Others attitudes

"My suffering from others attitude is deeper than any frustration that Autism brings" 
∼Alicia Lile


Alicia's words express perfectly the difficulties of living with a neurodevelopmental 'disorder' or difference and apply equally to Tourette Syndrome as they do to autism. Autism has become well-described in the media, although many facts are often misconceptions or myths. In Tourette Syndrome, mythology prevails, unfortunately, and most have little true understanding. Although surprising to many, there are common aspects of the two conditions that are frequently shared and these include some of the 'core difficulties':

• Sensory processing difficulties
• Obsessive thinking
• Perseveration
• Attention deficit
• Understanding intentionality in others, not knowing how to respond and other 'Theory of Mind difficulties
• Social 'faux pas'
• Literal thinking and pedantic thinking
• Speech difficulties
• Impaired impulse control
• Emotional reactivity
• Anxiety
• Insomnia
• AND even tics

Disorder or diversity?

Whether neurodevelopmental 'disorders' such as autism/Asperger Syndrome, Tourette Syndrome and obsessive compulsive behaviours (e.g in OCD) and ADHD are medical conditions or illnesses in the strictest sense is not easy to discern. It can be argued that they are no more illnesses than the traits of a musician who studies obsessively to perfect their art, a gifted ballet dancer, a brilliant theoretical physicist who works ardently seeking an elusive boson, a highly-driven explorer or political campaigner, a geek, a very shy person, an entomologist, a raconteur, a monk, a pot-holer etc. We are all different and these characteristics certainly cannot be tested for in very early childhood. In the same way there are no effective tests or investigations for ASD, TS or OCD at any age or even any yet credible 'mechanisms' to explain the so-called 'morbidities' which are commonly cited as being characteristic of these disorders. What is apparent is that these are spectrum conditions and that there are no universals, with some individuals being impaired to an extent that their ability to function, in carrying out some of the essential activities of daily living, is disordered. A disorder, clinically, is an affliction that does just that. However a large proportion of individuals will be able to function at a high level or may even have enhanced qualities. Their principle challenge in life comes from intolerance and sometimes downright bullying by their peers. In other words it is not they who have the problem, it is other people. Those who are unable to accept them, see past their 'disorder' and open their eyes to the real person who wants nothing more than inclusion and a chance to show what they can do. 

Some would argue that most 'sufferers' are just part of the diversity of mankind and that it is arrogant or discriminatory to label people as being autistic or Tourettic as it assumes there is such a thing as normal. Those thus labelled often turn the tables by referring to others as 'neurotypicals'. Often the term neurotypical becomes a derogatory response to those who are seen as judgemental or intolerant in much the same way as people may be subject to prejudice and even exclusion for having a different skin pigmentation or hair colour. The clinical approach to these disorders mostly defines by symptoms which are seen as abnormal and the perceived disabilities caused. In contrast many who have been medically-labelled for life with such 'disorders', come to resent the inference that they are, and always will be, restricted, impaired or disabled and stress that there are many positives or that they could effectively compensate for any disadvantages if only permitted tolerance, understanding and given a chance. Some characteristics may actually confer an advantage.

Human subtlety will never devise an invention more beautiful ....Da Vinci

'Human subtlety will never devise an invention more beautiful, more simple or more direct than does Nature, because in her inventions, nothing is lacking and nothing is superfluous.' 


Leonardo da Vinci

NLD: Non-verbal Learning Difficulties

NLD (non-verbal learning difficulties) may occur with a number of neuro-developmental disorders, most commonly with Asperger's Syndrome. People with Tourette Syndrome may exhibit some of the symptoms of NLD to a greater or lesser extent. Children and adults in education may experience difficulties which can affect reading/writing and hence academic progress but unlike dyslexia these don't usually delay reading development. Individuals with NLDs / TS are often comparatively early readers and quickly develop an extensive vocabulary.


Symptoms and characteristics of NLD:

• Difficulty with recognition of emotions in other people & in expressing one's own emotions
• Difficulty with the appropriate use of touching others. When to do and when not.
• Misunderstanding or inability to respond appropriately to non-verbal communications.
• Maintaining attention in noisy/visually complex environments.
• Difficulty with remembering/recognising names, faces & locational navigation
• Difficulties with reading & writing quickly despite often having excellent language abilities & early reading abilities
• Often compensate for non-verbal difficulties with highly developed verbal abilities. Often rapid speech & too many words!
• Perception of the environment as chaotic & may attempt to take on too many simultaneous activities.
• Anxious about failure. Often over-compensate by doing too much too quickly and hence become confused with the complexity and magnitude of the tasks they are faced with

.... don't judge or assess unfairly

‎"I you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid" 


Albert Einstein

Student with Asperger's takes own life

cambridge-news.co.uk

Article published: 08/12/2010 16:30 - Updated: 08/12/2010 16:53 (article/s now been removed from internet)

Medical student took his own life 

by Julian Makey

"A medical student at Cambridge University killed himself after his bid to take 

a crucial exam for the third time was rejected, bringing his career to an end. 

