OCD-ACTION Annual Facilitator Day - Birmingham 2017

On November 4th, OCD ACTION kindly invited me to speak about autism at their annual facilitator’s event in Birmingham, UK. This is due to the rise in people with OCD asking them for advice who are also on the autistic spectrum. I spoke for around an hour to groups of OCD support groups from around the country, that are brought together each year in order to attend workshops and learn how to enhance the support they give to people with OCD.

I have been asked to publish the speech I made at the event. So here it is – Hope you enjoy reading it.

Here is the transcription of my presentation for the OCD-ACTION conference in Birmingham November 4th 2017.

Good morning everyone. Thank you for coming along today. Its great that we have the opportunity to spread some light on the subject of OCD and autism.I’ll be focusing quite heavily on the topic of communication in my presentation, because it’s so important to get some understanding of the difficulties people with autism are likely to have in this area.

I should start by saying that one of my worst nightmares would be standing in front of a room full of people, whilst speaking fluently for any length of time. Speech does not come naturally to me. It never has. But I have an excuse. It’s a thing called autism. There is a growing realisation that people with autism can also have mental health conditions such as OCD, anxiety, and clinical depression. This realisation is not, however, news to me. I have also had clinically diagnosed OCD for as long as I can remember. If I needed any further anecdotal evidence to back the idea up that autism and OCD can co-exist, I see clear signs of OCD in the autistic people I work with at the National Autistic Society. Unfortunately, these symptoms are all too often considered to be no more than random autistic traits by medical professionals and simply dismissed. I speak from personal experience when I talk about the massive disconnect between mental health services and effective mental treatment for people on the autistic spectrum. According to the National Autistic Society website, approximately 65% of autistic people suffer from mental health problems. I am and always have been one of those statistics. All too often, GPs psychologists and psychiatrists, although well-meaning, generally do not seem to have enough understanding of autism to provide effective mental health treatment for people like me. Since my autism diagnosis, I have been told things like ‘It’s because you’re autistic,’ This is strange because before my autism diagnosis, the same doctors used to tell me, ‘It’s because you have OCD.’ … So I can’t have both I ask? It’s not easy to describe one’s life long struggle with the challenging combination of autism, OCD, clinical depression and anxiety. I’ve always found it embarrassing to mention that I have these conditions. Whilst there have been some extremely dark times, I don’t want to come across as being a victim, so I will try to keep this light, and perhaps even include a happy ending. But firstly I’ll give a reasonably brief, and hopefully not too boring summary of my journey from a maladjusted seven-year-old child, to a reasonably well-functioning adult with a wife, two beautiful daughters, and a dog.

SO WHAT LED ME HERE TODAY?

In 2008 I was diagnosed with autism of the high-functioning variety, I also have a clinical diagnosis of OCD. This I received many years earlier. And without wishing to boast… I also have a diagnosis of auditory processing disorder – something it could be argued, that with most autistic people comes as standard. Auditory processing disorder means that I struggle to process things people are saying to me, especially when there is a lot of background noise. Without my lifelong medications for anxiety and depression and OCD, I probably would not be able to get out of bed each day. So with all of this going on, you may wonder how I was ever able to stay married for thirty years and sustain a reasonably successful career in the arts and media for so long. Well, In the words of a childhood friend, ‘It’s a miracle you got this far, no one ever thought you would!’ Thanks, I know you meant this in a caring-sharing kind of way. But the reality is that some days I really do struggle to get out of bed and face the world. And I know that without the medication for the anxiety and OCD, it’s quite possible that I may not be in a fit state to ever leave my house. I know this, because I have tried to come off my medication a couple of times, and it did not end well. I’ve come to the simple and pragmatic conclusion that whatever gets me through the day – gets me through the day – as long as it’s legal of course. Having said that, if I could find a way to function without massively boosting profits for the pharmaceutical industry, I would. These days, I aim for symptom management as opposed to finding a complete cure. My memories of having a disorder that is both compulsive and obsessive dates back to when I was around 7 or 8 years of age This mainly took the form of counting and repeating actions over and over again. 

