High functioning autism slipping between the diagnosis and education gaps. Part 1

Here’s my story….

A beautiful, funny, intelligent and very creative little girl starts screaming at bath time. She doesn’t want to have a bath. It’s a flatout NO! I don’t know how to get her in the bath at all. So, sometimes I try, sometimes I don’t. My strategies sometimes work — sometimes they don’t — dependent on the day she has had it seems.

I start to take notice if she is at childcare on the days she seems to struggle, or whether it has been something else that may have triggered that response. But, as soon as I have these thoughts, I also start to question myself. Surely it’s just an off chance? So, I buy different tools for the bath, I try different methods — morning or night bath. I try different temperatures, and I try different methods to wash her hair (because at 2.5 years old the food sticks well!).

Screaming, became the normality for many things — going to bed, as soon as we left childcare, going to the doctors or if she was left with anyone she did not feel comfortable with. It got to the point where we had to change childcares because the workers couldn’t help us get her ‘comfortable’ at the start of the day and she stopped wanting to go. We couldn’t undertand it…

But you have ‘friends’ there, who you really like, who you seem to connect with? So what’s wrong? We went into the childcare to ask whether there had been any significant changes — and we were told no and that was it. We changed childcares at that point, to one that was closer to home. It was still hard to drop her off — but the workers were much better at capturing her before the explosion of upset.

This broke our hearts everytime we dropped her off.

We started to notice things she did that seemed different to other children. When we walked home from childcare if it wasn’t the EXACT same way each time I would get ‘told off’ by her, and she would get very upset. At that point, I would say, “This is the shortcut so we are going this way”. Of course not knowing that this affected her more than I’d know — and not going the same way would affect her anxiety and for the rest of the night!

When we went to the swimming pool, she would really struggle to connect with her swimming teachers. We always felt like we were introducing her every week to the same person. She did not want to be left — which was fine — that was apart of separation anxiety right? But it did seem an extreme reaction at times — we had NO idea that she was SO sensitive to others and their energies and this was her intuition screaming she did not ‘feel safe’. Lily experienced a relief swim teacher that affected her so much and frightened her — demanding she do something in her lesson that even at the age of 6 she refuses to do swimming lessons.

Playing beside children at the swimming pool or playground became a significant experience— we could see her looking at them to work out to see what they were doing and then playing around them. On a playground she would tell us very abruptly she didn’t want anyone else on there and preferred to play on her own — unless she really connected with a child. We would sometimes walk up to a playground and if there were other children on it she would ask to leave and go home.

At this point I was in a social work placement at a disability support organisation and I started to pick up some other things she was doing as possibly not typical — lining things up obsessively became a constant occurrence, cutting tags off her clothes because they annoyed her, feeling extremely ‘hot’ and needing cooling down all the time, needing to ‘wiggly worm’ to calm herself, change really rocked her, she needed to know exactly what was going on all the time and her memory was INCREDIBLE!

In Melbourne, many parents sent their children to kindy at the age of 3. We decided we would do this to see how she would go — and she also had creative dance and swimming lessons that she went to. My whole idea of this was, well she seems to be so grumpy and struggling to go down to sleep so maybe she’s not tired enough? So if we do *all* the things — then she may go down easier.

In heinsight, we were actually causing the opposite of overstimulation but we had no idea — at 3 years old it seemed normal she would struggle to go into kindy — in fact she never settled at all, she never had a close friend there and it wasn’t something she seemed to enjoy at all. By this time, I was

By that time we had decided to move back home to Adelaide for work and family purposes. At 4 years old when she started kindy was a positive space for her as she made a friend. It was a lovely environment, where they truly cared for the children and their families. They welcomed the families to have their say and brought a real sense of community. This was where Lily blossomed — she had a routine when she went in for the day and this became an enjoyable place for her.

At this point we had a strong idea that she was autistic. From when she was 2–2.5 years old when she started to show some signs that we thought weren’t typical and then a friend had suggested it was a possibility from her own childhood experiences. We took Lily to a GP just after her 4th birthday. Due to autism being in the family and what we told them, it was suggested to see a paediatrian. At the time we had only just moved interstate and I did not have work so we opted to go into the public health system.

From August 2016 when we first saw the GP, we did not see the Paediatrician until February 2017. The paediatrician had no issues suggesting her for an assessment with the CAT team. Once again, we went through the public health system and we were booked for an assessment February 2019. We were lucky, because someone had cancelled and we were able to see the CAT team in December 2018 and by then, we had an ASD diagnosis.

So without my friend talking to me about what was happening, I was very unsupported by everything that was going on. I knew something was not ‘typical’ but nobody had seen it in the services they would usually pick these things up. Even the kindy had only picked up that she plays around other children. It was all seen as ‘development’ but she will probably develop those skills — because everything that was happening was *AT HOME*.

However, within that time, we had found our strategies with her — we had shifted our whole life to make sure that she was not so overstimulated — to make sure her sensory needs were met as much as they could be, I still fought for shower/bath time, I could not even touch her hair/head due to pain she felt, she was having issues eating much more than very bland food, she was emotional and stressed at what seemed like small issues and very anxious if something was not planned — as she could not predict what may happen.