The ABCs of life with a child with neurodivergent needs

Last updated: 07-16-2020

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The ABCs of life with a child with neurodivergent needs

Parents of children with neurodivergent needs speak in code. ARND, SPD, ASD, ODD, OCD, pFAS, FASD, RAD, DSM…our alphabet kids have complex, often overlapping, sometimes conflicting needs.

Health care and educational professionals tend to speak in code, and it can be overwhelming and, frankly, confusing, to follow a discussion unless you speak the same code. When you first receive a diagnosis, it can be like watching a foreign film without subtitles that everyone in the room has already seen. It can also be scary, emotionally gutting and cause for ice cream.

Here’s the thing: your kid is the same kid as before. What the “alphabet” or label means is a means to accessing resources, understanding, accommodations and help for your kid, and a way to find a different way of parenting and thinking. The day I figured out it was a “can’t” not a “won’t” that prevented my kid from remembering tasks, it was life changing. When it’s a “can’t”, the behaviour and frustration makes sense; it’s inability rather than unwillingness, and that can make all the difference when it comes to solving the situation. Instead of seeing it as disobedience or defiance, you can respond with compassion and find a solution. So, knowing which “alphabet” applies to your child is a good thing.

My alphabet kid was born with Fetal Alcohol Spectrum Disorder (FASD) (among other things). When she was diagnosed, the form of FASD she has was identified as Alcohol Related Neurodevelopmental Disorder (ARND). In 2015, new Canadian guidelines simplified terms, and now FASD is the accepted terminology. In older reference materials, the older terminologies are used, and the information is relevant. I am including it all here to help you navigate the piles of information.

You might see descriptions like “FASD with sentinel facial characteristics” or “FASD without sentinel facial characteristics.” When FASD was first identified as a diagnosis in 1973, there was a great deal of weight attributed to facial characteristics, such as no ridge between the nose and upper lip, smaller eyes, low birth weight or smaller upper lip.[1] This led to a widely-held, mistaken belief that only kids with the facial characteristics have FASD. However, the mother must have consumed alcohol during the specific days the face develops in order for the deficits to develop, and it’s a small window. Most kids may not have any facial characteristics, yet still have the neurodevelopmental, cognitive, and behavioural affects that are lifelong, permanent, and pervasive.

There’s often judgement with an FASD diagnosis because it is directly related to maternal consumption of alcohol during pregnancy. In some countries, it is impossible to receive a FASD diagnosis without admission of alcohol consumption. There are hundreds of kids with probable-FASD because their moms had a beverage or two before they knew they were pregnant. There are also people, including medical professionals, who claim a “glass or two” won’t hurt the baby. I won’t pull out my soapbox, but the medical evidence begs to differ. The judgement can prevent people from getting help for their kids when they begin to notice the struggles, and that’s a shame.

I am more familiar with Canadian diagnostics, and some of the information may be different where you are. I am not licensed, certified, or even comfortable giving this as advice or a prescriptive solution. People helped clarify things for me along the way, and I am paying it forward. This is information only, and you should consult your health care team to see if any of the situations apply to your child. Here endeth the disclaimer.

This wasn’t intended to be a treatise of FASD, sorry about that. Let’s get on with the ABCs.

In alphabetical order, and by no means inclusive of all the different diagnoses:

ARND- Alcohol Related Neurodevelopmental Disorder. This is a form of FASD, the umbrella term for a host of problems caused by consuming alcohol during pregnancy). ARND has the cognitive and behavioural deficits, but typically does not have the sentinel facial findings.

ARND comes with learning difficulties, behavioural issues, cognitive impairments, executive functioning challenges, lack of impulse control and a bunch of learning challenges. Kids with ARND have trouble with cause-effect, abstract thinking, action-consequence, and that translates into “groundhog day” because just because Junior understood how to tie their shoes yesterday, does not mean they will remember today or next week.

Another fun aspect is an inability to extrapolate from examples because they are literal thinkers. So, the teacher may have given 150 examples of how to do a math problem, but if that exact example is not on the test, Junior won’t know how to solve it. And if you say 5 minutes, they will count on the clock for 5 minutes. Exactly 5 minutes.

Because ARND and all the other FASD spectrum are not recognized on the Diagnostic and Statistical Manual of Mental Disorders (DSM), the bible of psychological and psychiatric diagnoses, it is often mis-diagnosed as ADHD, or dismissed as bad parenting. Teachers without specialized training in FASD have a hard time working with special needs kids with ARND/FASD, and so do many health professionals, law enforcement and the criminal justice system. An adult with ARND cannot control impulses, and often can’t associate cause and effect or action-consequence. See it, want it, take it…think toddler brain…Ownership is fuzzy because it is abstract — money in your hand is yours, money on the dresser is up for grabs, even if it’s your room and your dresser.

ASD-Autism Spectrum Disorder The catch-all category for a range of behavioural and developmental issues. Parents, researchers and health care professionals have done a really good job advancing understanding and interventions for ASD. Interestingly, there are many mirror characteristics between ASD and FASD. Parents with FASD kids are often encouraged to seek an ASD diagnosis because teachers understand ASD better.

