Signs I missed my daughter was autistic when she struggled with school.
My daughter hated school. Every morning was a battle and I marvel at how I made it through those tumultuous days. Her morning routine had to be executed in specific order - if I had any hope of the drop-off going smoothly. I had to stay calm and put my anxiety of being late for work aside, while I mitigated the risks of a potential meltdown. My daughter has the ability to pick up even the smallest hint of anxiety on me and it was uncanny how she could sense my emotions at times. I walked a tight rope each morning to get her ready and out the door in time for her school and my work. When we arrived at school - usually late - she'd make a last-ditch attempt to delay going in. She finally relented by walking painstakingly slowly to face her fate, walking an invisible pirate ship plank into her classroom.
I was emotionally drained by the time I arrived at work.
Challenges my autistic daughter had in primary school.
An upcoming event or change in routine to school:
Getting her to attending school was the normal challenge, but anything out of normal routine of the school day would cause her additional stress.
Sports Day.
Her turn for Show and Tell.
Her friend not at school.
A class excursion.
She would talk about it more. She began mentioning it more frequently a few weeks before the event. This was good, because I could answer her questions and it gave her a chance to visualise it.
If it was an off-site event like an Athletics Day, I would drive her there before the day, so she could see the place and know where she was going.
Leading up to it, she began struggling to fall asleep. She would complain of headaches or tummy ache to delay going to sleep. I was patient because I understood why she was doing this, but those times were trying. I was exhausted and desperate for some quiet time in the evening.
More emotional in the mornings. She became dysregulated easier in the mornings - probably because she was tired. Her ailments would start up again as she tried to convince me she felt too sick to go to school. Not having the energy to fight some days, I'd take her into the office with me. I worked in a small office, and she would "hide" under my desk most of the day in a make-shift fort I made for her. I had a lot of work to get out, so this gave me the chance to get to work on time and not feel stressed when I got in.
I felt incredibly guilty doing this, but I could get so badly dysregulated some mornings, that I was grateful for the reprieve.
She became obsessed with finding the right item for an event. A red scarf for Sports Day, an item starting with an 'L' for Show and Tell. She obsessed about obtaining the specific item she felt necessary to be prepared on the day. It frequently involved us going treasure hunting at various shops, while I tried not to show my exasperation over the ridiculousness of the task. It didn't help explaining to her that a particular shade of red wasn't important, or that a replacement item would work. It was hard to understand the importance she placed on having the item, and what it represented to her.
I became a magician pulling items out of a hat and making them work! A discarded ornament with a red ribbon that I could weave into her hair worked well. I soon realised that it didn't matter how the item was obtained or from where - I just needed to think creatively.
She didn't want to go to school when the day arrived. With all the talk and preparation leading up to the event, our morning routine usually went smoothly. Her anxiety was there however, just brimming under the surface waiting to pounce.
I kept the mood relaxed and optimistic, like any other morning. I calmly reassured her, while distracting her enough, so she didn't allow unnecessary panic to seep in. It was a fine balance knowing when to listen and reassure, and when to redirect her attention and be firm, while staying enthusiastic.
I was a master performer.
What my autistic daughter struggled with when she started secondary school.
She was painfully shy when she first started secondary school. She generally avoided interacting with anyone, other than who she had to speak to in class. This limited her in meeting new friends and being social.
Not speaking up when she knew the answer. She wouldn't indicate that she knew the answer to a question in class. When we chatted in the car drive home after school, she would mention this to me.
Not speaking up for herself. Situations with peers if assumptions were made about her that were untrue. Not speaking up could make a situation worse, so I worried about her potentially being bullied. I was grateful that she trusted me enough to share this with me. I focussed instead on explaining how certain group dynamics could play out, and in identifying how certain personality types behaved in certain situations.
Thankfully she was never reactive to them, and they quickly lost interest in her. There were days when she came home troubled, but after we spoke about it, she seemed more relax and soon became distracted with something else. ADHD has its perks!
Preferring only one or two friends. She preferred to stick to the safety of only one or two people. I'm sure many kids do this, but with her it became a problem when her friend would not going to school the following day. This change of routine would unnerve her, and she would struggle going to sleep. She was anxious when she woke up and would complain of feeling sick to avoid going to school. She ended up going, but absolutely hated those days.
Enter The Mask: Needing a certain level of preparation before leaving the house.
This started when she was around 13 years old.. Getting ready for school was a painstaking effort for my daughter. The way her hair, make-up, jewellery right down to her clothes, had to be presented in a specific way. The only saving grace for this was that I didn't have to wake her in the mornings anymore. She'd set her alarm to be up earlier than usual to factor it in, so her routine could be executed in good time. This was fine until we overslept, or there was some change with her having to cut her routine short. She didn't do well with change, so this could trigger a panic.
She would only wear a few specific item of clothing out. Only a handful of garments were deemed worthy enough for her to wear out in public. This was fine, but if a particular item was in the wash, she would turn down an invite. I'm talking only 2 specific jumpers or one pants.
The rules didn't make sense to her. Her secondary school could implement a new rule without sufficiently explaining the rationale behind it, and this would frustrate her if it didn't make sense to her.
Having special interests that was the focus of everything she did. It became the focus of what she spoke about and who she spoke to, so her interactions were limited to people who shared her special interest. While this is common for teenagers as they discover new interests, my daughter was like this since little, and her enthusiasm and passion for talking endlessly about a topic without identifyfing if her audience was interested, put her at risk of being seen as "weird". Her special interest could also be a friend, an activity or a place.
She was in certain situations that troubled her and she needed more time to process. She once witnessed a teenager laugh at someone with special needs in a shopping mall. It deeply disturbed her to tears and she needed to speak about it at length with me before she could put the matter to bed.
Summary
Neither her Dad nor I knew that she was autistic.
I was more patient with her - because on some level I instinctively understood her fears. How I accommodated her needs felt instinctual, even if I didn't understand why. It would be another 10 years before I got my own autism diagnosis.
Parenting her through school was challenging. I struggled and felt guilty some days. I got many disapproving looks from family and friends for not "disciplining her enough" or "being too soft on her". I'm sure I made many mistakes as I clumsily tried to accommodate both of our needs.
Ultimately, I'm glad I trusted my gut and chose to gently parent, giving her love and reassurance instead of rigid discipline.
Autistic minds have to work so much harder to process additional stimuli and I have to wonder how many autistic children didn't get the nurturing they needed? How many of them have landed on a path that could have been avoided if they had received the necessary accommodations from a caregiver? If they hadn't received empathy and care from those close to them?
Today my daughter is a confident and bubbly young woman.
She will spot the loner in the room and go out of her way to befriend them and make them feel at ease. She is incredibly empathetic, and I worry about her coping in this world. I tried to toughen her up, but she is an alarmingly gentle soul. I would never have imagined her transforming into this person.
I know that not everyone is wired the same.
I hope that all autistic children can get the right amount of love, support and reassurance they need to give them the best chance of surviving in this cruel crazy world.