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Your dad always says, “I call you my perfect little boy, and you will always be that, no matter how big you get.”
My son (my first born) arrived two weeks after his due date; from that moment on, it was clear that he wanted to do things his way and on his terms – stubborn from the start. I had a comfortable and enjoyable pregnancy, and like most mothers-to-be, I was looking forward to meeting the amazing, wonderful person growing inside me.
After his birth, things progressed in what I thought was a relatively normal way; however, at age two, we noticed myriad unusual behaviours (often obsessive). They included constantly spinning around, watching the fan for long periods, and never getting dizzy despite this. He would also open and close cupboard doors, always in a sequence.
He became and still is obsessed with trains and buses. His toys were and still are almost exclusively trains and buses, which he used to (and still does) line up perfectly and then endlessly roll backwards and forwards. He would get extremely upset when a drop of water got onto his clothes, coupled with the need for dry hands and a dislike of certain types of material on his skin.
At two, he started talking using nursery rhymes. He knew them all by heart and was upset and firmly corrected us if we repeated a rhyme twice. He also wanted to be inside when the other children were playing out and developed high academic interests when he was very young.
The most alarming thing, and the one that made my tummy turn, was when he started running into a corner, crying and screaming when he heard a motorbike or any other loud noise. These and many other seemingly small behaviours were realised, a possible indication of Autism.
What is Autism?
Autism is not a disease, illness, or sickness. It is a developmental condition where some people are born with brains that are wired and work differently from what is considered the norm. It is not recognised as a mental health disorder, but it has been shown that many people with Autism are prone to depression and anxiety, which can lead to mental health issues.
Some Autistic individuals often have sensory sensitivities – for example, they might like feeling or touching particular surfaces or objects. They might get upset if they are not allowed to handle them. Conversely, they may dislike certain clothes against their skin, which may cause discomfort or pain. They may get upset when they have a sensory overload if too much is happening around them; it’s too bright or noisy.
You could say that for them, it is like ‘being a cat in a room filled with barking dogs!’
You may have heard talk of high and low functioning Autism and may wonder what that means. Autism Spectrum Disorder (ASD) works on a spectrum – a scale between two extreme points, meaning that individuals with ASD will vary dramatically.
Some children and adults with Autism can navigate the world with little assistance. These are the people who can attend ‘normal’ mainstream schools/universities, maintain jobs, live independently, have relationships, communicate verbally, and have only mild challenges compared to others on the spectrum.
As we progress along the spectrum, individuals face more complex challenges and often, their disabilities are more visible – this may include trouble communicating as well as being extremely withdrawn. These individuals frequently require more assistance with performing functions like planning and remembering schedules and routines and are often dependent on their parents/carers throughout their lives.
There isn’t one definition for Autism. That is probably the most challenging aspect of being part of the autistic community; no two parents or caregivers are going to have the same experiences.
Adapting as a Parent
As new parents, there is much to learn, however, as a parent of a child on the spectrum, the learning process can be very challenging, but when you get it right, oh so rewarding. I feel blessed but at times frustrated when trying to find the best ways of communicating with him. It is a balance between understanding what is symptomatic and what is just him being a mischievous little boy?
It can be an emotional roller coaster as you try to understand their perspective on the world let alone deal with it successfully, such as:
- Not understanding why he is having his emotional meltdown but also worried and concerned about other people making judgments about him when we are not around to support him. We work hard to make sure he has the tools to defend and manage these situations for himself. If he is going to be as independent as possible, we need to know that he will be able to look after himself!
- Learning through experience that his senses may be heightened when he feels distressed. For example, when he started school, he demonstrated his distress by licking walls and putting sand in his mouth – something he had NEVER done before. We now know that as a child on the spectrum, he will react to the sensory overload of change by raising his other senses as a protection mechanism.
