During my conference day I attended five presentations in all, three plenaries, and two from Stream A, which I had selected as the one I’d deemed most likely to have the least “child specific” content when the initial programme was published. I was, however, pleased to see that the slides for all streams had been included in the conference pack so I’d be able to look through them later.
At this point, I’d like to add a content warning. The titles of the talks I attended were: Exploring depression, Coping strategies for anxiety, Deliberate self-harm in children and adults with autism, Autism and psychosis, and, Catastrophising – why do we do it and how can we deal with it? As you can probably guess from those titles, this wasn’t exactly light-hearted subject matter, and suicide, suicidal ideation, and self-injury were discussed on several occasions. This whole blog carries, on the home page, a warning about such things, but this post might be a bit heavier on such content than usual, so might be one to save for later if you’re currently vulnerable. I should also say that I’m using language I wouldn’t usually use (for example “people with ASD”, and referring to autistic people as “they”) to reflect the way some of the speakers presented more accurately, even though such language is not preferable to most autistic people, and definitely not to me.
This blog post might also be one of the longest I’ve ever written, but I wanted to include the whole conference in one post rather than splitting it. I’m also aware that I’m simply reporting on the material presented and where I’ve commented on that material it has been entirely from personal experience. I have not, at this stage, made attempt to verify or refute any of the material from a scholarly or research perspective.
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Tony Attwood began with his talk on depression, which linked in with his recent book “Exploring Depression and Beating the Blues”. He outlined the proportions of those with ASD who had depression as being approximately one third each of continual depression, cyclic depression, and no depression. He discussed “depression attacks” as something that “they” go through, and described how, at those times suicide was possible simply because the person suffering the “depression attack” would be desperate for the pain to end. Certainly, my own experience when severely depressed has been that my primary motivation for the suicide attempts I’ve made, or the ones I have planned but not executed, has been a strong desire for the pain to stop.
Attwood went on to discuss the overt pessimism of people with ASD, their diminished vocabulary to describe their worries, difficulties with friends, sensitivities to sadness in others, how sadness and anxiety seems to “stick” in the brain more than happiness, and how they accept “I’m stupid” messages more readily than others. Intellectual performance anxiety was also discussed, as many people with ASD struggled with sport and socialising they relied heavily upon intellect for self esteem (this was certainly the case during my own teenage years).
“Special interests” and their role in combating depression were discussed. The old clichés were wheeled out – dinosaurs received a mention, and the description of a child who had stated they “wished to be a robot” raised a titter of laughter from the assembled delegates. It was asserted that people with ASD liked to describe themselves by “what they do”, and there was a brief discussion of teenage girls with ASD and how they were not bitchy, and were likely to be interested in opera at age 15, so might come across more like a 25 year old while being emotionally less mature. While I’d have challenged Attwood on the emotional maturity thing, I recognised myself as a teenager who wasn’t much interested in other teenagers – although in my case I was into string quartets, symphonies, piano concertos, tone poems, and oratorios – my love of opera didn’t really blossom until I was at College in my early 20s!
There was some slightly uncomfortable discussion of how “Britishness” corresponded to “Asperger’s Syndrome”, with mention of Oxford and Cambridge, and the Antiques Roadshow, which Attwood subtitled “Spot the Aspie”! Train spotting and people who were still virgins into their 20s were also mentioned, and the assembled audience once again laughed obligingly, succumbing to Attwood’s skilful rhetoric.
Attwood’s slides provided an interesting checklist (presumably taken from the book – I don’t yet have a copy of it) of signs of depression, and he also discussed strategies that might be deployed to help. I very much liked his concept of an “Energy Bank Account” (pretty much the same thing as I use when I talk about “spoons”, and which I’m currently working on for my own monitoring of my own energy/spoon levels). He discussed the need to treat depression before an ASD assessment can accurately be made, he discussed exhaustion, and also mentioned that if enthusiasm for a usual, big, special interest was gone then depression might have taken root very deeply. He talked about animals often being better than psychologists in some circumstances – that very strongly resonates with my own experience!!! Medication was also briefly mentioned, as were unhelpful tools (such as alcohol – my own “self medication” of choice), and possible strategies for staying safe during a “depression attack”.
