Dear Karen

I’m angry. I’m having a hard time concentrating because I’m angry. This is going to be a long rant and it’s mostly for my own benefit, because I hope if I can say everything in my head, I’ll be able to concentrate on finishing my dissertation.

 

As you might know, student nurses are being invited to opt-in to a paid placement to help the NHS through this pandemic. We were sent out the opt-in form at the end of March and told we had until the 6th of April to submit it. I completed it the day we were sent it out, it was a Google form, I’ve got the confirmation email. So far so good. Uni’s job was to upload the forms so that Health Education England could pass on the names of students to the Trusts they had asked to work for. Two weeks, no contact. As a cohort of mental health nursing students, we talk to each other, nobody had heard anything. Okay fine. Fast forward to 14th April, at about 8:30pm, I get an email from a lecturer at Uni, who for confidentiality purposes, we’ll call Karen. The email from Karen was to organise a Google Hangout to discuss me having left my last placement (which I would have been moved from anyway when the opt-in placements started) – the circumstances for which I will describe below and to discuss my ‘understanding’ of the opt-in placement. Reluctantly, I agreed to this meeting. 15th April, most people in my cohort start getting emailed by the local Mental Health Trust asking them if they have got jobs lined up for when they qualify and if they don’t asking them where they would like to be placed for the opt-in placement. I hear nothing. 3pm roles round and I meet Karen and my link lecturer who, for my own amusement we’ll call Little Karen, on Google Hangouts.

 

It starts off with me being asked what happened when I left my last placement a week ago. Bearing in mind I had already sent quite a detailed explanation of what had happened to Little Karen.

 

Before I start a work Placement for my nursing course, I let my mentor know I’m autistic. I explain my reasonable adjustments and my mentor agrees to meet them. One of my adjustments is that if I feel overwhelmed, I need to leave to have some space and be left alone. This is because I can’t talk coherently when I’m on the edge of a meltdown.

 

Last week, I felt overwhelmed and needed to leave. I had only just arrived and hadn’t even seen my mentor. A senior nurse saw me, and I said I needed to leave. Instead of allowing this to happen, I was prevented from leaving and my mentor tried to force me into a conversation. I was beginning to meltdown at that point and I can’t even remember what was said.

 

According to Uni my mentor felt I behaved unprofessionally. I explained that this is why I asked to be able to leave the situation. Uni’s response was that as a nurse, my mentor’s instinct was to make me stay because I seemed upset and that I had to understand that her ‘nurses’ instinct’ overrode her memory of my reasonable adjustments. Well my autistic response to being overwhelmed overrode my ability to be professional because I wasn’t allowed to use my agreed coping strategy.

 

According to Karen, my mentor had also told her that I had ‘put my needs above the patients’. I don’t really understand how that can be true, given that I had no interaction with patients in the day and a bit I was on the ward. The one shift I did do, I spent five (5) hours sitting in the tiny staff room reading through ward policies. One of the things I asked for was to spend the first couple of shifts with my mentor so I could get to know my way around the ward and learn how the ward worked. 5 hours in a crowded room, reading policies for a ward I wasn’t going to be on for very long didn’t seem like a particularly productive use of time. Little Karen seemed quite surprised to learn that this had happened.

 

Karen asked me if I was ‘working on my coping strategies for these situations’ I said that being able to leave when I felt overwhelmed was the coping strategy I had, which was why it was my agreed reasonable adjustment. Instead of accepting this, Karen carried on with the ‘how are you going to cope when you’re qualified, there will be situations you can’t walk away from’. I could not help showing some frustration at this point, given how many times I have had to answer this question over the last few years and how incapable neurotypical people are of understanding what I’m trying to explain. But that should be besides the point, because in this instance, patient safety wasn’t an issue. Me leaving when I needed to had been agreed. I had even been told I didn’t need to tell anyone, because I was supernumerary. I had in fact been told that if I needed to leave and something was going on with a patient, all I had to do was tell someone, so they could take over. So, in this instance, which is what we were purportedly discussing, I had done exactly what the agreed plan said I was to do. Yet somehow, according to Karen, I was still in the wrong.

