Archive | General RSS feed for this section

Dear researchers, being pregnant is linked to autism. You’re welcome.

By on May 24, 2012 in General

Dear researchers,

I am writing to you to ask you to please stop.

autism moms causesStop trying to find a way to blame mothers. Stop reaching for any and every single thing you can think of to link to a cause of autism.

Stop scaring people. Stop making people think that they have to move, lose weight, have kids early, wait for a second child and any number of other things that you’re scaring people to death with.

Stop making moms think that having a fever will cause autism but taking Tylenol for a fever will cause autism too. Stop making moms think that they have to space out their pregnancies but they also can’t be too old.

Just stop!

I understand you’re just trying to find the truth. I understand that you’re just trying to get more information.

However, this is getting beyond ridiculous.

I have put together this small list of the most recent studies just to give you some small idea of just how out of hand this is becoming.

Ways to blame moms for autism

Closely spaced births:
http://www.ncbi.nlm.nih.gov/pubmed/21220394?dopt=Abstract

Premature birth:
http://www.news-medical.net/news/20111018/Premature-infants-more-likely-to-develop-autism.aspx

Prenatal “complications”:
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.1990.tb00820.x/abstract

Not using prenatal vitamins:
http://medicalxpress.com/news/2011-05-early-prenatal-vitamins-autism.html

Living close to a freeway:
http://articles.latimes.com/2010/dec/16/health/la-he-autism-20101217

Being overweight:
http://online.wsj.com/article/SB10001424052702304072004577328203742847094.html

Smoking:
http://www.opposingviews.com/i/health/addiction/autism-linked-moms-who-smoke

Having a fever:
http://www.latimes.com/health/boostershots/la-heb-fevers-pregnancy-autism-20120523,0,6934232.story

Being pregnant linked to autism

At this point, can we all just agree that being pregnant is a link to autism? Giving birth is a link to autism. Being alive is a link to autism.

No, they’re not the causes but they are linked! Breathing is linked to autism. Opening your eyes is linked to autism. A heart beat is linked to autism.

The refrigerator mom theory is dead and in the past. Can you please just leave it in the past?

Enough is enough.

Stop pointing fingers.

Now you know that being born is a link to autism, you can start putting your time, energy and money into doing something that is actually helpful.

You’re welcome.

Comments { 14 }

Understanding and acceptance means listening, even if you disagree

By on May 7, 2012 in Autism, General

Understanding
Adjective: Sympathetically aware of other people’s feelings; tolerant and forgiving: “people expect us to be understanding”.

I started the Facebook fan page called “Autism Understanding and Acceptance” a while ago with the goal of moving beyond awareness. What this means is that, rather than just simply knowing that autism exists, we must begin to do one simple, but very difficult thing… listen.

We must listen to autistics, parents of autistics, “experts” and even those that we might not want to listen to… the bullies, the disbelievers, the critics… the haters.

And this is quite contrary to what we’ve always been told and have always believed. We’re supposed to ignore the haters. Ignore the ones who’s only goal is to make you angry.

I hope to explain why, at least in my opinion, it’s important to listen.

understandingThe misconception of what it is to understand

First of all, there seems to be this big misconception among some people that tend to believe that “understanding” is something that applies to others who believe the same thing that they do.

The thing that makes “understanding” so difficult is that it requires us to be willing to listen and understand the position of someone that we do not agree with.

We don’t have to agree with them, just listen. Perhaps, through civility, there can emerge a mutual understanding of how each person has come to believe what they believe… even if, in the end, they still do not agree with each other.

For example, this whole post… I am trying to explain how I’ve come to believe that it’s important to listen to the critics and haters while you (the reader) may think that they should be ignored. When you finish reading this post, you may still not agree with me. But you may understand why I think the way I think.

In fact, I could argue that, to be truly understanding, one should seek out people that they disagree with, if only to listen to them.

It is not your job to change their mind. Nor is it really your job to listen. But it is best to recognize that they are two entirely different things. You can listen without having to convince them how wrong they are.