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The second plenary was given by Wenn Lawson, who I’d been very keen to hear as I’m very much enjoying The Nine Degrees of Autism, which he co-wrote with Philip Wylie and Luke Beardon. Lawson, who, unlike Attwood, is actually autistic, was instantly relatable. He outlined how applause was painful, which is absolutely the case, and was keen to voice concerns that there might become an “us and them” situation with autistic and non-autistic people. He also mentioned the need to build resilience in autistic people.
Much of the first part of his talk was focused on the notion of object permanence, and how much the lack of object permanence in autistic people can generate anxiety. Object permanence is that knowledge that something is still there, even when you can’t see it. Lawson mentioned his need for a photograph, a visual reminder, of his partner. Lack of object permanence on my part is the reason that we don’t put food away in a cupboard in our flat – if it’s out of sight it simply isn’t there, so my husband leaves it as visible as possible to maximise the chances that I’ll eat!
Lawson also discussed how autistic people rely on being interested and how special interests can be something other than traditional “hobbies” – they could be connected to something to wear, something to eat, or similar. Of course, developing a rather strong interest in autism was the whole reason I was at the conference in the first place – so this made absolute sense to me!
Lawson also discussed how to develop resilience by giving options on plans, to make things less concrete to avoid anxiety when plans were forced to change. He used the example of a school timetable that was prone to change and suggested that actually writing extra options onto the timetable would, to an extent, prepare for possible change in advance, and also gave the example of a girl going to a restaurant who might have to cope with a different table or waitress, and how preparation in advance might be a useful strategy to help the girl cope with issues that might arise. This sort of resilience is a necessary life skill for an autistic person to learn and to practice on a regular basis. Getting outdoors and getting exercise was also discussed as a way of building resilience, and how doing so might usefully be linked to interests connected to technology, such as geocaching, bikes with computer chips (I thought of my own love of looking at the stats on my Garmin after I’ve been for a run), or, in other cases having an animal such as a dog.
The way that more able adults often worry about things more was mentioned and how insight doesn’t actually change the anxiety problems associated with change, but can make it worse, not better. However, it seems that autistic brains gain more plasticity with age (unlike neurotypical ones). Lawson then discussed the processing of information and mentioned his own synaesthesia, which associates colours with moods. He stated that the mood of the audience was predominantly yellow, although I can’t remember what mood yellow represented, partly because the person with the sharp jumper was asking their friend what synaesthesia meant and the friend was googling it on an ipad, and partly because for me, yellow is E major, so everything in my head instantly went into four sharps!!!
The need for different sorts of cues (visual, auditory, kinaesthetic) for different people was discussed, as was motivation. Clubs and social motivations are unlikely to appeal to AS people, so movement and response has to be initiated in other ways. Lawson, like me, fails to see the problem with using ipads and technology in the classroom or in other situations. He suggested that the sort of anxiety triggered by demands placed on the autistic brain might be ameliorated by, for example, sending a text message to an AS person rather than asking them with spoken words. He cited one of his own family members saying that strategies that make the AS person believe that they’ve thought of what to do themselves are often the most successful.
Learning to be independent is often possible, but learning to be interdependent can be difficult with high levels of anxiety. Lawson also discussed the difficulties that AS adults might have when unable to communicate effectively with neighbours and so on because answering the door or telephone provokes too much anxiety. Information that isn’t conveyed by e-mail / text will often be missed. He concluded by mentioning mindfulness and asserting that it is very underrated as a tool for coping with some of the difficulties caused by being autistic.
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Khalid Karim and his colleague Sarah Baines wisely started with a caution about the material in their presentation, which was focused on self-harm. Karim was an engaging speaker, and started by explaining some of the terminology often used to describe self-harm, including self-injury, suicidal ideation and so on. The question of what suicidal ideation actually means was discussed, and whether suicide attempts were part of the same thing. It was also noted that in the research the material available is predominantly concerned with genetics and statistics, but that there is almost nothing written about what can be done about self-harm in people with ASD.
