On Being Diagnosed as Aspergers, Part 2.

I probably don’t need to write this follow-up to my blog of March this year on being diagnosed, at 70, at last and rather late in life, with Aspergers/High-Functioning Autism.

Indeed, just thinking about starting this piece reminds me just how difficult I’ve always found writing to be, whether agonising over a poem or short story for English at school, or composing an essay about the Russian writer Gogol at Uni, or doing the grain harvest nightlead for Reuters from Moscow in the mid-70s, or a BBC FOOC (From Our Own Correspondent) from Beijing.

Ironic, isn’t it, that I then chose a first career as a journalist.

It was only in February that the lovely Marilyn Sher, Norwich-based psychologist specialising in these things, confirmed in outline and then in much more written detail in June that, yes, if it quacks and walks and looks like an Aspergers duck, Aspergers is what it is.

Since then, I’ve experienced a cascade of new understandings, memories and awarenesses.

So, taking a deep breath in the long Covid-informed months at home without travel, I’ve gone back to reconnect with that little lad in the photo above, awkwardly and so well-remembered still, sawing at a wind-toppled tree in, probably, 1957, to see if I can put this one life and some of its confusing moments in a different and newly-understood context.

In part, I’m doing this for psychotherapist colleagues who’ve started to ask me, now that I’ve gone public and with a view to working with their own Asperger clients, what this “condition” if one might call it that can feel like on the inside.

In part also, hoping to reassure and perhaps also to inspire, this post is for ordinary folk out there who either know or suspect that they might themselves be ASD, or Autistic Spectrum Disorder as it’s termed in the DSM5 Diagnostic and Statistical Manual (I’ll come to the term “disorder” later), to encourage them to explore, with kindness and curiosity, their own stories.

Writing this has been for me useful preparation for a day-long seminar in November on EMDR (Eye Movement Desensitisation and Reprocessing, my psychotherapeutic speciality) with ASD being led – with a slot for me – by my good friend and EMDR colleague Caroline van Diest.  

Not cheap (worth every penny at just under two grand, though it can be done less comprehensively and expensively), I do now have the full, formal NHS-compliant diagnosis which would nowadays have qualified me in my younger years for special support (and understanding) at school, Uni and in the workplace, and, I doubt it not, rendered me a very much happier bunny.

To sum it up, I guess I’ve come to two central conclusions.

One is emotional, wrapped around what I think is best described as GRelief, a mixture of grief and relief.

GRelief captures on the one hand the relief of finally having an explanation for why, far more than would be expected from the more obvious attachment- and parenting-informed distress and trauma of early childhood, this one life has been such hard work.

On the other hand, GRelief allows me to grieve the loss of what might have been had I been understood much earlier on my journey – the loss of easier friendships, of gentler marriages, of career experiences that might have been different, of ease with self, of comfort-in-own-skin so longed for but so rarely felt.

The other conclusion is observational, reflecting a similarly reassuring understanding of how my brain works, moving in my case in circles – out round and back, out round and back – and rather differently I now realise to those of neurotypicals, as non-autistic folk are termed in this new world of mine.

Other Aspies, like the amazing Templin Grandin in the US who had such an impact on global understandings of Autism, talk about thinking in pictures rather than in straight lines, but that just illustrates how, as the specialists say, if you’ve met one person with Autism, you’ve met one person with Autism.

Although drawing from a shared buffet of experiences, each of us on the spectrum is unique, with ASD being more like a fruit salad than a one-size-fits-all diagnosis. A kaleidoscope rather than a linear spectrum.

Marilyn described it to me when we met as having my internal emotional volume controls all at the same level all the time, which helps explain how my own thought processes would so often freeze in overload and inward shame whenever for example doing serious political interviewing during my time with Reuters and the BBC.

That was true both on the receiving and questioning end, whether as World Service Diplomatic Correspondent interviewing Maggie Thatcher at the end of a Commonwealth Summit for example, or going completely blank three times in one short live two-way with the late Gordon Clough on The World At One in December 1981 when trying to explain martial law in Poland.