 

There was no point arguing that point with Karen, because she wouldn’t get it. So instead, I tried to explain that had there been a need for me to stay calm, say in a situation where a patient was having a meltdown, that would have overrode my need to get away until the situation was dealt with. Isn’t adrenaline and amazing thing? Predictably, like most neurotypicals, Karen was incapable of understanding this nuance. Of course, if I can do something sometimes, I should be able to do it always. I suggested that maybe it was just unreasonable to expect a busy acute mental health ward to be able to make my adjustments given everything that’s currently going on. I didn’t say that I had tried to check this point with the ward when the state of emergency was declared. I didn’t say that it would have been nice if the ward could have just been honest about it. Karen agreed and seemed pleased that I was being understanding of how difficult it is for neurotypicals to support me.

 

Then we moved on to ‘do you think it’s reasonable to expect anywhere to be able to support you at the moment?’ here was the crux of why we were having this meeting then. Here was Karen saying that, instead of opting-in, had I considered deferring. I have told the university, in writing, at least five times this year that I don’t want to defer, take time out, go part time or in anyway delay my graduation. I chose to opt-in. I had the same information when making that decision as everyone else did. I chose to opt-in. We have been told, repeatedly, that if we opt-in we can opt-out at any time. With this knowledge, I opted-in, because if the Trust, the people in charge of allocating this placement, not Karen, put me somewhere that was going to be too difficult for me, I would opt out and reconsider deferring. I explained this to Karen. I explained that if I could have a community placement – which is possible, some of my friends had already been allocated community placements – I would be fine. I don’t like wards. I have no intention of ever working on a ward. I have a job in the community. Which I hope I’ll be quite good at. Karen agreed that I could do this. Little Karen suggested I contact the woman at the Trust in charge of sorting out opt-in placements. Karen told me not to do this. Quite quickly after that the meeting ended.

 

A day later, everyone in my cohort who opted-in had had contact from the trust and were beginning to get contracts sent out and being invited to an induction on Monday. I had no contact. None. So, I emailed the woman from the trust, on advice from my friends who had been in touch with her themselves.

 

No response. So I email again, because by now it’s Friday 17th and if I don’t get things sorted out, I’m not going to be invited to this induction, which means I won’t be able to start placement at the same time as everyone else. On my friend’s advice, I contacted the person who was sending out contract and ‘job information’ forms. She said my name wasn’t even on her list and to contact Uni, because maybe they hadn’t uploaded my form yet.

 

Some hours later, I got an incredibly pissy response from Karen saying that my had recently been uploaded and maybe the trust just hadn’t checked yet. She then went onto express her ‘disappointment’ at me having ‘complicated matters’ by emailing the woman at the trust in direct contradiction to what she had told me to do. Somehow, I managed to write a polite response and predictably, I have heard nothing since. I have had nothing from the trust. I have not been invited the induction day. I am, essentially, being completely fucked over. So, here is the email I would have liked to write:

 

Dear Karen,

 

I assume by ‘complicated matters’, you mean having drawn attention to your utter incompetence? My cohort are all in touch with each other, the university typically takes this for granted because it’s not unusual for some of us to be missed off university mailing lists. So, I know that everyone else who has opted in has been invited to a trust induction on Monday, meanwhile I have had no contact whatsoever. Given that, due to your incompetence, I have several hundred placement hours to make up, I’m sure you can understand that I am keen to start placement as soon as possible. The information I sent to the trust, was the information other people had been asked to give, I was trying to help the process along. I assume your issue is that the trust then asked you why I was contacting them, given that my name wasn’t on their list. I guess that it’s at that point you hurriedly uploaded my form. Which should have been uploaded a week ago. Rather than apologise you have chosen to blame me for your mistakes.

 

You’re disappointed that I acted against your advice. Let’s discuss that, shall we Karen? The university chose to send me the opt-in form. There are quite clear guidelines on who should be allowed to opt-in, I meet those guidelines. I am an adult. As a nurse yourself, you’ll be familiar with the Mental Capacity Act (2005), which states that even when a person has a disability, you should presume capacity, even if you think a decision is unwise. I chose to opt-in. I had the same information available to me as everyone else. I have the capacity to make that decision. You chose to ignore my choice and try to push me into deferring. I had stated my intention to opt-in to various members of university staff (besides filling in the form), so you had plenty of time to talk to me about that decision, if you really felt the need to. You chose to wait until the last minute, when everyone else was being contacted by the trust. You have deliberately held me back and prevented from me being able to start at the same time as my peers.

