The In-Betweeners: When There’s No Diagnosis for Your Child
What happens when your child is struggling but doesn’t have a diagnosis? It’s so much easier for parents to explain their child to a school, doctor or coach when there’s a label to go with the behavior: “She’s ADHD, please cut her some slack,” or, “He’s on the autism spectrum, please help him make friends.”
But what about the child who doesn’t make the cut?
Take Carly, a cute 8 year old redhead with a gap in her front teeth and a perpetual grin. Her mother brings her in to be tested because she just is having a hard time in second grade, but a full evaluation reveals that she does not meet the criteria for any disorder. She doesn’t have ADHD or organization problems, and she is not lagging academically. But one thing stands out: Carly is annoying. She talks a lot, laughs too loudly and is bossy. She’s driving her classmates, teachers, parents, and everyone else crazy.
And then there is Max. Max has an IQ of 82, in the “low average” range. He is slower than most of his classmates, and is also very immature. His peers are starting to outpace him socially. By age 10, Max is an outcast. He does not meet the criteria for intellectually challenged and he has managed to learn his academic skills with a lot of tutoring, so he is not eligible for any services. Max is not different enough.
And Maria. Maria is a 6 year old firecracker. She has tons of energy, is difficult to engage, and is only happy when she’s moving. An exceptionally intense child, Maria is a voracious learner but falls apart when she doesn’t get her way. Intense? Active? Emotional? Absolutely. Diagnosis? None.
Carly, Max, and Maria are what I call in-betweeners —kids with challenging symptoms that don’t meet criteria for a specific diagnosis. Annoying to be around or slower to learn or intense and active, these are types of kids who are challenging to raise and even harder to teach, but don’t meet diagnostic criteria, so they don’t get a label.
Some experts call this phenomenon ‘shadow syndrome’ as in, a mild form of a specific diagnosis but not quite….. But I prefer to see these children as “the in-betweeners” because it’s a positive term, unlike the slightly diabolical sounding “shadow syndrome.” In-betweeners are kids who don’t quite fit in. Their parents have a special set of needs, too.
Why is no label sometimes harder than a diagnosis?
When a child is atypical but does not meet a diagnosis, the parents can feel isolated and at a loss. You know your child is different, and you’re relieved that there is nothing more serious going on, yet it would be so much easier to deal with the difference if there was a label attached. Why?
Labels lead to services. When your child is diagnosed with a specific disorder, there is usually a designated list of services they are entitled to, either through the school district, regional center or through private pay system.
Labels lead to awareness. For example, when your child is on the Autism spectrum, you can educate yourself about the disorder. There are websites, books, support groups, and specialists at your disposal. Having a diagnosis can also help a denying parent be more accepting about his or her child.
Labels lead to understanding from others. Most people now know that having a diagnosis such as dyslexia, ADHD, autism or processing disorders doesn’t mean that there is something wrong with your family. These are neurodevelopmental disorders a child is born with.
In-betweeners and their parents don’t have these advantages. Instead, they are subjected to head- shaking and judgment from others who think, “What is up with that kid!” or “These children are just not being parented right.” As if parents needed more stress!
And with no diagnosis, parents tend to blame each other or themselves for their children’s problems. “What the heck is wrong with this kid? Can’t you discipline him better? We threw out all this money on testing and they didn’t find anything! It must be our fault—probably yours.”
Help for in-betweeners and their parents
Please be patient with me—God hasn’t finished making me yet.
Remember that saying? It’s a good mantra for your in-betweener, who may outgrow his or her difference. With early intervention, a child can outgrow a diagnosis but retain some aspect of the condition. For example, a child with early sensory integration disorder may continue to refrain from walking barefoot in sand and flinch at hugs, but otherwise be able to socialize with few problems. A child with an early speech disorder may develop into an excellent speaker but still struggle with spelling (there is a strong link between expressive language and learning to read and spell). The same is true for in-betweeners—with help, they often can overcome many of their challenges.
On the other hand, some kids grow into diagnoses as they develop. A child who just seems to be working a little too hard on mastering letter sounds can certainly develop a reading delay by later elementary school. A child who is just a bit eccentric can look more than a little different by a later age.
In the meantime, there are steps parents can take and advice they can tap. Determine the diagnosis that most closely resembles your child’s behavior, and use those resources. Diagnoses are not exact anyway—there is no blood test that correctly diagnoses psychological issues. So based on your own observations, find out what help is available.
Is your child super-energetic? Can’t seem to stop?
Check out ADHD, hyperactive impulsive type. Your child may not meet criteria but the same tactics may help change his or her behavior. Make sure your child is getting a high protein, low carb/low sugar diet. Eliminate junk food and artificial coloring. http://www.webmd.com/add-adhd/guide/adhd-diets This child also needs a strong cardiovascular workout daily. Limit screen time and increase active play. Mindfulness techniques or yoga can also be helpful. Join the fun and learn new techniques and diet along with your child.
Learning problems but not learning delayed?
