Changing the Face of Autism – Video
Posted on September 16, 2015 Leave a Comment
Introducing Changing the Face of Autism: Here Come the Girls. A unique documentary looking at the female autism profile, filmed by females on the spectrum.
ARCHIVED – Individual differences in autism
Posted on September 7, 2015 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
I think the fundamental problem of why we cannot understand the difference between males and females with autism is because we look at the condition as a overriding layer of a person’s self, and do not consider that whilst this does colour a lot of our thinking and behaviours, there is still the influence of personality, external inputs such as society, gender, past experiences, birth order, star signs, past lives (too far!?).
The point is we are all individual and unique already, and the autism mixes in with that. For example, when you see two people experiencing depression they may appear nothing alike. One may be bed bound, refusing to eat or talk, they have completely given up on life. Another may be found sobbing loudly at work as soon as anything goes wrong, telling people she’s just met about the Prozac her Drs recently prescribed her and how her therapist thinks it’s due to her mother’s emotional neglect. Yet there are also people who you wouldn’t even know had depression, they externally have not changed in the slightest. What makes people react so differently to the same illness? It is unfair to say it is due to severity, often those who commit suicide from depression are the ones you did not even suspect had any problems at all.
What it comes down to is individual personalities and experiences. The extravert who loves to be around people and who has never experienced rejection may be more likely to sob in public and not fear being seen, whilst the introvert who has been rejected in the past may keep their illness completely hidden, believing they are stupid to feel this way. Whilst we consider conditions like depression an illness, there is a similar affect with all psychiatric, developmental, and neurological conditions. This is why we become stuck with the very strict criteria of what autism is and what it looks like. We have a set off core symptoms that should be found in anyone with autism (social communication problems and restricted and repetitive behaviours), our mistake is to believe that these should look the same in everyone. It would be a much easier diagnosis if they did, but can we say that just because someone makes good eye contact they cannot be autistic? No, because there are many factors that make people more or less prone to make eye contact. The impairment is with social communication as a whole, and this may be something a person struggles with internally more than externally. For example someone with autism may really struggle to make small talk with another individual, but may have learnt ways to introduce themselves and keep a conversation going. It may be painfully awkward inside but outside not noticeable, that doesn’t mean the impairment isn’t there. What happens if you get an extremely extraverted autistic person? Will this look the same as an extremely introverted autistic person? What if you have an autistic person who has 5 brothers, compared to one who is an only child? Are they able to socialise better with their peers and be less rigid and self-orientated? The point is that impairments can be expressed in hundreds of different ways depending on an individual.
So when we compare males to females with autism, are we really looking at individual differences and how these play a role? If we take the Extreme Male Brain Theory, which attempts to summarise autism as an extreme form of the male brain, whereby individuals on the spectrum are quite low empathisers and high systemisers, we see a very set way or viewing autism which does not allow for individual differences. Instead of viewing autism as an extreme form of the male brain I would argue that autism is more a extreme hyper focussed selective brain. If you test mainly males for an extreme male brain, then of course you will find many have an extreme form of maleness, because they become hyperfocussed in their interests, and as they are men these will mostly be male orientated. So if more males are systemisers who like physics, then for sure autistic males will be even stronger systemisers who obsess about physics. If we look at the common obsessions females with autism have, they look completely different to males. Females with autism often obsess over soap operas, books, animals and psychology. It could therefore be said that autism is an extreme form of the female brain too, when actually autism is just an extreme brain. I am often surprised by just how different two people on the spectrum can be, and in my field of research and work come by a really diverse mix of people with autism. What binds them all is their similar difficulties in socialising, and the extremeness of their obsessions and sensory stimulations.
It is not helpful to keep trying to box autism more than it already is. No two people’s brains with autism look exactly the same, just as no two people’s without autism do. When we assess for autism we must look beyond the physical manifestations of the disorder and stereotypes we have all been fed to make our lives and work easier. We all respond to the world differently, and just because a person has autism doesn’t mean they don’t have their own personality and experiences too.
ARCHIVED – The Practice of Mindfulness: Why is it so stressful?
Posted on June 14, 2015 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
Walking has become an increasingly stressful activity for me of late. Not because it is the slowest mode of transport and my mind is constantly let down by the physical speed of my legs, nor because it involves walking past people and several awkward decisions about timing of eye contact and polite ‘hellos’, not even because my dog might attack the little child who attempts to stroke her, although the one that kicked her in the face deserves it. It is stressful because I am constantly having to attend to everything around me and pay attention to it. Every noise I hear, every tree I see or small animal that scuttles away, not to mention all the traffic and cars I have to attend to in the ‘present moment’. All whilst trying to stop my brain doing its normal wandering off. I use to walk to get away from the present, to get my dog out whilst I could digest my own head and LET it wander freely. I call it killing two birds with one stone. But ever since I found myself being stung by the Mindfulness bug, doing that makes me feel almost guilty. Am I indulging too much in my minds wanderings? Have I been doing it wrong all this time and making myself even more stressed in the process?
