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Knowing your child’s limits

By on August 3, 2011 in Autism

No one knows your child better than you do… at least, that’s how it should be. That’s not true for every single parent but that’s a subject for another post. I digress…

All children have limits, Autism has a way of setting the bar a tad lower so that it’s hit a little sooner, a little more often. However, it’s still a bar to reach and as the parent, you begin to recognize where that bar is and how far away your child is from reaching it.

The terrible twos

angerIt’s usually around the age of two when that limit begins to show itself in a recognizable fashion. It’s around this time that afternoon naps stop happening as part of a routine and begin happening as a way to calm the storm.

For what ever reason, when children get tired… they do one of two things:

  1. They put their head down or against what ever they have next to them, unable to keep their eyes open any longer, then fade away into dream land
  2. They build momentum, gathering energy from the depths of their being and turn into very loud, very hateful little monsters that freak out at seemingly anything and nothing

Does any of that sound familiar? Do you remember those days?

Anyone that has a child older than 2 recognizes the “uh oh, I think someone is ready for a nap” part of the day where nothing can keep a child from getting upset.

Autism and the years that follow

The reason that it’s called the terrible twos is that children grow out of that, they stop having naps and hopefully stop testing you so much.

With Autism though, that may not be the case. Well, let me rephrase that… they may stop napping, they may stop testing you but they may still be reaching their limits just as easily as ever.

For example

My son Cameron, 6 with Autism has long outgrown afternoon naps. His little brother Tyler, 3 without Autism, has now outgrown naps as well.

However, there are still days when Tyler is very obviously tired in the afternoon and not happy with anything. On those days, he’s sent off to bed whether he likes it or not.

It’s much more rare but the same thing happens with Cameron, even to this day.

If he’s having a bad day, if he had a long day the day before, if he woke up too early, if he went to bed too late…. any number of things and in fact, sometimes it seems as though there’s no reason at all…. sometimes he’s simply just at the end of his rope far too easily, far too often.

Today was one of those days.

I work from home but we still have a babysitter during the day when my wife works… as I can’t really work and take care of them at the same time. Well, Cameron was at the end of his rope.. outright defiant and screaming at the baby sitter. So I had to step away from my computer and make an appearance.

It was very clear to me that Cameron had reached his limit and wasn’t coping with it.

Sometimes Cameron, and most autistics really, learn how to deal with it themselves… seeking out a quiet area to be by themselves, or even just sitting back and doing something so as to sort of “power down”, as I call it, to just relax for a bit.

Cameron was clearly not going to be powering down today on his own so I had to step in, get him to his room and inform him of his need to have a nap. He objected, quite loudly, but that was that.

Almost 2 hours later, he emerged from the room… a completely different child. TWO HOURS! So ya…. he was tired!

Pay Attention

You know your child and you know when they’ve gone beyond the point of no return. Meaning, they can’t calm themselves back down, they can’t seek out the quiet, relaxation they need on their own… you will have to be the bad guy and tell them that you don’t care what they want, they need to calm down.

Once completely out of control, they could hurt themselves or others… even if not, sometimes the grief is so strong after that they feel guilty for days for how they acted.

If you can’t avoid it from happening before hand, you have to step in and do something as it happens before it gets out of hand.

Know your child’s limits.

Comments { 6 }

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

By on August 2, 2011 in Autism

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

By on August 2, 2011 in Autism

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?

By on August 2, 2011 in 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.

Comments { 4 }

Autism and Google+: The potential for a new Autism Community

By on August 1, 2011 in Autism

Google+ AutismI’ve been using Google+ for a little while now (being relative since it’s only a month old) and the way I see it, Google+ could radically alter the Autism Community online forever… that is… if it really does take off and people use it.

Let me tell you a little bit about how it’s different, some very powerful ways to use it and a couple of surprises at the end that I think will really intrigue you.

The advantage over other social networks?

Facebook lets you share with friends. You can start to branch out a bit but really, the people you reach on Facebook are people you’ve already reached in some way.

Twitter on the other hand is a bunch of connections with people you don’t know. This allows for a much larger network, obviously, however your network is your network. That is to say… what you say is answered by your network. Other people don’t get to see each other’s replies.

So if I ask for the answer to world peace and someone answers me….

  • Facebook: I see it, my friends see it and my friends see my friends replies.
  • Twitter: Only I see it. No one sees that reply come in unless they follow me and the person who answered it.

Google+ is entirely different in that you can circle (a lot like following on Twitter) so you can pick and choose as you wish, like Twitter. The difference is that when someone replies to me, everyone gets to see that reply. The secret to world peace just went viral!!

Let me put it this way… you may only be in 3 people’s circles… but if I am in 200 people’s circles and ask for the answer to world peace and you answer, the other 199 people in MY circles  get to see that answer.

