Pride

Today is, the internet informs me, Autistic Pride Day!

This is another of those things that, until this year, I wasn’t aware existed. Just like autism awareness day / week / month or whatever, I was pretty much oblivious to all of this stuff, just as I was oblivious to the fact that I was, it turned out, autistic!

I really should pay more attention!

I’m really not sure I can claim to be proud to be autistic, since being autistic was an entirely effortless process on my part – all I had to do was be born! The processes that meant I have an autistic brain went on all by themselves without me having to do anything at all – I just existed in the only way I knew how!

I’m not quite sure even that I can be proud of surviving this far while working to survive in a world that turns out to be a bit more challenging for me than it is for many others. I’ve had several times of trying not to survive and my survival through them has been entirely down to luck. I suspect I only coped with such high anxiety levels because, to me, they were just normal!

Neither do I feel that I have yet done anything much else to be proud of, although I’m at least sufficiently aware to know that some of my friends will tell me off and say “Yes, but you do xyz and it’s amazing…” and so on! I’m still working on this bit, and it’s probably the area where I have the most internalised ableism towards myself – I know I haven’t fully dealt with the issues discussed in Expectations Gone and Career Snake!, and that that’s still very much work in progress.

Furthermore, the society in which I live generally measures value in terms of financial success – it’s all very well being told “well, you write a nice blog” or “that was lovely that you played some music”, but if I show up at the checkout in the supermarket and tell them that I’d like to pay for my food with “nice comments”, then I’ll go hungry. The part of me that was brought up to believe that I would earn my own money and be “successful” in that way is still fighting with the part of me that knows just how little I contribute and how I am entirely dependent upon handouts from others to survive. I can’t even claim to be pulling my weight domestically – I don’t raise kids because I couldn’t have them, and my husband does about 90% of the domestic work in the flat!

Anyway, I digress. This is supposed to be about pride. And, perhaps, pride in a rather different sense, but because of the way my mind works it’s going through all sorts of “pride” things and I now have a video clip going through my head that shows a large group of rather handsome lions roaming around a grassland somewhere in what is probably Africa! But I’m not supposed to be blogging about lions!

So, returning to what the day is supposed to mean, it seems that it’s meant to be some sort of celebration of neurodiversity. There are probably marches and things and parties or whatever, that I’m unlikely ever to go to because I’m not really a marching sort of a person – more of a blogging sort apparently!

It also seems that one of the basic tenets of the movement is that neurodiversity in general (and presumably autism in particular) is part of a natural variation in human existence, rather than some deviation from the norm that requires a “cure” (I’m still at a loss as to what people who discuss “curing” autism can possibly mean – it just makes no sense, given that it isn’t an illness or a disease).

It also seems to emphasise the notion of autism as a “difference” rather than a “disability”. I’m still forming my ideas about difference and disability, and still getting to grips with the whole “medical model” and “societal model” thing. I class myself as disabled (and have done for years, ever since it became apparent how my mental health issues affected my functioning), but I’m still trying to figure out to what extent the disabling effects of me being autistic and mentally ill are a result of my inability to function in certain ways and to what extent they are a result of the society in which I live. I haven’t even managed to sort out what bits of my “disability” are down to me being autistic and what bits are the result of mental illness. There’s a lot of work still to do.

The more I think about all this, the more I realise I don’t know, and the more I feel like I’m only just scratching the surface of issues about minority groups, privilege or lack of it, models of disability and so on. I’m a musician and scientist, not a sociologist, and I’m a bit out of my depth at the moment. There is a lot of observation and learning and thinking still to be done before I can really start to analyse it all.

The other basic tenet of the autistic pride / neurodiversity movement seems to be that it is led by autistic people themselves and is not a day for organisations led by non-autistics! This, I really hope, is something that will prosper. It’s so true that so much autism research and so on is still led by non-autistics and that there is still such a long way to go in really understanding (as I discovered at the recent conference) what it’s like to live as an autistic person in a world that is, for want of a better expression, distinctly sub-optimal for our neurology!