Mindfulness is an ancient Buddhist practice, which since the 1970’s has been remoulded into our Western clinical settings; you would be hard pushed now to see a doctor or therapist for mental health difficulties who does not at least slip in the idea of trying Mindfulness, in fact the majority will find that this is the main focus of their treatment. It has been so contagious that now even employers are subjecting their employees to courses on it, to improve general stress levels in the workplace and ensure everyone gets on harmoniously by being mindful. But what does mindfulness even mean? The definition of being mindful is “the intentional, accepting and non-judgemental focus of one’s attention on the emotions, thoughts and sensations occurring in the present moment”. It does not happen overnight, but one starts by consciously practicing it during walks or taking time out to think about it. So you stop what you are doing, you take notice of all the sounds, smells and things around you that you can see. You let any feelings or thoughts just pass through your brain without attending to them, you just be. Like a non-evolved chimp who ends up dead very quickly for paying no attention to the sound of a grizzly tiger heading straight for it. Sorry that’s wrong, he paid attention to it, but then let the feelings of fear bypass him whilst he lived in the present.
There are mixed reports on how helpful Mindfulness actually is, although if you hear about it through the official clinical channels you will only ever be told that it is evidence based and comes side effect free. For example Brown and Ryan (2003), who developed the Mindfulness Attention Awareness Scale (MAAS), say that dispositional and state mindfulness predict self-regulated behaviour and positive emotional states. In a sample of people fighting Cancer, they report that increased mindfulness over time correlates with reduced stress and mood disturbances. Pretty powerful stuff. Researchers at Oxford University found it can even prevent relapses in depression in 44% of cases. But delve deep enough and you discover reports and articles warning of the harm it can do. Especially when one attempts to learn mindfulness themselves or is taught it by an inexperienced clinician. It should be remembered that none of the people teaching the technique in clinical settings have spent time in Buddhist practice learning the correct method, for this takes years, even a lifetime. So what we have is a fast tracked version, a slimmed down practice that has taken out some bits and ignored the rest. For many the practice can be traumatic in itself.
Once I had grasped the principles of the Mindfulness practice I was to endure, from the self-help leaflet on it I had been handed by an inexperienced Support Worker, I had a few break through moments of real connectivity with my present self, but mostly I felt frustrated and like a failure. More than that, at times I felt like I was not even really there, that I was just a body moving along, nothing more than the trees I was listening to. Because of my Asperger’s I am often not really in touch with my body or my feelings. When I am it comes in a great big wave like the flood gates have been opened, but it quickly closes. This activity demanded I attend to what I could not reach, and in doing so left me with more issues and anxiety than I started with. A Consultant Psychiatrist from the Maudsley hospital has been investigating these adverse reactions, and the reports of many of depersonalisation, which refers to feeling detached from oneself as though you are watching yourself from the outside. It is not just those in clinical settings experiencing this either, the Buddhists practicing the full Monty mindfulness themselves have reported adverse effects, including changes in their sense of selves and problems with social interactions (imagine if you already have these issues to begin with!). It sounds like a good thing to do, that we should take more notice of what is in the present, but taking this too far and making it a priority, we also ignore another very important human process; being creative and letting our minds wander.
Jonathan Schooler reported that mind wandering increases during undemanding tasks, which makes for more creativity. When I walk my dog along the river thinking through all the thing at my desk I could not, I come up with solutions to my problems, I think of new ideas. I also process anything bad that has happened, instead of ignoring it and letting it sit and fester, I tackle it in my mind and think it through. Stuart Heritage suggested this week in The Guardian that we should instead embrace Mindlessness. This is a new wave of thinking that assumes our brains can take care of themselves without are conscious imput; we breathe automatically without thinking for a reason and have always done so, we do not now need to start interfering with that process. Mindlessness relies on gut feelings and mind wandering day dreaming, all the things Mindfulness has campaigned against. It certainly sounds less exhausting.
It is true, we should pay attention to what is around us. We should listen when people are saying important things to us, and notice beautiful wildlife and sights we have not seen before, but we should also let our mind do its own thing when it wants to, not fight it. Let it wander and explore and come up with solutions. For those of us on the spectrum this is quality time to decompress from all that is present that we find overwhelming, to focus on ourselves and let lose our creativity. This is what reduces our stress, not ignoring it for the sounds of passing cars and the hat colour of strangers.
“I want to learn to live in the moment… just not this moment. some other moment. Like a moment on the beach.”
Further Reading:
http://www.huffingtonpost.com/dr-judson-brewer/mindfulness-practice_b_4602714.html
http://www.theguardian.com/lifeandstyle/2015/jun/12/give-mindlessness-a-try?CMP=share_btn_fb
http://www.theguardian.com/society/2014/aug/25/mental-health-meditation
http://www.nhs.uk/conditions/stress-anxiety-depression/pages/mindfulness.aspx
ARCHIVED – The Politics of Autism: What the UK election means for autism
Posted on May 8, 2015 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
Whilst casting my vote in the General Election yesterday afternoon there was only one thing on my mind: Which party will better serve the growing autistic population in the UK? The Conservative, Labour and Liberal Democratic parties all made the same vague promises when prompted by autism advocates; improvements to teaching, work and better mental health services. However, with social care at its worst in a decade, it is vital the next government acts.
