About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.
Author Archive | Stuart Duncan

Misrepresentation within the Autism Community

By on January 14, 2012 in Autism, General

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.

Misrepresentation

John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

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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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Some Autism resolutions for New Years

By on December 31, 2011 in Autism, Autism Holidays

I’m not really a big resolutions person. I believe that people should try to improve on themselves all year round, not just because they bought a new calendar.

Still though, it is a tradition and in that sense, I thought I’d offer up some thoughts on things that we all (or at least, most of us) could resolve to do a little more, less or better in the new year.

Some suggestions

2012 new year wishes on sea1. Stop using the word “retard” or “retarded” to describe things, situations or people that you do not understand or that makes no sense to you. In fact, stop using the word entirely.

2. Stop assuming you know a person’s life story by a brief moment in time. The lady at the store with the screaming child? You don’t know her. You don’t know her child. The homeless guy that only wants to share a smile with you? You don’t know how he got to be homeless. It could have been no fault of his own. The girl that gave up her baby to adoption, you don’t know her reasons or how it could have been if she didn’t. You do not know people based on 1 short experience.

3. Finish a debate or argument without using a single derogatory comment, name calling or reference to their own history/personality. Pick a disagreement, or try to do it with all disagreements, and make every effort to disagree based on facts, not emotions or personal opinions.

4. Stop making it your life mission to correct people on every little thing. The autistic person that calls themself autistic? Maybe you shouldn’t tell them to use “people first” language. The person who’s tried the gluten free diet but found no benefits, maybe they don’t need to hear why you think they are wrong. Inform folks, don’t feel you need to correct them all the time.

5. Stop reading into everything until you find the negative. Take a compliment, a kind thought or a good intention as it is intended and stop trying to find a way for it to be a bad thing. Ulterior motives, unintended meanings, alternate ways of interpreting… just stop. You know what they meant.

6. Slap yourself (metaphorically) the next time you tell yourself that you can’t do something or that you’re not good enough. Whether you have Autism or not. The next time your inner voice tries to stop you from doing something you really want to do… remind yourself that you promised to not listen one time… and do it.

7. Take something you feel negatively about and write out a list of 10 positives about it. If it’s Autism, write out 10 positives about Autism. If it’s city traffic, write out 10 positives about city traffic. It doesn’t matter what it is… just something that you really do not like. The goal is not to change your perspective such that you will now like it, but to realize that, if you give it some effort, you can find something good in the most unlikely of places… if you just stop the negativity for a moment and try.

8. Place a value on your time. Make “free time” a thing of the past and figure out how much your time is worth. Don’t joke about it, figure it out, even if it’s too low or too high. Now, the next time you find that you’re bored, being lazy AND… the next time that others ask you do things for them, keep that value in mind and ask yourself if it’s really worth your time… or if there is something better you could be doing. If your time is valuable (and it is), use it… do something with it. Get creative.

9. Donate or volunteer for something. If you did #8, you know that you are worth quite a bit. So put that value to good use and give some money or time to those that are in need of both. It doesn’t have to be a lot. But if you’re like me, it’s one of those things you have every intention of doing but just don’t.. or don’t do as much as you’d like. Make it happen.

10. Look in the mirror and tell yourself “I’m proud of me”. Do this once a day if possible but even to do it just once in the new year, do it. In the mirror, looking yourself in the face. You’ll know if you’re being sincere or not… and do it until you are.

If you have Autism, be proud of who you are and in your strengths. You do have them. Be proud that you are you, no matter how much others may try or wish to change you. Be proud. You are not the exception… you are exceptional.

If you have a child with Autism, be proud that you’ve handled the looks, handled the added stresses, over come the struggles, that you’ve done more than you thought you were capable of for your child. Be proud that you’ve surpassed those “you’ll see” comments from family and friends when you first had a baby… those people, who thought you were in for a shock.. had no idea what it could really be like. You do, you did it.

Even if you have no disorder, no struggling loved ones… even if you look in the mirror and think “I have none of those reasons, why does my life seem so hard?”… stop thinking that and tell yourself “I’m proud of me.” Life is hard… for everyone! Don’t beat yourself because you have it worse and certainly don’t beat yourself up because you don’t. Be proud of who you are… it’s not a competition to see who has the most scars. Life dishes them out no matter who you are and it’s up to you to face those scars in the mirror and be proud of yourself.

Happy New Year

Stop making resolutions to lose weight, stop smoking or other “typical” ideals that you think that society would want you to make and start thinking about ways to just be happy with who you are.

Put aside any negativity that you can, incorporate any positivity that you can and just give it a try when you normally wouldn’t have.

