For what it's worth, DS was diagnosed with NVLD at age nine. At the time, I knew nothing about it, and as I read about it, I wondered if the diagnosis was accurate (we suspected autism and already knew of other issues before then, including ADHD). By age 11, I could see it clearly, and by age 12, it is so completely obvious that I wonder that I ever doubted it. That pattern is typical.
I would argue that it does matter whether it is NVLD or not. Knowing about DS's NVLD is hugely helpful as we deal with his academic and other issues, because it allows us to dig in and understand better the root problems.
When you have your evaluations, be sure to ask for social to be included, if you have not previously. With NVLD, the social issues tend to worsen with age and impact both employability and personal relationships. Getting social skills therapy was at the top of our list of DS's needs, even though he has academic LDs as well.
Two other things to consider -- ADHD and NVLD are not mutually exclusive. Treating DS's ADHD makes a huge difference for him and our family. Secondly, many believe that NVLD should be on the autism spectrum, and some practitioners would diagnose ASD in addition to or instead of NVLD, since NVLD is not in the DSM. Getting an autism diagnosis instead of an NVLD diagnosis could result in additional services and/or funding for therapy, so it is something to consider. (Even with an ASD diagnosis, knowing that NVLD is involved is important for targeting intervention).
Anyway, DS is hard to live with, and it can be hard to feel affection. It is just so wearying as a parent, because behavior changes often don't happen, despite our best efforts over a long period of time. My own reserves get depleted, and it's hard to pour more out when it doesn't seem to make a difference. It can be very challenging, and I try to work to find ways to replenish myself so that I can offer more affection.
That's interesting that the NVLD became more obvious as he became older. Like I mentioned above, when the school psychologist first mentioned it, I was like, "Nope, you really don't know this kid well. At all."
Here are some of the symptoms and where she ranges:
Visual and spatial awareness:
Many kids with NLD have trouble understanding visual imagery. For example when they are asked to copy a shape like a cube they produce “profound distortions,” says Bezsylko. “These kids can’t accurately perceive the cube, the forms that make up the cube, and the relationships between them. Hence they can’t copy it.” (This is my kid, to a T....she is a lot better at this now, but as a preschooler and early grade school? OMW!)
They also have difficulty evaluating visual-spatial information. This means they have trouble grasping the relationships between things they see and having a clear sense of where they are. This can make them physically awkward. (Also my kid...then and now).
2. Higher-Order Comprehension:
Higher-order comprehension is the ability to identify the main idea in something, the details that support the main idea, and the relationships among them. This affects kids’ ability to comprehend reading, and write or tell a story effectively. DD DOES struggle a little with this. But she scored 74th percentile on her STAR Assessment in Language Arts last summer, and her reading comprehension is...*ok*. Depending on the difficulty of the text. Her writing ability is very poor...and her writing is usually way off topic. She needs much scaffolding here.
3. Social Communication
Most kids with non-verbal learning disorders have trouble reading emotion in facial cues and body language, so they often don’t know what’s going on in social interactions. They miss the social patterns that other kids pick up automatically, so they don’t know what’s appropriate behavior in a given situation. This wasn't really an issue until the last year or so. So far, I do not think DD is aware that the other kids in her peer group are distancing themselves. Then again, she has mentioned a few times that one particular friend (one she's closer with), hasn't been talking to her recently. But I don't think she's picking up on some of the looks of, "What did you just say" that I'm seeing when I observe her interacting with peers.
Difficulties with social communication is one reason why kids with NLD often focus—sometimes obsessively—on technology. “In chat rooms or in a video game they don’t have to deal with all the nonverbal stuff,” Bezsylko notes.
4. Math Concepts
Many kids with NLD are very good at rote learning, and they are able to do well in math just by memorizing data. But as they get older they struggle to solve more advanced mathematical problems that are based on recognizing concepts and patterns. Even with a problem they’ve seen before, if it’s approached differently or modified slightly, they have trouble recognizing it. No see, DD has ALWAYS struggled with math. Pretty much with all of it. She DID memorize her skip counting and times tables pretty readily though so...there's that.
5. Executive Functions
Executive functions are a set of skills we use to organize our thinking, plan and carry out actions, and figure out how to solve problems. Most kids with NLD have weaknesses in these organizing and planning functions. For instance they struggle with breaking down a project into smaller pieces, or conceiving steps that need to be taken to get something done.
“These kids have trouble figuring things out—in fact they don’t really know what figuring something out means,” Bezsylko says. “We have to help them learn to do that—the step-by-step process you go through.” I remember when this child started to crawl, and she approached an obstacle, often, she could NOT figure out how to get around it. She would just keep on trying to go THROUGH it. It was one of several things I mentioned to the Ped. I remember telling her, "I don't think this child can problem solve. At all!" And she told me it could be completely normal, this was a toddler, etc. But today, this is still a problem. There is simply no executive planning in this child's head. Is it from NVLD, or is it just plumb inattentiveness? I don't know!
And on other websites, I found this list...
Signs and Symptoms
- Has trouble recognizing nonverbal cues such as facial expression or body language (possibly)
- Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects (always has to be leaning on something...not just a little either. All out LEANING)
- Using fine motor skills a challenge: tying shoes, writing, using scissors (Yes...learning how to write was so difficult for her. She could not remember the directions the letters were supposed to go. Scissors...very difficult. Tying shoes....same. She still puts her shoes on backwards, btw. Overall, she has mastered most of these things at this point. Her writing is ok when she is focusing...but when she is not, her letter and word spacing is terrible. Her letter size is inconsistent).
- Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy (She would be lost or tardy if I allowed it...but the rest of this, no, she doesn't need to verbally label...as far as I am aware).
- Has difficulty coping with changes in routing and transitions (absolutely not...she goes with the flow...probably wouldn't even notice the change)
- Has difficulty generalizing previously learned information (yes. She does not generalize well at all. Her learning is very compartmentalized).
- Has difficulty following multi-step instructions (yes. But I'm not sure if it's due to inattention).
- Make very literal translations (She certainly can...as in...give the big chickens the water from the little chickens (except...not when it's frozen!)
- Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson (No, not really.
- Imparts the “illusion of competence” because of the student’s strong verbal skills (No. Not at all. Her verbal skills are average, but a lot of time she says things that she doesn't actually mean. I can't explain it...but her words do not often match her intent. Interesting side note, when she was first assessed at 3 1/2 yrs old, her verbal language faaaaaaaaaaaaaar exceeded her receptive language and her receptive language development was pretty far behind...so not sure how that plays in).
Other areas that do not fit her...
Humor and sarcasm...she does not struggle with this. In fact, she uses sarcasm quite well, lol.
She does not lack meaningful friendships...she has a couple of really good friends. But, as we enter puberty, that may change, as one is already starting to distance herself.
She DOES struggle with jigsaw puzzles. A lot, a lot...lol. She's gotten much better though, but for the longest time, she could not figure out how to orient the pieces.
So I don't know. She's a complicated kid, lol.