Of course, given the situation I’m now in, I’m actually rather fascinated to discover what it might be like NOT to be autistic – I feel, to a large extent, that I’m just me and always have been, and what I actually discovered when I found out I was autistic was not that I was different, but that 90+% of the rest of the world was different! From my perspective my autism diagnosis was effectively the same thing as most of the rest of the world receiving a diagnosis of allism!

I’d really like to spend a day living with a neurotypical head to see what it was like because it would be fascinating to compare with my own experience. Are there really people who sit still on chairs and don’t find it deeply exhausting and uncomfortable? Is it actually true that there are folk who can chat in small groups without trying consciously to compute every single thing they say and work out when they should contribute to the conversation? I’d be fascinated to discover – though I wouldn’t want to commit to more than a day because I’ve been used to my own head for quite a long time and there might be all sorts of things about my neurology that I’d suddenly miss – I don’t even know at this stage what they might be because I’m so used to my normal being my normal and so unaware of how other types of brains might work! Perhaps the fact that I worry little about things that seem to vex many people is part of my being autistic and I’d really miss that freedom of thought? Who knows? But I do know that I’ve discovered a contentment since getting my autism diagnosis that’s rather nice and that I’m not in a hurry to mess with it!

Anyway, I digress again. And now return to the tenet of autistic people themselves having a voice and being part of the discussion of neurodiversity. That is, of course, part of something that I do manage to do a bit (being a blogger, not a marcher), and, as I discussed in my final conference blog post, maybe an area to explore for the future. Who knows what I’ll be able to do, or what impact it might or might not have, but it’s a possible direction for the future and if I can ultimately be helpful to other members of the autistic community, which I have suddenly, and rather unexpectedly, become part of, then maybe that really will be something to be proud of!

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Understands What?

“Until everyone understands” proclaimed the slogan on the front of the conference pack for the National Autistic Society’s one-day conference on Autism and Mental Health.

I sat, during the afternoon tea break of this conference, which I’ve already described in some detail in My Conference Day and Content Report, and pondered exactly who “everyone” was, and, perhaps more crucially, exactly WHAT everyone would, ideally, understand about autism and autistic people. My experience, at a conference supposedly designed specifically to promote understanding about autism and autistic people had indicated that understanding was still distinctly lacking!

First off, there were the practical arrangements at the conference itself as far as autistic people attending were concerned. The worries caused by the initial e-mail about the parking were just the start of a really stressful and difficult conference that seemed to have almost ignored the access needs of the very people it was supposedly advocating for. Being forced to sit in really close proximity to strangers who were wearing non sensory-friendly clothing was absolutely horrible for me, and my request for an end seat was given hardly a thought. Furthermore, no allowance was made for those of us who struggle to sit “normally” on chairs and cope by rocking or pressure stimming with our legs folded under us. There was also no area available for those of us who might happily have spent the day sitting on the floor. Another autistic blogger who was at the conference and blogged about it afterwards observed that some delegates were strongly perfumed – although my own sensory sensitivity to perfume is relatively low, some autistic people find strong scents absolutely unbearable.

I had already compensated for lighting and sound issues by wearing sunglasses and earplugs (the onus was entirely on me to take care of myself this way) and the impossibility of even knowing where the quiet room was without any sort of map or plan in the conference pack meant that I never even located it. Someone online said there was a sign in the foyer, but getting into the foyer any time after the start of the conference was, for me, impossible, owing to the sheer number of people crammed into such a small space. Similarly, the instructions for splitting into streams were only given in spoken instructions, which I struggle to keep in my head – I never did work out where Stream B took place, and had I been hoping to attend that stream would have been really grateful for a map showing where that session was located.

