Tag Archives | diagnosis

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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Autism awareness? I live it every day

By on April 14, 2011 in Autism, Autism Awareness

Not a lot makes me cringe more than seeing/hearing/reading a parent of a child with Autism say that they don’t bother with Autism Awareness Day/Month because they don’t feel they should tell others about Autism since it doesn’t affect them.

autism awarenessI’ve read more tweets and posts this month than I’d like to from parents giving a multitude of excuses why they haven’t gotten around to it, or haven’t bothered or feel that they simply shouldn’t attempt to raise awareness of Autism… and that’s kind of sad.

How can a person recognize the signs in their own child unless aware?

There’s a lot of debate within the Autism industry as to whether or not numbers have risen (at least in part) due to the fact that people are simply more aware of what to look for, recognize it earlier and thus, are more likely to get an official diagnosis.

There’s good reason for that debate.. it’s because it’s true that greater awareness is what leads to people being able to understand why their child won’t look them in the eye, doesn’t respond to their name, doesn’t talk yet, separates their blocks by colour and lines up their toys in a perfectly straight line across the living room.

Finding the support and information they need

After a diagnosis, most parents feel extremely lost as they’re put on waiting list after waiting list and worse than finding no answers, they find a lot of contradicting answers.

If you and I didn’t speak out, and speak loudly, they’d never find us. And if they never found us…. well then, they truly would be alone.

Waiting lists don’t explain to parents the benefits of weighted blankets, the gf/cf diet, the necessity for strict routines, how to handle IEP meetings and so on and so on.

Will your child forever be a freak or will people understand him/her better one day?

How can we expect parents to stop judging us and our children during those grocery store meltdowns if they never learn about Autism? How can we expect our childrens teachers to have more patience or even recognize the signs themselves? How can we expect more random people to step up and offer gymnastics, swimming, skating and other community type programs just for our children with Autism… simply because they want to help?

People won’t just look at your children differently… they’ll look at them as weird, freakish or even worse because if they’re not aware, what else are they supposed to think?

Conclusion

No, maybe the meltdown happening in your living room isn’t anyone’s business but that of your own family but that shouldn’t mean not raising awareness at all.

By not doing your part, you may be leaving one troubled child undiagnosed… you may be leaving one parent lost with no one to turn to… you may be letting some innocently ignorant person incorrectly judge another person, making them feel like a terrible parent.

Worse than all of that, you are indirectly affecting your own child’s future because one day your child will have to face those people you didn’t bother to share your burden with and those people won’t understand him/her. Those people will judge your child and judge them harshly.

They say that if one person recycles everything, little change is made in the world but if everyone recycles just one thing, a very significant change is made in the world.

Same goes for Autism Awareness. You don’t have to get on national television or scream from the rooftops… it’s not about invading people’s lives. It’s about sharing so that those that want to listen, those that want to hear it, those that seek it out… can find it.

You may live it every day and those you’re attempting to educate don’t… but maybe they will one day. And maybe, just maybe, your voice will be the voice that makes a positive impact on their lives that lasts a life time.

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Denial: The Worst Thing You Can Do For Your Child is Nothing

By on July 20, 2010 in Autism

As a father, I get a lot of moms asking me about denial when it comes to their child with Autism. It’s because most of the time, if a person is going to be in denial over their child’s diagnosis, it will be the father. Now, this isn’t 100% of the time obviously, but generally speaking, men do not want to hear that their child “is retarded”… I know, that’s harsh but that truly is what goes through their mind when they hear the diagnosis.

It’s amazing that we’ve come such a long way from our barbarian ancestors and yet many of us still can’t accept that there may be flaws in our offspring… that they aren’t perfect.

It’s not as crazy as them wanting to cast them off a cliff for being imperfect, it’s just that they don’t want to admit that their child has a disorder, they just keep telling themselves that their child is just taking longer to develop.. they’re just struggling… they’re just not ready… they’re fine.

Now, I can’t emphasize this enough so I’m going to repeat it several times… the worst thing you can do for your child is nothing! If your child has Autism, doing nothing means putting off their road to recovery. If your child does not have Autism, what harm did it have in helping them learn to talk or walk or socialize?? What harm is there in finding out more information??

For each and every single day that you put off a doctor’s visit, a therapy session, a chance to read up on some material or a chance to talk to an expert, you are putting off your child’s entire future… and you’re not just putting off their future by a day, you may be putting it off completely.

That one day of extra work could have made the difference between a communicative adult with Autism in the world and a communicative adult with Autism still living with you at home. Think that’s extreme? It is. And it’s the grim reality of it… every single day, every single moment… makes a difference.

It’s true that early diagnosis is key to treating Autism, but it’s just the key. You have to use that key, open the door and go through it and until you do, the diagnosis was for nothing.

