Conversation with a psychiatrist Aspergers Syndrome Condition
(As published in Wings to fly the sequel to Im not broken, Im just different two books written by Linda Brooks RN, with contributions from Prof. Tony Attwood, Dr John Miller and Dr Steele Fitchett.)
With one eye on the door and the other on the street outside the caf where I was standing, I wondered if I had the venue wrong. Where was John? I was meeting up with Dr John Miller to pick his brain on the inside story of adult Aspergers. Oh, there you are we both said at the same time with matching smiles of relief. John had fitted me in between patients and we were meeting up at a lovely niche caf near his consulting rooms. I was just going to walk to your office, I said. Oh why? Well, theyve changed this place so much. Its the same location geographically, but. John laughed. Hmm, yes, not quite the same. Not by half, I said, disappointed that my meeting John wouldnt include a tasty meal, if this is what is called doing the place up, Id hate to see what would happen if they did it down. John rolled his eyes. Whats on the menu? he asked, taking a seat out of the sun and, hopefully out of the breeze. In my mind I could hear my mothers admonition dont sit in the draught, Linda, youll catch a chill. Grease, I said. Oh, dear. John ordered a croissant, obviously hoping, if not for great things, at least for edible. Good choice, I said, I had a light as air chocolate meringue finger that Im sure had sand as one of its main ingredients. John scrutinised the French delicacy, then shrugged and ate it, pulling it apart with expertise that said this wasnt his first croissant.
Passionate about Aspergers I felt it was crucial to have the insights of a professional with his background. Too often the field of public information has been dominated by those without a medical degree, involving seven or eight years of scientific study, and many years of practice. So John was important. His views are important. A psychiatrist brings more to the table than mere observation of behaviours, he brings knowledge of sound scientific research, a standard of evidence-based practice and an intimate knowledge of pharmacology and its effects on the brain. Any body of work, be it a parents narrative or a manual proclaiming to be The Answer to all your questions is not balanced without the input of the doctors who attend crisis intervention in Accident and Emergency clinics, treat patients in institutions and care for the mentally ill client in all areas of treatment. An office where consultations occur is only the tip of the iceberg. We cannot ignore the stories of the practitioners who are at the interface of the business end the dark side; late diagnosis, lack of diagnosis, failure of treatment or self medication with illegal drugs - the fallout witnessed in the Justice system, courts, prisons and rehabilitation facilities, where those with mental health issues are represented in large numbers. While many people use mood altering drugs to enhance social experiences or to experience euphoria, an Aspergian, or someone suffering from frontal lobe impairment will be more likely to take substances merely to feel normal. Misinformation is equivalent to mistreatment, so Dr Miller will help me address that gap. As we sat, we conversed. We should not demonise Aspergers, bipolar or any condition that arises from mental illness or distortion. There is no link between acts of violence committed being higher in the Aspergian community. This is often presented as existing whenever anyone uses Aspergers in the same sentence as the word crime. Its an unfair association and is actually ill presented. John Robison, author of several books on Aspergers is an Aspergian with a wonderful message and presence. His many essays and papers bring the truth to the fore Aspergians are more likely to be the victim of crime than the other way around. Fact. Simple. Their lack of ability to read social cues, facial expression and the subtext of intent of other individuals added to their vulnerability and naivety combine to make them prime targets, not only of the garden variety of bullies, but also of predators and criminals.
2
Im not different, you are!