And, of course, it was the issue with the foyer that prevented me from accessing food, drink, or toilet for the whole day. In order to have accessed any of these I’d have needed a carer, but there was no provision for one to attend with me unless they also paid the conference fee. As an autistic adult (and, indeed as a person on low income) I was entitled to a “reduced” fee for the day (including, presumably, the cost of the food and drink I was unable to access), but it was still sufficiently high compared to my income that I thought long and hard before signing away what was, for me, a large amount of money (you can maybe gather by now that I really am keen to learn and to get information, as I spent a very large slice of my monthly income to spend a day in quite significant discomfort and you might well ask why I would do such a thing – I hope I’ll answer that question later). Furthermore, the displays of books that I would have liked to have browsed were also in the foyer and therefore inaccessible – it’s little wonder that I do most of my book shopping on Amazon these days!

I was, to an extent, prepared for many of the difficulties I encountered throughout the day. Although I have not been to large conferences for a long time (I believe I last wrote a conference report around 20 years ago), I know that the logistics of organizing a large conference are not straightforward (and even less so when the space booked for the conference was quite so tight as it turned out to be). I also knew that I was, to an extent, entering a world that would be alien for me. It was obvious that the registration form had not been designed with autistic people in mind – not only was the pricing structure unclear as far as autistic adults were concerned, but the drop-down box forced me to use “person first language” and describe myself as a “person with autism”. I have been part of the autistic community for considerably less than a year and in that time it has become abundantly clear that, like me, the majority of autistic people prefer to refer to themselves as “autistic” and not “with autism” (which somehow implies that autism is an add-on). I’ve heard “professionals” say that “person with autism” emphasizes that autistic people are people and is therefore, somehow “better”. To be brutally honest, if someone needs reminding that we autistics are people, then the problem lies with them!

However, there was a really bright moment in the day when Lorraine MacAlister was discussing the support programme Teen Life at the end of the lunch break. MacAlister explicitly stated that the language of the programme would refer to participants as autistic teens, having taken advice from autistic people themselves! That was the moment that made me say YES! to myself. Somebody in the NAS is listening. Somebody IS understanding and believing autistic people. This is progress! Yay!!!

It was also obvious from the list of delegates attached to the final conference instructions e-mail that as a mentally ill autistic adult I would be in the minority (at a conference about autism and mental health, yes, I know – the irony is not lost on me) and that most of the delegates had described themselves as teachers, carers, parents, and so on. I’d be interested to know how many autistic people attended (I knew there were several through my contacts on facebook, and I subsequently discovered on twitter that there others who’d been there), although I do absolutely recognize that educating those who are not autistic is a really important part of the NAS’s work – it’s just a shame this education cannot extend to showing non-autistic delegates how an autistic-friendly event could be run, and didn’t include education on, for example, not wearing strong perfumes!

And so we come to the speakers. Like with the logistics I was prepared to encounter tough material (if I’d been expecting fairy stories then I was in the wrong place), and I’d read and absorbed enough information about the keynote speaker to expect that there might be some challenging aspects to his presentation. However, I was here this time to see (and hear) for myself rather than to read the reports of others and I started out with as open a mind as I could.

From the outset it was obvious that Tony Attwood is supremely skilled in the art of rhetoric and is a slick and practised speaker. However, it also became obvious very early on that he was not addressing the entire audience. I very quickly realized that in this context I was a “they”, and there was no concession given to the fact that there were autistic delegates present. While the majority of the audience laughed at Attwood’s “jokes” (about robots, Oxford and Cambridge, the Antiques Roadshow, and whether or not autistic people were still virgins in their mid-20s), I started to become somewhat irritated by this “humour”, most of which seemed to be carefully calculated to get the non-autistic members of the audience on side. I also wondered, though, how funny the parents present would find the jokes about virginity when their own children reached their mid-20s and were struggling with relationships? The fact that autistic children grow up into autistic adults (rather quickly) seems to be perpetually forgotten or ignored by so many people who focus on children.