These repetitive actions had to be performed an even number of times before I could move on to the next task. I didn’t know this was called OCD until around 2004, and that treatments were available. I spent my childhood as both an inpatient and outpatient at Great Ormond Street Hospital in London, and can boast about being one of the first children to stay in the new psychiatric wing that opened at the beginning of the 1970s. In the mid-1960s before the phrase autistic spectrum disorder had been invented, many children like me were not diagnosed with autism, but instead with infantile schizophrenia, and medicated accordingly. This included Lithium and Valium. But nothing seemed to work. No one could understand the strange psychological disorder I appeared to be suffering from. The other problem I faced was speech. According to my mother, I did not begin to speak until I was six years old. I remember the weekly visits to the speech therapist. I remember playing with toys in the sandpit and drawing pictures whilst the therapist looked on and made notes. At the age of 11, the doctors told my parents that, ‘of course, he’ll have to be put in an institution, and he’ll probably never come out.’ They said I was abnormal and emotionally disturbed. But instead of an institution for maladjusted boys, I was sent to a progressive education boarding school in West Dorset. 

I stayed at the school for six years, emerging as a much more functional seventeen-year-old in 1976. The forty-five years leading up to my autism diagnosis in 2008 had been a story of severe anxiety, OCD, untreatable depression and something else… there was always something else that I could not quite put my finger on. Fast forward to the spring of 2008, and It was day one of a course of Cognitive Behavioural Therapy for my OCD, when the psychologist suddenly said ‘I think you may be on the autistic spectrum would you like me to carry out a diagnosis? She continued without mincing her words,  ‘You’ve either got autism or your cognitive impairments are caused by some form of brain damage. I rushed home after the session and typed high-functioning autism into my best friend Google, and finally… after all those years, I’d found that something else… the thing I could never quite put my finger on. It was called autism. Now everything made sense.Around 6 weeks later it was official. My autism was finally confirmed, and yet another item was added to my ever-expanding list of conditions.After the autism diagnosis, I was elated and full of hope. I naively thought that now I knew what the problem was, a team of highly trained specialists would automatically spring into action, and fix me… I was of course, wrong in this assumption.I quickly learnt that autism is not a fixable condition. And to make matters worse, all of those support services I assumed would swing into action… well, there were none to swing into action. 

The reason I have taken time to describe my lifelong struggle with some quite severe mental health problems, and autism is that my story is far from unique. Many visitors to this website from across the world have told me how they too arrived at an autism diagnosis after a lifetime struggle with untreatable anxiety, depression and OCD, So it’s quite possible that if you are seeing older adults with autism and OCD in your support groups, the journey may have been quite similar to mine.Before my autism diagnosis, I’d somehow managed to sustain a long career in the music business, and also worked for many years as a freelance corporate filmmaker for one of the biggest advertising and marketing agencies in London. But I always struggled with the social aspects of the job, and after my autism diagnosis, I decided to leave the pressurised world of advertising to work in an area that I felt more comfortable with. I tore up my old life; my old career, and rebranded myself as the openly autistic person you see today. A few months after the diagnosis, I became a specialist tutor for the National Autistic Society in London. The rest of the week I work as a film maker for various charities, the NHS and the London boroughs of Barnet, Richmond, Kingston and Chelsea and Kensington. The films I make for these organisations are largely about the effects of mental health difficulties on young people, and how they can access help.

In 2010, I started the website adultswithautism.org.uk because I could never find good information for adults on the autistic spectrum. At the time, most of the information online was mainly directed at parents with autistic children, and therefore not entirely helpful to me. We are now part of a growing worldwide community of autistic adults who support each other and share our experiences on a daily basis.Whilst I still find it embarrassing to be open about having autism. The day after my diagnosis in 2008, I made a conscious decision to tell people and be open about it. There really is something quite liberating about being honest with yourself and also with other people. So that, in a rather large nutshell, is how I ended up here today talking about autism and OCD.

What Is Autism?

