I received an email today from a parent who proclaimed excitedly to our ASD listserv that his three-year-old -- who had received a pdd-nos label two months ago -- was now no longer within the diagnostic criteria for an autistic spectrum disorder. This child apparently had gone through at least two different evaluations (at different centers.) "Good News!" the email had read, along with sentiment like "Don't worry; I'll continue to stay involved for all you folks whose kids really have autism..." He also mentioned that his child needs speech therapy and social-skills enrichment. But he's not autistic!
Of course my head exploded into a million little pieces.
Autism is not binary. There is a reason that spectrum disorders are so called: it is a spectrum. Kids are not either "normal" or "not normal." Kids can have characteristics of a bunch of different "disorders" but not actually reach diagnostic criteria (the "shadow syndrome" effect
There is a child in the Cat's class who is on a gluten-free diet for Celiac Disease. Because of his diet, he would test negative for Celiac's. That doesn't mean he doesn't have it - just that he isn't showing symptoms of it. Similarly, a lot of kids on the spectrum or with other behavioral "disorders" may present completely neurotypical one day, and affected the next. When kids are taught, disciplined, and supported in the way that is most effective for that particular child, then they will appear different than a child who might not be in the right environment or on the proper diet. But that doesn't mean that one child "is autistic" and the other child "does not have autism," necessarily.
The culture of diagnosis is rampant. I don't know what prompted this particular parent to seek diagnosis for his son. I don't know whether it was an overly-energetic pediatrician or one of those "gut feelings" that "my kid isn't quite like his peers." I don't intend to criticize this particular situation - but the email I mentioned earlier certainly started me brainstorming. If it was the former, I really wish pediatricians (and educational professionals) would back down from the idea that every little deviance is some horrific situation. And in the case of the latter, if a parent has an inkling that perhaps his son needs a little extra help, then how does the existence or not of a label confirm or deny these suspicions?
In this case, the child still needs some speech and social-skills assistance. As many have commented to me before, the label can open doors to receive that assistance. On the flip side, the absence of the label has suddenly "excused" the parents from that "gut feeling," but at what cost? If their child still has speech and social needs, then why does it matter whether it is "autism" or not other than the possible predictive nature of such a label?
Besides...
A label is not a predictor of future behavior. Or at least, it shouldn't be. Kids diagnosed on the spectrum, with AD(H)D and with those other childhood "disorders" end up looking very different at 7 than they did at 4, than they did at 2. Kids with the same diagnosis at age three could have completely different presentations just two years later. Once puberty hits, anything can happen. I've heard anecdotes either way: puberty causes chaos and "more serious" disorders or puberty "cures."
Autism isn't what you think it is. More than anything, I suppose the email today got me in the stomach because of the underlying message of "Whew, thank goodness he doesn't have autism." Maybe he doesn't. Maybe he has some delays that appear kind of like autism now, but will be completely resolved when he is older. Or maybe when he reaches Kindergarten it will be apparent that he is very behind his peers and will need help to "catch up," perhaps snagging an autism or AD(H)D-like diagnosis in the process. But what did this parent believe autism is? As I mentioned before, what is the difference between someone who is both social and speech delayed and someone with autism?
I've met plenty of quirky kids who have no official label, but who I am certain would "meet criteria" if they were ever formally evaluated. If their quirks don't impede their day-to-day life, then it doesn't matter. But if kids like this get a teacher with a particular teaching style or expectations that don't mesh with their learning mode, then... well... fingers crossed.
Whether a child officially has the pdd-nos diagnosis or not doesn't change his behavior. It doesn't change who he is. It doesn't change what assistance he may need (or not.)
Many people say to the parents of the newly-diagnosed, "Remember your child is the same child he/she was before he/she received the label." Indeed, it is the same if a child fits the diagnosis for one clinic but doesn't in a different clinic: the child remains the same.
So yes, "good news" that the child subject of the email today "doesn't have" autism according to one source. But to that parent - your child is the same whether he has the label or he doesn't. If he needs some speech therapy, by all means go ahead. If he needs some social-skills strengthening, support him in that. But don't assume that your child is "normal" and that those who do meet a spectrum diagnosis are "not normal."
Kids' behavior isn't binary.
Comments (12)
Fantastic post, Kari. So cogent, smart and compassionate. I feel that same way, but I also understand the desire to avoid the inevitable pathologizing that comes with a dx. It's tough either way, but however the parents choose to think about it, I hope they continue with services.
Posted by Susan E | September 16, 2008 8:04 PM
Posted on September 16, 2008 20:04
Kari, you continue to be a voice of clarity for other parents struggling with this. It's all true - your kid is the same, diagnosis or not. It's what you DO with the information you gather about your child's weaknesses and strengths that matter. This really hit home for me, once again. Thanks.
Posted by Velma | September 16, 2008 8:07 PM
Posted on September 16, 2008 20:07
You're so right, Kari, that whether a child has a label or not, he/she is still the same child. This post is a great reminder to not get caught up in the alphabet soup of labels.
Really, it only matters when you need the diagnosis to get the help you need. Otherwise, a label doesn't really do much.
Posted by Christina | September 16, 2008 8:35 PM
Posted on September 16, 2008 20:35
Denial is more than just a river in Egypt, huh?
