Tag Archives | parents

Explaining Autism

By on January 6, 2012 in Autism, Autism Awareness, General

I realised something today about autism. I realised that despite spending the best part of a year immersing myself in all things autism, reading every book, blog and website about the subject possible,and despite living with a four-year old autistic boy, I still really struggle to answer the simple question, ‘what is autism?’

I’ve mostly been asked this question by relatives, but variations of it crop up from all sorts of places. I’ve even been asked at work, and I work in a school. I usually begin by telling them it is a disability and a condition that affects the brain. After that, I start to struggle.

It’s not that I don’t understand autism. Since my son’s diagnosis last March I’ve come a long way in learning about it both first hand and through educating myself. My son is four year’s old and in his first year at (mainstream) school. Our story is probably very typical: at around two and a half we grew concerned about speech, communication and general behaviour. The usual struggle for diagnosis, support, and educational provision followed.  In the process I came to learn about educational statements, speech and language therapy, disability living allowance, Specialist early year’s services, Sunderland tests, social stories and countless other things. I’ve read the books and I’ve been there at every step of my autistic child’s development. It’s all well documented in my blog which you can read here.

So my difficultly in explaining autism does not stem from a lack of understanding, ignorance or, I hope, problems in expressing myself. The truth of the matter is this: how can you possibly explain autism to a person in a way that will help them understand? That will truly help them to understand the condition. How can you possibly find the right words that will help them realise what autism is like for your child and for your family?

Asking or expecting someone to understand, to really understand, is unrealistic. That’s why it is so difficult to explain what autism is. I could tell them about the triad of impairments, about the lack of theory of mind and the sensory processing difficulties. I could reel off a whole load of information about the condition. But I doubt it would really tell them anything about my son. A wiser person than me wrote, “If you know one child with autism, you know one child with autism.” The condition is so varied, affects people in such different ways, that finding an adequate, all-encompassing explanation is, I think, impossible. How could a simple explanation ever help someone understand the roller coaster ride that is life with autism (both for the child and their family)? The only way to really understand autism, and the effects it has, is by living with autism.

It is the families who live with autism themselves who know what life is really like. I am lucky in that I have a great deal of support from my family and those around me. But they don’t understand. Sympathy is not the same as empathy. For us, the best support has come from reaching out to those in a similar situation, whether it be through support groups, social networking, or blogs. That is why blogs such as this one by Stuart Duncan are so important, and it’s why I blog too.

I’d like to thank Stuart and the other contributors to this blog. By writing about the condition from the ‘inside’, you are reaching out to those in a similar situation. I expect that many people out there have no one who they can really explain autism to. This blog helps them realise they are not alone.

B’s Dad

Life With an Autistic Son

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Why don’t you celebrate New Years Eve?

By on December 29, 2011 in Autism, Autism Holidays

I get this question a lot, because it seems very much out of the ordinary to not be up at midnight, getting drunk and kissing someone at the stroke of midnight. To not do it is… blasphemy!

The answer is really quite simple.

happy new yearI wake up at 5am many mornings, sometimes earlier, sometimes I wake up often through the night. I have 2 children that require a lot of my time and energy even when I work 8 – 10 hours a day. By the time it’s 9pm and my boys are asleep, I’m ready to go to bed myself but I can’t because there is still more work or chores around the house that need doing.

So I get to bed around 11pm and again, sleep 6 hours or less if I’m up often due to the boys… and do it all again. And I do this 356 days a year.

So already the answer is forming…. but there’s more.

My oldest boy, Cameron, has Autism. That means that we can’t just hire any teeny bopper with a need for some cell phone minute money to come in and take care of my children.

In fact, even most responsible adults are not really ready to take on that task. Only those that know him well. And those people tend to have full lives of their own already so are not readily available.

Take a special day like New Years Eve and.. well, those older, responsible, living life people are already doing something on New Years Even that doesn’t involve being stuck in my living room while some kids that are not theirs are sleeping.

So no… we don’t go out and celebrate New Years Eve. In fact, we don’t even stay up until midnight.

