Was Janet Frame on the Autistic Spectrum?
Autism has featured in the mainstream news lately with a flurry of activity after the NZ Medical Journal of 12 October published an article by a New Zealand doctor working in Australia, proposing that Janet Frame had high-functioning autism (HFA). Rehabilitation physician Sarah Abrahamson of the Queen Elizabeth Centre in Ballarat analysed Janet Frame’s autobiographical writings alongside the latest revision of the 1994 DSM IV (the APA’s diagnostic bible) and concluded Janet Frame had HFA rather than the schizophrenia she was misdiagnosed with, and which was later revoked by psychiatrists in England. But unfortunately for Janet the incorrect diagnosis led to her incarceration in mental institutions and horrendous treatments such as unanaesthetised ECT. As we know she just escaped a pre-frontal leucotomy (commonly known as a lobotomy) by winning a literary prize in 1952.
Dr Abraham’s motivation for this research is to encourage ‘health professionals to consider a diagnosis of autism, rather than suggest purely a mood, psychotic, or personality disorder, in patients presenting with signs similar to Janet Frame’ A correct diagnosis should help them get appropriate support to participate in the community, not be separated from it. She decided on HFA rather than Asperger Syndrome (AS) because of Janet’s own indication that she had early language delay (the only real difference between HFA and AS).However, Janet Frame’s niece who has an adult child with classic autism, has taken exception to this suggestion. She says Sarah is wrong to make such a claim.
This controversy illustrates that the autistic spectrum is wide, growing and hard to define. It shows both the current fascination with autism and the high esteem in which Janet Frame is held. But it also reinforces my own theory of Janet Frame. In the year 2000 I wrote an essay (since lost) as part of my study for a Master of New Zealand Studies about whether Janet Frame had Asperger Syndrome rather than the schizophrenia she was misdiagnosed with in the 1940s. At the time, the fascinating and detailed authorised biography by Michael King had just been published, I had a newly diagnosed teenage son, and I had long been an admirer of the unique and creative way Janet Frame used the written word. For sources, as well as her autobiographical and fictional writings (a distinction often blurred by Janet), the Turnbull Library had an exhibition of her work containing video and audio sources.I discussed the AS theory with Michael King who indicated agreement but advised me not to publicise it at that time. At the Autism NZ conference that year I mentioned it to Tony Attwood. He said many people previously misdiagnosed with schizophrena were actually autistic. But now Janet and Michael are both dead so we cannot get their reaction to this current controversy.
I forget all the indicators of AS I found in the biography and writings but here are a few. As a child she wanted people to keep still while she told stories as she was distracted by movement (indicating the typical AS monochanelling). She was always regarded as ‘different’ and approached her academic and other work in original and unusual ways, and lived much of the time in her own world. She had a very good visual and auditory memory, was very sensitive to light and sound and describes an intense catatonic aural/visual sensory experience by the Clutha River. She tried in vain to soundproof her houses. She was very literal and when asked by a psychiatrist whether she heard voices she answered (of course), Yes. She was very logical and kept on at a job until it was finished. Writing and being a writer were her passion, but she had little interest in her books, sometimes not even keeping copies, once they were published. There are numerous examples of her doing the logical thing not the socially appropriate thing.She had few friends but developed a dependence on the young psychologist John Money to the extent she had suicidal ideation when he cancelled appointments. When he invited others to meet her she quietly turned her back on them until they had left (a logical coping method for something happening out of context). She had a variety of acquaintances who acted almost as her social interpreters, such as Frank Sargeson. She was a keen letter writer but preferred to write with green ink at odd angles across the page. She was an early adopter of IT technology. She hated interviews for their unpredictability and because they required her to converse and interact which made her anxious, rather than write. When she had enough of these dreaded interviews she politely said goodbye and left even if the interviewer hadn’t finished. She had a strong social conscience, and empathy with the state of humanity, but was often naïve about the intentions of others.Trying to cope with the expectations of others was extremely stressful for her. As a new teacher she ran out of her classroom when the inspectors were due and never returned because of the anxiety it caused.
