Does this sound familiar?
“I don’t care if he has Asperger’s/HFA, he needs to learn he can’t just say what he’s thinking!”
“ADHD is no excuse, she needs to pay attention.”
“You need to be more consistent. You should make a chart with rewards and punishments.”
“My kids ate what I put in front of them or they didn’t eat at all.”
“You shouldn’t let her do anything until all of her home work is done. If she complains or has a fit, then take away devices until it’s done.”
“He needs to do as he’s told, you just don’t command enough respect.”
“Reward the good behavior, punish the bad.”
It would be surprising if you’d never heard these things because they are very typical of parenting advice given by both other parents and by professionals.
To some extent, they are correct… IF you have a child/teen who is completely Neuro Typical (NT), meaning a kid with no developmental delays at all.
In most cases, the average kid with no challenges and little anxiety is able to follow instructions, process what’s expected, and comply.
For instance, if you say to an average NT kid, “When you’re finished with your homework, then you can play on your tablet until dinner”, he might make a face or complain a little, ask for help if needed, and then get the work done to get his tablet time.
For a kid with delays it may not be so simple.
First of all, many of these children cannot ask for help. What does that mean? It means they know it’s hard for them to do the work, but they cannot communicate why. In children with developmental delays the part of the brain that connects intellectual information to the part of the brain that handles emotions and feelings is not fully developed. In other words, even if they do know why the work is difficult (ex: didn’t understand the directions) their brains can’t always organize words in a way that allows them to communicate that clearly.
In situations like these they are struggling to adhere to expectations and getting frustrated with their own inability to explain or even understand themselves. Their anxiety begins to rise quickly because they know that something is expected of them, but they can’t comply (notice it’s not “won’t comply”), so they become emotionally dysregulated.
If you decide to punish them by saying, “no tablet until that work is done.”, their frustration and anxiety will continue to rise and the ability to use expressive language to communicate will diminish even more, increasing the likelihood of more emotional dysregulation and a full-on meltdown. Not a tantrum which is a fit based on not getting one’s way, but a meltdown which is caused by emotional overload. It’s interesting to note that a tantrum can be stopped by giving the kid what they want, and a meltdown cannot be stopped until emotional equilibrium or a sense of safety has resumed.
To avoid overload and meltdowns, it’s important to know what a kid can do, and to take into account how much that ability can change as circumstances change. Dr. Ross Greene, behavioral child psychologist, credits his profound success in helping behaviorally challenged children with his philosophy, “Children do better if they CAN.” Anyone who has put this philosophy into practice has learned pretty quickly that it really works, not just for children with delays, but for all of us!
If you are struggling with any kind of behavior issues I highly recommend his book. The Explosive Child, The: A New Approach For Understanding And Parenting Easily Frustrated, Chronically Inflexible Children
Dr. Ross Greene explains how to help kids do better
A kid who is emotionally dysregulated needs help finding what Dr. Greene calls “The unsolved problem that causes the behavior”. Truly understanding this means that we have to be willing to constantly adjust our expectations to meet the needs of a brain that is processing in it’s own very unique way.
Now, you may say, “He knows how to do the work, he just doesn’t want to. He did it yesterday with no problems.” Well, that was yesterday, and yesterday he didn’t have the onslaught of social and emotional challenges he had today (many of which you may be unaware of), which have pushed him to the limits of his ability, as a result the part of his brain that should be using rational thinking is off line and he really can’t tap into what he knew yesterday.
To make matters worse, we often punish the behavior (which is a result of this overwhelm) by taking away the very things that help his brain regulate, like playing games, watching videos, building Legos, reading comics, or riding his bike. This often results in a kid with tremendous anxiety and very little emotional control.
Whether it’s not eating what’s put in front of him, not brushing his teeth because of Sensory Processing issues, or speaking without thinking about how his words feel to another, or forcing a kid with ADHD to sit at attention for long periods of time, the problem is the same. These kids are not making the neural connections that allow them to handle these things intuitively.