This is where I attempt to describe stuff that many of you will already know, in a way that doesn’t sound like I’ve swallowed the instruction manual. Autism is somewhat dryly described as a ‘complex developmental condition. Also known as Autistic Spectrum Disorder or ASD. The condition is present at birth, although depending on the severity of one’s symptoms, can go unrecognised till much later in life. This is largely because parents, teachers and child-care professionals may not spot the subtle symptoms displayed by people with milder cases of autism – anecdotally, I think this may have been especially true with girls on the higher end of the spectrum. These less severe variants of autism are known as Asperger Syndrome and High Functioning Autism. Although since the publication of the DSM 5, I believe Asperger’s has been rolled into the overall description of ASD. People that had a diagnosis of Asperger Syndrome will, however, keep their Asperger Syndrome. Although everyone on the autistic spectrum has to meet the same diagnostic criteria, each individual will largely display their symptoms in a unique way. This, in part, is due to the influence of personality traits, environmental factors, and other co-existing developmental or psychological disorders. Many undiagnosed adults struggle through life, employment, and relationships. They are very likely to have suffered a range of mental health conditions since childhood, before arriving at an autism diagnosis in their 30s, 40s and even 50s. The autistic spectrum encompasses a vast range of abilities and disability: from people who are unable to live independently, to highly successful software developers, artists and entrepreneurs. This adds to the complexity of defining strategies to help people with autism manage co-morbid conditions, such as OCD and other mental health conditions. Historically, around four times as many males as females were diagnosed with autism. But in recent years the ratio has closed, and many more females are now being diagnosed.

Some Common Misconceptions about Autism:

Everyone with Asperger Syndrome is a computer geek – not true.

Everyone with autism is a savant with incredible superhuman abilities -unfortunately not true.

Autism is caused by immunisations – controversial, but not true, autism existed before immunisations existed, it just wasn’t defined as autism.

Everyone with autism has a global learning disability – not true. Although some may have specific learning difficulties, like dyslexia. My specific learning disability is auditory processing disorder. 

Autism can be ‘cured’. This is not true. How can a developmental disorder be cured? But it can be understood and perhaps managed more effectively.

People with autism never make eye contact. This is not always true. Some of us do, some of the time, some do all of the time, some do not any of the time. There are many variations in the way people display their symptoms. For example, there are people on the spectrum who cover their ears when they hear a police siren, while others may not be bothered by loud noise. To further illustrate the range of differences that exists across the spectrum, I’ll tell you about a few people I know and work with at the NAS: Philip is a twenty-five-year-old with autism and learning difficulties. Because of his physical strength, Phillip’s mother is unable to care for him at home. As a result, he has lived in a residential home for seven years with other autistic people. Whilst Phillip can hold a basic conversation, his use of language is limited. Phillip has great difficulty following instructions and often takes up to five minutes before he is able to respond to a question. Jamie is a twenty-four-year-old diagnosed with Asperger Syndrome and Bipolar disorder. He lives at home with his parents and is able to travel independently on the buses and trains. Although Jamie has a well-developed vocabulary and general knowledge, he would be unable to cope with any form of employment. Jamie attends a local day centre for people with autism where he is able to take part in various activities and learn social skills from a team of trained staff. Jamie enjoys Kart Racing and music. He has a great sense of humour and enjoys the company of others. At times, his Bipolar Disorder appears to amplify his Autistic symptoms. This results in high levels of anxiety. Lucy is a thirty-two-year-old executive in the financial industry. She has been plagued with bouts of anxiety, depression and OCD from early childhood. Along with the responsibilities of a high-powered job, Lucy is a wife, and mother of two young children. Despite her achievements in life, she has always felt a “strange disconnectedness” to the people around her. Especially at work where she is generally thought of as being, “distant, aloof and too honest,” by her colleagues. During a bout of particularly bad depression, a psychologist came to the conclusion that Lucy had Asperger Syndrome. Anna is an autistic nineteen-year-old. She also has severe learning difficulties and epilepsy. Anna needs constant, one-to-one support so her basic everyday needs can be met. Communication with Anna is achieved mainly through sign language and pictures, as she has limited speech.

So How Does Autism Feel For Me?

