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This is why no autism story or program will ever be perfect

By on October 26, 2015 in General
Julia is a new character on the children's show Photo: Sesame Street

Julia is a new character on the children’s show
Photo: Sesame Street

So the Sesame Street #SeeTheAmazing autism program was launched and shared and talked about like mad and of course, torn to shreds and judged and attacked.

Why? Well, I could go into the details but honestly, the details don’t really matter. This has happened with every program and story ever created and will continue to happen.

No one autism story takes every single perspective into account. They just can’t. Many of the perspectives conflict, making it very difficult to include together and there are just so many that it’s nearly impossible to remember to include them all.

Personally, I’m attacked every single time I talk about how great a person with autism can be, because I’m not talking about how disabling autism can be. Then I write about how disabling autism can be and I’m attacked because I’m not making autism sound like the best gift ever.

This happens every single time.

Cure vs acceptance
Parent vs autistic
Person first vs Identity first
Children vs adults
Independent vs dependent
Verbal vs non-verbal
Boys vs girls
Toxins vs genetics

It really doesn’t matter to whom you are talking or whom you’re talking about or what position you take or how much good you do. None of that matters.

You will be hated for it.

Sesame Street’s program isn’t perfect because I didn’t create it. Even if I did, it would only be perfect for me. Not for everyone else. Lots of people would hate it.

That’s the whole point.

This is why we don’t only have one company doing one program or one person telling one story.

Parents will reach other parents. Autistics will reach other autistics. Somewhere in the middle of it all, we’ll all reach each other. But not everyone will like it.

There’s 2 things we should work on in this regard:

1. Don’t attack each other. Constructive criticism is educational. Hateful attacks create closed minds. Show people how your story is different. I’m sure they’d even appreciate that. Just don’t attack them because their story doesn’t align with yours.

2. Don’t take the criticism personally. Some people are not going to like what you say because it’s not what they wanted you to say. So long as you have something to say, there will always be people who will want you to say what they want said. It’s personal for them, it’s not personal against you. They’re allowed to wish you said what they wanted to hear.

If you are doing good work and making a positive impact and changing lives, keep going. Let other people worry about their own programs and their own stories.

There’s more than enough room for everyone and there is more than enough stories.

That’s where real autism understanding and acceptance comes from.

Comments { 6 }

If I could could suggest just one New Years resolution, it would be this

By on January 2, 2015 in General

resolutionsI know this is a bit late but there are still some people out there that are unsure of what they should “resolve” to do for the new year.

Well, Autcraft, my Minecraft server for children with autism and their families has been receiving some media coverage in recent weeks and there was one question that I got from everyone that really stands out as very important and thus, would make for the perfect New Years resolution: “What is it about Autcraft that is helping these kids to make friends, to talk to other people, to learn to read/write faster and to make such great progress in such little time?”

The answer? Be less afraid.

On the server, we remove the risk of bullying but it’s more than that. The children there all have a lot of similarities and know what it feels like to be judged or bullied or hurt, so they don’t do that to each other. They welcome each other’s obsessions and ideas and if they do disagree, they do it in a way so as to not upset each other. This allows them all to feel unafraid to express themselves and even make mistakes.

I’d like to break this down into a New Years Resolution sort of way to look at it.

Be less afraid to be embarrassed

One of the biggest fears many of us have is the fear of embarrassment. We don’t want anyone to laugh at us or to think we’re stupid and so we either take the safest path or just do nothing at all in order to avoid that risk. However, when you watch some of the greatest comedians ever, their greatest asset is… embarrassment! They get as silly as they need to be in order to entertain us and to laugh… not to laugh at them, but to laugh because they want us to laugh.

So how do you be less afraid to be embarrassed? You own it. If you slip and fall or make a mistake, you laugh first and then you tell others about the crazy thing you did. When you own it, it’s your joke and it’s your tool to do with as you wish. How can anyone ever make fun of you when you own the tool they’re trying to use? That’s what the comedians did. They took something that they should have been afraid of and they took ownership of it. Once you do that, you’ll be less afraid to do it in the future.

