Amie

I really enjoyed hanging out with Amie, like many autistic women, she was diagnosed late as an adult, which has such a huge effect on confidence and self-esteem. I really hope that in the future, the diagnostic process for women and girls becomes less complex and more accessible. At 7 years old, Amie was diagnosed with epilepsy; she has an intense love for science, however her epilepsy has restricted her from working in hazardous environments like laboratories. When Amie’s seizures became more infrequent, she started her career as a pharmaceutical dispenser to fulfil her interest in science with the aim to complete her NVQ3 in the future. Amie’s story has inspired me so much; her tenacity and self assurance is something I admire greatly.

‘Hi, my name is Amie, I'm 34, and I am a late diagnosed Autistic female.

I first realised I was likely Autistic after seeing a documentary at the age of 11 or 12. After gaslighting from parents, teachers and Doctors (no you’re not, every kid feels different, it’s just a phase etc etc) I put it to the back of my mind and grudgingly accepted that no one would ever believe me.
It wasn’t until I was 17/18, when another documentary reignited my previous concerns and convinced me that there was no way that I could not be autistic.  The more I researched it, the more determined I became to get the referral I deserved.

After numerous GP appointments, begging and pleading for an assessment, the closest I came to achieving my goal was one Doctor shrugging his shoulders and saying ‘yeah, you probably are’. I’ll never forget that.

I would have likely persevered trying for years (that’s just the kind of person I am) had it not been for a chance inheritance when I was 21. I decided enough is enough and started researching private assessors and found the Dilemma consultancy in Sheffield (now based in London).  

Finally, I got my appointment. I was terrified. Was I now paying for yet another person to tell me that I was making it up? Sitting in that consultation room, I was made to feel completely at ease. It honestly felt like someone was listening to me for the first time in my life. We went through everything - my childhood, school life and my current life, nothing was left out. I completely broke down when Dr Tantum told me what I already knew to be true. I felt validated.

In 2009, my diagnosis of Autism, ADD and Generalised Anxiety disorder cost over £900.

I felt so much joy after my diagnosis, but I was probably slightly naïve. I had gone in there thinking if I just had a named condition on my medical record, maybe the NHS will finally support me and what I'd been through. But no, there was nothing. No support for adults unless you are a deemed a burden on society AKA high support needs AKA low functioning AKA severe autism.

Now, over 10 years later, I had hoped we had progressed in terms of accessibility to diagnosis through our beloved NHS.
How wrong I was.
Yesterday I was talking with a gentleman on Facebook, about the same age as me when I had my diagnosis. His story broke my heart. It was like de ja vu. It hurts so so much because I never want anybody to experience what I went through at school. I am in tears as I write this because it just feels like nothing has changed.

There is no support in this country for late diagnosed adults or high masking kids that slip through the net. It just feels like the NHS goes by the rule that if someone has made it this far in life without diagnosis then they have no reason to help.

The morality of ‘high or low functioning’ is still a big problem. In the eyes of our healthcare system, those deemed ‘low functioning’ have their autonomy taken away from them through over care and those deemed ‘high functioning’ are told that they do not require support at all. All of which is utterly ridiculous seeing as how one day an autistic person might be on top form and be perceived as ‘high functioning’, then crash when they get home and be unable to function at all. The opposite can be true of ‘low functioning’ individuals, where the majority of the time they may struggle, but the moment they have a chance to shine, their care could be retracted and may choose not to risk aiming too high. Autism daily life support should not be an ‘either or’, it should be there when we need it. It needs to take in to consideration that capability may fluctuate on a daily, or even hourly basis.

I’m lucky in some respects. I’m confident, outspoken and persistent. I have a strong sense of justice and when I know something is wrong, I’ll just come right out and say it – I hate all dimensions of injustice with a passion. It’s safe to say I talk about Autism A LOT. Education, awareness and acceptance are high on my agenda. However, I know many other Autistic people don’t have my combination of personality traits (no two autistic people are the same) and I fear too many undiagnosed kids and adults are just being swept under the rug.

That’s why I won’t stop talking about Autism, it’s not just about me.’