The Effect of Delay in Autism Diagnosis

We’ve been asking parents to share their experiences with obtaining an Autism diagnosis for their child and the effects that delay can have.
In this article one family tell us their experiences.
.

“Our daughter never slept easily. Midwives, health visitors, GPs, all offered advice and we tried everything. Our health visitor finally advised me to have one night a week in a hotel to save myself. Our daughter was apparently thriving, despite the lack of sleep, and no one had any other suggestions or reasons why.

Going into toddlerhood, cuddles were hated, eye contact wasn’t comfortable and things had to be a set way, e.g. the right plate, fork and spoon, sandwiches cut neatly into squares and on the plate in a specific pattern. However, speech was well developed, she practically taught herself to read fluently by age 2 and a half, and she could identify and add numbers ridiculously early. The nursery school were astounded and heralded her as a genius – so what that she preferred adult company and had some quirks? By this time her younger brother had arrived and he did elicit a closer relationship, rough and tumble, eye contact, etc. We didn’t worry.

In the first year of primary we noticed an increase in tics and obsessive behaviour. We mentioned autism, but the class teacher asked “why label?” and we decided to watch and wait. The teacher was particularly good at explaining why rules existed, why, in an emergency; our daughter couldn’t do her buttons up in a set order and take her time in the way she liked. Our daughter apparently thrived, becoming sociable and less obsessive. It was a classroom environment and teaching style that suited her – had it been different, we might have seen problems earlier, who knows?

As primary progressed we saw increasing abdominal pains, later diagnosed as infant migraine. We now know it was likely due to the level of stress she was carrying. Academic progress was exceptional until the junior classes, when she seemed to stall. It was put down to focusing on social interaction, later to laziness – always the argument was that she was a high achiever, she’d catch up easily when needed, she was already so far ahead it wasn’t important. Writing became a problem and we (at home, via support lines, and Google) diagnosed dysgraphia. This seemed to explain a number of ‘symptoms’ we’d seen and we dropped all thoughts of autism. We requested intervention from the school SendCo – it was by this time her final year at primary and her class teacher firmly believed her attitude was the only problem. The SendCo never observed, never assessed.

Our daughter chose a secondary school where few of her friends were going – she wanted a new start. The first year was wonderful: top classes, after school clubs, positions of responsibility. In Year 8 a number of things happened. Puberty hit and her body began changing in ways she was uncomfortable with, GCSE options had to be made and teachers were constantly pushing for ‘future plans’ to be made, peers were starting to form relationships, to talk about who they wanted to go to the Year 11 prom with and who they wanted to marry. At the same time, her brother fell ill with ME/CFS and so she lost her closest playmate and, as we now realise, social support.

The lack of sleep began to catch up – she had only ever managed 6-7 hours a night, although now older she would rest quietly and not disturb us. We contacted the school regularly with niggles – she’s exhausted today, she has a migraine today, she doesn’t understand what the teacher said, another child has been teasing her, and so on. The GP advised us to stick to waking her at 7am – on no account to ‘give in’, as this stage is just normal teenage stuff. By Year 9, grades had plummeted and after school activities diminished. Following a viral infection that seemed to be the straw that broke her, she was attending school only in the afternoons and we were receiving letters threatening court action. We asked repeatedly for a referral to the ASD team locally – the GP argued it was the school’s responsibility, they argued it should be the GP. We spoke to organisation after organisation, trying to join the dots.

We concluded she has high functioning autism, she has learnt to cover this, but has become utterly exhausted and unable to function fully. The school made the referral. Weeks later we have received a letter advising us it doesn’t give enough information to earn an assessment and we have now submitted our own evidence. We are told the wait, if granted an assessment, will be over a year – by which time she will be over 16 and will have left school, and will have to be re-referred to an adult team. In the meantime, the school are trying – but staff still ask her ‘when do you think you’ll be better?’ and her Autism Champion mentor forgets to turn up for appointments. The belief is that she is coping well – staff don’t see the fall out, or appreciate that her ‘good’ behaviour is just trying to fit in, and carries huge cost.

Interestingly, I recently bumped into some staff members from her primary school. I told them we were waiting for an ASD assessment. No one was surprised and all nodded and said it had always been pretty obvious. The huge question then is, why, oh why didn’t anyone mention it? The answer I suspect is that she was achieving educationally and behaving well, neither she nor I were making a nuisance of ourselves.

The current system encourages our children to make themselves ill, to fall seriously behind at school, to lose friendships, to take themselves to the brink before anyone helps. We have supported and protected our daughter, but in doing so we have continued the charade – allowed her to pretend at school and fall apart, unseen, at home”.

If this has struck a chord with you, we’d love to hear your story. Please get in touch with sarahj@cerebra.org.uk.