Tag Archives | debates

Misrepresentation within the Autism Community

By on January 14, 2012 in Autism, General

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

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

Misrepresentation

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

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

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

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

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

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

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

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

Is it really misrepresentation?

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

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

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

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

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

disagreementThe true misrepresentation

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

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

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

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

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

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

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

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

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

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

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

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Triggers – The Good, The Bad, The Ugly

By on May 25, 2010 in 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.

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