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Is “Asperger’s” on the way out?

by Tim on November 5, 2009

It’s that time again when they update us on the progress of how the clinical definitions of autism may be redefined in the next version of the Diagnostic and Statistical Manual of Mental Disorders, or DSM. (Read more about this in our The Clinical Definitions of Autism, Asperger’s, and PDD-NOS post from a while back.)

The Neurodevelopmental Disorders working group for the DSM-V (V = 5th Edition) has an interesting list of issues related to ASDs that they are trying to reach conclusions on before the 2012 target date. (Note this is an older version of the list, but it’s still a fascinating read.) To say that whatever is ultimately approved for inclusion in this manual will affect the lives of both parents of autistic children and autistic persons is a serious understatement.

There has already been a lot of commentary and some controversy about this process. It does seem, however, that the working group assigned to revise the DSM for autism have tried to be methodical. careful, and sensitive to all the issues involved. Honestly, I think they were given an almost impossible task here. We won’t really know how well they succeeded until we see the first draft.

This NY Times article describes the latest controversial issue in this process as well as some ongoing ones. This most recent one has already drawn a ton of reaction and might easily be among the most talked about when the draft is released.

The big question being discussed now is whether Asperger’s as a specific, separate diagnosis will be left out of the next DSM. ‘PDD-NOS’ may also be going away. Without the draft actually existing yet, it’s hard to really dig into the real-world meaning of this, but for whatever these are worth, here are my comments about this and some other points.

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I’ve been following a series of brilliant posts written by Bev at Asperger Square 8 about her reflections and development of a checklist regarding neurotypical privilege.

For parents like us who live in a very insular world of toddlers and early elementary school children, we tend to completely miss the broader conversations going on about what kind of society and culture our autistic children are growing into. And by being so focused on everything going on in the present (though understandably so) we also miss out on seeing all the possibilities that are waiting out there for our children’s futures. Within the chaos of everyday life, perspective is hard to come by. But this – among many other reasons – is why if you aren’t reading blogs written by autistic adults, you should be. (Asperger Square 8 can – and should – be one of your first stops.)

But enough of my typical rambling preamble. Check out her latest draft of “The Checklist of Neurotypical Privilege” – it’s eye-opening and challenging and brilliantly written. And for me at least, it is one of those landmark, defining pieces of writing I’ll be coming back to over and over again for both a swift kick in the butt and some real perspective on how to be the best possible parent to the J-Man and advocate for autistic persons of all ages.

Biggest lesson I’ve learned so far from reading her work? I have a lot to learn.

Note – You should be able to follow future revisions to her checklist at http://aspergersquare8.blogspot.com/search/label/privilege.

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[Personal note: I know I haven't blogged in eons. The chaos of work, the J-Man going on break from school, the serious need to work on some of his behavioral issues, illnesses, and the overall bedlam of baby-parenting have been exhausting. Just wanted to let people know we haven't died or something!]

The adjustment to life as the Flashlight Four has been a challenging one to say the least. Our primary concern has been how all these changes would affect the J-Man as – not surprisingly – even small variations in routine can be difficult for him, and a new baby in the house is decidedly not a small variation in anything.

Things were going along more or less OK, but then we started noticing some significant changes in his behaviors at home. Nothing aggressive or in any way what you might call ‘negative’. It’s that he was so completely overloaded that he would run around screeching, stimming like crazy, spinning in wild circles, and pretty much literally bouncing off the walls. He couldn’t sit still for more than about two seconds for anything, not even for his favorite shows (which is a sure sign something is amiss).

When his teachers said they were noticing similar changes at school and that it was really affecting him there, we knew we needed to concentrate our full attention on finding something to help him get through this.

His OT at school suggested trying out a weighted vest at school and at home. If you’ve never heard of this, it’s worth getting some background information as we’re now total converts to weighted vests as a tool that may help sensory-overwhelmed kids. (BTW – To use one at school here, it has to be ‘prescribed’ and supervised by the OT as otherwise it’s considered a restraint, which is not permitted. Don’t ask; I don’t understand that rule either.)

I found an article (“Weighted Vests for Children with Sensory Issues”) and some additional information on commercial sites at eSpecial Needs and WeightedVest.com. (Note: I’m not endorsing their products as I know nothing about them, nor about anything advertised on these sites. We made our own vests – more below.) Research on the broader effectiveness of weighted vests hasn’t really been conducted to any real degree, so your mileage may vary for sure. All I can say is that our recent experience has made believers out of us.

We tried a weighted vest about a year ago, but the J-Man just walked around like a drunken sailor with it on. His gross motor skills were much less developed then, and the overall experiment was more or less an interesting failure. I think the added year of development and the resulting additional body weight made a big difference toward the success of our recent work. The OT last year did say that before age 3 is early to be trying this out and expecting to see much benefit. We’re very glad we tried it again now.

We borrowed the vest the OT had (I think her mom had made it) and used it both at school and at home for a couple of weeks. He’d wear it for about 20-30 minutes at a time about every two hours. We always tried to do some heavy proprioceptive sensory work while he was wearing it.