Understanding isn’t something that happens when two people agree. It’s the ability to comprehend why a person feels the way they do.

The uncomfortable position it puts you in

I won’t lie to you, you’ll get stuck in the middle of some sticky situations… and I’d like to give you my fan page as an example, particularly how it relates to the autism community.

When it pertains to autism, “understanding and acceptance” is often considered to be the opposite of “cure”…  there are those who want to cure themselves or their children of autism and then there are those who want for society to have more understanding and acceptance of themselves or their children.

This is such a small part of what it truly is to be understanding. It’s so much more than that.

It’s about understanding why a person might want a cure. What they’ve been through.

It’s about understanding why some people dislike autism, or any disorder or disease or their hair colour or how tall they are or their dripping kitchen faucet. Anything and everything.

It’s about remembering… people are allowed to dislike something every bit as much as they are allowed to like it.

“Understanding” is not a thing that is to be thrust on someone that dislikes something until they learn to like it.

This means that, on my Facebook page, when I post something by someone who feels sad, angry, betrayed…. just… dark… it is I that comes under attack for it. Not the person that wrote it.

It also means that when I post something triumphant, positive, happy…  it is I that comes under attack for it. Not the person that wrote it.

Why? Because people have perceived notions of what “understanding” is and feel that I should share those notions. That by being “understanding” of their feelings… I should also have those same feelings… and only share things on the page which coincide with those feelings.

It puts me in the middle. And unless I share items with people that they are personally comfortable with, they will see me as not being understanding….  for they would not have shared it… because they do not understand it.

But no one single feeling will pertain to everyone. Which means there will always be someone that does not “understand” it.

I can’t win.

Acceptance for the win

Perhaps I can win though… not in a victory, holding up the trophy sense of the word… but by persevering.

You see, understanding and acceptance is not the opposite of wanting a cure for autism.

It’s listening. That’s all.

To those that we do not agree with and those that we do. To those who want a cure and those that don’t. To those that are full of hate as well as those that are full of love. Even to those that will never understand and accept us.

They are people, with valid opinions, feelings… lives.

And it’s true, they might be wrong. We tell ourselves there’s no reason to listen to someone that is wrong.

But how can we ever show them what is right if we can not take the time to understand why they are wrong or how they came to be wrong?

How can we ever hope for them to listen to us if we can not take the time to listen to them?

Besides, right and wrong is such an abstract concept much of the time anyway. Differences, sometimes, are simply that. Differences. No right or wrong.

Understanding the “how” and “why” is the only way to understand the “who”… it’s the only way to move forward towards acceptance.

If acceptance is all you ask of others, then you have to be willing to do the same. Of all others. Not just those you feel comfortable with. Not just those that share your feelings.

Take the time to understand those that you disagree with completely… before you ask someone else to do the same.

Autism Understanding and Acceptance

Autism is not a superpower. Autism is not a curse.

It’s a spectrum of different stories ranging from one end to the other and only those who take the time to listen will be able to truly understand it.

It’s people. Autistic or not. Happy or not. Angry or not. They’re all people.

And they might not understand us. They might not agree with us. They might not accept us.

That doesn’t mean that we can’t take the time to understand them. All we have to do is listen.

That’s what understanding and acceptance is.

Perhaps you disagree. And that’s ok. At least now you understand what it is to me.

Comments { 5 }

Misrepresentation within the Autism Community

By on January 14, 2012 in Autism, General

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.

Misrepresentation

John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

Comments { 7 }

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

Comments { 2 }

Sometimes Autism makes things easier

By on November 18, 2011 in General

Most of the time, Autism makes things much more difficult… even the most simple of tasks. But sometimes, in some interesting ways, it actually makes some things easier.

Routine

All children need some sort of routine… even if that routine is a complete lack of routine. Wait, does that make sense? Anyway, when things are predictable, children feel the most safe and at ease.