As Marilyn and her colleagues observed so well in our long diagnostic interviews, I learned over the years so well to mask my internal confusions and emotional dysfunctions that very few outsiders, whether colleagues or consumers of my BBC reporting, needed to suspect how complex and painful the story was behind the façade.

I now realise that it isn’t that there is something fundamentally wrong with me, but a great deal that is different.

It’s difficult to explain, but let’s start with numbers, which I visualise as physical concepts in space.

Forty-nine, consisting of seven sevens in a ladder up from 14, 21 and 28, is up there just underneath the 50 shelf, hanging in space 10 lines below 60 with one hundred looming cliff-like over the numerical landscape.

Beyond that, 144 is as far as my conceptual numbers horizon stretches, a childhood-maths-informed 12 x 12, since the 1970s with a great big Tupolev aircraft sticker attached portraying the ill-fated Soviet TU-144 supersonic airliner copied from Concorde.

The Lord’s Prayer, so well learned in childhood, starts here, on the right, and moves up from Our Father and Art in Heaven to arc back over to the left via Name Hallowing and Kingdom Coming and Will Being Done, with Earth below the line as Heaven is above it, plus Daily Bread and Forgiveness-to-Others-as-Self below, to curve back down-and-in, towards an almost-completed circle through For Ever and Ever Amen and It’s Done.

It’s probably this need for structure, certainty and predictability that has compromised for as long as I can remember my capacity to be with more than one person at a time. A core sense of alienated self has run through my life like the proverbial letters through a stick of Brighton rock.

It’s better than it used to be, but unless I have a sense somehow of being in control of the proceedings, I can to this day go almost catatonic in group settings.

At editorial or management meetings at the BBC, I had no idea know how to take part as an equal. Group psychotherapy settings during my training were pure torture, and it still hits me on occasion at the dinner table, even with my own beloved children and family.

I have always loathed team sports, or acting, or wearing fancy dress.

And although I learned as BBC correspondent to enjoy cocktail and dinner parties, if conversations didn’t focus intensely on the politics and the journalism, I was emotionally at sea.

Just as I would bunk off school to avoid sports afternoons, I have hated and even in later life needed to disappear from parties, echoing as they still do the misery of feeling an outsider at my own first-remembered birthday at the age of four.

When joining Reuters as graduate trainee in 1973, a memory burns of being tasked with my fellow newbies to write, using copy from the Press Association, a summary nightlead, as we called the afternoon write-through, on that day’s wedding of Princess Anne and Captain Mark Phillips.

In total left-brain shutdown, I seized up totally, unable to get beyond the first paragraph.

Freshly appointed as Berlin correspondent a few years later, still in my 20s, colleagues from the BBC’s German Service arranged a dinner party for me to meet some useful academic sources. For the entire evening, I was silent, inwardly frozen solid. If reading this, they might remember, though they were too polite at the time openly to note any surprise.

A decade further on, with high-profile and successful postings behind me as BBC Central Europe and then BBC Radio’s China Correspondent, I was on the parents’ committee of our children’s primary school in North London at a meeting to discuss the stalls, games, PA systems, prizes and so on needed for the summer fete.

Yet there I was, by now the World Service’s Diplomatic Correspondent no less broadcasting daily to global audiences of millions, incapable for two whole hours of saying a single word.

On a silent Sufi retreat in the late 90s as retreatants assembled around a camp fire, I recall going into such emotional overwhelm that I needed literally to run away from the group, down the hill into the darkness, in tears and crying aloud, I don’t want to be seen, I don’t want to be seen.

Over 20 years of reporting from the front lines of the Cold War, the evidence would suggest that I managed to overcome at least some of my barriers to writing.

But for all that time, starting out on a BBC despatch or a Reuters feature remained, inwardly, pure torment. Odd, I know, given that I think it fair to say that I was viewed in my 30s as one of the more promising BBC correspondents of my generation.

As I watched colleagues like Jeremy Bowen of the BBC, or Mark Wood as my successor with Reuters in East Berlin, or my old friend Timothy Garton-Ash going on to lifelong journalistic or academic brilliance with elegance and, it seemed to me, ease, I couldn’t understand why, for me, the writing and the politics felt such incredibly hard work – inauthentic and somehow wrong.