(For those still struggling with autism terminology – ‘proprioception’ is basically the sense most of us take for granted that helps us be aware of where our bodies are and what the various parts of ourselves are doing. Example: I’m aware that I’m currently sitting in this chair and that my butt is firmly in contact with the seat of this chair. Now imagine the chair slowly fading out of existence such that you are still in a seated position but you feel it less and less until you don’t feel it at all. Bet you’d seriously flinch and jump to your feet. Know that sensation of falling you sometimes get when you’re in bed and half asleep? Imagine that your kid feels that way all the time, which they very well might.)

At school, they often have him carry heavy objects around (e.g., old encyclopedias) or jump up and down on the mini-trampoline. He loves our little mini-trampoline at home (more accurately, in the kitchen), so he climbs on it and jumps forever. His current record is 13 straight minutes… And he much prefers it if you sing “Supercalifragilisticexpialidocious” and hold his hands while he’s doing it.

The change has been really quite remarkable. One of the teachers said something to the effect of, “We’ve got our old J-Man back!” He really has seemed so much more like himself.

Since commercial weighted vests can be very expensive, we decided to make our own. Or more accurately, we decided to sweet talk Mary’s mom into making them. :-) The basic construction of it is fairly straightforward, but neither of us know how to sew worth anything. Essentially, we (more the ‘royal we’ where we = Mary’s mom) got some heavy denim fabric and some thinner, more decorative fabric to go on top of that, made it into a long vest, and then rolled up the bottom and sewed in pockets to put weights in. Velcro along the back helps fasten it around his body.

Here are some pictures of the J-Man modeling. I thought the chili peppers were an inspired choice.

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For the weights, we took the 1/2-pound inserts out of some adjustable ankle weights (like these) and put one in each pocket. We think these are still too bulky – they make the waist really poof out and hard to velcro closed – but they are still less bulky than the other things we tried such as BBs, sand, pennies, and sinkers (fishing weights). Next things we’re thinking about trying are dense modeling clay and buckshot. (FYI – a digital kitchen scale is a huge help in figuring out the weights and getting them balanced all around the vest, something that’s very important.)

Between the weights and the heavy fabric, the whole thing weighs about 2 1/2 pounds. I’ve heard varying recommendations on how much weight to use, but the consensus of what I’ve been told seems somewhere between 5-10% of the child’s body weight. We’re kind of on the lower end of that right now.

I’d be interested to hear the experiences others have had with weighted vests. If any of this has made you want to try this out, talk to your occupational therapist. You shouldn’t start putting weighted anythings on your child without the supervision of a trained OT who can tell you whether this is appropriate for your child and their needs and what sorts of ‘heavy work’ would be most helpful to them.

As with most things, so much of our learning comes through trial and error, but we definitely feel we have trial and success here!

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Happy World Autism Awareness Day!

by Tim on April 2, 2009

April 2nd is World Autism Awareness Day. It was interesting to go back and read my reflection last year about this day, especially since it came just a couple of weeks after we got the J-Man’s diagnosis. Looking back, my awareness of the public landscape of autism for parents was pretty spot on, which honestly depresses me somewhat.

However, what I was barely aware of at the time was the overwhelmingly supportive community of parents, teachers, professionals, and advocates and all the wonderful children we’ve met in our journey since. Admittedly, we live only in our little corner of the spectrum, venturing only on occasion outside of our Pre-Kindergarten world. But we know there’s a whole universe of wonder out there that we haven’t yet explored.

So, ‘awareness’ for me right now comes in working to expand our horizons outside of our five-years-old-and-under world and soaking in all the goodness out there. But first, there’s this whole thing about us having a baby. :-)

But for this post, I wanted to offer a little commentary based on what I’ve discovered over the past year for people who don’t know a lot about autism yet but want to learn. Here’s what you can do on World Autism Awareness Day, or really any day for that matter.

1. Whenever autism is mentioned on TV, mute the volume or turn it off. Whenever you read the word ‘autism’ in a newspaper, move on and read something else. Ditto for major magazines and online news media. Why? The mainstream media has demonstrated no ability in sorting out the quality information from the BS. Anybody with a loud voice, money, and a crazy idea can get prime media real estate to talk about their autism theory. The media either can’t or won’t referee the quality of the information. Lately, all they seem interested in is fomenting the controversies, which only confuses people – especially scared parents – more. Plus, you really won’t learn anything useful in any of those media outlets anyway.

On a related point – there are a lot of snake oil salespeople out there and a lot of people with their own agendas. Be very wary.

2. Which brings us to where you can learn some things – go read blogs written by parents who are telling their stories about life with their autistic children. I’ll guarantee you what you read will sound very different than 99% of the crap in the media. Where should you start? Why, there are some great blogs listed in the right column of our site! (Note: a few of them aren’t about autism directly – Wrightslaw, Rachel, Speech Therapy Today, and to some degree Special Needs Truth – though they are all important reads in my opinion for what they do.)

3. Go read some blogs written by people with autism. There you will get an even more very different view from the media. I haven’t finished my blogroll of sites written by autistic persons yet, but for starters I’ve learned a lot from reading blogs like Asperger Square 8 and Whose Planet is it Anyway? and from reading sites like Wrong Planet. In about 30 seconds you’ll realize that most people talking in the broader media about autism haven’t even bothered reading sites like these.

