Doctor doesn’t always know best

Another day, another disheartening shitshow on Twitter. What I’m referring to is this thread, in which an autistic woman, @LakeZenobia, tackles celebrity doctor Dr Christian Jessen  about the harmful representation of autism in Netflix’s new show Atypical.

What followed was sadly inevitable. @LakeZenobia made a number of excellent points about the difficulties women, trans & non-binary and PoC face in getting diagnosed with autism. She made points about the sterotypical view of autism and gender bias and how it harms women. Our Doc blatantly refused to listen to her and dismissed her points as opinions.

jenni

Whilst this is enfuriating on it’s own – here we have yet another male doctor not listening to a woman who is explaining her own lived experience, it is characterisitic of the wider problem with women being belittled, dimissed, ignored and undermined by medical professionals. This attitide is toxic; it is harming us.

Autism and ADHD are massively underdiagnosed in girls and women (and PoC), which can result in serious mental health problems. Women are more likely to be affected by an autoimmune disorder, yet it takes years to be diagnosed. Women’s pain is ignored or not taken seriously, something I can personally attest to (that is a story for another time). Until fairly recently the medical profession were missing heart attacks in women, as they don’t present like men. The British Heart Foundation now issues a symptom list for women. Whilst researching this I found a paper on how sleep apnea symptoms in women were being disregarded by medical professionals.

Is is any wonder we’re tired and angry? Is it any wonder we will call you out when you are clearly have no idea what yo are talking about? Medical proessionals: please, please just shut up and listen.

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Some thoughts about the AQ-50

After my diagnosis last month my sister, two years younger and with lots of similar problems, went to her GP and presented her case for being referred for and ASD assessment. The GP was very supportive and has agreed to refer her. She used her AQ-50 score (46/50) to support her case.

Both my sister and I suspect our Mum is on the spectrum. She has lots of sensory issues which stand out the most, also social awkwardness and poor fine motor skills. Mum wanted to do the AQ-50. I downloaded a version onto my phone and let her have a go.

She scored 30/50, but there are problems. Mum is profoundly deaf, and has been since childhood. She has a condition called otosclerosis, as well as psoriasis inside her ears. So she couldn’t answer questions about following conversations or hearing small noises others can’t. I suspect she would have scored higher.

Which leads me to my point: he AQ-50 doesn’t take into consideration things like deafness or other disabilities. If Mum wanted to go assessment she’d have an ever bigger uphill battle than most, which is pretty awful.

One Month On

It has been one month since I got my diagnosis of ASC, and a year (on the 18th of August) since I had my breakdown after a spectacular meltdown at work. I was signed off and put on anti-depressants

My diagnosis has helped me frame some of my past experiences through a different lens. I now understand why I do not cope well with change, ambiguity and uncertainty. I now understand my sensory issues – it now makes sense that I’ve not left the house without headphones for over 20 years, and why I never open my curtains.

I’ve also found an amazing community of late diagnosed people on Twitter (on the #actuallyautistic hashtag) which has been life affirming. I know it is a cliché, but I feel I have found my tribe. After 32 years of being misunderstood this has been massively postive for me.

In terms of telling people – close friends and family know, and a couple of people at work know too. I’ve got an Occupational Health appointment next week to talk about accommodations at work. I’ve been in my current role a year, and I’ve never been so ill in my life. I’m wondering what the effect of constant sensory overload has on overall health? Because that is what I’m dealing with. I’m also diabetic, and stress/anxiety makes it very difficult to maintain good glycaemic control. Something to talk to the doctor about…

The report my Clinical Psychologist produced suggested CBT with a practitioner trained to work with autisitic people, as well as speech therapy, as per the NICE guidelines suggestions. My GP was not hopeful about me being able to access these services as tey are not commissioned by my local CCG. Note to self – don’t be autistic in West Yorkshire!

 

#actuallyautistic

I realise it has been a while since I last posted. However, a lot has happened.

This week, after battling for almost a year, I got my diagnosis. I am ofically, 100% definitely autistic! My offical diagnosis is Autistic Spectrum Disorder as per the DSM-V but a few years ago it would have been Asperger’s Syndrome.

I will write more about my experiences as an adut woman trying to get an assessment, however, in short: I ended up paying for a private diagnosis. I had to borrow the money, as I am broke. It cost £600 for a 3 hour assessment over 3 sessions with a very kind Consultant Clincial Psychologist who understands how women on the spectrum present, as well as how we learn to compensate and mask our difficulties.

I thought I’d have some sort of emotional reaction – relief, happiness even, but nothing. Yet. Perhaps I’m still processing, or perhaps I’ve always known. I self diagnosed after months and months of research, so I guess that this was a cofirmation of something I already knew. It was a good experience in the end though.

