How should Alice in Wonderland syndrome be diagnosed? And how should it be treated? For numerous other medical conditions, diagnostic criteria are available from scientific organisations such as the World Health Organisation , the American Psychiatric Association , the International League Against Epilepsy and so on. In addition, these organisations may issue evidence-based guidelines which stipulate how disorders should preferably be treated. However, for Alice in Wonderland syndrome, no such diagnostic criteria and therapeutic algorithms are available. As you probably have guessed, that is because the syndrome has until now hardly been investigated. As a consequence, Alice in Wonderland syndrome is perhaps the poster child for orphan disease s: a condition ‘forgotten’ by the powers that be and, therefore, playing no role whatsoever in the canon of medicine.
It is still a mystery what happened to Todd’s own involvement with Alice in Wonderland syndrome once his paper had been published. Did he go on to research his newly designed syndrome? Did he start lobbying or campaigning to give it wider recognition? Did he attempt to define diagnostic criteria or therapeutic algorithms himself? At High Royds Hospital , where he had accepted a position as a consultant psychiatrist by the time his paper appeared in print, he must have gone on to diagnose the syndrome in his patients whenever he saw fit, even in the absence of formal diagnostic criteria. Based on the little that we know about him, I do not believe that Todd was the kind of man who would have let himself be held back by ‘trivialities’ such as a lack of criteria issued by some official committee. However, after his publication of the Alice-in-Wonderland paper, there is virtually nothing more to be found on the topic.
However, there is one additional publication, written by an anonymous author, which appeared a full year after Todd’s own paper, in the special Christmas edition of What’s New , an in-house company magazine of Abbott Laboratories, a US-based pharmaceutical multinational. In it, Alice in Wonderland syndrome was hailed as a new term, which had been proposed ‘not only because it is pertinently descriptive but also because it points to the fact that Lewis Carroll suffered from migraine’ [1]. For the rest, the text reiterated the contents of Todd’s 1955 paper [2] and offered some quotes which suggest that the godfather of Alice in Wonderland syndrome may have been interviewed in person for the occasion, along with Lippman (the neurologist who had suggested that Dodgson had suffered from migraine [3]), although the two of them said nothing there that they had not already stated in their respective papers.
If this was Todd’s attempt to get media exposure for his newly coined syndrome, it may not have been the most felicitous choice. After all, we may ask ourselves, who, outside the circle of Abbott Laboratories’ employees and clients, would have read the article at the time, and how seriously they would have taken a ‘newly discovered disease’ presented in a festive issue of their company’s glossy. Whatever reasons Todd may have had for agreeing to the piece—which came adorned with four reproductions of Tenniel’s illustrations, as well as a moody gouache of a man in classic dress, visibly weighed down by sorrow—it can hardly have been some grand scheme aimed at launching Alice in Wonderland syndrome into mainstream medical thinking, or a bid to convince scientific committees to include it in their classifications.
Be that as it may, Todd himself was apparently more interested in exploration than in implementation and may, therefore, not have been unduly bothered by the fact that this was not a ‘serious’ journal. His writings indicate that his insatiable appetite for new exotic syndromes had soon led him into different directions. As a consequence, in his later works, he only occasionally described patients with perceptual distortion s. Moreover, on the few occasions that he did describe them, it was invariably in the context of some other disorder that had kindled his interest. In one of his papers from the 1960s, for instance, he relates how a female patient had perceived goods in a shop window as being distorted [4]. As Todd tells us, this was due to an insulin-producing tumour , a new, exciting condition that he was into at the time. And that was what the paper was about. As far as we know, he never doubled back on his original publication to expand or refine his concept of Alice in Wonderland syndrome or to formulate diagnostic criteria for it. Because no one else has done so since, we might as well have a go at it ourselves: that is, to find out what such criteria should preferably look like, and to see what can be said about treatment options—provided that treatment is necessary in the first place.