As someone who was a classroom teacher for 5 years, I’m absolutely aware that humour can be a great way to teach and to help an audience to remember points that are being made. BUT, and this is a really big BUT, when that humour is at the expense of a minority group, it crosses the line from being fun and educational to being downright offensive. Attwood’s references to having “learnt Aspergerese” as some sort of language came over as downright crass, and his pointing out of his own proof-reading mistake in one of his slides, followed up by the assertion that “some aspie would probably point it out to him” was horribly reinforcing of stereotypes that really should have been consigned to history by now. I wrote in my notes: “You do not need to be autistic to be able to proof-read a slide properly – I have loads of allistic friends who are superb proof readers!!!” Attwood also used the term “neurotypical” to refer to non-autistic people throughout, never explaining that he was doing so colloquially or addressing the fact that there exist non-autistic neurodivergent people, who he basically erased from the planet with his language. He is, sadly, not alone in this.

Throughout all of Attwood’s sessions I kept having to remind myself that the “they” and “them” he was talking about was actually me. It felt like, as far as he was concerned, I was not part of his audience but one of his “subjects”. The converse of the “humour” was the sad story – tales of family members and patients also elicited responses from the audience, although in this case, sympathetic muttering rather than polite laughter. Throughout the day I was determined to be my authentic autistic self and didn’t deliberately seek out other humans (I was overloaded by the sheer number of them in the room in any case), and nobody spoke to me or approached me. I wondered, when hearing these sympathetic mutterings what people were thinking about the obviously autistic person sitting in the corner gently rocking to myself and chewing on a necklace designed for the purpose (I’d already damaged my fingers by chewing the skin off – ironically during the session on self-harm)!!!

At the outset of the last plenary Attwood directly spoke to us (the audience) with the words “You, as the parent/carer…” which was an interesting experience for me since I am neither a parent nor a carer. Was I even supposed to be at this conference? Was this talk for me at all? I have heard the term “othering” used when describing Attwood’s style, and it seemed very much to apply in this case. He also used phrases such as “somebody must fall in love with an aspie or they’d have died out years ago”, implying that “falling in love with an aspie” was some sort of weird penance maybe? He also seemed to focus rather heavily on those autistic people who would, under the (now superseded) DSM-4 have received (and still do receive, in some places under the ICD-10) a diagnosis of Asperger’s Syndrome, and also used the terms “severe autism” and “classic autism”, neither of which is beloved of many autistic people. I didn’t get much of a sense that he respected the whole of the autistic community with all its richness and variety of experience.

There were other indicators that Attwood was not really up to date with current thinking in the neurodiverse community and had focused his work on the view from “outside” rather than listening to those of us who make up that community. I also believe I heard him misgender someone, though I’m not in a position to call him out on that without hearing from the person concerned and establishing what they are comfortable with. It was also an interesting conference to attend for me as my main experience at conferences thus far has been of academics presenting to academics and many of the questions are often challenges or additions to the work presented. The questions that were drawn from the floor in this case were predominantly of the “please can you tell me what to do about my child / children I teach” and so on. When asked about autistic children in school being bullied, Attwood suggested that some other kids could be “trained to speak Aspergerese” (that phrase again) and could then be issued with “jigsaw puzzle badges”. At the mention of puzzle pieces I nearly fell off my chair. Does Attwood really not know just how offensive the puzzle piece symbol is to many members of the autistic community? Should somebody tell him?

It was a really interesting experience actually hearing all this. And it was in contrast to Khalid Karim’s professionalism and Wenn Lawson’s inclusive friendliness. I’m not saying that Attwood’s work hasn’t been incredibly useful in many ways. His strategies for balancing energy and dealing with meltdowns and shutdowns are excellent, The Complete Guide to Asperger’s Syndrome is a mine of information, and I shall also willingly read the recent book on depression, and it was obvious from some of the questions that many of the people at the conference learnt a great deal from him – I totally appreciate that most of them probably don’t, as I do, have 45 years experience living as an autistic in a non-autistic world, many of them will not have self-harmed or attempted to take their own lives, nor will they have experienced meltdowns and shutdowns from the inside. Neither will most of them have spent the last 9 months intensively studying absolutely everything they possibly can about autism, as I have! In many ways that is my privilege. Although Attwood would probably just tell me I was being a “typical aspie” or some such!

