Tag Archives | awareness

The truth about how a research study goes from the lab, through the media, to the people

I recently wrote about how the media is causing a civil war within the Autism community… it happens with many communities but obviously my focus is on Autism. It’s why you’re here reading my blog.

In response to that, Josie commented with a link to an image which is both hilarious and, more importantly, true.

It’s a very accurate description of exactly how a study can go from a researcher’s lab/desk, through the PR office to the media, through the national and local media, through the bloggers interpretations and finally, to the people.

And sadly, like a really messed up game of Telephone where the original message doesn’t even come close to resembling the final message… the study gets very distorted until what’s being told from person to person isn’t even remotely the same as what the original study concluded.

So the next time you read about a study in the news, or see something on television… remember this image because chances are, this is exactly what happened before it got to you.

science in the media

Source: http://phdcomics.com (Click for full size)

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Being an Autism Advocate – What I can overcome and what I can’t

There is one inherent problem with being an Autism Advocate. That is that what makes a person the best Autism Advocate also makes them the worst.

Sounds strange, I know but let me break it down for you, as how I see it.

The two best types of people to be an Autism Advocate are:

  1. A person with Autism/Aspergers
  2. A parent of a person with Autism/Aspergers

Who would know more or understand better than these people? Who better to stand up for their rights than the people right in the middle of it?

ObstacleHowever, think about it. Does it makes sense for a person with social and communication difficulties and impairments to be out there, speaking out and advocating for everyone? Does it make sense for a parent, with virtually no time or money, to be devoting time and money that they don’t have to speak out on behalf of others?

Parents are tired, Autistics are introverts…. Parents are busy, Autistics are usually avoiding the crowd.

It creates quite the problem when the best people to speak are the ones that are the least likely to.

There are some exceptions and there are other people that make great advocates, but for the sake of this post, I’m generalizing the majority for the sake of making a point.

What I can overcome

Social networks have really changed the world in that, you don’t have to be a celebrity or own a national news network to reach people.

My blog posts can reach hundreds, sometimes even thousands of people in a day. My tweets and status updates are the same.

And it’s not that what I do is all that great but that the people that follow me or read my stuff are so supportive and kind that they’re willing to share it with their own networks to help me reach out further.

Sitting in the comfort of my own home, I can reach thousands so long as wonderful people allow it and support me.

What I can’t overcome

I work a 9-5 job, like many people but I feel like I could do so much more if I didn’t. I can’t write like I want to, I can’t get out there and spend time with people, I can’t do interviews with people… it’s very limiting.

On top of that, even when I’m not doing the 9-5 thing, I am often doing quite a bit around the house since my wife has Fibromyalgia. Much of my off time, and even sometimes during my work time, I am doing quite a bit of chores around the house.

I live in the middle of nowhere, which means I can’t get to seminars, conventions or even out just to meet some of the wonderful parents, doctors and Autistics within the community.

No money is another big one. I can’t even buy the books that I hear about or that I’ve been wanting to read for so long.

The desire to do more

I have an itch…. I want to do so much more. I want to be more involved, I want to be contributing far more than I am.

But at the same time, I need to be a little proud of myself. I’ve been able to do quite a bit despite having so much limiting me.

The same is true for so many other advocates out there. If you reach an audience, whether that audience is 2 people or 20,000 people… just think of all that you’ve been able to overcome to achieve that. And think about, not only how good that feels, but how much good that does.

I think we’d all like to do more… and the more we do, the more we will want to do. That’s what makes an advocate a good advocate, I think.

If you’re an Autism Advocate, or any kind of special needs advocate, I want you to know that yes, I am bragging a little in this post.

It’s ok to brag a bit, so you should to. Don’t make it a big deal but feel good about what you are able to accomplish.

Even if you do find some obstacles that you are unable to overcome, you should be proud of the obstacles that you can overcome. You should be proud of yourself.

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The TSA responds to Autism concerns over new “behavior screening” being used at airports

tsaEarlier today, I wrote about my concerns over how “Autism symptoms may make the TSA think you’re a terrorist“, in which their new “behavior screening” process is essentially them making conversation with you and looking for any “suspicious behavior” which may indicate that you are hiding something.

At the same time, I emailed the TSA and asked them if they are going to include Autism and other special needs information for this training so as to avoid potentially embarrassing and very real damaging mistakes.

Their reply email comes with a disclaimer that says that I can’t copy or distribute it (which is a tad strange for an email) but I can give you a breakdown of their response.

Separate screening for special needs

The TSA has a special process for those with special needs/disabilities and what ever equipment/aides they may have. They take great care to include all areas (mobility, hearing, visual, and hidden) and has gone so far as to establish a coalition of more than 70 organizations that can instruct and train the TSA on their related conditions and issues.

They didn’t say how all of that would be included or associated with the new program they are testing at Boston’s Logan airport but one would assume that they’d make sure that those issues are brought to everyone’s attention.