From there, those 199 people can circle you, you wise person with such a great answer! Think about it, no matter how quiet of a person you may be… that answer never would have been heard because you don’t know the secrets to social networking and self marketing but now, you just gained an audience of 200 people that you didn’t have before simply by answering me.

The potential for network and community building is astronomical compared to the other networks. And your brilliance, no matter how quiet, has a chance to shine.

So what are circles? How should I use them?

Think of circles like Twitter’s lists… it helps you to sort the people you follow into different categories. Think of them as “circles of friends” where you may have a circle of co-workers, a circle of family members and so forth.

The thing to remember is that some people fit into multiple circles. A co-worker could be a family member. So that person would fit into both circles.

In this way, when you share something on Google+, you can choose which circles get to see it. For example, a family reunion update would be shared with your family circle and not your co-workers.

How do I use Circles?

I will give you a run down of the circles I use, as they pertain to autism. This is my list of circle names:

1. Autism
1.1 Autism Parents
1.2 Has Autism
1.3  Autism Advocates
1.4  Autism Charities
1.4.1  Autism Speaks
1.4.2 National Autism Association
1.4.3 Autism Society
1.4.4 Autisable.com

This may look a little strange at first but let me explain.

First of all, EVERYONE that is involved with Autism is put into circle 1. From there, if they’re parents, I put them into circles 1 and 1.1. If they have autism or aspergers, they go into circles 1 and 1.2. If they are advocates (don’t have autism or a child with autism), they go into 1 and 1.3. If they are a charity (as of this writing, I think only Autism Speaks has a Google+ account), they go into 1.4. If they’re an employee of an autism charity, let’s say Autism Speaks, they go into circles 1, 1.4 and  1.4.1.

Now, if I want to share something with only Autism Speaks employees, I share with circle 1.4.1. If I want all autism charities and their employees to receive it, I choose circle 1.4. If I want everyone involved with autism to read it, I choose circle 1.

By breaking it down into sub categories like this, you can include everyone, sub groups or specific people. It saves me from having to select 5 circles when I want to share with everyone. I can just choose one circle this way. Like wise, I can share with just fellow autism parents and not bother others, if it’s parent specific.

Wait, autism charity employees?

That’s right, I have started comprising a list (it’s small right now) of people of interest on Google+ right now.

Google+ gives us an unprecedented ability to reach people on a much more personal level. A huge amount of Google+ staff have profiles, Mashable’s writing staff have profiles, even Facebook’s top staff have profiles!

And so it is with Autism charities as well. Here are some notable people to circle:

Autism Speaks:
Marc Sirkin – https://plus.google.com/103356743690962786437/posts?hl=en
Peter Bell – https://plus.google.com/114190864043437006493/posts
Allan Benamer – https://plus.google.com/114400648902272848682/posts

National Autism Association:
Wendy Fournier – https://plus.google.com/101658238903147028726/posts

Autism Society of America:
Amanda Glensky – https://plus.google.com/116516874708262899866/posts

Autisable.com:
Joel Manzer – https://plus.google.com/115997835837459639477/posts

If you know of more, or if you are an employee of an autism charity/organization/company looking to make connections, please contact me so that I can add you to the list.

Hangouts

Hangouts are super cool webcam chats where, instead of talking to one person, you can talk to up to 9 others! And it is quite the intelligent system where everyone is shown in a thumbnail but the person making the most noise (ie, talking) is shown in the main window (large webcam image).

I’ve already approached some people and have found some interest in doing a regular webcam chat where people can ask questions, get support and even talk to notable people such as the staff of autism charities.

Sorry, you will need a webcam to participate in this and yes, we’re going to have to see you… but we’re all tired, we’re all needing some support and having some questions so there’s no need to be shy.

Look for this to start happening soon!

Let’s start networking and grow this community

If you were to view my “about” page on Google+, you’ll see a link to one of my updates (https://plus.google.com/106357905229054139137/posts/3bYSbVAqk8V). Basically, I created this as a way for people (you) to introduce yourself and also as a way of knowing how you fit into the autism community.

You certainly don’t have to rush there to be a part of the group or anything but it gives you a good idea of how to begin.

Introduce yourself, put a little bit into your bio, as you would on Twitter, so that people know how to circle you. You have to remember that this isn’t a “friend” network… also, people might not even recognize you since you’re “encouraged” to use real information rather than just a twitter username there.

So if you sign up and don’t use a familiar avatar or username, people might notrecognize you and know how to circle you.

And don’t be shy about circling others. If you see people commenting, if you see people sharing… circle them. The bigger and better the community, the better we can grow and support each other.

By the way, you can find me here: https://plus.google.com/106357905229054139137/posts

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