Tag Archives | Autism

RIP Autism Blogs

By on December 29, 2016 in Autism

I think 2016 is most notable for how many celebrities passed away. Not just celebrities but like, legendary celebrities that revolutionized what ever it was they did. There’s also the whole election thing, but what ever… moving on.

In the autism community, something else died. It faded away. Only, most people never really noticed. Autism blogs.

I was looking through the list of autism blogs that I have along the side bar of this very blog and noticed that not one of them has a post in 2016. Some stopped updating as far back as 2014. Most in 2015. In 2016… no signs of life. All vital signs… flat lined.

I’m not really one to talk, I’ll admit it. My last post was in April, this is very near the end of December now. So what’s the deal? Well, for me, I got busy. I started Autcraft and it literally exploded in popularity, not just within the autism community but also in the media and even with researchers.

What happened to autism blogs in general? Why did they fade away? Why have parents stopped writing?

Social Media

In the beginning social media drove traffic to our blogs. It was great. You start a fan page or a twitter account, post links there to your blog posts and people start flooding in. It was the easiest thing in the world. But social media evolved and the people did too. People didn’t want to go to social media just to go somewhere else. People wanted to read what you had to say right there, where they are, without having to go anywhere else. That’s basically what social media sites are designed to do… keep you there, not send you elsewhere. And it worked.

Autism bloggers found that they had unlimited space to write what they wanted right on Facebook, or Google+ or Medium… not so much Twitter. People commented there. They shared there. They liked there. And the more they did, the more other people saw it. None of that happened when the person went to a blog to interact with you.

So the writing moved. With it, so did the writing style because you couldn’t just post links within the posts anymore. You couldn’t just embed images or style things the way you wanted anymore. So “articles” became “posts” and “posts” became “status updates.”

People don’t have time to read a whole article anymore anyway so the shorter it was, the better. Which brings me to…

Time

As much as autism parents don’t have time to read long articles anymore, they also don’t have time to write them. It gets even worse when you write them and then go to other people’s blogs to read them too. Your whole day ends up being consumed with blogs when, as we autism parents know, there’s very little “free time” as it is.

So those autism bloggers who loaded up social media sites to see what friends and others are doing, they would just update their life there. Where those people are. There was no point in going to some other website, signing in, writing a post, proof reading, spell checking, styling, finding images and styling it all just to go back to their social media sites to share the link with people who don’t want to have to go there just to read it. You’re better off just skipping the fancy stuff and putting it right on your social media page. Less time for you and the reader that way.

Money

Social media is free. Well, sudo free. You get ads and stuff which pays for it but you personally do not have to pay anything for it. A blog on the other hand, you do. If you want a custom domain name, if you want a custom look and feel, if you want to do give-aways… chances are you have to pay for all that. There are ways around some of those things but it takes work… which also equates to value. Money.

On Facebook though, you don’t have any of that. You just type what you want to say, hit the button and you’re done. Hassle free. No domain, no files, no plugins, no themes… if time is money, then just putting your thoughts into a Facebook post instead of a blog is priceless.

The Future

I am a little sad that autism blogs don’t seem to be a thing any more. For some reason, it was just easier to find other autism parents that I could relate to when I would go from blog to blog with their shared links and read about their experiences and feel like I knew them a little bit. That’s tougher to do in social media when your only real interaction with someone is a shared comment on someone else’s thoughts on the latest television show. Also there’s the whole friend request or “follow” thing. I think most people feel a lot less awkward about just having readers than they do in having people be on a friend list.

Many autism parents do still try to help each other out though by sharing each other’s Facebook fan page updates or giving shout outs and things but it’s just not the same. Perhaps I’m just nostalgic.

The autism blog era may be mostly behind us but it’s not completely. There are still some autism blogs out there and some new ones starting up all the time. Plus, there are still people doing actual writing on the subject and about their families, they’re just harder to find now but they are out there.

Also, those people who do friend some other people they find on social media turn out to be very good friends, even meeting each other in real life after a while. That doesn’t normally happen with readers on a blog. So there’s that.

I guess what I’m trying to say is… RIP Autism Blogs. You will be missed.

But there’s still lots of good stuff for us in 2017. We just have to adapt and make the best of what we have.

Comments { 16 }

You are not alone

By on September 4, 2015 in Autism

you are not aloneI’ve been debating with myself for some time whether or not I should write this. I’ll get to the reasons for that in a bit but first, for right now, I need to tell you this: you are not alone.