I had read tales online of autistic people returning from Attwood’s talks upset and traumatized. Partly because I was prepared for it, and partly because I treated the whole experience as an academic exercise, that wasn’t the case for me (although my sensory system was so overloaded when I got home that I could barely run a bath because the noise of the water running was so painful to my ears). Half way down the penultimate page of my notes I wrote “I wonder whether I could organize a proper autistic friendly conference” and I remember thinking “Right, my goal is to be speaking at things like this in 5 years time and I’m going to remember this experience”. Going to the conference has, to an extent, started me thinking about what role I might have in the future – what place there might be for an autistic adult who has academic experience, teaching experience, a fierce desire to learn, and is happy to stand up and speak to an audience? Is there some small way in which I can improve the world for all autistic people? Can I facilitate understanding of all things autistic using both experience and knowledge? Only time will tell. I know that, for the time being I’m still learning and still recovering from a severe autistic burnout, but I am also starting to get ideas and little beginnings of things to think about for the future. I might have spent most of the day silent, stimming, unable to access food, and not putting on any sort “social mask” (simply not enough energy for such a course of action), but it didn’t mean my brain was switched off – in fact, allowing myself to stim and not to worry about pouring energy into trying to chat to people or behave “appropriately” was the exact strategy that allowed me to spend my energy absorbing the information and thinking about it in some depth!

The conference has also inspired me to return to serious study of autism. Since my diagnosis in February I’ve eased off a bit and lost the impetus slightly, but it’s now back and I have new things to think about. I sat at the end of the conference wondering how this phase of “understanding autism” will be viewed in the future. I pondered the connection between adult autistics and allistic autism researchers, and how the two might work together and respect each other. I thought about the organization of events, about what might be researched and written, about the lack of focus on adults, and about how the current “understanding” seems to be very much based on models created by non-autistic people.

I got the feeling that this whole area is still very new, and that genuine understanding of autism is still very much under construction. But I also wondered whether Attwood’s approach was beginning to become part of “the past” now and whether greater consultation with autistic adults might be the way of the future. I came away with a sense that if the National Autistic Society really are going to keep going “Until everyone understands” then they have a long job ahead of them, and even their conference organizers still have a lot of understanding to gain – I didn’t return the feedback form at the end of the day because I simply didn’t have the energy, but I shall tweet this blog post to the NAS, and maybe, just maybe, somebody there will read it.

And as for me, was it worth going? Absolutely it was. It took me two full days afterwards to stop feeling really quite ill (there’s a reason these blog posts are being published a week after the event), but the knowledge I gained (about many things) was huge. I’ve also made new contacts online, started generating ideas in my mind, added to my reading list, and gained insight about many things.

Perhaps even more than that though, I proved I could do it. It wasn’t easy, and it was the first time I’d been out of the flat all day, without a known ally to look after me, in over 9 months. It took an awful lot of energy. But I managed it, survived, didn’t fall to pieces, and even learnt quite a lot. It really did feel like something of an achievement!

Content Report

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.

***

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”.

***

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.

***

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.

***

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.

***

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.

***

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.

My Conference Day

As usual, my curiosity got the better of me. I wanted to know, to find out more, to increase my knowledge of what was going on with autism research, and to see some of the people who had thus far been just names on book spines or people I’d encountered in internet discussions. And so, when I came across a link on facebook to a one-day conference, organized by the National Autistic Society, on Autism and Mental Health, I initially saved the link, then, in a moment of confident madness, signed up to attend.

It turned out to be a really really interesting day. For very many reasons. I learnt a lot!