Disability Notification Cards

The TSA has developed some cards which you can download (http://www.tsa.gov/assets/pdf/disability_notification_cards.pdf) and fill in. Obviously, as it says, it doesn’t exempt you from screening/questions but it will help to get your message across.

Also, in their email, they advise that anyone travelling with a person that has special needs/disability to voice their concerns and needs to the TSA officers.

The cards are a little more discreet though, than having a conversation about it in front of everyone.

If you need them later and forget about this post or the direct link, just visit http://www.tsa.gov/and search for “notification card” in their search box.

Thank you TSA

Well, they answered my question and didn’t… I still have some concerns. As I said in the first post, terrorists could take these steps which would mean they fake a special need in an attempt to get through the process.

Still though, it is a great first step and it shows that they are fully aware and doing their best to include special needs into their process.

There was a lot more about the program and how it works in the email as well, which was quite nice of them. However, as I said, I’m not supposed to “distribute” it or anything. I’m sure though, if you have questions, they will provide you with answers as well.

Contact them, as I did at http://www.tsa.gov/contact/index.shtm

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How Autism symptoms may make the TSA think you’re a terrorist

airport securityI’m not really a fan of using sensationalist headlines to grab a reader but in this case, I think it’s warranted because the sad fact of the matter is.. it’s true.

A news article was brought to my attention called “Passengers Face Israeli-Style Behavior Screening at Boston’s Logan Airport” which didn’t mention Autism at all yet has a very real and very large impact on autistics.

The sentence of particular interest is:

Those who exhibit suspicious behavior like avoiding eye contact and struggling with answers will be pulled aside for more screening.

Does that sound familiar to you?

From the perspective of the TSA

Let’s look at this from their perspective. They need to be aware of anyone that looks suspicious, meaning anyone that looks like they could be hiding something.

I haven’t taken the training myself but it’s not a stretch to imagine these behaviors as indicators of deceit:

  • lack of eye contact
  • fidgeting
  • lack of confidence
  • anxiety
  • inability to give strong, well worded answers
  • inability to understand metaphors, innuendo, slang, sarcasm, etc from the interrogator
  • unable to tolerate being touched

There’s more but you get the idea. The TSA would witness this from a person and have reason to suspect something…. prompting them to take the person in for further questioning.

Small rooms, very intense atmosphere, very imposing people… if you’ve ever been pulled in for more questions, you know that it’s maddening for the most confident of people.

From the other perspective

You and I recognize that list of “behaviors” as symptoms or signs of Autism. You and I also know that taking that person into a small room for further questioning will not go well.

How often have we read about police having issues with autistics where they simply did not know what to expect? The police, thinking they’re protecting themselves, react to actions they don’t understand from the person with Autism.

This can range from those considered “low functioning” (dependent) autistics to even those that live an independent life but simply aren’t ready to cope with such strenuous situations.

By the way, I’m talking about adults here. It’s not just children with Autism but teens and adults as well. Many people believe, and some studies have backed it up, that Autism is just as prevalent in adults (1 in 100’ish) as it is in children.

So if 1 out of every 100 people that walk through customs at the airport has Autism and a good percentage of those people have symptoms that could resemble “suspicious behaviors” according to the TSA’s training… this could get messy.

We can only hope

Let’s pray that someone there has a bit of foresight to recognize that some people with disabilities need to be addressed. They need to be aware that not everyone that refuses to look you in the eye has something to hide.

They need to understand that someone with Autism, having to get there an hour or two ahead of time and wait, with all that sensory overload all around them, having to be in line for what could be hours just to get to the security…. put it this way, the airport experience can elevate an autistics symptoms long before they ever get to the security personnel.

That will only make things worse.

I understand the need for safety, I understand the need to be certain… but disrupting people’s lives can be disastrous to them. Disrupting the lives of people with Autism or other special needs can be even worse.

A trip through customs, the way the TSA handle things, could leave a very negative, life long impression that can never be undone.

Is there a way to avoid this?

Well, if you have Autism or are with someone that has Autism, you could tell them right away so that they know.

However, this isn’t a guarantee. I mean, let’s face it… what’s to stop a terrorist from realizing the correlation between terrorist behaviors and Autism symptoms (maybe they read this post!!) and then use that as an excuse themselves.

It certainly wouldn’t be the first time someone faked having Autism.

So yes, do your best to make them aware and avoid the headaches in advance but don’t be too surprised if all of your attempts fall on deaf ears sometimes.

Conclusion

Let’s hope they’ve done their homework.

Only their awareness and ability to differentiate can avoid unnecessary altercations with special needs people. And ultimately, I’d think that they want that to avoid negative media attention.

Let’s hope that they can recognize the difference between an autistic and a terrorist.

I can’t believe I just said that.

 

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Should you tell a stranger if you suspect their child may have autism?

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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