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.

Thursday, October 1, 2009

Just Asking, Part I

What does PDD-NOS look like in an adult? Where are the support groups for PDD-NOS (support for those who have it and parenting support)?

I know what asperger's looks like in an adult. For starters, I worked with one once. Interesting story, but I won't get into that here. Also, there are plenty of media depictions of adults with asperger's. Look up asperger's support, and there are several centers throughout the region that I live in.

But PDD-NOS? Nothing. My hypothesis: an adult with PDD-NOS probably identifies as "autistic" as an adult. (Or typical. Or asperger's.) Which is true, because PDD-NOS is on the autistic spectrum. So perhaps an adult who was diagnosed with PDD-NOS as a child and whose diagnosis "sticks" will identify as autistic and seek out support through autism support networks. Likewise, there is little by way of parenting support specific to PDD-NOS.

Another hypothesis: "PDD-NOS" is a label so meaningless that no one - not even those who have it - want to use it.

Of course, there are a lot of autism support groups and resources for parents. But as I learned early on, and much to my chagrin, "if you've met one autistic person, you've met one autistic person." Finding that commonality is challenging. I'm sure parents of children from every corner of the spectrum can relate to that sentiment.


Kris said...

Interesting esp as my son has been formally dx with ADHD/SPD and we've been told informally he "probably has PDD-NOS". The school has given him an ASD dx for IEP purposes because "SPD isn't a valid diagnosis".

Here's my best guess: Many adults with PDD-NOS identify with either autism or Asperger's, depending on their symptoms. I think many PDD-NOS kids (and adults) are really like those with Asperger's except they had a speech delay - does this distinction matter as an adult? I think not.

If an adult has SPD (and there is a website dedicated to adults with SPD) I think it is probably similar to adults with ADHD. There is probably some struggling but over time you learn to compensate. As I have read the signs/symptoms of SPD in adults, I see that I have many, many of them! Do I consider myself to have SPD? No. Because the symptoms I have don't interfere with my daily life. I make compensations for the things that I have a hard time with or that bother me.

I recognize my son has more obstacles than most. He struggles with social interaction, has constant need for movement, can't always stay focused, says inappropriate things b/c he has no "filter" and sometimes gets "stuck" on a theme. However, he has made SO much progress, esp over the last 2 years. If he keeps making this much progress, I think he will be able to compensate for his "disorder" - whatever it is.

I hope I can look back and be amazed at how far he has come from nonverbal special ed preschooler to fully functioning adult. I have not given up hope that he will not have or need a "label" when he is an adult.

And I agree PDD-NOS is basically a worthless dx. It can mean anything from a severely (even nonverbal) affected child whose symptoms aren't in the right "configuration" for an autism dx or a child who has a few autistic symptoms. There is a lot of gray area between ASD, ADHD, and SPD and I think this is where PDD-NOS falls - if all else fails, give the PDD-NOS dx. I read somewhere (???) that there is no real difference between severe ADHD and mild ASD. To me, this is a problem, because the core deficits of these 2 disorders are so different. I don't know why the ASD dx is being given out so willy-nilly. I am one of those who believes (after reading The Mislabeled Child and several of Greenspan's books) that the ASD label is handed out too liberally. I have read on message boards about some ASD kids being "social" and "outgoing". What??? The term "autism" literally means a turning inward to self. Since when are outgoing, social kids labeled as autistic? There has to be a point at which you say, "Yes, there are autistic symptoms, but this child is not autistic."
Ok, I will get off my rant.
Thanks for the thought-provoking post!

Kris said...

If you are interested, the adult SPD site is www.spdlife.org

Laura said...

Kris, hey, thanks for the link. Well what do you know, SPD adults exist. LOL. As for the liberal application of ASD, agree that it has become liberal. My takeaway is a bit different though.

Brenda said...

Hi, Laura, Can I gently ask: what is it that you're looking for? Do you want to know what your son will be like as an adult? Totally understand ... I've done that, too. But there's no way we can know and it doesn't matter what dx our children have. None of us have a crystal ball.