Once I was back on base in London after 1992, no longer reporting from the field and in a management role at the World Service, my Bush House language service colleagues did occasionally share with me their bewilderment at the disconnect between the high-profile, high-flying and hyperactive foreign correspondent they used to know, and the awkward and often judgement-poor Regional Editor they experienced at editorial meetings and programme reviews.

It was also in the 90s that someone very close to me at the time whom I enormously confused commented that I was, and I quote, the most selfish person she had ever met.

Self-absorbed would have been a kinder term, but I now understand what she meant, as observation rather than judgement.

Even secret police agents tasked to monitor me as Reuters and then BBC correspondent covering East Germany in the late 70s and early 80s clocked how much I struggled psychologically.

One strikingly insightful end-of-year report which I found in the Stasi’s voluminous files on me, running to nearly 3000 pages as I discovered on opening them up in 1999, noted that “Martin” (the cover name East Germany’s espionage establishment gave me) “hadert mit dem Schicksal”.

Martin agonises about his fate.

I do take issue with how the Stasi had me down as an anti-Soviet slanderer set on undermining the socialist system, and there was plenty of detail they got wrong. But on this, my tortured inner world, the Stasi was spot on.

The thing I now realise about being Aspergers is that my own emotional distress responses are less rooted in early and formative childhood traumatic experience than I had long assumed to be the case.

If they were, all those years of pre-EMDR talking therapy through the 90s and into the 2000s might, I suspect, have made a rather greater difference than they did.

With Autism, as opposed to attachment-related trauma, the neurological fundamentals don’t seem to change with time, although once understood and accepted, I do know that they are for me now losing their potency.

My partners and indeed therapists over the years used to find it strange to be on the receiving end, despite their feedback and invitations to change, of repeated insensitivity or emotional carelessness.

How come, they asked themselves, and each other, he doesn’t LEARN not to do or be like that!

Over the years, of course, I hope I have learned to manage relationships rather better than I once did. But while I need to know that my loved ones are there, I do still take intense comfort from being away from them, quietly in a small room on my own.

My tiny new office at home in North Norfolk from where I do psychotherapy and EMDR trainings for colleagues around the world is literally a padded cell, walls covered with sound proofing rather as in the mid-80s I took delight in hanging heavy curtains to turn a windowless Beijing boxroom into my BBC radio studio.

From the 2010 movie about the life of Temple Grandin, telling the story of a cattle-style wooden holding pen she made for herself to soothe her emotional distress, I now know how safe and reassuring the sense of physical containment can be those of us with Aspergers.

With an earlier diagnosis, I very much doubt I would have gone into journalism, although paradoxically if I had, I don’t rule out the experience having been so different that I might not have needed in midlife so conclusively to turn my back on my high-flying career.

(If anyone reading this is curious about my reporting years, by the way, I’ve just, typical Aspie, digitised my entire collection of cassette tapes from a decade’s coverage of China and the WS diplomatic beat from 1984-1992 as the Cold War ended. You’re welcome to browse this undigested archive online in its very rawest form).

I mentioned the S-word earlier, so this might be the moment to say a bit more about the intensity of shame – very common I now realise for those on the ASD spectrum – which right up to my diagnosis I nursed about relational interactions I felt I had got wrong over the years.

I started listing them (Aspies like lists, by the way) in pre-Covid times just before Christmas last. In no time, going back to my earliest memories at three and four, I had registered well over 100 entries. I could have easily listed a thousand.

There’s some sadness as I now look over the list, so familiar and so intensely ruminated upon.

That clumsy and criticism-generating conversation with a teacher reported disapprovingly back to my parents when I was 10.

My continued freeze when thinking of the books I know anyone else with my experience could, would and should have written by now.

That naïve, cloth-eared farewell to the presenters across the set of BBC Breakfast TV very much later in life after an interview on an issue I really didn’t understand at the time. (I think it was Alzheimers, that other A-word.)

The good news is that now, as an Aspie, every entry on that shame list makes sense. It feels like a spell has been broken, an experience I’ve come to observe and understand in my clients when working with childhood-embedded trauma. To my intense relief, the shame of 70 years is gone..

