Marc Segar and Existential Angst: an ASD interview by Donna Williams
Marc Segar was a man with Asperger’s back in the 90s before today’s autistic pride movement, who aspired to non-autistic ‘normality’, achieved a semblance of it, and died after jumping a divider and walking into oncoming traffic on a UK motorway. What follows is an interview with John Midgley (also known as Creddy Eddy), a man with Asperger’s who has made himself familiar with You Tube enthusiasts and whose passionate interests include Marc’s works, Here’s the interview
DONNA WILLIAMS:
Hi John. You are fairly new to the autism world since being diagnosed with Asperger’s as an adult. But you were always an observer of fellow human beings and are also quite a sociologist. Do you like people as much as you like watching them?
JOHN:
This is an interesting question, and it turns out to be quite difficult to answer properly, so I’m going to take time on this one.
The way I understand it, this question asks if I prefer ‘”connecting” with people’ to studying them. First, I’ll define “connecting”.
As a child, I was lucky (or unlucky) enough to have people in my world that I was able to “just get”. I could understand and be unsurprised (to a certain extent) by the things they did and said and everybody else just seemed like an unpredictable “ghost”. But the people I could get were few and far between, and looking back, they were all probably either on the autistic spectrum or “manipulative”. Sometimes those two characteristics would be combined in the same person.
I strongly suspect that my “mirror neurons” were firing for the people I “just got” and when I was young I thought that everybody had a small number of people they could “just get”, and I thought nothing of that because I was always told that “everyone’s unique”. But now I’ve come to realise that the difference between my world and the non-autistic world is that their world is full of people that they can “get” and that they have a small number of “ghosts” who are people who are either manipulative or on the autistic spectrum.
DONNA WILLIAMS:
that’s a funny conundrum.
JOHN:
Now to answer the question, I think all my life I fantasized about connecting with people in the way that I’d been “getting” these people, however the people I could communicate with were also socially inept in one way or another, so we basically only talked about common passions and my social side seems to have missed out on “experience”. The upside of this was that I quickly gained a whole lot of expertise with technical things.
DONNA WILLIAMS:
My journey was related but different. I was often alone through childhood. The friends I did make were kids who didn’t speak English, were from abused backgrounds, were victims of bullies, were developmentally odd, grew up to be gay, were outcasts for various reasons, had just arrived and had no friends yet. This actually gave me a great study of social diversity and formed a great loyalty to underdogs of various genres. By my teens, though, I was attracting sociopathic teens and young adults most of whom were into drugs who found me easy to exploit or entertaining to watch or make fun of. From my side, at least it was inclusion. With the help of a shrink I got outta there but it meant having nobody at all. Did me good though. I was a natural nomad and I’m naturally solitary in any case.
JOHN:
On the other hand, up until 2004 I never had more than an occasional shot at actually trying to socialise at a “getting to know you” level, and when I did, I would go about it in completely the wrong way. I’d try to get involved with my friends lives and because we were all on the spectrum, we would end up damaging the relationship.
DONNA WILLIAMS:
oh, like ‘fingers in the pie’ thing. My only non-solitary personality trait (I’m artistic, vigilant, idiosyncratic, solitary) was the self sacrificing trait which is all about trying to disappear by helping others. It’s a great way to minimise one’s visibility (except when one ends up accidentally famous 😉 So I can totally relate.
JOHN:
In 2004, I decided to figure these ghost people out once and for all, the way I’d always been able to figure technical and physical things out. This was because I was sick of somehow getting involved in their lives and never getting anything out of the experience, because I couldn’t tell exactly who or what was responsible for the catastrophic relationships I was already in and because there was a complete lack of information about this kind of thing that was actually usable.
DONNA WILLIAMS:
Constructive choice.
JOHN: I decided to go to pubs and other social events because I needed a steady supply of new “ghosts” in social moods to meet, and I armed myself by turning my “embarassment circuits” off and testing every new thing I knew about socialising with new people. People would talk to me and stuff so I knew there was nothing wrong with my appearance, even though it is fairly odd, you have to admit. 🙂
DONNA WILLIAMS:
I don’t know, its rather Daddy Cool crossed with Status Quo and a plaited beard thingy. Very ‘normal’…. in the 70s 😉 I’m idiosyncratic. Wierd’s fine with me.
JOHN:
Not knowing that much about autism at the time, I chalked it down to communication.
It took me less than 2 years from that point to realise that I was learning superficial things I was doing wrong and that these lessons were endless. The conversations would always end in tragedy somehow and I needed a way to put it all in context, so I went back to the drawing board to research everything I could find about asperger syndrome. None of it was useful for my purposes.
DONNA WILLIAMS:
Possibly because much of it was written by non-autistic people, but maybe also because as a natural ‘giver’ others on the spectrum may not have shared this trait, this passion not just to understand themselves but to understand and help others. The self sacrificing trait is more typical in teachers, social workers, nurses. Sure, there’s some on the spectrum but plenty more who aren’t.
JOHN:
In a last ditch effort I asked around the autistic communities if anybody knew of a source of information about interacting with non-autistic people and someone eventually handed me Marc Segar’s work. At first it only succeeded in teaching me how little I actually knew, but with it, and another one by John Taylor Gatto
DONNA WILLIAMS:
Yes, I met Marc when I lived in the UK. We were both interested in helping families and people with autism. I also got to know John Gatto well. I didn’t know John wrote anything though. Both are deeply soulful people with passionate artists souls. Both have cared deeply for humanity.
JOHN:
Through their work I was able to actually “get” where non-autistic people are coming from enough to understand the stuff they’re saying when they socialise.
Now however, I have a whole new set of issues to deal with which basically leaves me not wanting to get involved in their world right now. The big one is the warning of how Marc Segar’s story ended – with his death – and the other is how to actually finish writing my understanding down in a readable way. I’m writing it in the same way that Marc’s book is written, but in a way I hope that it will be used to hold a mirror up to non-autistic people more than to wedge autistic spectrum people into that world.
DONNA WILLIAMS:
You’re treading the humanitarian path. It’s always one best tread with few expectations. Passionate idealists dream of bringing humanity and equality and understanding to many who aren’t ready to look for it. They shouldn’t judge the worth of their efforts by how its received. A work is worth doing in its own right.
JOHN:
The short answer to the question is that I like people just as much as I like watching them but the fantasy of connecting has taken on a much greater life than the reality. Another factor is that I have always found it impossible to deal with things I don’t understand at a technical level, so if I want to overcome my socialising problems I have to understand the things I learnt wrong before I can expunge them from my system.
