Battle of the Neurodiversities?

I have ADHD. Obviously, I’ve always had ADHD, and in retrospect it explains so much. The reason I know I have ADHD is because my oldest, who is a teenager, was diagnosed with ADHD, and I recognized in them what I went through and how I behave and react and feel and (over)think. I decided to get tested and the result was unsurprising.

My youngest, who is headed towards ten years of age, has been diagnosed with autism, though his is not quite typical and they are still puzzling out the specifics. (I had previously assumed he has ADHD because he regularly copes through hyperactivity.) He’s always had autism, obviously, and again in retrospect it explains so much of his behavior, his responses, his emotions and his thought processes.

Both autism and ADHD are classified as a neurodivergence – also called neurodiversity – meaning that there are connections and processes in these brains that are just a little different from those in the neuronormative brain. With both my children of school-going age, I have seen a notable distinction in how each is perceived, though: ADHD is generally taken a lot less seriously than autism.

What do I mean when I say this?

There is a difference between the way people respond to ADHD vs autism. Autistic people are, for better or worse, considered defined and constricted by their condition, and as such there is a tendency to understand that certain adaptations and adjustments should reasonably be made in order to allow autistic people to function, even thrive. Schools, entertainment venues and many other places make those adjustments and offer options to accommodate people who have autism. They rightly understand that there is only so much that autistic people can process and handle, and that there are certain things they cannot deal with.

I see this in the amount of help my youngest gets in school, and the modifications his teachers make to prevent him from getting overloaded and shutting down, never mind getting his work done. I’m very grateful for this, and I’m so happy that it’s possible. My son needs the adjustments that he’s getting, because without them he would simply not cope.

My oldest, the one with ADHD, is very lucky to be in a school that does its best to make allowances where possible, but the difference with autism as a neurodivergence becomes clear when we see that there are some teachers who believe that, because they take medication – a therapy, not a cure – which makes it possible for them to focus better and maintain concentration for longer – at the expense of an enormous amount of energy, it should be noted – their ADHD should somehow not be a factor. My kid gets high marks, they pay attention in class. See? If they take their pills, the ADHD is gone and they don’t need anything extra; no difference in approach, no attempts to reduce stimuli, no measures, such as additional preparation time for projects or tests to prevent crushing stress. There is no reason for them to be overly sensitive to sharp tones, chaos or loud noises, expectations, stress, because the pills are taking care of all that and so they now need nothing more than the other students do.

For people with ADHD who are not on medication, it often seems like the assumption is that now that they know they have ADHD they can just put a little extra effort into not being so busy or concentrating a little better. I’ve even heard someone say that ADHD is a lot harder on the people dealing with someone with ADHD than it is for the person who has ADHD, because these ADHD folks are so busy; it’s exhausting!

That, to me, is just delightfully and infuriatingly ironic, because that overload that “normal” people experience when interacting with people with ADHD is the overload that we experience all day every day interacting with a world filled with neuronormative people. On a regular person’s busiest day, I can promise that their heads are likely at most half as busy as mine is on a regular day, even when I’m on medication.

The main disconnect is in the idea that ADHD is still seen by too many people as somehow voluntary, willful, a choice. That somehow, we choose to have filters that don’t work well, minds that are constantly going and in directions we have little control over half the time, heightened emotional vulnerability, a need to vent the constant activity in our heads through excessive talking or movement, difficulty with impulse control. All of this wouldn’t be an issue if we just applied ourselves.

Well, let’s get to the science behind that for a minute. ADHD is essentially a dopamine regulation issue. We all produce dopamine, but where a non-ADHD brain has enough extracellular dopamine floating around to direct it to where it is needed, ADHD brains will re-absorb the extracellular dopamine, causing a deficiency which results in inhibited executive function. This is why someone with ADHD has trouble directing focus, maintaining concentration, sitting still, planning, correctly estimating time and duration, etc. These executive skills can be taught, but for someone with ADHD that simply takes more time and it also requires a lot more energy.

The dopamine deficiency also causes our “filters” to work inefficiently, if they work at all. A non-ADHD brain will make a preselection of what is relevant, interesting or necessary to be dealt with or even enter the brain, meaning that there is far less for it to process because there is a manageable amount of information that comes in.

An ADHD brain doesn’t really filter very well, if at all: every bit of information enters, resulting in a quickly overloaded processing center, because not only is everything that is seen, heard or felt there to be processed, there is no clear order or priority in which to do that. In a normal, calm environment that’s already challenging; now imagine a situation in which there are more and stronger stimuli than usual – a PE class, a free homework period, a class project.

