"Misdiagnosis & ASD Awareness"

It took over a year and a lot of discussion to decide if I should write my feedback, but I feel it is now the right time.

I was diagnosed with an autism spectrum condition last year as a female adult in my 30s. This was done after almost two years of weekly private therapy exploring my difficulties with life and an assessment with a panel of national autism experts, who also interviewed my family and looked at my childhood, but which was at a huge financial cost. The therapy alone helped me feel supported and heard which saved my life when I had nowhere else to go - and adjustments were made to assist with communication and misunderstandings, and I write things down when I need to.

Although I was diagnosed with depression and anxiety with social phobia many years ago and I agreed with this (and still do), an underlying picture was missed with the CMHT which led to a huge amount of misunderstanding, unhelpful advice and increased pressure to engage in activities that were beyond my capacity.

My psychological state continued to deteriorate. I was already struggling to manage day to day life as an adult trying to live independently with undiagnosed developmental condition. I asked for help and I wanted to overcome my difficulties, but various things were said to me which seemed judgemental and often dismissive, which is unhelpful to someone in the depths of depression. I was even told that I didn’t have much stress in my life by a nurse who barely new me, but I didn’t have the understanding or words to say exactly how wrong she was.

Although, this wasn’t always the case, some showed more understanding than others, including a time when a male nurse took the crisis risk issues seriously and sent me for a hospital admission which I attended, but then it was agreed with the duty doctor to try some intensive help from the crisis team instead, which turned out to be less than helpful as they had a familiar attitude towards me and I ended up back where I started.

I am now aware my communication difficulties complicated the misunderstandings, but I am also not as frustrated as I once was. Although I think labels can be very unhelpful and stigmatising, I needed to know and people in my life needed to know why I experienced the world the way I did, as previous attempts to understand myself didn’t make much sense in the end, including why I spent much of my school and college life perpetually confused, exhausted and unable to speak, or why I wasn't interested in the usual teenager things, despite being well behaved to the point I’d be distraught if I inadvertently broke rules.

The diagnostic report said it hopes it will provide closure and was help me to develop better coping mechanisms and receive appropriate support. I am more hopeful that it will once I am able to process more of what it all means for my life. I am already making grains in that area, as I am now able to communicate when I am overwhelmed or frustrated and why (e.g. being flooded with information I can’t process or struggling with communication issues, sensory, etc). My relationships are closer too. My GP now allows for extra appointment time to take pressure off me, which I am thankful for. Little adjustments make a big difference when dealing with people

Autism awareness needs to improve in the services. No one correctly picked up what was going on for me. My second and final request to find suitable doctor to look at my case was dismissed as an interpersonal problem in the end, when I had valid reasons for doing so – although perhaps I did not communicate those well enough. I hope the renewed (2016) SIGN guidance for referrals for diagnostic assessment for adults with ASD will improve things. I knew something was missing with my case because the CMHT’s understanding of me was so far off. Other people in my life agreed with this but they were not listened to either.

I don’t believe most of the problems I encountered were particularly personal. I understand services are stretched, but I can’t help but feel failed by a system that was meant to help. Other issues were also missed, including obsessive/compulsive issues which worsened after my overdose in 2015 after difficulty coping with my hospital recovery concerning brain injury, and sudden change of environments again (which I struggle with). Since then I was left without any NHS mental health care and then discharged without being informed or having my new medication reviewed. If I did not have the funds to seek private support, I would not be here today.

Finally, I must also be clear that rushing someone to give answers to questions is unhelpful, such as saying “it is a yes or no answer”, or “it is a simple question” while I am trying to process the question and form/organise my thoughts and then answer. I would often rush answers because I wanted to be compliant, but that was at the expense of accuracy. Although, I understand it was not known I was autistic and may have required more time than other people to aid communication.