Written on January 14, 2012 by Stuart Duncan 
Filed Under: 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.
The 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?
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 December 31, 2011 by Stuart Duncan
Filed Under: 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
1. 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.
Written on December 30, 2011 by JeffsLife
Filed Under: Autism
“Alex, we’re going out to get presents!”
“Presents.”
“You’re going to buy presents for Ned and mommy. What are you going to buy for Ned?”
“Buy for Ned.”
“What are you going to buy for mommy?”
“Buy for mommy.” We go through this three times.
I’ve decided that it’s time for Alex to learn how to buy presents: walk to the store, pick out crap for those who mean something to him, walk to the register, take the bills from me, take the bag and collect his change, and leave the store. Then home to wrangle with the Scotch tape, scissors and paper until he has a present to, well, present on one of the waning evenings of Chanukah.
I head out with Alex on the morning of the day after Christmas. He’s silent to my questions as he presses the extra elevator buttons on the way to the ground floor. “What’s Santa going to bring mommy, Alex?”
“Santa mommy.”
We go through this a few times. Outside, I decide to start at the beginning. “Alex, to go shopping for presents, we need money first, right?” We head to the ATM. I slide in my card and punch the buttons while Alex studies the blue wall of the bank. “Look, Alex. Cash.” (Way too much in this year, too.) We head to the local all-purpose drug store, which these days means toys and housewares and all sorts of stuff. I steer him into the Christmas aisle, which should be cheap as hell by this time in the calendar, but isn’t. Mommy wants new icicle lights for the window.
“Alex, what does mommy want?”
“Mommy want.”
“What does mommy want?”
He shops like my brother Lee: With just a glance and then a look away, Alex shoots out his hand and pulls out, like a dragoon’s saber, a marked-down roll of Santa wrapping paper. Jill is Jewish. Of all things in this store, nothing screams “Jill Cornfield!” to me less, but this is Alex’s call.
“What do you want for Ned, Alex?” We head to the short toy aisle. Without hesitation he squats to press buttons on the preschool toys that make noise and pull out the detailed plastic farm animals. Apparently Ned wants a goat, a horse and a cow. “No Alex, this is a present for Ned.” Alex counts the plastic animals. “One, two three…”
“Up here, Alex. What would Ned like from here?” From the top shelf, the Nerf Dart refill pack would work, I think, but Alex finds a green plastic truck. Again with the Uncle Lee shopping: shoot out and pull.
“Let’s go pay, Alex.”
At the register, Alex tosses in a red bow that I’ll later examine and determine that he pulled off some display. I don’t think the cashier, with a glance at Alex, charges us for it. I put the twenty in his fingers and he hands it over; I coax him to take his change. Outside the store, he hands me the bag to carry.
I’ve never wrapped wrapping paper for a present. Alex has trouble tearing off the Scotch tape. Pretty soon, though, everything is in its paper, and Alex heads to the living room to watch the iPad. Like often in the holidays after the wrapping’s done, I’m left to think I’ve actually done something.