I am a 39 year old with Autism Spectrum Disorder (formerly Aspergers) and I have two children, one with autism and one without. I have a good job, I take a nice walk every day and I help a lot of people around the world but you know what? Sometimes I still feel completely worthless. Sometimes I still feel totally alone.

The truth is that we all feel this way sometimes. For those of us with autism or really, any other special needs, this feeling comes far more often. Sometimes we feel like this way more often than we feel good. I know I used to. I wasn’t always a grown up with a family and a job. I was a child with autism too and I felt so very alone then. I felt like I wasn’t nor would I ever be valuable to anyone. I felt like the world wouldn’t even notice if I was gone.

I still feel like that sometimes. I felt like that just the other day. As I sat there I thought… I’m just going to tell the world I’m done. I tried, I did my best but I failed. I gave it my best shot but I still feel worthless. And as I sat there, staring at my television that was off, I thought to myself, “I don’t even have anyone to talk to about this.”

Like every other day when that happens, I wanted to tell the world I was giving up. I was done. But like every other day, I thought to myself, no, I can’t do that. So I went to bed.

Here’s the thing, I have talked to hundreds, if not thousands of children with autism who have felt this exact same way. They’ve told me the exact same things. For the hours and hours I’d talk with each and every one of them, the most reassuring thing for each and every one of them, the one common denominator between them all… was me. I was the one that helped them to see that they weren’t alone. Perhaps I couldn’t convince them that they weren’t worthless, just as no one can convince me when I feel that way, but I could show them that they weren’t alone. All I had to do was be there.

Here I am, right now, to tell you that you are not alone. I started this big thing where I have this opportunity to help all these kids and the world praises me for it, often far too much. I’ve been in the news and on television and the radio and I am given this wonderful opportunity to help kids see that they’re not alone.

So why do I continue to have these days where I feel totally worthless?

Now I’m back to where I started, debating with myself over whether or not I should ever even write this, should I hit the publish button? Will I let down everyone that looks up to me? Will I disappoint all those kids who think that I’m some symbol of positivity for them? Will people look at me differently? Will people judge me as silly or foolish or even selfish for having done all this and still feeling so down?

But then I thought back to all those kids I’ve helped. They didn’t feel alone anymore because they came to me and we talked. But what about all those kids that don’t come to me? They’re still out there, feeling worthless and feeling alone. What if they’re sitting there, staring at their off television, feeling like there’s no one they can talk to? Debating on whether or not to tell the world “I’m done” just as I do on those days.

I’ve decided the message is more important than what anyone else might think. I’ve decided that… as much as this is about me, it’s not about me. I’ve decided that I have nothing to be ashamed of and I have nothing to hide. I should not be afraid to admit that it’s hard sometimes. Really really hard.

I can’t explain to anyone why I feel that way sometimes. I just do. I can’t answer people’s questions nor can I rationalize it when it happens. I feel stupid and guilty and selfish and worthless and alone all at the same time and it takes absolutely everything out of me when it happens.

I have autism, I have days where I feel worthless and alone and I am writing this to tell you that if you feel this way too, you are not alone. It doesn’t have to make sense. You don’t have to explain to anyone why you feel that way. No one should ever try to make you feel guilty for it.

I am a grown autistic man with wonderful kids, a good job and I can say, completely without ego or bravado, that I have changed the world for the better, at least for some people and still, to this day, I still sometimes feel completely worthless and alone.

You don’t owe anyone anything, not even an explanation for your feelings. It doesn’t have to make sense to them or even to you. You don’t have to feel guilty or ashamed about it.

Please believe me. You are not worthless and you are absolutely not alone. 

And if you don’t believe me now, come back and read this again tomorrow.

I’ll still be here.

We both will be.

Comments { 4 }

Countering snoring in children with Autism

By on November 21, 2014 in Autism, General, Parenting, Research, Special Needs

It is not uncommon for toddlers and kids to experience trouble in enjoying an uninterrupted night’s sleep. Discomfort with the darkness, snoring, fear of dreams, and even the habits of sleep walking are deemed pretty routine affairs with children. However, if a child has had a history of autism spectrum disorder (ASD), any instances of troubled sleeping should never be ignored. These problems could well be taken as a measure of the ravages of ASD caused in the body. More importantly, by being conscious of the need to identify such uncommon sleep habits in children is the first step towards alleviating them, as it is certainly possible to do so, with just a few easy to understand and implement behavior strategies. Here, we try to understand the links between autism and sleeping troubles such as snoring, and also try to tell you more about the simple remedies for such situations.