DONNA WILLIAMS:
Some people are an acquired taste, like anchovies and olives. We can’t all be crackers and cheese. We won’t please everyone. Some of us are on the social peripheries and maybe that’s actually a pretty OK place to be once you stop being an apple dreaming of being cosy in a bowl of only oranges.
JOHN:
I also find it intriguing that when I read other peoples perspectives of what autism and aspergers is, little pieces of information tend to fall out about what their world is like.
For example, someone once tried to explain “lack of social imagination” as not having the little movies in ones head that play out the possibilities during a conversation. Well, that’s visual thinking. Non-autistic people have visual thinking, but they apply most of that energy to surviving and thriving in the social and physical worlds.
DONNA WILLIAMS:
Totally, in fact visual thinking is common to around 60%-65% of the GENERAL population, Verbal thinking to 20%30%. People on the spectrum have become adept at creating
cosy new stereotypes. Personally I’m a natural non-conformist, I’d rather break stereotypes or at least seek out how I might manage to in my own life.
I’m certainly someone who gets all in a muddle due to what a friend terms ‘existential angst’. I may be autistic with an IQ under 70 but like many writers with
autism, I’m irretrievably deep and I’m compelled by a deep empathy for and interest in the human race. What is it about the humans you like and what most distresses
you?
JOHN:
It’s easy to over-estimate the importance of IQ. As an example of this, my father had an IQ over 176 and was in the top 2% of MENSA, yet he had a less “successful”
life than everyone I know. There are many who say that IQ doesn’t even exist and that it was just invented as yet another means of categorising people in order of
importance.
DONNA WILLIAMS:
In my case I just see it as a test which reflected HOW I learn rather than my intelligence. I have no doubt I’m intelligent. But I struggle a lot to learn through visuals or spoken or written words. I have to see movement and patterns, find systems, I have to touch things, learn physically and I have to DO.
JOHN:
Both of my parents had existential angst too, but they were always able to forget about it when they realised they could do nothing. My mother tried to teach me
this, but I see the effects it has on people and I can’t entirely forget. I see and feel the effects of not forgetting too.
DONNA WILLIAMS:
yes, someone once said it was a great talent to be unable to forget (I can remember mundane details of movements, actions, spatial things etc, from 30, 40 years ago and whilst short term memory is all tumbled with holes, long term is pretty incredible as ‘serial memory’) but I said, no, in fact the ability to forget is the talent, that the inability to forget is a reflection on a struggle to filter and a break in the feedback loop of what is of relative significance and what is not. Fact is those unable to forget end up with a brain crowded with mosaic bumph, some of it annoying, scary, distracting, and some of it full of PTSD loops that feed adrenaline addiction and chronic anxiety. Not sure we should call all of that talent.
JOHN:
I was always deeply intrigued by the fact that there is essentially nothing for humans to be afraid of except other humans. There is enough food on this planet to feed twice its population yet people starve on the streets of the worlds wealthiest nations. We build machines that do our work for us and people lose jobs and get shoveled into industries such as telemarketing which are invented to create work. There’s more than enough land to house everyone yet we still have turf wars. We build societies that look after everyones needs yet we largely use the law of the jungle to survive them.
DONNA WILLIAMS:
It’s hard to be logical, deep AND sensitive. Once one has seen life so clearly with the detachment of the systematician, the empathy of the humanitarian and the passion of the artist, its hard to find reason to hold on. That’s why if nothing else those like this should hold on so the others like this don’t feel the only one’s on the planet who see the world so clearly in all its shit and glory.
JOHN:
I often have an ability to just switch off when I realise that there’s nothing I can do to help. When this happens I feel guilty but I tell myself that “I can’t help if I can’t live”, and that my resources are better spent looking for better solutions that EVERYBODY can use, then I have trouble doing anything else until I either realise nothing can be done or I find a solution. Quite often the solution is to just roll it into the problem in the last paragraph and leave it for another day.
DONNA WILLIAMS:
Ah but you know guilt is the self sacrificers middle name. We all have our weak spots. I have several mantras. One is this: Guilt Is Futile. When you think about it, you’ll realise, guilt changes nothing, helps nothing. Action may help, but guilt does nothing, its futile, so is shame. Yet society keeps winding us up like toys, reminding us to feel such things in order to drive us to fit into its various money machines. In the end we can listen to this broken record or not. I have had a ‘conservation compulsion’ as part of OCD and exposure anxiety. It’s managed and medicated now but essentially, yes, I still have days I feel too guilty to easily go eat, that I feel too existant, too present, too much of an additional and unnecessary burden to feed myself as one more ant on the planet. But then I remind myself, this is OCD bullshit and say my mantra, ‘guilt is futile’ and I go eat. We can all get too much of a trait, be it guilt or narcissism. Some people feel they never get enough of what they feel they deserve or have a right to over others. Some people are just as messed up struggling to dare presumed the right to exist and eat, drink, pee, or buy. One can spend one’s life dancing with the real ghosts of OCD and anxiety disorders and existential angst or decide to turn off the broken record, at least from time to time, enough to get grounded and know self versus condition.
JOHN:
What I truly love is that there is sooo much potential to do better here. Non-autistic people are often completely stumped by the fact that projects driven by autistic spectrum people like Wikipedia and Linux can work as well as they do, and it’s often because people sat down and basically invented a set of social rules that not only protect the project, but the people participating in it.
These kinds of invented social rules exist in just about every form of social setting that attracts autistic spectrum people except “autistic communities” intriguingly enough. One only has to have a passion for the common interest, and the rules often just work. When they don’t, they’re replaced or projects collapse.
DONNA WILLIAMS:
You have a fascination with Marc Segar, one of the first people in the UK to be diagnosed with Asperger’s. Marc was a man with great interest in and compassion for others. Is this what you relate to in him?
JOHN:
I’m not so sure it’s a fascination entirely with Marc himself. Marc’s work was one of the catalysts for me finally “getting” the non-autistic world. At the time I was trying to figure it out, there was nothing else on the entire internet or on bookshelves that even tried to explain the non-autistic world to us. In fact, NOBODY else is studying the non-autistic world in any serious way.
DONNA WILLIAMS:
Certainly those on the spectrum are busier studying themselves than the non-autistic world, sure. I think that’s why I buzz at the blog. It’s where I dispel my angst about the world in general.