Adult Aspergers. Its such a hard road. And more often than not, the sharpest pain is felt by those closest to the Aspergian. While the Aspergian can suffer anxiety and frustration with a world out of kilter and people who dont seem to understand how things should be, the spouse, family and friends can feel deep heartache watching their loved one at odds with the world. A world they dont see eye-to-eye with, a world that could easily be changed to fit their reality, if only everyone else could see what needs to be done. Yes, Aspergians have a deep seated belief that they have a greater understanding of behaviour, people and life. It is not their perceptions that are skewed, not their assessments that are faulty. Very little time is spent on introspective questioning of what did I do wrong or how did I contribute. There is very little of the landscape of doubt of their horizon. While their partners, work colleagues and families toss and turn at night trying to understand them and their behaviour, they are immersed in a world of anxiety or discomfort in a world that is disordered. They bear the responsibility of being lonely warriors, pushing back the tide of the irrationality of the people in their lives, not just at work, but perhaps even the guy in the corner store that may unwittingly set off a sense of injustice and discomfort that can be crippling. Why are there so many stupid people in the world? Why do people have so much trouble seeing what is right under their noses? The only assumption they seem to make is that these other people must choose to be different, and quite possibly take on courses of action that are designed to make the Aspergians life difficult. I have a friend James, who works in insurance assessment and he recently had a client with Aspergers. The young mans name was Thomas. Appointment after appointment to meet with Thomas was cancelled by him. James was at a loss. Hed had constructive phone calls with Thomas and felt hed built a rapport. And yet, Thomas always backed out at the last minute. On one occasion, James attended the property, spoke to the neighbour and was assured that Thomas was home, but he wouldnt answer the door. When James sat down with me, he said, I dont get it. The kid has a legitimate claim, but I cant meet up with him. Hes been doing this for months and it looks bad from an insurance point of view, but I want to help the kid. You know about Aspergers. Can you please help me? I was able to explain that he needed to ask Thomas what was necessary to make a meeting happen. What did he need to be comfortable? Where would he like to meet? When would be best? Would he like a support person with him for their interview? This was enough to create a comfort zone that the young man needed and he agreed to meet James at the home of a friend, an older woman who had been looking out for him. Another, more disturbing story emerged in the course of the insurance investigation. James found that Thomas was being bullied by his neighbour. James was able to offer alternatives to Thomas, who with the help of his support person relocated to another flat. Thomas had been living not only in anxiety, but also in fear. The neighbour had actually been responsible for the fire that damaged his flat. Thomass fear of a police investigation, added to his personal discomfort of dealing with the problem, made it seem as though hiding away from the situation was his only viable option the only one he could handle. So, with Aspergians experiencing difficult in relating to others, often the next logical progression is to limit contact -with those who confront their comfort zones, and then gradually many others. Many therapists report on the living conditions of socially maladapted Aspergians. They live in isolation. Its not unusual for them to live in their cars, or tiny cramped rooms. Anywhere at all where the world doesnt intrude, bring confrontation or conflict. Choosing to be alone, when unlike the commonly held misconception, they desire human interaction, contact and friendship. Its just all too hard. Job after job sees them decry working conditions, arrogant people, tasks that are impossible and attitudes from bosses or co-workers that are unreasonable. The employment situation becomes untenable. They dont complain that no-one gets me. They complain that no-one gets the way things are, or how they should be.
3
Myth, medication & method
Dr John Miller is a practising psychiatrist with a great deal of experience with Aspergers. He talked of the difficulty adult Aspergians have in accepting their differences and the fact that they may be confronting and exhausting. They lack insight into the consequences of their own behaviour on others, particularly their spouse. Dr Miller said he has treated some people who have come solely because their wife/husband says You have Aspergers. Go see someone. The spouse reports them as having problems. The person improves on medication, but often cant see any improvement themselves even though the spouse can see change and expresses gratitude. Its quite common in these cases that the Aspergian still doesnt believe they have Aspergers. Dr Miller reports that medication is really useful in some adult cases. This is especially true if there is a degree of discomfort or anxiety that effects functioning in a relationship, life or employment. He says there is still much that is unknown, but they are making interesting advances. Its wonderful to have the insight of a medical specialist as opposed to a social scientist or other expert because their background university training is extensive into the wiring and operating systems of the physiology of the mind, and also extensive knowledge on