This is ever more so important with autistics. Think of it as… obsessive compulsive disorder with a photographic memory. Now, obviously, not everyone is to that extreme but it should give you a good idea of what some people have to deal with.

If your child can memorize the placement of 1500 items around your house and NEEDS them to be in the exact same place at all times… you may as well invest in super glue because those things are not allowed to move.

So how is this a good thing? Well, think about it… your child kind of forces structure into your life, whether you’ve had it or not. You will always know when supper time is, bath time, bed time… you’ll always know which movie(s) or book(s) you’ll have to choose from… you’ll always know where you need to be and when.

Ok, imagine this.. you have one child with Autism and one without. Nap time is at 2pm each day. At 2pm every single day, your autistic child runs off to their bedroom and gets mad if you’re not there to turn off the light. Your other child? (S)He’s in the living room screaming and crying because they don’t want to have a nap today.

See the difference?

Same goes for bath time, bed time… you name it.

When the clocks were changed for Day Light Savings time one year, my son had a meltdown because we tried to keep him up a little bit later to adjust him to that extra hour. He was mad because he wasn’t going to bed when his internal clock told him it was time to do so.

My other boy? He has a tantrum when it’s time to go to bed… at bed time!

School

Dropping off my autistic son at school, in the beginning, was easy. You take him in, he sits down, picks up a book or a puzzle or a toy and you walk out. He did what he needed and at the end of the day, he went home. He’d have the occassional meltdown, not listen or what ever… but the fact that there were other people, that we weren’t there.. that life was just happening around him, didn’t seem to matter a whole lot. (this is aside from the break in routine, as discussed above. He did not like the routine change, but I’m talking about how it was once school became a routine… anyway, I digress)

My other son, on the other hand, was super excited about school because his older brother went there every day. It was a magical land filled with friends and games and stuff to do and you got smarter doing it. However, when you’re 3 and your parents abandon you at the door and there’s strange people all around you… that perception of the place quickly changes.

I’m writing this mid way through November and my son still cries when we leave him at school… he started at the beginning of September. It’s not a routine for him yet. It’s not feeling safe for him yet. He has a lot of emotions going on and a lot of needs and, while is doing very well at school because he listens and does his work, it’s a bit heart breaking to hear him bawling his eyes out as I walk back to the car (don’t look back, don’t look back, don’t look back!)

Presents

My son with Autism told us what he wanted for Christmas in July. JULY! While that may not be all that surprising in itself, what is a bit of a shock is that it has remained and still is the same wish. See, most children want what other children have or what they see on the television or what they hear is the next cool thing to have… my son figures out what he wants and that’s it. There are no other options. In fact, you can’t even ask him for other options (“What else do you want besides that?”) because there is nothing else. He spends a great deal of time thinking about it, but comes back with no answer. He wants what he wants.

By the way, heaven help us if we don’t get that for him! Yeesh!

My other son…  put it this way, when family members phone me and ask what to get for him, I say “I have no idea.” It’s not that I don’t know him, I do…. it’s just that his tastes change, his desires change and, this is totally just my boy, but he has no specific want.

When I ask him, he tends to say something that he knows his big brother wants… why? Because there is nothing specifically on his mind.

What I expected is that his mind would change from product to product as he sees them on television or passes them in the store, and to an extent that does happen, but once all that is removed and we’re sitting around the dinner table, he has no Christmas wish list in mind.

One, I know what to buy for… the other? Haven’t a clue!

enjoy the little thingsConclusion

That’s only 3 examples but this is getting long already so I’ll end with this… Autism truly is a disorder and as such, can cause much disorder. In your life, in your family… it’s a struggle and no one can argue with that.

But there are positives. There are some ways in which you can appreciate the good differences. Not just the savants, not just the lessons of life in being more appreciative and patient and loving… but also in just realizing that it’s not all doom and gloom.

Take the positives, no matter how minor or insignificant or trivial they may seem… and smile.

I’m not asking you celebrate with me as my son doesn’t care if I leave him with strange people or not… but smile. Because it’s different.

Comments { 6 }