I would like to read a chapter from my book – looking for normal (Released mid-January 2018

AUTISM STREET – A short poem. I would like to walk along Autism Street, where everyone goes in the same direction as me. On Autism Street, pedestrians would travel along tracks with predetermined routes, from which they could not stray. Police sirens would be silent on Autism Street, and their flashing lights dimmed to a glow. I wish that every pavement was free from the clutter of humans, and their chatter on phones. Just like the one on Autism Street. Imagine this; You’re walking along a busy high street. You see the wheel of a car as it flashes past, the arm of a person walking towards you, and the furiously wagging tail of a loudly barking dog. Question: What colour was the car? Did the arm belong to a male or female? And which breed of loudly barking dog was on the other end of that furiously wagging tail? Well if you have my brand of autism, you may not have answers to any of these questions. Welcome to my world. The world of unconnected bits of things, and dots that can never be joined. The differently wired structure of my autistic brain robs me of the ability to see the whole picture. Instead, I see life through a telescope. A tightly cropped perspective that ignores the surrounding context. I perceive the objects in my field of vision as a random collection of fleeting pictures and feelings, none of which relate to each other, or to me. So, what does this mean in practical terms? Well, a friend recently described my problem-solving abilities like this: ‘Steve is more likely to spend all day earnestly smashing a hole in a brick wall with a hammer so he can leave a room than he is to realise he can simply walk through the open door like everyone else.’

Yes, you’ve probably guessed it, if I’m famous for anything – it’s missing the obvious. The name of this particular cognitive dysfunction is Weak Central Coherence. This is a term originally coined by the ground-breaking autism researcher, Dr Uta Frith in 1989. Her theory explains why people with autism struggle to integrate all of the necessary bits of information into a single unified whole. There are a few benefits in seeing the world through such a tiny lens, but generally, these do not offset the challenges we face. Let me tell you about an acquaintance of mine. I’ll call him Bob – a stereotypical Aspergian geek who writes computer software for a living. He locks himself away for hours on end, perfecting every single line of code as if his life depended on it. Bob is a genius, but at just one specific thing. Practically every other area of his life can best be described as chaotic. Bob is unable to form friendships, and finds it excruciatingly uncomfortable to sustain more than a few seconds of eye contact. This suits his co-workers fine. They know that if he does catch someone’s eye for even a second, he’s likely to bombard them with a hundred and one facts about an obscure 1980s cartoon character, or his other passion; London buses 1990-2012. The backpack that never leaves Bob’s side, contains his entire picture collection of London’s red double-decker’s from that particular era. Each one is carefully catalogued by its route number, and age of manufacture. Bob tells me that the number 67 bus from Parsons Avenue, actually used to travel along Heath Road, but due to the recent cutbacks, this route is now covered by the number 75 which only stops on weekdays between the hours of 10 am and 4 pm. I’m always tempted to say, ‘that’s fascinating Bob,’ but this would only encourage a further onslaught of interesting facts relating to the 34 from Vicarage Lane to Waverley Gardens, and the extra three-minutes of journey time due to the new one-way system in Windsor Drive.Bob finds comfort and certainty in the detailed structure of things, and in facts, figures, and the predictability of inanimate objects. Like me, Bob’s tendency to get lost in the very small, far outweighs his ability to form a reliable overview of the very big. It’s all about perspective, or in my case the lack of it. Autistic people like me and Bob just cannot seem to see past the end of our own noses. If only I had the grand, all-seeing vision of a Richard Branson, or a Steve Jobs RIP… just for a day… just to see how it felt. In fact, if I had a pound for every time I heard a neurotypical person make the annoying comment, ‘Everyone’s a bit autistic,’ I probably would be as wealthy as Richard Branson or Steve Jobs RIP. It’s important to say that Weak Central Coherence is not something you either have or don’t have. Practically every aspect of the autistic condition happens on a sort of sliding scale of functionality. And this is where things get complicated. So Bob, despite his remarkable ability in the field of computing, has very poor social skills. I, on the other hand, have slightly better social skills than him, but due to other cognitive dysfunctions, would never be able to remember the names of his beloved Star Wars characters, and have zero interest in London buses other than the one I’ve been waiting for, in the rain for twenty-five minutes. I am particularly weak in the area of speech and language processing, and so is Bob, but for different reasons. He is able to catch every single word he hears but will misunderstand its context. I, on the other hand, am much better at judging context, but completely hopeless at retaining any information in the first place. Even though we share a diagnosis, and quite enjoy each others company, our conversations do not have the ebb and flow typical of a neurotypical interaction. We talk at each other for a couple of confusing minutes with virtually zero eye contact from either of us, and then he’s gone.A conversation with Bob may go something like this: Me: ’Hi Bob, how are you today?’ Bob: ‘Did you know that Captain Kirk’s kiss with Lieutenant Uhura on the Starship Enterprise in 1967 was the first interracial kiss on TV?’ Me: ‘Ummm… please can you repeat that Bob, I didn’t quite catch what you said?’.Bob: ‘OK then, see you later.’Me: ’Oh… goodbye Bob.’  

