Tag Archives | advice

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

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

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 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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Trying to fit in with the wrong crowd

I want to share with you a conversation I had recently with someone that isn’t even on the Autism Spectrum, but as you read, I want you to think about how it relates… because this was advice that I had given her as if she was on the spectrum.

Her story

She is a young woman, mother of two and very loving. She’s never understood other parents who are eager to get their children on the bus to school or off to daycare in order to have a break because she’s always valued her time with her children so much that being apart from them never felt like a break.

She was always great at school, always had a good job and always took her responsibilities very highly. Even so, she still loved to get out into the great outdoors, do hiking, camping and even had her hand in a bunch of sports.

Since having children though, she’s given most of that up for the sake of her children, not that they need her that much, just that she’d rather spend time with them than to be out doing other things.

The crowd

The friends and family she has are quite a bit more carefree than she is. That is to say, they enjoy getting their breaks from their children. It’s not that they don’t love their children, and all children too, as much, it’s just that they also value their freedom.

As such, the crowd tends to go out, drink a lot, party it up and endure the hangover the next day. They are more inclined to find ways to get their children out of the house to make sure that they can be as loud and obnoxious as they can be without affecting the children. Again, they love the kids and they’re really not obnoxious but they have the freedom to be if they so choose without children being there.

The problem

One night, the woman found herself quite down on herself as she pondered her own short comings. She was boring. She was no fun. She was a square.

She began to realize that she didn’t like partying, she didn’t like drinking and she certainly didn’t like being obnoxious. She tried her best to go out dancing with the crowd and she did her best to have fun with them. However, most of the time, she didn’t drink, she didn’t try to have conversations over the very loud music and she didn’t want to stay out too late because her children would be up early the next morning.

She felt like a loser.

Meanwhile, the crowd felt weighed down by her. They depended on her to do the driving, they depended on her to be a part of the high spirits of the evening. And no matter how much she danced or sang or got obnoxious… she was never really one of them. She never quite fit in.

She knew it, they knew it.

You can’t fit a square peg into a round hole

Square Peg in a Round HoleThe reality of the situation is that she doesn’t fit in with the crowd. They like it loud, they like to come home late and they like to be carefree. That isn’t her.

That’s not to say she isn’t fun. As I said, she has her hobbies and activities and she actually does drink. She just likes to drink in a quieter setting where she can talk to the people she’s with…. at a time where she can still get some sleep before her children wake up.

They value their freedom, their drinks, their late nights and their loud music. That’s fun to them. It’s not fun to her… yet she tries. She tries so hard.

Yet no matter how hard she tries, she feels like a loser. She feels like she can’t have fun, she feels like she’s boring.

Is she who she thinks she is?

Think about this. What happens if she finds another crowd that actually enjoys doing what she enjoys doing? Will she still see herself as boring?

See, what’s happening is that she’s trying to have fun doing what she thinks is not fun, in order to fit into a crowd that doesn’t fit her.

She’s altering who she is to fit who they are and rather than becoming what she wants to become, she’s depressing herself because she’s not that person. In the process, she loses who she is. She’s not them, she’s not herself… she doesn’t feel like she fits in anymore. That’s a lonely and dark place to be.

When you try to fit in with the wrong crowd, no matter how hard you try, you become someone you’re not. Either you succeed and you’re doing things you don’t enjoy or you fail and you’re unable to do the things you don’t enjoy… either way, you are left feeling like a shell of a person.

How does this relate to Autism?

More and more, we try to “integrate” Autistics into “normal” classes and “normal” society… we teach our children the mannerisms, what certain expressions mean, how to behave in certain situations and so on and so forth but for the most part, we have to remember that what we’re doing is helping them to fit into the wrong crowd.

That’s not to say that I know what is or isn’t the “right” crowd, but I do know that those people with Autism that are unable to tell what others are thinking or feeling are very rarely going to feel like they fit into which ever crowd they may find themselves in.

When they say that depression is common among those with Autism, you have to realize what it is that we’re not only asking of them, but trying to force on them.

The woman that I talked to was simply doing her best to fit in with people that weren’t the right people for her… she may be unaware of why she’s becoming depressed but she’s still doing it willingly.

With Autism, we’ve given most of them no choice. It’s fit in or you don’t belong.

