Unscrambling the jargon to help you make informed choices

Your child is not keeping up.  What to do?

Getting a learning diagnosis is traumatic. The terms are scary and it feels insanely complicated. You have friends who have done it, only to come back with an impossibly long list of deficits, and now they feel even more at sea.  And of course, it impacts your child – he is now labelled and knows there is “something wrong.” with him.

The school says they have it handled, but you are not so sure. You hear stories of kids who started off slowly but then everything just clicked.  And stories of regret, parents of older children with lingering reading or learning difficulties, who wish that they had taken action earlier.

Which story will be your child? Is there a way to know?

There are a number of misconceptions and misunderstandings about the nature of a learning diagnosis in part encouraged by most of the folks you reach out to for help, who are in the business of finding deficits and naming things. Before you make any decisions about next steps for your child – an evaluation, an intervention, tutoring, nothing – here are a few thoughts that might help.

  1. There are very few actual learning ailments, mainly just symptom descriptions
  2. Most lists of diagnoses come back to one source issue
  3. There are only two primary sources of learning delays – language and sensory processing
  4. Trust your instincts
  5. Accommodations and interventions – very different choices

#1. A learning diagnoses is a description, not an ailment

Almost all learning diagnoses, e.g., dyslexia, dyspraxia, Asperger’s, are descriptions of behavior. Unlike a medical diagnosis, where the symptoms are used to find a problem which can then be treated, in the learning diagnosis world, the symptoms are the diagnosis.

More than that, the same type of behavior can be labelled differently depending on severity or frequency of symptoms.  For instance, when a generic “reading difficulty” is more severe it is called “dyslexia.”  Dyslexia is not an ailment or specific problem, just a more serious reading delay.

Yes, dyslexia can be detected a functional MRI – the indication being a lack of activity in the language region of the brain while reading. This is true however also of children with lesser reading difficulties – their fMRI’s show insufficient activity in language areas.

This is important to understand.

Part and parcel of a medical diagnosis are identifiable germs, etc. that have treatment options. For example, treating an underlying infection may involve some art, but it is mainly based on science.  Learning diagnoses do not work that way.

A learning diagnosis might identify related issues that help identify the underlying problem.  And in the vast majority cases, the learning diagnosis confirms 95% of what parents already know or suspect. Reall, all you come away with is a description of behaviors, most likely with proficiency against norms.

Better than nothing, but still not a treatment plan.

#2. Multiple diagnoses are most often not

You pay, in most cases, a significant sum of money for an assessment.  Clinicians want to give you value for money, and so they list every possible diagnosis they can find. But remember, diagnoses are descriptions of behavior. Each diagnosis does not necessarily describe a new problem, it’s just a description of different behavior.

It’s not unlike a child breaking her ankle.  A doctor would examine and diagnose a broken left ankle. A learning assessment-style diagnosis would focus on behaviors — the child cannot walk, the child cannot jump, and the child cannot balance on her left foot. These are different behaviors, but really, there’s just one problem – the broken ankle.

And how often have you read quotes like this?

About 50 to 60 percent of people with ADHD also have a learning disability.
ADDitude

Really, two separate issues?  Couldn’t it also be true that if you have APD and have trouble hearing the teacher, you will tend to be a little inattentive? And if you find reading torture, you might want to get up and do something different? Symptoms of ADHD, yes, but unlikely to be a separate problem with a different underlying cause.

And finally of course we have the current propensity for over-diagnosing everything these days. Around 11% of kids between 4-17 are diagnosed with ADHD,

The bottom line is this. In most cases, there is one source problem that you should focus on. For instance, in the quite common dyslexia, ADHD and language processing triple header, processing is the source issue.  If you can resolve the most deep-seated source issue, more often than not, the other behaviors will take care of themselves – not overnight, but over time along a normal development cycle.. Once a child’s processing improves and he can hear the teacher, his attention will improve.

#3. There are only two primary sources of learning problems

When you get into why a child is lagging, there are all kinds of factors that come into play.  Listening to language, learning and reading are all amazingly complicated. Really, they are miracle skills that require so many things to go right. While there have been 40+ separate cognitive skills identified, many are related.  Most learning difficulties can be traced back to delays in two broad areas:

  • Language processing
  • Sensory processing and integration

Again, there are nervous conditions, personality traits, seizures and countless other variables.  However, the reason these two come up time and again is that both are foundational skills for all learning and both are amazingly complicated.

Language Processing

Language processing is the foundational skill for listening, speaking, thinking (we think in our native language), reading, writing and learning comprehension and reasoning.  For all of these skills to function properly, language processing has to be not only 100% accurate, it has to be automatic.  It is a background skill that allows the mind to notice, comprehend, and analyze – to process.

However, that’s not easy. Language is lightning fast. Hearing and manipulating the sounds inside every word requires processing at a rate of 40 sounds per second. If this is going to be an issue for a child, it can show up in speech issues or rhyming at 3 years of age.  Rhyming is the first time a child plays with sound, hears it and analyzes it, which is why it’s such a famous predictor of future reading skills.

Processing and natural language speed is a skill that less than half the population achieves by the age 8 years of age, when they need it for reading. This is why such a large portion of the 4th grade population reads below grade level.