COPYRIGHT Steve Slavin 2017)

The strange brew of OCD and Autism I would like to read another short section from my book Looking for Normal (Released mid-January 2018. This is about the time when I was around nine years old, playing football for my school team. And under the guidance of our football coach – the no-nonsense Mr Phillips from Wales. This highlights the speech and language processing problems, faced by some people on the autistic spectrum, and how they combine with symptoms that either look very similar to OCD, or quite or quite possibly are symptoms of OCD.Mr Phillips was a difficult man to impress. Now in his role as football team coach, his face progressed gradually, through every shade of pink, whilst shouting angrily from the sideline. his booming Welsh voice. ‘YOU’RE NOT WIDE ENOUGH SLAVIN!… GET OUT TO THE RIGHT!… PASS IT OVER THE TOP!… C’MON BOY!… GET WIDER… NO, NO, NO!.. I SAID WIDER SLAVIN – WIDER… WHAT PART OF WIDER ARE YOU NOT UNDERSTANDING!’ Actually, I did not understand any of Mr Phillips’ aggressively delivered tactical suggestions. What was I supposed to be wider of? Just what exactly was an acceptable amount of wide? If only I knew where wide was, I could go there and perhaps he would stop shouting at me. I was now drifting from one, wrong position to an apparently even worse – wrong position, like a lost sheep trying to find its way home. Mr Phillips – in his skin-hugging navy-blue nylon tracksuit, with white go-faster stripes on the side of each leg – was now yelling, ‘GET TIGHTER…NO SLAVIN, I SAID TIGHTER…WHAT PART OF TIGHTER DO YOU NOT UNDERSTAND!’  So now he wanted me to get wider and tighter I was utterly confused and could not contain my anxiety. I’ve often speculated on whether the anxiety caused by Mr Phillips – the overly enthusiastic football coach – was at least partly responsible for the onset of my Obsessive Compulsive Disorder at such a young age. It would explain why I’d developed a compulsion to take an even number of steps before I could cross the white lines marked on the football pitch. Four steps seemed to be the best number, but two would suffice if I was in a hurry. Two sets of two was OK but three sets of two was not. Having three in the equation would – in my imagination – mean that something really bad would happen as a result. Adhering to these self-imposed rules was exhausting. Running across a football pitch now required a complex set of calculations, balletic footwork and quick decision-making; Should I attempt to cross the halfway line by taking four small strides? Or risk falling flat on my face by tacking two really big ones?  Mr Phillips never asked why I found it necessary to perform such intricate footwork when chasing the football. I assume that at some stage, he would have been made aware of my classification as a ‘less than normal child.’ At least he was no longer shouting incomprehensible instructions at me from the side of the pitch. But now my compulsion to count had spread to other areas of life. Now I also needed to swallow an even number of times before I could perform an action. For example, counting to two, four or eight before stepping onto the next paving stone. This often produced the strange spectacle of having one leg suspended in mid-air until I could summon up another set of two swallows before I could safely touch down without something terrible happening to me or my family. At home, I counted the tiles on our bathroom wall whilst heeding the call of nature, and attempted to swallow eight times before entering any room in the house. Each new day, brought my awareness to new unwanted compulsions. The urge to touch an object until it felt OK. This could be a table-top, a wall or practically any surface in the vicinity. First with my left hand, then the right one, then both together, over and over again until I could feel a perfect synchronicity of pressure on both hands.

