Understands What?

“Until everyone understands” proclaimed the slogan on the front of the conference pack for the National Autistic Society’s one-day conference on Autism and Mental Health.

I sat, during the afternoon tea break of this conference, which I’ve already described in some detail in My Conference Day and Content Report, and pondered exactly who “everyone” was, and, perhaps more crucially, exactly WHAT everyone would, ideally, understand about autism and autistic people. My experience, at a conference supposedly designed specifically to promote understanding about autism and autistic people had indicated that understanding was still distinctly lacking!

First off, there were the practical arrangements at the conference itself as far as autistic people attending were concerned. The worries caused by the initial e-mail about the parking were just the start of a really stressful and difficult conference that seemed to have almost ignored the access needs of the very people it was supposedly advocating for. Being forced to sit in really close proximity to strangers who were wearing non sensory-friendly clothing was absolutely horrible for me, and my request for an end seat was given hardly a thought. Furthermore, no allowance was made for those of us who struggle to sit “normally” on chairs and cope by rocking or pressure stimming with our legs folded under us. There was also no area available for those of us who might happily have spent the day sitting on the floor. Another autistic blogger who was at the conference and blogged about it afterwards observed that some delegates were strongly perfumed – although my own sensory sensitivity to perfume is relatively low, some autistic people find strong scents absolutely unbearable.

I had already compensated for lighting and sound issues by wearing sunglasses and earplugs (the onus was entirely on me to take care of myself this way) and the impossibility of even knowing where the quiet room was without any sort of map or plan in the conference pack meant that I never even located it. Someone online said there was a sign in the foyer, but getting into the foyer any time after the start of the conference was, for me, impossible, owing to the sheer number of people crammed into such a small space. Similarly, the instructions for splitting into streams were only given in spoken instructions, which I struggle to keep in my head – I never did work out where Stream B took place, and had I been hoping to attend that stream would have been really grateful for a map showing where that session was located.

And, of course, it was the issue with the foyer that prevented me from accessing food, drink, or toilet for the whole day. In order to have accessed any of these I’d have needed a carer, but there was no provision for one to attend with me unless they also paid the conference fee. As an autistic adult (and, indeed as a person on low income) I was entitled to a “reduced” fee for the day (including, presumably, the cost of the food and drink I was unable to access), but it was still sufficiently high compared to my income that I thought long and hard before signing away what was, for me, a large amount of money (you can maybe gather by now that I really am keen to learn and to get information, as I spent a very large slice of my monthly income to spend a day in quite significant discomfort and you might well ask why I would do such a thing – I hope I’ll answer that question later). Furthermore, the displays of books that I would have liked to have browsed were also in the foyer and therefore inaccessible – it’s little wonder that I do most of my book shopping on Amazon these days!

I was, to an extent, prepared for many of the difficulties I encountered throughout the day. Although I have not been to large conferences for a long time (I believe I last wrote a conference report around 20 years ago), I know that the logistics of organizing a large conference are not straightforward (and even less so when the space booked for the conference was quite so tight as it turned out to be). I also knew that I was, to an extent, entering a world that would be alien for me. It was obvious that the registration form had not been designed with autistic people in mind – not only was the pricing structure unclear as far as autistic adults were concerned, but the drop-down box forced me to use “person first language” and describe myself as a “person with autism”. I have been part of the autistic community for considerably less than a year and in that time it has become abundantly clear that, like me, the majority of autistic people prefer to refer to themselves as “autistic” and not “with autism” (which somehow implies that autism is an add-on). I’ve heard “professionals” say that “person with autism” emphasizes that autistic people are people and is therefore, somehow “better”. To be brutally honest, if someone needs reminding that we autistics are people, then the problem lies with them!

However, there was a really bright moment in the day when Lorraine MacAlister was discussing the support programme Teen Life at the end of the lunch break. MacAlister explicitly stated that the language of the programme would refer to participants as autistic teens, having taken advice from autistic people themselves! That was the moment that made me say YES! to myself. Somebody in the NAS is listening. Somebody IS understanding and believing autistic people. This is progress! Yay!!!

