Archive | July, 2011

Dear researchers: please stop

By on July 7, 2011 in Autism, Research

I used to argue that all research was good research, that information is simply good to have no matter what it is. But at this point, I have to revisit that position and question it.

If your research concludes with….

Listen, I won’t argue that you’re more than qualified, you get paid very well and I respect what it is you do and what you’re trying to do… I understand you have the best of intentions, but here’s the thing:

If your research involves the phrase “may increase the risk of Autism” or anything similar… I ask that you please just don’t even tell anyone. Keep it to yourself.

In fact, if you know, going in, that your findings won’t result in 100% of all cases… don’t even bother doing the research. You know full well that a study on how close parents are to a highway when they have a child will not result in 100% of all close proximity cases having Autism so just don’t even bother doing it.

What the results mean to us

statisticsIn the beginning, these studies were very intriguing and really got people thinking. People wanted answers, we were starting to get answers. But what are the answers, really?

“May increase the risk” simply means that instead of 0.1% to 99.9%… now it’s 0.2% to 99.9%.

As far as we know, there’s always a risk of your child having Autism. So it’s not 0%. And we don’t know what causes it so we can’t do anything in particular to ensure it happens (not that anyone would want to).

So ultimately, all you’re really telling us is that doing something to increase the risk actually has very little bearing on whether or not our child with have Autism at all. Because for every study that says the risks go up, I can show you dozens… hundreds of parents that contradict that study and yet their child still has Autism. Or even better, parents that fit the study to a T and yet their child does not have Autism.

Will we ever move on beyond the Refrigerator Mom theory?

Granted, no one thinks Autism is caused by an uncaring mother anymore but it would seem that we certainly haven’t moved on from blaming the mother.

Recent articles include taking antidepressants, not taking prenatal vitamins, environment they live in (twin study) and older studies along the same lines include jaundice, c-section and other birth stresses, living near a freeway… and the list goes on and on and on…. and on.

If you read those articles and others, another catch phrase they use often is “new insight into autism” and yet.. a month later, a new study is released with that same catch phrase and the old one is all but forgotten.

What all of these catch phrases and conclusions really tell us is “it’s the parents fault, they did something that caused it, let’s find out what it MIGHT HAVE BEEN”.

What we’d like to hear

First of all, no one is opposed to finding out that some environmental factor or other possibility is the reason for our children having Autism. We just don’t want to know what it MIGHT BE. We just don’t want to hear about an increased risk anymore unless you are absolutely certain.

Tell us what caused an increase in 100% of the children. Heck, we’d even be ok with 75% or more… because then we’d know what to avoid for sure.

But “an increased risk” really only tells us that you blame us, will keep finding ways to blame us even though you’re not entirely sure why or how.

It’s now out of hand

These studies were intriguing at first, but now they’re just out of hand. It seems we get a new study per month that says they found something that increases the risk of Autism.

But new parents don’t read the ones before right now. They only read these stories as they become pertinent to their world… which is right now, when they’re about to become parents for the first time.

If they had the back story, if they had read the dozens of studies leading up to the one that will be released next month, perhaps they’d know just how out of hand it has all become. But they won’t read those previous stories… they’ll read the next one and believe it. And they’ll be scared.

They’ll take their prenatal vitamins, they’ll sell their house and move away from the freeway, they’ll avoid vaccines, they’ll risk their baby’s life avoiding a c-section and they’ll do it all out of complete and total fear from what they read in a recent study and for what?

The sad thing is, they could do all that and still end up with a child that has Autism. And then what? Do they wonder what they did wrong? Do they blame themselves since that’s what the studies have taught them to do? Or do they accept that despite all the risks they avoided… it was just meant to be.

Your studies mean very little to me any more. I find them to be a waste of money, a burden on the system, a way of blaming parents further, a media circus and a panic storm for new parents.

Crunch your numbers if you have to, talk to other people that did the same thing, compare those numbers, find others that did the same… and so on. Keep doing it until you have some actual answers for us. Until then, stop running to the media every time you have a chance to get your name in the paper.

 

Other similar stories:
Autism shouldn’t be about playing the blame game
“Wombs of Doom” or “How I Stopped Worrying and Learned to Love Poisoning My Children with SSRIs”
“May increase the risk of autism” studies versus real scientific research

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If my child was a flower

By on July 6, 2011 in Autism

glowing flowerIf my child was a flower… would he realize that he was different from the other flowers?

Would he know that he looked the same and yet didn’t fit in with the rest? Would he know that his scent was a little different from the others, that he was a little less vibrant, a little less tall and sturdy?

Would he know that even though he’s mostly the same that he’s different enough for some people to think he’s a weed?

