For years neurodiverse children and adults have been hidden from society because society enforces societal norms on learning, behavior and thought processes. Even in today’s world there is so much misunderstanding.
From the minute the health care worker said to me “oh his head is really big”, measured it then didn’t follow it up with “it’s okay “or “we should refer your son to your doctor” (it can be a physical characteristic of Autism), so you are left wondering as to what it meant but as a new parent trusting they are the professionals, so ask no questions to:
“Why can’t he thread a bobbin on a piece of string”, to me saying he has no interest in it but no one explaining it’s to do with assessing fine motor skills. You see societal norms tell us we shouldn’t question; they are after all the experts but experts in many fields only believe or enact processes and procedures in set ways because that is the way and what they been taught. A neurodiverse child or adult means we must look outside these perimeters, about communication, learning, process, respect, and acceptance.
There is not one way to learn, communicate, process. Imagine your thoughts right now and then times it tenfold or more. Imagine frustration of not being able to slow those thoughts and add onto it an unfamiliar or loud environment. Could you handle that as a neurotypical person? The answer is most likely no, as a neurotypical person our brains do not have that capacity, so why do we expect it of a neurodiverse person? B will stim a lot (stimming is a form of coping and can take many different physical actions), he also tries to sometimes dull the sound down by blocking his ears (he doesn’t like wearing ear defenders). Some children and adults, it becomes all too much, and they cry, maybe get angry. It is not naughtiness, in the way that society has taught and accepted, it’s frustration of a thousand thoughts/sounds/visuals and not being able to slow them down, to break them down and to stop the “noise”.
We must from the very beginning learn to fight to get our children the support and help they need (help/advice is fragmented), from the very first doctor’s appointment, to the referral to a community pediatrician, to the hospital to get blood tests and us as parents, to get their eyesight and hearing checked at the hospital, and back to the community pediatrician. This is without various other phone calls and assessments in the learning setting they are currently in. Then you get the diagnosis but there is no information given as to what this means, for your child, what support you can get them etc.
Then to get your child an EHCP, which by law is to provide help and protect them, through their educational years, you cannot write one positive thing on the form, otherwise the help is denied. If you move areas in terms of councils, you must pretty much start again. The help and provision you receive is different in each area and even though you have a legal document which is supposed to protect them, it is frequently dismissed, which can be from lack of funding, understanding or blatant discrimination.
We learn to question why over and over to give them the best chance because we must, as soon as you don’t question anymore because you are exhausted by the fight, (to get your child the same right to provision and care, to enable them to learn in the way that help them be the best of themselves) that’s when they get forgotten by the system.
Not one neurodiverse child/adult is the same as another.
Someone once explained it to me as, “you see a problem or something you want to build so you plan and build but a neurodiverse person will see it built then break it down bit by bit to fully understand the item/problem.
The thought process means they haven’t got time to be anything but direct, but some learn to mask for society to accept them. Waiting is another big thing, why do they have too? The day out to a place they love, or an item being delivered. It is not logical to them, you’ve said it is happening or the item is coming, why isn’t it now or here?
Some children/adults will never be able to communicate vocally but it doesn’t mean they shouldn’t be heard. Some use sign language, some use a tablet, or visual aid cards. Their thoughts are just as valid as anyone who can use their voice.
Routine is key as well, anything from a routine in diet, to school, to when they are not in school, what they wear etc. It’s a coping mechanism and when that routine is broken, it confuses, agitates, panics.
Sleep and food. Not all but it is common that some children will sleep only very short periods at a time, then can be up for several hours, then may only nap for an hour. Food colours, texture and if the food is not in the right container/, plate, bowl or not the right colour i.e. green instead of pink.
Danager. B does and doesn’t understand danger and it’s not uncommon. He knows to hold our hands when crossing a road because we have taught him but can also be easily distracted by chasing a seagull or pigeon if we are not.
The above only briefly touches the sides of what happens or is covered.
We learn all the time from our children how to celebrate the small things because in our world those are massive. There is not one regret we have being parents of an Autistic son, who also has Global Learning Developmental Delay and Hypermobility because B makes our family the best. We don’t know what the future holds, what he can achieve. He may become one of the greatest scientists or he may not, he can be anything he wants to be. For as long as we have a breath in our bodies, we will help fight his corner in a society that still has a lot to learn about acceptance, tolerance and how fabulous neurodiversity and neurodiverse children/adults are.