It was also obvious from the list of delegates attached to the final conference instructions e-mail that as a mentally ill autistic adult I would be in the minority (at a conference about autism and mental health, yes, I know – the irony is not lost on me) and that most of the delegates had described themselves as teachers, carers, parents, and so on. I’d be interested to know how many autistic people attended (I knew there were several through my contacts on facebook, and I subsequently discovered on twitter that there others who’d been there), although I do absolutely recognize that educating those who are not autistic is a really important part of the NAS’s work – it’s just a shame this education cannot extend to showing non-autistic delegates how an autistic-friendly event could be run, and didn’t include education on, for example, not wearing strong perfumes!

And so we come to the speakers. Like with the logistics I was prepared to encounter tough material (if I’d been expecting fairy stories then I was in the wrong place), and I’d read and absorbed enough information about the keynote speaker to expect that there might be some challenging aspects to his presentation. However, I was here this time to see (and hear) for myself rather than to read the reports of others and I started out with as open a mind as I could.

From the outset it was obvious that Tony Attwood is supremely skilled in the art of rhetoric and is a slick and practised speaker. However, it also became obvious very early on that he was not addressing the entire audience. I very quickly realized that in this context I was a “they”, and there was no concession given to the fact that there were autistic delegates present. While the majority of the audience laughed at Attwood’s “jokes” (about robots, Oxford and Cambridge, the Antiques Roadshow, and whether or not autistic people were still virgins in their mid-20s), I started to become somewhat irritated by this “humour”, most of which seemed to be carefully calculated to get the non-autistic members of the audience on side. I also wondered, though, how funny the parents present would find the jokes about virginity when their own children reached their mid-20s and were struggling with relationships? The fact that autistic children grow up into autistic adults (rather quickly) seems to be perpetually forgotten or ignored by so many people who focus on children.

As someone who was a classroom teacher for 5 years, I’m absolutely aware that humour can be a great way to teach and to help an audience to remember points that are being made. BUT, and this is a really big BUT, when that humour is at the expense of a minority group, it crosses the line from being fun and educational to being downright offensive. Attwood’s references to having “learnt Aspergerese” as some sort of language came over as downright crass, and his pointing out of his own proof-reading mistake in one of his slides, followed up by the assertion that “some aspie would probably point it out to him” was horribly reinforcing of stereotypes that really should have been consigned to history by now. I wrote in my notes: “You do not need to be autistic to be able to proof-read a slide properly – I have loads of allistic friends who are superb proof readers!!!” Attwood also used the term “neurotypical” to refer to non-autistic people throughout, never explaining that he was doing so colloquially or addressing the fact that there exist non-autistic neurodivergent people, who he basically erased from the planet with his language. He is, sadly, not alone in this.

Throughout all of Attwood’s sessions I kept having to remind myself that the “they” and “them” he was talking about was actually me. It felt like, as far as he was concerned, I was not part of his audience but one of his “subjects”. The converse of the “humour” was the sad story – tales of family members and patients also elicited responses from the audience, although in this case, sympathetic muttering rather than polite laughter. Throughout the day I was determined to be my authentic autistic self and didn’t deliberately seek out other humans (I was overloaded by the sheer number of them in the room in any case), and nobody spoke to me or approached me. I wondered, when hearing these sympathetic mutterings what people were thinking about the obviously autistic person sitting in the corner gently rocking to myself and chewing on a necklace designed for the purpose (I’d already damaged my fingers by chewing the skin off – ironically during the session on self-harm)!!!

At the outset of the last plenary Attwood directly spoke to us (the audience) with the words “You, as the parent/carer…” which was an interesting experience for me since I am neither a parent nor a carer. Was I even supposed to be at this conference? Was this talk for me at all? I have heard the term “othering” used when describing Attwood’s style, and it seemed very much to apply in this case. He also used phrases such as “somebody must fall in love with an aspie or they’d have died out years ago”, implying that “falling in love with an aspie” was some sort of weird penance maybe? He also seemed to focus rather heavily on those autistic people who would, under the (now superseded) DSM-4 have received (and still do receive, in some places under the ICD-10) a diagnosis of Asperger’s Syndrome, and also used the terms “severe autism” and “classic autism”, neither of which is beloved of many autistic people. I didn’t get much of a sense that he respected the whole of the autistic community with all its richness and variety of experience.