- It is upsetting to know that when he is going through this, he is feeling anguish and pain, however, as a parent being practical and dealing with it is imperative. I immediately met with the school to make them aware of why these behaviours were happening. The school was very supportive and put strategies into place to help him. We keep a constant eye on it and work closely with the school to mitigate the effects of any impending new/significant change(s). We are privileged to have a school that understands and works really well with him and us.
- Like all children with ASD, he is prone to sudden mood changes. It can happen instantly, without warning. If something is not working the way he wants, or you ask him to stop doing something he likes, BANG, he’s coming at you with a face like thunder and a balled-up fist. Through trial and error, we have found ways of dealing with this before it turns ugly. The best thing is to make him laugh then, go back to the subject and address the situation; if not, it is war!
However, if he is doing something dangerous, we go down to his level, hold his hands, explain the dangers very quickly, and play out his reactions to minimise the anger until he understands.
- We always have to plan ahead and inform him of a new situation. What we have found that works well for both in and out of school is to get down to his eye level, hold his hands and inform him (sometimes using picture cards) that ‘this is now, and this is what is going to happen next’.
Whilst we are aware that we have been extremely privileged because of the support we have received, we know that many other families have not received this. We understand that our situation can change, and we need to keep on top of his care and not be naïve to the present and the future.
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Adapting To Fit into the World
Whilst my son has his challenges, he is ‘high functioning’. However, he sometimes has difficulty expressing himself, communicating his feelings, and looking directly into my eyes, something I hope will happen spontaneously one day.
He is learning how to adapt to the world. When he accidentally bumps into his little sister, he will comfort her or bring her to me, but the emotions are limited. It seems like he is saying, “there, there, kiss, kiss, now bye and back to my play”. He knows what he should do but doesn’t seem to have an emotional connection. This emotional disconnect means he is adapting to what he thinks he should be doing because society demands it, not what he would naturally do; this is called ‘Masking’.
This masking is common for people with autism; they pick it up as they grow and do not operate in the same way as those around them. Given this, they try extremely hard to fit their round peg into the world’s square hole. This can result in awkward handshakes, awkward small talk, and close standing (invading personal space) when attempting to mask their difference.
People on the spectrum are doing what they have learned they are expected to do, not what they would naturally do – learned behaviours with no feeling or thought behind them; no wonder they have difficulty ‘getting it right’. Some individuals know that handshakes and small talk are expected but are uncomfortable when having to do it. They also know that they prefer to avoid interpersonal touching (like handshakes or hugging); this sometimes causes them to overcompensate.
Some say that girls are more difficult to diagnose with Autism because they are better at ‘Masking’ to fit in with society, but masking comes with a cost.
As I wrote this blog, I learned more about masking and its mental health effects on our autistic children. Now I find myself talking to my son almost daily, trying to ensure he is himself and not conforming to what others want. If he wants to do his ‘stimming’ (self-stimulating behaviours, usually involving repetitive movements and sounds) or make his train noises, I join in even more than I did before; because this is him; this is what makes him comfortable. It gives him freedom and what he enjoys, and I love seeing him in his element.
The World Will Just Have to Adapt
My son has made me more understanding and empathetic when I see a parent struggling with their child(ren), as I know from experience there can be more to that child’s behaviour than meets the eye.
Because people can be unwittingly judgmental (or even alarmed) when dealing with behaviours outside the norm. I find myself explaining to strangers after he has run up to them screaming, making transport noises, or asking them a question about their travels and informing them of where they should be going and the best transport they should be using; “Oh, he’s on the spectrum”. Maybe I should stop this. My travel guide informative son can be over-friendly and fails (like most on the spectrum) to recognise boundaries. This can be intrusive and discomforting to strangers, but I think they have to get used to it as more information comes out about autism.
As parents, we take on all the challenges one day at a time. As he grows, his triggers and ‘stimming’ will change, and we will continue to learn and adapt with him along with his (and our) journey. Like one of his grandmas’ says, “The world will just have to learn how to adapt to him!”