I was expecting it to be supremely challenging and had already baulked slightly at the confirmation e-mail, which had stated that parking was limited and that those who couldn’t park would have to use a park and ride service (there seemed to be no thought for those of us who often find public transport almost impossible), and, despite my best attempts to be early, heavy traffic meant I arrived rather later than I wanted to. Fortunately the hotel staff directed us to a nearby place to park – which was great in that I didn’t need to walk a long way in lieu of taking a bus, but made me edgy because it didn’t tally with the instructions in the e-mail.

However, I wasn’t actually late, which was a huge relief, and I went in to register in a very busy foyer area – I found my own name badge and was then handed a scratchy lanyard and a spiral bound conference “pack” (more of a “book” than a “pack” really). I noticed many displays of books and so on, which I hoped to look at later, and managed, with considerable effort, to collect a drink and a pastry on my way in – I hadn’t been able to eat before leaving so figured some nourishment would be a good idea. I then headed into the hall, where around 400 people had gathered.

A woman in an NAS t-shirt was close by the entrance. I asked if it was possible to have a seat on the end of a row. She told me that “there might be some over there”. There weren’t, so I sat on the penultimate seat on the front – at least there was space in front of me that way. Someone else came and sat on my other side, making me feel crushed into the small chair which was crammed right up to the chairs next to it. This was going to be really hard work. Exhausting and difficult. The stress levels started to rise.

A voice came over a loudspeaker asking people to fill up rows from the middle. More squeezing in, more crushing up. This was in stark contrast to the poetry event I’d attended a couple of weeks earlier where it had been announced that people should feel free to move chairs off to the side, to sit on the floor, and to be comfortable. Today was not going to be comfortable at all, rather the reverse. I took my fleece off and the person next to me invaded my space with their prickly jumper and even more prickly hair, making my arm flinch – it was like being prickled by a cactus the whole way through. I wedged my fleece between us in an attempt to avoid further prickling. The person on my other side (evidently also autistic) tried to move as far away as possible but was not confident enough to move their chair at that stage.

There was a short introduction by two people: Lorraine MacAlister, who was wearing a fascinating blue top with sort of “open-plan” arms, and Rachel Townson, and then the first of the day’s plenary sessions, from Tony Attwood, began. I’ll discuss the content of all the conference sessions I attended in a separate post because I took 11 pages of notes in addition to the mini reproductions of the slides that were part of my conference pack, and even I know that there might be a sensible limit to the length of blog posts sometimes!

About half an hour into the first plenary I knew I wouldn’t be able to get through the whole thing sitting “properly” on my chair. I could feel the sweat starting to trickle down my back and knew that the nauseous feelings I get in such situations wouldn’t be far behind. I moved my chair forward ever so slightly in the desperate hope of getting some space, and eventually took one of my shoes off and folded my foot underneath me, which really helped. I also put my attenuating ear plugs in, because I was becoming aware that the amplified speech was already overloading me, and this was going to be a long day – if I didn’t want to become a practical demonstration of an autistic meltdown for the assembled company I was going to have to take some action to avoid it.

I focused on taking notes, something I’ve learnt over years of being a student and taking minutes in office meetings. The material was not unfamiliar to me, both from reading and, sometimes, from personal experience, and I was on a mission to learn, so taking notes and following the slides seemed like a good strategy in any case. While there is much about Attwood that is controversial (I’ll be writing about that later), I was still, at that stage of the day, observing and taking in information, and hadn’t reached the “analysis” stage.

The second speaker, Wenn Lawson, was instantly relatable in a way that Attwood hadn’t been. I was still desperately uncomfortable, squeezed into the tiny chair, without sufficient space to stim as I felt I needed to (a discreet fidget cube will only get me so far if my body is predominantly contorted into a “normal” sitting position), but the calmness of Lawson’s delivery helped to bring the anxiety down somewhat. I was still much disturbed by the noise of pages turning, and even more so by the feeling of the air on my arms from those close to me turning their pages, but I knew I’d manage to get through to the break time by this stage.