There were other indicators that Attwood was not really up to date with current thinking in the neurodiverse community and had focused his work on the view from “outside” rather than listening to those of us who make up that community. I also believe I heard him misgender someone, though I’m not in a position to call him out on that without hearing from the person concerned and establishing what they are comfortable with. It was also an interesting conference to attend for me as my main experience at conferences thus far has been of academics presenting to academics and many of the questions are often challenges or additions to the work presented. The questions that were drawn from the floor in this case were predominantly of the “please can you tell me what to do about my child / children I teach” and so on. When asked about autistic children in school being bullied, Attwood suggested that some other kids could be “trained to speak Aspergerese” (that phrase again) and could then be issued with “jigsaw puzzle badges”. At the mention of puzzle pieces I nearly fell off my chair. Does Attwood really not know just how offensive the puzzle piece symbol is to many members of the autistic community? Should somebody tell him?

It was a really interesting experience actually hearing all this. And it was in contrast to Khalid Karim’s professionalism and Wenn Lawson’s inclusive friendliness. I’m not saying that Attwood’s work hasn’t been incredibly useful in many ways. His strategies for balancing energy and dealing with meltdowns and shutdowns are excellent, The Complete Guide to Asperger’s Syndrome is a mine of information, and I shall also willingly read the recent book on depression, and it was obvious from some of the questions that many of the people at the conference learnt a great deal from him – I totally appreciate that most of them probably don’t, as I do, have 45 years experience living as an autistic in a non-autistic world, many of them will not have self-harmed or attempted to take their own lives, nor will they have experienced meltdowns and shutdowns from the inside. Neither will most of them have spent the last 9 months intensively studying absolutely everything they possibly can about autism, as I have! In many ways that is my privilege. Although Attwood would probably just tell me I was being a “typical aspie” or some such!

I had read tales online of autistic people returning from Attwood’s talks upset and traumatized. Partly because I was prepared for it, and partly because I treated the whole experience as an academic exercise, that wasn’t the case for me (although my sensory system was so overloaded when I got home that I could barely run a bath because the noise of the water running was so painful to my ears). Half way down the penultimate page of my notes I wrote “I wonder whether I could organize a proper autistic friendly conference” and I remember thinking “Right, my goal is to be speaking at things like this in 5 years time and I’m going to remember this experience”. Going to the conference has, to an extent, started me thinking about what role I might have in the future – what place there might be for an autistic adult who has academic experience, teaching experience, a fierce desire to learn, and is happy to stand up and speak to an audience? Is there some small way in which I can improve the world for all autistic people? Can I facilitate understanding of all things autistic using both experience and knowledge? Only time will tell. I know that, for the time being I’m still learning and still recovering from a severe autistic burnout, but I am also starting to get ideas and little beginnings of things to think about for the future. I might have spent most of the day silent, stimming, unable to access food, and not putting on any sort “social mask” (simply not enough energy for such a course of action), but it didn’t mean my brain was switched off – in fact, allowing myself to stim and not to worry about pouring energy into trying to chat to people or behave “appropriately” was the exact strategy that allowed me to spend my energy absorbing the information and thinking about it in some depth!

The conference has also inspired me to return to serious study of autism. Since my diagnosis in February I’ve eased off a bit and lost the impetus slightly, but it’s now back and I have new things to think about. I sat at the end of the conference wondering how this phase of “understanding autism” will be viewed in the future. I pondered the connection between adult autistics and allistic autism researchers, and how the two might work together and respect each other. I thought about the organization of events, about what might be researched and written, about the lack of focus on adults, and about how the current “understanding” seems to be very much based on models created by non-autistic people.

