SPD in Time Magazine

Just when you thought I might not be posting for a few days, I received my latest issue of Time Magazine in the mail and had to write something.  I had already been notified through Google Alerts about this article, but was distracted by the end of NaBloPoMo and didn't know whether it would be included in the print version of the magazine.  And here it is, in my house.

The article, titled Is This Disorder For Real? gives a basic overview of SPD and talks about a few children currently undergoing sensory based therapies.  There are quotes from Lucy Jane Miller of the STAR center and background from A. Jean Ayers (the original SPD pioneer).  There is information about current research, including the study that Scott participated in.  But the primary focus, just like the New York Times article, is on whether SPD is actually a valid disorder.

While I am thrilled that SPD is getting such high-profile media attention (Time Magazine! I have been a loyal subscriber since I was a teenager!), I am concerned at the negative slant to which it is being portrayed.

Once again, the question seems to be:  Are parents making up a problem where there isn't one?

And to that, I would like to say, simply, why on earth would someone want to label their child as having a disorder if they didn't have one?  Now I get that everyone has different sensory reactions and thresholds and I am fully supportive or the idea that having these differences does not necessarily mean that there is something wrong with you.  But.  BUT.  I think, if you interviewed every parent who has a child that has been "diagnosed" (in quotes because it is not official, DSM-V certified) with SPD, they will tell you some story of serious issues their child has had.

Not simply that their child won't eat broccoli or doesn't like tags in their clothing.  But issues that impact them and their family.  Things that do not fit into any other category.  People who have no other explanation for why their child is suffering so.

Remember when nobody believed in ADHD?  Remember when the idea of a child having Autism was limited to the Rain Main version?  Times change, information is available and views need to be altered. 

I would like all teachers and professionals that work with children to be educated on SPD.  To learn how sensory strategies can help them to provide a better environment.  For all children.

Most people assume that if Scott is riled up that he needs to just run around and blow off steam.  But that often makes him even more out-of-control.  Until I understood his need for proprioceptive input I would have agreed.  Now we make sure the activity includes lots of heavy work or even go the opposite way and sit close on the sofa, wrapping him up in a blanket, giving him something to chew on to calm him down and ground him.  This is one example of how much our perspective has changed since learning about SPD.

Yes, I'd like SPD to be included in the DSM-V.  I also think that understanding how our senses impact us can help anyone.  It is like the Myers-Briggs personality study.  If you are aware of your personality type and that other people have a different perspective, it makes you better equipped to work with everyone. 

I wish that the article was more comprehensive.  I appreciate the side bar "Making Sense of Your Senses" that gives four different types of sensory profiles (like the Myers-Briggs thing).  But I am concerned that people won't realize how serious of an issue this can be.  Sure, you may "laugh about your husband only wanting to wear one brand of socks", but will you be giggling when your toddler screams bloody murder every time they go outside in the sun?  Or how about your child who cannot tolerate having their teeth brushed?  Or the four-year old who tackles everyone and gets kicked out of preschool, is labeled a "bad seed", and subsequently develops into a troubled, suicidal teenager?

I am formulating my letter to the editor right now.  Any thoughts on what I should say?

Comments

[Jen P]

Hey, my first visit to your site. Our whole SPD family can appreciate other people's respect to our sensitivities.

The Hub is a runner/triathelete.

[Casdok]

Good luck!!

[kyra]

listen--i think you've said it right here! i've had similar reactions to reading articles on autism and aspergers--sort of shaking my head at the superficial treatment it gets in a few pages or less. but you're right, at least now the ASD diagnosis is given legitimacy. i hope the same will happen with SPD. lord knows the challenges our kids face are real and impact every aspect of theirs, and our, lives.

[Maddy]

How come I can't get your blog onto my blog feed reader? [it tells me you don't have a feed? - surely that can't be right?]
Cheers

[kristen]

Okay, so I'm a little late to this discussion, but I just read the article in Time. And yes, you should write a letter.

I think that hearing from parents who are living this, serves as tremendous reinforcement for why the system for diagnosing SPD needs to be changed and why we need to promote greater awareness and better understanding of this disorder.

Let us know what you decide to do. Post your letter here too? Just a thought...

[Lori at Spinning Yellow]

Thanks for you suggestions everyone!

Dee - Just b/c I have a lot to say does not mean that I say it eloquently!! Or that it will be good enough to be published!

[Laura]

I am putting Time on my grocery list. I recognize alot of what your are saying in Dallas-he LOVES to be cacooned up in a blanket in front of the fire place and rocks back and forth-I see how it is comforting for him at the end of the day, whether that be a school day, football practice or outside playing, climbing trees,etc. It makes so much sense to me and I am guilt ridden b/c I haven't been onto this a long time ago. Anyway, the first thing I said to myself when you asked for ideas, was to forward this post. You are so very equipped to back up all you have to say. Thanks Lori for educating me.

[Dee]

Lori,
I think it will take many people like you and the researchers mentioned in the article to give this "disorder" the exposure that it needs. You are already on your way. I didn't find the article itself to be negative; it was the title and the last sentence that were a touch on the negative side. You always say that you have a lot to say-- I know that you will put forth a compelling response.

[delilah]

I knew you would tackle this article when I saw a summary posted on one of the listservs I belong to! As for your letter, I'm with Julie. Back up your anecdotes with research. Use examples that clearly showcase that some of the behaviors associated with SPD go beyond the wide spectrum of "normal". That SPD is more than someone just wanting to wear one brand of socks. That SPD impacts a person's day-to-day functioning, social interactions, etc.

[slouching mom]

Yep, I agree with Julie. With a bit of editing, the post could easily serve as a fantastic letter.

[tulipmom]

I'm adding the current issue of Time to my shopping list right now. Thanks.

[Julie Pippert]

First...I bought Time (Dec 3) off the rack yesterday because of that brain article!!! I don't find the article you mention, and I'd like to read the whole thing because boy do I have a few thoughts about replying to a "is it real?" question if they slanted toward "no."

I think you definitely need to lean heavily on facts. IMO, start with your personal story a little---some of what you did here---and back up the anecdotes with facts.

And I think your ending about what needs to happen is great. In fact, this post is a pretty good letter to the editor.

GL writing the letter and thanks for the heads-up!

Julie
Using My Words