Where's the support?

Guest blog: Kyra Chambers, The Prism Cat

One of our past PDA Summit speakers shares her experience of late diagnosis and dealing with the barriers to Mental Health support. She shares how, ironically, a missed diagnosis could have saved her life. 

In recent years there has been an increase in the number of adults diagnosed with Autism Spectrum Condition as there has been more research into Autism and the ways Neurodivergent people may present beyond the classical male orientated stereotype. As we see this increase in diagnostics, there should be the hope that adult support services also improve but unfortunately, many of us are left without support, clutching our diagnosis letter with hope, only to be let down when looking for help. 

I live in the United Kingdom and I have been a client of the Community Mental Health Team for almost a decade. When I was first referred to the service in 2014 with suspected Bipolar Affective Disorder, I was fortunate to be under the care of a Community Psychiatric Nurse (CPN). At the time I was in the depths of a mental health crisis that almost claimed my life, and without this person’s support I wouldn’t be sat writing this today. My referral was fast tracked into the system and within a month of being taken on I had regular support. I had the same CPN for two years then moved to the care of another. This was initially difficult as I’d grown to trust my first nurse but the next put in a lot of work to develop our relationship (the first meeting they brought me some books, a sure way to my heart) and they were very good at accommodating someone who often struggled to regularly engage and participate in groups unlike other clients. I received home visits and bespoke care. As time continued though and funding to mental health services started to decrease or become less effective due to the sheer number of clients needing help, this began to have a knock-on effect to my care but there was still a regular contact at least once a month and more frequently in crisis times. 

As time went on and I began to suspect there was more going on in my psyche than Bipolar alone, 

I asked for an Autism assessment as well as questioning ADHD. This was met, not with disbelief, but an undercurrent of reluctance. It seemed difficult to ascertain exactly who was responsible for the assessment, and I was sent around several services before finally being placed on a waiting list. Almost two years to the day after my referral and four years after first requesting one, I received my Autism diagnosis following 6 hours of interviews and a review of my prior medical history. I was thrilled to feel finally seen. 

Attaining a formal diagnosis is a privilege. In many places it is simply beyond people’s financial means, or the assessment delivered by psychiatrists who still use outdated models and presentations of Autism to guide their judgements. Many psychiatrists do not understand masking or how functioning ability can fluctuate on a daily or situational basis. Many do not understand how Autism can present differently in cis-gender women, non-binary people, transgender people or those who do not fit a binary gender presentation.

Finding a neurodivergent affirming psychiatrist is like finding a pot of gold at the end of a rainbow.

Even though I’d seemed to hit the lottery win of having a fantastic psychiatrist, there was still a bump in the road ahead. A big one. 

I will always remember the day I received my diagnosis in person. I was sat in a room at the CMHT, my psychiatrist sat opposite me. She asked if I’d received their letter (sent a week previously) but I had not. I was on tenterhooks, chewing a bracelet of rainbow beads I’d worn for luck, so distracted that I actually missed the first time she told me. When she repeated her confirmation, I burst into tears. 

‘It’s okay’ she said,

‘These are tears of happiness’ I replied. 

As I sat there letting the news sink in, a confirmation of something I’d suspected for years, I expected something similar to what happened after my Bipolar diagnosis. Offers of help, support, understanding. Instead, with a grimace she informed me she was so sorry but there wasn’t really much support to offer beyond an outreach centre in a city 20 miles away. An impossible journey for someone who at the time struggled to travel more than a few miles from home and rarely alone.

Fortunately for me I did have one ace in my pocket, one I’d relied upon for some time pre-diagnosis, and that was peer support via community groups. 

Without the support of these groups, I certainly wouldn’t be doing the things I do today, writing about my experiences, taking various courses to gain qualifications to help support autistic folks and better understand myself, speaking at conferences and learning to deliver training. The autistic experience is extremely varied, there’s no monolith of what autism is or should be. Many of us also have mental health problems from a lifetime of trauma from being misunderstood, misrepresented or outright gaslit for our experiences. This is where the support and empathy of our peers through shared experiences becomes invaluable because finally you can connect with people who have had similar experiences, who share similar problems and you can talk of those without the shame or pity or false positivity that can be encountered by those who are not neurodivergent. Being autistic can be a very isolating experience but the peer relationships I have developed over the last six years have been the longest friendships I have been able to maintain regularly thanks to that shared understanding.

This year I also received my ADHD diagnosis after moving to a new area and having a new psychiatrist. This move has been a double-edged sword as although I now feel I have the right set of diagnoses, my new psychiatrist has questioned my original Bipolar diagnosis and as such removed my mood stabilisers and CPN support. This massive change, on top of the traumatic experience of relocating has adversely affected my mental health and seven months later I’m still battling through the pits of depression. Why are conditions such as Autism and ADHD seen as needing less intensive support despite the fact it is commonly known how we struggle with daily functioning, social isolation and persistent mental health problems as a result of years of sensory and social trauma? There are times I look back over the last decade and know that I am so lucky to have survived, to have dragged my way through so many adverse experiences and part of that is thanks to that original misdiagnosis and being given the support I did. Would I still be here writing this if they had gotten it correct in 2014? 

Going forward as a society there must be more support for Neurodivergent adults. Whilst not undermining the experiences of those diagnosed in childhood and those who were subjected to therapies such as Applied Behavioural Analysis and forced into compliance, those of us who are late diagnosed are the flip side of coin. We are battle scarred, weary and no less deserving of support, acceptance and compassion for the fact we’ve made it this far without an official recognition. 

Kyra Chambers is also known as The Prism Cat. You can find her on Facebook at https://www.facebook.com/autisticprismcat and on her (newly growing) website https://theprismcat.co.uk . You can also find all her social media and other links to articles at https://linktr.ee/KyraChambers