(COPYRIGHT Steve Slavin 2017)

There are differing opinions among doctors on whether OCD and autism can co-exist. Dr C – my clinical psychologist – told me that she would not give a diagnosis of OCD to someone with autism. However, other clinical psychologists do not agree. The latter of these opinions makes much more sense to me. I feel that OCD is an anxiety-driven condition, and what do most people on the autism spectrum suffer from on a daily basis? Yes – it’s anxiety. The compulsions of a non-OCD sufferer who also happens to be autistic may look the same as an autistic that does not have OCD, but the differences do exist. It’s been said that someone with OCD will carry out their routines in the fear that if they do not, something bad may happen. Conversely, an individual with autism may perform repetitive actions because this can have a comforting effect, one that restores a degree of order to a world they struggle to understand. To demonstrate, I would like to read one more chapter from my book – ‘looking for normal’ (Released mid-January 2018)

PLAYING GOLF WITH MY FATHER AGE Seventeen: To his credit, my father always stood patiently and watched my exhausting pre-shot routines without comment or criticism. Depending on my level of anxiety that particular day, I could easily spend five minutes readying myself before each shot. Everything in my body had to feel perfect before I could lift the golf club to begin the backswing. I had to swallow either twice, four times, or eight times whilst holding a certain image in my head, and sometimes even a piece of music. If, during my practice swing, I accidentally brushed the right side of my face with my shoulder, I would then have to brush it again to make this an even number. I was then compelled to balance this, by brushing the other side of my face an equal number of times. On occasions, I became so completely trapped inside a paralysing spiral of nervous tics, obsessional counting and mental contamination, that I would have to walk away from the ball and start all over again: making the excuse that a fly had got into my eye.

(COPYRIGHT Steve Slavin 2017)

Mental contamination – according to my psychologist at the Maudsley, means that I find it extremely distressing to perform any type of action unless I have a pleasing image in my mind. This must be of a person or a place, and often in combination with a particular piece of music. If I cannot clear a disturbing mental image before I perform a task, something terrible will happen. Of course, it won’t, really. It’s just the complex blend of OCD, autism and anxiety that creates these catastrophic thoughts. My problem with contamination is not only with the mental kind. I have certain objects in my house that I do not allow to come into contact with items I consider dirty. By dirty, I don’t necessarily mean actually covered in physical dirt. It’s more the case that an object can be infected by the thought that someone I don’t like has a connection with that particular object. For example, we have a chair in our kitchen that I will not sit on because someone I didn’t like once sat in it ten years ago. I also have to wash my hands if I accidentally touch that chair. I should mention that I also have the perhaps more common OCD symptom of constant hand washing. I do my best not to touch light switches, door knobs or money, even at home. I have to relieve the anxiety by splashing even a slight drop of water onto my hands. If I’m out somewhere and have run out of antiseptic wet wipes, I’ll buy a bottle of water to wash my hands. If it’s been raining, I sometimes clean the contamination from my hands by dragging them through the rain collected on a car bonnet, or by dragging my fingers through someone’s garden hedge. My OCD has never been treated effectively, and in 2013 my OCD became so severe that for a number of weeks, I was treated by a psychologist at the Maudsley Hospital in South London, it was not a success and I’ll explain why: Each week I’d ask the psychologist: ‘do you think a particular symptom is down to my autism or my OCD, the answer was always the same he’d say it could be either.. And asked me what I thought. I realised he didn’t know. Did this mean that in general, even the so-called experts did not have definitive answers for everything?

In common with the majority of mental health professionals I’ve encountered, he had only a very basic knowledge of autism, and this is where the problem lies. 