I got the feeling that this whole area is still very new, and that genuine understanding of autism is still very much under construction. But I also wondered whether Attwood’s approach was beginning to become part of “the past” now and whether greater consultation with autistic adults might be the way of the future. I came away with a sense that if the National Autistic Society really are going to keep going “Until everyone understands” then they have a long job ahead of them, and even their conference organizers still have a lot of understanding to gain – I didn’t return the feedback form at the end of the day because I simply didn’t have the energy, but I shall tweet this blog post to the NAS, and maybe, just maybe, somebody there will read it.

And as for me, was it worth going? Absolutely it was. It took me two full days afterwards to stop feeling really quite ill (there’s a reason these blog posts are being published a week after the event), but the knowledge I gained (about many things) was huge. I’ve also made new contacts online, started generating ideas in my mind, added to my reading list, and gained insight about many things.

Perhaps even more than that though, I proved I could do it. It wasn’t easy, and it was the first time I’d been out of the flat all day, without a known ally to look after me, in over 9 months. It took an awful lot of energy. But I managed it, survived, didn’t fall to pieces, and even learnt quite a lot. It really did feel like something of an achievement!

Uncomfortable

Like a pendulum
Swinging wildly,
Undamped.
My mind has still
Not settled.

Where I fit
Into this new identity
Is still unclear.

I talk to people
And many of them
Expect answers,
Where I still have
Only questions.

Some days
There is despair
And a feeling
Of life being limited
Permanently.

Some days
There is hope
And a feeling
That life will improve
Substantially.

But where I fit
Into this new identity
Is still unclear.

I am suddenly forced
To confront issues
I had discarded
Years ago.

Things very very uncomfortable.
Offspring. Female identity.
Neither of which I possess.
Autism forces these things
Into my consciousness.

Not to mention
My own childhood,
A door I had long since closed
Forced open for diagnosis.

Can open.
Worms everywhere.
Wriggling around,
Demanding attention.

The past
Begging to be analysed

But where I fit
Into this new identity
Is still unclear.

There is no stable backdrop
To my life.
Everything wobbles.
Precariously.

And my mind
Is trying to alter its perceptions
Of who I am
But progress is slow,
Like an ocean liner
Doing a three-point turn.

As I try to plan
For a changed future
I desperately search
For familiarity
And stability.

Autism is exciting,
Enticing, shiny, new.
But this very newness
Makes it also feel
Alien and unfamiliar.

I have never fitted
Into a community
I am not used to being
“Part of things”
As soon as I become so,
I feel uncomfortable
And withdraw…

Where I fit
Into this new identity
Is still unclear.

My past needs
Reframing.

My future needs
Replanning.

There is uncertainty ahead
How functional will I be?
What can I try to do?
What do I want to do?

Preserve the old
Familiar interests
(accepting my limitations)?

Embrace the new
And shiny interests
(accepting intimidations)?

I ask myself
And many times
I search for answers,
Where I still have
Only questions.

Where I fit
Into this new identity
Is still unclear.

My mind has still
Not settled.
It swings wildly,
Like a pendulum,
Undamped…

Where I fit
Still
Unclear

Unknown

Uncertain

Uncomfortable

Double Regret

The original title of this post, which I devised when my mood was somewhat lower than it is today, was “Double Mourning”, but I ditched it as being too strong, and, in fact, not really factually accurate. It also reminded me of those terrible articles, which I’m certain are supposed to induce some sort of emotion, where parents write of their “grief” at discovering their child is autistic. An autistic diagnosis might be a shock, yes, and it certainly makes one think rather hard about rather a lot of things, but it is not really about grieving, especially when the diagnosis is so early that the child in question can be supported to be their full autistic self and get the best possible out of their life with the knowledge of who they are. The child is still there and has not changed – leave the “grief” for those who are genuinely bereaved, whose children have died, been stillborn or miscarried, or were never conceived despite much effort.

However, I can understand that any autism diagnosis is a huge shift in perspective, and can alter expectations and so on. And when that diagnosis comes late in life, although it is, in many ways, liberating and validating and a huge relief, it can also come with a lot of regret that it wasn’t spotted earlier, particularly for those of us who have been disabled by our autistic characteristics and whose quality of life has been generally poor. I have spent much of my life fighting against my neurology, trying to be a person I wasn’t, because I didn’t know who I was, and the effort that has taken has been huge.