JOHN:
I went and bought Tony Attwoods “a complete guide to asperger syndrome” and it has NOTHING that explains how we’re supposed to deal with this world. It’s written
for people who DON’T have asperger syndrome. Wouldn’t one think that that’s an “incomplete guide”?
With Marc’s work I guess part of it is that I’d like to figure out a bit of what Marc was thinking for technical reasons. I finished reading his survival guide and then I read his biography, and learnt even more. Marc clearly had a lot more to tell, but as he said, he couldn’t find a way to write it down clearly enough to put in his book. I think he probably had detailed notes, but they’re nowhere to be found and there is remarkably little information about him anywhere.
I think he probably faced the same issues as I did, but he attacked his social problems much earlier, before developing his self esteem. As a child I wasn’t diagnosed with an ASD but I was put in “a home for disturbed children” as you described it, and what they did there could be described as ABA. I succeeded in defeating every effort to make me conform by analysing them and they kicked me out, whereupon I went to the library to read books and eventually to take up a “computer hobbyist” passion that has served well.
DONNA WILLIAMS:
Ah such wonderful things are salvaged from the rubbish dumps of life 😉
JOHN:
As a person I think Marc and I probably had the same basic passions but I believe he pursued one of them too far and it killed him. I’d love to be able to discuss merrits,
dangers and different strategies of pursuing this particular interest because I’m wary of going on at this point. And because I can’t find a friend who likes
social events. 🙂
DONNA WILLIAMS:
Yes, sadly I’m too solitary for much in the way of social events and the language processing disorder means I can’t understand spoken language fluently which makes me a great spy but in terms of social dialogue I’m far better with typing.
If Marc was here, what would you say to him today, what do you think he’d have made of the internet forums and Autism Communities?
JOHN:
I think he’d be shocked but not surprised at the way “social skills training” eventually worked out as a treatment for asperger syndrome. They eventually realised that none of the kids who completed these classes actually enjoyed socialising the non-autistic way even though they then could. I don’t know exactly what happened to them but from experience, some may have ended up being manipulative, suicidal or even more withdrawn.
Marc Segar has been cited as an example of what happens to autie kids who are prevented from pursuing their passions and as an example to those who would try getting too involved in the non-autistic world.
I don’t know what I could have told him given that he willingly gave up pursuing his “typically aspie” interests with any gusto. You mentioned he was interested in clowning, and from there, it’s probably an easy transition to stand-up comedy which I think is at least half full of sociable aspies, so I would have recommended he try that.
DONNA WILLIAMS:
These days with autism arts expos finally starting (we have one in Adelaide in Oct this year) he’d have had an autism friendly audience. One day auties may better support things like the current dinner clubs starting up and maybe evolve to things like autism friendly performance venues and opportunities. There’s so many auties interested in arts, music, dance, film, comedy and many of them doing these things now. Sure, most are still overprotected from the non-autistic world so not ‘out there’. I hope that as families realise their adult children can be in autism friendly social groups, they’ll loosen up and support their children being more ‘out there’.
JOHN:
I suspect that Marc didn’t realise that many of the non-autistic social rules can be dropped in autie social circles and new ones created. I’m having a great deal of fun pursuing this idea right now and I think Marc would have too.
The internet forums might have prompted him to think about these things because of course, these are places where passionate fights regularly break out for often no reason at all. There are often no social rules at all or the forum administrators get personally involved in fights or people misinterpret where each other are coming from or manipulative people come looking for people to bully.
DONNA WILLIAMS: so true and I’m hearing from too many ‘angry young men’ who have been booted out from the forums because they didn’t toe the party line and the frightening thing for me is that these guys may already have experienced isolation all their lives and can then identify with some pretty dangerous loners. The forums need to get less precious about their ‘one voice’ and accept that the experience of ASD is really diverse, some love their ASD, others struggle with it AND the world.
JOHN:
On the other hand, there is plenty of room for a kind word here and there. I’ve often used his rule “questions are often a much more powerful form of defence than statements” to defuse even the worst arguments on the internet. I think the forums might be a much better place had he been active on them.
DONNA WILLIAMS:
Nice idea.
You have a fascination in the division between ASD social skills versus non-autistic ones and the clashes between them.
Would you explain some of that?
JOHN:
Unlike Marc I had problems talking with autistic spectrum people as well as non-autistic. A lot of that was due to bipolar mood issues, but I’d also picked up some non-autistic behaviours that were freaking autistic spectrum people out, and I’m still lint picking them now. At this point, I have divided my social skills into three groups. One set for autistic spectrum people, one for non-autistic and one for everybody. The “everybody” group being rules reguarding destructive behaviour.
I can usually spot autistic spectrum people by the fact that I’m making the same assumptions about them that non-autistic people do when I’m seeing them through my understanding of non-autistic people. These communication problems mostly go away when I switch that understanding off and just talk with them or listen to them.
Other mistakes I had to acknowledge and drop with autistic spectrum people include complimenting them personally instead of complimenting their achievements, not giving them enough time to respond in conversation, interrupting when they’re speaking and in finding the incorrect balance between being too protective and not protective enough.
The same thing keeps happening to me with a lot of other autistic spectrum people who have been taught non-autistic social skills and who will tend to make inaccurate non-autistic judgements about me.
DONNA WILLIAMS:
I think we all have to accept none of us are perfect at any form of social skills nor are we meant to be. That’s why we’re humans, not mythical characters with some non-existant perfection in social skills. Even the most socially accepted person will find somewhere they will utterly fail. That’s part of diversity and complexity.
JOHN:
In many respects, the social groups are a lot like the autistic community forums in that they don’t have the “invented social rules” that other geek / nerd groups do, and they suffer for it because of the conflict. Face to face groups suffer conflict in silence, but internet groups suffer open conflict. It makes me wonder exactly what the cause is. Other groups tend to have much more controlled conflict, if any.
Maybe it’s the lack of a common interest from which invented rules can sprout, and that raises the question of what exactly do autistic spectrum people mean by “socialise” and “autism advocacy”? Perhaps we should be talking about these things and staying out of each others hair when there’s no consensus.
What scares me most is that it’s so easy to destroy a persons entire socialising experience by not quite being able to figure out what to do and not do quickly enough, because autistic spectrum people tend to relive bad situations and can be very unforgiving. I’m still somewhat gun-shy of all my failed socialising experiences and it’s difficult to “open up” through the eyes of my new understanding.