Immobilier

Why children suffering from Autism are more prone to develop the habit of snoring?

There’s enough medical literature and research documentation to establish that children suffering from ASD are not great sleepers. Among the most common sleeping problems they exhibit are insomnia and sleep apnoea, which is primarily linked to snoring. Here are some of the causes that lead to these observations –

  • Children with ASD also suffer from problems such as throat infections, ear infections, and coughing. This leads them into sleeping with their mouths open, a natural reaction when clogged body airways necessitate more inhalation of air. This majorly leads to snoring in children diagnosed with autism.
  • Lack of communicative powers rendering children unable to tell their parents as to what they want to be able to sleep better, and unnatural emotional attachment to sleeping patterns which can get easily violated, are two lesser known yet correlated causes leading to disturbed sleep patterns, sleep apnea in general, and snoring in particular.
  • Anxiety is a serious deterrent for sleep in children being afflicted with ASD, which slowly but surely leads children into the habit of waking up a few minutes after falling asleep. This is known to worsen snoring in children.

Autism 2

Snoring solutions to bless children with uninterrupted sleep

A child losing their sleep is certainly not a great sign, and needs to be set right at the earliest, as lack of proper sleep can lead to several health complications in the child. Here are some effective snoring solutions and tips that can help children sleep better.

  • Among the simplest anti-snoring aids is an elevated neck position for the child. Such a position prevents the tongue from falling back in the mouth, and hence prevents snoring.
  • Give a warm bath to the child before putting it off to sleep, so that the airways in the nostrils and throat get cleared up and snoring can be avoided.
  • Consider using anti-snoring devices such as masks and mouthguards, as there are several manufacturers that make child-safe anti-snoring devices.
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10 things I’ve learned from running a Minecraft server for children with autism

By on June 16, 2014 in Autism

It wasn’t that long ago that I registered a domain name, opened up a shiny new Facebook page and Twitter account and announced to the world that I had started a Minecraft server just for children with autism and their families. Now, one year later, I can honestly say that I’ve changed a lot. I’ve changed because I’ve learned a lot. Some of it good, some of it not so much.

This is what I’ve learned in 1 year of running a Minecraft server for children with autism.

Bullying1. Bullying is far worse than anyone realizes

In one year, Autcraft‘s list of approved players (whitelist) is now over 4300. From a very humble Facebook post to a few hundred people, word spread like wildfire. This happened because parents had finally found a place for their children to play where they wouldn’t be bullied.

It’s not just the quantity but also the quality. Most kids are used to the hitting, kicking and teasing. On Minecraft servers, the bullying usually involves killing them, destroying their stuff and stealing everything they have to the point of making the game unplayable.

The worst though, is that these kids, some as young as 5 or 6, are told that they should be killed or never have been born because they are dragging down the human race. They’re told they’re less than worthless, they’re a burden on everyone, even their own parents. They’re told that, if they care about people, if they care about their parents, they should commit suicide.

Next time someone talks to you about having autism and being bullied, don’t respond with “well, everyone is bullied” because there is no comparison.

2. Being autistic makes you a target

Three weeks after opening our doors, Autcraft became the topic of several troll/hacker forums including the infamous 4chan website. A victim of our own success, these places heard of us quickly and immediately determined we’d be an “easy target” to “make a bunch of autistic kids cry.”

Since then, we receive applications from troll/hacker groups at least 2-3 times a month and our server is DDOS attacked at least once a week.

3. Autistic is to ‘retard’ as Autcraft is to…

People are using ‘autistic’ in the place of ‘retard’ in their lame attempts at insulting others but I didn’t realize just how much until I started finding Autcraft being used as the insult across the Minecraft community. For example, when two people are insulting each other, one would suggest that the other belongs on, or should go back to, Autcraft.

If we aren’t targeted for attack, we’re used as an attack on others.

calm down4. Autistic children are mastering a technique that most people lack

I have seen many autistic children on our server get so mad that others can’t help but change ‘rage’ from a noun to a verb. “He’s raging.” When a child with autism gets to that point, there is very little self control. The worst of the worst behavior that they are capable of can and often does present itself.