If my child was a flower… would he wish that he could be in a flower pot by himself? Would he wish that he the other flowers didn’t seem so foreign to him?

Would he question the soil in which he lives? Would he question whether or not his water is different? Would he blame the sun?

If my child was a flower… would he hate being stuck where he is? Mixed in among the rest of the flowers, invisible yet obviously different.

Would he know that he’ll be the last one picked? Would he know that most of the other flowers don’t want him there?

Would he care?

If my child was a flower… he’d be the only flower in the group with a hidden element, a special property… the one compound that could be harvested and made into a healing agent. He’d be the only flower in the group that could help the blind to see, help the unloved to feel loved… to help the lost be found.

Will he ever be given the opportunity? Will someone love him enough to discover what is hidden deep within him?

If my child was a flower… he would be a very special flower indeed.

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The world of Autism consists of wait lists…

By on July 5, 2011 in Autism

I recently asked the hospital here in my city how long the wait list is to get an assessment for Autism. Here’s what I discovered:

First, you have to wait until your child is two years of age… this is so that there is adequate development to demonstrate the repetitive obsessions, lack of eye contact, milestones missed and so forth to base an accurate diagnosis on.

Then you ask your doctor for a referral to the doctor/place that will make the assessment… this takes time. In our case, it was a couple of months before we received the phone call.

Finally, that doctor/place will give you a date to bring in your child… where we were when we had Cameron, it was 6 months. Here, in the city in which I live now, it’s 1 full year.

The first wait list is the worst

Wait ListThis is simply unacceptable for multiple reasons.

  1. Early intervention is paramount. You ask for a referral at 2 yrs old, you wait 1 year.. child is 3 before you even start. For the best results, it’s proven that children learn what will dictate the course of their life before the age of 5. That means that 3 out of 5 years are lost. You have just 2 years now to cram in as much therapy and treatments as possible before they’re out of that stage and worse.. off to school.
  2. The end of a long assessment wait list is only the beginning of more long wait lists for treatments and therapies. If you think 3 out of 5 years is all that you lose, you’d be wrong. When we had Cameron diagnosed, we were told that it was a 3 year wait list for ABA/IBI. That would have made him 5.5 years old before he even started therapy. Far too late!
  3. A long wait list means that there are that many children ahead of you and so few doctors to see them. We have all heard the numbers, 1 in 110… 1 in 70 for boys… the numbers out of the Korea study are much higher. The problem is that we don’t have the same ratios for doctors. So few doctors are capable of making a proper diagnosis, they’re in high demand. There’s one in the city in which we live. Obviously, he’s out numbered and having to fill his calendar over a year in advance.
  4. A long wait list makes it impossible for a second opinion. Some children are misdiagnosed. Many disorders/ailments are similar. With so many children being diagnosed with ADHD, Autism, PDD-NOS, Aspergers, Sensory Processing Disorder…. well, let’s just say, the list could go on and on and on… even doctors can get the signals mixed up. Some children may exhibit several symptoms of one disorder while sitting in front of the doctor and not other symptoms… prompting the doctor to make a diagnosis… a wrong diagnosis.
    Even doctors suggest getting a second or third opinion if possible, to avoid mistakes. But you know what? That’s just not possible most of the time and it’s certainly not possible when you miss out on most of your child’s childhood just waiting.

More wait lists?

They don’t end there… you keep going from wait list to wait list. You wait for the school board to tell you if you’ll get into a special class, special school, get an aide, hear about your IEP meetings… you get onto wait lists for the bus system to get to that school. You get onto the wait list for camps, swimming lessons… the list goes on and on and you’ll be waiting on most of them.

It’s maddening and in reality, most of the time, it’s quite unacceptable.

A child’s future should not lie on a foundation of waiting around.

Waiting for the future?

Don’t wait, take action. In the day and age of social media, find politicians on Twitter and ask them for help. Find medical professionals and ask them for help. Donate to local charities and ask them for help.

Don’t like your doctors in your town? Find other ones. Research online, make phone calls. There are other places that will get the job done more quickly but it may mean some road trips.

You might not make any changes for yourself, you may be stuck. But don’t just wait. Fight. The next parent behind you will need you to fight.

Fighting for it now might not help me right now, but it might help some parent in the future who has yet to encounter their first wait list. And if I’ve stood up high enough, spoke out loud enough, maybe their wait list will be a little bit shorter than mine.

And maybe, if that person fights too… maybe one day our children won’t have to wait until they’re 5 to get what they need at 2.

How long did you have to wait? What wait lists have you found yourself on?

