discussion forums about religion on an autism website (covering 192 unique posters), and by a survey that included 61 persons with HFA. Persons with autistic spectrum disorder were much more likely than those in our neurotypical comparison group to identify as atheist or agnostic, and, if religious, were more likely to
construct their own religious belief system. Nonbelief was also higher in those who were attracted to systemizing activities, as measured by the Systemizing Quotient.

Translation

This study is pretty straight forward… the researches picked 192 individuals from an Autism website that discussed religion and also had 61 individuals with HFA (High Functioning Autism) fill out a survey.

The results showed that these people were more inclined to be atheist or agnostic in comparison to similar groups of NT (neurotypical) individuals.

The “Systemizing Quotient” is essentially a measure of how analytical a person is, or how likely they are to construct systems… rules, mathematics, abstracts and so forth.

My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

Personally, I’ve often wondered about this myself as the logical, analytical mind is often far more drawn to an area of science rather than faith… however, even in a study like this, even with over 250 people involved, it’s still highly questionable since the researchers are drawing conclusions from conversations about opinions.

Opinions are very difficult to measure to begin with, much less when it’s among random conversations that you’re not involved with… involving groups that you may not fully understand. There’s no mention of how much Autism expertise these researchers have.

There was a “coding principle” which is outlined in depth within the study but still, even “principles” have their faults via human interpretation.

Even if accurate, I’m not sure what purpose this study serves other than general curiosity.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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Autism blogging – pro tips from an amateur

By on September 21, 2011 in Autism

I thought I’d change things up a bit with this post, rather than writing about Autism itself, I’d answer a rhetorical question I get a lot. Yes, I know rhetorical questions aren’t really meant to be answered. But in this case, I think it makes for a good blog post.

What is so different about your blog?

blogThe honest truth is that I’m really not that great at writing, as some people continue to try to convince me. It’s just that I always try to keep some key things in mind as I write, which has come to serve me rather well.

Here are some basic rules that I try to follow:

Never assume the reader knows me or my children

I treat every single post as if it’s the first post that the reader has ever read of mine. I do have a lot of subscribers and other returning readers but I also have to keep in mind that every single day (hopefully), there will be new readers too. That means that this blog post right here is being read by someone that hasn’t read a single word from me before today. Maybe it’s you! Welcome.

I sometimes allude to a bit of my back story and will often put in links to previous blog posts that covers that back story more in depth. That way, if someone already knows it, they can skip it and if they don’t know, they can either go and read it for more info or they can just skip it, being satisfied with the small bit I shared.

It also means that not every single reader knows my boys… so I always make sure to add in a little about them each time I mention them. For example, Cameron (6yrs old, has Autism) and Tyler (3yrs old, without Autism).

This way, a very short and little burst of info and presto, people now have what they need to know as they continue reading from there… whether it just be the rest of this post or any new posts they may read of mine from here on out.

“Never” and “Always” are two words you should always remember to never say

It’s a funny sentence but in this case, an accurate one. In the world, especially the world of Autism, there is no “never” or “always.”

No thought, feeling, experience, belief or anything else is 100% consistent for all people that will read what you write. This is especially true when you hit hot button topics such as person first language or vaccines.

But it’s also true on even the most trivial and mundane of topics as well. You could write about something cute your child said or did and the moment you try to suggest that everyone would feel something, or no one would think a certain way…. you’ll find yourself being corrected.

It’s much easier to simply assume that absolutely nothing… and I mean nothing… is going to be a mold that everyone fits into. No treatments, no symptoms, no experiences, no thoughts… nothing.

Be careful to use “some” or even “most”… and when you do, add in “in my opinion” or “in my experience”… because, if you were to be honest, that is the truth. When you make assumptions for others, you do it based on what you know, in your life. So maybe, in your experience, most people would do or say something, but that doesn’t make it true of all people… right?

Also, keep in mind that people with Autism, especially children, are not all Aspergers or HFA (high functioning autism)… and likewise, don’t assume that all parents have children that are non verbal, unable to toilet train or other “more severe” effects. It’s easy to get caught up in our “own little world” but as we right, we have to ensure that other parents can either still relate to what we right or to understand what position it is that we’re writing from.

You’re not writing a book

This encompasses a bunch of tips… first of all, keep in mind that if you’re primary target audience consists of Autism parents, as mine does, chances are they don’t have a ton of time to devote to a blog post. In fact, yours is probably just one of several that they’ll be visiting today. So keep it to a reasonable length unless you’re writing something really really important.

You might not think you need chapters, since it’s not the size of a book, but that doesn’t mean that you shouldn’t section it out. Take this post as an example… I could have put all of these tips into bullet points and then plowed out a big wall of text to go over them, but sections just makes far more sense. A reader likely doesn’t have all the time in the world and will have to skim your posts quite a bit, so you might as well make the job easier for them.

Even if you don’t feel the need for sections, you should still keep in mind that as a blogger, you do have other tools at your disposal. Such as making important points bold and using italics sometimes as well never hurts. Most of all, if you do find yourself staring down a big wall of text, maybe you should try splitting up your paragraphs a bit more.

I like to split up thoughts into different paragraphs, even if they’re just sentences. If I read it out loud later and find that I take a breath and start a new train of thought, I break up the line so that visually, the reader will be able to do it naturally.

Other general blogging tips

Aside from the things I’ve mentioned, I also follow other general blogging tips that you will likely find on just about any blog about blogging… regular updates, lots of proof reading, writing about what I know… all that juicy goodness.

There’s 2 other things that I do that have been invaluable…

1. I tend to get ideas from other people, whether it be conversations, other blog posts, comments or just about anything… one idea I had was from an off topic remark on a home and garden show! When that happens, I quickly go to my blog and start a new post with the general idea of the post and save it to a draft. Having the WordPress mobile app on your phone or iPad is especially handy for this.

Chances are I don’t have time to write it just then and there… so a draft comes in really handy. This is especially handy when I find myself without ideas later… when my blog is needing a post, due to lack of updates, and my mind isn’t coming up with ideas, I can hit my drafts and find some good topics that I never got a chance to return too.

2. Sometimes as I write, I find that my blog post just isn’t turning out how I’d like or I’m simply not happy with how I’m wording things and know that it won’t be as well received as it should be.

When this happens, I hit the “Save Draft” button and call it a night. Not only have I found no harm in sleeping on it.. but most of the time, almost every time in fact, I find it hugely beneficial. When I return to it later and read it back to myself, it comes to me so much easier.

It may mean putting off a blog post a day, or maybe even a while if you just don’t get back to it for a bit… but that’s ok. It’s always there and it’s always usable.

For what it’s worth

Now, all of this I share knowing full well that it’s a take it or leave it post… I am not an expert, I have not been doing this for decades or anything. I don’t even have all that many readers, in comparison to many other blogs.

These are simply the methods that I use. They’ve served me well in the past.

If you have any more thoughts or tips that you use, please feel free to share in the comments. I’m always eager to learn and improve!

Comments { 0 }

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.

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