Despite some recent campaigns by various autism organisations to highlight the need for more of a joined-up approach in the treatment of mental health problems in people with autism, I have personally seen little evidence that anything has changed. This is why I applaud OCD ACTION’s recognition of the needs of autistic people who also have OCD. Although I’ve heard success stories, and many people have obviously benefited from CBT and other treatments, they didn’t work for me. The reason CBT didn’t work for me, and I suspect other autistic people that have language and communication difficulties, is exactly for those reasons, language and communication difficulties. I, for one, do not have the language processing skills required to fully understand what is happening during a CBT session. We also tend to have a problem with inflexible thinking and find it almost impossible to picture that a situation could have a different outcome from the one it usually has. So this core feature of CBT is rendered useless.

(COPYRIGHT Steve Slavin 2017)looking for normal (Released mid-January 2017)

EFFECTIVE COMMUNICATION THE KEYS -TO THE CITY

Finding the best way to communicate with some with ASD is really important.And knowing that you may not always get the answer you were expecting is also a possibility.I often tell the story of a young autistic man on a train.The ticket inspector boards carriage and asks to see his ticket.You’ve gone out of your zone, says the ticket inspector. Your ticket is no longer valid. Where were to going?’ he asks. The young autistic man says, ‘To see my friend,’ 

The ticket inspector is now getting a bit angry and says, ‘Don’t be funny with me, I’ll put you off this train, and you’ll have to pay a fine,’ He asks again, ‘Where are to travelling to?’ the young autistic man says, ‘I told you… to see my friend.’Then the ticket inspector realises that the young man has not understood the question and rephrases it. ‘What station were you travelling to?’ he finally asks. The young autistic man says, ‘Finchley Rd… sorry I got confused and missed my stop.”No problem’, said the ticket inspector.

This highlights the things we need to take into consideration when communicating with people on the spectrum. Try to make your language as clear and unambiguous as possible You may find that you need to rephrase the question a few times before it really clicks with them – experiment. I think it takes time to learn the best communication style for a particular person with ASD. You may have to wait quite a while for an answer…it can take quite some time before we are able to respond. There is one young autistic man I work with at the NAS, that has enormous difficulty processing speech. Although he has a university degree in something that sounds very complicated, he can literally take 5 minutes to respond to a question. Again, there are different reasons that many people with ASD struggle with their communication skills. To reiterate the example I gave with my apsergian geek friend Bob, his problem with communication is understanding the context of what people say to him. This means that he is always getting hold of the wrong end of the stick..not literally… and getting himself into conflict with his colleagues. He will remember everything you say to him down to the tiniest detail, but he will not be able to judge the intent behind the words. My difficulties with speech and language are more to do with the actual processing of speech. Often when people speak to me, the sound of their words come towards me, but most of them evaporate before I’ve had a chance to fully grasp them. The words that do get through arrive in my brain like a scattered jigsaw puzzle that needs to be reassembled before I can respond to the person that’s talking to me. This takes time, and often, by the time I’ve worked out what I want to say, the other person has moved on to another point in the conversation, and now I’m completely lost. I think I may be improving in this, or perhaps I don’t care quite so much about not getting what people say anymore. I’m autistic, that’s just how I am.

To Sum Up

As with most things in life, there are not always enough answers for all of our questions. And how exactly we cope with the joyous combination of autism, OCD and anxiety is no exception to this rule. There are no easy answers, but there are some worthwhile avenues to explore. These are things you probably already do:

• Finding a style of communication that works for that person
• Finding ways to lessen a person’s anxiety
• Having a flexible approach, what works with one person, may not work with another
• Know that you may not always get an answer that seems to relate to the question you’ve asked
• Be patient

Speaking from a personal perspective, there is a simple circular equation that I use; More anxiety equals more OCD, and more OCD fires up my autistic symptoms even more. This creates more anxiety, leading to more OCD… I think you’ll get what I mean.The trick is to work out how to break this cycle.Thank you for listening, and also for staying awake during the bits where I may have rambled on a bit too much.

Steve Slavin adultswithautism.org.uk

Looking for Normal (Released mid-January 2018).