Tag Archives: autism services

Mother Knows Best

17 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 17 – Learned the hard way: What’s a lesson you learned the hard way? Write about it for 15 today.

I first started having doubts about our family doctor when he kept telling us that there was nothing that could be done about my husband’s sciatica. It was a very disappointing thing to hear: although not a life-threatening condition, sciatica had been giving my husband a whole new kind of agony for a couple of years, and now we were hearing that he would have to live with it for the rest of his life.

It seemed improbable.  What about physiotherapy, or if we were really pressed, surgery? What about a simple MRI scan or a referral to a specialist?

But my husband’s family had been seeing this doctor for years, and they seemed to have complete faith in him. My husband was resistant to my suggestions to see another doctor.

A few months later, when I was hugely pregnant, I took my older son to the same doctor for his two-year check-up. All of the vital signs looked good. George was in healthy percentiles for both height and weight and he was not showing any signs of illness.

With the main purpose of the visit accomplished, I said to the doctor, “George isn’t talking.”

Indeed, George wasn’t talking. The only words that he used in a contextually appropriate way were milk, juice and jump. Like all new parents, I had practically memorized the developmental checklists, and I knew that George should be doing far more at this age.

The doctor asked a few questions, and then agreed that George did indeed seem to be delayed in his speech.

“But,” said the doctor, “The range of normal development is so broad, particularly where boys are concerned. I will give you some speech exercises to do with him at home, and we will see where we are in a year’s time.”

Every instinct I had was telling me that the doctor was wrong, that waiting was not the thing to do. I knew, had known on some level since George was an infant, that there was something wrong.

Instead of trusting my instincts, I listened to the doctor. I did the speech exercises with George, hoped against hope that he would simply open his mouth and talk one day, and then felt extremely guilty when he didn’t improve. Had I not done the speech exercises right? If I had spent more time on it would I have seen results?

At George’s three-year check-up I finally got a referral for a developmental assessment. When the autism diagnosis came in, all I could think of was how the doctor had told us to wait, and worse, how I had listened to a man I already had reservations about.

I thought about the year that George had lost because of this. The year of speech therapy and other autism-related interventions.

The guilt just about killed me.

And I swore that I would never, ever go against my “mother’s intuition” again.

(Photo credit: http://www.flickr.com/photos/truthout/3901813960/. This picture has a creative commons attribution license.)

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Autism Diagnosis: Changing The Landscape

13 Jan

For the benefit of people who are not involved with autism, I will start today’s post with a brief primer on what an autism diagnosis actually means. People who are affected by autism and already know this stuff, bear with me.

Most medical conditions are stated in absolute terms, based on whether they are present or not. Think of pneumonia, Downs Syndrome, or meningitis, to name just a few. The severity of symptoms may vary from person to person, but that does not change the diagnosis.

Autism is a spectrum disorder, and where the individual falls on the spectrum can determine his or her diagnosis. One of the more common autism rating scales is called CARS, or Childhood Autism Rating Scale. For diagnostic purposes, anyone who scores over 15 on CARS is regarded to have an autism disorder. The lower numbers – from 15 to about 25 -  will result in a more specific diagnosis of Aspergers – what some call “high functioning autism” (the use of this term is highly contentious). At the other end of the scale, from about 40 to the upper limit of 65, there are people who receive a diagnosis of autism. And in the middle are the people who are diagnosed with something called PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).

Although people in all three groups are deemed to have ASD (Autism Spectrum Disorder), the specific diagnosis – and therefore the services they receive – will depend on where they fall on the spectrum. It is worth noting that a child may, over the course of his or her life, be diagnosed with all of three things at one point or another. My own son, for instance, was initially diagnosed with autism. His current clinical diagnosis is PDD-NOS.

Primer over. Now I will get to the point of today’s post.

Now, the diagnostic criteria for autism disorders could be changing, and these changes could have some far-reaching effects on the services that are received by individuals who are on the spectrum. Whether the changes would be good or bad is a matter up for debate.