However, many of these children, most even, have this remarkable ability to stop, recognize this is happening and remove themself from the situation and return after calming down.

I can only assume that this is due to the very hard and diligent work of their parents and care givers (and even some handy apps) but this is something I am witness to very often and always amazed by. While most people don’t ‘rage’ quite as extremely as some of these autistic children do, they still prolong the issue and hold grudges for far longer than they probably should.

A secondary benefit to this is that they are able to recognize this in other autistic children as well and often come to quick resolutions after apologizing and forgiving each other upon the child’s return from calming down.

5. The kindest community in all of Minecraft

Ok, that’s a bit of a bold statement to make and I can’t really confirm it since I haven’t been on every server but I can tell you that every guest we’ve had from YouTube celebrities, Minecraft news sites, other server owners, teachers and more have all told me that they received the biggest and kindest welcome when they joined Autcraft and continued to experience the friendliest atmosphere they’ve ever had while child after child offers to give them tours, help them find a place to build, help them build, give them advice and even just offering to be their friends.

This is surprising to most people as they assume a community comprised of socially awkward or special needs children couldn’t possibly be that well natured… that friendly. But it is. It really is.

Equality vs Equity6. Equality vs fairness

One of the most famous quotes in the autism community is “If you’ve met one autistic, you’ve met one autistic” which is another way of saying, each autistic is different with different characteristics, symptoms of autism, personalities, strengths and weaknesses.

On other Minecraft servers, rules are set in stone and everyone that visits that server must abide them. With Autcraft, while we do have a set list of rules, each child is essentially treated quite differently.

While this sometimes leads to some being upset that “it’s not fair” that two children are not treated equal, I have found that for 2 very different children to learn a new task, complete a task and have an equal experience, it is imperative that those two children not be treated equally in the beginning.

You treat them fairly, based on their strengths and weaknesses such that both children have an equal opportunity and that’s when everyone does well.

Positive Reinforcement7. Encouragement vs Discouragement

When children do bad things on a Minecraft server, the instinct is to jail or ban them. When they say bad things, they are muted.

On Autcraft, these things happen very rarely despite the fact that many of the players are children that have more communication impairments, less emotional control and more learned negative behaviours than even their own parents may realize.

The reason these punishments happen so rarely is quite simple: we encourage them to do better.

We reward players that show great improvement from Sunday to Sunday with Player of the Week. We take the players that show respect, maturity and a need to be a helpful contributor to the community and reward them with the added responsibility of being a Helper.

We offer many great rewards for players who simply do their best or make improvements over how they were previously.

Children want your attention. You can either wait for them to do something wrong to get it or give them opportunities to make you proud.

Communication is key8. Communication is key

When a player does act out, rather than mute or jail them, we ask them if they’re OK.

Nine times out of ten, we’re told about something happening in their life that is troubling them. We talk about it and they either feel better or don’t but the ‘acting out’ stops.

Communication is not limited to talking. For some we contact the parents with something their child did or said, sometimes it’s with concerns about how they’re feeling and sometimes it’s to tell them about the really great thing their child did.

Sometimes we have children on that are very young or unable to read/write the chat, in which case we set up a system with the parent such that if we move their child to a special room, that’s their cue to get mom or dad so that we can relay information to them, they tell their child and then they continue on playing.

Open communication, in what ever form we can achieve it, at all times, makes the whole experience better for everyone.

Be Yourself9. Progress is made when you’re free to be yourself

We’ve received so many emails from parents saying that their children are making better progress now than with years of therapy. Others are making friends for the first time ever. Some are learning to read and write when it seemed nearly impossible before.

I believe that the reason for this is simple: the children are unafraid to just be themselves.

When you remove the fear of bullying, embarrassment and the shackles of self-doubt, these children open up and do the things they love. They do it in the open and for all to see and others rejoice in it and encourage that. That’s when real progress is made.

They’re no longer afraid to spell something wrong, they’re no longer afraid to admit they like something they feel like maybe someone else would think they shouldn’t, they’re no longer afraid to speak up and say what is on their mind.

This is when real education happens. This is where real power comes from.  This is how real progress is made.

respect10. Respect

Many of these children are fighting battles that most people can’t imagine. For some it’s constant bullying while others have unaccepting parents. For some it’s not having any friends or the struggles that come with being unable to communicate effectively or it’s the blinding rage that seems to bubble up all too often despite their best efforts or maybe it’s other things like also having ADHD, Tourettes, seizures or any other number of other disorders or problems.