Be less afraid to be yourself

This is the hard one because everyone likely wants you to do what they consider normal or what society expects of you. Now granted, if killing everyone is how you think you are, then this doesn’t apply to you. But thinking differently from the rest of the world is how great inventors change the world or how scientists make sense of the universe. If you stick to the previous point (less afraid to be embarrassed) than this should actually be an easy one for you. Being yourself, as wacky or silly or quiet or what ever you want to be might not be huge world changers but it will change your world. It will change for the absolute better.

When you be yourself and others are able to be themselves, that’s when you truly do find people that you have a lot in common with. That’s when you start making real friends because now you’re being open and honest with someone. Many friendships that I see are based on lies or huge compromises and even sometimes, I wouldn’t really call them friends. But if you are yourself and your friend is too and you like each other, there’s no greater friendship than that because you are both being honest with each other and yourselves.

Be less afraid to hurt yourself

I admit it, I really don’t want to hurt myself. Pain, it’s no fun. But when I think about the athletes at the Olympics or sports professionals, I know that they’ve done their fair share of hurting. In fact, when they say that they’ve been working at their sport every day of their life to get better, that’s not true. Because you can be absolutely certain that every single one of them has had some down time due to an injury.

They aren’t afraid to hurt themselves because they know that it’s one of those things that has to happen if they’re going to be the best some day. No one gets through life without some scratches and scrapes so you might as well stop trying to avoid it. Luckily though, our wondrous and amazing bodies are remarkably capable of healing. So unless you really do some damage, you’ll likely be back up and at it pretty quick.

Yes, no one wants to be hurt and that’s why we do everything in our power to ensure that doesn’t happen but it also should not be a reason to stop us. Take the safety precautions, think of everything that could go wrong and take measure to prevent them… and then do it. Yeah, you still might get hurt but then again, you still might end up being the best some day.

Be less afraid to hurt

No, this isn’t the same as the last point. Pain and hurting are often two different things. For example, many people, when they hurt themselves, they feel both pain and hurt… the pain from injury but also the hurt from the failure.

Hurt comes in many forms such as disappointment, depression, anger and then there are others such as when you lose a friend. But if we’re so afraid of these things that we avoid them then that means that we avoid doing things that could disappoint us or depress us or anger us… it means avoiding friendships. There’s a lot that we really should not be missing out on and certainly not because they might hurt.

Like all things, it’s going to happen but also, they’re going to require practice. No one knows how to be a great friend at first and no one knows how to do everything so perfect that they never get angry or disappoint themselves. You have to work at all these things and push through the hurt before you can conquer these things. And chances are, if you want them that bad, they’re worth it.

Also, the biggest difference between hurting yourself and feeling hurt is that one, anyone can do to you and the other you can only do to yourself.

Be less afraid to tell someone that you appreciate them

So often I am reminded that a job well done proceeds quietly, it’s only when everyone wants to contact you that you realize something is wrong.

What we really need more of in this world is for people to simply say, “you did a great job!” But this is something that many of us fear. For what ever reason, between these two emotions, it’s far easier to be angry with someone directly to their face than to be proud of them and tell them they did well. I suspect it has something to do with those awkward feelings from back in high school where, as teens, we were afraid to tell the other kid that we liked them. Something from that sticks with us and, as adults, we become afraid to tell someone we like what they did. Or maybe we just feel it’s unimportant because they’re doing their job.. what more do they need?

I don’t really know why it is but I see people actually shying away and saying no when others tell them that they should commend someone for a job well done. They are quite literally afraid to do it even though they would love for someone else to do that for them when ever they do a good job themselves.

All the other points are for you but for this one, do it for others. Be less afraid to give someone a pat on the back if they deserve it. It could really change that person’s who day… maybe even life. That’s pretty cool, right?

Be less afraid to take risks

Yes, this last one is rather cliche by now. We’ve all heard it. But the truth is that life really is short, only we don’t tend to realize that until later in life when we look back with regret. We think of all the times we didn’t do that we really wanted to do because we were afraid. It’s at this point we lower our eyes to the ground and realize that it was foolish to be so afraid. It was foolish to miss that opportunity for nothing because by the time we recognize all this… it’s too late.