Now, knowing this, compare this with the level of understanding and support given to a student with autism.

I think it’s obvious where I’m going with this: while ADHD often seems less constrictive than autism, often looks more like a case of too much energy, and has pharmacotherapeutical options to help reduce its effects, it is a real neuropsychological condition and the people that have it deserve to be taken seriously. Like people with autism, they need accommodations, adaptations, adjustments, understanding and acceptance. There are things they are not able to do the way neuronormative people can – just as there are things they can do that neuronormative people cannot.

We know enough about autism to know that those who are on the spectrum deserve our kindness, our patience and our best efforts to help them learn, grow and succeed. I really hope that we can make ADHD better understood, so that those who have it will be given the same consideration that is extended to people on the autism spectrum.

In the end, what we should all want is for these children to not only manage but thrive, to have confidence and to enjoy themselves. And for that, they also need our kindness, our patience, and our best efforts to help them succeed.

Even over scholen

Ik ga nu even vloeken in de kerk.

Het OMT kondigde gisteren aan dat de scholen voorlopig open blijven, en daar word ik heel blij van. Niet omdat de kinderen dan overdag “onder de pannen zijn”, maar omdat tijdens eerdere schoolsluitingen is gebleken hoe hevig de emotionele en psychische gevolgen zijn voor kinderen als ze niet naar school kunnen. Afstandsonderwijs trekt een enorme wissel op leerlingen en docenten, en het gevoel van sociaal isolement is voor kinderen (en natuurlijk niet alleen voor kinderen) funest.


Aan de andere kant blijkt uit de besmettingscijfers (in de link naar beneden scrollen voor positieve testen per leeftijdsgroep) dat de meeste besmettingen plaatsvinden in de laagste leeftijdsgroepen. Door dus de scholen open te houden – de plek waar deze leeftijdsgroepen min of meer onbeperkt met elkaar in contact komen en het virus vrijelijk overdragen – gaan we deze golf nauwelijks afremmen.

En hier komt dan mijn onvertogen woord. We moeten de winst afwegen tegen het verlies: scholen niet sluiten = waarschijnlijk een onverminderd aanhouden van hoge besmettingscijfers; scholen sluiten = psychische schade bij kinderen. En dan eens kijken of er niet iets in het midden ligt.

Dus … wat als we ons eens aanpassen aan de realiteit waarin we ons nu bevinden, en eenvoudig besluiten de druk te verlagen op docenten en leerlingen? Dat kunnen we bijvoorbeeld doen door eens te bekijken welke standaarden we aanleggen voor wat betreft de prestaties en doelen in het onderwijs. Die standaarden zijn namelijk gestoeld op wat haalbaar was in een tijd waarin we ongehinderd door een pandemie konden leven en leren, en er dus hogere doelen gesteld konden worden zonder dat er mensen aan kapot gingen. De vraag die wij onszelf nu misschien wel eens kunnen stellen is: hoe realistisch is het om dezelfde prestaties te verwachten in de huidige situatie die voorheen werden verwacht in een SARS-CoV-2-vrije wereld?

Even een uitstapje: mijn moeder groeide op in de Tweede Wereld oorlog, en wij hoorden thuis regelmatig hoe het er toen aan toe ging en wat er daarna bij kwam kijken om alles weer op gang te krijgen. Het onderwijs ondervond in die tijd ook wel degelijk beperkingen, en dus deed men wat kon, maar werden er geen doelen gesteld die niet haalbaar waren. Je móest je wel aanpassen, want de realiteit was onomstotelijk wat hij was.

Natuurlijk: wij krijgen nu geen bommen op ons hoofd, of fascisten en moordenaars aan onze deur (nee, complotmarmot: mensen die je vragen om iets bij te dragen aan de publieke gezondheid zijn geen fascisten en moordenaars), maar wat we wel hebben, is een gezondheidszorg die vanwege de constante en aanzienlijke toestroom van ernstig zieke mensen door toedoen van één bepaald virus op alle fronten vastloopt. Dat betekent dus dat niet alleen COVID-patiënten te lijden zullen hebben hieronder, maar dat álle patiënten te lijden hebben onder het voortduren van deze enorme besmettingsgolf.

En dan hebben we het nog niet eens over de mensen die (blijvende) schade aan onder andere hart en longen, en long COVID overhouden aan een doorgemaakte infectie. De nasleep hiervan gaat nog een behoorlijke klap opleveren, niet alleen aan de maatschappij, maar ook aan ons heilige koetje: de economie.

