Tag Archives | community

A funny thing happened on the way to an autism discussion

By on April 6, 2012 in Autism

I have two boys, one with autism and one without. I happen to think of them equally most of the time and I tend to also talk about them equally.

This sometimes leads to some confusion when I tell everyone that “my son did” something.

And it doesn’t mater what I say he did… it could be the most polar opposite thing that an autistic would do and someone will remark about how their autistic child does that too.

Seeing autism where there is none

These are usually parents but even sometimes autistics themselves who will relate to my younger son, the one without autism. Sometimes it’s understandable, as he may be doing something characteristically autistic, such as shying away from others/crowds, having a meltdown… these things sometimes make me wonder too. Truth is, he’s clearly not autistic. It wouldn’t take you more than 5 minutes with him to see that.

At first it was kinda funny and I’d be sure to explain that I’m not talking about my autistic son… but then it happened more and more until finally I was having full conversations with people about how much this happens to other people too.

Sometimes the mistake is understandable, sometimes it’s a stretch and other times it’s like… there’s just no way.

Setting up the assumption

In a way, it’s a bit leading to begin with… I mean, you’re in the autism community, talking to others in the autism community, in their mind, they’re already preparing for an autism discussion. It’s hard to switch modes once you’re in that frame of mind.

My name in most places is autismfather. So when someone sees my name, they assume that I’ll be talking about an autistic kid. It’s pretty much a given.

This can “direct” the conversation right from the get go. I get that. Still though, I can try as hard as I can to make it clear that it’s not my autistic child that I’m referring to and still get a response about how they can relate due to their own autism situation.

Cameron and Tyler

Cameron and Tyler

Not that I’m complaining

The thing I’ve come to realize is that it’s not really a bad thing, it’s a great thing. The more a typical child can be mistaken for an autistic child, the better. Because it means that the lines are blurring. Even if it is still mostly within the autism community rather than the rest of society.

It’s still a bit comforting to know that my children’t aren’t so different. That I can talk about either, in most situations, and no one will be able to tell if I’m referring to the one that has autism or the one who doesn’t.

Is that how it is for everyone? No, most certainly not. Some people have children that are unable to speak or “function” as would be expected for their age… and so the signs are much more pronounced.

But for me, it’s great to know that Cameron is doing so well that I could mention something that he or his brother are doing and most people wouldn’t be able to tell which son I’m talking about.

It doesn’t make Cameron any less autistic nor does it make Tyler any more autistic, they’re still very different from each other and still both with their respective strengths and weaknesses… but there’s enough of a similarity there that people are unable to just know which one I’m talking about.

And in a way, that gives me hope for the future. For both of them.

Because Cameron is far better off if he can be confused for his brother and, even though some people that think negatively towards autism may disagree, I feel that Tyler is actually better off if there are some ways that he can be confused for his brother too.

Feel free to think he has autism. Feel free to see autism where there is none. I don’t mind at all!

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An attempt to make “autistic” into the new r-word

By on March 16, 2012 in Autism

If you are in the autism community in some form or another, chances are that you’ve already heard all about the uproar surrounding the new 21 Jump Street movie… if not, keep reading.

So 21 Jump Street was a rather popular television show back in the day, in fact, it launched the career of several people including Johnny Depp.. and one other person quite well known within the autism community, Holly R. Peete.

Now, they’re making a movie by the same name but instead of teenage angst, real life, drama and emotion, it’s a ridiculously stupid comedy filled with cheap laughs.

Don’t get me wrong, I happen to love stupid comedies. I laugh even at cheap laughs.

The problem is that in one particular trailer, the one guy looks at a chart that his officers made and says “That looks like s#!t. What are you, autistic?”

Enter the uproar.

You can see it for yourself, it happens around the 3:31 mark:

?t=3m31s

At this point, I want you to re-watch it and this time, imagine he’s saying the word “retarded” in place of autistic. See now what their intention was?

This is simply not ok. This is simply wrong.

There’s many reasons, but let’s look at two of them:

First of all, anyone who knows anything about autistics knows that, while not all autistics are super organized or particularly amazing at building charts… if you were going to go by the stereotype, as is the intention here, you’d expect that thing to be freakin immaculate. Let me put it this way, if they are going for the whole rain man of over the top stereotypical, stupidly, outrageously funny offensive things to say about autistics, that thing would have been the best damn chart anyone has ever seen.

So ya, they clearly don’t even know what they’re talking about if they can’t get the stereotype right… not that it would have been right either but certainly closer to some semblance of reality.

Secondly, this opens a door that starts a journey down a very dark road. Stereotypes, innuendo and hate in general don’t start out at full force… it starts small.

And if this is the type of precedent they’re trying to set for stereotypical movie humour about autism… let’s just say that none of us would want to see where that road will lead.

I’m all for overly exhagerated stereotypes in search of a laugh… I’m all for the extremely over done ridiculousness of what is real in an attempt to get a chuckle… but this is not ok.

For the record, Holly R. Peete, who makes a cameo in the new movie, has said that she had read the script in advance and that line was not in there at the time.