Just because this man's son isn't Rain Man doesn't give him license to insult the whole ASD listserv. I'd feel sucker punched, too, Kari, and I wouldn't be quite so articulate about it. ;)
Posted by DiVaughn | September 16, 2008 9:36 PM
Posted on September 16, 2008 21:36
In case it isn't clear (I thought it was, but have been emailed privately for clarification) I am not claiming that this child *has* autism or that he *doesn't* have autism. That isn't the point.
Rather, this situation brings to mind the issues I raised in my post:
- when is early diagnosis truly appropriate?
- when are behaviors/needs worthy of a label?
- how is the perception of autism part of the puzzle for the first two questions?
Posted by Karianna | September 16, 2008 9:47 PM
Posted on September 16, 2008 21:47
I totally agree. And will it be "good news" if at some point his child doesn't qualify for some great program that could have benefited him tremendously? Hm.
Here's another angle: There is a wonderful child in DuckyBoy's first-grade class who is as good a reader and as smart as DB (maybe smarter--gasp, did I say that? lol) and is obsessed with trains and does not have a diagnosis of any kind. And you know what? I see how much easier the socialization piece of life comes to him, and am happy for him; he does not need the services DB needs to guide him along that part of the school path. The funny thing is, his mom has the SAME questions for the teachers some of us ASD moms do here at the beginning of the year -- what are they doing to stimulate the smart kids? When will you do the reading level evals so they can get books that challenge them instead of bore them?
In other words, I've come to the same conclusion as you: Basically, we are ALL on a spectrum-- dx or not.
Posted by janny226 | September 17, 2008 4:54 AM
Posted on September 17, 2008 04:54
What everyone else has already said. Amazing post :)
Posted by Robin | September 17, 2008 4:58 AM
Posted on September 17, 2008 04:58
"I really wish pediatricians (and educational professionals) would back down from the idea that every little deviance is some horrific situation.". Nail on the head.
Even with 'mental health' professionals the labeling and the misguided ideas of the black and white edges of diagnoses is a huge problem. Aren't they supposed to know about DEVELOPMENTAL issues- meaning things change constantly? I work with an adult never diagnosed with anything, just accused of being "difficult", and we have learned to sift what we can the neurological/hard wired issues from the psychological/learned/personality issues and then integrate them into the uniqueness that is her. It has been a learning experience for me.
All difficult behaviors are not diagnoses and teachers/professionals/parents need to learn to meet a kid where they are at. Some adjustments need to be made but wouldn't the world be a better place if we all got the adjustments we needed for happiness and comfort? Sorry for the long comment... glad I found you!
Posted by starrlife | September 18, 2008 9:26 AM
Posted on September 18, 2008 09:26
"I really wish pediatricians (and educational professionals) would back down from the idea that every little deviance is some horrific situation.". Nail on the head.
Even with 'mental health' professionals the labeling and the misguided ideas of the black and white edges of diagnoses is a huge problem. Aren't they supposed to know about DEVELOPMENTAL issues- meaning things change constantly? I work with an adult never diagnosed with anything, just accused of being "difficult", and we have learned to sift what we can the neurological/hard wired issues from the psychological/learned/personality issues and then integrate them into the uniqueness that is her. It has been a learning experience for me.
All difficult behaviors are not diagnoses and teachers/professionals/parents need to learn to meet a kid where they are at. Some adjustments need to be made but wouldn't the world be a better place if we all got the adjustments we needed for happiness and comfort? Sorry for the long comment... glad I found you!
Posted by starrlife | September 18, 2008 9:27 AM
Posted on September 18, 2008 09:27
I've often heard of kids with autism who, as they got older, were told they "no longer have autism" because their behavior, sensitivities, social skills, etc have improved so much. It doesn't really make sense, does it? Like, thats awesome that the kid is doing so well right now that his autism isn't creating lots of problems for him... but I think the autism is still there, forever, isn't it???
Posted by Nicki | September 18, 2008 1:21 PM
Posted on September 18, 2008 13:21
I am doing a clinical rotation in a public high school right now that also has a program for cognitive and behaviorally challenged students. Just today we were talking about a student who's "diagnosis" had changed from autistic, to aspergers, to pdd-nos. What I really liked about the group at this meeting (school psych, social work, nursing, guidance, iep coord., etc) was that everyone thought that it was a stupid change; this was the same kid he'd been before. Yes, with work some of his social skills have improved. But he's worked damned hard to get there. So even though his "label" had changed, they were really focused on making sure his goals and supports didn't. Awesome post.
Posted by Anne | September 18, 2008 8:08 PM
Posted on September 18, 2008 20:08
At age 3 my son was given a PDD-NOS diagnosis. My first thought was that we would give him every therapy we could, work really hard and then he would "test out" of the diagnosis. I wanted him to be able to go to school without a lable. I didn't want people to make assumptions about him based on a lable. Now my feelings about this have evolved. He is now 4 and his therapies have been very successful. His speech therapist wants to discontinue therapy because he has met his goals and I doubt people meeting him for the first time would think he is autistic. Despite all of this progress the underlying issues are still there. Now I worry that if he goes to school without the lable that they may see him as a behavior problem rather than a child with a diagnosis who occationally needs some assistance.
Posted by Jeni | September 24, 2008 10:47 AM
Posted on September 24, 2008 10:47