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One Reason Why Parents Do What They Do

By on July 5, 2011 in Autism, Parenting

In my previous post I left off with a question pertaining to YOUR nonproductive responses towards your child’s challenging behaviors that leave you asking yourself, “Why in the world do I keep doing that?”  Good question and it’s one that I’ve asked myself on more than one occassion.

Answer:  because according to the Choice Law you make the choices that you do because at some level (conscious or unconscious) the results work for you; there’s a payoff.  Caution:  be aware that you may have some blind spots to the impact of your payoff system (I did!).

You would think that rational, normal-thinking adults would not repeat behaviors that leave them feeling guilty, frustrated, and upset with themselves!  However, if you’re like me I’ll bet that you could come up with a list of personal examples where you’ve done this:

  • You eat when you know that you shouldn’t.
  • You smoke when you really don’t want to smoke.
  • You give in to demands when you know you should stand your ground.
  • You lose your temper when it’s the last thing you wanted to do.

Let me repeat this:  the Choice Law says that we choose our behaviors because we perceive (consciously or unconsciously) that they will serve a purpose…generate some level of value for us…no matter how illogical this sounds.  I’ll bet that you have life-examples, perhaps the ones I listed above, that cause you to know that what I’m saying is true.

So how can you use this information to continue to strive to strengthen your relationships with your child rather than cause possible long-term damage to your relationship?  Well, I’m not a psychologist so all that I can tell you is what has worked for me:

  1. Write out a list of the three most nonproductive responses towards your child that you tend to repeat.  Be specific about what you do and/or say.
  2. Write down one to two sentences explaining why you find this nonproductive pattern negative.
  3. For each of the nonproductive responses listed above write down the perceived outcome or payoff that is maintaining the nonproductive response(s).  This will be the hard part and might require a trusted friend to help you.
  4. Once you find your payoff for your nonproductive responses toward your care-receiver you need to establish a course of action for positive change.  Here’s a cheatsheet for 29 ways to positive change:  http://zenhabits.net/the-habit-change-cheatsheet-29-ways-to-successfully-ingrain-a-behavior/

The bottom line:  at some level, our negative responses towards our children’s challenging behaviors are often shaped by the outcomes we think OUR behaviors will produce.  People have a tendency to do what they perceive will work.  Finding your payoff and plotting a course of personal change will help you to regain personal control and positively strengthen the relationship between you and your child on the spectrum!

As you know, sometimes the journey to self-discovery is not easy, in fact, it can be downright difficult.  But it’s worth it because in the end you can look yourself in the mirror and know that you’ve done everything possible to be the best parent that you’ve been called to be.

Michael Woods (Founder of Relational Crisis Prevention)

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One Reason Why Children Do What They Do

By on July 4, 2011 in Autism, Parenting

Let’s be honest.  The truth is that sometimes we are totally baffled as to why our child with autism does the things s/he does!  If you’re the type of parent who’s open to new concepts, and I’ll bet you are, then I’d like to share one with you concerning challenging behaviors.  It’s called the Choice Law.

The Choice Law states that at any given moment children have choices…and they will always choose to do what they think will work for them!  Doesn’t matter whether they are boy or girl, tall or short, or mild to severe on the spectrum!  It’s the law and here’s what it says:

You do what you do because at some level (conscious or unconscious) you believe your choice of behaviors is going to benefit you.

It’s a very highly reliable law of behavior and if you take a few minutes to reflect back on your life history you’ll know that there’s truth to it.

Let me say it another way because it’s important that you get this:  if your child did not perceive his/her behavior as generating a positive outcome for himself he would not do it.  Plain and simple.  No matter how illogical or strange his behavior may seem he is engaging in it in order to create some potential beneficial result.

Let me state it yet another way because it’s really really important that you get this if you are going to successfully trouble-shoot challenging behaviors:  if your child chooses to engage in a behavior again and again it is because it produces (at least from his perspective) a potential beneficial outcome.  Conversely, if your child does not engage in a behavior again and again it is because it did not produce (from his perspective) a beneficial outcome!

Therefore, one of the first steps in reducing crisis behaviors or de-escalating crisis behaviors is to determine what the perceived beneficial outcome is from your child’s perspective.

But hold on because that’s not where I want to go with this blog post!

The direction that I want to move towards is the understanding and application of how this life law applies to YOU and how YOU respond to your child’s challenging behaviors.  If you’re like me, you’ve responded to your child in ways that causes you to shake your head in disbelief and ask yourself:

  • “What is wrong with me?”
  • “Why on God’s earth do I keep doing that?”
  • “I hate myself when I do that, so why do I keep doing it?”

Good questions.  Answer:  people do what they think will work for them. But that’s just part of the story.

Let’s talk more about this idea applies to parents in my next post…

Author:  Michael Woods (Founder of Relational Crisis Prevention)

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