“Yabba!”
Not so much a word, as a subdued sound. My eldest child sits upon my bed playing some rhythm game on their iPad. I am at my desk, my back to them. My eldest is autistic.
“Yabba,” I quietly respond.
Modes of communication
My eldest may have level 2 autism. The higher support they need means they may never be able to hold down a job, and while they may well be able to live independently, those elevated support needs could mean they will struggle to live alone. We are already coping with self-harm, and a number of other expressions of a young, neurodiverse brain trying to cope in a world built for neurotypical people. Dressing the wounds of a distraught child in the small hours of the night, while trying to explain how the world works in a way they can understand, is something no parent should endure.
The exchange
This simple Yabba exchange is common among autistic folk. It’s a form of echolalia, that is, the repetition of words, phrases, or sounds spoken by another person. For my eldest, it is a form of delayed echolalia. Despite the simplicity of the word, the meaning is complex.
The autistic community is often labelled as lacking social skills with a seeming inability to read various cues in tone, body language, and facial expression. The reality is much more about how these cues are interpreted.
“Yabba” simply means “I am here”. An indication and an acknowledgment of presence. In other situations, it could mean “I am stressed”, or “I am excited”. The interpretation comes directly from their emotional state: are they stressed; are they excited?
For me, an autistic adult, the interpretation is simple. My response relies heavily on context. A reassuring tone, an over-the-top exclamation, or perhaps the deployment of a ‘dad joke’ by responding with “dabba doo!”
And if I am feeling overwhelmed, with no spare cognitive capacity, a simple echolalia response is practically an autonomic response. No mental effort needed on my part. A useful trait if your own mental world is collapsing around you, something that a child, regardless of neurotype, is likely to pick up on. “Yabba: are you OK? Yabba: I am here.”
Living with autism
Over 50 years of living with my brain has taught me that the bottom can, and will, fall out of your world, and life will continue. Depending on the root cause of the problem it may take time before life returns to a new normal, a new OK, but it will get there.
For most of my life I was just labelled as odd, even by my family. I have been asked “are you even human?” on several occasions. For my 48th birthday, I received an autism diagnosis. As birthday presents go it was a welcome one as it put much of my life, and my life experience, into a new context that made it easier for me to process and understand.
A new diagnosis
Since then, my youngest has also been diagnosed with both autism and ADHD. Unlike my eldest, he has a diagnosis. I feel for him, as I know what struggles the autism will bring, and I can see the extra layer of complexity ADHD introduces in his life. He received his diagnosis at the age of nine. For him, the biggest takeaway was that “[he is] not annoying, just different”.
My youngest is 11 now, and in the intervening two years we have built a number of coping strategies. He will remove himself from situations causing him stress. He is aware that his brain has a tendency to forget things when he walks out of a room and is not afraid to come back in and ask, “What was I doing again?”
Both my youngest and I were diagnosed through the Right To Choose programme. This gives those who live in England the legal right to choose which NHS provider carries out autism (or ADHD) assessments.
This is important because Norfolk and Suffolk NHS Foundation Trust has faced severe, long-standing criticism and repeated regulatory interventions regarding sub-standard care, high caseloads and cultural failings, leading to ongoing reform and investment efforts.
A different experience
But for my eldest – the child sitting behind me saying “Yabba” – the story has been very different. They do not have a diagnosis yet. In part this is because, unlike me and their brother, they were born female. Historically autism has been associated with young, white boys. That these boys grow up to be men has, until recently, been largely overlooked. Adult diagnosis pathways really only became routine from 2000 on. Research published in 1981 highlighted that females could also be autistic.
Autism and women
Autism presents differently in females. While I had done a huge amount of independent research on autism for both my diagnosis and for that of my youngest, this was based on the research for males. As puberty began to hit, I realised that my eldest may be more profoundly autistic than either me or their brother.
The modern medical diagnosis for autism splits the conditions into three levels based on support needs. Level 1 autism has the lowest support needs; level 3 has the highest. Both my youngest and I are level 1 autistic. I have managed to live a relatively successful life, and I have generally managed fine. I expect the same for my youngest, although the ADHD may give them a harder time than I had.
On a more practical level, my eldest is fast approaching GCSEs. We home school them as mainstream education was unable to provide a suitable learning environment. It raises questions that will eventually apply to both my children. So, do I push them to obtain the best grades possible and set them up for life in the workplace? Or is this a pointless endeavour? Do I start trying to adjust some of the coping mechanisms they have in place in preparation for a world that won’t understand them, or do I leave them as something that will genuinely aid them through life?
Getting a diagnosis
Our local GP agrees that my eldest needs a diagnosis and the relevant level of support. So, I put in the Right To Choose… and nothing happened. Somehow, we dropped off the waiting list. But the mental health nurse got involved and the process was kicked off again.
As the months rolled on, we would enquire and be told we were still on the list. And then after a patch of particularly poor mental health for my eldest, we were reprioritised. We were put on additional lists. Assured that we are at the top of those lists. Told that the only higher priority was if our child was hospitalised. So, we waited…
And then we were told that policy had changed. That we needed to wait for April 2027 for more funding, and then we could be put back on the lists. Along, I assume, with everyone else who had just been bumped. Eight months before we could find out where on a waiting list of more than 18 months we would end up, after having already waited two years.
Still no diagnosis
So we’re going private. Thankfully my relatively successful life means I am able to find the £2,000 this will cost. A cost that will reduce the waiting time from months, or even years, down to four to six weeks. It’s the same provider who would have done the assessment on the Right To Choose path. The difference is the money is coming from me. I suspect getting to this point has cost the NHS well over £2,000 in staff costs.
Perhaps my biggest concern revolves around suicide. Credible studies have shown that incidents of suicide are generally higher in autistic folks than the rest of the population with some studies showing that the suicide risk of autistic females is over three times higher than for non-autistic females. To the autistic brain the world can be a scary place. I know, I’ve lived in it for over half a century, and the fact I have survived this long is a surprise to me. I also know my eldest has no long-term plans as they cannot envisage a future with them in it. A demon I have fought many times.
No answers for all
I am lucky. I am in a position to throw money at the problem. To get my child the best support and care I can. But what of other parents, caring for their young as best they can? They know that support could be years away and worry that the gap until crisis support is available may be too large and their child may not receive the help they so urgently need.
“Yabba?” my eldest asks. Aware that I have stopped typing. Aware of my change in posture. I turn, tears running down my face. “I am scarred too,” I reply, “but I am doing everything I can.”
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