I do not profess to know a great deal about the politics of our country, my interest has grown in recent years as I have seen the shortfall suffered by the Welfare System first hand, and how disproportionately our mental health care services have been cut. At the start of the coalition David Cameron was quoted saying “In these time of tight budgets, we need to make sure the money we do spend is better spent. If we don’t we are failing disabled people and their families.’ I am yet to see any money being well spent in this area, or at least certainly not in all areas of disability; for those that are more hidden the age old problem of identification and acknowledgement remains. The mental health services have been filled with cheaper, quicker therapy in the form of IAPT, a solution no more efficient than prescribing plasters to deep cuts rather than stitches.
Today’s majority Conservative result was feared by many who are concerned by further cuts; 12 billion to the welfare system (The Independent). Not to mention the loss of parts of the NHS to privatisation, and further cuts to vital services, all thanks to the misguided ‘trickle-down effect view’, whereby aiding the richest will trickle down into helping those in poverty, without having to actually put money into helping the poor directly. But let’s not panic yet, because the Tory’s have made promises, and I’m yet to hear a politician who has lied. The National Autism Society (NAS) reviewed the Conservative Manifesto with relation to their policies for supporting autistic individuals in work and also improving access to health and social care, and found some specific intentions to improve this area.
In the manifesto the Conservatives have said they will aim to ‘halve the disability employment gap’, and they will do this by ‘transform(ing) policy, practice and public attitudes’. This seems quite airy fairy but the NAS has promised to follow it up upon their victory. This year has already seen some of the world’s biggest companies, such as Microsoft, promising to hire more autistic individuals with specific skills, and bids to match up creative skills with jobs in the autistic community.
Next on the agenda was the NHS cuts, with a promise to invest an ‘additional 8 billion above inflation to fund the NHS England’s action plan for the next 5 years’. This translates to improvements to mental health services, with shorter waiting times promised and thus improvements to autism diagnoses as well. With the right conversations being had between the government and autism advocators, there is some hope of real improvement.
A year ago in my city we have had a new center opened specialising in supporting individuals with autism. Unfortunately, it is left rather empty, apart from diagnoses coming through the door and the very occasional support group, mostly for children, it is redundant. If the new government does what they say, then we should see centers like this filled with therapeutic sessions and autistic adults also getting the support they need.
But it’s not just the Conservatives who can make this happen, we have to too. By telling people what we need, and campaigning for better welfare and support. Campaigns such as the NAS I’mOne General Election Campaign, and charities like the Ambitious About Autism have great ways to get involved and help bring about change.
I will leave you with a statement, which although is more factual that proactive, its awareness still fills me with hope: David Cameron: “A third of adults with autism have suffered severe mental health problems because they lack the right support”
ESSENTIAL Further Reading:
For a more detailed interview with David Cameron on Autism please read this:
http://livingautism.co.uk/article/235-david-cameron-interview
Links:
NAS ‘I’mOne’ Campaign
http://www.autism.org.uk/Get-involved/Campaign-for-change/Learn-more/Our-campaigns/Current-campaigns/ImOne-general-election-campaign-2015.aspx
Ambitious About Autism Campaigns
http://www.ambitiousaboutautism.org.uk/take-action/campaigns
References:
ARCHIVED – Sexism in female autism research?
Posted on March 7, 2015 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
When I started on my PhD voyage over 18 months ago I had to make a number of choices to refine my research topic. I have 3-5 years to produce some highly specialised and focused work, so it has to link and it has to be specific to my question. Along the way I have filled in numerous ethical approval forms, risk assessment forms and really had to consider the potential damage I could cause, even from a seemingly harmless questionnaire. But my aim is to help a neglected group of autistic individuals who want to be helped, how much controversy could there be?
The issue of sexism in research focused on females with autism never crossed my mind, yet has been brought up in past weeks enough for me to consider it a possible issue. Can we focus on only one gender in a non-sexist way, or is it sexist to exclude a group from analysis?
Sexism in autism research is certainly not a new concept, although usually the shoe is on the other foot. The ‘Extreme Male Brain Theory’ certainly had women like myself banging our fists on the table, most of the research supporting it were extremely male biased with barely any female participants. But then again the condition affects males more than females right? Wrong. To understand autism we have to understand how all different types of people experience it. So far we know a lot about males, but we have hardly any research of how it manifests in females. Ideally we would see research that could deal with autism rather than gender, but how can we conduct that research when the tables haven’t been balanced? Is it not discriminatory in itself to try and hinder this quest for equality and instead of celebrating the knowledge it may bring to all, shut it down with the stamp of ‘sexest’?
The statistics are loud and clear, only one fifth of girls are diagnosed with autism by the age of 11 compared to over half of boys. Girls with autism have more mental health problems, are diagnosed later in life, often misdiagnosed and mistreated, and often the victims of sexual assault and abuse. That is not to say that males with autism do not also suffer from these difficulties, but in research we speak of groups and norms, it is not possible to pick out and help each individual but you hope that you can generally help many people in your target population.