To other self diagnosed people – if you’ve done the research, and you are sure you are autistic, chances are you are correct. You know youself better than any clinician. Your self diagnosis is valid, and if you feel that a formal diagnosis is something that would benefit you, go for it.

Treading water

I’ve always felt different. I can’t really explain how. I have always struggled to some extent to connect with people my age, especially other girls (and now women).

When I was very depressed and essentially not functioning I began researching how to be a functioning depressive. That is when I came across articles about girls and women on the autism spectrum. I felt as if I had been hit by a ton of bricks. It is not hyperbole when I say life has not been the same since.

I was reading these articles about so-called “high functioning” women on the autistic spectrum. It was like reading a description of myself. I was stunned. So, I read the NICE Guidelines on adult autistic spectrum disorders, found the screening tests and did them.

Every single one suggested the possibility that I might be on the autism spectrum. Suddenly the depression, anxiety, sensitivity to bright lights, sounds and crowds, my intense interests, my general weirdness all made sense. So I printed off the tests, gathered my school reports and presented my suspicions to my GP.

My GP listened and agreed that I am probably on the autistic spectrum, and agreed to refer me for a formal diagnosis. That was last August. It is now March of the following year, and I still haven’t even been able to get on a waiting list as the service is so over subscribed and under-funded in my area.

So now I’m in limbo, with a semi-diagnosis, a number of problems that affect my everyday life and well being, but with no certainty of even getting on the waiting list, let alone seeing an expert. I don’t have the resources to get a private diagnosis, so I will have to go via the NHS. Now I feel like I’m perpetually treading water – I’m keeping my head out of the water, so I’m not drowning, but I’m so tired.

On the importance of self care

These last few months have been tumultuous and probably the hardest of my life. I have tried to look at events differently (a legacy of CBT a decade ago). The thing I have come to conclude is this: we don’t give enough attention to self-care.

Loud noises, too many people and bright lights overwhelm me and make me very anxious, yet most of the social activities people my age are supposed to enjoy involve all three: clubbing, pubs, music festivals, even shopping malls stress me out. Before I got very ill I was a people pleaser to an extent, and would go out to try and fit in and maintain friendships with people my age despite not enjoying it. These kind of social situations would leave me exhausted and anxious. I’m much better at saying no now, and I’m very grateful my friends seem to understand this. I know not everyone has the same experience. I was talking to my sister today. She has many of the same anxiety/depression problems I do, but her friends really don’t understand when she needs to bow out.

I guess a related problem is this: I can either go to work all day, then come home and rest., or socialise. Not both. I. Just. Can’t. I know this now, so I can choose when to give my apologies.

I’ve been very open about my struggles with Mental Health problems to friends. I posted on Facebook about my problems and was amazed and saddened by the amount of my friends who said they understood, and more amazed by the amount of people who messaged me privately and told me they were struggling too. Depression and anxiety is so common, yet there is such a stigma around mental health problems to the point people won’t talk about it, and are reluctant to get help.

My mental breakdown came six weeks into a new job, and was public and messy. But I owned it and I’m not going to be apologetic or ashamed. One in four people at any given time is suffering from a mental health problem, yet some people treat MH problems as a moral failing rather than an organ that has a chemical imbalance. It seems you get sympathy for a broken leg, or diabetes or any other physical problem. The stigma is so damaging.

So back to self care: I’ve found not putting myself in situations that make me stressed to be helpful. I have found I have to say no to certain things people want or expect from me because I know it will be too much (it taken me a very long time to get to this point). I now recognise when I need to go to bed and close the curtains; I know when I need to book annual leave from work just so I can stay inside and not see anyone or anything. I know what activities I can do to displace my anxiety and depression – my saving grace has been my Japanese class – the teacher and other people in my class have no idea how much they’ve helped me.

I’m grateful  to the NHS services in the UK, even though Mental Health care in my area is woeful. I will do a longer post about MH and the NHS at a later date. My experience has not been wholly positive.

What’s in a name?

I’ve started this blog to chart my own journey to understanding myself after a nervous breakdown in August 2016.

I’ve always had anxiety and depression, as long as I can remember, but was formally diagnosed when I was 21, 11 years ago. So, I’ve been a Functioning Depressive for years, managing to complete two postgraduate degrees and live independently during this time.

I’ve had periods of being ok, but due to too many life events converging at once I went to The Bad Place, in which I was left with severe anxiety and depression to the point of being suicidal.

A lot of my anxiety comes from feeling like an alien species, particularly when it comes to relating to other women, but more about that later. Ever since I was a child I’ve felt weird and struggled to fit in, hence the name of this blog: Life on the Wrong Planet.