Ronjoy Sanyal, 26, wrote a long report before his death in which he said he 

had not been best served by the university, an inquest was told. 

Mr Sanyal, of Roseford Road, Cambridge, injected himself with a lethal 

dose of nicotine and was found dead at his home after his parents raised 

the alarm with a neighbour. 

The Gonville and Caius student, who had Asperger’s Syndrome, which can 

cause communications problems, killed himself in July after being told that 

his application to take a paediatrics exam for an unprecedented third time 

had been unsuccessful. 

Mr Sanyal was said to have previously considered taking his own life in 

2006 after running into earlier problems in his medical training. 

Coroner David Morris recorded a verdict that Mr Sanyal took his own life 

after being told that he could not qualify as a doctor. 

He said: “It is a great tragedy and lessons need to be learned. I am sure 

lessons have been learned and will be learned.” 

Dr Diana Wood, director of medical education at the university, said Mr 

Sanyal had been given extra support, but concerns remained over him, 

particularly because of his problems in communication. 

She said changes had since been introduced so that students’ progress 

could be monitored more closely and more personal support was available." 

what will make a difference?

I think although TS itself may cause considerable problems, for most the overwhelming issue is discrimination and bullying, not tics or other symptoms. As bad as they can be they just don't compare with the desolation so many feel because of the way they are treated by others. That's the bit that truly sucks and for me the thing that needs to be changed more than anything! 

I'm not convinced that millions of dollars for research, looking for a 'cure' and trying to educate inadequate doctors is going to make the biggest difference at this stage. It's the lives of kids growing up with TS now that matters (and adults too) and things will only improve with awareness and legal protection neither of which really exists in any substantial form.

To make a difference, I wanted to become the doctor I never had

Knowing what growing up with Tourette Syndrome was like and remembering the difficulties I had with understanding the problems I experienced as a child and what caused them, lead me to finding ways in which I could help children with TS and other 'special' needs caused by neuro-developmental disorders. There was almost no useful advice or support available and I don't believe things have moved on much now that I am an adult.

I wanted to find a way in which I could make a difference and be able to improve awareness, influence professional attitudes, improve diagnosis and subsequent provision and treatment. I determined that the best way to do this was to become a doctor myself and specialise in developmental paediatrics or neurology. I could not only become directly involved in the diagnosis and treatment of TS but also become involved in clinical research. Having TS myself would, I hoped, give me a unique insight and would also ensure I had some idea of the issues that children with TS and their parents face. I hoped my own 'disability' would allow me to better connect with and relate to others who are similarly affected. I wanted to become the doctor I never had.

After gaining my first degree in biological sciences, I taught for several years in a 'special school' as a teaching assistant but eventually found this frustrating as although I was helping with educational aspects I became very aware of the profound lack of understanding about Tourette Syndrome, autism and other disorders, among both health and educational professionals. The misconceptions of the medical profession and very poor advice given to parents and their children was something I found truly astounding and worrying.

I was also aware that I had little opportunity to progress and qualify as a teacher. I had applied for post-grad teacher training during my time as a special-needs teaching assistant but, as I expected, I was not even given an interview. 

I did eventually get a place at medical school but encountered much unexpected discrimination, most of which took place at the very end of four years of extremely hard work which included facing the challenges that studying medicine with a disorder like TS presented. The manner in which I was treated by staff of the medical school came as a big shock and I was ill-equipped to deal with it. I was subjected to what seemed like a concerted effort by my medical school to deter me from completing my training by using every means possible to question my abilities, undermine my self-belief and to even suggest I would pose a risk to my patients should I practice. Instead of supporting me as I had imagined they would, my university made my life impossible. I made the painful decision not to return to complete my degree.

My experiences with medical training and the prejudice I encountered, is a complex story that I hope to tell fully one day and it will help explain how, despite all signs being to the contrary throughout my training, I had to ultimately resign myself to hanging up my stethoscope for the last time and abandon a large collection of costly medical textbooks over which I had pored for unimaginable hours along with the hopes that had driven me forward. I also have a large debt and student loan to repay. 