DONNA WILLIAMS:
I’ve talked about identifying strongly with the Aussie term ‘dag’, which relates to being oblivious to fashion (and generally social klutz’s), combined with being an idiosyncratic, eccentric, affable fool and best captured by characters like Norman Gunston and, more recently perhaps in shows like Ugly Betty. I certainly identify as strongly with ‘dag’ as with ‘autie’ and ‘artist’.
The term ‘dag’ is sharply contrasted with another Australian term ‘bogan’ which relates to being slovenly, lazy, loud mouthed, uncouth and antisocial… the archetype of the Australian ‘yobbo’ and perhaps captured best in the Australian comedy like Kath and Kim or UKs Harry Enfield’s teenage character ‘Kevin’, but there are many who confuse the dag and bogan archetypes.
Whilst dags are rarely offensive, they can be so oblivious to social norms they end up excluded and there’s certainly quite an overlap with autism and the dag stereotype. Bogans, on the other hand, are associated with bravado and obscenity and are often found offensive. Do you think there are people with autism who don’t simply lack social skills but have NO REGARD for them and flaunt that disregard in antisocial ways?
JOHN:
You mentioned in a recent blog posting that “dag is to bogan what nerd is to geek” and that “if a bogan is a geek without a computer, then a dag is a nerd without a computer”. I’m not so sure that computers are even important in that picture. The only time I ever met someone I would call a bogan was just after I had landed in Australia and been sentenced to primary school. She was one of my classmates and she wore fluffy slippers to school. The only other bogan I’ve ever heard of was a caricature of one by Magda Szubanski.
There are a hell of a lot of other words for autistic and manipulative people in popular use. Emo, wierdo, nutter, freak, psycho and the great catch-all, “crazies”. I’ve heard non-autistic people use all these words, often interchangably in reguards to autistic spectrum, anti-social and manipulative people. Anybody they can’t quite work out in fact. It’s as if they can’t actually work out the difference so they just assume the worst.
I’ve certainly noticed a bit of anti-social behaviour in the relationship between geeks and nerds for as long as I’ve known of them. A lot of the time geeks in my
social circles would be more socially adept than the nerds and they’d certainly be more agressive. It never used to bother me because I’d just avoid socialising
and my antisocial behaviours only ever came out when being forced to socialise.
I’ve also heard it said that “a nerd is capable of things that a geek wishes they were” and I suspect that it’s because the geeks were all sinking a load of energy into learning social skills. You can’t learn social skills without people to learn from and test them on and I reckon that’s what half the bullying is about.
You’ll be glad to know that the bullying nerds got from geeks wasn’t half as bad as we’d both get from other people though, and although I’ve only ever met that one bogan, I suspect that the relationship between dags and bogans is the same as the relationship between nerds and geeks.
I saw a documentary on Catalyst called “Corporate Psychopaths” once and the profile they gave of psychopaths sounded hauntingly similar to the profile of asperger
syndrome. From memory, there were two differences. Where aspies (often) lack fear circuits in the brain, psychopaths lack empathy circuits, and where aspies have
narrow intense interests, psychopaths have “superficial social skills” but little desire to socialise. Only to manipulate people for personal gain.
Now about anti-social behaviour.. I often wonder about why I was always able to “get” many anti-social, manipulative people more than non-autistic people. In
short, I suspect that they were born aspies and gained a technical understanding of how non-autistic people work as their “narrow intense interest”. And I suspect
that the brain damage to the limbic system comes as a side effect of purposely ignoring the ethical issues that come from socialising the non-autistic way.
Marc Segar wrote “I now explain negative human behaviour in terms of survival of the fittest.” This is how manipulative people describe the world too, and my
understanding is that what drives ALL non-autistic behaviour is the human version of Darwins Sexual Selection.
Now that I look at this, I see our definitions
apply to different groups of people. I’ll have to think about that.
This is one big reason I avoid getting too involved in the non-autistic world right now. I understand that they really REALLY enjoy socialising, assume we do too and keep trying to just get us more involved. But to me they’re just a very intriguing problem and I’m only learning little refining things at this point. Not enough to make the effort worthwhile. What might I end up doing to make the effort worthwhile? What might I end up doing to put myself in a learning situation?
DONNA WILLIAMS:
To enjoy socialising there’s all kinds of factors. If one enjoys power over others, adventure, admiration, attention, one upmanship, duties and responsibilities, achievement, acceptance, being taken care of or helping others, there’s a slot, sure. Most people have a few of these motivations. I’m lacking most of them except the helping people one. So I have naturally low motivation to socialise, or I’m socially ambivalent. As soon as I don’t feel helpful, I end up restless and socially awkard. Some people with ASD don’t even have one of these. If people get into sensory patterns, characterisations, systems, I find something relatable, but the ‘helper’ is my social default setting. So I think having some collectives of personality traits make non-autistic socialising easy and other collectives make autistic or Aspie socialising easy. I’ve really struggled with the Aspie socialising thing because I’m so much more into patterns, nature, making sounds, movement… the buzz junkie things… and that has annoyed ‘cerebral’ Aspies. But thing is I don’t EXPECT to fit in everywhere. I do HOPE for tolerance though.
JOHN:
One of the things I noticed watching Big Brother Australia is that they often put eccentric contestants on who have autistic traits to “stir things up”. Often they obey the social rules perfectly but they always come undone because people don’t see them “opening up” and other people think they’re hiding behind their “quirkiness” or just being creepy.
What’s really happening with the creepiness is that any autistic spectrum person who knows how to socialise still has to think about socialising manually and that gives them pauses in their speach at the very least, making people think they’re calculating. It makes me wonder what the point of learning social skills is at all if we’re going to get caught out by simple things like this.
Now, the reason we CAN’T tell non-autistic people to just accept THAT is because the part of their brains that does that is actually doing a useful job. It’s actually weeding out the manipulative anti-social people.
DONNA WILLIAMS:
The subject of substance abuse and the autism spectrum is quite a hot potato but I have known and worked with many on the spectrum for whom substance abuse is quite an issue. Co-occurring psychiatric challenges, including depression, bipolar and anxiety disorders are common on the spectrum and many people on the spectrum are avoidant of the ‘uncool’ image of being prescribed psychiatric medication but others see it as defeat or acceptance that some aspect of their ‘autism’ package needs treatment or management and culturally they can’t handle that. I’m someone with a mood, anxiety and compulsive disorder who chooses prescription medication to manage this. I don’t see myself as uncool or selling out for facing up to this and I had two parents who were substance abuses and also on medication for mood disorders. How do you see the dynamics of substance abuse, ASD and possible co-occurring psychiatric issues in people on the spectrum?