So, stepping back a little, what are some of the defining characteristics of Aspergers?

For me, as I now understand for many others, it was reading Mark Haddon’s brilliant The Curious Incident of the Dog in the Nighttime a good 15 years ago now that first alerted me to the idea that I might be on the spectrum.

I didn’t take it over-seriously at the time, and my then-wife and I used to joke rather awkwardly, as we talked of my computer-related obsessions and moments of emotional clumsiness, about me just being a bit Aspergery.

It was when I chose to return in 2013, at nearly 63, to my childhood home in Sheringham on the North Norfolk coast and to my first wife Jutta (an ever-so-slightly-turbulent transition, but worked out well in the end) that I began to realise that this might go a bit deeper, and that if I didn’t clean up my emotional act, she might not say yes to my invitation to give our by-then-long-defunct marriage another try.

It took six months, and despite some hiccups, misgivings and transitional second thoughts along the way, she did say yes (and rather romantically so) on the top of Machu Picchu of all places in September of that year.

Fourteen years on from our separation, we were both by now experienced psychotherapists, and Jutta’s experience of Asperger males in her therapy practice had given her the understanding and compassion that would have made such a difference to our capacity to stay in relationship when we hit the rocks first time round in 1991.

I guess the next major step for me, rather closer to today than that transition from second wife back to first and from second marriage on to third, was to complete an online Autism Spectrum Quotient test, based on the work at Cambridge University of Simon Baron-Cohen, one of the world’s most influential thinkers on the diagnostic structures of Autism.

The ASQ test has 50 questions, scored on a four-point Definitely Agree to Definitely Disagree scale. Anything over 32 indicates with 80% or so reliability that Autism is probably in the mix.

Questions range from “I prefer to do things on my own” to “I frequently don’t know how to keep a conversation going” and “People often tell me I keep going on and on about the same thing”.

I came out with a score of 35 and with time, prompted by other BBC journalists like Robert Greenall also coming out as Aspergers and an inwardly very difficult Christmas 2019 with the family, I decided finally to do something about this.

It’s not just the ASQ one needs to do for a proper diagnosis, but also a full set of interviews and further questionnaires with a serious specialist like Marilyn, my own favourite trick-cyclist, as British soldiers jokingly term their military psychiatrists. (I’m very much thrilled also that she calls me her favourite Aspie…)

These include questionnaires exploring Empathy and how one was experienced as a child by close relatives, scoring in my case 20 out of 80 on the former (80% of Autism Spectrum folk score 30 or below), and 24 out of 31 on the latter, where just short of 90% of children with ASD score 15 or more.

On empathy, the low score helps explain to me why I can, on the one hand, easily survive and work with the most intense emotional experiences my clients bring to psychotherapy, and on the other hand why, for example and to my curiosity and surprise, I felt only intellectual compassion when reports began arriving at the World Service in 1996 of the shootings in Dunblane, or in 2000 of the sinking of the Kursk submarine in Russia and the entrapment of its crew.

It’s not that I don’t care.

Quite the opposite. I do care, intensely. But my internal emotional response to experience is more complex, confusing and perhaps as a consequence at first more left-brain logical than it is for most other ordinary folk.

For my diagnosis I also underwent three lengthy in-person interviews with Marilyn and two colleagues, one a speech therapist and the other a specialist in sensory sensitivity, as they explored my reported experience of life, tested various calculating and non-verbal skills, and observed me relating to them in the room.

Their conclusion? They found me, and I quote with pleasure, a delightful man, though verbose at times (!), exceptionally bright (!!), rigidly sticking to routines and procedures and struggling with change, and, rather typically of Aspies, absurdly (my word) brilliant at language and languages.

I mean, who else reads a Hungarian dictionary or Teach Yourself Polish on a family holiday for fun, as I did in the early 80s on a then-Yugoslav Adriatic beach when taking a break from covering Central Europe for BBC radio.

I adore Hungarian by the way, taking almost visceral pleasure from how it structures grammar and meaning. In another universe, I would take months out to live there and soak up the language all the way to fluency. 