Autism is a struggle, whether you have it or devote your life to a loved one that has it… it can be hard. Life itself, even if all goes well, can be hard.

Don’t let negativity in your own mind make it harder… and certainly don’t use that negativity to make someone else’s life harder.

Smile when you don’t feel like smiling. Find a positive where you see only negative. Tell yourself your proud of who you are even when all you can see is regret.

Be a little more understanding of others, accept them for who they are. Be a little more proud of who you are and what you’ve accomplished. You’re a valuable person, even in your free time!

Have a very happy new year… you deserve it.

Comments { 3 }

Why don’t you celebrate New Years Eve?

By on December 29, 2011 in Autism, Autism Holidays

I get this question a lot, because it seems very much out of the ordinary to not be up at midnight, getting drunk and kissing someone at the stroke of midnight. To not do it is… blasphemy!

The answer is really quite simple.

happy new yearI wake up at 5am many mornings, sometimes earlier, sometimes I wake up often through the night. I have 2 children that require a lot of my time and energy even when I work 8 – 10 hours a day. By the time it’s 9pm and my boys are asleep, I’m ready to go to bed myself but I can’t because there is still more work or chores around the house that need doing.

So I get to bed around 11pm and again, sleep 6 hours or less if I’m up often due to the boys… and do it all again. And I do this 356 days a year.

So already the answer is forming…. but there’s more.

My oldest boy, Cameron, has Autism. That means that we can’t just hire any teeny bopper with a need for some cell phone minute money to come in and take care of my children.

In fact, even most responsible adults are not really ready to take on that task. Only those that know him well. And those people tend to have full lives of their own already so are not readily available.

Take a special day like New Years Eve and.. well, those older, responsible, living life people are already doing something on New Years Even that doesn’t involve being stuck in my living room while some kids that are not theirs are sleeping.

So no… we don’t go out and celebrate New Years Eve. In fact, we don’t even stay up until midnight.

Because when you add it all up, when you really stop to think about it… the needs of your children, the happiness you get from their achievements, the importance of you being there for them when they need you… all of what entails being a parent…  Dec 31st becomes just another night.

You’ll still be ready for bed at 9pm that night.  The kids will still wake up early the next day.

Besides, it’s not that I don’t “celebrate” it… it’s just that I don’t do what everyone else thinks I’m supposed to do. I give my wife a hug and kiss. We say “Happy New Year” to each other and to others as well.

It’s just different and believe me, different is one thing that we’ve become quite comfortable with around here.

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No one knows your child better than you do, not even Santa!

By on December 27, 2011 in Autism, Autism Holidays

Usually in the world of Autism, this refers to teachers, therapists and doctors but the truth is, it can apply to anyone… this year, it was even proven to be true of Santa!

nintendo 3dsPeer Pressure

So back in July, Cameron told us that he wanted a Nintendo 3DS, and reminded us of that fact every week for the next several weeks. He even knew which games he wanted.

Then in October, Cameron’s friends at school got him hooked on Bey Blades… a spinning top kind of battle game. He loves them. His requests for the 3DS died down… he still wanted one, but he didn’t talk about it anymore.

Here’s the thing though… what he wanted and what he wanted due to peer pressure (his friends wanting)… are two different things.

Video Games

If you’ve followed my blog, you know that Cameron is a video game boy, through and through. He loves his video games more than anything and they love him too. He’s developed some great motor skills, reflexes, problem solving skills and more.. all due to his video games.

To give you an example, Tyler (his little brother) got the new Sonic Generations video game on December 4th (for his birthday)… so Cameron got to play but played it in much more limited portions than normal. Since it wasn’t his game, he didn’t get much play time at all. Maybe an hour a day, some days no playing at all.

And yet, he finished that game less than 2 weeks later. Less than 14 days and he had beat the boss and won the game. That’s pretty good for anybody, much less a six year old with Autism.

Anyway, back to the 3DS… my wife and I decided to get him the 3DS from us, since it’s what we know he really wants and we left the Bey Blades to Santa… who was very generous. He got 7 of them in total and a stadium to have them battle in!

And the winner is…

Christmas morning came and went, wrapping paper everywhere and more boxes than our recycling bin can handle… and 2 days later, he’s just now starting to open his Bey Blade packages to try them.

What has he been doing all this time? Playing with his Nintendo 3DS!

Truth be told, the only real reason that he even played with his Bey Blades this morning is because we don’t let him play video games in the morning.

Things will change though, once he goes back to school and his friends are playing with their Bey Blades… and he can’t take his video games with him.

But still, the lesson is… no matter what his friends have, no matter what he changes his mind to… we know him better than that.

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