According to the proposed criteria laid out in DSM-V (Diagnostic & Statistical Manual of mental disorders), there will no longer be individual diagnoses of Aspergers, PDD-NOS and autism. Instead, everyone on the spectrum will get a clinical diagnosis of ASD.

This can be good. In the current diagnostic world of DSM-IV, many people on the spectrum do not get the services they need because they are deemed to be “high-functioning”. With a common diagnosis for everyone, the world of services could be opened up to a host of people who have previously not benefited from it.

But.

Let’s take a look at how the actual diagnostic criteria themselves may be changing.

In DSM-IV – the world as we know it today – a total of twelve symptoms are divided into three groups:

  1. Qualitative impairment in social interaction.
  2. Qualitative impairment in communication.
  3. Restricted repetitive and stereotyped patterns of behaviour, interests and activities.

The individual has to display at least six symptoms, with at least two from the first group, and one each from the second and third groups. If this condition is met, along with a couple of other factors, you have your diagnosis – whether it’s Aspergers, PDD-NOS or autism.

The proposed DSM-V has the following stipulations, all of which must be met:

  1. Persistent deficits in social communication and social interaction across contexts. Individuals must display all of three symptoms that are worded in very specific terms.
  2. Restricted, repetitive patterns of behaviour, interests or activities. Individuals must display two of four symptoms that again, are very specifically worded.
  3. Symptoms must be present in early childhood.
  4. Symptoms together limit and impair everyday functioning.

The groupings of symptoms, in conjunction with the way in which they are worded, means that it will be more difficult to get an ASD diagnosis, particularly for individuals on the “Aspergers” end of the spectrum. There is a segment of the ASD population who are regarded as “high-functioning” relative to people more severely affected by autism. These people may not meet all of the criteria laid out in DSM-V.

What this means is that although the actual incidence of autism will continue to climb, we may see a decline in actual diagnoses. The general public will be misled into believing that the autism epidemic is being brought under control.

And a host of people who need services could be denied them, simply because they don’t meet the right combination of conditions listed in a manual.

It is important to note that the DSM-V is, at this stage, a draft. It will in all likelihood pass through a host of revisions based on feedback and testing. The DSM-V that is ultimately released could look very different to what is discussed here.

It will be interesting to see if, and how, the autism diagnostic landscape will change.

2011 Run For Autism – The Countdown Begins

3 Jun

I’m feeling fantastic today!

Actually, that’s not strictly true. I was awake all night with a sick child, who at some point during the process very generously shared his bug with me, as a result of which I am bone-tired and tossing my cookies. So in reality, I feel really, really rough. I feel like a hedgehog that just got dragged backwards through the business end of a lawnmower.

But despite my less than stellar physical condition, I am feeling good about some things that have happened this week.

First, I resumed early morning running. I’ve been a little out of it for a while, and a lot of my running has been done on the treadmill. But two days ago, I dragged myself out of bed and went for a run before work. It was great. I felt the way I always do when go for early morning runs: alive, invigorated, positive about starting the day with an accomplishment. And since my route involves me running east over the Rouge Valley bridge, I get treated to the most spectacular sunrises. I mean, what’s not to love about all this?

Later that same day, I got a series of emails informing me that I am now officially registered for the Scotiabank Toronto Waterfront Half-Marathon. Which means that everything I do between now and then (everything running-related, anyway) is in preparation for that race. It is my annual Autism Run – the reason I got back into running two years ago. This will be my third year doing the run. In 2009, I finished in about 2 hours and 28 minutes. In 2010, I improved that time to 2:22:38, knocking more than six minutes off my time from the previous year. This year I want to do something even more spectacular, and break 2 hours.

That will be a tall order. Taking 22 minutes off a time over a distance of 13.1 miles? It’ll be tough. But that’s not going to stop me from trying.

The other thing this all means is that I am now officially fundraising, enlisting people to sponsor me for the run, trying to gather together as much money as I can that will all go towards providing services for children and youth with autism.

