Posts Tagged emotions
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 September 13, 2011 by Stuart Duncan
Filed Under: Autism
There’s a lot of talk around the Autism community lately over emotions.. such as whether or not there should be a grieving period.. or whether or not we should be feeling any guilt.
“Should be”…. such a funny concept in a world of differences.
In my experience
I can only tell you about how it went for me… what I felt and didn’t feel. Because the truth is that everyone is different.
I have a pretty typical story in that I had heard of Autism but didn’t know much beyond that until I started to look for answers as to why my son acted the way he did. A lot of repetition, lining things up, aversion to a lot of foods and so on and so forth, had me reading website after website to see what it might be.
I recognized these signs rather early on and was quick to research all that I could… and despite a lot of conflicting stories, I can honestly say that I never once felt guilty about it. I never once thought that there was something that my wife or I did wrong or that there was something that may have caused my son’s Autism.
It wasn’t a foreign concept to me though, as family member after family member and friend after friend asked if we knew what had caused it, or if we were afraid that we had done something to cause it.
As for grieving… I think it’s funny how people have different interpretations as to what grieving is. Most people think that it means breaking down into a crying fit and feeling complete remorse and being depressed for a while, etc, etc.
For me, I think of grieving as simply being worried about the future, about missing the things that you can’t do with your child, or things you won’t be able to do… thinking about potential bullies, potential other issues that may come around (seizures, allergies, diets, etc).
No, I’ve never broken down crying and no, I have no problem what so ever with who my child is or who he will become.. but a small part of me does grieve from time to time. I still want more for him… more that Autism will make very improbable (not impossible).
“Should Be” does not mean right or wrong
What I try to tell people is that there is no right or wrong way to feel. Granted, I do feel that feeling guilty serves no purpose and benefits no one… but it’s not wrong to feel guilty. If anything, the only thing I could imagine as being wrong is if you felt nothing.. if there was no mixed bag of emotions. Because hearing that your child has Autism is a bit of a big deal. It can change the course of the rest of your life.
There is just so much emotional baggage that comes along with an Autism diagnosis that we can’t possibly all feel the exact same things at the exact same time. Some of us might not feel guilty, some of us might not grieve. Some of us, sadly, won’t ever be able to accept it.
It’s not right or wrong, it’s just different.
Fear of the unknown
For most of us, Autism is a very big unknown that can take all those plans for the future that you had and make your future into an unknown as well.
Unknowns are scary. We fear them. We try to justify them, give meaning to them, master them… we try to find the cause of it.
Eventually, hopefully.. we come to accept them. Not just Autism, but unknowns in general. There are just some things we can’t control, that throw our lives off course and we can either feel guilty about it, grieve over it or… accept it.
If you read posts by people that are grieving, don’t judge them because you didn’t grieve. If you read posts by people that feel guilty, as if they are certain that they did something wrong. Reassure them but don’t judge them. They don’t really need to feel like they’re doing something wrong by feeling like they’re doing something wrong.. ya know?
Everyone is different and as much as we’d like for everyone to hate the people we hate, to fear what we fear, to accept what we accept and so on and so on.. it’s just not going to happen.
We all deal with life differently. It may seem that some people deal better than others, but the truth is that we just deal with it differently.
Written on September 9, 2011 by Stuart Duncan
Filed Under: Autism
This year, my younger son Tyler (3yrs old) started JK… his first time in school. He’s so very excited for it because he’s watched his older brother, Cameron (6yrs old), go off to school for 2 years now.
And even though Tyler is still only 3, he’s more than ready. He can count pretty high, knows his alphabet, goes to the bathroom on his own and most of all… he’s just so crafty. He loves to paint and build things… school is so perfect for him.
Still though, even when it goes perfectly for the most willing of children, school can be overwhelming for the first little while.
Still bragging about this school
Cameron - Big Brother
I’ve written many many times about how I picked up my family and moved over 850km away to get Cameron into this school because of their amazing Autism classes… this year, Cameron is back for his 3rd year (grade 1 this year!) and he gets the same teacher, the same teachers assistants and some of the same classmates.
A couple of children have gone off to IBI or to another classroom but his familiar friends are still there. Cameron is doing exceptionally well thanks to this.
There is another added benefit though, which I have not discussed, because we had not yet reached that point but this year is the year… his little brother gets to attend the same school!
It’s a normal, run of the mill public school but they have 4 special classrooms especially designed and equipped for children with Autism.
This means that while Cameron is in his class of 4 children (including him), with 1 teacher and 2 aides…. Tyler, his little brother, is across the hall!
Overcome Autism? No problem with the right motivation
Cameron has never had a huge problem with hugs or showing his feelings but then again, it’s not as natural for him as it would be for most other children either though.
Trying to get that out of him where he’s not quite as comfortable is even tougher… like say, at school.
But that doesn’t stop him when Tyler needs him!! Oh no.
Tyler knows that his big brother is across the hall and when the anxiety gets too much for him, he knows to ask his teacher… so his teacher takes his hand, walks him across the hall, Cameron stops what he is doing, gives his little brother a big hug and tells him that he’s ok… and Tyler goes right back to his class, feeling so much better.
