Nick McAllister

Like most babies, Jacob Otter was speaking a handful of words by the time he turned one.

But that all changed when Jacob reached the age of 16 months, when he suddenly went silent.

"We noticed a dramatic decrease in the few words he could say, until after a very short time he wasn't saying any words," she said.

Worried about his development, Ms Otter took her concerns to a paediatrician who told her not to worry, and to "wait and see".

"At two years old, Jacob still would not say any words and when we took him back to the paediatrician, our concerns were dismissed again," she said.

"When I brought up the possibility of Jacob being autistic, I was told 'he's not autistic'."

Worrying too much, parents told

As first-time parents, Ms Otter and her partner discussed their concerns with family, friends, and doctors – but were told they were worrying too much.

"We were very concerned that our son had started saying words and in a matter of weeks, he lost all of his words, started sleeping poorly and became very limited with his food," she said.

"We had one doctor tell us: "Are you doing things that will make him speak to you? Maybe you should withhold items until he asks for them'."

Ms Otter thought it was her fault she was not doing enough to help develop his speech.

"My initial reaction was to agree with the health professional. He said it in such a way that meant he knew more than I did," she said.

"I then began to get frustrated that he would not even consider contemplating autism. I felt very dismissed and like I was an over-protective parent, searching for things to be wrong."

However, Ms Otter ultimately trusted her instincts as her son's primary carer to seek further help.

"Once I had assessed the situation at home, I realised that I was the expert, I was there with Jacob every day and so I should be the one who knows what's going on," she said.

"This is why we got a second opinion."

Jacob was eventually diagnosed with autism level 3, which is characterised by severe deficits in social communication skills and extremely inflexible behaviour.

Society relies on vocal communication

Psychologist Sandhya Menon said while just seven per cent of a message was delivered through speech — compared to 38 per cent through tone of voice and 55 per cent through body language — the spoken word was still crucial to communication.

"The best thing we can do for a non-verbal individual is to give them access to robust augmented and alternative communication (AAC)," she said.

AAC includes any existing speech or vocalisations, gestures, manual signs, and aided communication such as iPads or other specialised devices.

Ms Menon said parents and carers of those who are minimally-verbal have higher exposure to stress and are therefore at higher risk of carer burnout.

"This is often because it takes trial-and-error to establish a communication system," she said.

"Parents may feel out of their depth, exhausted, and frustrated when on this journey, with the constant-ness of it all and comparison to non-disabled individuals being the primary thief of joy."

Speech therapy an 'eye-opening' experience

Ms Otter said the family, who live in Newcastle in New South Wales, did not listen to the doctor's advice to withhold items as they thought it would be cruel and unhelpful.

"We sought speech therapy, which was a very eye-opening experience," she said.

"The therapist taught us how we could integrate communication-building into everyday play activities."

Ms Otter believed the most successful strategy the family employed to help Jacob's communication was getting rid of the expectation of speech and letting him develop at his own pace.

"We would name items and incorporate speech in a fun, musical way," she said.

Ms Otter said Jacob is happy, full of energy and a loving boy who enjoys being outside or near the ocean.

"He is now six years old, and we are now able to figure out ways to communicate, and this has allowed Jacob to feel less frustrated and happier," she said.

"He goes to a school for kids with a disability and loves his weekly special-needs gymnastics class."

'Don't wait and see'

Ms Otter said hindsight was a beautiful thing.

"If we knew what we know now, we wouldn't have waited so long and agreed to wait and see how he progressed," she said.

"That waiting period was very hard on us as parents, thinking we did something to cause Jacob's lack of speech.

"However, had we of known sooner, we wouldn't have torn ourselves up as much."

from https://www.abc.net.au/news/2023-10-28/jessica-otter-jacob-otter-autism-minimal-verbal-/102991486