We don’t have time machines and no one will truly be able to describe this feeling to you accurately while you’re young but there has to be some way to convince yourself that if you don’t take that risk now to do what you really want to do, one day it’ll be too late. You’ll have that regret to live with.

While that fear feels all too real right now, while right now, it paralyzes you and controls you… one day a much older you will think that it was nothing. You froze, for nothing. And you missed your chance, for nothing. And you’ll never get it back.

Don’t let fear rob you of moments. Those moments add up to your life. If you miss too many of them…

Like the children on that Minecraft server, be less afraid and you too will be amazed at the progress that comes from it.

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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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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.

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Adults are bullied too. Don’t let it happen to you.

By on February 11, 2014 in General

Every day I see people, grown up people, being bullied online. Only they don’t know that they’re being bullied.

What’s worse is, I see people, grown up people, being bullies online.  Only, they don’t know that they’re being bullies.

Chances are, if you’re in the autism community, you’ve been bullied. Yes, people get bullied online every day no matter what community they’re in. But when it’s parenting, especially special needs parenting, either you’re very new to the experience or you’ve experienced bullying.

Parents, instead of receiving suggestions, advice, education… they’re demonized, accused of being potential murderers, abusive, future stealing wrong doers. Every decision, choice and even every little word they say is put under a microscope and ripped apart. A parent receives an autism diagnosis for their child, visits an autism Facebook fan page and asks a simple question. The next thing they know they are in tears, hating themselves and feeling worthless. Sounds extreme? I’ve seen it happen. And it is not ok.

Autistics, instead of being heard are told that their opinion doesn’t matter because they’re “not high functioning” or “not low functioning” enough. They’re told that they need to be cured or worse, that they never should have been born at all. When the media rolls out in search of someone to talk to about autism each Autism Awareness Day, who is it that they search for? Parents. And if they do look for autistics, they seek out the children that are behaving the worst… the ones that will make headlines and drum up sympathy.

It is even worse if you’re an autistic parent. Believe me, it makes absolutely no sense because to me, it seems to me that the smart thing would be to get the perspective of someone that has been an autistic child, is now an autistic adult and also the parent of an autistic child. Who could have more insight into all angles than that? But sadly, no. Instead of seeking autistic adults out for guidance, they are bullied by all comers. Other self advocates, other parents, the media… all of your choices are wrong, all of your opinions are invalid.

Now, don’t get me wrong. Not everyone in the world is a bully. Not every experience is going to go that way. However, as I said, unless you’re very new to the community, you’ve experienced it in some form or another.

What I’m saying is, you need to not be the victim. You need to not let yourself be bullied. You need to stand up. Whether it’s to stand up and not take it, to stand up and walk away or stand up and just declare that you won’t take it anymore, you need to stand up against bullies. Prove to your children, all children, your fellow adults and everyone that bullying doesn’t belong in the autism community or even on the internet anymore than it does in our children’s schools.

In many ways, this is worse than what children get in school. I’d rather take a punch in the face than a bunch of other parents or self advocates telling me that I’m a terrible parent.

But just like the punch in the face from my school days, I don’t have to take it. Neither do you.

Acceptance can not be achieved by bullying others. Lack of acceptance does not bring about more acceptance. Anyone that professes to want acceptance for all but bullies you into it is lying, or strongly misguided. Not one single person on this entire planet that truly wants to be accepted or for others to be accepted would ever, in a million years, attempt to make you feel like you’re worthless. They would never ever want you to feel like they feel… bullied.

Why do some people hate me? Why do some people attempt to bully me? It’s because I refuse to believe that their brand of bullying is acceptable and furthermore, I refuse to join in. I will not be a part of it. Even if I do not agree with someone else’s opinions, methods or decisions… I will not bully them for it.

Don’t ever let yourself be bullied but more so, please, please please… do not ever find yourself being the bully either.

We are in this together. The bullying stops now.

It’s my hope that you share this with everyone, far and wide… if not this blog post then certainly the message; do not let yourself be bullied. You do not have to feel that way.

Please watch and consider this:

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