Can you imagine how hard that is??

We can’t stop helping our children and loved ones with Autism to “fit in.” They do need to be able to navigate the world on their own but we have to remember what it is that we’re asking them to do.

The woman in the story can learn where she’s going wrong and adjust her own search parameters to find the crowd that better suits her.

My son can’t.

The only alternative to help the woman, and my son (all those with Autism) is to help them be comfortable with who they are. To help them to fit in still, but to understand why they don’t quite fit the mold as well or as easily as others do and to be content with themselves despite that.

Recognize why the crowd looks at them differently and why they look at the crowd differently and be happy with themselves despite that. Accept the crowd and the crowds differences as the crowd accepts theirs.

Square pegs don’t fit into round holes. Don’t stress yourself or depress yourself in trying. Be happy with who you are.

When you do understand it and accept it, you’ll feel better about yourself, the crowd will feel better about you and even though it still won’t quite feel right, it’ll be a whole lot better.

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5 things to tell every parent right after their child is diagnosed

Learn, Learn, Learn, Learn, Learn!!

What? Oh, you expected an intro and information and conclusion and so forth… right.

Recently AutismSpeaks asked on Facebook and Twitter what 5 things that people would tell parents right after their child was diagnosed. Even though there was hundreds of really great answers, I found that you could boil them all down into one fundamental response… “learn”. Every answer involved the parents having to learn one thing or another!

So having boiled it down to one answer, which encompasses them all but is still a little too vague entirely on it’s own, I will broaden it out to answer the original question: what 5 things would you tell a parent right after their child is diagnosed with Autism?

1. Learn what Autism is.

LearnThe scariest part of getting the diagnosis is that most of us really don’t know what Autism actually is at the time and so our minds start racing about all the things that must be wrong with our children and all the ways their future is going to be impacted. We start going through our memory files trying to think of every single thing we’ve ever learned or heard about relating to Autism.

The only way to really conquer a fear of the unknown is to learn about it. Don’t bother yourself with causes and cures, just learn what it is. Talk to your doctors and also hit the information super highway to learn how Autism affects people. As you learn the signs, symptoms and effects it has, you’ll begin to recognize them in your child. It’s the first step to learning how those symptoms are treated.

2. Learn What Services Are Available To You

This has to be your second step because early intervention is the key to helping your child overcome Autism and live a productive life. Unfortunately, not all treatments/therapies are covered for you, not all are free, not all of them work, not all of them available to all people and many, especially the good ones, have a rather long wait list.

The sooner you find the best places to go for help, the sooner you can get in the door to talk to them. It may be months or even years down the road so you have to find these places ASAP.

Also, some places will take you but not until after you’re approved for funding, or some other stipulation and again, applying right away means you get the paperwork done faster.

3. Learn the treatments, therapies, diets, etc. yourself

If you’ve done #1 and #2, you’ll find yourself quickly thrown into terminology hell with abbreviations thrown at you from every direction, including ABA, IBI, GFCF, IEP and on and on. You’ll learn them as you go, don’t stress out over it.

It’s very important to remember to take notes all along the way!

Some of these things will work brilliantly for your child and some will not. The very nature of Autism is that no one solution works for everyone.  So you may need to keep track of the results of each attempt so that you can tell what is and what isn’t working.

More so than that, many therapies are effective but so very limited. That is to say, you may have speech therapy appointments once a week which help a lot, but how much more would it help if it was daily instead of weekly??

Ask for notes and information on how you can continue the work at home. Ask for books or copies of what they work on that week so that you can reinforce the work.

If it’s a nutritionist, ask for a list of essential foods to try for, ask for suggestions on how to get a picky eater to eat the things they have to instead of just what they want to.

Never just expect a professional to do all of the work for you. They are professionals but they can only do so much because it’s not just your child that needs them. However you are not them. You can devote your time to one child far better than they can. But you’ll need the information and tools to do it.

Also, maybe one day you’ll meet another parent along the way that is really struggling and can’t get the same help you did, and you’ll have all that information for them to be able to use if they have to!

4. Learn where the support is.

The one good thing about Autism being everywhere is that there are so many people out there going through similar situations. Someone you are going to deal with will likely have some information on how to get involved with a support group, whether it’s your doctors, therapists, teachers, nutritionists… what ever, keep asking them all if they know of any.