I at least have the satisfaction that I was able complete all my clinical training rotations successfully and received good commendations, assessments and much encouragement from the consultants under whom I trained in several hospitals. I had put in long hours on the wards, in theatre and clinics. I found clinical practice immensely rewarding and found I was actually good at it. I found patients related to me very well despite my obvious 'differences'. I knew I had to work a lot harder and spend much more time than most students to get through all the reading and written assessments. The time limitation on written exams and having to take them in a crowded examination hall was an enormous challenge. In one major examination I was told to keep quiet at the beginning of a 3 hour written paper in a large hall with several hundred other candidates. A member of staff, a qualified doctor who was well-aware of my TS, even 'shooshed' me because I was making too much noise! I spent most of that particular exam in a state of much higher stress than usual and in concentrating on hiding/suppressing my tics, hoping not to disturb other students. As expected I did not have time to complete all the questions (I got almost 70% but they still failed me on that paper). 


Giving presentations was one of my biggest fear as I would have to become the focus of attention in a room full of smart and articulate people but I managed to overcome this and achieved a passable performance although the stress was often overwhelming. For a while I really thought I would achieve my goal and would be able to transcend the difficulties of my condition.


During my course I was subject to numerous highly discriminatory and unfounded comments by several members of staff of my university who tried to convince me that my disability would mean that I would not be able to carry out my clinical duties adequately despite having successfully passed all my training assessments of clinical competence. This I am certain was a consequence of a profound lack of understanding of what TS entails. They also ensured that I would not be permitted any accommodations or reasonable adjustments during my training and academic assessments. I was informed that the university did not have money or resources to help students with such disabilities. Instead I had various restrictions and additional requirements imposed on me that were not imposed on other students, including what were subsequently determined to be unneccessary successive compulsory medical assessments.

I often feel very disappointed and immeasurably sad that I was prevented from graduating alongside my other classmates with whom I had shared many years of training and share in the mutual sense of achievement. This is often the true reality of Tourette Syndrome. You know you can do something but always have to struggle with others not taking you seriously. Sometimes you just resign yourself to believing that however hard you try to prove yourself, it will never be enough. You get used to seeing your friends and classmates progressing through life and effortlessly overcoming obstacles that may stop you in your tracks. However despite this I still try to keep some belief in myself and never feel willing to give up. A problem with Tourette Syndrome, is that individuals are often painfully aware of how others see them but feel they can do little to change those perceptions. 

I had spent four years with my fellow medical students going from our first clinical experiences to greater challenges with excitement and hope for the future. We went through incredible experiences together and gradually developed confidence in ourselves and our clinical abilities and the potential value of our skills to others. I do however feel a great sense of satisfaction in that my clinical partner, throughout my years of hospital training, managed to graduate successfully despite having many setbacks and struggling on many occasions. In the end she finally made it and I'm sure she will be a competent and dedicated doctor.


I can't emphasise more strongly, the urgent need for better legal protection for students with disabilities and legislation that ensures they are supported appropriately and treated equally with other students.

In a nutshell .... a negative day

I always try to be positive and tell myself never to let TS stop me from doing anything in life or believing I can achieve things. Today however I feel overwhelmed by all the things I know that TS HAS stopped me from doing and all the problems it has and will cause me and my family.


Sometimes I trully hate Tourette Syndrome and wonder if I really should be here at all


The way you are treated by others can be intolerable
There is so little understanding and awareness
Medical provision for TS is so inadequate
There is almost no provision or support for people with TS in the UK
Because of the prejudice of others it is very difficult to earn a living or have a career
There is little protection against discrimination and harrassment 


Most people have little ability to see the person beyond the disorder and so almost never take you seriously however hard you try or however articulate and qualified you are


People seem only to 'define' you by your TS


This IS how I and others with TS often feel when things are getting too much. I can't say whether I would wish to have been born without it. I would have been a different person - it is so much a part of who I am .... for better or worse and there is little I can do about it


The one big dream I have always harboured is the possibility that one day I might be able to live in America where they have legislation to ensure disadvantage is reduced and I believe a better awareness about Tourette syndrome beyond the negative and stereotypical perspective that prevails in the UK.