To get an idea of how it feels to be put in a situation that is beyond your current abilities, imagine your boss came to you and said, “From now on I only want you to speak French or your paycheck will be docked $50 for every word you say in English.”, but not only are you slightly hearing impaired you also don’t speak much French. It wouldn’t be long before you wouldn’t have a paycheck, and you would also owe your boss money! Would that make you angry? How about frustration? What if it kept happening over and over every day?
No one in their right mind would suggest that you need more punishment to motivate you to start speaking French. That would be absurd!!!
A reasonably person would help you to learn French in a way that worked for someone with your specific hearing impairment.
People who really know and understand developmental delays such as Asperger’s/HFA, Giftedness, ADHD, Attachment Issues, and Learning Disabilities and the associated anxiety, know that there will be challenges.
To be honest, there will be many challenges.
Unfortunately, there are many professionals (teachers, therapists, and psychiatrists) who have little to no scientific, fact-based knowledge of what these delays really are or how they affect the development and functioning of these children. There is a lot of misinformation out there, and sadly many parents are left confused and frustrated with the lack of progress or the inability of professionals to really help. In addition, extended family, friends and community have almost no real understanding other than old outdated ideas that look a lot like what people used to call “Mental Retardation”, which is in no way connected to any of the higher functioning developmental delays listed above. Many of these kids are actually highly intelligent and gifted, but may never have an opportunity to evolve in their full potential because the focus is… and here is where things get sticky… on teaching them to behave rather than teaching them to understand.
As a result, therapies that don’t work, unnecessarily over medicated kids, and schools that are not prepared or equipped to handle these kids lend themselves to disastrous outcomes, often backing these kids into a mental health corner. Depression and severe anxiety are common among these kids. The suicide rates for children with developmental issues is frighteningly high.
Often, uninformed people look at the parents of these unique children as if they have raised a defiant brat because they have little to no understanding of how these differently wired brains process information.
The question then becomes “How do you know if it’s brattiness or a developmental issue?”
Well, in a perfect world, a neuropsychiatric evaluation would give you definitive answers as to where the child struggles and what modalities could be put into place to improve the quality of life for all involved.
Unfortunately, many evaluations come back incomplete because these children are hard to test. There is no question that subjecting a child or young adult to a battery of tests that can last over 8 hours over a period of a day or two is going to produce serious emotional dysregulation in itself.
Adding to the challenge of getting a proper understanding of a child’s delays, many professionals do not understand what these diagnoses really mean. Some go so far as to say it’s made up or over diagnosed because they cannot see it, or worse, they think that these labels simply mean it’s a behavioral problem and feel they need to treat the behavior without addressing the issue of understanding and the resulting anxiety.
These invisible diagnoses are not fake, and there is plenty of scientific evidence for the fact that these brains work differently. It takes a lot of knowledge and testing to even get the diagnosis. There are strict standards for testing and it’s unlikely you would be given a diagnosis if you were just a defiant brat.
For someone to claim your child is not whatever you know him or her to be diagnosed with is just illogical.
Sure, it’s possible to get misdiagnosed with a developmental delay, but it is not common. Certainly not as common as the misdiagnosis of childhood mental illness. To have a friend, parent, or teacher question a diagnosis with so little understanding and information is ridiculous.
Think about it for a minute: if you were diagnosed with stage four cancer, but you looked fine, how inappropriate would it be for a person to look at you and say, “You just need to stick to a strict diet and exercise, there is nothing wrong with you"?
If your child or a child you know has been diagnosed with a developmental delay, then it’s important to know that the child has limits that are very different from other children and you have to trust that the parent is working hard to know when the child is struggling and when they are being a normal kid testing the limits.
It’s definitely not easy to know when a kid can’t and when he won’t, but if you don’t live with the kid, and you don’t have a full understanding of the diagnosis and all the brain functions involved in that diagnosis, then it would be a real shame to call that kid a defiant brat or label him with ODD (Oppositional Defiant Disorder) or PDA (Pathological Demand Avoidance) or blame the parents for bad or inconsistent parenting.
It’s not just kids who do better if they can, it’s parents too!
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Hi! I’m Yvette Marie a Thought Wrangler (an intellectual nomad looking for understanding and hope in all things). I created this blog space because I believe Flexibility and Flow in Neurodiversity is not only possible, but necessary for living a full life of health and wellness.