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Autism Diagnosis: Changing The Landscape

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.

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Talking Toys

The day before yesterday, I felt like buying presents for the kids. It’s not Christmas, it’s not anyone’s birthday, it was just a day when I wanted to pull out surprises for the kids when I got home and see their faces exploding with smiles.

Getting presents for James is easy. There’s just one general guideline to follow: if it has wheels, he’ll love it. When he was younger, it was Thomas the Train. Then it was Hotwheels. And for the last year or so, it’s been Disney’s Cars. The kid has about twenty Lightning McQueens and fifteen Maters, plus a Sally, a Sheriff, a Red The Fire Truck, a Doc Hudson, and all of the other characters, and it’s still not enough. The Cars obsession showed signs of starting to flag a little, but that was before the preview for Cars 2 came out.

And now the toy stores have come out with a whole new line of Cars 2 products. And so I headed straight for the display and picked out a Lightning McQueen (yes, another one) and a Mater (yes, another one). These aren’t just any Lightning and Mater, though. Some previous iterations have had features like the ability to light up or make vroom-vroom noises. These new ones do all of that AND talk!

Buying presents for George is more of a challenge. He doesn’t play with toys in the same way that other kids do. He’s into more cerebral stuff that lets him work with words or numbers, but there are only so many alphabetic fridge magnets and alphanumeric toys that you can buy for one child. The only toy toys that he really likes are Lego blocks and Mr. Potato Head. And again, he has so much of that stuff that buying more would seem like overkill. I mean, his Mr. Potato Head collection fills three large boxes.

But still, there’s always hope that Hasbro has come up with a new Mr. Potato Head character to add to Indiana Jones Taters of the Lost Ark, Darth Tater, and all the rest of them. So I headed over to the Mr. Potato Head section, and to my utter astonishment, I struck gold.

A talking Mr. Potato Head.

This thing is super-cool. You don’t even have to press any buttons to make him talk. He’s equipped with a built-in microphone that picks up on conversation and noises in the room, and he talks back. His repertoire of things to say is surprisingly extensive. An added feature is that when the room is silent, he will say things like, “Can I get some attention around here?” And if you make a sudden loud noise like banging on the table or clapping your hands, Mr. Potato Head’s pieces come flying off.

It’s a fun, fun toy. A bit challenging to have in the room when you’re trying to watch TV because it keeps providing a running commentary, but that’s a minor detail to live with. What’s really fantastic about it is how much George loves it. Getting him a toy that he instantly engages with and has fun with is such a rare experience, and we savour it.

In the meantime, James has fallen in love with his talking Cars cars. He gets them to have conversations with each other (they too, have a decent repertoire).

So things are peaceful in my house right now, with the kids each having cool new toys to play with.

And because of the nature of the toys involved, things are very, very talkative.

(Photo credit: http://www.flickr.com/photos/kiraca/5651863946)

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Toy Story: The Autism Family Version

Last night, my younger son James bravely waded through the treacherous sea of toys in our living room. When he reached the corner he started digging in toyboxes and didn’t stop until he had unearthed this car ramp toy. You use this toy by driving your toy car into this little elevator, which you then raise up until the car is on the flat roof. You can then push the car around on the roof, or send it rolling down one of the two ramps. For a kid obsessed with Lightning McQueen and Doc Hudson (raise your hand if you recognize the references) this toy is like a slice of heaven.

James took the toy to an unoccupied space on the living room floor (i.e. a spot where he wasn’t knee-deep in other toys) and started playing with it. He was having a wonderful time. Lightning and Doc were racing down the ramps, Mater was driving backwards on the roof, and the Dinoco helicopter was flying overhead. It was all very exciting.

The peace was shattered when George came into the room and saw that the toy had been moved. George doesn’t like it when things are moved. He gets anxious, he starts shrieking and insisting that the item be put back. And so all hell broke loose.

George was grabbing at James’ toy, I was grabbing at George and telling him that James has to be allowed to move his own things around, and poor James was crying because of the sudden chaos. My husband succeeded in arm-wrestling George to a different room, where he tried to engage him in distracting activities. I stayed with James and played with him, but the sparkle had gone. James played half-heartedly while listening to George’s cries coming from a different part of the house.

James gave up on his play and said to me, “Mommy, George can put the toy back if he wants. I love him and I don’t want him to be sad.” He ran out of the room and relayed the message to his Dad. Gerard brought George back in, and George put the toy back in its place with James watching. James kept on telling me that this was what he wanted, but he wasn’t fooling me. I could see the sadness and disappointment in his eyes.

How amazing is this child? Despite my best efforts to equalize things, James does on numerous occasions get the short end of the stick because of George’s autism. And yet he is so brave, so giving and caring. He shows a maturity and wisdom that, while touching me to my very soul, makes me feel really sad. Not to mention the fact that it makes me explode with pride at the caring, sharing person my child is growing up to be.

He’s only five, but in some ways he misses out on being like a regular five-year-old. I want James to be able to play with his toys. I want him to be able to race his cars down that ramp, and I want George to be OK and anxiety-free about it.

I want both of my boys to be happy, and I find it so hard sometimes when one of them is happy at the expense of the other one.

What a tricky balancing act.