After a brief discussion of how self-injurious behaviour (SIB) can become stereotyped in ASD (as opposed to “impulsive” in psychiatric illness), Karim went on to say how critical it was to ask not WHAT a patient was doing to self-harm, but WHY they were doing it. He also mentioned the recently increasing incidence of suicide in the general population, but that ASD data were very difficult to find and that suicide attempts are very much underreported. Autistic people are, apparently, more likely in general to have suicidal ideation, but with co-occurring depression the likelihood increases dramatically. Many ASD adults have suicidal ideation and have made suicide attempts.
The importance of discovering, in a clinical setting, what a SIB was trying to communicate was emphasised – language skills are often reduced when anxiety is high. SIBs can also be used, consciously, as a coping mechanism, and it’s important to try to understand whether the stressor is internal or external. SIBs can also be comforting and a relief from anxiety, even though they are difficult for an outsider to watch. An outside observer might instinctively try to stop such behaviour, but that might, in fact, have the reverse effect or cause the “patient” to redirect their behaviour to something even more harmful.
Various types of SIB were discussed, some of which were familiar to me from personal experience, and possible causes of SIB in autistic people were listed – for example repetitive, sensory, self stimulatory, poor sleep, communicative, anxiety, and so on. The management and impact of SIBs was also discussed.
Attention then turned to suicidal ideation, which is, apparently, really common in people with ASD – this is also borne out by my personal experience. Suicidal ideation doesn’t, however, always translate into suicide attempts, and, obviously, not every suicide attempt will translate into a completed suicide. It would seem that suicidal ideation peaks in the 20s, and precipitating factors for actual attempts vary. For those still in the school system there seems to be a reduction in suicidal ideation during school vacations. Depression, severe anxiety, and psychosis exacerbate the risks, as can feelings of exclusion – an autistic child in a mainstream school can often be “included, but excluded” so although they are physically present, they sometimes don’t make the same friendship connections with other children, even if they’re not actively bullied.
Karim also noted that the media has a role to play in self-harm. He observed that every time there is a programme on self-harm on the television the incidence of self-harm increases. He also noted that conventional “anger management” is a waste of time in these situations, and that poverty has a really significant role in increasing self-harm. Dangerous behaviours can also increase if they produce a desired response – the example was given of a kid climbing up a high building in order to get the fire brigade called because they liked fire engines. It was noted that understanding autism and mental health issues is complex and really hard work. A further example was given of a neurotypical carer assuming that a child’s self-harm was the result of the child’s mother having recently died, when, in fact, the issue was not the death of the mother but simply that the child was being bullied at school.
The issue of whether the “patient” even WANTED to be treated for their SIB was also addressed, and whether they even thought it was a problem. Maybe someone hitting themselves is a valid coping strategy, however distressing it might seem to an outsider. The need for flexibility in dealing with patients was discussed – an example was given where Karim had interviewed a child who was happy to be interviewed while upside down. It was also noted that sometimes the best strategy was to treat, say, sleep problems first, and that suicidal ideation in kids under the age of around 10 was often a way of expressing distress rather than really showing an understanding of death.
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For the second session in Stream A, on psychosis, Tony Attwood was back at the microphone. He started by exploring the connection between ASD, schizophrenia, and psychosis, and went on to observe that schizophrenia was a common misdiagnosis in teenagers and adults with an ASD as the psychiatrists were often uncertain of the interpretation of phrases such as “hearing voices” and that imaginary friends and catatonia were often confused with signs of schizophrenia. Attwood also asserted that people with ASD were great at logic but less good at emotions.
Attwood discussed the connection between imaginary friends, people with ASD talking out loud while thinking in order to clarify thoughts (this reminded me of my own “scripting” behaviour), and the late development of internal dialogue in people with ASD. He also returned to the concept (mentioned earlier in the day) of AS people assuming what he termed “god mode”, in other words, compensating for lack of sporting and social abilities by developing an intellectual arrogance, especially if they were smart. He called this “Sherlock syndrome”.
Misdiagnosis of schizophrenia was further discussed. Many patients on chronic mental health wards were given a diagnosis of schizophrenia and then locked up for decades, when, in fact, they had ASD and had then suffered a breakdown.
