Tag Archives | educate

Dear 50 cent, I hate what you said, but thank you

By on July 5, 2012 in Autism

On Twitter, where these things always seem to happen, a follower lashed out at 50 Cent (kind of tongue in cheek-like), insisting that he release his album early. In an attempt to by funny, 50 Cent tweeted back something that put the entire autism community into battle stations.

And I say, thank you.

50 Cent

50 Cent

What he said

First, let me show you what he said. These tweets have been removed from his stream but he has yet, at the time of this writing, to apologize.

“yeah i just saw your picture fool you look autistic”

“i dont want no special ed kids on my time line follow some body else”

“just kidding about da special ed kids man, i was in special ed day said i had anger issues lol”

My reaction

At first, I was a bit upset but mostly disappointed. I am not exactly his biggest fan although I do like his songs that I hear on the radio. Nor am I well versed in his life but I have heard that he’s more intelligent than most would give him credit for and that he is quite the philanthropist.

Both of these things greatly contradict his remarks and would have me questioning if what I had heard was true.

Still though, I took to Twitter myself and Facebook and Google+ and shared what he had said. I tacked on “Not cool man. Not cool.” to show my disapproval but reserved any emotional response for later… after I had time to think about it.

Holly Robinson PeeteHolly R. Peete

Probably the best response and the one that is making it’s rounds around the Hollywood and news media scene is the open letter from Holly R. Peete, the celebrity mother of an autistic child.

You can read her response here. I suggest you do now if you haven’t already: Dear 50 Cent…

Her letter made a lot of people rejoice, repost and even cry. It prompted a wave of tweets from parents, all sharing their child’s pictures with a single unified message: “This is what autistic looks like.”

Her tweet, with the link to her response, has over 1000 retweets and that’s not counting all of the other people that have tweeted the link. My own tweet to it has dozens of retweets as well.

I can honestly say that I’ve never seen that before. It is amazing!

Wait, why thank you?

So why is it that I am saying thank you to a guy that said something so hurtful? Why am I saying thank you when so many people are so mad that they wish they could meet him face to face to yell at him in person for what he said?

Well, for two reasons really.

Number 1 is that he, and others like him who do these things, are able to unite the autism community, even if for just a moment. All parents, experts, educators, autistics and everyone else associated with the community all felt the same thing at the same time. And as improbable as it seems sometimes, the entire community actually is all saying the same thing… shame on you 50 Cent.

We’re all mad. We’re all waiting for an apology. We’re all disgusted for the same reason.

Oh, it’s ugly, but it’s unity. I’d rather it could come under different circumstances but there it is.

Number 2 is that it shows us just how much work we really have left to do. If raising awareness was step 1, then we’re only now tipping our toes into step 2… and there’s still 8 more steps to go.

The world has become so familiar with autism that it’s now a commonplace enough word to sling around carelessly, just as the r-word has been in the past. And that’s being beaten back, thanks to a lot of hard work from a lot of great people. But it’s hard work all the same.

If celebrity philanthropists can sling around “autistic” as an insult, in an attempt to be funny, then hard work is quite the understatement. But it does mean that people are aware. Now we have to inform.

And despite the lack of apology… I think the backlash and recent media attention (thanks to Holly R. Peete’s great response) is a great step forward towards informing people.

A lot of people are reading and watching and listening to that media. People who knew less about autism than 50 Cent apparently did. And they’re getting an ear full.

Just to be clear

I don’t condone what he said. I don’t like what he said. But it was said and I was mad, for a moment.

Still though, it’s an eye opener. A rude one but an eye opener. And despite the very negative beginning, I think this little episode is actually doing a lot of good.

With a united community and with great people like Holly R. Peete standing up to those who make statements like that, we’re well on our way to ensuring that these little episodes don’t happen again. Or at the very least, rarely.

And I welcome that. A lot of people just found out how very wrong it is to try to use “autistic” as an insult… whether they’re just trying to be funny or not.

That makes me smile. The entire autism community, for a moment, makes me smile.

I really hope he apologizes. That would really put a great little wrap up on this whole ordeal.