Or are you looking for a group that you can share with? I will say ... this was the most helpful thing for me. I didn't find a group of parents who had the same dx, though. I found a group of parents who were experiencing the same emotions: fear, frustration, hope, stress, dreams. And that's where the commonality is ... in the things we are going through, the emotions we feel. In our humanity. In how we want our children to be treated. For me, that's more important than the same dx.
Hoping you find your support group IRL. You'll always have one here. ((hugs))

Laura said...

Brenda, both good questions. Yes, there's that part of me that wants to hit the fast forward button and see what Brad will be like. I try to suppress it but it's there.

And as for support, I don't even know. I can tell you what I don't want: keeping up with the joneses, and feeling defensive about Brad, so that rules out some of the typical mom circles. By the same token, I can empathize with, but not directly relate to, many of the struggles of parents of autistic children. Does that make sense? But your points are well taken. Plus, I think I have asperger envy. You know, there's so much organization and support there, and there's an acceptance and even a pride there, values that I like.

father of four said...

Thanks everyone for your insight into all of this.

Having just found out that our 10yo son has SPD - how was that missed when the opening statement on the multi-disciplinary assessment 4 years ago was his parents "have some concerns regarding sensory issues"? It has taken all this time to find someone who knew enough about SPD to diagnose it. Same child, same sensory issues, just with a lot more defensiveness and associated problems now.

A year before that he was assessed as having "above average" expressive and other language skills after going through intensive speech therapy, early intervention units, etc. before he started pre-school. A major improvement from when he was 2 and not saying anything at all. Same child, after a lot of intensive therapy for his "dyspraxia".

Now in year 4 at primary school, he is at least 2 years behind his peers, maybe more. We are in the process of having him assessed as PDD-NOS, even though previous assessments have ruled out ASD (including Asperger's due to speech delay). What's the difference? He hasn't been getting the support he needed at school (or elsewhere for that matter). The PDD label, as much as it frightens me, will help with that.

What will he look like in 5 or 10 years? I really don't know, but I am pretty hopeful about this. It's a roller-coaster though. I reckon the therapy he is getting now will make a big difference. Certainly he's happier most of the time. Getting the right support at school should also mean that he is able to learn again. I'm convinced he can do this. It's not easy though.

Kris said...

Hey Laura,
Since I really respect your opinion and can tell you know your stuff, what do you make (if anything) of the latest autism numbers - 1 in 91?

I know this is off topic and maybe something you are planning to do a post about, but just wondered if you had any thoughts.

Laura said...

Father of Four, thanks for sharing, and I like that you're optimistic. I'm unflappably optimistic myself, and I'm not even sure why. I think the more you understand, the better-targeted the treatment, the better you feel about the future.

Kris, yeah I saw that. The consensus is that the 1 in 91 figure is not entirely reliable because it was a phone survey or something like that, and that the increase is attributable to diagnosis and the liberal application of the label. Does it make me angry or roll my eyes? Not really. But from a policy perspective, I do think there's an issue of just distribution of resources when the net is cast so wide. In other words, I doubt that the children who need resources are fully-served, and probably some children who don't need significant interventions are being over-served. Anyway, I'm rambling. Is the fix to make the net less wide? Or is the fix to be a little smarter about prescribing interventions? I tend to think it's the latter so that the mild side isn't siphoning off valuable resources. What are your thoughts?

Kris said...

You know, I don't know what to make of it, that's why I asked you!(: However, I did note that it has gotten almost NO press while the swine flu has taken over the newscasts! It doesn't have me "up in arms" either. I really think many kids with other disabilities are being given an ASD label. I have really become a fan of Stanley Greenspan and he points out how many kids are given an autism label that don't really have have autism.
That's not to say I don't think there has been an increase, I do and I sure hope they find what is causing it! I find it frightening and wonder if we will see spikes in other brain-based problems in this generation like Alzheimer's, etc.
As for services, I don't know much about how services are doled out. I know I had to fight tooth and nail to get Alec an IEP and he really does need one at this point. We pay out of pocket for all his services (he has speech and OT privately)- he gets no therapy at school, just has goals that need to be met mostly involving paying attention, staying on task, and socialization. I think it is hard for most people to get services. We actually had to cut back on his services b/c we can't afford all that was recommended - and my husband makes a good living so I don't know how others do it. Our insurance doesn't cover "developmental delays" which is a whole other thing I could get into but won't. Take care!

