A Stitch in Time: the Benefits of an Early Autism Diagnosis

29/08/2024 by Help for Psychology Adult, Autism, Child and Young Person, Diagnosis 0 comments

This blog post is written by our guest writer – Joseph Edge

My name is Joseph Edge and I am 22 years old. I am currently a PhD student at Birmingham City University, working on a thesis about Autism Spectrum Disorder (ASD) and romantic relationships. I was diagnosed as autistic by Dr Judy Eaton when I was 6 years old, and this is my story.

I was born 14 weeks premature and spent the first 3 months of my life in an incubator. The doctors warned my mum that some sort of difference was inevitable, so it was no surprise when I was eventually diagnosed as autistic. However, even though this was expected, it did not take away the challenges we all faced.

When I was asked to write this piece, I wondered what I could focus on to sum up 16 years of diagnosed autism. This article will focus mainly on my time at school, as I feel that is a significant part of my childhood and an important one to share.

Starting with Monday, write the days of the week.

School, in general, was a huge source of anxiety for me. New people, different sounds, different smells and an ever-changing schedule. I attended a small, one form entry primary school from 2005 until 2013, and a general secondary school until 2018. It is easy for autistic behaviours to be written off as lazy or bad behaviour by teaching staff, especially in situations where children have no one-to-one support, and lessons are tailored towards a general audience of 29 other people. I remember, prior to support being put in place, often feeling overwhelmed and upset by the expectations put on me by teaching staff, and their inevitably sour reactions when these expectations were not met. An example that sticks in my mind is when, in primary school, we had a spelling test. It was Year 1 and we were learning the days of the week. I had, of course, practised my spellings in the week leading up to the test and was looking forward to confidently demonstrating my skills. However, when the test started, the teacher gave an ambiguous instruction. They said “starting with Monday, write the days of the week”. So, I did. I wrote ‘Monday’, and patiently waited for her to announce our next spelling, ‘Tuesday’. However, this did not happen. Reflecting now, the instruction was to write the days of the week, all at once, starting with Monday. I, however, could not comprehend this as the instructions were not specific enough. This resulted in a phone call home, where the teacher asked my mum why I didn’t learn my spellings.

My mum, thankfully, explained that the instructions that were given were too ambiguous for me to follow. There were many situations like this throughout my time at primary school, until I got a Statement of Special Educational Needs (now an EHCP) in Year 3. From this, I gained a 1:1 support assistant who was a great source of help and support. I found that having someone advocate for me at school helped a lot, and her specialist knowledge enabled further understanding from the teachers.

For the first time in school, I found a place where I felt like I belonged.

The transition to secondary school was challenging for me as I went from one classroom to several, and from one teacher to so many it was hard to keep up! The SENco was brilliant, though, helping me create a personal profile to give to my teachers and vice versa. I find new introductions difficult, and it helps if information is shared prior to an event/meeting so that I don’t ‘go in blind’. What I didn’t plan for, however, was the influx of new people I suddenly shared a school with, and how misunderstood I was going to feel by my peers. I speak with honesty when I say that I was bullied throughout my first couple of years in secondary school. I found that people in the older years did not understand me and saw me as sticking out. However, in Year 8, my drama teacher arrived at the school and changed everything. I had an absolute hatred of after-school clubs and extra-curricular activities, mainly because they were not timetabled and were often unpredictable. Yet, in the spirit of challenging the anxiety, I was persuaded to ‘give it a go’. It turns out that not only did I love theatre but my drama teacher, Nikki (not her real name), was an incredible source of support. For the first time in school, I found a place where I felt like I belonged, and I was understood by a subject teacher. Nikki and I would go on to build a wonderful working relationship and she would often advocate for me when times were hard. From thinking I couldn’t do it, to winning the Drama Award in Year 11 highlights the importance of how one person can change it all. I felt heard.

During this time, I also suffered severe separation anxiety from my mum. I liken it to completely forgetting the concept of object permanence; my anxiety was so high that I believed if my mother went out, for example, and I could not see her, then she was dead. This created desperate situations for me; I found it impossible to stay in school without regular ‘touch points’ with her. Eventually, we agreed that she would phone the school every 2 hours to check-in, so that I had reassurance she was OK. Of course, this put strain on her day, too, and it left us all struggling! Without the unwavering support of the school reception team and SENCo, it genuinely would have reached the point I was school-refusing, simply due to the anxiety and overwhelm it caused me. Their understanding of my autism was an integral part of our communication, and that understanding helped me retain my place in full-time, mainstream education.

If life has taught me anything so far, it is that autism can be a gift.

I found that, with understanding, I was able to achieve. Extra time, reasonable adjustments and key adults all helped me. I am now studying at Birmingham City University as a full-time PhD student on a fully-funded studentship. If life has taught me anything so far, it is that autism can be a gift. Yes, I still face daily challenges that many neurotypical people do not but with help and support I manage. If you take anything away from reading this, let it be to never underestimate the positive impact that trying to understand can have on an autistic child. The adults who listened, who saw the world through an autism lens, helped to change my life.

A message from Dr Judy Eaton:

It was lovely to meet Joseph again after my talk at the Autism show at the NEC recently. At the time of his assessment I was working at the Meadow Centre in Solihull, which was one of the first multi-disciplinary autism teams in the country, and where I met some of our associates who still work with us. At the time we were trailblazers, and it was exciting to be part of such a new and innovative initiative.

Seeing Joseph after all these years, and hearing how well he has done, and how his early autism diagnosis shaped his life in a positive way, underlines the importance of a ‘stitch in time’. Understanding and support can clearly make a difference.

If you suspect your child may also be autistic, then you are very welcome to use our FREE autism screening tool for initial feedback. Please note, this does not oblige you to use our other services, or book a formal assessment.