JOHN:
Well, I started noticing serious mood problems as a teenager and I can trace them back to the single digit years. My manic depression problem was well and truly developed by age 26 when I last attempted suicide and finally lost my last job. It was a year later that I took up smoking and about another five years after that, drinking. A few years after THAT I figured out I was a manic depressive, but I did notice a slight improvement in life in general after taking up both these addictions.
What has kept my mood disorder under control all these years is noticing it in the teen years. I always had this thing where I had to be responsible for my own wellbeing (I felt nobody else was capable) and by doing “reality checks” every time something changed and keeping control of the ups, the downs weren’t so bad. I realised that stress was one of the big factors in the mood swings and looking back, not being able to turn it off was the big factor in all my suicide attempts.
When I found out about manic depression, I made an effort to switch the reality check mental trick off to see what happens and it was a matter of weeks before I almost lost control in a major manic episode so the trick ain’t half bad. They now know that anti-depressants and anti-psychotics BOTH make the manic depression problem worse, and I’m truly thankful for not being diagnosed and medicated as a child, but I ALWAYS do these reality checks and turn the stress off when the signs appear now.
DONNA WILLIAMS:
Its generally agreed that anti-depressants can make bipolar worse, sure, but the new atypical antipsychotics are used as mood levellers in bipolar. Sure they won’t always be compatible with all people with bipolar, but in my case they’ve made my life much more stable, fuller, manageable. Both of my parents were on mood medication in the 1970s and I don’t think it did either of them any good but who knows who they’d have been on nothing.
JOHN:
Psychiatric issues don’t “get better” either. If it ever becomes unmanagable, I’m going to get help and other people should too.
On a different note, I got into a Youtube discussion a while back with pro-cure advocates about curing the biomedical co-morbidities of autism in children and then considering them cured. They don’t realise that even in the healthiest “asperger kids”, the actual stress of social interaction can lead to depression, bipolar and anxiety disorders amongst other health problems.
DONNA WILLIAMS:
Maybe so with that group, but with some people with autism who have had severe gut/immune/metabolic disorders (as in my case), co-morbidities can be set off by imbalances in brain chemistry when undigested foods and toxins cross an inflamed blood brain barrier in an inflammatory and allergic state, so there is really a world of difference there and we have to distinguish between the two groups.
JOHN: This is the way the youtube discussion developed as well. I don’t think anybody anywhere believes that the “biomedical” issues often associated with autism should be ignored. If there are actual health issues, they need to be treated. However, the anti-cure crowd are largely up in arms about people changing their personalities and for them the term “autism” is the communication aspect.
“Curing” these issues is a poor second best to preventing them in the first place, and that can only be done by getting non-autistic people to just accept us for who we are and perhaps offer help with issues they see rather than ignoring us or intimidating us into submission. This in turn can only be done if the word “autism” isn’t defined by all its curable co-morbidities.
DONNA WILLIAMS:
In my case I was assessed as psychotic at age 2. At that time I had severe ‘mood fits’ in which I’d laugh hysterically till I couldn’t breath, bash myself in terror and rage and run in fast circles in mania and acute agitation. I had a coughing tic so severe and chronic I was coughing up blood. I appeared deaf and had no response to pain. So clearly, we can’t blame all that on society. My father had episodes of acute manic psychosis, believing himself at times to be Jesus or Elvis and other times he was highly dangerous. My mother had acute challenges with depression, impulse control and rage. Bipolar effects many of my relatives, so does social phobia and some have OCD and another has Tourette’s tics. Around 30% have gut disorders. So clearly we need to acknowlege there is a big mix in the spectrum and some really do have physiological issues well beyond just social impact. As a consultant I’ve seen kids like I was, aged 18 months in loving families, who are severely self injurious, riddled with tourette’s tics, stuck in hideous OCD rituals that are clearly distressing and disturbing to them. When questioned the parents often have family history of mood, anxiety and compulsive disorders. I can’t call that social impact. But I totally feel another group exists where the co-morbid stuff is PRIMARILY socially based, yes. But neither group should define the other. One shared word – Autism – doesn’t mean everything under that word and its workings is the same for all.
JOHN:
I agree. This is how the debate largely ended. A lot of people don’t realise that asperger syndrome isn’t all genius and success. Many are trying to “cure” autistic kids by turning them into “asperger kids”, but there are serious social and emotional adjustment issues that their “biomedically cured” child will have to face in the future.
I’ve come to realise that the world with all its conflict and pain is largely an already perfectly satisfactory game for non-autistic people and they ALWAYS assume
that everybody else is on that wavelength too. One only has to watch drama shows to see that. Any “solution” which doesn’t involve talking non-autistic people out
of this thinking is doomed to failure. I notice that Tony Attwood is talking in these terms these days too.
DONNA WILLIAMS:
Aiaiaia.
John, you’re unable to manage employment due to health issues but many people with ASD also struggle to get or hold employment. How do you think employment could be more autism friendly? How do you think people on the spectrum can think postively of their lives in the absence of structure and occupation?
JOHN:
Business has had to work a lot of these details out in IT and R&D workplaces in recent decades. It seems that people on the autistic spectrum have been filling these places up and the workplaces end up hurting them enough to make the best ones move on, causing a lack of competitive edge in the companies in question. If you wanted to answer most of the first question you could simply take a look around the new workplaces designed to address these issues.
However, those workplaces are designed for passionate workers and not everyone on the spectrum is passionate about their work.
There’s a hell of a lot of potential in the “work from home” sphere yet to be fulfilled. Particularly in office jobs. Technology is at the point where just about all jobs not involving face to face or physical contact can be broken into tasks that can be sent to different people with the right broadband, software and in some cases, hardware.
A dollar value could be attached to each particular task being completed correctly and if the “virtual office” is large enough, people have more leighway to decide when they work. If an employee looses the trust of the boss, that goes on their record and they lose work, and when work dries up, so do employee costs. If an employer wants an employee to be “on duty” and accept certain tasks, they would create a task specifying that they do that.
Now, who would create such a system? An in-house development team or third party temp agency perhaps? That would permit employees to be employed by only one employer at a time. The way I see it, there would have to be multiple virtual employment agencies to vette employees for employers.
These agencies would be registries of potential employees for employers to browse through, perhaps interview online if they don’t trust the employment agencies interview, and click “hire”. The employment agencies would distinguish themselves on how well they vette their employees, and charge accordingly.