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This is the problem with awareness

By on April 3, 2012 in Autism

Actually, there’s several issues with awareness but for the sake of this being just a simple blog post, let’s stick with the main problem, as I see it:

Awareness breeds fear.

Childhood Awareness

So what happens when a child becomes aware that there are monsters in the world? Real or fictional doesn’t matter, they’re children.

When a child become aware that monsters exist in tales and bed time stories… they fear them. Can you blame them? They’re monsters. But not all monsters are created equal. It could simply be a “bad man” in the story.

They don’t know what the monsters look like, sound like, feel like…  they just know to be scared.

When a child becomes aware of thunder and lightning, quite often, they will fear it. They don’t know what is making that noise but they know to be scared… because they’re aware.

When a child becomes aware of an aunt that has a mustache… well, you get the idea.

The point is, it’s an instinct that usually doesn’t need to be taught or developed… people fear what they are aware of, but do not understand.

Adult Awareness

The proof speaks for itself through out history with differences in races, sexuality… even geography!

If you were to take all of the movies/stories based on aliens and work out the numbers, I would wager that the ones where aliens are evil and want to kill us all far out weigh the stories where the aliens are friendly and all is good in the universe.

Granted, the evil killing aliens makes for a better story and will earn more money but still, the point is, we fear alien invasion because we’re aware but do not understand.

Some adults learn inner peace and work on just being understanding and accepting before the fact… to practice acceptance before awareness. But the people that can do that are very very rare.

Disability Awareness

It’s funny how far understanding can go really. Do we live in fear of cancer or AIDS? Well, sort of but I wouldn’t say we look down on anyone that we meet that has them. Why is that? They’re deadly diseases. We’re certainly aware of them.

Thanks to some very prominent and effective information campaigns over the years, most people have a pretty basic understanding of them. Cancer is not contagious, it happens or it doesn’t. You get regular checks and do checks yourself and if you catch it early enough, and depending on the type, you could be fine.

AIDS, sexual contagion, use protection… yatta yatta yatta. I won’t bore you. You know this stuff.

Now, take stuff that isn’t a disease. That isn’t deadly. That is… mostly unknown.

This is the stuff that shouldn’t scare anyone. But it does. And why? Because it’s not understood.

Whether it’s Down Syndrome, Autism, ADHD… why would these things cause others to fear the person that has them?

Well, it’s because people are aware of Autism, but they don’t have a clue what it is, what it does or how to recognize it. It’s just… out there. They know it’s out there. Thanks to awareness campaigns.

See the difference? Deadly diseases get information campaigns on the signs, who to talk to, how it affects people… neurological disorders get awareness campaigns. They just tell you it’s out there… the end.

Awareness -> Understanding -> Acceptance

curiosity
I like to think of awareness as the first step. You can’t understand something if you are not even aware of it.

Now that most people are aware of it’s existence, the next step, which is where most of us struggle, is the understanding.

I think it’s time that people moved beyond awareness and stopped being afraid.

The thing is, a lot of people want for society to move straight on to acceptance of those with down syndrome, autism or any other disability and in a perfect world, this would be the ideal.

However, there is a natural path to these things.

First comes awareness, then there is understanding and finally, acceptance.

People are funny creatures like that.

People will fear what they do not understand (but are aware of) and they only accept a situation once they understand it.

That leaves us with the problem… how do we help society to understand?

Because I can assure you that until we figure that out, all this awareness will only result in fear and will only make moving on to acceptance that much more difficult.

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Low Functioning Autism vs High Functioning Autism in 2012

By on January 10, 2012 in Autism

There is a great deal of confusion surrounding the terminology simply because of how vague it really is… what exactly is “low functioning” or “high functioning”? Is it to be measured the same as the wattage of a light bulb or the complex calculable abilities of a computer?

For many people, as it pertains to Autism, it can simply be the difference between speaking and not speaking.. for others it can be a difference in perceived IQ levels.

Personally, I’ve always thought of the terms as indicators as to the level of one’s ability to be independent. Can they shelter, feed and provide for themself? Can they maintain a job? Can they “function” in the world on their own?

