Posts Tagged educate
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 January 6, 2012 by BsDad
Filed Under: 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
Written on October 18, 2011 by Stuart Duncan
Filed Under: 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
This 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:
- Most kids go through phases. Autism is for life.
- Most kids do these things to varying degrees. Autism tends to be all or nothing.. to the extreme.
- 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”.
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.
Written on September 14, 2011 by Stuart Duncan
Filed Under: Autism
I mentioned on Twitter the other day that my son wants a Nintendo 3DS for Christmas and a few parents got into a discussion about how great the handheld devices were for children with Autism. Also, when I wrote about taking children with Autism out to restaurants, a lot of parents were quick to point out that they often brought along devices as well to help.
So what is it about handheld devices that are so great for children with Autism? What are the downsides?
It’s all about control
Having something right in your hand gives you complete control over it. That means that if you pause a movie, take a wrong turn in a game, flip pages in a book too fast… no one will be upset, no one will say anything… it’s only for you and you are in control of it.
You don’t have to wait for anyone to do anything, you don’t have to ask for permission before making choices… it’s all yours.
Doing what you love
My son loves to read books and play video games, which means that I can put a book in his hand or a handheld video game system and he’ll keep himself amused for hours. It’s what he loves and it’s right there in his hand.
When we parents think about bringing something to the restaurant to amuse our children, we don’t grab things they hate.. we get what they love.
Sometimes that takes trial and error but most likely you’ll find something pretty quick, especially since they get to control it.
Blocking out the world
The best thing about having something in your hand, engaging your senses is that it allows you to block out other input around you, such as sights and sounds.
If you have Autism, this could be huge. No more restaurant noises bothering you… however, if you’re a parent trying to get your autistic child’s attention while they’re playing a handheld game.. you may find yourself getting frustrated pretty quick.
Putting the three together… you have something you love, complete control over it and you can immerse yourself into that handheld world, blocking out the rest.
These are very important to children in general, more so to those that have Autism. People with Autism focus intently on the things they love, to the point where they need to block out the rest of the world.
Educational
Everything your child absorbs when they can control it, love it and focus solely on it is learned on a scale far greater than any other method.
And it doesn’t have to be an educational program or math book to do it either. There are life lessons in movies, there are problem solving and motor skill building qualities to video games. Your child will gain a lot of valuable knowledge and skill simply by being so engaged by that device in their hands.
There are no distractions, they love it and get to enjoy it even more when they have full control over it. What they learn… they learn. It doesn’t just go in one ear and out the other.
If you do get them reading a book, or doing an educational program on the ipad or something along those lines… all the better!
The one big downside
There is one major problem that most everyone will run into, Autism or not… but a child with Autism will find it even more difficult… that is when it comes time to turn it off.
The more a person loves something, is in control of it and is completely immersed in it as if it’s your whole world… the harder it is to have it ripped away.
I don’t know anyone that had an easy time getting a game, or book, or movie, or ipad, etc away from their child when they’re fully immersed in it. It’s going to be a battle…. at first.
But you can look at it more as a way to practice for the real world because let’s face it… if they don’t learn how to let go now… there will come a time when they’ll have to do it at school, work or just generally in public and if they haven’t had that practice, it could be a huge problem.
It used to be the #1 cause of meltdowns for my son.. he’d do great all day, get a game for a reward and then blow up when it came time to turn it off. But as I said, it “used to be”. He’s so much better now because he’s learned, over time, that it’s ok to put it down. It’s ok to put it off for another time because soon enough, if he behaves, there will be another time.
We just had to endure the meltdowns for a while to get to this point.
Handheld devices such as books?
You may have noticed I referenced books in with the other electronics in my examples… for Cameron, he loves books. A lot of the time, we can get a book from the library or from a friend and he’s more than happy to sit down with that for an hour.
He can’t read much of it (only really small words) but that doesn’t stop him from enjoying it.
You don’t have to force feed your child movies or video games… anything they love will do. Sensory objects, art work, books, money… yeah, my son also loves to sort out coins and such.
That being said, there’s nothing wrong with movies, games or ipads… they’re all helping your child to learn too. You may wish to limit those things a bit more but still, there’s no harm in giving your child a good game or movie.
The escape, the interactions…. all of it is not only good, it’s important. Your child may have a meltdown when it’s time to turn it off but it’s still valuable coping skills they’re learning.
Don’t feel like you’re doing anything wrong by letting your child stare at something in their hands for an hour or two… it’s good for them. It’s a valuable growing tool.