Sensory Processing

Sensory processing is the second category of miracle skills. The brain has to take in information from all senses, processing it all in a flash and then respond. If there’s a timing issue, e.g., if vision and hearing is not in synch, problems develop. You’ll see this early on in the physical world with balance issues, difficulty riding a bike, and spatial issues such like getting lost on a soccer field.

It is an even bigger problem in learning. This lack of coordination of the senses creates noise in the brain that most often causes ADHD -PH, but also impacts reading and learning.

Match Interventions To Source of Difficulty

If you are looking at an intervention then, at least be sure to choose one that matches the type of learning diagnosis. If your child has clear sensory issues or responded well to OT, then you should be looking in the sensory intervention world – Interactive Metronome, Balametrics, etc.

If your child had speech delays, trouble rhyming, reading delays and/or has no sign of sensory processing disorder,then the chances are you are looking at language processing issue. This is by far the larger of the two categories and not surprisingly there are dozens of options such as Orton-Gillingham and Fast ForWord.

#4. Trust your instincts, you’re the world expert on your child

The thing about evaluations is that they are a search for deficits, which for your child ends up being labels.  And yet we know one the most powerful drivers of success is confidence, which typically grows out of strengths, not deficits.

It seems the pressure on kids to be perfect in every ways ramps up every year.  And so, you might be vulnerable to comparisons to other children who seem to be soaring past your child or even to your child’s sibling who finds things much easier.

However, please bear in mind that every child’s journey to reading and learning proficiency is a little different. Some children are late bloomers.  There are lots of things to look for like this list of clues, but possibly the most important tell of a possible learning difficulty is inconsistency — the gap between one area and another that only you as the child’s world expert will see.

For instance, if your child loves math, but does not like reading, that’s a tell. Or perhaps he started to talk early and was well advanced in language, but now is not a keen reader, that’s a tell.

These are the kinds of things a parent can pick up. You are tuned into your child, you have a gut feeling about what he or she is capable of. Trust your gut.

Learning Evaluations Are Estimates

As we discussed early, learning diagnoses are descriptions of symptoms.  That description is hard to nail in one visit to a clinician.  And so, if you do decide to get a learning diagnosis, understand, you are still your child’s world expert.

Clinicians are looking for deficits and they are human, vulnerable to biases. They often see children through their own narrow lens. For instance, the vast majority of children who get checked out for vision therapy have a vision processing problem.

And the truth is that none of us are perfect – we all have deficits waiting to be discovered and named!

Yes, you will need an evaluation sometimes for practical purposes — persuading the school to get an IEP, insurance, etc. But if the learning diagnosis for your child doesn’t sound right or feel right, trust you gut and keep looking.

#5. Accommodations vs. interventions – very different paths

Interventions 101

Since the advent of the fMRI, brain imaging, scientists have observed that brains are always changing and self-improving. We know that stroke victims who lose the use of the majority of their brain cells are often able to relearn using the remaining cells. It takes a while, but it happens all the time — the brain can change.

And therefore, programs that take advantage of that brain plasticity — generally called interventions – are often worth a shot. If they are able to access your child’s underlying learning impediment – language or sensory — and work on cognitive skill gaps, they can be life changing. Learning is your child’s job.  If an intervention can not only make her better at her job, but even help her enjoy it and feel confident doing it, surely that’s worth the effort and expense.

Accomodations

Accomodations — like tutoring, medication and learning aids — offer a different proposition. They solve a problem today, they help children get through the day’s classes, homework or exams, but they do not address the underlying impediments to learning.  This applies to schools also. Accomodations help get you through the school year, but chances are, next year will be more of the same.

Yes, there is sometimes a boost of confidence from passing a test, albeit drug and/or tutor-aided.  But that’s not a real or lasing confidence boost. Children are smarter than that. They recognize when they are floundering, doing it with smoke and mirrors.

And yes, many children grow out of their learning difficulties in high school. But at what cost in the meantime.

Unlike tutoring, which is tried and true, and has been the go to solution for decades, interventions – including Gemm Learning — are a relatively new option, made possible actually by the fMRI. During the development phase, scientists can see if the interventions are having an impact. However, new is not a crime. Given the profound changes many of these interventions are delivering, they are worth investigating.

True learning confidence and independence comes from being a healthy learner. Most of the time, that means resolving the underlying impediments to learning, and that means taking on a learning intervention.

What to do with all of this info?

If you have doubts, start collecting free information.  See if the school knows your child’s reading level, for starters. Share you suspicions with your child’s teacher – you might be surprised at how insightful many teachers are.

You could consider getting a learning diagnosis although very often that is not needed if you are intending on pursuing a learning intervention, as most services provide pre- and post-testing as part of their process.

If you have suspicions about a learning disability, you could also call a few providers. Most are staffed with knowledgeable people who have heard and seen a lot of stories play out.  And most start out by offering a free consult, where they want to hear about your child and will offer their insights.

Yes, you have to be careful about bias – if you are holding a hammer, everything looks like a nail. And so yes, they might try to sell you their particular solution, but you don’t have to buy.

Which type of intervention?  Well, that’s a very different story.  This website has a lot of good information on it to get you started, particularly if you suspect your child’s learning issues are not related to sensory processing — you could tell us about your child here.

If you think sensory processing is the issue, start with Understood.org.