Whether or not that means using a device to speak for them, high or low IQ levels… what ever. It doesn’t matter… so long as they can live independently, they are “high functioning”. If they can not, they are “low functioning”. I don’t maintain that this is the correct way to think of these terms but simply that it’s how I think of them when I hear them or use them myself.

The reality is though that whether or not you agree with this form of terminology or not, you’re going to have to get used it. As of 2012, the discussion is no longer what it means or how to use it but whether you are using it pre DSM-5 or post DSM-5.

dsm-5Pre DSM-5

Up until the DSM-5, the Autism Spectrum Disorder has always been a list of common disorders such as Autistic Disorder, PDD-NOS and Aspergers Syndrome, which was added in the DSM-IV (IV is the roman numeral for 4).

That means that there really is no low or high level… there’s simply a different disorder to fall into. If you could live independently but struggled socially, you had Aspergers. If you had more severe impairments which left you dependent on others for life, you had classic Autistic Disorder. Others that fell somewhere in the middle would often be PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified)

That’s a very general description, it’s far more complicated than that but does give you a good idea.

This is where “low functioning” and “high functioning” terms often become a point of contention among experts, autistics, parents and everyone else.

As we progress further and further, we have become increasingly aware that many people that are unable to speak are actually able to communicate quite well once given the means too.. such as an iPad or “voice box” which can modulate text into speech.

We’ve also come to discover that just because an autistic may score low on a conventional IQ test, they may actually still be very smart. In fact, they could be brilliant. It’s just that the IQ test as well as the communication before, during and after was not done in a manner that was understood by the individual.

So labeling a person as “low functioning” because they could not speak or scored low on an IQ test was very much an inaccurate and inappropriate use of the term.

Post DSM-5

The DSM-5 will be wiping out many of the individual disorders within the spectrum and replacing them with levels… 3 levels. These 3 levels will essentially make up exactly what we will come to know as “low functioning” and “high functioning” and then.. one level somewhere in the middle.

They break down like this:

  1. ‘Requiring support’
  2. ‘Requiring substantial support’
  3. ‘Requiring very substantial support’

If you don’t believe me, you can look it up here: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

While this will once again open the terminology into very vague misinterpretations, especially for those that have never even heard of, much less read, the DSM… it will also attempt to very much define exactly what “low” and “high” functioning is supposed to mean.

Which means that most people won’t know what these levels mean but if someone does use the terminology incorrectly, you’ll now have something to point them to.

Conclusion

I understand the frustration when you read or hear someone using terms like this incorrectly.. or at all really. But at this point, we’ll all have to get used to it.

It’s coming, one way or another. The only difference being that it’s a little more defined. And now there will be three instead of just two.

So the next time you see someone using these terms, check for their accuracy against the actual DSM-5 records… if you can’t stop people from using them, you might as well try to get them to use them correctly.

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Explaining Autism

By on January 6, 2012 in Autism, Autism Awareness, General

I realised something today about autism. I realised that despite spending the best part of a year immersing myself in all things autism, reading every book, blog and website about the subject possible,and despite living with a four-year old autistic boy, I still really struggle to answer the simple question, ‘what is autism?’

I’ve mostly been asked this question by relatives, but variations of it crop up from all sorts of places. I’ve even been asked at work, and I work in a school. I usually begin by telling them it is a disability and a condition that affects the brain. After that, I start to struggle.

It’s not that I don’t understand autism. Since my son’s diagnosis last March I’ve come a long way in learning about it both first hand and through educating myself. My son is four year’s old and in his first year at (mainstream) school. Our story is probably very typical: at around two and a half we grew concerned about speech, communication and general behaviour. The usual struggle for diagnosis, support, and educational provision followed.  In the process I came to learn about educational statements, speech and language therapy, disability living allowance, Specialist early year’s services, Sunderland tests, social stories and countless other things. I’ve read the books and I’ve been there at every step of my autistic child’s development. It’s all well documented in my blog which you can read here.

