“a light bulb moment went off for me after I was so burnt out with life and I realised I was autistic too, with APD. I was 48. My life suddenly made sense but I was shocked to realise that not one single person had noticed and I had masked my whole life”

Name: Mrs E
Age: 40-49
Location: North East UK

I was a content, happy baby. I loved to sleep and I reached all my milestones; I was walking around 9 months. As I toddler I loved to escape and I would be in the sugar bowl constantly. I even took my goldfish for a walk at 3 years old. I hated my mum playing music and would cry and cry for her to turn it off – the loudness was awful. I played a lot with younger kids as I loved being boss – I felt in control then, but I also remember spending a lot of time alone in my room. My younger brothers both had special needs so they would take up all my mum’s time. I hated the chaos, so I lived in my room. I was a sensitive child but gobby with people I trusted.

During primary school, I remember struggling to focus at story time and getting bored. I would often chat way too much and I often got told off. I changed primary schools three times, so it was a lot of change for me and an unsettling time, but I did like my third one.  Only vivid trauma I have was playtime when I was forced to drink warm milk or I couldn’t go outside. I remember the awful smell and the look of the milk in a glass bottle made me gag. I refused to drink it so I was often kept in. To this day I won’t drink milk, only in my coffee.

I remember going on a school trip in year 6 and I hid under the bus seat, crying, whilst my mum waved me off. She had no idea I hated every minute of it.

Middle school was traumatic. I hated it and it really destroyed my self confidence. I wasn’t popular and only had 2-3 friends. I was very shy and quiet and bullied a lot. I was always last to be chosen in P.E. as I was rubbish at sport. Dinner times and break times were super hard because I would panic if I didn’t see my 2 friends. They were like me and we did gel, so being separated was always tough. If they were off school sick, they were my worst days – school was hell for me then.

When I moved to secondary, I decided I didn’t want the same trauma, so I changed – I became gobby, class clown and always in trouble. I soon realised this made me more popular as it made people laugh. I also remember not liking certain teachers – they thought they could push me around but I retaliated badly. I also got my own back on the main bully. I was suspended twice.

I hated art, maths and languages. The only subject I really enjoyed was English as I would write and write and write – I loved a good story. But I could never focus on lessons. I found too much information at once overwhelmed me and I never seemed to process the information because background noises distracted me. I now know this is probably why I didn’t do well and achieve good grades – I had no support.

During my adult years I would binge drink at weekends, go clubbing and smoke. It made me more confident and happy. I had my first child at 19, I met her dad at 15, and was a single mum at 21. I loved every minute and she was an easy child, thankfully.

I always struggled to commit in relationships; I loved my own space too much, so I had a lot of casual ones between 21 and 30 years old. I often went in and out of depression and tried to commit suicide in in my 20s.

In my 30s I settled down, had another 2 kids, another daughter and son, and I married. Sadly, that marriage didn’t work out – we’d been through too much to survive. It wasn’t until we separated that a light bulb moment went off for me after I was so burnt out with life and I realised I was autistic too, with APD. I was 48. My life suddenly made sense but I was shocked to realise that not one single person had noticed and I had masked my whole life.

My daughter was diagnosed with ASD and SPD at 13. She’s also awaiting ADHD assessments. Then there is me with ASD and APD at 48. And my son also on the pathway for ASD and dyspraxia – he’s 10. We are all high maskers with different but similar needs.

I hate…
Sudden change
Too much choice
ON the spot questions
Intimacy, unless on my terms
Long periods of eye contact
Loud talkers, shouting, screaming and blasting music
Runny egg yolk and a lot of meats
Spicy foods and foods I don’t like the look of
Cheap sugar-free soda and juice

I love…
Calm and peace
Safe foods – I love pasta, salads, Heinz tins – it has to be Heinz

I sleep well but my head often feels cluttered and I struggle to switch off. I can’t follow verbal directions or DIY instructions. I need time to process information – driving is a struggle for me because of this. I communicate well. I overshare but I struggle to express my emotions and explain them.

We are all very different and we don’t all fit those ticky boxes. My advice is to follow your instincts and always tune in to yourself. Know what you need and always check in on your kids. Listen to them and remember that you know your child best. Professionals aren’t always right. Be firm and know you don’t need a diagnosis in order to get support.