Posts Tagged community
Written on January 10, 2012 by Stuart Duncan 
Filed Under: 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.
Pre 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:
- ‘Requiring support’
- ‘Requiring substantial support’
- ‘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.
Written on November 16, 2011 by Stuart Duncan
Filed Under: 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.
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Written on October 25, 2011 by Stuart Duncan
Filed Under: 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.
So here are my personal goals for the future, as they pertain to the world of Autism.
- 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.
- 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.
- 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.
- 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.
Written on September 27, 2011 by Stuart Duncan
Filed Under: Autism
There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.
These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.
However, those not being discussed, and I think really should be, are the care givers.
Not part of a community?
One day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.
You see, she is not autistic nor does she have any children with Autism.
What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.
As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.
She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.
To me, that’s not just a shame, that’s a tragedy.
What one has vs what one does not
You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).
They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.
I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.
Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.
A care giver has to want it, they have to love and they have to need it.
For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.
But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.
When it’s not you…
For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.
Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.
And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.
I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…
But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.
What’s in a voice?
I am very proud that woman spoke up and I am very happy she did too.
No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.
Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.
Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.
She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.
In conclusion
What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.
Even if we end up disagreeing on something, I’ll listen to you.
Chances are though, I’ll likely learn something and I’d hate to miss it.
Written on September 26, 2011 by Stuart Duncan
Filed Under: Autism
I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.
I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.
How this all started
Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.
In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.
Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.
But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.
He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.
Apple, meet orange… begin discussion about steak.
Where does this discussion lead?
Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.
However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.
As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.
A woman replied to me, this is what she wrote:
Me: Autistic parent of an autistic child
I’ll comment on this tomorrow
Person without a disability
Why can’t you just come out and say it?
I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.
Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?
What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.
Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?
Communities?
Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.
What does this all mean?
As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.
We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.
You might as well get money management advice from a random homeless person.
Steak
The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.
There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.
And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.
Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.
We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…
So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.
Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.
In fact, maybe they’re not so different after all.
I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.