So my difficultly in explaining autism does not stem from a lack of understanding, ignorance or, I hope, problems in expressing myself. The truth of the matter is this: how can you possibly explain autism to a person in a way that will help them understand? That will truly help them to understand the condition. How can you possibly find the right words that will help them realise what autism is like for your child and for your family?

Asking or expecting someone to understand, to really understand, is unrealistic. That’s why it is so difficult to explain what autism is. I could tell them about the triad of impairments, about the lack of theory of mind and the sensory processing difficulties. I could reel off a whole load of information about the condition. But I doubt it would really tell them anything about my son. A wiser person than me wrote, “If you know one child with autism, you know one child with autism.” The condition is so varied, affects people in such different ways, that finding an adequate, all-encompassing explanation is, I think, impossible. How could a simple explanation ever help someone understand the roller coaster ride that is life with autism (both for the child and their family)? The only way to really understand autism, and the effects it has, is by living with autism.

It is the families who live with autism themselves who know what life is really like. I am lucky in that I have a great deal of support from my family and those around me. But they don’t understand. Sympathy is not the same as empathy. For us, the best support has come from reaching out to those in a similar situation, whether it be through support groups, social networking, or blogs. That is why blogs such as this one by Stuart Duncan are so important, and it’s why I blog too.

I’d like to thank Stuart and the other contributors to this blog. By writing about the condition from the ‘inside’, you are reaching out to those in a similar situation. I expect that many people out there have no one who they can really explain autism to. This blog helps them realise they are not alone.

B’s Dad

Life With an Autistic Son

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The common, not so common, issues

By on October 18, 2011 in Autism

One of the problems I often encounter when discussion Autism with someone that does not know much about Autism is overcoming their need to relate.

Which sounds really odd, doesn’t it?

The Problem

Here’s the problem: for every sign of Autism that I explain, the response is often “but a lot of kids do that”.

And when that happens, you kind of have to go…  “yeah… a lot of kids do do that, but not like this and not with the combination of all of the other things my child does.”

Here’s a quick laundry list of Autism symptoms, off the top of my head, where “a lot of kids do that”:

  • meltdowns
  • not listening/ignoring
  • get aggressive
  • get bullied
  • be shy
  • picky eating
  • have trouble sleeping at night
  • speaking delayed
  • miss milestones
  • be repetitive
  • need routine
  • wander off/elope
  • refuse to look you in the eye
  • be brilliant

The list goes on and on… and when your child is having an issue with one of those things and you mention it to someone, often times the response is “yeah but a lot of kids do that.”

Understanding

same but differentThis is why the DSM tends to combine signs, meaning that your child has to have several signs and meet several areas of criteria in order to qualify for an Autism diagnosis.

The truth is, they’re not wrong. A lot of kids do that!

Here’s the thing… most kids go through phases, most kids don’t do these things to the same extent or severity and most kids don’t do many of these things all at the same time… making it a fully quantifiable disability.

And that is what is so maddening when someone responds to me with “but a lot of kids do that”.

It’s a struggle to admit that they’re not wrong and yet they’re so far off base at the same time… how do you explain that without upsetting them? Especially those stubborn family members that are so certain they’ve “been there, done that” and that you’re just young and “finding out what it’s like”.

See, I can see you sneering right now because we all have those family members.

In these cases, it’s best to remember the 3 key points that make your experience different from theirs:

  1. Most kids go through phases. Autism is for life.
  2. Most kids do these things to varying degrees. Autism tends to be all or nothing.. to the extreme.
  3. Most kids do these things one or two at a time. Autism means that several or even all of these signs are present.

If you really want to throw it in their face, you can add a fourth point… that their children were just brats and yours has an actual disability. This often results in a discussion about how much medical experts know and don’t know vs now and then, how they just have to give everything a name these days and so on… so it may be best left out.

Chances are, if you’re like me, it will really bug you every time you hear “but a lot of kids do that” but you have to remember that they mean well. They’re either trying to relate what you’re saying to what they know or they’re just trying to show their support, in their own weird way. That they “understand” what you’re saying because they’ve seen it.

Then you can hand them the gluten free food and/or therapy bills and say “consider yourself lucky that not a lot of kids do that”.

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