Employers can hire as many people as they want if they’re paying the employee by task, but if they hire too many, some will forget their jobs in between them. Employees can sign up to many employers at once to get more regular tasks, but if they sign up to too many, they’ll also perform certain jobs too irregularly to know them properly. The system would have to keep track of this and ask both employer and employee if they want to continue employment.
It’s at this point that the computer based training system would step in and train the employee in their new tasks (if any) that the employer has created. This will be a paid task of course since there’ll already be multiple independant public libraries of courses that a potential employee can browse through and take at their leisure. And a system to test the employees competence at their chosen task. The results would then go on the employees record at the employment agencies.
Someone would also have to vette employers for employees to make sure their wages get paid. This could potentially be the employment agencies but it would require employers and employees to be signed up to a large number of agencies to reach the broadest possible market. This means there needs to be separate independant collection agencies. A single entity can perform any number of functions if they want, but they don’t have to.
There’s also the problem of breaking jobs down into tasks. Many “production line” jobs are simple enough for this to be done once, and many one off jobs can be broken down manually by an employer, however, there are many “fixed quantity” jobs that would probably require professional job-breaker-downers to create. Fortunately the infrastructure is already there for such people to be at hand at all times of the day.
There’s also the issue of the cost of any particular task at any given time. Employers and job-breaker-downers could set this manually, however, in the spirit of the free market, an independant stock market system is in order. Tasks could go into a market where employees “buy” them, given certain constraints the employer sets.
Different employees will have differing skill levels with different tasks though, meaning that each employee and employer will get a different dollar value out of any particular “sale”. The software client should be able to account for this and present employees with a list of their most worthwhile tasks. If a task turns out to be too complex for the employee, it can be sold again. If it turns out to be too complex for most employees it will bounce around for a while until the employers constraints force the price up.
Now, all of this has to be integratable with all office devices that an employer might need an employee to work with. Phones, computers, networks, software, water coolers, coffee pots, vending machines, executive toys, all sorts of electronic equipment. The list is endless, and companies would spring up overnight to do this. Notably, paper handling devices are off this list, as the paperless office will finally have arrived..!
Employees can also be employers by outsourcing their jobs of course, and this means that the software client has to be flexible enough to work for both employers and employees. People who do such things might have difficulty competing with job-breaker-downers who do their jobs too well though.
By integrating myspace-style geo-location, this system could even be extended as a customer interface. Imagine being able to find and hire local producers to home deliver all sorts of arcane products for you. People wouldn’t even need to set up a business. Grandparents and backyard farmers will be selling their services to the community around them.
Who else could create, and be trusted to create and deploy such a system but the free / open source software community?
I’ve spared you the details of a jobs-market crash. These things are likely to be ugly. Non-existant dollars exploding out of empty offices onto just as empty streets. Doesn’t get much worse than that.
DONNA WILLIAMS:
Nice rant 😉 There’s quite a polician in there John.
JOHN:
As for the second question.. It’s easy to spend ones time as an autistic spectrum person building self esteem and marketable skills by just sitting down and playing with stuff you like. Me, I’ve spent much of my time learning computers to the accompaniment of music playing in the background. I’ve also applied my mind to finding easier and better ways to live and these days I’m getting into making Youtube video’s. I’m always looking for new stuff to do though. I might take up creative writing. 😉
DONNA WILLIAMS:
I hope you do. If you read my film scripts you’d see its a great place to work creatively with existential angst 😉
John, just to finish up, you have a project happening to do with the work of Marc Segar.
Where can people visit to find more information about this?
JOHN:
Ah, I’m contributing to a book called “A survival guide for people on the autistic spectrum”. The book can be considered “published” at this point, but it’s nearing the end of “development”. It’s meant to be a continuation of Marc’s original book but it talks about slightly different things. Being a wikibook, everybody’s welcome to come along and add to it.
I’m also in the process of creating a blog. It’s probably going to be on myspace and youtube.
http://en.wikibooks.org/wiki/A_survival_guide_for_people_on_the_autistic_spectrum
http://www.myspace.com/creddyeddy
http://www.youtube.com/CreddyEddy
DONNA WILLIAMS:
thanks so much for your time.
JOHN:
Thanks Donna.
Really enjoyed that Donna.. Though it was more like a conversation between like minded individuals, than an interview.
I really liked that though..
You both opened up and shared your innermost feelings.
You were basically bearing your soul..
And I was thinking…. If only there were more honest forthright and decent people .. like yourself, in this world, maybe we wouldn’t have any wars..
You may have a supposed IQ of 70, but, I have to tell you, I think that you are one hell of a talented and Intelligent lady..
As John says IQ’s don’t necessarily mean anything..
You know what makes me laugh Donna..? The fact that it is said that 70% of autistic people have some form of mental retardation (low IQ).
I’ve never really been able to understand how such an assertion could be made.
Take Amanda Baggs for instance.. Many would term her low functioning, as she lacks speech.. But she is as smart as a whip.. I have read many of her posts and comments.
She is a very articulate and intelligent lady..
Non autistic people judge autistic people by their own standards, instead of accepting them for who they are.
PS Thanks for going to so much trouble to send your paintings over to me. Only sorry it turned out to be such a nuisance for you!
Hi Kathy, my IQ (tested in my 20s) thingy went like this. Apparently I was in the genius range for some skills, way down the other end with others, ended up broke even at just under 70. I had a rather endless rote memory, which was apparently well beyond what most non-autistic people can do. So I guess rather technically in the traditional ‘idiot savant’ pattern though many folks these days feel they are savants just because they are exceptional at something. My father’s old work colleague knew me since I was 3 and before I understood autism he said I was ‘a funny sort of retarded genius’. I wasn’t offended, just seemed descriptive to me. And besides it was his opinion. I don’t find the word ‘retarded’ offensive as long as nobody says that’s ALL that I am. And its so hard to tell what retarded is anyway. Is it perceptually losing one side of one’s body? Is it being meaning blind? Is it lacking conscious thought or conscious sequencing skills?  Is it struggling to hold meaning in words heard or read? And ‘retarded’ says nothing of emotional intelligence. I could be missing a mass of cognitive functions but all the lights on in the emotional intelligence department. Then would I still be ‘retarded’ or just in some ways, and aren’t we all?
I think all my weaknesses formed my strengths and I’m not complaining. So the test did pick up my strengths (rote memory, pattern memory and spatial abilities), just it also picked up my weaknesses (visual and auditory processing, language processing and sequencing). I asked Dr Bartak, how do you know I’m not just crazy. He said because crazy people don’t test like you do. He told me I could do things non-autistic people couldn’t do. But I see many things autistic people can do that I can’t and many things I wouldn’t want to do either.