 

I’m going to give you the benefit of the doubt and assume you think that you’re helping, with your paternalistic, patronising attitude towards me. You’re not. You might think that you’re bending over backwards for me, but has it occurred to you that bending over backwards isn’t helping me in the slightest when what I actually need you to do is listen to me? I have offered the university so many suggestions and work arounds over the past year to try to make this degree work for me. You have tied yourselves in knots telling me that my suggestions are impossible, when all you’ve actually done is stuck to your original plan and refused to budge. You have consistently presumed that you know what’s best for me while actively ignoring what I have to say. I’m 26 years old Karen. I have my whole life’s worth of experience of being autistic. I know what I can and can’t do much better than you ever will. I didn’t need you to attempt contortion for me, I just needed you to listen and respect what I say. Frankly, I am disappointed by the discrimination I have experienced from a university that prides itself on its student support.

I hope that you will learn from this experience and be more considerate of the next autistic person that crosses your path.

 

Kind regards,

Me.

 

What do you know? I feel slightly calmer.

Why do YOU want to be a nurse?

Why do you want to be a nurse?

I’m willing to bet that all nursing students, no matter which branch they’re in are asked this question more times than they can count. The NHS is in crisis. Social care is in crisis. Everywhere is understaffed. You could earn a lot more in a less stressful job. In mental health the need massively outstrips demand. There’s no funding. You’ll never do a good enough job.

Why would anyone want to be a nurse in the UK right now?

 

That is not the question I get asked. It’s not the question I get asked because I am autistic. I am autistic and I tell everyone that I am autistic because if I don’t tell people then they can’t reasonably be expected to know that I have a disability. If they can’t reasonably be expected to know that I have a disability, then they don’t have to make adjustments for that. If they don’t make adjustments for that and I have a sensory overload or a meltdown because nothing was put in place, then it’s my fault. So, I tell people, because autism is as much a part of me as my eye colour, only people can’t see it. When I tell people I’m autistic, the question becomes this:

Why do you want to be a nurse?

Suddenly it’s not about the state of the NHS or understaffing or underfunding or pay or working conditions. Suddenly it’s personal. Nursing is about communication and teamwork and interpersonal skills and every day is different. The things required to be a good nurse are anathema to everything most people know about autism. How do you, autistic person, think you are going to cope?

 

There is a video by Tony Attwood that I really love, I’ll link it below. It’s a video I wish that I had seen three years ago when I first started my degree or when I was 18 and wondering if working in a lab really was what I wanted to do. It’s the video I wish I could send to everyone who has ever asked me why do I want to be a nurse. I love the video because it explains something I have known for a long time but struggled to articulate. I am autistic, but I am also a woman. I am an autistic woman who, more or less and with a lot of help, survived mainstream school. I’ve lost count of the number of times people have told me that I don’t ‘look autistic’. I learned to mask. I learned to mask by watching and reflecting and cataloguing turns of phrase and facial expressions and social rules. I learned in order to imitate and although my imitation still isn’t and probably never will be perfect, I have learned to read people. I have learned what body language can mean, depending on the context, depending on the words accompanying it. I have learned to judge when I’ve said completely the wrong thing. I have learned how my own emotions work and how they link to what’s going on around me in ways that aren’t always immediately obvious to me. I became a psychologist because I am an autistic woman in a society that doesn’t make space for us to simply be as we are.

So why do I want to be a nurse?

I want to be a nurse because I have spent my whole life learning to understand people and what is the point of that if I don’t use it to help others? I want to be a nurse because I’ve been a patient and I want to break down those barriers. I want to be a nurse, because who is more qualified to work with and advocate for autistic children than autistic adults? There are some things you can’t learn from reading about. I want to be a nurse because I want autistic children to know they don’t have to accept closed doors. I want to be a nurse, because I love finding that one thing that sparks a moment of connection with another person. I want to be a nurse because what’s the point of looking at the world from a different point of view if you don’t put that to good use? I want to be a nurse because working with children is something I’m surprisingly good at. I want to be a nurse because everyone needs someone who will listen to them and be there for them and fight their corner. I want to be a nurse because I’m better at 1:1 than I am to groups, so I’d be an awful teacher. I want to be a nurse because I am autistic and I’ve found my special interest and for me, that is enough.

 

https://www.youtube.com/watch?v=-n6IWTRVGeg

Letter from 25-year-old Robin

Possibly I will try to write more this year than last year’s two posts. Possibly. 