The second part of this question: Is it sexist to claim there are differences in behaviour between the sexes? My research is based on the theory that females are better at hiding their autistic impairments and in many cases masking it. This is based on the numerous first-hand accounts of females on the spectrum who were not diagnosed until later in life, compared to the many more numerous reports of male typical autism. Note that we only talk about typical behaviours, this does not mean everyone but instead refers to the majority.
The very reason women are masking their impairments is because of the male biased view we have, which is ambivalently sexist towards them. Research has found parents are more concerned with females who have difficulty socialising than the parents of males with the same difficulties, and as a result females reported they had more problems too. Because of this female specific issue to having autism a different set of coping mechanisms naturally arise to those of males. Again, some males may also experience this, but we are just discussing the majority of cases here.
If we look at cases of depression, which are often heavily female biased, we see a slightly different manifestation of the illness in males as a result. There is more reluctance to seek help, and more attempts at trying to cover it up, and, probably as a result, often more suicides in men. Is it sexist to investigate how males suffer from depression and how they can best be helped in different ways to females? Absolutely not and I would fully support this research.
Ultimately the main goal of any scientific research is to help a population, never to put another down as a result, that would be wholly unprofessional and counterproductive. Measures are put in place to insure discriminatory behaviour does not occur, equality is given to all research subjects irrespective of gender, or indeed race or other dividing factors. However, it is important to accept difference between groups if we are to learn anything about anything. Fundamentally the core impairments are the same for all those with autism, and the diagnosis procedure and support framework the same too. But there are a large number missing out on this and that doesn’t seem fair, we must understand why it happens.
ARCHIVED – Having a dog can improve social skills of autistic children
Posted on January 20, 2015 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
This is Skye.
I got her 5-6 years ago, a time when I was very much struggling with anxiety and depression and finding it difficult to put myself out there. She is completely untrainable, bossy and loud, but for many reasons she is also a super dog. Since I got her I have overcome much of my anxiety, and can these days leave the house with little fear. I now have a job working in schools with children, mostly special needs, thanks to the assertiveness and communication skills I learnt from her. Of course other people in my life have contributed to me tackling my lack of confidence, but it was her that kick-started it all. She was by my side when I nervously left the house to start walking her as a puppy, and then when I had to stop to talk to people I did not know. She taught me a lot about affection and not fearing contact with others, and also assertiveness at believing in myself as the boss (she will adamantly disagree). The reason I am telling you about her is because a recent study has found scientific evidence for dogs helping children with Autism Spectrum Disorders. Carlisle (2014) conducted a telephone survey of 70 parents of children with ASD. Those children who had any pet had greater scores in assertion, but those specifically with dogs had greater social skills overall. Not only this but strong bonds were apparent between the children and their dogs.
As I wrote previously in my blog post ‘Autistic Man’s Best Friend: The connection between pets and autism‘ this bond may be due to the ‘…simple nature of an animal’s behaviour. They do not demand from you emotionally and they are unconditionally affectionate. In many ways they are a living system, like a conscious Furby; they get hungry, you feed them and they are happy again. They cannot speak to you or understand what you are saying, so there are no chances of social faux pas’ or miscommunication. When an individual with autism may struggle to make friends, and find themselves socially isolated because of their social and communication impairments, a pet can provide unconditional companionship. I believe the relationship between man and animal goes beyond this companionship, and that for those with autism there is a special affinity which draws them to their pets on a much deeper level.’
Article Links:
http://link.springer.com/article/10.1007%2Fs10803-014-2267-7
http://aspertypical.com/2012/11/06/autistic-mans-best-friend-the-connection-between-pets-and-autism/
ARCHIVED – My Age of Autism Anxiety
Posted on December 18, 2014 Leave a Comment
“What is anxiety?” was one of the top Google searches of 2014. Anxiety affects almost everyone at some time in their lives, from pre exam jitters to full blown can’t leave the house agoraphobia and panic attacks. We can all relate to some extent to the physical pit of your stomach nerves that run like spikes through your body, so it may come as a surprise to learn that anxiety as a disorder is very much a man-made concept. Fear is an innate state which drives most animals to survive, but in humans this takes on a life of its own. In fact the term anxiety disorder only came about after the drugs intended to cure it were discovered as a by-product from other treatments (Stossell, 2014). From this point onwards we were sold anxiety as a disorder to be cured, an affliction of the modern mind. After all, what really is the danger of leaving one’s home? Now drugs can treat specific types of anxiety, Propranolol for social anxiety, Sertraline for panic, Fluvoxamine for OCD, the list is endless. But it seems we are missing something here, because it does make sense why someone may become agoraphobic, for our cavemen ancestors would surely have survived longer if they stayed close to home, much like our snake fearing and height fearing ancestors. Anxiety is what kept us alive. Studies have shown the reckless behaviour of individuals who lack fear, and indeed these survival phobias are hereditary (Menzies and Clarke 1995). With an involving world it seems that the fears which drive our survival have changed also, and are no more man made than those which drove our ancestors. The only difference being is that we can help those who have become so afflicted they can no longer function and it is detrimental to their survival. We are not always the best regulators of our emotions and instincts.
