About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Tuesday, September 23, 2008

Coming in 2009.

Hyperlexia: A Literary Journal Celebrating the Autistic Spectrum.

In an interview, the editors describe the purpose of the journal:

There is so much noise out there about autism - much of it hyperbolic, stereotyped, biased, inaccurate, and hysterical. Our hope is to create an arena where we can get to some truths about what it really is to be autistic and to love people who are autistic.

Too true, and amen to that.

FYI, the editors are soliciting essays. The deadline for submission is December 31, 2008. See the website for details.

Kerry Cohen, one of the editors, authored this story, which resonated with me. I feel as though Brad and I are on a similar journey as she and her son, and I share her values. I look forward to the journal's publication.

11 comments:

rhemashope said...

Thanks Laura. I read Kerry Cohen's story and it gives me a different perspective which I can certainly appreciate. I have never liked the word "fix" when it comes to therapy and treatments for our kids. While I will continue to do everything I can to help "treat" my daughter's seizures and feeding and communication problems, I know that she (her person, her character, her idiosyncracies) is fine just the way she is. (Sorry for the long run-on sentence!)

~ April ~ said...

I just found your blog tonight, and can really relate. My son is 26 months old, and seems very similar to Brad, expecially in your list of neurotypical vs. autistic traits.

We talked with his [regular] pediatrician today who suggested there's a good possibility that he might be on the spectrum. :( He offered a referral to a specialist, but I turned it down, just because I thought that 2yo was way too young, but after reading your blog, as well as some other sites online, I'm starting to re-think that choice.

He's currently in ST, but I'm wondering if OT would be beneficial.

Anyways, I'm definitely subbing to your blog, both for information as well as to see Brad's progress. Thanks!

Laura said...

rhemashope - thanks. Kerry's story is a reflection of the diversity of the spectrum. I'm not anti-treatment in the least. I'm choosing a certain path because that's what is working for Brad. If I have a refrain it's: one size doesn't fit all.

April, hi and welcome. You know, early intervention originally referred us for ST, OT and developmental therapy, and I originally turned down everything but speech. So I can relate to feeling like huh??? I didn't even know what OT was. Today, I feel like of all of his services OT is easily the most valuable. Brad's OT consistently gets him at the top of his range, in terms of social and communication. I've seen a ton of progress on the OT front, and I believe the progress on the other fronts is related. Definitely get into the queue for OT.

A little boy just 2 years old said...

Im not sure if it was you or someone else I asked why they liked their OT so much... but I am just not sure what OT is supposed to do for us. I dont feel at all like you - OT hasn't made much difference yet. Any chance you'd email me or detail a post of what kinds of things your OT does?

scottandbriana at hotmail dot com

Jann said...

April...There are many of us who disagree with Laura's rather unique take on the
"autism spectrum."

2 is actually pretty young to label someone with a PDD or autism label, many EXPERTS feel. The diagnostic reliability is not there at that young age.

It's not too young to work on whatever individual symptoms your child might have, such as speech, or OT IF you think your child's fine motor skills are lacking, or PT if you think your child's gross skills need help.

Check out Dr. Stanley Greenspan. He has maybe view on how to differentiate between a spectrum child and one with other differences, and he's a renowned autism expert.

If you do go to a professional, make sure they KNOW WHAT THEY ARE DOING!!! There's a whole group of assessors who don't have the training to accurately assess autism, or differentiate it between other disorders. An assessment will take HOURS to do, not minutes. RUN from anybody who tries to sell you on autism label to get services, or because your child didn't make enough eye contact with them the first time they met them.

Also, know this: You can go to 5 different evaluators, and get 5 different opinions. And then the school district will give you a sixth one -- many districts are VERY quick to label a child autistic. There's money in it for them!

Laura said...

Jann-
Think about what you are saying. You don't know what this person's child is like. You don't know that this person's child couldn't benefit from ABA or Floortime. I don't know either. But I don't foreclose the possibility. Doing so is dangerous because time is precious. Some people are actually more concerned with learning about their child's condition than they are with the actual label.

Jann said...

Laura, I do think about what I'm saying.

I said TREAT the issue. BUT NO INACCURATE LABELS!!!!!!!!!!

You view labels as beneign. They are not.

An accurate label of PDD or autism is a lifeline to correct services.

But an INACCURATE autism or PDD label is like an anchor weighing your child down. It sets them on the wrong path, with many of the wrong services.

In no way did I suggest a parent shouldn't seek to deal with their child's issue. You keep insinuating it, but it's not true.

But I do say: NO WRONG LABELS! And no early "guess" labels that send your child down a ruinous path.

Laura said...

oh my. This is why the group gets the reputation for regarding autism as a scarlet letter, and encouraging denial.

Here's the deal: the American Association of Pediatrics recommends screening at 18 months. See link: http://www.aap.org/advocacy/releases/Oct07autism.htm You indicated that "experts" call into question early screening. Preytell, what experts are you referring to? What's going to happen if you get a provisional dx? Seriously? No one can force services on your child. More information is somehow bad? And do you dispute that ABA can be extremely beneficial to some, and is more beneficial if it commences earlier?

You can counsel your group members to "wait and see", but that ain't flying on this blog.

That having been said, people have to get to that mental place where they want to seek a dx on their own. I'm not here to force anyone down one path or another. I'm just here to say that the world doesn't open you up and swallow you when your child receives a dx. The path that Brad and I are on is the progressive path.

Jann said...

Wrong information is bad. That's the problem. And giving a parent a bogus PDD or ASD label and them shoving them out into the world with no guidance is bad, and that's being done every day across this great land of ours.

ABA is reportedly helpful to autistic children. NOT LTers. It would have been a terrible decision for my child.

Not to mention that it's PHENOMENALLY expensive, and is bankrupting families left and right.

I do think Floortime could be good for just about everybody.

I'm saying parents should be informed, trust their gut, know the accuracy of their assessors, and look closely at the stories of autistic children who are 7, 8, 9. See if you see the match with your own child.

And lots of folks disagree with the 18-month-old autism witchhunt toddlers are being subjected to now. My son's pediatrician, for example.

Laura said...

"ABA is reportedly helpful to autistic children. NOT LTers. It would have been a terrible decision for my child."

Going back to my first point, you don't know where the commenter's child is on the spectrum, if at all, and you appear assume that she isn't on it. To counsel a parent under those circumstances to wait and see is irresponsible.

China said...

Thanks for posting about the journal coming in 2009 and for the article. I relate to your perspective also. My son was called "possible Aspergers" by a Dev. Pediatrician and as PDD-NOS by a Psychiatrist whom he still sees. I find that I relate him to those with Aspergers. I had an ABA evaluation done but didn't like their plan and didn't pursue that. I've read about sensory integration, floortime, Greenspan's stuff, etc and mostly implemented things at home. He used to get ST and OT but has tested out now.
Our situation is a little unique in that he was adopted at age 3 1/2. Here's a link to my post about getting him diagnosed. He is 9 now.
http://spectrumkids.blogspot.com/2008/07/flashback-to-diagnosis.html
I intend my blog to be a wry or humorous look at life with an older child with an ASD.