Break time meant relief from the chair. I knew everybody would be moving anyway after the break, because the conference was splitting into three “streams”, each focusing on different areas. I got up and went to the back of the hall and out to the foyer where refreshments were available. And that was as far as I got. I knew, from the way in that tea was going to be problematic for me – hot water, tea bags in wrappers, milk goodness knows where, complication complication complication. I’d just about managed it once, at the start, when the foyer was rapidly emptying. This time there was no chance. I even struggle to make a cup of tea in my own kitchen much of the time, and I knew that in these circumstances it was beyond me. I stood and looked at this sea of people and thought “Bollocks! This is the bit where I need a carer and I haven’t got one” and for a brief moment thought that attending at all might have been a mistake. I might even have gone home at this point if I’d been able to get to the exit, or if I hadn’t been determined to “complete”, in the way that I so often am!

So I went back into the hall, unrefreshed, and resigned myself to the fact that I probably wouldn’t be able to eat or drink or use the toilet all day (the toilets were also in the foyer place). They’d said there was a quiet room of some sort, but I had no idea where it was. They’d said to ask. I’m not sure I could have found words to ask anyone, even if I could have worked out WHO to ask from within the giant sea of humanity threatening to wash me away in a tidal wave.

But I have one or two strengths that meant I survived. First, I had, sensibly as it turned out, taken a couple of snacks and a bottle of water with me in my bag. Secondly, I might be very low on executive functioning skills and I might also be very mentally ill a lot of the time, but physically I’m pretty robust. My system can survive on snacks. I can go all day without a wee if needs be and if I budget fluid intake carefully. So I headed for the safest place I could find, which was the corner of the room where the next session was to take place. I moved a chair off the end of a row and put it next to the wall so I’d be able to rock without bashing into anyone else and pressure stim against the wall, and I got out my phone and retreated into my world, with my friends, where I knew I’d have loads of support.

I discovered online that there were other autistic people there having exactly the same problems that I was. The phrase “not autistic friendly” popped up, and I knew, at least, that I wasn’t the only one who was having difficulties. On my own facebook wall I updated my friends, and had a brief chat on messenger with one of them. Tension released somewhat. There were people there who could rescue me by talking me through it online if necessary.

My improved seating arrangements, with both shoes off now, sitting comfortably with my legs crossed up on the chair, back against the wall, made the next session much easier. The autistic person who’d been sitting next to me in the first session was nearby and had clearly had enough of chair sitting too and moved, sensibly, to the floor, which was quite a nice red stripy carpet that I’d be happy to have in my sitting room given the choice. Khalid Karim turned out to be an engaging speaker and the subject matter was actually more interesting than I’d anticipated.

Then was lunchtime. I stood up and wandered, again, to the back of the hall to see whether there was any possibility at all that I’d be able to access lunch. There wasn’t. Not a hope. I stood for a few minutes and assessed the situation then returned to my seat and to the internet on my phone. Some of the other autistic people online had managed to find the quiet room and said it was lovely. I looked in my conference pack to see if there was any information as to where it was, but there wasn’t, so I abandoned that idea. I ate the snacks I’d brought with me and sipped my water, just enough to prevent total dehydration, but not enough to need to access a toilet.

I chatted to my friends on facebook again – one of them even offered to ring the hotel and try to get some food sent to me (I have some superb friends), and found myself accidentally listening to something about autistic teenagers, presented by Lorraine MacAlister, which had a moment that made me say “YES!” to myself, and gave me hope that somebody somewhere is actually listening to autistic people.

