Now I know

I noticed your story in the Now I Know campaign and I want to thank you (and the others) so much for sharing your story so openly. More awareness is needed on the issue and even amoung the health professionalsin the mental health system.

I was diagnosed at 35, approx a year after an overdose that had left me critically ill.  I had no hope, diagnoses that did not fully relfect my reality and treatments that failed. Like you, I was also blamed and also accused of a lack of effort. In a way, I can see why they thought that but it wasn't helpful. I felt like I was being slammed into a wall repeatedly but I was not able to communicate that. 

I had vaguely suspected possible underlying autism just prior to the major overdose but it felt pointless to bring it up and I just didn't know enough about it. It was too much to try communicate when I couldn't even address my immediate distress and wobbling thoughts. I felt trapped in a system that could not understand me.

I finally sought out private therapy once I had recovered. Firstly, it really helped to have someone sit with me and take time to really listen and explore my distress. It helped clear some of the fog and process my thoughts. After a year or so, the therapist suspected autism and encouraged me to refer for an assessment. The assessment by the most reputable team I could find was very expensive but I needed to know I would trust any result. It was very thorough, involved all sorts of tests and family interview.

The reaction from my family was that they expected tthe autism diagnosis. Strangely enough, I struggled to accept it once the diagnosis started to sink in. I studied the report over and over, and picked out little details. It was a hard to process and accept after all of these years.

All those details of significant social, communication, restrictive and functional issues and history were never uncovered. They existed, my family knew they existed but no one actually asked. They never formed any part of any assessment, not even for screening or signposting. It is upsetting to know there are still others out there too.

There is no pill, treatment or cure. Some doctors give that as a reason not refer patients for an assessment, but that is nonsense and that attitude must change.

I am more comfortable with expressing who I am. I can share my interests openly, and I feel more free to be me. I can better identify when I am overwhelmed and why. I can also understand my communication issues instead of getting frustrated.

I am typing so much now! But I am just so happy to see this campaign and I really hope awareness improves. I have also found out autism is very much part of my family history, including both diagnosed and undiagnosed. A whole world of understanding exists that I never knew about, and I wish I did earlier.

Anyway, thank you so much for sharing your story and the other wonderful women and non-binary people in this campaign. 

Thank you for the positive response.

I think what makes me most sad and most cross about our stories is that like you I would still be nowhere with this without a private assessment and private therapy.  The services who were supposed to help me not only let me down, but damaged me more and it costs thousands to undo the damage, eh?

What about all those people who have no financial means to do this?  The system leaves me fuming for them and it's kind of why I feel so passionate about this.  We need change because people are hurting, and they have no help.

I really understand what you are saying! I spend so much time thinking about this - what about the other people who haven't been so lucky and are just stuck with no understanding or appropriate 'support'? I firmly believe there must be more pro-active action to identify those lost in the MH systems with misdiagnosis. But there seems to be limited will or resources to do so.

I felt like I got lucky to find my answer but it was hard and expensive. I was at a dead-end in MH with no hope, no real understanding. I didn't know what was happening and had limited ability to advocate for myself or say no to things I knew I couldn't handle.

I hope this campaign can at least maybe reach some of those people and give them information to relate to, that may allow them to question and advocate for themselves. And hopefully, where needed, they start to feel able to find their truth somehow.

I really understand what you are saying! I spend so much time thinking about this - what about the other people who haven't been so lucky and are just stuck with no understanding or appropriate 'support'? I firmly believe there must be more pro-active action to identify those lost in the MH systems with misdiagnosis. But there seems to be limited will or resources to do so.

I felt like I got lucky to find my answer but it was hard and expensive. I was at a dead-end in MH with no hope, no real understanding. I didn't know what was happening and had limited ability to advocate for myself or say no to things I knew I couldn't handle.

I hope this campaign can at least maybe reach some of those people and give them information to relate to, that may allow them to question and advocate for themselves. And hopefully, where needed, they start to feel able to find their truth somehow.