I do relate to all people though. When you feel people, you see past their systems and mindsets and knots. We are all wonderfully flawed and equal.
Don’t know if people were like me that we’d make a better world. I’d want people to be tickled often and never forget to belly laugh not AT anyone, just at themselves. It might not be a better world but we’d maybe be happier.
and it was no nuisance re sending the paintings. It was quite an adventure and Chris helped and we ended up going bush walking in a new wonderful place on the way back. Lots of mud with wonderful patterns in it, and a nice creek.
:-) Donna Williams *)
As I understood it the time it was not known whether Mark had had
a panic attack which resulted in his death, or whether he had actually killed
himself. It was stated at the time that the reason, if he had actually
killed himself was personal, and therefore I will not disclosure the
reason, as I am not sure how he would feel with people discussing
his personal life. It was however one that any young man of his age could
have found difficult to deal with whether one was on the spectrum or
not.
People describe Marcs death as “a tragic accident on the M1”, however the details are that he actually hopped the fence and took a walk into oncoming traffic. It’s hard to tell this apart from suicide.
He could have equally hopped the
fence in a panic attack. He could have hopped the fence for
any number of reasons. No one will ever know. Therefore it would equally have been
“a tragic accident”. I attended the same school as Marc
and I was in contact with staff at the school at the time of
Marcs death. I understood at that time that no one knew
for certain. I prefer to keep my memory of Marc as I knew
him and I am certain that his family would also.
I don’t think John’s point in the interview was to fixate on exactly how Marc died but that people with ASD have suffered depression, even committed suicide after seeming to develop a non-autistic facade.
I know Marc was isolated in many ways, stuck between worlds and identities as are many of those who put much of their hopes on learning to pass as a non-autistic version of ‘normal’. I think this is what was the essence here.
I have walked in front of oncoming cars and ran in front of them in panic attacks. I have low muscle tone and sometimes went up on car hoods but never hit the windscreens (thank goodness but have been a few inches from them). I would then just run off, often shouted at, sometimes grabbed and physically shaken by overwhelmed drivers scared out of their wits, often causing screeching and swerving (so I could have killed someone else with this rubbish).
I was told I had a ‘death wish’ but I didn’t consciously feel suicidal, just as if death was irrelevant or even casually welcome. My relationship to my body was not developed much. I didn’t identify self with having one. Also I’d been self injurious since infancy and used to attacking it. It was a real battle to care about it, think ahead, take action to avoid it being harmed etc.
Later I came to terms with this as part of Rapid Cycling Bipolar which had probably bee there since the ’emotional fits’ I had since age 3.
This was my story, not Marcs, but what happened to Marc could easily have been me. Certainly when stressed I was more likely to both walk in front and run in front of cars.
In my case it couldn’t be blamed on pre-meditated attempts at suicide. Nor could it clearly be differentiated from my autism as I’d done this since around age 8 (previously lived in a dead end street). Nor could it be solely blamed in my case on pressure to conform as I did this in MANY different mood states, some ‘lost’ and zoned out, others in euphoria and ‘bliss’, others in acute agitation and distress, some just blunted and others defiant, almost willing cars to hit me. I also did this before I really understood or consciously grasped my ‘difference’ from others (which was more around age 9-11)
Since medication for bipolar, I’ve done none of this in front of cars business.
I’m surprised I made it this far an around 15-20% of people with unmedicated bipolar kill or endanger themselves and die.
As I said, that’s my story, not Marcs. Ultimately only Marc can tell his, though his writings.
🙂 Donna *)
I’m sorry for being insensitive.
Marc is often held up as an example of what can happen to auties who get too involved in the non-autistic world. “Personal reasons” is now the third explanation I’ve heard for his death, and I’m happy to leave it at that but the thing is that there aren’t enough of Marcs writings to be able to tell what his story was. Still, telling totally isolated auties not to get involved in the world around them at all is a little silly.
From what I’m told about suicidal people, the ones who leave a suicide note are looking for help, and the ones who don’t, aren’t. They’re just out to make peace with the world and they do this by cleaning up their affairs before doing the act.
Marc might in fact have been having some sort of panic attack. From what little I’ve read of and from him, I think that he probably didn’t suffer from panic attacks, but I can’t tell, given what little information there is about him.
The thing that makes me wonder though is that he wrote down what he learnt, and not only that, but he wrote it down in a readable way. I have tried to write a book just like his using concepts I find easy to understand, and frankly it is near impossible to make it broadly readable.
I reckon Marc put a HELL of a lot of work into those small books and I suspect that when he read back over them and tried to “road test” them, he wondered what the effort was for. Now, add to this that he was no older than 23 when he learnt all he did.
Many people have said that they wished they’d had those books around when they were younger. There clearly is a need for such books because learning these things is near impossible even with the motivation to actually get involved.
There also clearly is a need to know exactly what kinds of problems someone on the spectrum is likely to be confronted with when they attempt these things. Social skills training is still used as a treatment for perfectly healthy aspies despite the news reports about how NONE of them work. Parents and carers are even willing to take their kids passions away from them to give them more time for social skills training.
In attempting to become more socially aware, I’ve encountered many different suicidal and antisocial feelings. If I didn’t have a passion to turn to when these feelings rise, my life probably would have ended the way Marcs did by now. On the other hand, my computing passion isn’t as “successful” as it has been for many other aspies so I’m still faced with a deficit in social interaction.
These things tend to get glossed over when people talk about treatments for aspergers. The antisocial and suicidal tendencies “get disappeared” in the reports and people aren’t willing to talk about personal experiences. Consequently, social skills training still exists and new ideas like RDI and Sonrise are often passed over.
There also clearly is a need to know exactly what kinds of problems someone on the spectrum is likely to be confronted with when they attempt these things. Social skills training is still used as a treatment for perfectly healthy aspies despite the news reports about how NONE of them work. Parents and carers are even willing to take their kids passions away from them to give them more time for social skills training.
*Hot tears well up in eyes* Don’t I know it…
To take someone’s passion, someone’s freedom away is probably one of the most destructive things you could do. No one who cared about being perceived as tolerant and compassionate would ever, ever advocate that for someone who was not autistic, or for themselves. Some experts even recommend forcing children to act like their peers, such as by dressing them in their clothes. Or breaking down their resistance to peer pressure.
