Undiagnosed Autism and Mainstream School | My Experience

Image title reads undiagnosed autism and mainstream school image to the right is of a young primary school girl (the author of this blog)

 The days are long but the years are short-
the most significant parenting quote i've ever read. I vividly remember thinking "I can't wait for Iris to start nursery, only a few more years to go". Being at home with young babies and toddlers is immensely hard work. To me it felt like my entire existence was being swallowed by a teeny tiny, snack monster. Constantly on demand, constantly needing to be aware and constantly being 'switched on'. It all felt so constant. So unending. Now nursery isn't a few years away, it's now and I'm not ready. It isn't because Iris isn't ready, she's been ready for months, she's been craving the structure and mental stimulation that only a learning environment can give and it certainly isn't because I'm not ready for the break- I am chomping at the bit to get some time back to re-discover myself and give myself the opportunity to work, exercise and be creative again. The reason I'm not ready for Iris to start nursery is because I'm not ready to deal with what 'school' means to me. I'm not emotionally ready to send her into the system that destroyed me.

School is a turning point in both children's and parent's lives. Some flourish, some flounder. I did both. I flourished in an academic sense. I loved the structure, the routine and organisation involved in schoolwork and homework. I was fully committed to achieving my education. What I didn't understand was that school teaches so much more than academia. School brings the need for social skills, emotional management and personal awareness. It's as much a journey of self education as it is journey of academic education. Having undiagnosed autism throughout the entirety of my school years meant my journey of self discovery was immensely painful. I was completely unaware of my social limits and the true reason why I couldn't relate to my peers. Since receiving my diagnosis I can look back and understand what happened and why but as Iris prepares to start her journey I am beginning to realise that although I understand my experience I have not yet healed from it.

Prior to starting pre-school I wasn't noticeably different to other children, only perhaps in that I was advanced for my age. I hit every milestone with ease. Excelling in speech and language. Exactly like Iris. The difference between Iris and myself is that I was painfully shy. Iris will joyfully play with others with no encouragement needed. I didn't. My mum has described me as 'always on the outside'. She recalls me hiding behind her legs and her friends even questioned if I had hearing difficulty as I would never respond to them. Pre-school was so distressing for me that they asked my mother to remove me for my own wellbeing. 

I began primary school with relative ease. I enjoyed the mental stimulation and I made solid friendships that exist to this day. There were a few bumps in the road though, I remember being distraught several times on a PGL school trip. We were away for a few nights and I spent the majority of the time in tears and being too afraid to take part in the activities. I can still remember someone saying 'what's she crying for now' and rolling their eyes. I can still feel how ashamed that made me feel. I remember the burning desire to be brave. To just be like everyone else. I didn't go on school trips after that. It was easier not to. 

Primary school was simple and organised. The same teacher, the same familiar classroom and the same classmates. Things were clear, explained simply and the social expectations were predictable. Secondary school hit me like a grenade. It felt like I'd exploded and there were pieces of me everywhere and each piece was expected to function.

I was still undiagnosed when I began secondary school. I was 11 when I first remember not being able to leave the house. I'd become paralyzed by fear. I physically couldn't get out the door. I couldn't explain myself as I didn't understand what was happening, all I knew was that 'a switch had flicked' and I couldn't get out the door. 

Now I have my diagnosis I can clearly see that it was a significantly overwhelming time. Different classrooms, different teachers and different classmates, the constant change several times a day led me to feel out of control. I felt powerless and like I couldn't grasp where I was. I still dream now about not knowing my schedule or where my classroom is.

I didn't understand the social hierarchy that existed within my secondary school, it simply did not occur to me to want to be popular. I spoke my mind when I shouldn't. I didn't let people intimidate when I should have. I was bullied to such a degree that they even stole my underwear during a swimming lesson. I was forced to go without underwear for the rest of the school day and endure people constantly laughing at me and trying to pull down my trousers. I thought I was weak but I think they picked up on that I was different, that I was vulnerable and that I didn't know the system and exploited that for their own entertainment. 

The aftermath of this period in my life was catastrophic. I'll go into it in more detail in a separate post but in brief my family relationships broke down, I became extremely withdrawn and developed a significant self harm problem as my way of coping. The school system was the catalyst that led to my diagnosis. School enabled my social and emotional difficulties to come to light and in that sense I am grateful but it was so incredibly painful. I wonder how much more simple things could have been with a diagnosis and the appropriate support. That said, my education never suffered and that was thanks to my lifelong friend Beth, who without fail brought my work home every single day and called for me every single morning, knowing that I probably wouldn't get out the door but believing in me anyway. 

They were dark times and that is why I sit here gripped with fear about Iris starting pre-school. I can't shake the feeling that I'm sending her into the lions den. It's so hard for me to trust the school system when it was so difficult for me but I have faith that times have changed. I need to remember that Iris isn't me, I need to try and separate my past from her future and look forward to this glorious opportunity that Iris has to step forward into the world and find her own way. There will be ups and downs but one thing is for certain, I won't let her suffer as I did. 

 Thanks For Reading 

Katrina Fox UK based parenting blogger. Writing about Coeliac / celiac disease, Aspergers Syndrome and Autism, Pregnancy, Parenting and both Childrens and Adults Books


  1. What an indepth and meaningful post of your experience. It's so sad you were undiagnosed for so long. I hope your post helps many in a similar situation x #KCACOLS

  2. Oh my gosh this is so heartbreaking reading your story, I'm so sorry you went through all of that although I'm sure it has helped make you the awesome person you are today. You are so brave for sharing and will no doubt help so many people :) #KCACOLS

  3. Thank you for sharing so openly and honestly about this, Katrina. No doubt your experiences will mean that you always have your daughters back, as she grows up and makes her way though the school system.
    I can relate to quite a few of the things you describe. I too was always academically strong but socially more of a misfit. Still, I was lucky to have a few good friends at all stages throughout my education.
    Thanks so much for linking up with #KCACOLS, hope you come back again next time! x

  4. I'm so sorry you had to go through that bullying at secondary school. just awful. and such a shame your diagnosis came so late. I think just having that knowledge now too will help with your little one. And you're right -the days are very long at the moment, and def with the non stop snack requests. #kcacols

  5. Oh bless you Katrina. What an awful school experience. I’m so sorry this happened to you. You’re so brave to share your story. I think if you’ve not gone through it yourself, it’s hard to really fully understand how painful and crippling it can be. Iris has an awesome mummy to look out for her, and I’m sure that will help as she progresses through the school years. #mischiefandmemories xx

  6. I think almost every child find school hard for various reasons. I hope that you have the strength to support your child without dwelling on the negativity of your own experience. Thanks for linking up with #MischiefAndMemories

  7. This is just heart wrenching. I am sorry that you had this experience. My daughter is 6 and as yet undiagnosed, but may be on the autistic spectrum. She certainly has social communication difficulties and anxiety that manifest in defiance and anger. The school are so supportive and are doing so much to help her, but oh how I worry... Thank you so much for sharing your experiences with us on #mischiefandmemories


Thank you for supporting me on my journey to raise awareness about mothers on the autistic spectrum. We do exist, we just need people to know we do!

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