And, to add insult to injury, I have spent my life working at absolute maximum capacity the whole time, trying my very best to live up to the high expectations that others had of me (because all they saw was a decent set of exam results so I really was told I could do anything, which turned out not to be true) and which, as a consequence, I eventually had of myself. I lived in a world where a grade B was a failure, where I was expected to be the best, to rise to the top, to be successful and to settle down and have a happy and fulfilled life. It didn’t turn out that way – as I discussed in Expectations Gone.

So while I am not mourning, I am having to look back and deal with two lots of what I shall call “regret” and this is where my situation differs from that of the small child – had I been diagnosed at 4, my parents would have had to replan my future, but there would be very little past to look back on, analyse, and very little to regret about how my life had thus far been conducted. At 45 I now face having to replan my future, whatever there will be of it, but I’m also having to come to terms with the events of the past and how both my being autistic and my not knowing about it has impacted my life.

I cannot help asking myself the question “What if I’d been diagnosed at n?” where n is a number between 0 and 45. Maybe one day I’ll try to do a post that conveys some of my thoughts on this, although, obviously, the whole thing is a hypothetical exercise. It is, obviously, of no practical use, but it’s a way of me working through my past and analysing the effect that being an undiagnosed autistic for 45 years has had on my life. And, because of the sort of person I am, I’m given to such experiments because they interest me. And since I have nobody to talk to about them apart from my long-suffering husband, they might well end up here at some point.

So while I’m playing “autism bingo” (see Disparate Facts) and scrapping my old plans and making new (hopefully exciting) ones, on my more introspective days I am dealing with two lots of regret, and I am sometimes getting really really sad, and sometimes really really angry, and sometimes wishing that I had a time machine and I could go back and have another try at life, with proper knowledge of my neurology and permission to be myself rather than having to act the Strong Woman for so long. There is a part of me that feels that 45 is too late and that my disastered life is beyond rescue now – the lack of any family, the failure of all the jobs, the huge debts, the chaotic living conditions, the shocking mental health, and my current poor quality of life make me wonder if it’s even worth the effort. But there is also a part of me that is interested to see what happens next, and to discover where things go from here, and to find out whether I can build a life that gives me some degree of either success or pleasure, or if I’m really really lucky, a bit of both – I have a husband, an insatiably curious mind, pretty good physical health in many ways, and maybe a few decades ahead to do some interesting stuff.

So why am I regretting TWO alternative pasts? And what are they?

The first is the past that I would have had had I not BEEN autistic. Of course, it’s impossible to tell what a non-autistic version of me might have been like, because autism doesn’t work like that and I’d have been a completely different person, but, if I look around at those who had similar backgrounds to me, then many of them went on to lead very different lives from me. The smiling group photos of friends I see on facebook, the people who enjoy going off on trips together, the people who meet up socially in their spare time and so on. And, of course, there are the families and jobs and houses that many have because they’ve been able to work and make money and use their qualifications to build a life in a way that I haven’t. I know, by the way, that this is not the case for everyone, and also that there are autistic people who have succeeded with families, jobs, houses and the like, but I’m trying to work out the things that didn’t work for me, for which I believe being autistic might have been responsible.

The non-autistic life was also the one that, until 8 months ago, I believed I had. It didn’t even occur to me to wonder whether I was autistic or not, because nobody had ever raised the possibility with me. I believed that I had failed very badly at life, and I was fairly certain that with the amount of work I put in and the skills that I had, that it was rather unfair that things kept going so badly wrong. Of course, the paradox here is that, had I been a different person, a non-autistic version of myself, there might have been areas where I HAVE succeeded that I wouldn’t even have considered because they’re part of my autistic self. Had I been a good socialite at college, I might have got a less good degree because I’d have been in the bar chatting rather than in the library reading every single reference to every single journal article. Had I been good at team sport at school, I might never have spent so much time learning music and it would not have become such an important part of my life. Had I been able to hold down a job properly, I might never had the time to care for so many animals, and so on and so on and so on.