6.1 Diagnosis
The role of Alice in Wonderland syndrome in current diagnostic classifications is negligible. In my field, the most influential ones are the International Classification of Diseases and Related Health Problems (ICD-10 [5])—which covers medical conditions in general, including neurological and psychiatric disorders—and the Diagnostic and Statistical Manual of Mental Disorders (DSM-5 [6]), which covers only psychiatric disorders. Neither of the two systems features Alice in Wonderland as a diagnostic category. The ICD-10 mentions several types of metamorphopsia under the heading of Other Visual Disturbances, including ‘visual distortion ’, ‘polyopia’ , and ‘blurred vision ’. What the DSM-5 does feature is a diagnostic category called Hallucinogen Persisting Perception Disorder , which I mentioned before as the late-onset, drug-induced variant of Alice in Wonderland syndrome. Elsewhere, the DSM-5 also mentions the symptoms of ‘two-dimensionality or flatness, exaggerated three-dimensionality, or altered size or distance of objects (i.e. macropsia or micropsia)’, but only in the context of a condition called Depersonalisation/Derealisation Disorder. In sum, these two major classifications are of little help when we wish to assess the presence or absence of Alice in Wonderland syndrome. This is not surprising, given the fact that the scientific committees issuing them need data from empirical studies to work with, which for this topic have only recently begun to accumulate.
So, what should the diagnostic criteria for Alice in Wonderland syndrome look like? First and foremost, what is needed is a set of criteria that allows clinicians to distinguish cases from non-cases. Since the hallmark symptom of Alice in Wonderland syndrome is perceptual distortion , the visual and other distortions listed in Tables A.2 and A.3 (Appendix A) would qualify perfectly well as primary diagnostic criteria.
Second, what is needed is a criterion by which to establish whether such cases are also clinically relevant. For the purpose of diagnosing major depressive disorder , for example, the DSM-5 stipulates that five out of nine possible symptoms of depression need to be present. Likewise, we need to decide how many types of distortion need to be present to justify a diagnosis of Alice in Wonderland syndrome. Since even a single symptom may be clinically relevant, as we saw in Paul’s case of plagiopsia (seeing all things as slanted), in Mrs. van Nuys’ case of prosopometamorphopsia (seeing faces change into dragon faces), and in Mr. Müller’s case of somesthetic distortion (i.e. the ‘fluttering gill’ on his shoulder), I would argue that it is not the number of symptoms but rather their impact on people’s lives that should qualify as such a criterion for clinical relevance.
Third, clinicians need to be able to score adjuvant symptoms of Alice in Wonderland syndrome, such as derealisation and depersonalisation —which are not necessarily part of the syndrome itself, since they are also experienced in the context of dissociative identity disorder and other conditions. To that end, we might add a specifier, that is, a clause that covers adjuvant symptoms which do not belong to the disorder’s core symptoms but are, nevertheless, considered to be of clinical importance.
In the fourth place, clinicians need to be able to specify whether distortions are unimodal or multimodal in nature, i.e. whether they are experienced in one or more sensory modalities, since that may say something about their origin and may also have repercussions for treatment.
In the fifth place, it may be useful to have a specifier for the course of symptoms over time, since this may say something about the underlying disorder (i.e. paroxysmal or not) and about prognosis (although we already saw that even long-lasting symptoms are sometimes very amenable to treatment). For that purpose, we should have a system that allows clinicians to operationalise for how long the symptoms have been present, whether they have been present continuously or intermittently, and whether or not they are currently in remission.
Sixth—and finally—clinicians will need a specifier that reflects the demonstrable presence or absence of an underlying medical condition, such as encephalitis , migraine , epilepsy , substance abuse and so on, in accordance with the known possibilities as listed in Table A.4 (Appendix A). This includes so-called ‘peripheral’ causes such as eye disease and labyrinthine disease —plus a category ‘not otherwise specified’ for cases where the aetiology cannot be established with sufficient confidence.
On the basis of these considerations, Appendix C provides a proposal for the full diagnostic criteria for Alice in Wonderland syndrome, to be used in clinical practice and to be taken into consideration for inclusion in international diagnostic classifications.1
Obviously, the diagnostic process itself stands and falls with proper history-taking. To assess Alice in Wonderland syndrome in clinical practice, clinicians need to be familiar with the numerous types of distortion that can be experienced and also be open to encountering new ones that have not yet been described in the scientific literature. That includes distortions in sensory modalities other than those described by Todd .2 While assessing the presence or absence of these symptoms, it may be helpful to use material that enables one to visualise each separate type of distortion.
- 1.
Alice in Wonderland syndrome, central type , in the context of another medical condition (to be specified if known);
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