This is all the more true for autistic people, a population in which many are categorized as having some form of anxiety disorder. However, it is fair to say that the quality of this anxiety can be really quite different. I have suffered with quite a relentless anxiety since I can remember, more than chronic, it is ingrained. It took on many forms, each as stubbornly untreatable as the last. Out of nowhere they would pop, and then just as quickly as they came they would disappear, ready to wreak havoc in some other form. It started when I was three and could not bear to be separated from my mother and became what has since been termed ‘selectively mute’. In public my mouth would freeze and there were only certain people I would speak to. In silence I would listen to the register being called out at school, not saying a word no matter how many times my name was called. I would like to be able to explain to all those worried parents out there with selectively mute children why I could not speak, but all I can remember is the great pressure that was put under me to speak, and how this would make me even muter. I eventually naturally overcame this, but throughout my primary schooling developed several odd phobias, experienced my first panic attack and developed quite severe hypochondria leading to obsessive hand washing. I spent my later primary school years solely preoccupied with fainting, and would do everything in my power to prevent this from happening, which mostly involved going home sick from school if I knew any lengthy standing was involved. By this point I was also washing my hands so often they had become scaly and sore, as soon as I touched anything, it had to be washed off. Again, as suddenly as it came this also went. I do not remember an epiphany moment of the anxiety lifting, nor did I receive therapy or drugs to make it shift, instead it just gradually left my conscious until one day I realised it was no longer there. It didn’t take long for the rebirth, this time in the form of paranoia and fear of what others were thinking of me. Convinced someone was watching me, everything I did and said became a painfully conscious process. This was followed by Irritable Bowel Syndrome, thought to be caused by anxiety, followed by agoraphobia, panic attacks, food phobias and difficulty swallowing.
Despite this eclectic mix of anxiety disorders I was not diagnosed with anything specific other than General Anxiety Disorder, despite there being evidence of OCD, Psychosis, Social Anxiety and Agoraphobia. The reason being that unlike those who do suffer with those conditions, the manifestation and presentation of mine was quite atypical, and this is true for a lot of individuals on the spectrum. All these different anxiety conditions were driven by a much deeper anxiety, which is why they shifted their expression so often. My anxiety was developed from oversensitivity to sensory stimuli and difficulties with social communication, two key problems that come with autism. Many of the odd behaviours I developed were a coping strategy for a bigger problem I could not label at the time. Strangely, or perhaps predictably, since realising this my anxiety has calmed dramatically and now just sits as it is. Instead of being pelted by stressors the size and density of baseballs, they are instead small soft balls I can bat away with ease, and when they do hit they don’t leave half as much a bruise.
Moving away from my own story and weird analogies (it’s getting quite late), and looking at the differences in people suffering with OCD who are autistic versus those who are non-autistic, the underlying mechanisms driving the behaviours can be really quite different. If you imagine an individual with OCD who obsessively needs to turn a light switch on and off or he believes his family will be hurt or something equally as bad will result in not performing these actions, and compare it to someone who obsessively needs to turn a light switch on and off a certain number of times to calm themselves down, it becomes apparent that it is only the specific action and repetitive nature that the two have in common. Autistic people do things obsessively and repetitively that they enjoy or which gives them comfort, it is a result of a different anxiety than OCD anxiety. I recently attended a fascinating lecture on the topic by Dr Tim Williams (2014) who explained that the way to separate these two anxieties apart was to ask the patient if they liked their obsessions. Inevitably those that have OCD and do it because bad things will happen otherwise, despise them, and it is a great burden to their lives, whereas those with autism indulge themselves in them to cope. Having said this I certainly would not say I enjoyed my obsessive hand washing phase, although it certainly disappeared quicker than someone with actual OCD, and with no intervention.
So how do we treat an anxiety which does not behave like typical anxiety? The answer cannot be CBT (Cognitive Behavioural Therapy) alone. The answer may be drugs, but not always and with much more care. The key is to understanding the sensory and communication difficulties from which anxiety manifests itself. It is no use being taught how to overcome a busy shopping centre without actually addressing the fact that it is not the shopping centre you hate, but rather the unpredictability of the people, lights, smells, and noises; everything that a neurotypical would not need to think about. I have not found solace in meditation or yoga, I have found it mostly in acceptance of it being present in my daily life and understanding why it is there. I don’t necessarily challenge it like I ought to, like all the books and therapists say, I do what I can to soothe it instead. It is a bit like having a neurotic and volatile pet dog at your side wherever you go, I wouldn’t go as far as to say it has become my friend but I can certainly make it think it is.
I thoroughly recommend the following books for more information on anxiety:
‘My Age of Anxiety’ by Scott Stosell
‘Asperger Syndrome and Anxiety: A Guide to Successful Stress Management’ by Nick Dubin
ARCHIVED – CBT for Autism: Teaching the blind to see?