When I talk to many of these children, they are going through more battles than most adults would be capable of handling. We often joke that life was so much easier as a child than as an adult but for many of these kids, that simply is not true.

Talk to them with respect, make your best efforts to listen and to understand and never dismiss their struggles.

They will respect you when you respect them and that’s when you’ll have an opportunity to truly help each other.

Comments { 12 }

Dear news media, this is how you fail the autism community so badly

By on May 24, 2014 in General

The autism community’s biggest enemy, by far, is the news media. How so? Well, first of all they report the “terror” of autism, the “suffering” of autism. Secondly, they take any report that says “We put X and Y in a room together and found a Z% correlation” and create sensationally outrageous headlines such as “Z is caused by X!!!! Your children are doomed!!”

If you are not a part of the autism community, I can understand how this must appear to be an over exaggeration. If you are in the autism community, thank you for recognizing that it is, in fact, not an over exaggeration.

To give you two prime examples of how the news media agencies fail us, we only need look at what is happening this week.

“Significant” Link

“Study: ‘Significant’ statistical link between mass murder and autism, brain injury” – http://www.washingtonpost.com/news/morning-mix/wp/2014/05/21/study-finds-significant-portion-of-mass-murderers-and-serial-killers-had-neurological-disorders-including-autism/

This article names all sorts of serial killers that you either hate or will hate after reading about them, names like Adam Lanza, Seung Hui Cho, Jared Loughner and Jeffrey Dahmer. Having just come off the headline of “significant statistical link between mass murder and autism”… can’t you just feel that emotion taking over? 

Oh wait, we skipped this one minor paragraph tucked away in the middle somewhere that has little importance… it’s this one:

The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder. “We’re not saying people with autism will be serial killers,” Allely said, adding “it’s way too early to make any statement like that.”

Hey wait, that does seem important, doesn’t it?

To me, a more appropriate headline would have been “Anecdotal and speculative information researched on autism and mass murder finds it’s way too early to say people with autism will be serial killers”.

Well, maybe not, it’s a little long and granted, it doesn’t pull in the readership that “significant link!!!” will.

Now, in my own research, I discovered that the number of homicides in the US between 2000 – 2010 was 165,068. 

This week, one person with autism plans a murder and suddenly we’re having studies about there being a potential link? Where are the studies that say “hey, 165,000 murders were by people that had no disorder. Could be a significant link!”?

Bullying Autistics Leads to Murder

This second bit of news also bothers me on another level.

“Santa Barbara Shooting Suspect Calls Loneliness ‘Darkest Hell’” – http://abcnews.go.com/US/santa-barbara-shooting-suspect-calls-loneliness-darkest-hell/story?id=23855994

In this article, they write

“Schifman said Rodger was diagnosed as being a high-functioning patient with Asperger syndrome and had faced bullying through much of his life as he had trouble making friends.”

Now, I talk to autistic children every single day and at least 2-5 of them each week that feel like committing suicide due to the amount of bullying they are subjected to.

There are literally hundreds of autistic children dying each year due to bullying.

Why?!!? Why are there 100’s of children committing suicide due to bullying each year and no one cares?

But 1 child plans to commit murder due to bullying and suddenly this is national coverage? And autism is a big part of the story?

This is heartless and devastating to those of us with autism, those of us in the autism community and to your audience in general.

Stop Hurting Us

Stop Hurting Us

You Are Hurting Us

Listen, I understand that you need to get enough ratings, you need enough of an audience to “rate” against your competition. But please stop!!

I am begging you, I’m am pleading with you and I am insisting that you stop making autism out to the bad guy.

We are not mass murderers any more than non-autistics. We are not suffering any more than anyone else with depression or bullying. We are not this evil force that you paint us out to be.

We are children, adults, parents, friends, neighbors… we are your brothers and sisters.

You need to understand, you are hurting us. You are causing the suffering that you report about by reporting the way you do. You have become the bullies and you are bullying us.

Stop the sensationalist headlines. Stop burying important facts. Stop singling us out of a crowd of thousands and saying we all must be like that one in the crowd. Stop making us that thing to be feared.

Stop hurting us. Please just stop hurting us.

If you can’t find it in your hearts to start helping us, at least, please, stop hurting us.

Comments { 17 }