the use of medication. Not only have they spent seven or so years at university, they have attended the practical side of their doctors training in hospitals. And that is before undertaking post graduate specialisation in the area of psychiatry. At least this is the case in Australia. In some countries therapist is a term that has a large variety of background qualification and does not carry the weight of training and experience that is psychiatry. This is why I wanted Dr Millers voice included. There are so many theories and myths, offers of cures, and things to blame few of which has any merit; most adding panic and a financial burden to an already overwhelmed family. Then there are the outright charlatans making money out of the sheer desperation of suffering families. And make no mistake; there is big money to be made. Convenors and companies alike are literally raking in the dollars. Parents are so stressed and hungry for solutions that a referral from some well meaning friend, counsellor or family member may not receive the scrutiny it deserves. It is a lifelong condition, a developmental disorder that relates to the individual landscape of the frontal lobe of the brain. Early medication and intervention is key, and the earlier this occurs the better the long term prognosis and demonstrated results. Any therapy that offers a generalised approach, ie., a one size fits all approach is suspect, as is any therapy, vitamin or dietary regime that offers a cure. Cure being the operative word here. Accepting the reality of the condition is often the greatest gift that can be given an Aspergian. Hope for change and improvement is beneficial, but it needs to be in terms of realistic outcomes. False hope can lead to depression, anxiety and greater pressure. This applies equally to the family who sees no expense spared in the cause for a better life for their loved one. All therapies must stand the test of science. No-one would undertake every promise offered for the treatment of a physical disease without researching the therapy offered, and the same scrutiny needs to be applied to programs, regimes and therapies for Aspergers, and its allied conditions. Apart from a haemorrhaging financial situation, much harm can be done by acting on ill-conceived or false information. Many women report differences in their foetus in utero, giving new insight. A strong genetic link has been demonstrated. At every discussion on a recently diagnosed family member theres often someone in the corner saying, Old Uncle Ned was like that... And there are the silent ones who secretly think, Theyre talking about me. There is no real evidence that Aspergers is on the increase. Aspergers has been around as long as there have been humans, we have simply missed the clues. Weve been looking right past Aspergians for a long time. Past them and through them. They were sidelined for not fitting in, castigated by teachers for having poor sportsmanship, punished by parents for not remembering lists, laughed at by community members for their collections, their weird prosaic speech patterns, called liars and fakes for an inability to look people in the eye, judged odd for their encyclopaedic knowledge on space but failure to manage a routine grocery shopping chore. And the list goes on. Importantly they existed before the invention of vaccines. Let the scientists debate the veracity of that claim. Personally, I will wait for definitive answers. There is merit to getting on with what you have in hand, rather than seeking blame or causation, because the jury is still out. 4
Children often begin to stand out as displaying autistic tendencies before their second birthday. I think its pertinent to consider that this time of presentation coincides with the age where children are beginning to socialise in a more constructive manner, when general practitioners, teachers, family and friends are measuring or comparing maturation, task ability and age appropriate skills and behaviour. It would be a shame to indict vaccinations as causative when the relationship may only be a coincidence of timing. After all, it is a weighty decision. Its not on a par with deciding whether or not to give your child braces for their teeth the diseases a child is vulnerable to without vaccination are potentially fatal. A child with Whooping Cough is heartrending, an epidemic is a tragedy.
People who accept their condition, make strides to understand it and have family believing and working with knowledge and acceptance make better strides into the future, and function at a higher levels in family and society. Support groups for Aspergians and families of Aspergians are invaluable and help bridge the gap in access to professional care and information. Carers and parents can actually be a huge part of understanding and therapy. Information and interventions are shared and the benefits discussed on an individual basis. And better still, without the expense incurred by other therapies. An accurate diagnosis is essential, even if the initial findings have to be put aside as more information about the individual behaviours come to light. Its important to rule out other frontal lobe conditions, because although Aspergers doesnt predispose anyone to other mental conditions, its important to look at other factors because medication wont be as effective unless the initial diagnosis is all-encompassing of the markers for frontal lobe conditions. It is also important to take the personality of the person into account when diagnosing. Personality is separate to any of these conditions, although personality will impact on the manner in which Aspergers and other conditions manifest themselves symptomatically. It will