This is huge!
Cameron told me that he remembers when he first went to school… for the first 6 months or so, he had a very hard time because he “didn’t feel safe.” I told him that sometimes, Tyler might feel that way too but mom and dad can’t be there to help him.
Cameron stepped up to the task in a huge way and is genuinely eager, excited and willing to help out his little brother. He wants be the big brother that Tyler needs.
Not a surprise to those that know him
Tyler - Ready for his first day!
While I am excited about this, I’m not surprised.. and I’m sure those that know Cameron won’t be surprised by this either.
Still though, as a parent, I’m still so very proud. Also, if you’re a parent of a child with Autism, I’m sure you can understand that even though I’m not surprised, I’m still… well, I wasn’t going to believe it until I saw it.
Cameron amazes me every day, as does his little brother, but I still put no expectations on him before hand. He won’t disappoint me if he doesn’t do it, he won’t surprise me if he does do it… but it’s never necessary because sometimes, he just doesn’t do what some might expect of him.
And while it doesn’t surprise me, what does get me is that he’s so willing to stop what he’s doing… to break routine… to show affection right there in front of everyone… and to know and understand what his little brother is feeling.
In that moment, when his brother needs him most.. he is not autistic. There is no Autism. There are no teachers. There are no parents.
There is only Tyler. His little brother. And he loves him.
Written on June 3, 2011 by Stuart Duncan
Filed Under: Autism
If you are familiar with Autism in the slightest, you’re likely familiar with the term “meltdown.” There is no specific definition for this in terms of an Autism behaviour so I’ll give it a go:
A term describing a complete lack of control or reasoning during a temper tantrum as a result from prolonged or overwhelming stress
That’s how I would define it, I think it is specific yet vague enough to explain what it’s essence is. The problem is that it has more specifics such as what causes the stress, such as sensory overload, fear, anxiety, frustration and so forth… which means that there are quite a few things that can trigger a meltdown.
Lack of control or reasoning
The key point, I think, is the “complete lack of control or reasoning” portion of the definition. Again, this sounds specific but in a sense, it’s actually kind of vague and I’d like to explain why.
When you hear “complete lack of control”, you tend to imagine someone flailing around, screaming and maybe even writhing on the ground but it’s not always that way. What you’re picturing, most likely, is a child.
However, as those children grow older, that type of meltdown will become less likely, seeming far more controlled yet still fitting the definition that I laid out before you.
As an Autistic gets older and they develop language, structure and maybe even a life of their own… they can gain a lot of control over their emotions and thus, learn how to avoid meltdowns. Also, when they do happen, they’ll look entirely different from what you pictured with the child on the ground.
An adult, or even an older child that can speak, may lash out verbally, maybe even physically… they may say the absolute most hurtful thing that enters their mind, they may hurt themselves, they may seclude themselves away from all others, they may even have what would look to us like a nervous breakdown.
For the most part, all of these would appear to defy the definition. People can stop themselves from saying hurtful things or from hitting someone or from hurting themselves. People can avoid a nervous breakdown if they calm down, breath deeply, relax… people can seek out help rather than become isolated.
These seem like choices to us because as we develop, we learn how to recognize these situations and make those choices.
That’s not always true for an Autistic.
A meltdown is still a meltdown even if it seems like something we’d have done by choice. An outburst, a hateful response, violence… these things may be happening completely beyond the Autistic’s control and reasoning.
When this is the case, when it is beyond their control, a grieving period usually follows where there is extreme levels of guilt that they have to get through.
And you and I would think that if there is that much guilt, they’d try harder to not do it next time, or “learn from it” but you have to understand, that’s probably not possible.
I titled this post “volcanic emotions” for a reason… if you can picture a volcano where pressures build and build and build for a while and then finally hit the breaking point where all that pressure is released into a huge explosion of ash and lava… you can then also picture what is happening inside many of these people with Autism.
Young and old, the pressures of stress tend to build and grow until eventually they’re released in an explosion and that explosion is a meltdown. Whether it be flailing around on the ground screaming or lashing out with hurtful words and aggression… it’s beyond their control.
Doesn’t therapy help with this?
Yes and no… it helps. The real progress is made when the person is able to recognize the rising pressures of the stress and take measures to avoid it reaching volcanic proportions. This is a way to avoid it from happening, not from controlling it when it happens.
Why isn’t there a way to control it when it happens? Well, I’m not a scientist and even if I was, I wouldn’t bore you with scientific terminology however I will say that recent studies have shown actual physical differences in genetic make up, pathways, and more within the brain of those with and without Autism. Physical differences.
That means their brains physically work differently. That’s not something you can change with therapy.
Forgiveness
Therapy is important, avoidance is important… we all function so much better without stress, without nervous breakdowns and certainly without meltdowns in our lives.
If we can’t control ourselves when it happens, then it’s certainly important to learn how to avoid it from happening at all.
However, in those cases and situations where it’s unavoidable and it does happen.. it’s important to forgive those that went through it as well as to forgive ourselves if we were the ones experiencing it.
