Even though most people know of at least one person, adult or child now days, who has been diagnosed with autism, most people really have no idea about what it is or what it looks like.
Part of the challenge with that, is that it has such a broad spectrum of typical characteristics, that it can never be assumed that two people with the same diagnosis are the same. On top of that, our societal view, understanding, acceptance and inclusion of autism is changing, so there is a wide range of feelings, beliefs, experiences and knowledge about it all at the moment, and the interaction about autism can vary, depending on who you are speaking with, and what their views, experiences, understanding and feelings are about autism.
I guess the first thing to understand is someone diagnosed as autistic is most importantly, a human being first. So often, when we have a label or diagnosis, we tend to respond to that, as opposed to opening ourselves to a human being as we would with someone without the same label or diagnosis. Autistics come in all different packages, just like all people. They have different personalities, different loves, different challenges, different beliefs.
In more progressive circles, autism is not seen as a disease, disorder or disability. It is seen as a neuro difference. Autistics are known as neurodiverse, and non autistics neurotypical. In fact many neurodiverse people are awesome at advocating for social justice, and work hard to educate and raise awareness about our conscious and unconscious ablest attitudes and actions as individuals and as a society.
Autistics often get assumed as being intellectually impaired. Whilst some may have challenges intellectually, it is often a result of other diagnosis or complexities. Many autistics are actually super smart, but because of the way their brain works, their lack of strength in social skills and communication can make it incredibly hard to assess their understanding, especially in their areas of strength according to our standardised testing.
One of the things we understand about autism is they actually are highly attuned to the environment around them, picking up every sound, smell, visual, feelings etc. They pick up way more than non autistics, and it is very hard for them to filter important and non important information, and can lead to them not coping with all their senses getting overloaded. They experience everything non autistics block out when we focus on what we are most focussed on, and can find it hard to focus on what is sometimes assumed to be the most important aspect to focus on.
Most autistics are gifted in their strengths. That might be math, problem solving, electronics and computers for others, writing… you name it. They are amazing at their strengths and can amaze us and contribute greatness to our society when nurtured in their strengths. Sebastian’s gifts are already presenting in the areas of electronics and problem solving. He is awesome at puzzles when he understands the outcome, and for a new two-year old, he has mastered the iPad as well as many adults I know, and engages in numeral, letter and colour games in a way I cannot possibly engage him. In his strengths I have learned so much about him, grasped his intelligence, and found his interests and ability to focus.
The area autistics are challenged by are social engagement and interaction, communication, sensory interests and sensitivities, and repetitive or restrictive behaviours. What that looks like will be different for each person.
Sebastian has no words at all, so is considered non verbal. Now let me explain that. It’s not just a case of, “all kids develop in their own time”, although, that is true. When you embark on this journey, you learn so much about what happens developmentally before something else is able to occur etc. And keeping in mind we are talking about functional and contextual language… not whether a child can say the word when prompted or is echo-laic.
Before a child learns to use words, a number of smaller accomplishments have to occur developmentally, prior to forming language to communicate. Two examples are pointing and shared attention. These things naturally occur in most children, and are not something even noticed or celebrated as a child grows and develops. Sebastian still doesn’t point, wave, share his interests or enjoyments. So Seb is developmentally a long way from words still, for example, and he may never choose to use them. This can be because of praxis challenges, where his brain cannot organise and identify the steps to do these things, that many of us never have to think about, and happen naturally. Seb’s brain cannot process the steps to do these things.His neurology isn’t wired for that yet. This could improve with a lot of help, but it also might never, and that’s ok.
Sebastian makes fleeting eye contact at best. He does not make meaningful connected eye contact, not even with me, his mother. He actively AVOIDS eye contact. In fact, the more you try to communicate with him, it can be incredibly uncomfortable for him. Seb can hear our voice, smell our breath, feel the heat of our skin, and notice every detail happening around him near and far, and his little body and brain is working through that. He may also have an idea about something he wants, or doesn’t want, and our communication to him can be distracting the idea he is trying to focus on, which can be very stressful.
He doesn’t realise that when he sees someone he knows, that he should, or could say hello, or goodbye. He doesn’t understand what a another’s smile might mean, or an angry face. He can find it hard to read those cues that most of us don’t even think about. Sebastian generally has a very blank expression on his face, unless something really engages him that he is enjoying, and it might not be something we notice, or find engaging. He doesn’t enjoy a lot of people, places that are loud and unfamiliar to him, noise, loud voices, people touching him. He is very happy, and most happy on his own, left to his own devices. He doesn’t know how to play with children or adults, or that he could or should. He can be curious about other children and people, but his curiosity often looks like an over interest in their hair, or toes, or shoes… and that freaks others out.
He doesn’t see a toy car or truck or train as they are. He sees the wheels that are fun to spin, or that he can chew it. He doesn’t know a doll is a pretend play baby. He has no mirroring behaviours, so pretend play is lost on him, and not interesting, and he literally doesn’t get it. Seb is not into toys like most kids, as he doesn’t see the toy as another child would. He sees a toy as something to chew, or if it has moving parts, lights or sounds that catch his interest, he will hyper focus on those, and it will lead him to stimming behaviours, like flapping, humming, spinning items, jumping etc.