also have an effect on treatment. One way to describe the difference is to say that someone may prefer their own company, and enjoy solitary pursuits, but have no difficulty with groups and relationships. They would simply prefer one-on-one social interactions where possible. However, someone with Aspergers or with conditions that impact on social communication will experience discomfort, sometimes extreme distress when they are involved in various social settings. Their individual comfort zone is based on need, rather than mere preference. It has been commonly perceived that other conditions piggy back on Aspergers, but the simple truth is that ADD, ADHD, Personality Disorder, Bipolar, Schizophrenia all exist in the frontal area of the brain, so someone with Aspergers is not any more likely to take on any of these other conditions than the average person. In other words, the Aspergian is at no greater risk of developing bipolar or schizophrenia than anyone else. The conditions simply occur in the same geographical location the frontal lobe of the brain. In simple terms, bipolar is the experience of altered mood states with extremes between depression and mania. It was previously called manic depression. It sees the pendulum swing from unrealistic highs to deep, despairing lows. Each individual experiences different lengths of time in the framework of the disorder. Many people with bipolar present with depression as their primary diagnosis because when they experience the manic phase there is a sense of euphoria, of the heightening of all their senses. Many with this condition crave the manic phase, feeling that it brings greater creativity and abundant capacity for pleasure in life. However, this phase is also allied with disassociation from reality and a false perception that nothing can go wrong. They describe the feeling as one of invincibility. It is this euphoria that differentiates bipolar from hyperactivity. While many people have the concept that people with schizophrenia have hallucinations and hear voices, these states of mind are not always present in schizophrenia. These factors present difficulties for the professional when diagnosing. Medications that are prescribed by caring professionals are uniquely designed to affect the frontal lobe. Rarely will medication for bipolar, for instance, affect change for an Aspergian. In fact, this is often how the diagnosis can be achieved. Science and psychiatry still have advances to make. Diagnosing Aspergers is not always a simple process. It requires thoughtful analyses of the behaviour and level of function of the individual. The lack of insight that is common in Aspergians in relation to their own behaviour considerably impacts on the ability to diagnose definitely. 5
The medication of choice for Aspergers is anti-psychotic therapy. It is not a desired result to sedate or slow the persons thinking or affect mood alteration. Sometimes the main benefit of medication for an Aspergian is that it fosters a calm state of mine, where the person has an ability to reason, to connect cause and effect and to think ahead and project the likely outcomes of their behaviour and its consequences. They are less anxiety driven and more thought driven, able to use a reflective reasoning approach that may be impossible in a distressed state. This calmer frame of mind may facilitate recognition of the impact of their actions on others and assist empathic understanding towards others. A person who sees nothing wrong when experimenting with some project that is conducted late at night, with high noise levels or a large area of necessary equipment will not understand why the neighbours and family refer to him as a messy, inconsiderate nutcase. So in the therapist office, he is more inclined to relate the stories of his familys lack of understanding and appreciation, rather than perceive his behaviour as impacting negatively on others. He wont see the need to modify his actions in the light of the greater good that he hopes to achieve in whatever endeavour he is pursuing.
Referral
Dr John reports that many of his adult clients are finding their own way to him. With the growing community awareness, it isnt uncommon for someone to make an appointment to see him because they have felt a sense of unease, heard a smattering of information on Aspergers, then gone home to google the condition. This is a group who walk through the door with, I think I have Aspergers. I looked it up. The description fits. This community awareness has also been generated by many wonderful Aspergian characters portrayed in movies, and with wonderful sensitivity and authenticity. More importantly, as quirky, but full-bodied personalities who are engaging and endearing in spite of their eccentricities. One fabulous recent example is Up Close and Incredibly Loud. We know this movie works because as we leave the theatre, we not only feel a connection with the young boy, we feel that perhaps the world would be a better place if there were more people like him. In fact, we allow ourselves for just that precious moment to wish we were like him too - a little boy with a multitude of fears, but the courage to be different, carry a tambourine to push back the noise of an intrusive world and go on a quest. A quest that brought him to confront his worst fears. A quest where he intended to find a lost area of the city, but instead found the beauty of human connection with all its flaws, potential for failure and pain. If only we could embrace the idea that when life becomes difficult its okay to carry a tambourine. And better still embrace those who carry one. For they are all of us our timid, faltering, better selves courageous and true.