Dear 26-year-old Robin,
It’s funny how much I still psych myself up to write these letters. In the beginning there was so much uncertainty over whether I’d be there to read them in a years time. In a sense, that uncertainty is still there, because none of us can know when one day will be our last day or what will happen a few minutes down the line. But that heavy grey cloud no longer hangs over my head. There is no longer that sense that if I am not here reading this next year it will be because I have taken my own life. There are still struggles and there are still doubts, but I am more Luna now than I have been since I was a child. My baseline is brighter. Instead of a constant grey fog, my mental skies are clear. Sometimes a pale wintery blue, sometimes a deep, warm summer blue. Sometimes there are storms, but they blow over, they’re weather and not the sky itself. It’s hard to put my finger on exactly what has changed, it’s more that I feel less empty, I feel like I can greet myself as a friend.

Maybe reading letters from my past selves is trepidatious because they list hopes I have since dashed. I couldn’t cope with the long shifts on Ambulatory assessment. Nor could I cope with the heat of Day Case Unit through the summer heatwave. I failed a placement and at the time it was heartbreaking and a part of me is still angry about the way it happened. But it made me make the decision I had been toying with all year: to transfer to mental health or not. I transferred. I still have nearly six months left of Second Year because of it. I’m no longer in the cohort with my friends. It doesn’t matter. It was completely the right decision, so in a way I am grateful that those events transpired. I have forgiven myself for what feels like giving in, because I am on the right path.

My first mental health placement was CAMHS. I have found what I need to be doing. I have found what I am good at. To say I enjoyed it would be the understatement of the century. I wanted to get up and go in. I looked forward to work the next day. I felt so appreciated. There were moments when I was genuinely asked for my opinion on patients by other clinicians including the psychiatrists. Suddenly being autistic was an advantage, because it meant I got it. It meant that all these years of struggling with mental health, of researching and learning obsessively could be put to use. I did over 100 extra placement hours. I missed it when I left. I hope you still have that drive. Being back at uni is hard. I am still so nervous about my next placement and placement 5 because I know deep down that I don’t want to be on a ward and I will struggle with it. But I am determined, because I know where I want to end up.

Over the last year, that subtle change has spread. I stopped tracking meals because when I track I know I start to obsess. Over the summer there were moments when I caught my reflection and realised not only do I look like myself, I like the way I look. At the beginning of the year I started doing RED January. When I signed up, there was a part of me that was thinking about getting abs. Getting fit. Getting my body lean and perfect. When I started doing yoga in the morning, I realised I was wanting to do it for longer not for my abs, but because I loved it. I could relax into poses because my mind was calmer. After January, I hit a stumbling block with the usual Pre and post menstrual stress. I am trying to get back into it, because it helped. On the subject of exercise, I got my brown belt at Jado and it was one of the biggest achievements of my life. I have since taken a break because I struggled with getting to Advanced class, I struggled with the change and I struggled because my one track Aspie brain had focused on nursing and not ninja class. I do intend to get back to it, because I do want my black belt and for so many years I have held onto Jado as something that I haven’t quit before the finish line. Talking of reaching the finish line, on the 24th of August last year, just after I turned 25, I passed my driving test on my first genuine attempt. I still don’t enjoy driving, but I feel more confident now. I know that I can drive and I know that nobody is perfect.
In some ways I have been more creative over the last year with altering clothes and making puppets, but I have written less. It isn’t so much that I lack the muse, it’s that I lack the motivation to sit down and write. My mind has been so wrapped up in other things. Even in my endless daydreams I am a nurse now.
Socially I am much more relaxed, and my relationships are stronger. Narnie is not my only port of call. Twice last year I had the pleasure of seeing Willow, I hope there will be more occasions in the year to come. There are still times when I feel like I’m sitting under a harsh spotlight watching myself from the outside over analysing what to say and how to say it. Those times are becoming rarer and I am becoming better equipped at navigating them. I have learned to take myself as I am.
Hopes for the year:
I hope you’ll have stuck out mental health nursing
I hope you’ll be doing placement 6 with CAMHS (and maybe even have a job lined up!)
I hope you’ll be back at Jado
I hope you’ll be doing yoga everyday
I hope you’ll have written a short story or maybe more
I hope you’ll have completed the DBT course
I hope you’ll have done some ACT training
I hope you’ll be writing a sentence a day
I hope you’ll have moved to Appletree
I hope you’ll have stopped picking your skin

I look at how far we’ve come and I am so proud. I do things in my own time at my own pace, as Luna would. I hope I will only continue to live, learn and experience the ocean of life.

I love you,
Robin

Brain Glitch

Is it any wonder that only 32% of autistic adults are in paid work compared with 80% of the non-disabled population and 47% of the disabled population? There are obvious barriers, like the fact that social communication is an essential skill regardless of your job role. People who can’t play office politics are automatically on the backfoot.