Posted on October 2, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
“How does that make you feel?” “How do you cope with that?” “What is it that makes you anxious?” “Are you Catastrophising?” “Have you tried mentalizing?” “Where do those negative thoughts come from?” “Are you avoiding?” “What is unhelpful about those coping mechanisms?” “Do you remember to breath?” “How about setting goals?”
After several years of dabbling in Cognitive Behavioural Therapy (CBT) one’s brain starts to chuck out these predictable mantras at opportune moments. Going to get on the tube – “what is the anxiety about!?” Worried about the Ebola virus – “is this catastrophising!?” CBT has often been described as a sticking plaster, useful for the worried well but just a scratch on the surface for anyone with deeper or more stubborn difficulties. The early research seemed to suggest this was the new miracle cure, more effective than Prozac, cheaper than psychotherapy. Everyone was leaving their Drs office cured of their depression and/or anxiety, adding to a growing nation of cognitively intelligent beings. Even hardened Builder’s started identifying their anxiety, learning relaxation techniques. What the health service and those pro CBT failed to tell you, was that the majority of those with actual depression or an anxiety disorder ended up returning to their Drs with recurring complaints; the techniques were wearing off. A revolving door has become a good analogy for these patients. Perhaps this is better than before the CBT era, where patients may have found themselves stuck in long term psychiatric outpatient care, or even in inpatient care, with little ambition of leaving in the near future. Most Psychologists (mostly those not associated with the NHS) do not consider CBT worthy of all this glory however, and studies have been produced showing these flaws and suggesting better therapies and more effective long term solutions. So this week I was surprised to learn that with severe cuts to the mental health service, and with the provision of new care pathways which places patients into neatly labelled boxes, the only therapy being commissioned in the NHS for those with depression or anxiety is CBT. Gone is the art and music therapy, the counsellors and the psychotherapists. Drugs and CBT can cure it all.
For those with little knowledge of what CBT entails and are new to this world, CBT is a ‘psychotherapeutic approach that addresses dysfunctional emotions, maladaptive behaviours and cognitive processes and contents through a number of goal-oriented, explicit systematic procedures’ (thank you Wikipedia). The language used to describe CBT is quite reflective of what the therapy is actually like to experience; cold, robotic and a little confusing. Goals are often set to overcome specific problems, such as a fear or busy places. Your therapist will talk through what makes you feel anxious, what sort of thoughts you are having, how those thoughts affect how you feel and what you do. You will fill in sheet after sheet with these sorts of questions, doing ‘homework’ outside of sessions to achieve an ultimate goal, such as going to a busy shopping centre.
So sounds like it might be helpful for some people? ‘Some’ being the operative word. For some others it can actually be more damaging, like for some autistic people. How can you give someone the tools to help themselves when they don’t have the mechanisms in place to actually use them? In fact research has found that this group struggles in particular with this sort of therapy, but why?
During my own periods of CBT I found the course too short, too much was expected in such a short period of time. I could not pin point my difficulties to goals, several I could and did achieve, but the deeper ones lay stuck in my autistically developed mind. My therapist would frustratingly and impatiently keep asking me why I felt a certain way, and I could never say. Why do I feel anxious today? I don’t know I just do, well I think I do. One of the impairments of having autism is that there is a sort of block between emotion and cognition. It is why many perceive us to have a lack of empathy, which we categorically do not we just sometimes having difficulty showing it or processing it. So you can see why teaching us ways to think less catastrophically isn’t going to really cut the mustard (odd phrase I will spend the next few minutes working out the literal meaning of).
The problem also lies in the unpredictability of emotions. I generally feel anxious in busy shops, but not always. Sometimes I feel empty in small empty shops. For my homework I could achieve the goal of shopping somewhere busy fine, a week later I might have a panic attack doing it again. Sometimes I might have a panic attack just sat at home watching TV. It is hard to understand where these emotions come from, and sometimes it is easier and best to just accept them as they are. If we cannot understand these things ourselves, how can we communicate them to others? With great difficulty, especially in a talking therapy with a stranger.
The frustration that comes with trying to understand oneself in a ‘neurotypical’ way can be pretty intense. I have admittedly needed further therapy to get over therapy that has exhausted my brain’s processing capacity! If something is going to help anxiety and depression related to autism then it needs to be gentle and compassionate. Two things which the NHS unfortunately cannot provide, making support for autistic adults extremely hard, if not impossible, to find. There is no pathway for individuals with autism spectrum disorders. Those at the high functioning end fall between the gap of learning disability and mental health difficulty, neither quite attending to specific needs. Fortunately there are some great private counsellors around who specialise in these areas, contact your local NAS centre to find out more.
