Understanding the invisible challenges of language, memory, thought processing and emotional regulation in autism and ADHD.
There are moments as a parent of an autistic child when I find myself questioning something that most people probably wouldn't give a second thought to. Not because I don't understand it, but because I cannot understand why something so seemingly simple can be so extraordinarily difficult for my son to comprehend.
This weekend was one of those moments.
On Friday, my seven-year-old son, who has autism and ADHD, became unwell at school. I had to collect him from school around lunchtime so we left early, and after a few doctors appointments and a difficult Rapid Antigen Test it was confirmed he had influenza A. He was exhausted, feverish and clearly very sick. To me, the situation was straightforward. He was unwell, he needed to rest, and he couldn't return to school until he was well enough.
But to my son, none of that logic seemed to connect. Not immediately. 24 hours were tough for him, high fever, in and out of sleep and generaly lethargy. But what has followed I didnt expect.
Once he came around and could function a bit better he had moments, several moments were he was upset and couldnt understand why he couldn't go back to school. He couldn't understand why being sick meant staying home. He couldn't reconcile the fact that he had left school on Friday with the reality that something important was still happening there without him. But when i say upset, i dont mean, him saying to me, Mummy I am sad, it resulted in explosive meltdowns, crying, hurting himself and me, and constantly becoming overwhelmed and angry.
What has followed, from Friday through to today, has been an almost complete disconnect between what he believed was happening, what he desperately wanted to happen, and the reality of what was actually possible. Four days of repetitive questioning, emotional distress, an overwhelming need to return to school and virtually no sleep. He has continued to insist that he needs to see his teacher, someone with whom he has developed an incredibly strong emotional attachment. No amount of explanation has seemed to resolve the situation. No matter how many times I explain that he is sick, that he cannot return to school yet, or that the Halloween parade has already happened, we somehow return to exactly the same conversation.
I have found myself saying the same things over and over again, becoming increasingly exhausted, wondering how to explain something that, to me, requires no explanation at all.
And then I realised something.
What if the difficulty wasn't understanding the words? What if the difficulty was connecting those words to meaning, memory, emotion and what was happening around him?
When understanding language is not the same as understanding meaning
I think one of the greatest misunderstandings about autism is the assumption that if someone can hear words, speak in sentences or repeat information, they must also understand what is being communicated. But language is so much more complicated than that. Understanding a seemingly simple statement such as "You can't go to school because you're sick" requires several cognitive processes to work together. A child needs to recognise their current physical condition, understand the relationship between illness and attending school, recall the rules or expectations associated with being unwell, accept that their normal routine has changed, and apply that understanding to what happens next. They also need to manage the emotional consequences of that information.
For some autistic children, particularly those with additional language-processing, attention or cognitive difficulties, those connections may not happen automatically. The words themselves might be familiar. The individual concepts might even be understood. But connecting them, particularly under stress, can be extraordinarily difficult or virtually impossible for them. When the child is physically unwell, overwhelmed or anxious, their capacity to process and use information may become even more limited and this is something that generally is misunderstood when it comes to Autism. I have spent years working in complex environments, and yet I sometimes find myself completely defeated by the challenge of communicating a basic concept to my own child. Trying to calm him in these situations is virtually impossible.
Not because he isn't listening. Not because he is deliberately refusing to understand. But because his brain may not be processing the information in the way I instinctively expect it to. That distinction changes everything.
The invisible complexity of memory and thought
When people talk about autism and ADHD, they often focus on the more visible characteristics. Social communication, repetitive behaviours, attention difficulties, sensory sensitivities and emotional regulation are all frequently discussed. What I hear far less about is the complexity of memory, working memory, language processing and the ability to connect information across different situations. Working memory allows us to hold information in our minds long enough to use it. Cognitive flexibility helps us adjust when circumstances change. Language processing allows us to interpret what someone is saying, while executive functioning helps us apply that information to decisions and behaviour. These are different processes, but they interact constantly.
Think about what my son was being asked to understand on Friday. He had been at school. He had expected to participate in a Halloween parade friday afternoon and saturda. He had become sick and needed to leave. His teacher was still at school, but he was at home. The event he had anticipated was now over, and there was no way to return to that moment. He was faced with unexpected change, uncertainty, confusion and overall disjointed activities all of which cloud an already complex mind.
For most neurotypical people, these facts form a logical sequence.
For my son, they seemed to remain separate pieces of information that he couldn't bring together in a way that made emotional sense. Perhaps the most difficult part was his inability to understand that he couldn't change what had already happened, or that the things he desperately wanted to happen simply weren't possible at that moment. He couldn't go back to Friday. He couldn't attend a Halloween parade that had already finished. He couldn't return to school while he was sick, and he couldn't see his teacher simply because he needed to. Yet in his mind, these were things that still needed to happen, and he wanted them to happen immediately and still does. The passage of time, the reality of missed opportunities and the circumstances preventing him from doing what he wanted seemed impossible for him to reconcile.
What has followed is a relentless cycle of anxiety, emotional dysregulation and almost no sleep. Every explanation seems to bring us back to the same place. He becomes distressed because he cannot do what he wants, seeks reassurance, briefly settles, and then the entire process begins again. And all of this is happening while his little body is trying to recover from influenza A.