What Tourette Syndrome is: The Facts

Tourette Syndrome (TS) is a neurological developmental disorder (as is autism and cerebral palsy)

Children and adults with Tourette Syndrome are not disturbed, mentally ill or mad and do not require psychiatric treatment

Tourette Syndrome is known as a 'spectrum' disorder (like autism) in which different individuals will have differing combinations and severities of symptoms that reflect the specific neurological 'impairment' to the affected areas of the brain

Tourette Syndrome has a strong genetic component (autosomal dominant) and so is inherited through one or both parents

People with TS are usually within the normal range of intelligence (IQ) with a considerable number falling into the upper end of the range

The most noticeable symptoms (and well known) are vocal and motor (movement) tics - tics are involuntary behaviours (although they can often be suppressed)

Some individuals are aware of an 'urge' to tic but may find it very difficult to prevent them from occurring

Motor tics may include blinking, nose-scrunching, pouting and other facial tics, eye-rolling and looking in unusual directions, head nodding, neck-twisting, shoulder-shrugging, limb movements, walking-strangely, muscle tightening relaxing (e.g. abdominal and limb muscles, flexing fingers, diaphragmatic movements, tongue movements) and many more. Diaphragmatic movements (tics) may affect breathing efficiency and throat, tongue and soft palate movements (pharyngeal/laryngeal/oesophageal) may affect eating, drinking and swallowing activity and can result in choking.

Vocal tics may include grunting, throat-clearing, squeaking/squeeling, tongue-clicking, blowing raspberries, exhaling rapidly or forcibly, blowing sounds, sniffing, blowing air through nose, calling out words or phrases, repeating other words/phrases or sounds (echolalia), repeating one's own words (palilalia) and making almost any other sound possible

Although highly publicised in the popular media, the symptom of copralalia in which curse words or obscene words are spoken is a rare condition in TS and affects only 10% or less of individuals. This figure is probably much lower in reality as improved diagnostic expertise has revealed TS to be more widespread with the vast majority of cases not involving copralalia. Some individuals also have copropraxia in which gestures are performed that are considered 'socially unacceptable' or rude.

Many people with TS tend to speak impulsively and will often say things spontaneously without being able to filter them out whereas other people might have such fleeting thoughts which go no further. This may include inappropriate words that may nevertheless be very true and relevant to the situation but are perhaps not generally socially acceptable.

Tourette Syndrome, in most cases, becomes apparent during early childhood and a child will usually experience symptoms before the age of 10 years and usually by 18 years. Although often becoming noticeable between the ages of 4 to 7 years it is usual for parents to be able to remember signs of it retrospectively at an earlier age.

There are some incidences of late onset in adulthood however these are sometimes seen as an increase in severity in people who have have had a milder form during earlier life.

Currently TS is diagnosed when both vocal and motor (movement) tics have been present most of the time for at least one year.

There are however many other symptoms and vocal and motor tics are really just the 'tip of the iceberg' but usually the part that gains the most attention.

The following are often a part of Tourette Syndrome:

- Obssessive and compulsive behaviours (OCB). These are neurological in origin (e.g. developmental) and a part of the TS spectrum. They usually differ substantially from the pattern seen in the psychiatric disorder, obssessive compulsive disorder (OCD) and tend to be realtively unresponsive to the drugs commonly used for treating OCD.

- Complex tics: may include: touching and tactile contact with objects and other people, twirling around, touching the ground, jumping and sequential or ritualistic behaviours. These are closely associated with compulsions and it may be impossible to distinguish them from each other. Many tics both simple and complex have a strong compulsive element.

- Impulsiveness

- Sensory hypersensitivity and difficulties with processing sensory input

- Attention deficit and poor concentration

- Sleep difficulties

- Hyperactivity

- Unwanted, 'swirling' and intrusive thoughts (these are rarely talked about but may be very unsettling and distracting to the individual and in some cases become a great difficulty)

- May talk rapidly or excessively. There may be a tendency to perseverate over a topic until it is exhausted due to a need to 'get to the bottom of things')

- Increased urine flow (polyuria) due to abnormalities in the production of neuro-hormones that control water reabsorption in the kidneys (deficit of anti-diuretic control)

- Stress may cause an increase in TS symptoms

- Emotional volatility (some people with TS find it difficult to control impulses and emotional responses  and may experience 'rage' epsiodes

- Stuttering and other speech difficulties

- Impaired ability to 'read' other people's intentions e.g. may not realise they are being deceived or mocked

- Strong need to socialise (although this is often offset by the difficulties that are sometimes experienced due to others reactions and attitudes towards 'Tourettic' behaviours and also to simple prejudice)

- Many of the symptoms and difficulties of Tourette Syndrome are a consequence of reduced filtering by the brain of impulses (motor, thoughts, emotion, vocalisation etc.) and sensory input. Many individuals experience 'low latent inhibition' in which they are aware of an overwhelming amount of detail in their environment which must be consciously and selectively filtered

It is not uncommon that in adulthood there may be an apparent lessening of motor tics. Many people are better able to manage or suppress tics with age although much of the 'hidden' part of TS will often remain. Some people are able to divert motor tic activity and make their tics less noticeable. Many tics may occur in muscles that are less noticeable such as the diapragm, the abdominal or gluteal muscles or involve tightening and relaxing. in some individuals the obssessive and compulsive symptoms may increase with age or there may be an increase in motor or vocal tics later in life. The pattern is highly unpredictable. Most adults report that overall their TS remains with them throughout their lives.