I would like to hear more about your experiences if you have had any with CBT or with NHS mental health services, please leave a comment =]
ARCHIVED – ‘Don’t believe everything you think’: Accepting different realities
Posted on July 27, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
The hardest part of watching my Nanna fall deeper and deeper into a Parkinson’s Dementia is not the hallucinations she has or the alternative reality she has stepped into, it is the upset these hallucinations cause her. Two girls sitting in the corner who she worries and fusses over, are they eating enough? Are they cold? They just sit giggling and whispering to each other, ignoring her efforts to make conversation. She says she cannot cope any more, she cannot live this way. Because she fears what she is seeing is not real and it scares her? No, because the girls won’t talk back to her in her own house, she cannot live in a house where people ignore her. Who are we to say that this is not reality? It is her reality, she sees and feels it as real as I see these words typing out on my computer screen, definite and solid. In many ways I can understand her new reality, being autistic I feel like my own reality is some what different to others. Not so far apart that the vision is different, but perhaps slightly to the left a bit, a different angle in space and time. They see things quicker and clearer than I do, but my angle is more detailed; slower but finer. There have been times when I have felt so out of sync that I am slipping off the edge. How easy it is to lose yourself and the external world you stand in when you cannot feel what connects you to it. So busy absorbed in trying to understand others or in an activity that you forget where you left your body or what it felt like. It is often why people on the spectrum fear loud noises and strong sensory experiences, it distracts from their concentration of where they are trying so hard to exist.
When I cannot understand what I am thinking of feeling I detach externally, which is when the trouble starts. People with autism commonly hear voices that are not there and see people no one else can see. It is not Schizophrenia, it is why people with Depression often have similar experiences, when you cannot feel the world and its connections an imaginary voice is as a real as the person’s sitting next you.
I cannot describe the desolate loneliness these experiences bring. I often describe it as being held up by strings, and then having each of those cut. Losing gravity. Like you are walking across a bridge above a deep pit and suddenly the railings disappear. There are no edges or sides to anything. The world is a big open space to navigate without any supports hold you up . Nothing is attached. You are completely detached from all around you.
In The Compassionate Mind, Gilbert describes how we are the only living creatures to realise we are completely alone. Most animals are drawn together in common goals and communities. We are the only ones with a conscious to realise our own loneliness; in a healthy mind those thoughts will hardly disrupt your day. Surrounded by the connectedness of others all those happy chemicals like Oxytocin, which make living worthwhile. This is why many describe depressive thinking as being more realistic. It is not surprising why those who are depressed and/or have autism so easily lose the connectedness that makes our innate loneliness such a small consequence of being human. Loneliness is painful, it goes beyond depression, it is a pathological boredom that bores into your brain with such an intensity you can lose sight of reality, of future or hope. Yet it is also essential, it is what drives us to form bonds and communities, whilst allowing us the independence to make up our own minds and better ourselves.
Our reality is that our minds are too fragile to accept only one reality. We should never get lost in our own or believe everything we think. Asperger’s has certainly opened my eyes to perceiving others. In a moment of lucidity as my Nanna sat on the floor after a fall, she had gotten up to help her father, who she was seeing, from falling off his chair. She told me she knew we could not see what she saw, that we did not believe her. She said the Parkinson’s made her see things. She didn’t mean as a symptom, she meant that it had opened her mind to see things we could not see. She had been allowed to access this alternative world, that we could not experience.
ARCHIVED – The problem with Psychiatrists
Posted on June 23, 2014 Leave a Comment
ARCHIVED: Please note, whilst every effort has been made to update blog posts, this blog post has been archived and may present outdated and incorrect information and terminology.
I tread carefully around this subject in the knowledge that my own Psychiatrist now has my blog address. So for the purpose of maintaining his ego, which in turn maintains my mental health support, any personal stories I give are definitely about another psychiatrist I’ve had previously and not my current one who is the best psychiatrist I’ve ever had and none of the following relates to…
“You are an attractive girl, go out and get yourself a job in Claire’s Accessories” were the last words of wisdom I was given by a red scarf wearing Psychiatrist before he promptly discharged me. I feel the red scarf detail is relevant because A. I hate red and B. He was wearing it inside, which seemed odd. The problem I have always had with psychiatrists is their lack of in depth psychological knowledge, which seems to correlate positively with their medical doctor arrogance. I would not necessarily fully trust and follow a psychologist’s medical advice, in the same way I do not fully trust or follow a psychiatrist’s therapeutic advice. I am however biased towards the former having gone in psychology first rather than medicine. For those highly abnormal people who have never had to come into contact with either profession, the difference between the two is that a Psychologist is trained in Psychology and works with people on a behavioural and emotional level, whereas a Psychiatrist is trained in medicine and can prescribe drugs; debatably a few also provide some sort of therapy too. My openly critical stance of Psychiatry is, however, somewhat tongue in cheek; they do have a great value for many mental health conditions which psychologists sometimes cannot even touch. However, here is my manifesto of problems:
Problem Number 1:
You need to be cured
The very nature
of medical doctors are that they are working towards a cure. At the very least if they are not working towards a cure then they are working towards prolonging your life; in the Psychiatric world this relates to suicide prevention. Autism is often only brought to the attention of psychiatrists because of severe mental health difficulties and as a result autism can often be shoved aside as the secondary condition. It is now well known that many of these mental health conditions may have been triggered by the struggles of living with autism and as such understanding first and foremost the autism in the individual patient is vital. This brings me on to my next problem.