4. Decide today – if you do ever say it – that you won’t use the ‘R’ word anymore. I will confess publicly that I have at times in the past used this word, and I admit that to my shame. Time for us all to fix that. By the way, Spread The Word To End The Word ‘r’ Word Awareness Day was the 31st.

5. Expunge from your speech the often-used negative rhetoric about autism, starting with not repeating any of it that you hear. My child isn’t an empty shell or a shadow. He isn’t lost or broken. He is not cursed or stolen from us. He is perfect the way he is, and he is the treasure of all of our days. He has made me a better human being; he is the best teacher I’ve ever had. And he’s not even 4 yet. If anyone thinks my child is defective, I’ll set up a place to meet with them and they can tell that to my face. I suggest they bring money for cab fare to get home and a copy of their insurance card.

Decide to have a more positive view of autism in spite of all the negative messages out there. There are countless wonderful people with talents to share with the world, except that world often ignores them or assumes they have nothing to offer. Everyone deserve the opportunity to live out their potential. Go fight to help make that happen.

And don’t feel sorry for people with autism or for people like us who are proudly their parents. Support, advocate, cheer, and celebrate instead.

Extra Credit – Be aware that our kid is the cutest kid in the world! :-)

Super Extra Credit - Remember, whenever someone says anything bad about autism or people with autism, they’re saying it about this beautiful little child – my beloved son.

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Handy Handouts

by Tim on March 13, 2009

[Post edited 11/6/2009 as the Handy Handouts site has undergone a major upgrade.]

While talking to the J-Man’s teacher about getting some picture communication gear, she told me about Super Duper Publications. They have an extensive catalog of useful products (haven’t ordered anything yet, but probably will), but our link for today is for their “Handy Handouts”.

They have a lot of useful material here about autism, speech, behavior, and more. A decent number of them are in Spanish too. There is some marketing tie-in for their Super Duper Publications site, but they are a business and they are providing good content for free here so don’t hold that against them.

You do have to register for a free account to access them, but it’s simple and painless. This also gets you access to the “Free Stuff” listed on the left side of their home page. About half of that is for therapists and other professionals, but there’s a lot of stuff for us too.

[ed. - If you previously created an account on Super Duper, it still works and still gives you access to certain materials. The materials on the Handy Handouts site do not appear to require registration anymore; all the ones I tried to access were freely available. Yay for them!

They also now have a Facebook page!]

I highly recommend watching some of the Product Demos. They’re pretty neat. Invariably when I look at some therapy toys and equipment I think, “What the heck is that for?” Now you can see some of these things in action. Always fascinating!

While we’re talking about Internet resources, don’t forget about Do2Learn. And feel free to post other similar resources in the comments!

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This is Part 2 of our series “What’s Your Autistic Toddler Like Now?”, a journey through what’s happening these days in the life of our autistic 3 1/2-year-old son and sequel to our very popular original article, “What’s Your Autistic Toddler Like?”.

Note: Wherever you see “DSM-IV” below, this means that attribute is part of the diagnostic criteria for autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. In medical terms, a specific combination of those DSM-IV criteria is what brings about a diagnosis of autism.

Same obvious disclaimer as before: We are not advising you on how to evaluate your child. Go get them evaluated by professionals with extensive experience with autism. Don’t just rely on some random people on the Internet – namely, people like us.

If you haven’t already, go back and read Part 1. If you have, let’s continue on!

Characteristics That Are Significantly Present (continued)

Difficulty with social awareness (a bit better but a lot to work on) – I don’t know whether this has an official meaning, but I think of social awareness in a very broad sense as being aware that there are people around you and that they can be engaged with at some interpersonal level. For some time, we referred to other kids in the room as ‘part of the furniture’ as our son didn’t interact with them much differently than any other object in the room.

School has helped him in this regard in that he has regular time every school day with the same children and is involved in activities with them on an ongoing basis. You still get the sense that he’d usually be content without them, but often the emotions of an autistic toddler are inscrutable.

He does enjoy watching other kids do funny things, but watching rather than playing with children is one of those possible signs of autism, and this is a fairly accurate description of where he is right now.

That said, it is nice to see that he’s aware that other people have names, and he can use a name to refer to a person, though usually now that’s only with some prompting.

Continue on with Part 3! [click to continue…]

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What’s Your Autistic Toddler Like Now? (Part 1)

February 20, 2009

Many times over, our “What’s Your Autistic Toddler Like?” post is the most read article on this site. It’s also the post people most often cite as the reason why they write us and become regular readers of our blog. We are gratified by your response to our story about our son and hope all [...]

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The Clinical Definitions of Autism, Asperger’s, and PDD-NOS

February 19, 2009

As a preamble to the upcoming sequel to “What’s Your Autistic Toddler Like?” (coming very soon!), I thought we should first go straight to the source in which the diagnoses are defined – the Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition or DSM-IV. (Technically, it’s DSM-IV-TR, where TR stands for ‘text revision’, [...]

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