A is for AUsome...
“Does he tend to focus on one thing for a long time?”
“Um…What do you mean?”
“Does he get stuck on one thing and do it over and over? Like spinning the wheels on a toy car?”
“No not really, not more than any other child his age…”
I had already entered defensive mummy mode by this point, having realised what the health visitor was hinting at. So what if Kalel didn’t enter into a role play with her when she asked him to give the teddy bear a cup of tea? He didn’t ever play with teddy bears at home, so what did she expect?! Yes, he wasn’t able to draw a straight line down the piece of paper as she had shown him, but he had done some lovely scribbles instead- plus he had never really been interested in mark-making for longer than a few minutes at a time, so hadn’t had much time to practice.
Many parents who have visited the health visitor for the two year check will know the feeling of vulnerability when you present yourself for their brief snapshot assessment of your child's development (and tacitly your parenting skills), and this occasion was no different. Add to that the judgemental and patronising comments that she directed towards my husband ("and do you do anything to help mum around the house? Kids really benefit when their dad spends time with them"), and it was easy for me to dismiss everything she had said with one stroke. My confident dismissal of her veiled implications meant she didn't press any further, instead advising us to attend the Speech and Language drop-in clinic, and arranging a home visit to our house in a month’s time.
I eye-rolled and scoffed in the car on the way home to my husband, perhaps trying to reassure myself more than him: “She was totally trying to imply he is autistic!” She had clearly hit a raw nerve, and truth be told- I was worried about a few things with Kalel's development, but spinning wheels on toy cars wasn’t one of them. When he came together with his peers he wasn’t speaking like they were- At 26 months he had the odd two-word phrase but mainly single words which were unclear, and often still used baby sign language to make his needs known. Usually when he was happy, but sometimes with no obvious trigger or cause, he would scream and make loud vocalisations while he flapped his hands, which amused him greatly but often made the surrounding adults flinch and give the passing "what's wrong with you?” glance of judgement and disapproval. He often covered both his ears with his hands, prompting me to examine his ears with my otoscope, but finding no sign of infection or inflammation I put it down to tiredness. At times we could call his name repeatedly when he was sitting close by and he wouldn’t respond at all, as though he hadn’t heard us- but other times he would respond to even the quietest sound, making it difficult to put his lack of response down to a hearing problem.
When he was visiting a children’s playgroup with his childminder some time later, an early years worker observed him playing and raised a few further concerns: his tip-toe walking, and how he mainly played alone away from the other children. She said these could be signs of autism, but wasn’t keen to jump to any assumptions and wanted me to call her for a chat. This time it hit home.
A few internet searches later, and I was ticking off more signs of autism that I could clearly see in Kalel. It took us a while to realise that “no, no, no King Bob!” which he would use as a generalised phrase indicating dissent, was in fact a line from the Minions movie, and was typical scripting, or echolalia- the repeating of words or phrases which often occurs in autism. He would frequently talk about himself in the third person. He couldn’t stand certain audio frequencies, like the hand drier in public bathrooms, and the vacuum cleaner when particular attachments were used. He had special interests that went beyond what you might expect of a three year old, like stones (which he would collect from outside, carry around all day in his hand and frequently take to bed), and a yellow rubber duck that he did not let out of his sight for months, including during a week abroad on holiday. Often changes from one location or activity to another (from the house to the car, or the car into to the supermarket) were very difficult, and we didn’t go anywhere without his favourite oat bars in our pockets to use as a bribery tool to ease the transition. As he moved from toddler to pre-schooler his dietary repertoire narrowed and stayed extremely limited- he had a main rotation of porridge, baked beans, dry granola, oat bars, toast and peanut butter and honey sandwiches. Despite our best efforts, fresh fruit & vegetables didn’t get a look-in. To this day his only source of fruit and veg is from two specific flavours of Innocent smoothies (home made in the blender will not do, and any occasional attempt to introduce a new flavour is met with an immediate and persistent refusal). The difficult thing is that in isolation, or even in clusters of two or three, these behaviours could occur in any neurotypical toddler or preschooler, it’s only when they occur together that they start to paint a picture.
How did I react, once I realised Kalel was very likely to be autistic? Well…I’m embarrassed to admit it now, but I had a pity party. I mourned the life I had envisioned for Kalel, which I thought had now slipped though my fingers to be replaced by an unknown and scary future where he would never quite fit in. I felt tears well up every time he did something odd or unusual. I cried as I calmly managed his meltdowns whenever he became overwhelmed. I wondered what I had done to cause this - was it my diet? I was super-fit when he was conceived, having just trained for a half marathon- but I still wondered what else I could have done better. I looked at other children his age who were happily chatting away to their parents or engaging in back-and-forth role play, and felt a twinge of resentment.
The turning point came about a week later, when we went to get my daughter’s 4 month injections. Kalel would not stay in the doctor’s waiting room, and kept screaming while running for the door to escape. I felt the judgemental stares of other patients as I chased after him time and time again and he ignored my repeated requests to stay next to me. The nurse giving the injections could see that I was upset, and asked me what was wrong. Within seconds I was sobbing as I explained that I had recently realised that Kalel was autistic, as he opened every cupboard he could reach in the consultation room, and enjoyed the banging sound as he slammed them shut.
I appreciated her comforting words and manner at first, but my inner warrior mama was soon roused when she said, “If you pray to God, he could grow out of it”. Putting aside her misguided assumptions about my religious belief, the unprofessional nature of her statement, and her ignorance of autism as being a lifelong neurological difference, I realised that I didn't want him to "grow out of it". His quirks are what makes him him, and I wouldn't have him any other way- he is happy, healthy, and not in any pain. He has an enthusiasm for life that shines through- whether jumping up and down as he watches Pharrell's "Happy" video on repeat, shouting with joy as he chases bubbles, or navigating his way with ease around the iPad to watch cartoons or play a game. Despite not always knowing how to manage social interactions with his peers, he is friendly, affectionate and thoroughly enjoys the company of his little sister. In that moment I realised that his biggest obstacle in life will be other people's attitudes towards him. He will have to navigate around their assumptions and break out of the limitations they will automatically place on him when they discover he is autistic. I had to get over myself, and fast, if I was going to be of any use to him as a guide, advocate and defender against all types of ignorant bullshit that the world will sling his way.
I reminded myself that we chose to home educate our children precisely because we didn't want them to grow up on the factory production line, where academic success requires unquestioning conformity, peer pressure replaces individuality with a desperation for "normality", and only a few of the nine types of intelligence are valued.
We want to nurture and celebrate their individual quirks that make them stand out from the crowd, to give them the time and space to discover their talents and find their place in the world. A friend recently told me how within two weeks of starting school, her 4 year old son came home and told her who the "naughty" children were in his class: the two autistic boys. I have no interest in sending Kalel to school to be misunderstood, labelled and then denied the extra support he needs because the teachers are overworked and whichever government of the day has decided to cut funding for special educational needs (again). He deserves consistency, patience and room to jump, dance and explore the world in his own way. It is an honour and a privilege to be able to give him those things, and I am grateful for that opportunity every day.