Because when you add it all up, when you really stop to think about it… the needs of your children, the happiness you get from their achievements, the importance of you being there for them when they need you… all of what entails being a parent…  Dec 31st becomes just another night.

You’ll still be ready for bed at 9pm that night.  The kids will still wake up early the next day.

Besides, it’s not that I don’t “celebrate” it… it’s just that I don’t do what everyone else thinks I’m supposed to do. I give my wife a hug and kiss. We say “Happy New Year” to each other and to others as well.

It’s just different and believe me, different is one thing that we’ve become quite comfortable with around here.

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No one knows your child better than you do, not even Santa!

By on December 27, 2011 in Autism, Autism Holidays

Usually in the world of Autism, this refers to teachers, therapists and doctors but the truth is, it can apply to anyone… this year, it was even proven to be true of Santa!

nintendo 3dsPeer Pressure

So back in July, Cameron told us that he wanted a Nintendo 3DS, and reminded us of that fact every week for the next several weeks. He even knew which games he wanted.

Then in October, Cameron’s friends at school got him hooked on Bey Blades… a spinning top kind of battle game. He loves them. His requests for the 3DS died down… he still wanted one, but he didn’t talk about it anymore.

Here’s the thing though… what he wanted and what he wanted due to peer pressure (his friends wanting)… are two different things.

Video Games

If you’ve followed my blog, you know that Cameron is a video game boy, through and through. He loves his video games more than anything and they love him too. He’s developed some great motor skills, reflexes, problem solving skills and more.. all due to his video games.

To give you an example, Tyler (his little brother) got the new Sonic Generations video game on December 4th (for his birthday)… so Cameron got to play but played it in much more limited portions than normal. Since it wasn’t his game, he didn’t get much play time at all. Maybe an hour a day, some days no playing at all.

And yet, he finished that game less than 2 weeks later. Less than 14 days and he had beat the boss and won the game. That’s pretty good for anybody, much less a six year old with Autism.

Anyway, back to the 3DS… my wife and I decided to get him the 3DS from us, since it’s what we know he really wants and we left the Bey Blades to Santa… who was very generous. He got 7 of them in total and a stadium to have them battle in!

And the winner is…

Christmas morning came and went, wrapping paper everywhere and more boxes than our recycling bin can handle… and 2 days later, he’s just now starting to open his Bey Blade packages to try them.

What has he been doing all this time? Playing with his Nintendo 3DS!

Truth be told, the only real reason that he even played with his Bey Blades this morning is because we don’t let him play video games in the morning.

Things will change though, once he goes back to school and his friends are playing with their Bey Blades… and he can’t take his video games with him.

But still, the lesson is… no matter what his friends have, no matter what he changes his mind to… we know him better than that.

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Please be careful what you take away from the news or other media sources

By on November 23, 2011 in Autism

Recently, a study was rehashed (it’s been done before) stating that intelligent people that have babies are more likely to have children with Autism than other parents.

This irks me for many reasons, which I will get into in a bit but there’s a bigger problem and that’s the spin that the media puts on stories like this.

Here are just a few of the headlines around the internet all reporting the exact same study:

  • Couple who meet at work have autistic babies?
  • Rise in autism ‘may be linked to clever parents’
  • Autism: The Result of Math Whiz X 2?
  • Intelligent Parents Have Higher Risk of Having an Autistic Child
  • Couples in Science Field at Risk of Having Autistic Children
  • Is the changing role of women in our society behind the rise in autism in the past 30 years?

Do you see the differences?

Where to begin?

First of all, let’s go back to Wired Magazine, circa 2001: http://www.wired.com/wired/archive/9.12/aspergers.html

That’s right… 10 years ago.

That means that if this truly is a new study, it’s a study that people have now spent money on twice to come up with the same result. That’s not really a bad thing as it may reinforce the findings, meaning it’s more likely true. The problem is that neither of these studies dig deep enough to come up with real answers.

Being smart is pretty vague. Which is where the assortment of headlines come from… is it math? Science? Both working at the same place? What if only one of the parents is smart? What if the parents are super smart??