No one uses the written language in quite the same way as Janet does. Temple Grandin talks of various types of autistic abilities: the visual (artists and engineers), the aural (musicians), those with an affinity for numbers (the mathematicians) and those whose special ability is with words (such as writers).
In Janet’s writing there are frequent descriptions which make sense from an Aspie point of view, such as the title: An Envoy from Mirror City. Her children’s book Mona Minim and the Smell of the Sun – another Aspie title – is about an ant finding herself in the wrong place. It also contains endless word plays on the word ant.
Since my initial research in 2000 two more sources have become available. A 2004 documentary called Wrestling with the Angel contains interviews with many of her friends and acquaintances including the last interview with Michael King. Although autism is not mentioned many describe behaviours that are highly suggestive of it.In this documentary Michael King also gives the historical context. He believed eccentric geniuses like Janet did not have a place in conformist mid century New Zealand where ‘normality’ was very circumscribed. When the lobotomy was suggested to her she was reassured that someone who previously had one was now ‘happily selling hats in Dunedin’. This vision of normality was horrifying for Janet who just wanted to be left alone to be a writer.
An exciting resource is her recently published autobiographical novel Towards Another Summer. This was written in 1963 but never published in her lifetime possibly because of the childhood she describes would be regarded today as abusive. But it is the insights into her life and mind which are fascinating. Living in London and with the schizophrenia label revoked she writes, ‘I was a certified lunatic in New Zealand. Go back? I was advised to sell hats for my salvation’. But her character Grace still feels alienated and puzzled by the human world, ‘for so long she felt not-human, yet had been unable to move towards an alternative species…’.So she becomes a migratory bird. It also contains the most brilliant insight into anxiety as she prepares for a weekend visit to the family of a journalist interested in her work (note it is also one sentence – yet another example of her inventiveness).
‘Now journeys were not simple matters for Grace; nothing is simple if your mind is a fetch-and-carry wanderer from sliced perilous outer world to secret safer inner world; if when night comes your thought creeps out like a furred animal concealed in the dark, to find, seize, and kill its food and drag it back to the secret house in the secret world, only to discover that the secret world has disappeared or has so enlarged that it’s a public nightmare; if then strange beasts walk upside down like flies on the ceiling; crimson wings flap, the curtains fly; a sad man wearing a blue waistcoat with green buttons sits in the centre of the room, crying because he has swallowed the mirror and it hurts and he burps in flashes of glass and light; if crakes move and cry; the world is flipped, unrolled down the vast marble stair; a stained threadbare carpet; the hollow silver dancing shoes; hunting-horns…
It’s no use saying Freud, Freud. People do, you know. Like squeezing a stale sponge.’ (p 13)
(Later she dismisses psychiatrists after meeting a young medical student ‘Harvey would make a good psychiatrist, although his face has not yet that certain expression which betrays the necessary constipation of feeling’) p. 31
Towards Another Summer reveals other common AS traits such as issues with linear time, coped with by being extremely early for appointments and public transport. She also refers to literal interpretation of words, for example being puzzled by the constant instruction in childhood to ‘pay’ attention.This is all very well but some like David Cohen in the Listener (10 November) have questioned the point of posthumous diagnosis. However, I agree with Sarah Abrahamson that there needs to be more understanding of autism by health professionals so people presenting with such traits are properly understood. Linking famous names to AS is one way to do this. It also helps to reframe the autism traits in positive terms when they are linked with famous people. They become special abilities not obsessions or abnormal interests. The special abilities of those on the spectum can be astounding and boundary pushing. We need to have a wider view of what constitutes creativity, humour, empathy, friendships. And accept this might go with a preference for one’s own company or different ways of ‘being’ in the world. And certainly broaden our view about what is ‘normal’.
Janet Frame clearly felt different from other people. She may have welcomed membership of the autism community, had she known about it. She may have: Michael King indicated her fascination with the autism of her grand-niece. There are rumours that she even had an official diagnosis.Whatever the real situation was, there is a powerful message in Janet Frame’s incredible life and writings about understanding, acceptance of diversity and inclusion.