Nyx said...

Oh, you know how your post made me want to cry. I LOVE your blog because for me you are IT. I have been through this so many times in the last 7 months (wow, I can't believe it's been such a short time, it feels like 7 years since dx) I no longer know what to believe. I think the dx is mostly bs. I found a book at the bookstore that involved pdd-nos dx and it gave me some hope. I can't remember for sure if I have different books mixed up but I think her son is in college now and sounds like he's doing ok but has challenges. I didn't buy that book. I bought another book that features a little boy with pdd-nos called act early against autism by jayne lytel -- it's pretty interesting. At the end of the book her son is 8 and has achieved all of the floortime milestones and while he still has issues seems to be doing awfully well. ON the other hand, one of the partners at my firm has an 18 year old with pdd-nos dx, though, and he says it has impacted his cognitive functioning, I guess college is not an option for him. his son wants to join the military but Dad says no way the military will take him. He's worrying about long-term care, because he does not believe his son can be self-sufficient. that was a hard blow and depressing. I keep looking for the crystal ball. I got excited the other day because my son said "I love you" ... SPONTANEOUSLY! But at almost 32 months we're not really having real conversations like I am with his twin brother. I say "who were easter bunny's helpers" and although he knows their names he answers "carrot." I used to obsess over language and now I obsess over reasoning ability. this past week I've been trying to figure out how come nobody talks about what the milestones are that lead to reasoning ability. do you think language and reasoning are synonomous? I don't think I do anymore. Sorry for the ramble. But sometimes I do think this: that (a) there are too many links between autism and motor issues, and my son has the latter for sure (and I think since I've focused on those there have been collateral improvements in other areas, by the way); (b) the eides say that both spd and autism involve problems with long-distance connections, I think it must be those fast-spiking interneurons; (c) it does seem sometimes like my son although sweet and affectionate, has these kind of jumping random associations between things rather than ... I can't describe what I want to, but appropriate categorization comes to mind. It also makes me wonder ... what would he have been like WITHOUT the intervention? How easy would it have been for me to LET him tune out? would he have seemed more autistic? Long before the dx, I was doing all the heavy lifting in his development. It was like I was doing floortime and didn't even know it. I'm sorry this is more of a ramble even than usual. someday I'll get it together to start my own blog. Maybe one of us should start a website devoted to PDD-NOS. (ps -- did I tell you about the blurb I read that they used to dx kids like mine anyway with a combo of adhd and something related to motor?)

father of four said...

Hi Kris. I don't know if this helps, but we are finally getting the kind of support that I would have expected through the Education Department. It has taken far too many years to get this. Getting the right people involved is making a big difference. Also, I am no longer accepting lines such as "there's nothing we can do", "you need to lower your expectations", "we don't have the resources to do that", "we can't make exceptions just for him" or worst of all "there's no problem". The Department's autism consultant is getting involved now and I didn't even know that these people existed a few weeks ago. I have also found out about what an IEP should look like and will demand nothing less in future. At the end of each year I have gone to the school to ask his teacher and principal to manage the transition to his new class. At the start of the school term I have talked to his new teacher only to find that there has been no handover. His teacher this year wasn't even aware of all the assessments that had been undertaken. Now I know that's not good enough I can make sure it doesn't happen again.

Laura said...

Nyx, thanks, and I totally relate to the random associations and I too think about intellectual disability. When Brad is a few years older I want to get him a full neuropsych workup, including IQ and eval for learning disability. on your ps, say wha-ha?

father of four said...

Sorry, Laura. I'm probably the worst offender for opening old threads, but thought it was worth leaving a postscript for this.
The clinical psychologist who assessed our eldest son recently recommended his paediatrician consider the diagnosis of PDD-NOS in the "absence of any other possible explanation for his difficulties (e.g. a rarer genetic condition)". As it turns out, he does have a rare chromosone disorder which underlies his condition. So now we know.
I also met with his new school to review his IEP today and they are doing a wonderful job. Very impressive and quite touching. So we had quite a mixed day really. :)