I cannot stress how important this is. George’s progress since diagnosis has been off the charts, but this is no accident. It has taken many hours of hard work, buckets of tears, patience, IBI therapy, parent training, information sessions, and advice. George would not be where he is today if it weren’t for the Geneva Centre for Autism, who have provided services and training and all kinds of other resources.

I cannot help but think that if George continues to get services that evolve with his needs as he grows up, the sky will be the limit for him. This child is so loaded with potential, but he does need help and support to realize it. If funding dries up, so does my child’s future.

So I spent some time yesterday setting up my fundraising page. I have set my initial target at $500, but I am really hoping to surpass that and raise the target. Preferably more than once.

My call to action is this: if you have the financial means, please consider sponsoring me for my run. If you cannot afford it (and I totally get  that – life ain’t easy for many people right now), then please spread awareness about autism. Help spread the word that people with autism are a valuable part of our society.

And if you circulate the link to my fundraising page, that will be an added bonus as well.

I am excited about getting this show off the road and doing the best I can for my George, which means doing the best I can for my family, and for the community of autism.

Racing For Autism

7 Feb

I have all kind of things pinned up on the walls of my workstation. There is the requisite work-related stuff (contact sheets, cost centre codes, month-end dates, cheat sheets on how to use the corporate phone system, and so on). Then, because I am a parent, I have artwork by my kids proudly on display (three masterpieces by each child). I have a card that my coworkers gave me along with a cake to celebrate the dual occasion of my citizenship and my engagement (to clarify: I have the card. The cake is long gone). There is my Cake Wrecks calendar, which is so funny that the tears of mirth streaming down my face make my mascara run (this week’s page has pictures of Valentines cakes with icing messages on them reading, “Sorry for stealing your boyfriend”, “Nobody loves you”, and “I didn’t like you that much anyway”).

Then there is my collection of race numbers. It’s a bit like a brag wall, really, but it’s one that I feel justified in showing off. It feels great to stagger in to the office on the Monday after a race, and pin up a new number. Looking at that number, along with whatever race time was associated with it, somehow makes all of the aches worthwhile. That and the fact that running is just awesome.

My first race after my comeback to running was on September 27th, 2009 – just over sixteen months ago. In those sixteen months, I have run a total of nine races, which collectively covered a distance of 130.3 kilometres or almost 81 miles. This year I will be adding at least another 91 kilometres (56 miles), and quite possibly more.

The truth of the matter is that there is only one race every year that really matters to me. It is the race that got me back into running in the first place, and it the focal point of my racing calendar. Every step I take in training, every other race that I run, leads up to this one. Without this race, I don’t think I would be doing this at all.

It is, of course, my annual Run for Autism, the Scotiabank Toronto Waterfront Marathon, Half-Marathon and 5K.

For several years during my long layoff from running, I tried to get back into it, but there was always a reason for me not to run. When I got that first email from the Geneva Centre for Autism inviting me to sign up for a race to raise funds for autism, I realized that all that had been missing was the right reason to run.

Initially I was going to sign up for the 5K race, knowing that it would be well within reach, but then I thought, “Screw that. Since when do I only do things that I know are within my reach?” I looked at the calendar, did some math, and worked out that in six months, I could just about train for a half-marathon from scratch.

The rest, as they say, is history.

Now I am looking forward to my third annual Run for Autism. I have a lot going on before then – at least four races including the Toronto Women’s Half-Marathon (Shirtless firefighters at the water stations! Free chocolate!). But really, the Autism Run is what it’s all about.

When the going gets tough, all I have to do is remind myself of why I am doing this. Because of a genetic roll of the dice (as I believe) I have a child with autism. Without help along the way, my beautiful boy would be at risk of getting lost in the system, of growing up without any opportunities. Instead, thanks to places like the Geneva Centre, the world is within his grasp. He has a lifetime of challenges, and his life will never be quite the same as most people’s – but along with the challenges comes opportunity.

My Autism Runs are all about raising funds for those services, to ultimately help make the world a better place for George and for other people like him.

Because really, look at him. Is this not a face totally worth running for?