Hello, and welcome back to The Autistic Writer. Thank you for being here, I’m glad to have you aboard for this week’s discussion. I’ve got something pretty important I want to discuss – something that affects many autistic people, and potentially, at one level or another, all autistic people. The subject matter has come about through me noticing a powerful connection between two different social problems facing autistic people. To understand it, you have to be a little bit patient, and willing to understand the correlations. My thought process on this was originally triggered by the news that autistic celebrity and former model Christine McGuinness was splitting up from her celebrity husband, Paddy.
Now, I’m not going to go into any detail trying to dissect the possible reasons for the McGuinness’s split – the couple have asked for their privacy to be respected, and I intend to do that. But the announcement of the marital split is already in the public domain, so I’m not raising any eyebrows by mentioning it here. What is more open to discussion (after the 2021 documentary in which Christine McGuiness was seen being diagnosed as autistic by the Dark Lord of autism research, Simon Baron-Cohen) is that their split occurred just months after Christine’s autism diagnosis. Am I trying to say that autism caused their divorce? Well, no. Not exactly. But this marital split between two high-profile people so soon after one was diagnosed as autistic did give me pause for thought… and for some general investigation beyond those two celebrities. And very quickly, a can was opened and worms were all over the place. Let me explain…
As I have indicated, various strands of thought led to me writing this article, and one of those strands sprang from last week’s discussion of issues around diagnosis of autism. One thing that has emerged from interactions with many autistic people online is how often we are misdiagnosed with other conditions before being correctly diagnosed as autistic. Commonly, people are misdiagnosed with depression, anxiety, bipolar disorder, psychosis, schizophrenia, or other issues before the correct diagnosis of autism is eventually arrived at. To complicate things, sometimes, a diagnosis of, for example, depression, is accurate, but the diagnosing clinician fails to spot that unidentified autism is the driver of the depression. These misdiagnoses can cause terrible mental trauma for the person being diagnosed. I tweeted about my own misdiagnosis, and what resulted was an incredible Twitter thread in which many autistic people shared their own experiences of misdiagnosis, and the harm it causes:
The kind of harm caused to autistic people through these misdiagnoses should not be underestimated. On the one hand, it can result in people being treated with unnecessary medication, or subjected to unnecessary and potentially harmful therapies – including but not limited to ABA and electroconvulsive therapy. It can also result in people being unnecessarily and unjustly incarcerated in traumatising mental health facilities. It seems barely a month goes by in the UK without a news report of abuse or neglect in mental health facilities. As a society, we must not accept the abuse of people suffering from mental illnesses.
For an autistic person who has not yet been identified as autistic, who has been misdiagnosed with a mental health condition which has led to them being locked away, their human rights stripped away, and then being subjected to abuse of the most horrific kind, we can only imagine the trauma that results. But even without being locked away, just being misdiagnosed can lead to awful consequences for an autistic person. Imagine knowing at your very core that you are fundamentally different from almost everyone around you, that you are having to strive daily just to cope with a world that other people find normal, only to be told that you are depressed and anxious, and maybe some fluoxetine and six telephone conversations with a therapist should clear it up. It is equivalent to being gaslighted by the very people who should be directing your care and wellbeing.
After reading the responses on my Twitter thread, I began to understand the true scope of this problem. And that led me to wonder exactly how many autistic people are currently undiagnosed, unidentified, and struggling to come to terms with themselves, sinking under an unbearable weight of mental health problems that have sprung directly from not knowing they are autistic. It’s terrifying. We can be absolutely certain it is happening, because most if not all autistic people who have been diagnosed after childhood seem to have experienced some form of mental trauma due to not understanding their differences, and/or being abused by so-called friends, family, educators, co-workers, and health services. But what are the other effects of this situation on people?
We already know that autistic people, whether diagnosed or not yet identified, are more likely than the general population to be unemployed or in low-paid work, and more likely than the general population to take their own lives. Sadly, suicide is a leading cause of death among autistic people.
