Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with people with autism to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that idea in your head for a bit
IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about people with autism as egocentric, in the sense of a toddler. And if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a person with autism, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forward from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that people who end up with autism, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe autism in a way is a social coordination disorder. There’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that people with autism often have difficulties with these systems, but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess, that isn’t quite right, that something is not quite right.
IM: So I am wondering about whether we should think about the idea of what I’m calling a kind of internal exponential trauma caused by the sensory and the neurological challenges of the brain of the person with autism.
IM: One of the reasons I am so keen on this idea is, this idea which I think a lot of us have who work with people with autism, is that somewhere inside that person is a, dare I say it, normal person and this is I think the experience of parents, the desperation that we hear from parents is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)
IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists, by academic psychiatrists in places like London and America and stuff like that, is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing, they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.
IM: Ok so I am just going to summarise. In autism my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that people with autism are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and could we have a, are we having possibly a traumatic encounter there, which is exponential because of the massive development that is taking place in the first year of life.
Linda Buchan: My name is Linda Buchan, I am a clinical psychologist and I’ve spent most of my working life asking people with autism what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have people with autism and people with dyspraxia and dyslexia and ADHD in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wrong. And to start to move back to things like refrigerator mother and prevention of autism, I think is not appropriate.
(Lots of applause)
IM: Should I respond?
IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted in that way. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is, I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our minds open about autism and I do not mean to cause any offence by, you know, saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years, so you know that is just my experience. I am worried that these people are being traumatised by something that is going on inside their minds, that’s all I’m trying to say to you, so thanks a lot (applause)
Kate Fox (KF): Thank you, excellent, OK I am going to encourage, just cos I often do stand up comedy and poetry, and let me paint a picture of you of the worst possible scenario in which you might do stand up comedy, … then imagine you have to come on as an autistic, about to be outing yourself as an autistic comedian, imagine your warm up man, imagine that happened right.
KF: I spent the first part of this talk thinking, oh my god, I’m a genetic mess, made of two species, mashed together in an uncomfortable way I’m not taking him as my warm up man on tour.
KF: And a really important point for Simon Baron Cohen et al., it is possible to say these really valuable things but also it functions also as a piece of writing as a piece of rhetoric and if you are speaking to autistic people in an audience you have to find another way of saying some sort of genetic mess, you just have to don’t you, otherwise it’s not going to work. Otherwise we won’t go on tour together Ian, and I know it’s actually what you want.
KF: And then I’ll end with a minute long poem. It’s international women’s day. Part of the reason I got diagnosed was realising that the lack of diagnosis in adult female autism is a massively feminist issue and I have got a jolly lovely feminist poem to finish with
I need a female bodyguard
Mainly to guard my body against me
And all those voices saying it is not as good as it could be.
She’d clap a hand over my mouth when I got into competitive self-deprecation
I look like I got dressed in the dark
Well I look like an uglier female Kenneth Clark
Well I look like the exhumed body of Janis Joplin, dressed in clothes, rejected as too cheap by Primark
She’d show Trinny and Susannah the changing room door
Tell Gok Wan his control pants are a bore
Black out the pages of Heat magazine
When they slag of Fearne Cotton for having a spot on her chin
Put my copies of, does my bum look big in this or am I just alive magazine into the bin
She’d clap her hands over my ears
When blokes were extolling the virtues of early period Britney Spears
She’d stop me watching Hollyoaks actors mating
Being so self-depilating
Looking in the mirror when my self-esteem is shrinking
She may even stop me binge thinking
Ignore the critics, guard your…
Ignore the critics and sometimes the psychiatrists (cheers from audience)
Guard your mental health (but also listen to them, always have a balance)
Be a bodyguard for each other and yourself
Thank you very much for listening to me today, it’s been a privilege to be involved thank you