Women’s Lib?

For those of you who had to read the last headline twice to believe it really said what it said… the article itself doesn’t get any better.

Here is a paragraph from that article:

Until relatively recently in our history, being exceptionally bright was not much use to you if you were female. In Victorian Britain, for example, the opportunities for a woman to earn her living through brainpower alone were extremely limited.

Essentially, this news source revisits the old “refrigerator mom” theory of Autism, where it was believed that mothers that were cold towards their children somehow caused it in them. Only, in this case, it’s the evolution of women becoming smart (because they weren’t smart before?!?!) is the cause.

If only women had stayed in the kitchen and cooked and cleaned… we wouldn’t have this rise in Autism diagnosis rates. Right?

This particular news story puts a lot of unnecessary blame on moms.

Check your sources

If it’s not obvious enough yet that news sources spin stories as they see fit, then I’d suggest you stop reading the news.

Again, all of these headlines come from the same original source… a study that says that Autism diagnosis rates are higher than average when both parents are in “higher intelligence” jobs such as technology, medical, science or engineering.

It does not say anything about working together, how they’d meet, which field in particular they’d work in and most certainly doesn’t put any of the blame on women for being smart.

In fact, out of the (currently) 25 news sources I’ve found on this, there is only 1 that has put this particular women’s lib spin on it. The rest talk about both parents.

The results trickle down differently depending on which news source you read… when really, everyone should be forming opinions on the story, not the spin.

Take the Women’s Views on News for example. They only read the one news source… can you guess which news source they read?

You can read their story on this here: http://www.womensviewsonnews.org/2011/11/professor-says-womens-changing-roles-to-blame-for-rise-in-autism/

Yup, they found the one that attacks women’s lib, putting the blame for Autism on women in the work force. As a result, there’s a lot of very unhappy women with the professor that came up with the theories behind the study. He didn’t even perform the study! And he certainly didn’t say anything about moms in the work force.

So a guy has a theory, a university conducts a study, the results are vague, a crappy news source puts a wild spin on it and a whole bunch of women all hate the guy that came up with the original theory.

See how that works?

The problems with this study in general

Ok, now that I have the big elephant in the room covered, let’s talk about the study itself.

Here is the way I see it.

1. Every single news source put some kind of a spin on the study in an attempt to get the most readers but not one of them explored the possibility of the parents having undiagnosed Autism themselves… or at least, somewhere in their family history.
Think about it… they’re smart, they work in the smart places (like Silicon Valley) and they get together and have children… wouldn’t it make sense that people with a history of Autism be more likely to have autistic children? If they’re truly that smart and being smart causes Autism… why couldn’t one assume that the parents might be somewhere on the spectrum?

2.  The only things that being smart has ever produced is a lack of sex life in college and a higher paying job after college. To think that two smart brains producing a baby would cause it to have genetic anomalies that produces Autism in a child is just… well, it’s a pretty big stretch of the imagination. At least, it is without the addition of some other factor, such as what I said in #1.

3. Give me 30 mins and I’ll give you 50 different studies that all have found “the cause” or at the very least, the thing that “increases the risk” of Autism. If I believed every single new study that came out, well… I’d just have to conclude that being alive causes Autism because at this point, just when I think they’ve covered everything… a new study comes out within the next week.

4. As I’ve said over and over… “smart people” is far too vague. How smart? Just clever? Did they have smart parents? Were they the first smart people in their family? What if they’re smart but don’t work in smart places? How do you explain the children with Autism for couples that don’t attend college and have no jobs?
There’s just too many holes to fill.

It’s the News job to interpret, not reproduce

The news agencies take a story and rewrite it and put it out in a way that you’ll understand and will get the most readers. It’s not their job to take a story, copy it and print it. So you’ll never get what the study actually said.

The more vague a study is, the larger the spin that can be placed on it.

When you find a new study in the news, go to http://news.google.com and look up other news sources that cover the same story, or go find the study yourself and check it out. Because reading from just one news source can be dangerous sometimes.

news spin

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When apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

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