If I take Seb to the park, he just runs, gets overstimulated with all the children, people, light, wind, equipment, sand, soft ground, noises etc there, is more interested in taking people’s drink bottles because he loves the sensory experience of shaking the water and watching it move and sparkle in the light. He does not notice other children around him, or wanting to have a turn on the slide, or swing, and doesn’t see the play equipment the way another child does anyway. The park is not a fun experience for Seb, or me as a result. He actually gets so overstimulated he cannot balance correctly and is prone to falling over walking or running and hurting himself, and cannot even see where he is going. It’s not even “safe” for him as a result.
Because he has no mirroring behaviours, and is not socially motivated to imitate others, teaching Seb skills is extremely hard. Understanding how to use cutlery, drink from a cup, toilet training, teeth brushing, bathing, dressing are all things I have no idea how to help him learn, and will take a lot longer than other children.This is further complicated by praxis challenges, where he neurologically isn’t able to organise and facilitate the steps to making all these things happen.
When Seb gets overwhelmed and has a tantrum or meltdown, he needs support a little differently to other children. He needs reassurance, and support and for me to help remove all the noise, lights, people, and help him decompress. He needs me to acknowledge how he feels, and what is occurring, and validate that. He is not being naughty… it is because something in his world has not gone the way he truly believes it should, based on how his brain has linked things to work.
Sebastian sorts his days and life through routines. Whilst I have always tried to ensure he has routine but flexibility in his life, sometimes Seb forms an idea about the pattern things occur in, and when that doesn’t happen the way he expects, he can find it incredibly difficult to cope and have a melt down. I work hard to support that, and not challenge that for him wherever I can. This is a huge thing in our lives, as it impacts everything we do… shopping, work, how we have a bath, meals, bed time, go in the car, how we socialize, (or lack thereof)… It can even influence on how I dress and do my hair! For me it has become an unconscious competency, that I know longer have to think about, it is just how we do things.
So as you can see, Seb, whilst very smart, and interesting, amazing and very bonded with his mum, can find the world a really hard place to live. And frankly, the world is not really ready and set up to support and embrace neuro-diverse people. There are massive amounts of ignorance around autism, it can be confusing as Seb looks like any other gorgeous child his age… but when people see him flapping or posturing his arms and fingers and pulling strange faces, or flicking his ears, or head banging or pinching his mum, or trying to bite her… they don’t know what that means, or how they should respond. As Seb is older, some may fear him, some may bully him. When people see him at the shops and say hello to him as they find him sweet, and he doesn’t respond, they might think he is rude… and honestly, it can be hard for me. As his mum, do I explain to this lovely stranger he is autistic and doesn’t speak, or do I smile and move on and assume it’s none of their business, or do I stop and take some time to explain why Seb is behaving the way he does, and help them learn something…. Honestly, at different times I swing between all of those responses and more! LOL!
My beautiful son is growing up in a world where people talk about “things that cause autism” like it is something that would be terrible to have, and must be avoided… which means they believe a person who is autistic isn’t as valuable as a non autistic. In a world where people will formally acknowledge him etc, but make no real effort to connect and relate to him, assuming he doesn’t get it anyway, or underestimating him… or saying things that our ablest society says to and about him.
Sebastian may improve from where he is at today, and he may not. I, as his mum, will do all I can to ensure he has every opportunity to live a full, independent, happy and contributing life, that he feels good about himself in, just like I would if my son were not autistic. But that’s not easy. My journey in getting him the resources to help him is tough. The time needed to support Seb develop is incredibly intensive, and growth is very slow. Funds to get him the help he needs are inadequate. Even the supportive people in my life don’t understand Seb, or what our life is like as a result. That in itself can be frustrating, and then I feel bad, because I know people are trying to support us.
People often assume because they see my comments or photos on social media about Seb, they know him. Or they think he is like someone else they know who has autism, or has had challenges. They don’t see the things I have shared above… and honestly they are just a very small few things. Some people think he is like another child they know diagnosed with autism who just seems to have a few behavioural issues. And there are some people who will think my desire to get Seb the help he needs is over the top because he is just two. All of these people really don’t know Seb. I pick up that there is a lack of understanding, or judgement, and even conversations. After all, when you put that stuff out into the universe, it is easy to pick up on it.
So this blog is to share our life, so that others in similar experiences can relate, and those who care about us can learn and understand with more clarity. It’s to stop the fear people have around whether to say anything or not, for fear of saying the wrong thing, or not understanding what things mean. It’s to help change the way people see autism, autistics, and to understand the range of factors that occur each day, consciously and unconsciously, or why I don’t bother with make up and cool hair cuts, or why Seb and I are both sleep deprived! LOL! 🙂
Hopefully it provides insight, understanding and relatability, and makes an impact on not only our personal relationships with those in our lives, but maybe helps other families in similar situations.
I appreciate I have used terms here that some might not know of, as they have never come across such language or concepts before. If you are genuinely interested in learning, just look the terms or words up under google, and you will quickly understand them.
I hope this read has helped you understand a bit more, and hopefully our next blog will bring a different spin altogether. 🙂
Please know… to know Seb is to adore him. Every day is different, and understanding what his loves are and what brings him joy is just amazing. He is a very smart, fun little guy, and can be very funny in the moments you engage him. You can see this really cool personality he has, and when you get to interact with him in his strengths and enjoy connecting with him, it is rewarding. Firstly, my son is a human being, like the rest of us, who just happens to be autistic. 🙂