Towards autism diagnosis
Author :Monique Gunther , for ‘Spot A Childcare’
Looking back, my son displayed many signs of autism, from the very moment he was born!
Even in the neo natal unit, he appeared different from the other babies. Hospitalised for two weeks, he had a loud and apparently unusual scream that was instantly recognizable. The nurses could be in the other room and yet easily distinguish his scream. He would scream within seconds of having a wet nappy, and had trouble feeding.
He seemed to meet his milestones a little slower than other children his age, and some he never achieved. For example, he never crawled, but went straight to walking. He never babbled and chattered. A speech language therapist assessed my son. She concluded that he was capable of speaking, but was choosing not to. His baby book has a blank space next to ‘first word’. When he finally started to speak it was in full sentences. I went from having a silent toddler to having a toddler speaking in full sentences like a miniature adult. Even today he is using sophisticated language more suited to an adult. This is of course, a common trait seen in children with autism (ASD), however I didn’t realize that at the time.
Early childhood education highlighted the widening gap between my son and other children. He refused to hold hands with children, struggled to it still for any length of time and distanced himself from other children if they were sitting in a group. He responded well to certain teachers, and others he looked blankly at as if they weren’t even there. No one seemed to have any answers, but I wasn’t overly concerned as he was competent in many areas of life.
If early childhood proved to be challenging, my son’s entry to school was even worse. Here it became apparent that he was dancing to a different tune. He may have been enjoying school, but school wasn’t enjoying him. The social aspect of school proved to be a huge challenge. Staff at the school started using words like ‘naughty’, ‘active’ and ‘children like him’. The daily pickups were blighted with lists of all the ‘wrongs’ he’d committed that day. Eventually the special needs co ordinator asked if we could take him to a paediatrician, in search of some answers. I went home feeling judged and despondent. When the appointment card arrived, I didn’t hold much hope for any answers. We’d been to many specialists over the years for a variety of reasons, so this was just another routine appointment. I hadn’t emotionally prepared myself for any revelations, although that said, as a teacher I knew that he was displaying a few signs of autism, but he’d seen many specialists who’d never mentioned it.
The first battle was to get my son into the room. He hates hospitals, doctors and the smells and sounds that accompany them. Once we were successfully in the room the paediatrician asked why the referral had been made. I explained the school made the referral wanting ‘answers’. The paediatrician attempted to have a conversation with my son – who flatly refused to communicate. I asked the paediatrician what he thought. I will never forget his words, “he’s a special boy, he’s not like the other children I see in here.” I was shocked to hear that someone who’d never meet him could see his differences in a matter of minutes. I realized I had grown used to his quirkiness. Then the paediatrician went on to say that being different wasn’t negative. He explained his concerns about labelling children, and that he didn’t want a label to restrict my son’s potential. I agreed and stated I was only here because of the school. The paediatrician explained that my son’s file had been reviewed by a panel of paediatricians, and they were all in agreement that he had autism. Although this should have been of no real surprise it still rendered me silent for a few moments. Then, to my surprise, the paediatrician, continued, “after observing him, I suspect he also has ADHD.” Now that did surprise me. I truly felt like the rug had been pulled out from under my feet. One diagnosis I could handle. But two? We had really hit the jackpot here. Feeling shell shocked, we discussed the options from here – which in our country aren’t that many. A diagnosis of Autism would not change my son’s life – the paediatrician again reiterated that I needed to remain positive and not allow the diagnosis to be a limitation but rather to help understand my son. A diagnosis of ADHD meant that medication is a possibility. We discussed both sides of this and I decided at this time, I would prefer not to use medication.
I dropped my son back to school and drove home in a daze. I spent the rest of the day shell shocked. I realized that although the diagnosis shouldn’t be a complete shock, having a professional make a diagnosis was still quite upsetting. For some people it may be a relief – finally getting answers they always wanted. For me it just brought home how different my son is. I spent the next couple of weeks quietly grieving – not for what he is, but for what I thought he would never become. This is, of course, exactly what the paediatrician had warned against!
After a brief grieving period I immersed myself into research into ASD. I read books and articles and watched videos. I researched support services in my area and discovered there were none! The research was interesting, but confirmed my knowledge rather than grow it. That said, I always keep an eye out for any articles, etc, in case I find strategies/websites/products that could be of use. It is my responsibility to ensure I support my son in the best way I can, one of which can be by keeping informed.
Two years on, I have realized a diagnosis didn’t have too many tangible benefits for my son. He doesn’t receive help any additional help at school , and although there are some support services in our country, there are none in our area. In some areas there does seem to be a lot of support, with information courses, camps, therapists etc. A diagnosis has given me confidence. It has reassured me that I am doing things correctly, I was already using timers and visual schedules and was aware of sensory overload. It has also given me a starting point – I know where to look for information if I need it.
Getting a diagnosis has also helped me realize no-one knows my son like I do.
It gave me confidence in myself and my abilities, I can predict what triggers a meltdown, I can predict places that he will find stressful and activities that he will need support with. I am trying to teach him strategies to deal with everyday life. I will not let his diagnosis be a limitation, but I will allow it to help me to support my son to be the best person that he can be, whichever tune he chooses to dance to.