Forgiving the volcanic emotions

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

volcanoThe 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.


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.


Comments { 5 }

A special request, an Autism Birthday Wish

birthday cupcakeMy birthday is coming up, June 5th, and I wanted to ask a special request of you.

No I don’t want presents or money. I don’t really even want anyone to know that it is my birthday to be honest. I’m quite content with just going about my business.

However, there are a few things that I’d like for you to do for me, if you’d be so inclined. I’ve listed them below and I ask that you do one or more or all of them.

Donate to the charity of your choice

It would mean even more to me if it’s an Autism charity but it’s not necessary. If you have a favourite charity that improves peoples lives, that really helps people and is working hard to make a real difference, please make a donation.

I’m not asking for any specific amount, nor for you to do it in my name. I’m not even giving you a charity or list of charities to choose from. But to just do it because I asked you too.

Volunteer your time

Much like charity, donating your time is a wonderful way to help out and make a difference. It need only be for a few hours, it can be in any place that works to benefit people.

Just set aside some time one day and dedicate a little time to volunteering at a place that will have you. It doesn’t even have to be on June 5th. You can do it one long week-end where you get an extra day off anyhow.

Don’t let the negativity out one time

This is something that I practice as much as I can and it really does make a difference in your own personal life.

What I do is, each day, I catch myself before I say, write, share or even think one negative thing. Whether it’s me thinking that I can’t do something or being upset with someone else for what they said or did… I stop myself, realize what it is that I’m doing and stop myself.

Instead, I think I can do it, I am not here to judge and I don’t have to get into an argument just because someone on the internet was wrong (that one is hard!).

One time, when you feel down on yourself or get mad at someone in the next few days, or each day if you can…. think about me and think about how I asked that you not do it.


I don’t need anything for myself. What I really want is for people to stop fighting, for people to work together and for people to pitch in a few of their off hours or a little money.

You don’t have to tell me you did it and you don’t have to do it in my name. Just do it and feel good about doing it.

That’s what I like to see most.

Comments { 1 }

What to say and not say to a parent that has a child with Autism

I’ve written quite often about how having a child with Autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find that you don’t have the same tolerances when it comes to others or some of the ignorant things they say, whether innocently intended or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry though, I’ll follow it up with some things that I think would actually be nice to say.

do not sayDo not say

  • Your kid just needs proper discipline
  • My kids would never get away with that
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism too?
  • Have you thought about a group home or institution for your child, so that you can go back to having a normal life?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid is defective
  • Your kid will grow out of it, right?
  • Autism? That’s like Rain Man, right?
  • It must be nice to get special funding or special help!
  • I hope my kids don’t end up like yours
  • You need to watch your kids better
  • Maybe you’re just bad parents
  • But all children do that
  • But your kid was so good for me
  • Referring to your child with a nickname such as “rain man” or “stimmer”

Yes, these are actual phrases I’ve heard or have heard second hand (parents told me someone said it to them). Ok, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say

  • You’re doing such a great job
  • I don’t know how you are able to do so much
  • Your child is progressing so well, you must be very proud
  • If I can help, just let me know.
  • I don’t know much about it but I’m willing to learn
  • I’ve read some studies, heard the news but I’d love to hear what you think

I’d love to hear from you. What have you heard or what would you like to hear? I’ll update this post with good suggestions.

Comments { 135 }

Apple packaging, Autism and blogging. Putting it all together.

As I learn more and more about Autism, through the community, educational information and my best instructor, my son… I’ve come to learn what will and won’t overwhelm him before he has the chance to notice it.

A funny thing has happened though, I’ve come to appreciate the simplicity in some things… most notably, Apple’s packaging practices. Not just the box they put their products in but their devices as well. Ipad and Iphone? A big apple logo and one button. The boxes they come in? A picture and a logo. Simple.

When I look at other products, from their rivals Microsoft to cereal boxes, I find so many pictures, colours and information thrown at me that I become overwhelmed myself.

I started thinking to myself, how can I relate this information to my blog?