Do not be shy.

Children with Autism are extremely diverse and you’re very likely to find parents that have children that are extremely low functioning, some that are high functioning, some that have had made great progress in getting their children developing and even some poor parents that have had their child regress.

They all have information to share and support to give. And they all have had to start at the same place… scared of the unknown. So don’t feel you don’t belong because you have nothing to share yet. You will, in time.

Also, remember that the Internet is there to help out. It can be daunting at times, all these people from all over the world that you don’t know but they’re real people and will help you just as much as a person face to face can. In fact, you will likely find a much larger support group online since you literally have the whole world at your finger tips. Twitter and Facebook groups/pages are a great place to start but there are also many forums and such to find.

5. Learn to be a super hero

That sounds a little strange but when you think about it, a super hero is compassionate, patient, strong, capable of doing amazing feats… that’s going to be you. In time.

I used to enjoy reading comic books, especially the early stage comic books where the hero has to learn what it takes to be a hero… and I find that it’s very similar to what you’re going to go through.

You’re going to learn to be far more patient than you ever thought you could be. You’re going to learn that all those children you thought were being bad actually weren’t. That they really wanted to be good kids. You’re going to learn that all those “weird” people that seem extremely socially awkward really aren’t that weird after all. You’re going to stand up and make sure that people are treated far better than they have been, when before you might have let it go or just said something without getting too involved.

On top of all that, unlike most parents that are forced to become doctors, psychiatrists, chauffeurs, banks and so forth, you’re also going to have to become a researcher, scientist, psychologist, therapist, nutritionist, supporter, event manager and even more.

It sounds pretty daunting actually, but the good news is that even though it does happen pretty fast, it’s still not over night. You’ll tackle each step as it comes along the way.

But in the end, so long as you never give up and you keep in mind who it is that you’re doing it for… when your child grows up and becomes capable of far more than what people told you they could do way back when they were first diagnosed… you’ll be a super hero.

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Autism has made one thing easier: family listens to us

My wife and I were talking this week-end about how things have changed with our family, both hers and mine. In the beginning, as we found out that we were expecting our first child, we got a lot of the usual “get ready to get no sleep for the next 18 years!” type of remarks, as all expecting parents do.

AdviceThen we faced the ridicule of wanting to keep up with todays standards in safety: “Bah, my kids never had to sit in a car seat and they’re fine!”

We continued to get the “we were parents long before you were” speeches long after our first child (Cameron) was born and even after our second child (Tyler).

Even when we began telling everyone of our Autism concerns, we still got all the ‘advice’ you’d expect, such as “some kids are just like that” or “he’ll grow out of it, stop being a worry wart”. What is a worry wart exactly anyway?

It was very frustrating because every parent wants to set limits, rules and boundaries for their children and we all know that grandparents love to spoil their grandchildren. But all family has this “we are parents too, we can spoil your kids, they’ll be fine” attitude and it can be very frustrating for parents that just want everyone to listen to your wishes.

Autism has a way of changing all of that because suddenly it puts them on the same level playing field as you… the unknown.

We found that all the remarks, all the advice, all the ridicule for our choices faded away in that moment, but never really left because what would parents (who are now grandparents) be if not supportive?

Even still, what really made the largest difference was when we were able to really make them “get it”… and for us, that defining moment was when they watched the Temple Grandin movie, or when they could find their own videos on Autism.

Once educated on just how very different it can be and how well versed they had found out that my wife and I had become on what is going on in the world of Autism, they really backed off.

Not just the remarks and such, but also on questioning our decisions. If we decide something is best for Cameron, or if we decide that he goes to bed at a certain time, or if we decide no one in the family feeds him without us being there… they do not question it anymore. They certainly don’t argue it either.

That is huge.

It has been a long and very frustrating road at times but it’s great knowing that finally, after all this time, they see that we are capable, that we do know what we’re doing and most of all that we not just like every other parent that’s had a kid.

To be clear, we still value input from our families and our own parents, but the fact that the questioning, doing things against our wishes and ‘spoiling’ is over… is so very much appreciated.. I can’t even put it into words.

The big shock, for me, is when other parents started coming to me for advice, which also comes with the Autism diagnosis, but that’s for another article.

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