Andrew wrote on November 8th, 2007 at 3:27 pm:
As far as the mainstream media go, I’ve been seething all day about an NZPA article today:
“No explanation for ’scary’ rise in autism”
http://www.stuff.co.nz/4266326a20475.html
You’d think in such an article there might be at least one statistic to state the degree of the “alarming rate”.
Lots of quotes from the Autism NZ Auckland manager, and totally irrelevent references to Rain Man. Here’s a fact according to the article:
“The increase was not explained by the population increase or another suggestion that it was now easier to diagnose.” - well I’ve certainly seen a very good argument put forth that recent rises are down to better and different diagnostic methods (Grinker has a very interesting book available in the Wellington library).
I’ve been quite happy with Autism NZ lately. The subsidised one on one swimming lessons have been simply fantastic. They should be sticking to their brief of supporting those on the spectrum not indulging in such alarmist rhetoric.
(probably not the right place to put this comment - is there a NZ based forum anywhere?)
Hilary wrote on November 8th, 2007 at 3:57 pm:
Hello Andrew
This is an NZ based forum on autism - so thanks for your comments. To be fair to Felicity, the manager of Autism NZ Auckland, she didn’t say anything about Rainman. All she said in the press release of 6 November (you can see it on www.scoop.co.nz) was that it was now more than 10 times more common than Downs and Cerebal Palsy and they want to provide more and better services. The Rainman and other implications are perhaps attributable to the journalist trying to get a better story. In NZ the diagnosis rate for autism, particularly at the higher functioning end, is going up, but there is no real research as to whether this is due to improved diagnostic tools or something else. But certainly recognition and understanding of ASD by health professionals has grown rapidly in the last 10 years. And getting back to Sarah Abrahamson’s NZMJ article on Janet Frame that is surely a good thing.
wobmia » Blog Archiv » WAS JANET FRAME ON THE AUTISTIC SPECTRUM? wrote on November 8th, 2007 at 6:12 pm:
[…] more here Der Beitrag wurde am Wednesday, den 7. November 2007 um 18:34 Uhr veröffentlicht und wurde […]
Sarah Abrahamson wrote on November 8th, 2007 at 11:29 pm:
Hi Hilary:
A great summary of the issues, especially from Towards the Summer. I read this recently: there are dozens of classic Aspie quotes: the most obvious “I have no social intuition”. I can’t think of a better one-line definition of AS/HFA than this!
My point in writing the article was to raise awareness that AS/HFA is not just in Rainman types, computer nerds, eccentric little boys and scientists but in all types of people, even those in “the arts”, as some have the idea that people with AS/HFA are less “artistic” (Simon Baron-Cohen seems to think this). I think, if anything, they are more artistic, if there is such a quality!
I feel any increase in diagnosis is due to the fact that 10 years ago AS/HFA did not really exist as a concept, and most health professionals were unable to make the diagnosis. However there have always been terms which have a large overlap with the concept of AS/HFA, if not exactly the same meaning: socially awkward, eccentric, geek, nerd etc. The concept of AS/HFA now allows us to use all of the information gathered from others with similar traits, rather than letting each person discover these facts for themselves, as Janet and her doctors were eventually able to do, allowing her to live in a way which was comfortable for her. Perhaps successful people with AS/HFA (and no other psychiatric diagnoses along the way) are those who have been able to accept their differences early in life, and can find a niche where they fit. They are not plagued by doubt and insecurity, so are less prone to the mood disorders which Janet suffered. For an example of this, I would recommend an Australian TV series (available from Dymocks on DVD) called “Nerds FC”. A group of young university nerds learn to play soccer. They have limited motor skills, special interests, and some seem to have significant social skills deficits. However they accept themselves as they are, and I’m sure they will be successful in their chosen suitable lifestyles! Interestingly, a similar series would not be made about women, as it would be unlikely that you would be able to find a group of women proud to be “nerds”!