I have tried a few different designs/themes across several blogs in the last several years, I’ve even had three different designs on this blog alone in the last year. Some were flashy, some were bright…. no matter how much they seemed great looking to me at first, in practice, I’d find that it just didn’t feel right.

I’d use each theme for a while, adding in some posts, playing with some options but it always just felt wrong. And I didn’t know what it was.

As I said, I’ve been learning. And what I’ve learned is that my blog didn’t feel right because it was overwhelming.

It was an Autism blog, that I kept trying to fill with more and more stuff. Animations, pictures, graphics.. fancy stuff!

The truth is, many of us have picked up the practices of our children. We seek out the places and situations that won’t overwhelm our children and in time, we begin to seek that out for ourselves. So when we get to a blog that has too much on it… we get overwhelmed.

Keep it SimpleA nice white site, some black (or almost black) text, a nice clean font, a few splashes of colour as opposed to tons of colour, some separation of information and spaces so they don’t become jumbled… these things make for a great reader experience. They don’t even have to read the first word yet to already feel a sense of ease when they take that first look.


Obviously you don’t want to cut back on information for the sake of making things simpler, but you can help avoid information overload.

When you first start a blog, everything you put on it is important. Categories, blog roll, page list, archives, tag cloud, profile information, and so much more. You fight with yourself trying to sort it all, putting the most important stuff at the top, then re-organizing it, adding more… and so on.

Eventually you end up with a blog that has twitter feeds, facebook badges, social bookmarks at the top and bottom of each post, advertisements, news feeds and other stuff all over the place that not only slows down the site, but your visitors have no idea what is what or where.

The result is that you’ve given them an encyclopedia of information and no index with which to find anything. They load a page, go into information overload and do their best to put blinders on. The only way to find what they’re looking for (your blog post) is to do their best to not look at everything else.

What’s important

You have to realize that the only thing that’s important on your blog is your blog post. If they have trouble finding that, you’re in serious trouble. It should be clear, easy to read and without distractions.

More so than that, try to think of the rest of the items on your blog as tools to compliment your blog posts. Categories, page lists, archives, search box, tag clouds… these things help people to find and sort through your blog posts.

Everything else that you add is extra. That’s not to say that you can’t add them, but keep in mind their purpose. They’re extras. They shouldn’t be bright, flashy, in your face or anything else like that.

Those things will not keep a reader coming back. Your blog posts will.

Don’t go for the brightest, flashiest, most feature rich blog theme you can find and then load up on plugins… you’re only going to overload your reader and you’ll be lucky if they return for a second time… no matter how great the blog post is that attracted them in the first place.

If your blog is an Auism blog, it’s doubly important. Your readers are parents, short on time, eager to learn and share, possibly short on patience and if they’ve been at it a while, possibly easily overhwelmed.


  • Don’t make it hard for us to read your blog.
  • Remember that we are there to read your blog, not your twitter feed or news feed.
  • Keep the packaging simple, don’t try to dazzle us.
  • Keep the information where the information should be, in your blog posts.
Comments { 1 }

“May increase the risk of autism” studies versus real scientific research

Weird Science

Autism is still very much a mystery, I’m fairly certain that we can all agree on that. Some people may think they have it all figured out (anti-vaccine extremists) but for the most part, everyone admits that there is still a lot to learn.

May Increase The Risk of Autism

As such, study after study seems to hit the news wires with the tag line “may increase the risk of autism” and collectively, the entire autism community rolls their eyes.

Some of these studies in the last year include “Living Near a Highway May Contribute to Autism Risk“, “Jaundice in newborns may be linked to autism“, “Sibling spacing may be tied to autism risk“, “Early Prenatal Vitamin Use Prevents Autism” and the list goes on.

You have to understand how these studies come about. Researchers pick a year, or several years, go back through medical records of children born during those years, determine which ones have been diagnosed with Autism and find something that more than 50% of them have in common.

If they find that 55% of children living close to a highway had Autism, then they can release a news story saying that a study was done that determined that living close to a highway increased the risk.

There’s several problems with this.