It took me just three weeks in 1984, when appointed BBC Radio’s China correspondent, to learn pretty much the entirety of Mandarin Chinese grammar. And although I knew better than to commit to learning the characters – something requiring enormous and time-consuming dedication even from an Aspie – it wasn’t long once posted to Beijing that I could conduct a simple political interview in the language and get around the country with reasonable comfort.

Back to my formal diagnosis, Marilyn and colleagues noted that thanks to my intelligence and ability to learn by observing others, I had learned over the lifespan to mask many of my difficulties, however at the cost as they put it of feeling drained and overwhelmed by social interaction and the impact of being Aspergers on perceptions of self.

In conclusion, and in the cautious language of their trade, they wrote that “based on all the assessments outlined above, there is clear evidence that Mark experiences difficulties in the quality of his social interaction, social communication, social imagination and patterns of activities.

“These difficulties indicate that he meets the criteria for a diagnosis of Autism Spectrum Disorder. His particular presentation is often referred to as High Functioning Autism (or Asperger’s), though this is not a formal diagnostic term.”

So, that’s nice and clear. But what next?

For some folk – including clients of mine now on their own journeys of Aspie-informed self-discovery – knowing that Autism might be part of their story is much less of a liberation than it’s been for me.

But learning as much as I have about this way of being in the world (Aspergers, by the way, really shouldn’t be called a DISORDER, but much better understood as DIFFERENCE), the diagnosis has given me – is giving me, as it remains a very intense journey – permission to be me, as best I can.

I can still be a challenge, I know, and there is still sometimes a rolling of the eye in the family at home, with readers of blogs, or with colleagues on my fabulous EMDR Focus team, when on workshops or in conversation I say or do something that would be unthinkable to a neurotypical. 

But while it hugely compromised my progression in the world of journalism and writing, the circular, structured and self-referencing way I experience my own inner world does seem to make me a rather good practitioner and trainer in EMDR, providing a reassuring and containing framework for the transpersonal, psychodynamic and person-centred principles of my core psychotherapy training.

As Marilyn and her team observed in their comprehensive 19-page report, I’ve adapted exceptionally well over the past 70 years, where others on the spectrum are, as they put it,  not always able to mask or to develop support networks, spiralling in turn into depression, anxiety and isolation.

I talked at the beginning of my two main conclusions, emotional in moving through what I call Grelief, and observational in understanding at last how my brain works.

In conclusion, and turning to my fellow therapists working with clients with ASD, my third professional conclusion would be an invitation to approach Autism as an inspiration, a challenge and an opportunity, to explore a world that’s different to your own.

Be radically curious with your clients.

Ask them what it’s like to be Aspergers – how the world has looked and felt to them inside over the years, especially if doing this work much later in life. There will be so many stories they have shared and which can now make sense. Aspies don’t like it when our experience is pathologised or made wrong.

If using EMDR, and using the jargon, I’d suggest that the best targets for reprocessing involve the interface between an Aspie’s internal world and those myriad moments of subtly traumatising response we experience from the outside world to what can be confused, confusing and clumsy ways of communicating and connecting.

The trauma of autism isn’t primarily in being ASD.

It’s in not having the intuitive tools we need as human beings easily to be in relationship, or the language to notice, name, understand and share that it’s OK to be different.

As Gabor Mate puts it, trauma is not the external event but the internal wound. Those of us with Aspergers can be carrying much deeper wounds within than you might know.

Traditionally, and going back to the early teachings of psychoanalysis, therapists are discouraged in their training to disclose too much, indeed in some models anything, about themselves.

Working as a psychotherapist, it is indeed important to know what it’s OK to share about oneself with clients, and what is best contained.

But the blank screen approach is, rather emphatically, not how I work.

And while my supervisors and colleagues not infrequently (and appropriately) remind me of the importance on occasion of being perhaps a tad more careful just how much I share, authenticity and congruence are central to who and how I am as a therapist.

I was exploring these qualities with one of my longest-standing clients a couple of months ago, and commented that all my life, although less so now that I am finding my feet in attachment-informed EMDR, I had so often felt like a square peg in a round hole.

The world, she replied, needs square pegs.

To this one Aspie, she couldn’t have put it better.