Being in denial about it, refusing to believe, refusing to accept… you’re shutting the door on your child and on your child’s future and for what?? You’re pride? Will you feel good about it in 30 years when your child still doesn’t talk? hmm… that sounds extreme too, but again, it’s the grim reality of it.  It’s the risk you take when you say no. It’s the risk you take on behalf of your child when you do nothing because again, the worst thing you can do for your child is nothing.

In fact, most often times when a father (or either parent) is faced with an Autism diagnosis that they are denial with, they actually spend even less time with their child than they would have if they hadn’t gotten the diagnosis when in reality they need more attention. They need your help, your love, your guidance. And if you are not there to give it, you haven’t helped, you’ve condemned.

I’m not here to make you feel guilty if you refuse to believe your child isn’t perfect, I’m here to help protect you from the guilt you’ll feel later when you finally do realize that if only you had acted sooner… your child would have been so much better off. You can’t go back, you can’t erase the guilt.

All you had to do was act. All you had to do was be there. The worst thing you could have done was nothing.

Comments { 3 }

How Old is Autism? Is It a New Thing or Has it Been Around a Long Time?

By on June 10, 2010 in Autism

I’ve seen this question asked a lot around the internet, and have been asked by a lot of people “Why is there so many people getting Autism these days?”

Keep in mind, I’m in no way telling you that this is how it is, it’s just my take on what I know based on what I’ve read and come to my own conclusions…

A lot of people blame vaccines, if not for actually causing Autism in their child, then for at least triggering it or being the final straw that allows it to manifest and steal their child away from them. The reason I bring this up is that it, in my mind, distorts their perception of the origins of Autism. Naturally, no one knows what causes it exactly or how long it’s been around, but I’d venture a guess to say that it’s been around a lot longer than our vaccinations.

For example, just yesterday I was discussing with someone how, when we were children, we had a lot less vaccinations than kids do today. Which is true, but then I think to people like Temple Grandin who is now 60, which is near twice as old as I am and how little she must have had to endure in the way of vaccinations. Also, I know some people that are Autistic and never once been vaccinated. And Autism happens in countries where vaccination isn’t even available! So, perhaps it’s a reason for the spike in occurrences but certainly not the cause. So it’s safe to assume that Autism was around before vaccines became a big money grab for pharmaceutical companies.

My grandmother, who is 75, asked me why there seems to be so much Autism these days, to which my reply was… are you sure there’s more now? It was in that instant, as she asked me, that I started to really contemplate it. My first question back to her was “when you were in school, was there a ‘special education’ class where the ‘slower’ kids were put?” and she said yes, there in fact was. I think most of us can remember such a class or classes in our school.. some had a trailer which separated them from the building. She said that those children didn’t talk, or would scream a lot, or needed a lot of extra help in learning things. Hmm… that sounds familiar.

The whole notion of Autism wasn’t even around until 1910, and even then it was used to describe schizophrenia, until 1938 when Dr Asperger used it to describe a much more specific disorder, the one we know today. That seems far enough back but in fact, even then it was still considered just to be an anti-social thing that children had due to “refrigerator moms” not loving them enough.

In the meantime, people have said that Isaac Newton, Albert Einstein, Mozart, Van Gogh and more quite likely had some form of Autism… it’s impossible to be certain obviously, but if true, then Autism could date back hundreds of years.

Now, we come back to present day and ask, why is there more now? Well, I’m no scientist so I can’t tell you for sure that there is or isn’t more cases today just that, in my opinion, I think it’s mostly a matter of people becoming more aware. I know people right now who’s children are obviously Autistic, but they’ve never been diagnosed. The parents either are clueless, simply not aware of Autism at all or are in denial. I read all the time of children being diagnosed at 2, 5, 9… even 15 years of age.

Remember, the doctors give the official diagnosis that gets counted but it’s the parents that have to make the initial diagnosis. They’re the ones that have to recognize, accept and seek out the diagnosis from a specialist before their child is counted.

Going back 5, 10, 20 years ago, there were very very few doctors that could make that diagnosis, much less parents that could recognize it. I mean, it wasn’t that long ago that moms were told they were crappy parents and therefore the cause of it. Why would they go to a doctor to hear that?

Do I think that there are more cases now than 100 years ago? Sure, it sure seems like it. Do I think that there’s some force causing a huge fluctuation in the numbers? Not so much, and I’m probably mostly alone in this thinking but I think given it’s long history, given how parents are becoming more aware and seeking diagnosis more now than ever before, given that there are more doctors and facilities to make a diagnosis… the numbers will just naturally go up all on their own even if the actual number of Autistic children don’t.

The question is, if we could have every single Autistic person counted now, and count every single one 5 years from now, taking out all the variables such as parents who don’t know, the ones that have no way to get a diagnosis, the ones that are simply getting a diagnosis later in life…  would the numbers be that much different? And if so, how different?

I would love to hear what you think… did you have a special ed class where “slow” children were placed even though they were never “diagnosed” with anything? Do you believe that Autism is a new thing that’s just coming on due to vaccines or pollution in the air?

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