Various studies have been carried out into the social isolation faced by autistic adults. An interesting and thoughtful study was carried out by Hickey and Crabtree, and is summarised on the NAS website. I know from interactions with many autistic people that social isolation, and in particular the absence of romantic or sexual relationships, is a problem. Some of us hate being isolated, some of us choose isolation because we have been traumatised by the difficulties of previous relationships. Some of us, I suspect, claim to choose isolation because the truth that we feel unable to make the connections we desire is too painful to deal with. As an autistic person who has struggled to maintain all kinds of relationships, I began to wonder how many autistic people have found they have had relationships which have failed in correlation with their autism. Now, I know that saying, failed in correlation with their autism is a slippery phrase, which could mean many things, but I’ve chosen that phrase retrospectively, with reason. Bear with me.
I’ve spoken about how often autistic people are misdiagnosed with various mental health conditions, and how that misdiagnosis can, ironically, lead to trauma that causes mental illness. We also know from the double-empathy problem and other intricacies of autism that communication and relationships between autistic people and non-autistic people are fragile at best. But what about the effects of mental health conditions – the likes of which autistic people are commonly misdiagnosed with, or subjected to – on relationships? Do people suffering from mental illnesses find themselves on the wrong end of divorce, or being dumped, basically? It seems almost too obvious to suggest that when suffering from a mental illness, one’s ability to fully engage with and maintain an intimate relationship is likely to be compromised, and various studies have confirmed that mental illness in one or both partners is a major cause of divorce. An example of such a study can be found by clicking here. But here is an interesting thing: Not every marriage – or any other kind of relationship – falls apart under the burden of mental illness. I personally know people whose relationships have broken due to the pressures of mental illness, but I also know people whose relationships have survived it. Make no mistake; mental illness is hard to deal with, both for the person suffering it, and those close to them. And mental illness will sometimes create enough pressure to destroy a relationship. But not always. So, why do some relationships get past the pressures of mental illness in one or both partners, and go on to survive?
I’m not an expert on mental health, and most of my personal experience and observed experience is of depression, anxiety, and addiction. While these three types of illness can be lifelong problems for many sufferers, there is a widely accepted view that they can be transient illnesses, with an end in sight, if they are managed correctly. Depending on the exact type of illness and the personal needs of the individual, these conditions can be overcome with therapy, medication, emotional support, lifestyle changes, and sometimes (particularly with transient depression), just time. Relationships can and do survive all kinds of challenges; illness, bankruptcy, unemployment, and so on. Often, people are able to see the so-called light at the end of the tunnel. Their commitment to each other in a relationship, combined with a knowledge or hope that the bad times will end and things will get better, enables people to come out of the other side of great difficulty, on go on to thrive. Simply the knowledge that the bad times will not go on forever is enough to help people stay together. But what if people in a relationship are holding on to that hope, and continuing to hold the relationship together, but then something happens to make them think that the bad times might be permanent? What then?
When I tweeted the above, I guess it was partly inspired by what I’d heard about Paddy and Christine McGuinness, but I’d also seen some tweets from autistic people about their relationship troubles. In fact, I’d seen a lot of that stuff on social media over an extended period of time, but I hadn’t really understood the scope of it. My tweet became another fascinating and heartbreaking thread. It seems that all too often, when someone discovers in adulthood that they are autistic, a relationship breakdown follows. Why? I suspect the reasons are not always straightforward, but there are certain things we can be confident of…
We already know that our culture is a receptacle for many harmful myths about autism. This blog site has gradually evolved to include a strong element of mythbusting about autism, but I don’t fool myself – it will take much more than the combined efforts of myself and the many other autistic people communicating about these issues to change things any time soon. Myths about autism include (but are not limited to): Autistic people have no empathy, we cannot feel love, we are violent, and we are dangerous. There are many more myths, but these, I feel, are particularly relevant when it comes to relationship issues. How can these myths affect a relationship?