OCD-Obsessive-Compulsive Disorder Characterized by ritual or repetitive actions that the person feels they must complete to feel safe. Think Jack Nicholson in “As Good As it Gets” and his locks, plastic cutlery and avoiding cracks in the sidewalk. OCD can be debilitating if the person also has anxiety. One of our kid’s current rituals is the need to know the exact location of our cats at all times. She will ask multiple times a day, and if she cannot locate one, she has an instant panic attack and will run all over the house until she finds them. If she is anxious about something, her need to check increases. She also needs to tell me how to make a peanut butter and Nutella sandwich every single time — toasted, peanut butter on one side, Nutella on the other, more peanut butter than Nutella. Cut it on the diagonal in even pieces. Every single time.

People use OCD flippantly to describe someone who likes things a certain way. As someone who loves someone who deals with OCD, it’s not something funny or flippant or easy to manage. It is all-encompassing. (calming breath, calming breath…)

ODD-Oppositional Defiance Disorder In a nutshell, I say black, you say white 100% of the time. Kids with ODD take strong-willed to 2.0 and often have problems with not only parents but authority figures in general. ODD on a kid’s file is a one-way trip to detention, even when it isn’t warranted. ODD kids immediately become suspected of any kind of mischief or problem.

RAD-Reactive Attachment Disorder In simple terms, kids don’t bond with parents or caregivers and is often seen with kids whose basic needs weren’t met. Kids adopted out of orphanages, or who were pinballed through the foster care system tend not to develop healthy attachments because they learned pretty early that they would just get ripped away anyway.

SPD-Sensory Processing Disorder Imagine Costco on the Saturday before Christmas — the lights, the smells, the people, the noise…and that is SPD. Kids with SPD have sensory overload/underload issues. They may not be able to tolerate labels in clothes, seams in clothing, the fan in a heating unit that is white noise sounds like a floor sweeper, the hand dryer in the washroom has them covering their ears. Kids with SPD have a hard time in crowded places and can shut down or melt down. Too many people, too much stimuli, too many different objects in close proximity; any of these things can send a SPD kid into overload. What looks like a temper tantrum can be a meltdown due to sensory overload. My kid used to climb under the table in our favourite restaurant, which was popular, busy and loud. Temperature dysregulation can go with SPD, and you have to watch against frostbite and heat stroke because SPD kids cannot process that they are cold/hot as easily, so shorts in the winter and hoodies in the summer is not unusual. And socks are often the first thing to go.

There are subsets to many of these diagnoses. For instance, under FASD, there is FAS, pFAS, ARND, FASD, FAE, ARBD and a bunch of other letters that delineate the degree of impairment. In SPD, kids are typically a seeker or avoider.

When special needs parents get together, we shortcut with our diagnoses with the letters, and it’s common to see things like “My 10 YO ARND, OCD, SPD-avoider” or my “8 YO pFAS, ASD, RAD” or my “neurotypical 12 year old” which is code for a child who doesn’t have a bunch of letters. There is a trend to use neuro-divergent instead of special needs. It’s a more accurate description that focuses on the differences, rather than “special”.

Trying to get a specialist to GIVE you the letter can be a challenge, because many of the behaviours overlap. So, a kid with SPD may be mistaken for a kid with ADHD, because the chair is too hard, the fan is too noisy and they can’t sit still. A Kid with ARND may be mistaken for a child with ASD, because the cognitive, executive functioning issues are very similar, AND you can have a ARND child who also falls on the ASD spectrum. And don’t get my started on misdiagnosis…

Some alphabet are helpful-for example ASD is now more easily understood as a “can’t, not a won’t” and teachers, medical professionals, and slowly, the general population are cluing in that the kid is doing as well as they are able to do. There are lots of supports in place now that didn’t exist years ago, and movies like “Temple Grandin” are changing the stigma about kids with ASD.

Conversely, a diagnosis of ODD, while accurate, is not helpful. Teachers see ODD and assume the worst and hedge their bets with quick trips to the principal’s office or detention at the first sign of trouble. These kids don’t often get a chance to prove themselves.

None of these letters define our kids, but they can either help or hinder their school experience. FASD in all its incarnations is much less understood because it isn’t an “actual” diagnosis, although there are many people working very hard to have it included in the DSM. Howie Mandel has done a great job clearing many misconceptions about OCD and helping educate people that it isn’t something he can control any more than he could control his eye colour.

Our alphabet kids have a lot of challenges stacked against them and the parents of our alphabet kids do a lot of education, even among health care professionals. Most of us have wasted the better part of a meeting with school professionals educating the educators about what the diagnosis means for our kids in practical terms. Meltdowns due to overload, cognitive inability or too much stimulation can appear like tantrums, and are often judged to be poor parenting. When our daughter’s behaviour first started to manifest when she was around 5, the family doctor suggested I take parenting classes. Now I don’t pretend to be a perfect parent, but I could take parenting classes infinitum and it isn’t going to stop an SPD induced meltdown from happening, no matter how many sticker charts and removal of privileges and negotiated solutions I employ. If my child doesn’t have the executive functioning to allow her to process cause-effect and action-consequence, no chart in the world is going to change that.

The alphabet designation is only the first step, and it over leads to more assessments. It can be hard to navigate what the designation means in practical terms for each child, and more difficult to get the accommodations they need. At the same time, it can also lead to “ah-ha” moments for health and education professionals — same kid, same behaviours, same challenges, same strengths, same parents, same struggle…except letters validate, and take away the “poor parenting” monicker. That’s the most frustrating part — labels don’t define our kids, but they sure can smooth the path for some resources, tolerance and general slack-cutting that lessens anxiety all around.

And that causes many of us to use other letters of the alphabet that start with WT…

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