That is perhaps the most heartbreaking part. His difficulty processing what has happened is now interfering with the very things he needs to recover: rest, sleep and emotional regulation. Instead of being able to focus on getting better, he remains caught in a state of distress and heightened anxiety, physically exhausted but unable to settle. The lack of sleep and constant emotional upheaval are making his recovery even harder and may be prolonging the time it takes for him to feel well again.
And as his mother, I am caught in that cycle with him, trying to explain a reality he cannot seem to accept, knowing that every sleepless night leaves us both more exhausted and less able to cope with the next day.
This is what people don't see when they talk about the hidden challenges of autism. It isn't simply a child being disappointed about missing a school event. It is the difficulty of processing and reconciling reality with expectation, and the extraordinary emotional, cognitive and physical consequences that can follow.
It is possible to remember something intensely while struggling to process the explanation surrounding it.
I think this is something that deserves far greater attention when we discuss the hidden challenges of neurodevelopmental disabilities.
When an attachment is more than an attachment
One of the most heartbreaking aspects of the weekend was watching my son repeatedly ask for his teacher.
For him, seeing his teacher wasn't simply about wanting to return to school. She represents something deeply important in his world. Familiarity, predictability, emotional connection and perhaps a sense of safety that he cannot yet explain in words. When he is distressed, that attachment can become an overwhelming focus. He doesn't necessarily have the language to tell me that he feels unsettled because his routine has been interrupted, that he is struggling with the disappointment of missing an anticipated event, or that he needs reassurance that the relationship with his teacher is still there.
Instead, he tells me he needs to go back. Again and again and again and again. I find myself sobbing just writing this. As his mother, I can spend hours responding to the words without necessarily reaching the feeling underneath them. This is where communication becomes so much more than language. Sometimes what sounds like a demand is an expression of anxiety. Sometimes repetition is an attempt to make sense of something unresolved. Sometimes an apparently illogical request is the only way a child knows how to communicate a very real emotional need.
It doesn't mean that every behaviour can be neatly explained by autism, or that I always know what is happening inside my son's mind, I dont at all. But I am learning that the words I hear are not always the whole message.
Perhaps accessible communication should not simply be measured by how easy something is to read, but by how easily it can be understood, processed and applied.
Two very different experiences of autism
My son's experience has also made me think about my own autism and ADHD, and the extraordinary differences that can exist between two people who share the same diagnostic labels. I have always had an intense need to understand things in detail. I research, investigate, analyse and search for the connections between information. When faced with uncertainty, I often need more information, not less. I can become consumed by the need to understand the underlying mechanics of something before I feel comfortable making a decision.
My son, on the other hand, can struggle to understand and act on a seemingly simple explanation, particularly when he is distressed. Neither experience tells the whole story of autism. We process information differently, have different abilities and different support needs, and experience our environments through our own individual neurological profiles. Yet I wonder whether there is a connection in our shared need for information to make sense. For me, that can mean searching for every possible detail until I feel I understand the whole picture.
For my son, it may mean returning to the same question or request because the information he has been given hasn't resolved the uncertainty he is experiencing. I cannot assume that our internal experiences are the same. They almost certainly aren't. But being autistic myself has made me far more conscious of the possibility that the way someone communicates, processes information or responds to uncertainty may be very different from what the outside world expects.
And that awareness has changed the way I parent.
Perhaps we need to rethink what understanding looks like
I keep coming back to the heartbreaking realisation that we spend so much time trying to make language simpler, removing technical words, explaining things differently and assuming that if we just find the right words, understanding will follow, yet we rarely stop to consider what happens when a person simply cannot process what we are trying to tell them. As a mother, there is something incredibly painful about watching your child become overwhelmed by a world that makes perfect sense to everyone else, knowing that no matter how many times you explain, reassure or try to help, you cannot make his mind understand what his heart so desperately wants to be different.
Perhaps true accessibility isn't about simplifying the words we use, but about recognising that understanding happens differently for everyone, and sometimes the greatest act of compassion is to stop expecting someone to understand the world in the way we do, and instead find a way to meet them in theirs.
The hidden challenges deserve to be seen
Autism is often described through characteristics that other people can observe. But so much of the actual experience happens internally, in processes that cannot be seen. The effort of understanding language. The difficulty of holding information in mind. The challenge of moving between expectations. The difficulty of connecting cause and effect in a moment of distress. The emotional consequences of missing something important. The overwhelming need for familiarity when the world no longer feels predictable. These challenges can be profound, even when the situation appears ordinary.
My son missed a Halloween parade. To everhone else, that may seem like a small disappointment. There will be another school event, another celebration, another opportunity. But for him, on that Friday, it was far more than a missed parade. It was a disruption to his expectations, a separation from someone he feels deeply connected to, and an experience he could not easily understand or resolve. And for me, it was another reminder that the most disabling aspects of autism are not always the things we can see.
Sometimes they are hidden in the space between hearing a sentence and understanding what it means.
Sometimes they are hidden in a question that is asked fifty times.
Sometimes they are hidden in a child who cannot reconcile what has already happened with what he desperately wants to happen now.
And sometimes they are hidden in a mother, awake in the middle of the night, searching for a different way to explain something that the rest of the world considers obvious. I don't want the world to lower its expectations of my son. I want it to understand that reaching those expectations may require a different pathway, different communication and far more support than people realise.
Because perhaps the real challenge isn't that some autistic people cannot understand what we are saying.
Perhaps it is that we have spent too long assuming that the way we explain the world is the way everyone should be able to understand it.
And that is something I think we all need to reconsider.