On Twitter, she said:

So thrilled that #21Jumpstreet is getting such critical acclaim- The show brand means everything to me-so proud to an OG but as a mom of a son w/ autism I’d be totally disingenuous to say I was not bothered by the use of the word “autistic” in the film. I’ve reached out to Sony PR & co-director Phil Lords re:why the choice of “autistic” as a punchline is so upsetting to our community.
Phil Lord co-director of #21Jumpstreet said re: “autistic” line: “We set out to make a funny, irreverent & outrageous movie but not to hurt anyone’s feelings. Our stars are the butt of all our jokes and we feel terrible and deeply sorry that anyone would feel otherwise.”

You can read the tweets here:

https://twitter.com/#!/hollyrpeete/status/180375413527298049
https://twitter.com/#!/hollyrpeete/status/180376189796487168
https://twitter.com/#!/hollyrpeete/status/180383033591992321

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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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Understanding… The bigger picture

By on November 16, 2011 in Autism

For the last couple of years, I’ve really been pushing the idea of taking awareness of Autism and upgrading it to understanding and acceptance. I truly believe that, while awareness is a great start, it’s simply not enough in that, being aware of something doesn’t necessarily mean you understand it. And what most autistics need is some level of understanding and, of course, acceptance of who they are.

Understanding of…

The thing is, you don’t have to necessarily understand every nuance about Autism… it would be nice. If everyone just instantly knew all about Autism, acceptance would be a breeze. But you don’t have to.

What you do have to understand is that there is a reason.

When you see someone acting strangely on the street corner, when you see someone being mean and rude in general, when you see someone hitting themself, when you see a person being… not what you expect… there is a reason.

Perhaps the person has a disability/special need, perhaps the person had a really bad day (fired, family member died, lost everything), perhaps the person simply is the way they are… it is not personal. It’s nothing against you.

All you need to do is understand that there is a reason. Rather than say “that person is weird” or to think about how what they’re doing affects you… instead, ask yourself what the reason could be. Perhaps it’s bigger than you think. Perhaps it’s not. But there is a reason.

It’s not always Autism… so it’s not just for autistics that I push for understanding.

But I do know this. If people stop judging and take a moment for greater understanding when they see an autistic acting “against the norm”… then perhaps those people will take a moment for greater understanding in all circumstances.

Don’t let someone lashing out at you affect your day. They had a reason and it wasn’t you. Don’t let someone acting strangely affect how you see people. They have a reason… they’re not strange.

Greater understanding… it starts when you stop taking it personally and judging the person for it.

Acceptance

With understanding comes acceptance… once you come to understand how a person is, how they think and who they are… you accept them.  You may wish to avoid the person who lashes out at strangers when they have a bad day, but you accept them for that.

Same with people with special needs, or even just regular every day people who go about their life differently than you do.

They have a reason for being who they are just as much as you have a reason for being who you are. And if you understand that, you can accept that.

I want for people to accept me for who I am just as much as I want for people to accept my children for who they are. Not because one has Autism and not because one does not. But because they are who they are.

Just One

If you can gain understanding and acceptance for just one new person, someone you see as different than yourself, someone you do not yet know… then you can do it for anyone and everyone.

It doesn’t matter if it’s Autism, Tourettes, Down Syndrome, political differences, religious differences… anything! If you can gain greater understanding and acceptance of anyone… you have the tools necessary to do that for everyone.

Be quick to to understand…. not judge.

acceptance

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My child’s future with Autism, my goals

By on October 25, 2011 in Autism

I can’t set goals for my son, I can only set goals for myself in hopes of making his future a little better. People say the best way to achieve your goals is to write them down. It makes you accountable for them and reminds you of them later.

Anyway, I’ve been blogging for a little while and even had the opportunity to work with a few charities/groups on some things… so it got me to thinking about what I am going to do.

I don’t mean in the vague… “promise to always be there for him” sort of way but in the “what specifically can I do to improve his life by doing things within/for the Autism community” kind of way.

goalsSo here are my personal goals for the future, as they pertain to the world of Autism.

  1. Develop a web/mobile app that will change the Autism Community
    This is something I’ve already envisioned and outlined. I do not have the resources but do have the plan. This, if/when completed, has the potential to benefit each community as well as the global community in incredible ways.
  2. Write a book
    I have begun work on writing an Autism book, one that takes a very different approach from most other books. It’s something I’m very passionate about in that, completing it, may help to raise people’s understanding, not just awareness. This will help in my son’s future in that, the more people that understand between now and then, the better.
  3. Ensure my son is not ignored
    Now, I don’t know how exactly this is to be accomplished… through many smaller goals, I suspect… but should my son desire to speak up about Autism later in his life, in any way he should choose to do so… it is my mission now to make sure that he is not ignored when he does.
  4. Make this my source of income
    This one may sound a bit selfish, but it’s not. I don’t necessarily wish to make money from helping people or “doing good”, however, having to maintain a day job in order to have an income greatly limits my time, resources and ability to achieve all of the things that I would like to achieve. If it was my source of income, I could devote all of my time to doing it. So no, I don’t wish to become rich by any means.. in fact, I could make the same as I am making now, I don’t care. I just need to find a way to work harder, read more, write more, be more involved and the only way I can do that is if doing it replaced my day job.

It’s not a very big list, my skills and resources… as well as my ideas are limited. Having a family of 4 and a day job will do that. None-the-less, the few goals that I do have there are rather hefty.

And now that I’ve shared them with you… I have to do them!

So I will.

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