There is an increase in referrals from General Practitioners and Paediatricians. We would do well to remember that although the term Aspergers has been around for some time, knowledge has been slow to arrive. This isnt unusual with any area of medical science. It takes time to learn, research, test and apply. This is even more relevant when it comes to studies that involve understanding of the brain often referred to as the last frontier. Be proactive, but have patience. There are so many dedicated professionals working for solutions, looking for answers. One boon that has come out of research in recent times is the enlightened idea of an autism spectrum. This has resulted from a great deal of study across the globe by researchers with no agenda, payout or collective bias. Essentially, Aspergers Syndrome is now part of the Autism Spectrum of conditions and the DSM V has been updated to reflect the acceptance of Aspergers as being on the autistic continuum. This is an advance in thinking and practice. There is the inevitable question of diagnosis in the rationale of why have a diagnosis? A good practitioner will base their assessment on the degree of life impact level of functioning at work, level of anxiety and triggers for distress, ability to relate effectively to family and their ability 6
to process information. If there is pain, disconnection or disability in these areas then a diagnosis is more than a label. A diagnosis opens the door to understanding. It may also bring relief. A sense of freedom often ensues when the Aspergian realises that they are okay, they have a future, but most of all they now have choices. They can choose the environment that fits them, rather than face the constant demands to fit the job descriptions of half the positions vacant in the world. They can find a corner of the employment arena. Maybe a small office where the boss realises their need for solitude and quiet, and simply lets them get on with it. They might decide to work from home where they can control their hours, conditions, and even the clients they accept. Maybe they can free a partner to go forth and conquer and concentrate on being a parent. The options are endless, and as varied as the individual. They can embrace the fact that they work best alone. Not for them the corporate boardroom, or the jostling to compete. With an already strong ethic for their personal best the rhetoric of business propaganda and motivation is useless, even annoying. Best of all they can learn to ask for conditions at work where they can perform to the best ability. Could you please put me on projects where I work alone? Bright lights and noise adversely affect my ability to perform. I need to ask lots of questions because Im motivated to learn. I like working here, but Im no good at the front desk or customer service. Are there some projects where I can work from home? What other options do I have? Hopefully, somewhere through the process, employers, higher education venues and the community will gain an understanding of Aspergians, shift them from the lazy, rude, indifferent, unmotivated categories that they currently inhabit and make allowances in workplaces, communities and homes so that they can become fully functioning, contributing members. The fact that they are anxious separates them from the list of indictments levelled at them. They are avoiding many things, not necessarily work. I asked Dr John if he sees a higher number of men or women. More males seek help, as it is more common in males. But then are we missing the diagnosis in females? I think not. To me it stands out clearly as a diagnosis and there are a number of females I see where it is fairly clear. If we just listen and observe. he said.
As we were leaving I gave John a delicatessen bag with a Florentine biscuit. It wasnt much. His eyes lit up. I know John shares my passion for a balanced view of Aspergers to be presented with myths and conspiracy set aside so that real change and understanding can be affected. As a psychiatrist, his professional ethics make it harder for him to have a voice in the wider community. Its disappointing that a psychiatrist, especially one with your commitment and experience, doesnt have an opportunity to tell your story that other side, I said. John smiled widely and pointed eloquently at the page Id just scribbled notes on. I was his voice too. I had been looking forward to meeting with him. Hed unexpectedly, but thoroughly enjoyed Im not broken, Im just different, finding himself lost in the story. I loved the manuscript for Wings to fly. Like the first book, I just couldnt put it down, he said. But this one is really good. It has the potential to inform in a wider, more defined way. Im thrilled to be involved. It was a heart-warming statement to my author heart, but it also gave me hope the book may help bridge the gap towards understanding and acceptance, not just for children with Aspergers, but also for adults ill at ease in an increasingly confronting world, where teamwork and connection are touted as essential. Hopefully the narrative will get the message across to those struggling with encyclopaedic tomes on the subject. When living with Aspergians, the distortions in their thinking and perceptions can be heartbreaking to others. Friends and family wonder if life will ever make sense again. Those Aspergians who have loving, but also grounded people in their lives have an immeasurable gift, even if they dont perceive the benefit. If you are in this position, your instincts will guide you along a path where others wont see the big picture. And this is no small thing.