And then it was back to Tony Attwood for the rest of the afternoon. It was rather an Attwood-heavy day all in all! I was, however, reasonably comfortable in what I now regarded as MY seat (by that point I’d have happily wrestled anyone who tried to move me). Even though people were still eating and still trying to access lunch, Attwood refused to delay the session, basically saying that people “should have been faster”. I’d be interested to know HOW they could have been faster, since 400 people trying to eat from a buffet in a crowded foyer in 50 minutes is such a tall order!

It was somewhere during this session that Attwood’s “humour” really started to grate on me. I wrote something in my notes about the quantity of wine I would need this evening in order to recover from some of what I was hearing, then, having vented slightly in ink, returned calmly to taking notes about schizophrenia. I have an academic training. I use it when I need to. I had got to the point where I was starting to critique this man. And I was still gathering information. Information is my currency.

After a final tea break (during which I didn’t even attempt to leave my seat) there was a final plenary. I watched them undivide the room back into its full format and those who were still there (which, creditably, was most people – though not so many as earlier) returned to the room. I was pretty tired by this stage, but continued to listen, while starting to reflect on the day. I was also getting desperate for some solitude and some respite from the loudness of the amplification and the constantness of so many people, but I stayed until the end.

I’d vaguely hoped to see the book displays on the way out when it was quieter, but all was packed away when I returned to the foyer, so I was never able to access them, so I just left. Fortunately the car was close by, and as I got in and locked the doors behind me I felt a certain sense of achievement that I’d done it. I’d just sat and listened to a session about how kids store up all their tension throughout the school day then go home and could release in by smashing up the recycling (a strategy of sorts I suppose), I felt like this was the end of my school day, but instead of smashing up the recycling I contented myself with the calming effect of beautiful gear changes, slotting into gaps in the traffic when changing lanes, getting out of town from memory, going back via the motorway, and feeling the freedom of being back in my own space.

I finally got to eat that day when my husband returned home from work via the chip shop! And I did have several glasses of what might be termed “maladaptive strategy” to go with my chips!

Works In Progress

I’m aware that blog posts have been a little erratic of late, and it might seem that I’m doing less writing or losing interest. In fact, that’s not the case at all, and what’s actually happening at the moment is that I’m trying to work on a couple of projects, both of which will probably extend to multiple blog posts, and both of which I really want to get right and be as accurate and clear as possible, since both are important for different reasons.

One is the story of my final autism assessment, the one where I received my diagnosis. I’ve started work on this, but remembering back and trying to write exactly what I want about it is taking quite a lot of energy and is quite hard work, so it’s not happening overnight. It’s more of an “end of term assignment” than “this week’s homework”. It might take another week or so for me to complete this project.

The other is a write up of what happened on Tuesday of this week when I attended the National Autistic Society’s conference on Autism and Mental Health. I’m trying to write up the experience and what I learnt (I took 11 pages of notes), and my thoughts on the day as a whole. There are many of these thoughts and sorting them all out into presentable form will take a while. I’m currently working on them as fast as I can.

Furthermore, as is obvious from the preceding paragraph, I’ve actually been out in the world again doing things quite a lot recently. I’ve been to the conference, met up with a new friend, played quite a lot of music, and am also meeting up with old friends over the coming weekend. Furthermore, I’m starting to organize my life and plan for the future a bit too and have started thinking about goals and plans for the next few years in a way that I haven’t done for a very long time. Most of these things are taking a massive amount of social, sensory, and executive functioning energy and I’m needing to undertake a certain amount of self care (downtime in between, remembering to eat, etc) in order to cope with my increased activity levels while still continuing to recover from burnout. It’s a tricky balance to achieve.

So I’m still here, still working on these things, and still trying to do a good job of giving information and my viewpoint and doing so as clearly as possible. I’m still also working on tidying up this blog and making a complete list of posts and so on, but all this will take a little time, even though I’m very very determined. I’m doing, as I always do, my absolute best with it all.

But I’m only one human with a rather erratic mind, and I’m acutely aware that I need to protect my mental health so I don’t relapse, so it might take a few days for me to catch up on everything I’d like to say.

I’ll get there!