The psychological reactions that many people with ASD experience as a result of being different were also listed, and it was noted that depression often starts young in people with ASD, who can seriously question the value of life (this latter tallies absolutely with my own experience). There was also an assertion that effusively social places such as Italy might be worse places for people with ASD than places such as Japan. The mimicry, acting, and chameleon-like behaviour of women and girls with ASD was mentioned as was the fact that such behaviour can lead to dissociative personality disorders and, in adulthood, substance abuse. Furthermore, those who hide in their houses in adulthood and become reclusive can apparently suffer from psychotic issues owing to sensory deprivation. It was also noted that people with ASD have high levels of paranoia and jump to conclusions, leading to diagnosis of prodromal signs of schizophrenia.
Catatonia was then discussed at length, as was isolation, and the withdrawal of many ASD people from the world because life was simply too difficult. The slowness of movement and difficulty initiating actions in catatonia was noted, as was the dopamine hypothesis and possible link with Parkinsonism. Attwood also asserted that catatonia was regressive.
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The final plenary was also given by Tony Attwood, who was talking about catastrophising, particularly in regard to meltdowns in people with ASD. He started by outlining the rapid acceleration in intensity of emotions in people with ASD, describing the autistic brain as having an “on/off” switch rather than a neurotypical “dimmer” switch. He gave a brief introduction to the neurology of an ASD brain, positing that ASD amygdalae are larger and more overactive than those of neurotypicals. He suggested that this might be an adaption to aversive sensory experiences. The role of the frontal lobe in controlling “fight or flight” behaviour was also discussed as was the fact that in people with ASD the frontal lobe doesn’t receive information before a meltdown, so conscious control of emotions is not possible at that point. A meltdown might have been building for a while before it actually happens.
Attwood went on to discuss the potential use of fitbits (and presumably any other device that measures heart rate) as a good external indicator of a person’s anxiety levels. He also noted that saying “just relax” to a person in a heightened state of anxiety does not work, but that focusing on breathing or similar might.
He went on to discuss the mind of a filing cabinet, full of cognitive and social skills and proposed that one of the problems with intense emotions was that they effectively “locked” the filing cabinet, cutting off those skills and strategies and that even with instruction, many coping tools would not be available and that the best strategy was to remove triggers and to aim for calmness. He suggested that those dealing with meltdowns should behave “like a satnav” calmly redirecting and avoiding all analysis of what happened. He also suggested that getting rid of all need for sociability would be a good idea, and, if possible to engage the mind in some sort of special interest related activity – he gave the example of a child who was keen on numbers being encouraged to focus on some sort of counting activity. As a person who has huge meltdowns myself I did find much of this advice sensible and I might draw on it when I’m putting together the “how to” guide I’m eventually hoping to produce for those who might encounter me at such times.
As had been the case during the first session of the day, “depression attacks” were discussed. The advice for dealing with these “depression attacks”, which I thought sounded rather like what I’d call some sort of shutdown, was basically good.
Other tools and strategies were also discussed, particularly physical activity and the notion of using physical activity specifically for emotional release, although stimming, one of the most powerful tools for regulating emotions, was not mentioned. I’m very familiar with such strategies, although I’d not previously thought of “smashing up the recycling after school” as a tool for controlling emotions. Special interests and the value of animals were also discussed, with examples being given of parents being advised to get pet snakes and horses for their children! The role of medication and examples of maladaptive and adaptive strategies were also discussed as the session concluded.
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The four sessions I didn’t attend because they were in different streams were on jealousy, speech and language therapy, self-esteem, and mindfulness. I’ve glanced briefly through the slides for the first three of these and read the article on mindfulness that was given in the conference pack. I have used mindfulness to deal with my own mental health issues over the last few years, with considerable success and I was pleased to note that the author of the article emphasised the circumstances under which it was not advisable to begin a mindfulness training programme – namely when there is upheaval in life or suffering from acute psychiatric conditions. I’d have been interested to attend any of these sessions, particularly the ones on self-esteem and mindfulness.
So, eight weeks on from my diagnosis, I’m once again pausing to observe the passage of that time, and, understandably, reflecting on how life has progressed since I sat in the room at the end of a five-hour interview and testing session and was told that I clearly fulfilled the criteria for a diagnosis of autism spectrum disorder.
Finally Knowing Me: An Autistic Life 