Maar goed, dit toepassend op onze situatie nu: wij leven in een wereld waar dit virus aanwezig is en blijft, en waar we blijkbaar eerst nog hardere lessen moeten leren voor we begrijpen dat het ongehinderd laten losgaan van dit virus niet leidt tot oplossingen, maar alleen nog maar tot meer problemen. En we zullen realistischer moeten gaan worden over wat we van mensen vragen.

Mijn vraag specifiek voor het onderwijs is dit: hoeveel kwaad kan het als de doelen iets lager worden gesteld? Als je ruimte creëert voor docenten en leerlingen om om te gaan met de situatie waarin we ons nu bevinden zonder op schoolniveau te moeten blijven presteren alsof er niets aan de hand is? Ik ben er niet van overtuigd dat we er slechter van worden als de werkdruk over een schooljaar iets verlaagd wordt, en we iedereen wat meer tijd geven om te leren én te leven op een veilige manier. De druk die er nu ligt op iedereen in het onderwijs, aan de kant van zowel aanbod als vraag, is krankzinnig in het licht van wat er momenteel gaande is.

En waar ik dus eigenlijk voor wil pleiten is dat er een tussenvorm bestaat tussen scholen helemaal dicht en scholen volledig open. Pas de onderwijsdoelen aan naar een haalbaarder niveau, en creëer daarmee ruimte om de scholen in een tussenvorm open te houden, bijvoorbeeld met halve klassen waardoor afstand houden veel beter mogelijk is. Verhoog dan niet de hoeveelheid huiswerk en thuiswerk, maar laat in plaats daarvan gelegenheid bestaan voor leerlingen om sociaal isolement te voorkomen door iets meer vrije tijd waarin kinderen eventueel op afstand of anders buiten of in COVID-veilige ruimten op een veilige manier tijd met elkaar kunnen doorbrengen.

En voordat er nu meteen hard wordt geroepen dat die kinderen dat echt niet veilig gaan doen, moet ik opmerken dat het overgrote deel van de tieners zich wel degelijk bewust is van de gevaren en daar ook naar handelt. Natuurlijk zijn er de rellende tieners, maar die zijn veruit in de minderheid, al halen die natuurlijk het nieuws, en de kinderen die zich wel normaal gedragen en zich aan de basismaatregelen houden niet. Dat is natuurlijk niet spannend, en het adagium is “blood sells”.

Ik denk dat met een tussenoplossing dus een hoop bereikt kan worden – het terugdringen van de besmettingen én het voorkomen van ernstige psychische gevolgen voor kinderen – en dat het gezien de omstandigheden de moeite waard is om eens te kijken of er aanpassingen gemaakt kunnen worden om die doelen te bereiken en de scholen en docenten, én de gezondheidszorg, én de kinderen heel te houden.

En dan ook nog even een ander verzoek: zouden we nu eindelijk, éindelijk eens kunnen investeren in goede ventilatie in scholen? Daar hebben we niet alleen nu wat aan, maar ook in toekomstige epidemieën van door de lucht verspreide ziekten.

Het is maar een idee.

Switching Schools

ready for school

The summer vacation ended not too long ago and the new school year is already near the end of its second week. For our daughter, her first day signified a big change because she has just started a new school.

In the Netherlands, different systems of education are available to children without having to resort to placing children in often expensive private schools. A specific type of school is often chosen according to the type of personality parents have seen their children develop and/or the values and goals parents have in place for their children. However, as children get older and make their way through the first years of primary school, their learning style becomes apparent and it may turn out that the initial choice of school was not the right one.

Our daughter started her “scholastic career” in a school that aims to teach children who are brighter than your average bear. It seemed like a good fit for our daughter at first, not because we claim that she is some sort of rocket scientist but because the school’s approach was to teach all children at the same level, then offer the ones that needed some more instruction additional help, and offer the ones that were at the higher end of the intellectual spectrum a more intense treatment of the curriculum to hone their already impressive skills. It sounds wonderful in theory. It turned out differently in practice for our daughter.

Our little miss has a number of qualities that made it more and more obvious to us that the school in which we had initially enrolled her was not right for her, and so we have spent the last year and half first trying to see how we could offer additional support at home, then butting heads with school staff at various levels, while at home our daughter became more and more withdrawn and angry and sad.