My son is my son, and I’ve never seen him as anything other than perfect. Even when other people would say to me, “Oh, he is very active”, it didn’t faze me, I just see him as my son, and that was that; maybe because at the time, being my first, I had no other to compare him with. It wasn’t until we realised that Autism could be part of him that we began to understand that there would be ongoing implications for him and us.
A Hidden Condition
As parents, we want to ensure our son participates in all our family experiences, and we continue to develop strategies to ensure that he can.
For example, as a church going family, when my son was younger, we would sit at the back so that I could manage his quirks and stimming without too much distress to him and disrupting others. As he grew and his behaviours changed, we learned to adapt and find different ways to manage his idiosyncrasies.
At the time, he wasn’t able to manage the noise of large crowds, so we had to be mindful of that and leave when there were too many people coming or going; therefore, as he didn’t want to sit inside the church, we would stand at the back. His tremendous interest in public transport meant he would move from one door to the other or observe the buses from the glass door. Unfortunately, as his condition is ‘hidden’ we were told off for ‘health and safety reasons’, even though I was clearly observing, managing, and instructing him. I later calmly explained that my child was in the ‘process of being assessed for autism’ and the complainant’s attitude changed, and she had a little talk with him. However, the following Sunday, we were again challenged, and I had to explain once more. It felt like because his condition was hidden, it didn’t exist. Like many people on the spectrum, my son doesn’t have a sign on his head declaring his Autism; resulting in assumptions being made and criticisms leveled – unfairly judging both him and us as parents.
Our story will be familiar to all with Autism in their family. We need to make awareness of hidden conditions more apparent, so that my son and others like him don’t have to continually bend themselves out of shape, to fit in with the expectations of others.
I was proud to inform the parents of my son’s class about his Autism and to share some positive stories. I was pleased with the positive responses, questions, and comments, for example, “Oh, that’s why Jack said that about your son”. That parent could now sit down and have a meaningful conversation with their child about how and why some people can be different. I firmly believe that as parents, we need to be part of the process of increasing awareness and understanding of neurological differences.
Another Milestone on our Journey
Even though we had known for several years that our son was on the spectrum, it didn’t change the powerful emotions his dad, and I felt when on the 15th of December 2020, the Pediatrician officially confirmed that our son was on the Autistic Spectrum. The tear gates almost opened, but I held them back. It was a relief that we had final confirmation and that all our efforts to have our son properly assessed and diagnosed had been successful.
We were one of the lucky ones, for we had support along the way from doctors and his school; I know that other families have not been so fortunate and have been battling for years without success. If the school is not supporting you, see below for services that can help in the UK.
Getting Diagnosed, Help and Support
If you feel that your child has Autism, there are a few suggestive recommendations you may want to consider.
- Get the help of an advisor to examine your child’s education curriculum. This is called an Educational Health Care Plan (EHCP)
- Get advice if you think your child might be autistic or if as an adult you need support.
- Finding help and information and connecting with others in the same or similar circumstances. National Autistic Society or Autism Society or Autism Alliance or Child Autism or if you are an adult with Autism Jigsaw Plus
The BMA estimates that 700,000 people in the UK have Autism. This is excellent news. It means that we are not alone.
Thank you for writing such a personal and detailed insight into your life and experiences with Autism.
Sharing a personal perspective gives us so much more understanding than science alone.
I have learned so much from your words about Autism AND about judgement – something we all do even without realising at times. We all need to keep working on our flexibility and acceptance of others different from ourselves in all areas of our lives.
Your son sounds like an amazing young boy. The world is blessed to have him in it. x
Thankyou for sharing your experiences very helpful!
Thank you for sharing, he’s very lucky to have you as his mum and to have such a loving and supportive family !
That was very touching, thank you so much for opening up and sharing your experiences. ‘Masking’ seems to be such an awful thing for an autistic child to feel they need to do. I pray that we as a society become more aware and accepting of autism. As you say, ‘the world will learn to adapt.’ By writing this blog you are enabling that change. Once again thank you so much for sharing, you are an amazing mum.
What a lovely, caring and direct from the heart article. More positive articles need to be written about this. Love it