The last time I checked, individuality and resistance to peer pressure was GOOD thing. They complain about peer pressure in non-auties and encourage it in Aspies. DOUBLE STANDARD!
Social skills training-B.S. Not if people like that are that I have to look forward to!
Well, there’s some aspects of social skills training I agree with. My eye contact you to be pretty sparing to say the least. I’d glance about once in 20 mins, other times I’d bore through people making them nervous. So neither were helpful to me.
Creeps cashed in on my avoidance, others feared I was a nutter. And I used to be so triggered into agression by friendly affection I’d accidentally slapped a few people and stomped on their toes. So these things made ME feel bad. I didn’t want to have such dysfunctional responses even if I CERTAINLY DONT WANT TO BE A CLONE. So I think there’s a middle ground without anyone getting too extremist on the issue.
Those who are just ‘a little odd’ are in a different situation to those so seriously lacking in social skills that society won’t trust them and will abuse them, so we need to remember that.
Fact is, if I slap strangers and stomp on their toes just because they touched me not knowing my reality, then if I really want my system I can handle the consequences of being manhandled, booted out or slapped back by those I’ve assaulted due to not having had the training to desensitise safely.
If I am so scared to look sexual predators in the eye that they find my avoidance enticing, then teaching me timed eye contact is a damned good thing. A stalker in a powerful position once used to be such a person, constantly intrigued by my oddity and using that for his own needs. Today I would no longer be such a play thing. Social skills have taught me that – non-autistic version of them in order to use them at least for social safety.
… Donna Williams *)
Donna, in many ways you’re talking about social rules regulating destructive behaviour, as opposed to rules regulating eccentric behaviour. I remember asking you once how a dag defines the difference and you said that dags are eccentric whereas bogans are attention seekers.
I tend to agree, but the line isn’t really that clear. For someone who wants to get involved in the non-autistic world for example, eccentric behaviour can be seen as embarassing and non-autistic people will often also feel embarassed by association with or out of sympathy for the eccentric person.
In reality, every social action has a destructive aspect to it, however minor, and in the example above, it’s possible to handle that aspect by “displaying” that you’re TRYING to be eccentric. Comedians use this trick all the time.
I’d love to know exactly how to define that line though. It turns out to be an extremely important question because the rules reguarding eccentric behaviour can often be dropped amongst auties and often amongst non-autistic people too.
My name is Emma Segar; I’m Marc’s sister. I’m posting this on a few forums where Marc is mentioned, to clear up any confusion around his life, his guide and his death. Please feel free to contact me if you have any questions about Marc and his work. My e-mail is purplepooka@blueyonder.co.uk
This has been a difficult thing for any of his family to come forward and talk about. Obviously it is upsetting for us, and I think we’ve also felt for some time that it wasn’t really necessary, or appropriate, to make public announcements about Marc on the internet. However, ten years on, finding Marc’s name in unexpected places all over the net, from blogs and autism forums to Hollywood film proposals, I’m beginning to realise that, whether we like it or not, public interest in Marc is now a fact, and I would rather put up the facts from our perspective and an e-mail address for questions than keep stumbling across guesses and speculations.
Marc’s death:
Marc’s death was a suicide, not a car accident. He drove out to the M1 in the middle of the night, parked at a services and walked onto the motorway. He was suffering from depression, but not panic attacks as has been suggested, and I believe that he was thinking clearly and knew what he was doing at the time. He had written a very brief note on his computer, which he hadn’t shown to anybody or left anywhere it could be accidentally found. It wasn’t a cry for help, just a confirmation of intent.
There was no one particular event that brought it on, but many contributing factors. We have been through the process of blaming his (mild) drug use, his difficulties in maintaining friendships, the stresses of his work, and of course we have blamed ourselves for not seeing it coming. I still believe that the greatest influence on his decision was the pressure that he put on himself to overcome the barriers of Asperger’s Syndrome, and his difficulty in putting those barriers into perspective with his many achievements.
Marc’s Guide:
The Guide itself wasn’t an enduring obsession but a passing interest, which he updated a few times and then dismissed as too incomplete to be useful. He began work on another guide to help with conversations, which was full of lists of band members, football teams, films and TV programmes, so that readers would know what NTs were talking about when they discussed these things. He gave this up when he realised how quickly it would become outdated, not to mention the enormity of the task of writing what was essentially a bluffer’s guide to everything.
His view of the non-autistic world, despite his wide experience, extensive research and personal disregard for the conventional, remained irredeemably cut and dried. I remember arguing with him about the first draft of the Guide. I thought it gave the impression that it was somehow wrong or bad to be autistic, and that he should include a passage to the effect that readers didn’t have to follow these rules if they didn’t want to – it was just background information to help them make a personal choice. He said that those who read it all had to live in this world, and the world wasn’t going to change, so there was no choice. I think he changed his mind later, after meeting more people with Asperger’s Syndrome, but he never quite made the leap of extending the validity of that choice to himself.
I wish that Aspies For Freedom and all of these blogs had been around then. There was really very little at the time in the way of information or organisations run by and for Aspies, and perhaps a group of that kind might have persuaded him that he could lead the life he wanted to without having to put himself in such intensely stressful situations. I believe that he would have had a lot to say on these forums, and the most difficult thing about posting this is to see him being talked about here, instead of seeing him talk here. Even those who knew him best can’t begin to speak for him, but I know he would have had a great deal to say.
Hi Emma, thanks for dropping by.
The man who is interviewed here suffers from depression as part of bipolar in his Asperger’s fruit salad. His interest in Marc as a comrade gives him some sense of purpose, not so much in a fixation on Marc as a means of feeling not alone in what he, himself, feels about the line between fitting in, selling out, managing and celebrating his own Asperger’s.
The interview was very interesting, and John is welcome to e-mail me if he wants to see more of Marc’s work or talk about him.
I didn’t realise you actually met Marc – when was that? I remember him talking to you on the phone about brain chemistry when he’d just finished his dissertation. He was playing it cool, as always, but I think he was quite excited to have spoken to you ;-).
I was volunteering in the autism field, around 1993, and became friends with Denise, who was also a friend of Marc’s. We met at Denise’s house. It was pretty buzzy because it was in the early days before many people with ASD had met up and before all the internet groups etc. Marc was also involved with helping out at autism support groups in Nth London.
Yes, Kith and Kids, which was for people with all learning difficulties and disabilities. We’d been going there as a family since the early 80s and Marc and I both volunteered there when we turned 16.