So a big part of this autistic discovery is, to a certain extent, to “regret” that I wasn’t “normal” (both words in inverted commas, because they’re the closest I can get to what I’m trying to say, and I know all the “yes but what is normal anyway” stuff and I’m trying to convey that I’m using the words because they’re the best I can come up with at this point). There is a huge regret that I didn’t find life easier and that I worked so damn hard and because my neurology is different, I didn’t get the same results for the same amount of work that other people did. But I’m not sure the concept of actually BEING neurotypical has much meaning for me, since I haven’t the faintest clue what it might be like. I’ve discussed with neurotypical people and heard about how they only hear the conversation they’re actually having when they’re in a room full of people, and how they can talk about things they haven’t rehearsed, and how they don’t feel sick when they go shopping, and how they feel happier running in groups and chatting, and how they think that a night out at the pub is more relaxing than staying at home doing advanced mathematics, but these things are so far from my experience that I really have no clue what it might be like. One of the things I’d really like to do is to find more neurotypical friends and really discover what life feels like for them, because it’s utterly fascinating.

The second alternative past that I’m “regretting” (again, I use the word advisedly), is the one in which I KNEW I was autistic. There is probably more to say about this, and about the consequences of having known, in a future blog post (the exercise described in the 5th paragraph above). I am certain that had I known what my neurology was earlier in my life it would have helped me no end, although I’m also conscious that it’s much more complicated than that because we have also to take into account the way that the world has changed in the last 45 years, so there are really too many variables to consider. A diagnosis of autism in 1975 would almost certainly have resulted in my future being limited by the perceptions of others, for example, whereas such a diagnosis for a 4-year-old now would produce a very different outcome. I also avoided any efforts to “cure” me with horrific therapies, though I was sometimes harshly disciplined when I had meltdowns, which were taken to be bad behaviour, my sensory needs weren’t recognised so I went through a lot of pain, which I learnt to normalise, and I stored up a lot of inner trauma and anxiety as a result of being bullied, struggling with friends, and trying to be “normal”. But I was able to use the skills I did have. The very things that meant that nobody was able to tell that I was autistic in the 1970s and 80s meant that I was allowed just to proceed with life and as I grew up people just got used to the idea that I was who I was, quirks and all, and, to an extent, I just learnt what was expected of me and did it the best I could.

I’d have liked to grow up with a diagnosis. I’d have liked my parents to have been able to access groups on facebook, to learn that I wasn’t being awkward, that I wasn’t actually trying to be headstrong, or picky with my food, and that I wasn’t trying to be bad, although I always felt I came across as bad. I’d have liked my schools to recognise that I was putting in lots of work, even though it wasn’t the sort of work that they were expecting, and I’d like to be able to look back on my childhood now and see it as a happy fun-filled time, but no matter how hard I try, I can’t do that. I see it as a constant learning process that required behaving well and doing well at schoolwork. I’ve heard people describe childhood as some sort of “carefree” time, but I’m struggling to think of anything like that in my own past.

But it was the 1970s. Nobody knew. And I forgive those who didn’t see how much I was struggling because they didn’t know what to look for and because I didn’t know either. It was just the way it was back then.

However, when it comes to adulthood, I have very different feelings. By the time I was in my mid-20s I was already very mentally ill. The masking that I’d learnt through childhood was already taking a heavy toll on me, and if I’d known in my mid-20s that I was autistic and had had the opportunity to learn what I know now then I believe my life would have been very very different and I’d be in a much better position with a much better quality of life than I have now. I’ll try and work out why that is at some point, and exactly what I would have done differently, partly because it might inform my own future and I can, I hope, stop making the same mistakes I’ve been making for the last 20 years, and partly because it might be useful for others, who are in their 20s and recently diagnosed.