  1. They aren’t counting the children that have gone undiagnosed.
  2. A lot of information could be out of date or simply incorrect. Historical records in studies make for a huge margin of error.
  3. When you’re looking for a commonality, you can find virtually anything.

Allow me to clarify #3… let’s say that they could find out if a bird was flying over the house at the moment of conception in 51% of Autism cases. This could result in a study stating that birds flying overhead during sex could increase the risk of Autism.

Luckily, there’s no way they could check that but you know what? It’s possible that it did happen.

Does that mean it really increased the risk? No.

Real Scientific Research

Ah, science. You know, that stuff you see on television where they mix chemicals, dissect and examine the insides of animals and people… you know, science.

The most recent real research to be released states: “Gene Expression in the Brain Offers Clues to Autism’s Roots

This study was done on actual children post mortem (after they died), where they actually opened up and investigate actual brain matter of children with and without Autism.  If you don’t wish to read all of it, here’s the summary:

Working with the brain tissue of youngsters after their death, Geschwind and his team found that compared with nonautistic children, those who had the disorder showed a marked drop in gene expression in two areas of the cerebral cortex, where higher-order processing occurs — the frontal lobe, which plays a role in judgment, creativity, emotion and speech, and the temporal lobe, which is involved in hearing, language and the processing of sounds. These areas have been implicated in autism before.

In addition, Geschwind found that healthy brains showed distinct differences in the level of expression of some 500 genes between the frontal and temporal lobes. But this difference in expression was missing in the autistic brains; the features that would normally distinguish the two regions had disappeared, Geschwind said.

This is actual genetic and scientific proof that the brain of children with Autism are different than those without. Furthermore, it goes on to say:

It turns out that even in the womb, the fetal brain begins to show differences in gene expression between the frontal and temporal lobes, suggesting that the developmental abnormality associated with autism may develop then too.

This suggests that jaundice and vaccines and other “after birth” factors likely have no effect. It does not have much of an effect on other studies that base their focus on the mother during her pregnancy.

Even still, it does show that it is a genetic disorder that is not just something that you can force out of them through discipline or shock therapy.

Some other notable scientific research includes “Early Brain Overgrowth Linked to Autism” and “Researchers Reveal 18 Novel Subtype-Dependent Genetic Variants for Autism Spectrum Disorders“.

Again, looking at real subjects instead of just comparing old data, looking for commonalities.

What do we believe?

I’m not saying that we have to ignore the studies base on researching data and basing conclusions on those findings… those studies have real value and they’re done for a reason. However, as we in the Autism community can see, they seem to be grasping at straws.

It’s a shot in the dark approach at playing with odds in a crap shoot who’s results may or may not be accurate. “May increase” means it might not, and “increase risk” means that there’s still a 0% to 100% chance. That means there are lots of people who’s children have Autism that go against what the conclusion of the study states.

Not very comforting.

However, people that know nothing about Autism nor how these studies are done will read them and base their future pregnancies on that information. They’ll move, they’ll take their vitamins, they’ll make sure not to have a child within a year of the previous one… and their child might still have Autism.

They’ll wonder what they did wrong. As if it was their fault.

I share these studies and stories on Twitter, Facebook and here on this blog because, as I said, it’s valuable information. You and I need to know about them just in case someone asks us “hey, I read on CNN, do you think your child has Autism because you lived close to a highway?” and you’ll need to have an answer because your answer might affect their future decisions, and their future information sharing with others.

Keep in mind though, that maybe some of these studies are right. Maybe the data actually does add up and it does make it more likely that your child will have Autism. Unfortunately, there’s just no real way to know which are wrong and which are right. Just because you and I beat the odds, it doesn’t mean that it didn’t make it more likely. Even though I compare statistical analysis to “real science”, it is real science too.

Until they have definitive proof one way or another, we have to keep an open mind and inform others to keep an open mind. “May increase risk of” is a very very vague statement that is very scary to a lot of people even though it really means not much at all.

Don’t avoid them, don’t avoid the questions and don’t get frustrated with them either. Read them to know them and answer the questions honestly.

Comments { 6 }