We can’t be mad at those that did or said something while out of control nor can we be mad at ourselves. Actually, we can be mad, being mad is quite alright and healthy. After all, those things did hurt. However we must also be able to forgive.
Whether you hurt someone or someone hurt you, you have the capacity to forgive… especially if they feel guilt, especially if they still love you.
It’s not an easy situation to be in, if someone has meltdowns regularly or even rarely… you feel that they should stop after a certain amount of time but they don’t. And it begins to build pressure and stress in yourself… making for two sources of stress coming together.
If you can’t understand and forgive… for their sake and yours… the pressure will only continue to build until a whole new volcano of emotions erupts.
Written on May 25, 2010 by Stuart Duncan
Filed Under: Autism
In Autism, there are a lot of different triggers and even different types of triggers. At the core, a trigger is something that sets the Autism off. In some cases, it may be what initially brings the Autism to light, or… ’causes’ it in children. In other cases, it may be just what sends a child into a furious tantrum. There are also good triggers, which can cause a calming and comforting effect in Autistic people.
Probably the hottest of the heated debate topics is the vaccination trigger. Many parents witness first hand their child’s descent into Autism shortly after getting their MMR vaccinations…. going from a loving and talkative child into a shell of a child that can not speak, make eye contact or play normally. This issue is probably the one hot button topics which actually brings parents into the violent, out of control monsters that they so desperately fight every day to keep their children from becoming. It’s primarily due to large pharmaceutical companies having a hand in making sure that people keep paying for those vaccinations and lining their own pockets. Whether that’s true or not is not really my concern, I’m not here to settle any debates for you. I’m just running down a list of triggers, in this case, the ugly. Not just because of what many people say it can do but because of what it brings parents to do. I’ve even been silenced on one popular Autism website simply because I question both sides, rather than say what they want to hear.
Another hot button topic is the GF/CF diet which doesn’t really bring out the monster in most parents, as I think it’s safe to say that most parents agree that either it works, or simply doesn’t work in their case. Basically, in this case, the gluten/casein can trigger a drug like effect in the brain and send your child into a very disruptive, very violent state of confusion and disobedience. It’s definitely high on the bad scale of triggers.
However, not all triggers have to be bad and that’s the point I’d like to make in this post… there are counter triggers, the good side which can not be ignored. The problem is, they can be harder to find. I’d like to give you a couple of examples and then give you a very real example from this last week-end.
Many people have said that horses can be very therapeutic towards coping with Autism, in fact, can snap them right out of it while riding. There are even some ‘camps’ set up where Autistic children can spend some time with the horses and learn to ride. Whether it’s a bond with the animal, the motion of the riding, the feeling of the ride… no one can say for sure, but it’s widely regarded as a great trigger for handling the overwhelming nature of Autism.
If you’ve had a chance to see the Temple Grandin movie, you will recognize the squeeze machine. Temple Grandin, after witnessing a similar device used on cows, created her own device which would simulate a hug without the need to touch anyone. She would use this to calm herself, to steady herself and to handle extremely tense and overwhelming situations. She has gone on to do studies and found that it works for most people, not all, but most… Autistic or not.
As for this week-end, I’ve come to realize that my son has his own good triggers. First, we took Cameron to visit some family that live on a lake. The moment we got out of our vehicle, Cameron began begging to go for a boat ride. When I say beg, I mean he really begged. Unfortunately, that wasn’t the plan so it didn’t happen until after dinner…. however, it kept him happy just knowing it was there. After we all ate, he got his chance at a boat ride.
He sat down in the boat, excited and eager… as the boat pulled away from the dock and slowly made it’s way into the lake, Cameron turned to his mother and said “ok mom, we can go home now.” It wasn’t that he was scared, it wasn’t that he wanted the ride to end… it was that he was content, 100%, totally, completely… content. It was as if I had been starving, spent an hour at a buffet and said “ok, I’m done, I can go home now.”
Then we took Cameron swimming, shortly after getting home afterwards, Cameron put his hand on my cheek and said “Dad, you’re my best friend ever”… then the next day, while swimming again, he came over to me and gave me a kiss on my cheek.
I don’t know if you could fully ever understand the depth of that without having an Autistic child yourself, and if you do have an Autistic child… you would surely agree, getting that kind of voluntary, unexpected and completely random positive emotion out of an Autistic child is truly wonderful.
You must look for these times, these triggers, these moments because as important as it is to know what the bad triggers are, it’s equally important to know what the good triggers are. I really don’t want my son to go through the hard times and so I shield him, but I can’t shield him from everything all the time no matter how hard I try.
Ultimately, shielding is good, but limiting. It doesn’t bring happiness, it doesn’t bring contentment, it doesn’t bring all the good things.. it just prevents the bad things. And while important, it won’t get you the hugs, kisses or admissions of being your best friend.
Find those good triggers, find those few things that will make your child truly happy. They may be more rare than they should be but they’re out there… and when your child swims over and gives you a totally random kiss on the cheek after years of rarely getting so much as a hug…. it’ll all be worth it.