Andrew wrote on November 9th, 2007 at 7:45 am:
hi Hillary,
Thanks for the pointer to the press release. I agree that most of my annoyance is due to the shoddy journalism rather than the Autism NZ manager. However, the article seems to be based around comments made outside of the press release. I assume the journalist attended the opening or spoke to Autism NZ otherwise where does the “scary thing” quote come from?
It really hammers home how careful people need to be when speaking to the press. What should be a very positive story (the opening of Autism House) has been twisted into something negative. I’m surprised the word “epidemic” wasn’t used to make it even more sensationalist.
lesley wrote on November 11th, 2007 at 3:08 pm:
That’s interesting about Janet Frame. Actually when i read her autobiography a while ago I also remember thinking that when she described quitting learning piano after being praised at a recital (if i remember correctly), it reminded me at the time of what Donna Williams describes exposure anxiety, which has much to do with too much attention being brought to one’s shifting and fragile experience of self.
I think, (although cannot find enough reading about, this may be a common facet of autism. There are many aspects of autistic experience that seem to take quite some time to make it into textbooks describing it and yet they play a significant role in many autist’s actual subjective experience. For that reason, I think it can be very useful to ruminate out loud about whether or not this or that deceased person may have been autistic. To merely rely on the DSM-IV-type avenues for an understanding seems to me a mistake. Someone mentioned Grinker’s book just before (Unstrange Minds), which gives a fascinating description of the making of the DSM-IV criteria for autism. It is so obviously not as black and white and discretely packaged as some people seem to believe.
lesley wrote on November 11th, 2007 at 3:13 pm:
PS I also was very disappointed by the newspaper article about the alarming increase in autism. It seemed the dismissal of the possibility that this could be to do with diagnostic methods was way too swift and unconsidered. Very annoying to see an unconstructive myth perpetuated. Not to mention the overall negative tone.
lesley wrote on November 11th, 2007 at 3:23 pm:
Actually I had another thought (excuse me) from my neophyte psychology-studying brain (just completed a first year paper so i am no expert) but found it interesting reading about one of symptoms of schizophrenia being loose associational thought, because I consider the ability/tendancy to make wild leaps of association, which is clearly evident in Janet Frame’s writing being a potential aspect of autistic thinking also, in perhaps a different way than in schizophrenia. In one of Michelle Dawson et al’s papers on Learning in Autism, they describe the process of the categorisation of thought being an automatic and involuntary process in non-autistic people, yet in autism this appears to be optional, that is it can be much more possible for an autistic person to link thoughts along more freely associational lines rather than have their thought bound by more mutually-recognised socially-normal patterns.
Robyn wrote on November 13th, 2007 at 9:06 am:
Very informative and thought provoking posts. I am always interested in learning more about the world of disability and impairment, and I love Janet Frame’s work.
However this site is really hard to read. Because it is grey on grey I had to cut and paste into Word before I could enlarge it enough to see it, and I certainly can’t read the instrustions relating to tags
Matthew Buchanan wrote on November 14th, 2007 at 4:35 pm:
Hi Robyn, point taken on the grey-on-grey, it could be more contrasty in places for the visually-impaired. Are you aware that your web browser can increase the font size right on the page though? Each browser does it in a slightly different manner: IE7 has an item called PageZoom, most others have a Text Size control in the menu somewhere, which will blow the text up in the browser if you’re having issues with it being too small.
Sarah Abrahamson wrote on November 30th, 2007 at 6:59 pm:
More about Janet Frame: thoughts about “Towards Another Summer”, a rather negative Listener article, and a medical journal letter commenting on this issue. It was suggested that we should leave Janet in peace and not talk about her in this way after she has gone, as this is not respectful and we did not know her personally. I say if she did not want her autobiographies analysed by the general population, including those with all sorts of qualifications and with personal ASD experience, why did she publish them? Why did she agree to such a detailed biography being written about her?