 

Then there are more simple things. Like the lack of understanding. Or even more than lack of understanding, the refusal to listen. The dismissive attitude. The problem with “everyone is on the spectrum somewhere” is that it justifies this ignorance. One of the best analogies I have heard is that autism is a different operating system. Autistic people are Apple Macs, neurotypical or non-autistic people are PCs. Most of what you can do on a PC, you can do on an Apple Mac, but sometimes the way you go about it is different. You often need to download operating specific versions of programs or apps; a PC version won’t work on an Apple Mac and vice versa. There are some things that PCs are better for than Apple Macs and some things that Apple Macs are better for than PCs. If you’re used to a PC, you might find an Apple Mac hard to navigate. Expecting an autistic person to process things the same way as a neurotypical person is like expecting a PC program to work perfectly on an Apple Mac. It’s not going to happen.

 

Let’s extend the analogy and imagine that all the processes that go into day to day life are programs on your operating system. Some are functional programs like ‘sociability’ and some are stressor programs. For example: I am a student nurse. I have been on placement on a ward with no central air conditioning, the ancient ineffectual unit and many fans do little more than blow hot air around. The ward is incredibly hot, sticky and close. Imagine that ‘it’s hot’ is a simulation everyone is running. For most people (PCs), ‘it’s hot’ is processed into feeling uncomfortable and more irritable, but it doesn’t have a huge effect on their processing power and they can run their other programs as normal. For me ‘it’s hot’ is processed into feeling claustrophobic, dizzy and uses so much processing power that my other programs start to glitch. I recognise when I am glitching and there are a few tools I can use: I can take rescue remedy, I can drink water, I can take myself away for a few minutes and breathe, I can take some pressure off by reducing some of the other programs I am running and if it gets too much I can remove myself from the situation.

 

The problem is that PCs attitude is we are all experiencing ‘it’s hot’ and everyone else has to deal with it, therefore I should too. Even though my experience of ‘it’s hot’ is different to their experience of ‘it’s hot’. This is what I was told when I requested to leave because I felt that ‘it’s hot’ was affecting my processing powers to the point that my other programs were glitching too badly to function. As a result, I pushed myself to lower the power on some of the glitchy programs, I was less sociable, and I volunteered for less in order to continue to function while ‘it’s hot’ was running. This was manageable until other power draining programs came online too. At this point, I was in a difficult position, because I knew I was glitching, but I also knew that if I asked to leave, that would be considered unprofessional. I took breaks. I shut myself in the toilet and sent out SOS messages to friends to try to pull myself through. I ultimately decided I still needed to leave because the glitching wasn’t improving despite my best efforts. As I was going to have that conversation, I was asked to do something. I foolishly thought I could hold of any major glitches until after I had completed the task, having already been pulled up on not doing things when I was asked to. If I had been allowed to carry out the task without interruption, I might have. Unfortunately, I was interrupted by a PC correcting me on a petty thing, which triggered a major glitch.

 

A glitch is a reasonable analogy for a meltdown. When a computer has a glitch, it freezes or shows a blank screen or flashes lines of colour. When I have a meltdown, my rational self freezes and no amount of clicking is going to bring it back until it’s had a chance to switch itself off and back on again. When I have a meltdown, I am not in control. In this particular incidence, I said I was going home and proceeded to leave. My patient was safe, the PC nurse was with her. I didn’t swear, but I do appreciate it was unprofessional. Hence why, if it had been acceptable, I would have left earlier or not gone in at all.

 

What has now happened is I have probably failed placement and I will probably be suspended from my course. Because all people see is the major glitch and the major glitch counteracts every good quality I have because it is dramatic. Nobody wants a perfectly useful Apple Mac that will suddenly show the blue screen of death without warning. My mind has the processing power that its got. There are some environmental influences that can take the pressure off and free up more space, like an external hard drive for an Apple Mac, but ultimately once the limit has been reached, my mind will glitch.