Imagine that you are a non-autistic person in a marriage or other close relationship. Your partner becomes unwell, and is clearly struggling to cope with life. The diagnosis is of a mental illness. You love your partner, you are committed, and you are determined to support them through this difficult phase of life until the good times return. But it’s hard. The relationship becomes difficult over a prolonged period of time. The various treatments and therapies offered your partner simply do not have the desired effect. Things get worse. You are exhausted by the situation. Then, a sharp mental health professional suggests why the various treatments are not helping: your partner is probably autistic. They are referred for an assessment. Previous to this, you both knew almost nothing about autism. Your google research exposes you to all the harmful myths about autism, many of which emanate from supposedly reputable sources. Your concern deepens. Could it be true your partner doesn’t really experience love and empathy? Could they be dangerous, violent, even? The assessment is completed, and your partner is formally diagnosed as autistic. One thing you have discovered is that autism is lifelong. Your partner was born autistic, and will always be autistic. Among the myths, you find some nuggets of fact, like there is no cure for autism. There will be, it seems, no end to the bad times. This is not what you signed on for. There is no light at the end of the tunnel, no return to what you thought your partner was when you first got together. In fact, this autistic masking thing you’ve heard of… doesn’t that just mean they were pretending to be someone they weren’t? They just fooled you, right? Do you really want to commit the rest of your life to this relationship?
The above is, I suspect, the most common reason why autism diagnoses lead to the break up of relationships. For the non-autistic partner, a particular psychological phenomenon is likely to come Into play; a kind of cognitive bias, confirmation bias, which affects all people, means they will start to interpret all their autistic partner’s behaviour as indicative of the problematic, supposedly autistic issues they are expecting to see. If the autistic person is mentally exhausted and thus distant, the partner might interpret this as proof they do not really feel love, for example. Meanwhile, for the newly diagnosed autistic person trying to come to terms with what they have learned about themselves, and processing all the historical trauma that led to the autistic burnout that triggered depression that led to a diagnosis, the effects can be catastrophic. As I said earlier, suicide is a leading cause of death among autistic people. Autistic people are much more likely than the general population to be isolated and lonely.
I often talk about how the myths around autism are harmful. The ways in which they are harmful are many and highly varied. The above discussion just touches on one aspect. The ironic truth is that autistic people do experience empathy and love. Many of us are hyper-empathic, and very emotionally responsive. We also tend more toward honesty and reliability. If someone in a relationship with us tells us they love us, and that they are here for the long haul, then barring other influences we are likely to accept that at face value, and we will continue to work at the relationship with all we have, through good times and bad. This makes it all the more devastating when a partner decides they’ve had enough soon after our autism diagnosis arrives.
When someone is identified or diagnosed as autistic in adulthood, it can be a simultaneously liberating and traumatising experience. The joy of finding out who and what you really are, and why you have experienced the difficulties in your life, is amazing. But it’s also common for someone in this situation to think back over the traumatic experiences in their life, and put them into the context of being an undiagnosed autistic person. This can be a heartbreaking process. It means a newly diagnosed autistic person can fall into depression – or a deeper depression than before – while trying to come to terms with it all. However, it does seem that for most of us, this particular depressive phase is temporary – partly because it is counteracted by the relief of the diagnosis and the new understanding. Many autistic adults are delighted by their diagnosis, and after a coming-to-terms period go on to thrive. But many others do not, and the breakdown of relationships and the dispersal of the support network they previously enjoyed is too much to bear.
The purpose of this article was not to provide answers or solutions. It seems trite and over-simplistic to say the answer is true autism acceptance… because achieving true social acceptance for autistic people is anything but simple. I just wanted to shine a little light on this issue. It does, however, leave me with one lingering question…
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That’s all for this week. Until next time, take care.
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Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.