Problem Number 2:
You are one of many disorders
There are many categories you can fit into and many labels you will be given but ultimately you fit under the one umbrella term of ‘psychiatrically disordered’. As such a one size fits all approach should suffice. However, many of the treatments and plans given to other psychiatric disorders are inappropriate for those with autism. For instance, it is quite common for those with autism to talk to themselves and have strong bizarre beliefs, which does not neccessarily equate to psychotic or delusional disorders. Similarly it is common for those with autism to have quite repetitive and ritualistic behaviours and habits, which does not signal Obsessive Compulsive Disorder even though it may look like it.
Problem Number 3:
You must tolerate drugs
I have developed a pathological guilt complex due to my persistent drug intolerance and my need to give my Psychiatrists the faith that problem 1 is possible and problem 2 does not exist. But drugs don’t work the same in everyone, and autism is definitely not included in that everyone. As a whole we are more sensitive to chemicals, more prone to side effects, and need far lower levels of drugs than most. Combinations of drugs are a no no, and no matter how much you try, some problems just can’t be wiped away. You can ‘cure’ your depression but that doesn’t make social situations easier, you can ease your anxiety but that doesn’t stop change freaking you out. At what point do you stop and say ‘OK this is the maximum benefit pills can do for me’ before you end up trying every psychiatric drug and combination possible? Some of the side effects can even worsen or mimic autistic traits; twitches which turn into repetitive habits, agitation which turns into a meltdown.
Problem Number 4:
The Psychiatrists are in charge
Most teams are led by the consultant psychiatrist so all the above problems are pretty significant when your entire treatment is being based around these ideas. If you are lucky you will be pushed onto an anti-drug therapist or psychologist who has more experience with autism, but if you are not so lucky you may find yourself on a short CBT course not tackling any of your supposed problems and back to the drawing board.
Problem Number 5:
Most Psychiatrists won’t recognise these problems.
The good news is there are some pretty easy ways to tackle these problems and communicate better with your psychiatrist.
Solution Number 1:
They are human too
Egotistical maybe, but heartless no. They may be hard to decipher but they do actually want you to get better and live without them, so they will do their best to help. This isn’t really a solution, but it is good to keep in mind.
Solution Number 2:
Communication is key: write things down, bring someone along
One of the most common problems people have with their psychiatrists is miscommunication. For those with autism this is a particular problem. We may under report our feelings, when we do they may be misinterpreted, what we say is often not what we mean, and what we are being asked we have no clue. The obvious solution to this is to write it down, concisely. Psychiatrists speak in nice neat tables and graphs, so keep it simple and keep it visual. I have previously tried a mood table, a flow chart, typed bullet points and several others with varying degrees of success. Of course the other solution is to take someone into the consultation with you. This is especially important if you are prone to forget to mention things you deem unimportant or wonder afterwards how your psychiatrist couldn’t read your mind or pick up on something.
Solution Number 3:
Tell them how you feel
This seems quite obvious but you would have also thought it obvious for your psychiatrist to guess you are feeling down by seeing you cry – it doesn’t always happen. Don’t let them guess your state of mind, if you feel sad say it, if you feel worried say it. Think of all the things you don’t want to leave the consultation without having said or brought up, and just get them in wherever you can! And don’t be scared to say when something is not working, if a drug is making you ill but you have only been on it several weeks don’t be afraid to say ‘no, I can’t take that anymore, I need to try something else’. As much as a Psychiatrist wants you to believe they are making the correct choices for you, they are mostly educated guesses at best.
Solution Number 4:
Educate them
You have spent years learning how to fit in and you comply with everything that is thrown at you. They are paid to be there and to understand you, so don’t be afraid to throw some extra work their way. This, I think, is the most important tactic. If they know hardly anything or have little experience of autism, how can they ever be expected to get your treatment right? Many are possibly too busy for extra training or it isn’t their ‘specialism’. So take articles you have found, symptom lists from books, books with the relevant pages highlighted, google pages, research papers, anything that you think by them reading or knowing would help your cause. The only thing I would suggest is clearly highlighting what you want them to see, a whole book is likely to get put aside and forgotten about.
Solution Number 5:
Request to be referred
Armed with the knowledge of who you would feel could help you best, ask for it. Ask to see a Psychologist or someone who specialises in autism, don’t just sit back and assume you will be automatically passed to the best people who know about the condition. There won’t always be someone available but it is worth a try.
Solution Number 6:
Share information
If you have several people involved in your care then make sure there is communication amongst them all so you don’t have to keep repeating yourself, and if one understands you more they can inform the others what you need. Ask for a Care Plan or things to be forwarded on, take letters and plans with you to your other appointments. They should do this automatically but it is best to keep a check on it.
I write this guide with a lot of hindsight and there are a few Psychiatrists I have had where it would not have been possible to employ these tactics. If this is the case then you need a new Psychiatrist; if you can’t be open about the care you are receiving then you are on the road to nowhere. Now I will leave you with the most profound statement my psychiatrist has ever made to me: ‘Hannah, your life is a bit like the Truman show’ (I still don’t really get that but if I did I am sure it would be very helpful).
Dr Hannah Louise Belcher 