So which qualities are we talking about that made her unfit for her old school? First, our daughter is a social animal: she loves helping out younger kids, working on projects together with others, and including as many children as possible at all times. Second, when she is bored or uninterested, she will not concentrate on the task at hand and become easily distracted. This is not surprising, after all: don’t we do the same (see many a set of doodle-infested meeting notes at work)? Third, she has a lot of energy, and needs to move regularly in order to expend some of it. Sitting still is not her strong suit. When she feels uncomfortable, she’ll fidget. She spent a lot of last year fidgeting. And fourth, she perceives and processes information differently from the way many schools teach: her learning style is visual/spatial, also known as visual learning, as opposed to verbal thinking, which is what the curriculum in regular schools is based on. (The term “visual thinking” was unknown to me until two of my friends enlightened me and a whole world opened up for me.)

All these traits together resulted in her becoming more and more miserable at her old school, because she had trouble grasping the material, focusing on her tasks and connecting to her classmates. She would often come home in tears, feeling like she was the only child in class who didn’t understand anything that was being taught. Her teachers and advisor, in turn, blamed this on her attitude. Perhaps we should have her tested, they suggested, probably angling for a diagnosis along the lines of ADHD, a “condition” that is not so much a condition as a collection of symptoms for which the underlying cause could be any number of things, among which, it would seem, forcing material into a child’s mind using a teaching style that does not match that child’s learning style.

We had, at this point, already made several attempts to explain our daughter’s learning style, but a parent’s observation, it seems, is not enough, primarily because it does not result in additional funding, which in turn is required to create the space for an adapted approach. And that’s perfectly acceptable, just as it should be perfectly acceptable that we will not place an arbitrary psychological label on a perfectly healthy child in order to facilitate a school that is simply not a good fit for our child, something that an educator should be in a position to assess. We ourselves even tried to find various root causes, even going so far as to have her eyes checked when she complained about what turned out to be stress headaches.

During one meeting, we asked her teachers point blank: do you honestly believe that this is the right school for our girl? Well, they said, other schools aren’t much different, so really, it was fine. (In retrospect, apparently those involved feel this new school will be a much better fit for her.)

Well, it was not fine, and after a year of watching my daughter break herself in half to fit an impossible mould, we knew it was time to make a change because she was stressed beyond belief, miserable and bleeding self-confidence with every day she attended. By now, it had become abundantly clear to us that it made no sense to force a child with such a strongly visually oriented mind into the standard educational system with its straightforward, result-oriented, verbal teaching methods: set tasks to be performed over a continuous period of time, very little opportunities for creative expression, and sadly often large and noisy classrooms.

At this point, I should stress that these are good, hard-working, well-intentioned, dedicated teachers, and the type of education they offer works very well for many children. The disillusionment on my part comes from what I now perceive as either unwillingness or inability to acknowledge that the school was unable to offer what was needed.

Fortunately, as I mentioned earlier, there were options, and in our search for a better alternative we found ourselves at a Montessori school in our district for a hastily arranged introductory visit, because time was running out as the school year was quickly drawing to a close and finding a different school had now become crucial for our daughter’s emotional wellbeing. We sat in the principal’s office and explained to her how our girl thinks and which methods of explanation work best for her – we had spent a lot of time at home offering her alternative approaches to the material she was grappling with at her old school and found that simply showing how things work her using tangible materials worked very well for her; in doing so, we found that once she understood the material she learned very quickly indeed. The principal heard us out, smiled and nodded, and told us that such visual methods are precisely the methods they apply in their school. Other features: one-on-one explanation of the materials, which should ensure a much greater chance of ascertaining true comprehension on the part of the student; the ability to complete elements of the curriculum at your own pace (no more endless repetition of things you already know just because that’s what the set curriculum dictates at that time, or speeding past what you don’t yet fully understand, causing gaps in comprehension); working together with other classmates on tasks, such as language comprehension (social-educational engagement and being able to work together).

That meeting with the principal left me almost in tears of gratitude. Here, it seemed, was a place where our daughter could be herself and thrive under the guidance of a team of educators who approached children as children, stimulating their natural curiosity and eagerness to explore to cultivate an intrinsic motivation to learn. And we were not crazy, none of us: not our daughter, who had gotten lost in a system that was simply all wrong for her, and not us, for feeling that there must be a better way to learn.

Now, there is no more dragging our child out the door kicking and screaming because she doesn’t want to go, no more school-induced stomach aches. Our miss has loved her first week at her new school. First impressions of her teachers are that she is diligent, concentrated and enthusiastic, an outgoing child who connects well with her classmates.

It’s early days yet, but it feels like a very good start. It seems we’ve made the right decision.