A dad who knows little of his son's autism

My son is 7 and I know too little about his autism

My son is seven and a half years old. Earlier, I was thinking about what to write about on this website, and an obvious topic is life as a parent of an autistic child who has severe learning difficulties.

Shame, an old friend who frequently pays a visit, told me that, indeed, I know far too little about autism to talk with any authority about it. I can act as a sample, and some of the tips I discovered or heard may work for other parents, but that’s about it.

So, bypassing the regrets of my late start on the topic, thanking yet again, my wife for being much more switched on in her role as a parent than I am -she has read and is reading plenty about autism- I promise myself to be better in the months and years to come.

And I want to do it concretely. So the following is my pledge to myself ¹, made public to the internet and my friend Shame, for when he visits again in the future:

Today, I will briefly summarise what I understand of autism,
after seven and a half years of parenting our autistic son.

I will, in the next three years, gain a better understanding of what
the current scientific consensus, thinking and research
directions are around autism, especially in terms of what
interventions have received empirical support or are looking 
promising.

Once every three months, I will report the progress here and will 
try to synthesise my findings in a separate section of the website,
together with a directory of the resources I've discovered during 
my research.

My current understanding of autism  

I will try to summarise my understanding of autism as of today briefly. When I say this is my current understanding, I need clarification on its validity. Given how little I know about it, it potentially contradicts the current scientific and educational consensus.

This summary is informed by:

1. My day-to-day life as a dad with an autistic son.
2. Second-hand knowledge from my diligent wife.
3. Tips and tricks from other parents, educators and health professionals.
4. Minimal reading from parenting books focused on children with autism.
5. Minimal research on Google Scholar about scientific literature around autism.

Autism is a condition with a broad spectrum that affects the social and cognitive abilities of a person in several ways:

1. Underdeveloped or hyperdeveloped sensory input Persons with autism often have one or more sensory inputs that are underdeveloped or hyperdeveloped. Our son is a highly sensory-seeking boy who needs frequent, strong feedback from his senses of taste, touch, smell and proprioception. This high need for sensory input is sometimes related to searching for pleasure and other times as a coping mechanism for underlying anxiety.
2. Communication Persons with autism often have difficulty developing their verbal language. Some persons with autism never become verbal; some develop limited verbal ability, while others are perfectly articulate. My son is developing his verbal skills. He can communicate his needs and wants with one or two words and uses a visual communication book to express more complex needs. Sometimes, it is still difficult for him to communicate with us parents about what he feels or needs.
3. Social interaction Persons with autism often find interacting with other people hard, stressful and anxiety-inducing. High-functioning individuals with autism are often mostly affected by this aspect of the autism spectrum and sometimes don’t even manifest it outwardly in public spaces. We have heard anecdotes of parents with children in this part of the spectrum saying that their child uses their public persona at school to behave very differently at home, where they can relieve themselves of the stress of living that public persona.
4. Learning difficulties A portion of the population in the autism spectrum has learning disabilities. My son attends a special school, and their curriculum is tailored to each pupil. The pupils’ curriculum is based on the national UK one. Yet, it differs significantly from the curriculum our daughter, who is ten years old at the moment of writing, followed at my son’s age.
5. Challenging behaviour I recently read some statistics about challenging behaviour and autism, and the percentages are relatively high, especially among children with autism who also have learning difficulties. Suppose you are wondering what the term challenging behaviour means in reality. In that case, it is pushing and shoving others, pulling hair, slapping, kicking, throwing things and many other behaviours that you would define naughty, if not worse, to a neurotypical person. For persons with autism, this behaviour is often a form of communication when they are in distress or a consequence of being overwhelmed by the world around them.
6. Mood management Persons with autism often find it difficult to manage their mood. Indeed, the challenging behaviour I mentioned is closely related to the difficulty of finding proper balance. Anxiety and distress are experienced more often than in neurotypical people. As coping mechanisms, many people in the autistic spectrum display repetitive behaviours. Sometimes, this emerges as short, frequent loops of the same sequence of actions repeated over and over again, sometimes in more extended patterns of behaviour that may not be obvious at first glance. As an example, we have recently realised that our son, when visiting a new place, like a holiday home, feels the need to create his own space, his own nest, where he can retire and be undisturbed by others. Once he has that space, he will regularly, during the day, retire to it and prefer to be on his own before coming out to do a new activity.
7. No sense of danger. This is not true for all autistic people, but oh gosh, it is something that affects our family! When discussing autism in general, it probably wouldn’t be one of the points that make it to the main bullet point list, but as a parent, keeping my son safe is one of the most stress-inducing and constant struggles for us parents.

I said it would be a brief outline so that I will stop here. I could articulate my understanding further, but I have outlined what I believe are the main aspects.

As I follow up on my pledge, I intend to articulate more fully on this understanding in the future autism section of the website.