Perhaps she actually eventually saw herself as having AS/HFA, having heard about autism from her great niece’s diagnosis, and withheld publishing “Towards Another Summer” as she knew that it clearly describes the internal mental state of someone with AS/HFA. It is unlikely she would have been comfortable with the publicity she would have received if she had announced herself as having AS/HFA, as we know she did not like publicity. However, perhaps she saw this as a puzzle to be solved by her readers and family after she had gone. I wonder if she wrote anything saying she felt she did, or did not, have an ASD. If she did, and it said she did not feel that she did, surely we would have heard of this by now from her neice.
Has anyone else read this book to comment?
Daniel Bailey wrote on December 3rd, 2007 at 2:37 pm:
Interesting conversation to have without actually meeting someone. My older sister is the only person I know who is diagnosed as being autistic and she does not use English to communicate, so while I was exposed to Autism while growing up I can’t say I know how an Autistic person places themself in the world - however it strikes me from my limited experience that the further into the scale of Autism one goes the further removed from communication outside world they get yet Janet Frame has offered some of the more elaborately structured communication of feelings and thoughts one may encounter.
Is it truly possible to understand a person by viewing what is essentially their art? How many people would be willing to share the thoughts and fantasies they entertained while going through tough times - and if you did, do you think complete strangers would have sufficient information (or any right) to tell the world what kind of person you are?
Enjoy the fact that her work is here to be enjoyed, as that what was offered. As far as everyone here should be concerned, she is a mysterious talented author who offered her creations for the rest of us to enjoy - perhaps just leave it at that…
Sarah Abrahamson wrote on December 4th, 2007 at 10:53 pm:
Maybe: but as someone who has now spent hundreds of hours learning about ASDs, I don’t think it is so mysterious! The thing with ASDs is that communication with pure written language is often seen by the person to represent their true, best self, as Janet describes in Towards Another Summer: verbal communication may be haphazard and varies greatly with the skills needed and learnt in each situation. Her autobiography is also not so much art, but a stated true account of her life, told much more fluently than if she had attempted to convey this information verbally. Remember the key issue in high-functioning autism is not a complete lack of communication, but difficulty with verbal social communication. Giving formal speeches or performances is often unaffected, and written communication often excellent. Donna Williams is a case in point of this difference: she writes as well as Janet Frame, I think, but writes formally about the experience of having an ASD, and has difficulty with verbal social communication. Her life is remarkably similar in many ways to Janet Frame’s. Another example is the classic “computer nerd” picture: someone who is happy to talk online and by email but not so much in person, typical of an ASD. According to her niece in the book review for Towards Another Summer, Janet was one of the first computer nerds in NZ!
Remember also that the vast majority of adults with ASDs do not yet have a diagnosis: if we look only at those with a diagnosis to compare we see mainly the most severe end of the spectrum, or those who are lucky enough to be diagnosed by, for example, having a relative who is a psychologist.
Thankyou Daniel, for disagreeing politely with me without insults! For some reason those who have disagreed with this article have felt that normal manners do not apply: it is great to see there is someone who can do so rationally, and of course you are quite entitled to your opinion. People seem to have forgotten the idea of rational scientific debate relating to this issue: perhaps having an Arts PhD does not encourage such debate as strongly as medicine!
John wrote on April 14th, 2008 at 1:52 pm:
Andrew asked for a forum site:
Under 16 = www.withyoueverystepoftheway.com
Over 16 = www.asplanet.info (christchurch-based)
Thanks
Caroline wrote on May 19th, 2008 at 7:14 pm:
I just read this page and found it very helpful. Thank you. I believe that many people ( I think I may be one of them) are being diagnosed with a battery of mental health issues when they may have AS. The importance of this if not in the name, but learning effective ways to address the condition and improve quality of life. Realising that prominent people also have this condition, is helpful to both those with the condition and the general public (as shown by the tv ads about depression)
Sarah Abrahamson wrote on June 1st, 2008 at 7:57 pm:
Hi Caroline:
I’m glad this debate is interesting and maybe helpful to you. I also feel that many other mental health issues, while not necessarily fitting into the strict categories of autism and aspergers, are closely related and should be considered at least partly developmental disabilities: we have a very narrow view of developmental disabilties now, I feel: limited mainly to the intellectually handicapped and some people with autism and ADD.