Parents of children with suspected autism are having to wait at least 44 months for a diagnosis
“Parents of children with suspected autism are having to wait at least 44 months for a diagnosis, prompting a cross-party group of more than 140 MPs to write to the health secretary, Jeremy Hunt, demanding urgent action”, taken from an article in the Guardian. Read the full article here.
How many more findings like this is it going to take for the Government to accept that just as early diagnosis for many other medical and neurological disorders (e.g Cancer, Alzheimers, Stroke) saves and improves the quality of life, as well as being a key predictor of positive outcomes children with Autism?
Seeing that the average wait time for an Autism diagnosis is 44 months, drew me to pull up data from one of the children we work with.
At twenty-two months old her parents were told she was too young for an Autism diagnosis and they should wait, as it’s likely that she is slow developer and she’d be fine. Her mother was not satisfied and called us for an initial assessment. We are not diagnosticians but within 30 minutes of observing her and talking to the mother, we knew that all was not well and 3 days later we had an experienced Masters level ABA tutor in her home working with the little girl for 20 hours per week.
Kudos to parents for following their gut instinct and got support because despite the immense progress she made that led to several professionals doubting she’d get a diagnosis of Autism, a couple of months ago she did! Ironically, just weeks before the diagnosis we were trying to convince the nursery manager and LEA representative that our support was needed.
We can’t bear to think what this child’s functioning would be like without early behavioural intervention. Just as it is accepted that a failure to diagnose certain health conditions early decreases the chances of saving lives, the Government needs to accept that failure to diagnose Autism early is a missed opportunity to enable individual’s to achieve greater outcomes.
Graph 1 below is her data within the 1st 5 months of ABA therapy. The black labels show that the skills she had at age 23 months and represented a significant delay in her development. To put into context the bottom part of the graph are all the skills you’d expect the majority of 18 months old to have. This little girl was no where near ‘ticking all the boxes.’ I have a son a few months younger than this girl so for me I didn’t need a graph to tell me she was delayed. The yellow labels show the gains that she made during the 1st 5 months of us supporting her, she was still delayed but she was closing in on the gap with her peers, as she was presenting with the skills you’d see typically see in children age 1.5-2.5. We are in the process of updating this assessment again. We have no doubt that most of her skills will be age appropriate.
Graph 2 shows the significant reduction in her behavioural presentation. The black labels demonstrate the learning barriers that prohibited her from developing and learning at an age appropriate level. These barriers were high in all areas at initial assessment. The yellow blocks show that with our intensive support many of those barriers had decreased to a level significant enough for her to make the gains represented in graph 1. (graphs taken from VB-
MAPP Assessment, Sandberg 2008.
It’s true that all of our young learners develop at different rates and we always celebrate the within child progress but what we have come to know through experience is that the younger we meet these children, our chances of making a difference and improving quality of life are increased.
Whether we are talking about diseases of the body or disabilities of the brain (mental health, neurological or neurodevelopemental) then quality of life is what counts! We look forward to actions from this review and support for evidence-base interventions.