 

Glitching is not going to go away, as much as I wish it would. Therefore, it becomes a matter of working with the processing space I have to avoid glitches. It’s worth keeping a perfectly useful Apple Mac which you know glitches when it has 6 applications open at once, because you know you can run fewer than 6 applications and avoid glitching. I would make a perfectly good nurse and with the right adjustments, I won’t glitch. I don’t expect neurotypical people to know what is an isn’t going to make my mind glitch. What I would like is to be listened to and respected when I tell them. At the moment all I get whenever I ask for an adjustment to be made or to leave early because I can feel myself about to glitch is ‘how will you cope when you qualify?’. Then when my mind glitches: ‘your mind glitches and that is unacceptable. You must stop your mind from glitching.’ But equally ‘everyone else is running all these programs without their minds glitching, I realise your operating system is different, but we are all different makes of laptop (even though we use the same operating system) and everyone else manages so you should too.’

 

As a student, I have no control over where my placements are. When I am qualified, I will choose a job in which the environment maximises my storage space. The more storage space I have, the greater capacity I will have for dealing with stressor programs. However, as a student, the environment is entirely outside of my control, so I have much less control over outside influences on my storage space. That means even if I do as many things as I can to maximise my storage space, it is still going to be more limited by the environment that I am in. Therefore, adjustments are more necessary to prevent mind glitches than they will be when I am qualified.

 

I don’t expect neurotypical people to understand how my mind works. I expect them to accept that I do understand how it works and to respect my needs without judgement.

Dear Anxiety

 

I wasn’t sure about putting this up. It’s not a wander through the snow globe. It’s something I wrote while the glass was frosted up and I was ready to turn my back to it hide. I was tired and running away from scary things has always been my preferred method.

Dear Anxiety,

How many things do you get to take before I say no? How much of me do you get to erase, to steal, to break, before I stand up to you?

You are not stronger than I am. You do not get to silence every positive thought and every aspiration I have. You don’t get to drown me out, because I will learn to master every one of the tricks you through at me. I will find new ways of balancing. I will find a way around you. I will not drown. I will not sink and wait for someone to pull me out. I am stronger than I was. I am stronger than you will ever be. Eventually you will run out of curveballs to throw. But I won’t. I have more imagination than you do. I will not let you take any more from me. I will learn to regroup quicker. I will learn to strategize more thoroughly.

I am more than you. I am not just a body for you to inhabit. I am not your puppet. I will get up, every time you knock me down. You don’t get to flatten my thoughts, put my dreams into greyscale or silence my emotions. I don’t have to lie back and listen to your narrative of what makes life easy.

I won’t let you take any more. These thoughts are mine. This life is mine. You don’t make the rules. I do. I do and I am telling you no. I’m telling you I won’t give up. I will find a way around this. I won’t give up this placement. I will find a way to make the next placement easier. I will pass my driving test. I will get my brown belt. I will write a novel. I will stand up for myself. I will make puppets with Pearl. I will finish this degree. I will be a nurse. I will travel the world. I will live independently. You can’t stop me. I won’t let you.

Robin

Egg Donation

Today I discovered I am not allowed to be an egg donor.

I was considering it because I thought why not? I’m young, healthy and, as far as I know, fertile. I don’t need all my eggs and the thought of someone sharing 50% of my DNA coming to find me in 18 years’ time doesn’t bother me. So why not? It could help someone who was desperate for a child of their own and I am not naïve enough to think that everyone who wants a child and can’t have their own should just adopt, because it’s not that simple. I contacted Oxford fertility by email to find out if it was a possibility. I mentioned that I hadn’t had children, there’s a tiny risk of infertility following egg donation, so I wasn’t sure if that would count me out. I mentioned having Asperger syndrome.

It wasn’t the lack of children/potential infertility issue that ruled me out.

They cannot accept me as an egg donor because “there is a potential genetic link with Asperger syndrome.” Correct. Although the strength of heritability is questionable. Twin study concordance rates are all over the place. Sibling concordance rates are relatively tiny. Most autistic people have NT parents.

The lack of strong evidence that my eggs will produce autistic offspring isn’t the thing that bothers me most. What bothers me is that this is an issue. I am not against genetic screening. If I was the carrier of a disease which meant my potential offspring would have foreshortened, painful lives, I could completely understand the logic of being rejected for egg donation. But there is this double standard with autism. On the one hand, I am told it’s a difference, not a disability, that it should be ASC for ‘autism spectrum condition’ instead of ASD for ‘autism spectrum disorder’ because, I am told, I am not ‘disordered’. It’s funny, that the same institution, the NHS, which has told me this, is now telling me they can’t accept my eggs because my DNA might give my offspring a slightly higher chance of having this ‘difference’.

Which is it? A difference that should be celebrated, or a disorder so terrible that the risk of passing it on rules out an otherwise healthy person from egg donation?