Help your child stay on top of his or her academics with enough support. There is no substitute for early intervention; find an educational therapist from the national Association of Educational Therapists www.aetonline.org and you can prevent a small problem from becoming an overwhelming problem later one. Sometimes a retired school teacher or a tutor in your neighborhood can be helpful.
Socially annoying but not on the autism spectrum?
Your child will still benefit from social skills training and social stories. Social skills training is available in many areas through the school system or privately through therapists or speech therapists. Social stories is a technique originally developed by Carol Grey http://www.thegraycenter.org/social-stories to teach social cues and to better learn nuances of social communication. Some children will benefit from speech therapy if their pragmatic language seems off, even if there is so specific language disability.
And, so many parents can benefit from the counsel of a therapist, support group or taking their child for a few sessions of family therapy. Don’t forget to help yourself through the process of raising an atypical child.
There are lots of different types of “in-betweeners”. Is your child an in-betweener? Please write in and share your story.
12 thoughts on “Parents: Is Your Child an In-Betweener?”
Yes! So many kids fall through the cracks. This really throws some light on a little discussed issue. Thanks
Thank you for this great article!
I will keep you as a resource for the parents in my workshops.
Look forward to your book!
GET HELP PARENTING
Very true, and I see this problem fairly frequently. I tell parents to use the “language” of the disorder, i.e. the symptoms and behaviors that characterize the disorder, without using the actual name.
At any rate, most diagnoses are made based on the severity, frequency, etc of the disorder, and how seriously it affects the child’s life. So it isn’t necessarily that the child doesn’t have the disorder – more like they don’t have enough symptoms to give them an official diagnosis.
Thanks for this Rita. In my jurisdiction we speak of this grow as ‘falling in the grey zone’. And yes, they are the hardest to serve. They are in regular classes and, as you correctly mention, they aren’t far enough behind to get services or even an IEP in most cases. Teachers and administrators are frustrated in their attempts to improve outcomes for these students in the context of a regular classroom setting. In some schools and districts a attempt is made to move C ( ‘level 2’) students to B (level 3) status but the emphasis is more on achieving outcomes for statistical and school ranking purposes rather than addressing the learning needs of individual students. This is a good example of darwinism in education – the top group does just fine, the lowest receive services ad those in the grey zone will hopefully be streamed into programmes where they will have success and enjoy training that will lead to employment and self-actualization.
Reblogged this on Climbing the Cinder Cone and commented:
This post is from a very helpful blog written by Dr. Rita, a psychologist who focuses on the emotional health of parents of atypical kids. Here she discusses the extra challenges for families where the child “is struggling but doesn’t have a diagnosis.” We’ve been there; how about you? Her examples deal with younger children, but similar situations can happen with teens.
Thanks for your helpful insights, Dr. Rita! I just reblogged this post at Climbing the Cinder Cone. Our family has experienced having kids who didn’t qualify for a particular diagnosis. You are right about the difficulty in getting services, and not knowing where to turn, and questioning our parenting skills….
Thank you so much for this blog. I am a pediatric OT and have a passion for working with the kids who fall between the cracks – all exactly as you describe! I work with so many children who are very bright and often gifted/talented but struggle with intensities, sensory processing issues, motor coordination disorders, and more. They often are not eligible for services simply because they are bright – the “they are smart so they will be fine” attitude. We need more professionals who understand ALL the kids, including the “in betweeners”
Great article! There are a lot of In betweens that turn it into very famous successful creative people. So on the one hand you don’t want cookie-cutter kids but you do want them to get along with others. I agree social training and a child therapist can really help figure out the meaning of the behavior to improve it. And some kids need help to learn to get along better with others while some need help in math et….you don’t want things to turn into a diagnosis so as you suggest early intervention can really help!
I recently wrote this it goes with your article:) Our children’s misbehavior is a Message, Are we listening? http://listentomeplease.com/listen-to-me-please-blog/our-childrens-misbehavior-is-a-message-are-we-listening
Actually, after your list of all the things a label gives you should come the statement: label insults my individuality, label provides the illusion of a solution without a solution, Typing kids is at best a starting point or a stop gap or a gimmick for getting goodies from they system. Each child is in pursuit of his or her own calling, are job is to interact with each in the unique way that works for them, and help them self-define as they take on challenges and pursue becoming their character guided by their genius. (and I don’t mean ability.)
Actually, after your list of all the things a label gives you should come the statements: A label insults my individuality. A label provides the illusion of a solution without a solution. Typing kids is at best a starting point or a stop gap or a gimmick for getting goodies from the system. Each child is in pursuit of his or her own calling, our job is to interact with each in the unique way that works for each, and help them self-define as they take on challenges and pursue becoming their character guided by their genius. (and I don’t mean ability.)
Rick I really like that statement ” illusion of a solution without a solution”
Yes unless we get to this real source of the problem and what needs to be different solutions will be outside our reach! Kids need less academics more play more outdoors more emotional time with their parents etc. etc.:)
Appreciating the commitment you put into your site and detailed information you provide.
It’s great to come across a blog every once in a while that isn’t
the same unwanted rehashed information. Great read!
I’ve bookmarked your site and I’m adding your RSS feeds to my Google account.