What I do know is that I’m reading a lot of articles online about “late diagnosis”, and I read and read and read and it sounds exactly like me, and then the punchline comes: “and it was like this for the first 25 years of my life”!!!! And I sit there and think “25? That’s TWO DECADES AGO for me!!!” I feel old. I’m middle-aged. I’m in the middle of the menopause. My hair is grey (it is grey at the moment because I can’t dye it because I’ve destroyed my scalp too badly). Some of my contemporaries are grandparents. How is 25 LATE for anything? At 25 you have almost your whole life ahead of you. You have a maximum of around 20 years’ masking to undo, you can be YOU for almost all your adult life!!!

Now, of course, I realise that this is my perspective as a 45-year-old. And I am encountering people who are newly diagnosed autistic in their 50s, 60s, and even older. I’m sure a newly-diagnosed 70-year-old would look at me and think how young I am, how much opportunity I still have (especially with my relative physical fitness), and would ask me what on Earth I was complaining about. And, of course, they’d be right, that my lot in life is considerably better than theirs was in very many ways (though also worse in others – I believe there are ways in which some aspects of the past were more advantageous to autistic people than some aspects of the modern world – that’s yet another blog post for the future).

However, when I look back on my life and wish, desperately, that I had known I was autistic, the point that I really wish it had been discovered was somewhere in my mid-20s. This was the point at which my mental health took a huge nosedive, the point at which life started to become seriously seriously tough for me and moved from anxiety into severe depression and when the suicidal ideation became suicide attempts and I didn’t understand why things were so very bad. Had I had the knowledge about my neurology back then that I have today, I could have, instead of going through months of hard CBT to try to cope with supermarkets, realised that they did indeed make me sick and I wasn’t being pathetic and the answer was to spend less time in them and wear dark glasses. Instead of reading the guides to good mental health that told me to spend lots of time with friends because that would be good for me and forcing myself to go to the pub after rehearsals and so on, I could have gone home and saved that energy. I’ve spent a lot of the last 20 years PUSHING through, fighting through, being strong, making myself do the tough stuff because I looked around and everyone else could do it so I knew that I should be able to as well. But the cycle of push, get sick, fail went round and round, and in 20 years of mental health service use, nobody suggested autism. That, I really do regret.

I survived my childhood. I even did reasonably well academically. It wasn’t amazing, but it wasn’t the spectacular disaster that the last 20 years have been. I’m also now questioning how anxious I really am, and wondering whether the high levels of anxiety contributed to our being unable to have children, and if I’d allowed myself enough downtime and been aware of just how anxious I was, whether it would have helped. That, of course, I can only speculate, because it’s impossible to know. I am just coming to realise how high my anxiety levels have been all my life, but because they’ve always been that way, I’d never really noticed them. With my diagnosis has come a relief, a liberation, and a permission to relax and be myself that I’ve never felt before in my life. I don’t have to try to “achieve” any more, because I work on a different system and I have to operate by different rules in order to compensate for the way I perceive the world. Now that I do know, I can start to figure out what works and implement it. I can start to work on reducing anxiety, on planning a future that’s not based totally on striving to be the best or work the hardest, because those things aren’t suitable for me.

And I really do wish I’d known all this 20 years ago. The biggest regret I have is not that I am autistic (I’m not sure, in many ways, that that’s even a regret at all, because the notion of a non-autistic me simply doesn’t make any sense), nor in some ways, is that it wasn’t spotted in childhood (and getting the 2017 “diagnosis” for my 4-year-old self has, in many ways made peace with that anyway), but that I have spent a quarter of a century of my adult life not knowing I was autistic. THAT is the big regret.

And that’s the bit I’m most still struggling to come to terms with, the bit that needs the most work. I still need to do the thought experiments for “What if I’d been diagnosed at 40, 35, 30, 25, 20…?” I still need to work out how my own history intersects with my experiences in the mental health services, the knowledge of autism (particularly among those of us assigned female at birth), and I still need to work out where to go from here.

There’s not much I can do apart from keep going with it all. Reports from those who’ve been through similar experiences suggest it will take a year or so. I’m still less than 8 months post-discovery and less than 8 weeks post-diagnosis, so it’s not surprising I’m not there yet!