- In children there may be many issues that affect learning: these include slow reading and writing speed (although often very early and proficient readers and excellent at spelling and vocabulary), poor attention and concentration due to sensory processing difficulties and tics and distracting thoughts (thought tics). They may also experience difficulties socially due to other children's perceptions and reactions. One of the greatest difficulties a child with TS may have is having difficulty with following the many 'rules' and restrictions  imposed on them at school. Impulsiveness, involuntary tics and other behaviourisms do not fit well with the constraints of the classroom and the need for order and discipline. Teachers may have to develop an appropriate level of tolerance while still imposing 'normal' restrictions for other pupils. The key to this is usually 'talking about TS and education about the condition among pupils and staff.

Diagnosis can be elusive for many .... is this ineptitude?

In the majority of cases, late diagnosis is usually a consequence of inadequate knowledge and poor diagnostic skills on the part of doctors. TS is not a rare condition and has a complex but comparatively unambiguous clinical presentation. Doctors like to cite an assumed rarity as a reason for not having sufficient knowledge. The reason they have not supposedly encountered it (it's the same with teachers who say they have never seen a child with it) is because they are often unable to recognise it and often have an erroneous perception of the symptomatology.

Misdiagnoses abound and include depression (most common), psychosis (schizophrenia), bipolar affective disorder, ADHD, autism and personality disorders. TS is actually a relatively easy disorder to diagnose and few other conditions are closely similar in terms of the combination and expression of symptoms. Compare for instance with Asperger's or high-functioning autism which has a broadly similar incidence but is extremely hard to determine in some individuals.

There are few excuses for a lack of knowledge in medicine. Doctors are professionally bound to be competent and to ensure their knowledge and ability to manage the conditions they encounter is not wanting. They should be honest if they do not understand something outside their competencies. In that circumstance they must refer to an appropriate specialist. It is unprofessional to falsely claim an ability to diagnose or treat a condition. There have been a number of court cases resulting from missed or misdiagnosis of TS where negligence or incompetence has been claimed. The defence is usually that it is a consequence of 'ignorance' rather than 'negligence' and that TS is a 'rare' condition.


Why are so many doctors unable to correctly recognise disorders such as TS that have very overt symptom patterns and are in hindsight unmistakable? I personally know of doctors who have failed to detect serious life-threatening conditions that had very clear presentation (symptoms and signs) that would not be missed by any medical student, who would have been 'failed' had they done so. As patients we must demand higher standards and ensure we are better educated ourselves about TS and it's pharmacology than many of the physicians who claim expertise. In many cases this is not too difficult! There are many good doctors but still too many who get things wrong without reason. Although with some the reason is one of personal opinions and stereotypical thinking and not based on evidence or good awareness of the medical literature. 


I feel a need to rant a little on this issue. My own parents were told by doctors 'it is just a habit he will grow out of' and that it was nothing to worry about and then later, when TS was eventually established as the diagnosis, I was informed 'it will get better as you get older and disappear' well I didn't and it hasn't. I now know many children and adults with TS and they offer collectively a very different perspective of the disorder, one brought about by first-hand experience and knowing existentially what it is like. It is not just about what others see (including physicians) e.g. some of the more noticeable 'tics' - there is so much more and that is the part that is usually 'for life' and that gives the greatest difficulties. Often it is that very aspect of TS (and it's associated symptoms/conditions) that physicians will deny exists - a source of much annoyance and exasperation to those afflicted.

your child has TS but you do not ....

I think if you have a child with TS but don't have it yourself it is always good to speak to adults or older kids who do as they can give some insight into what it is like (and have lived with it for some time). However all cases vary and there is no one defining normal presentation. Individuals manifest different aspects or combinations of the spectrum of symptoms and behaviours. Parents of TS children often confer mostly with each other and can end up going round and round in circles trying to pin things down, working out parenting approaches and making sense of the collection of 'so called' comorbidities and the confusing and often contradictory literature on TS and it's treatment/provision. I think TS, although a complex disorder involving central processing, needs to viewed holistically, as an integrated whole and not as a bewildering collection of separate disorders. Always beware of over-medicalising developmental disorders like TS and ASD etc. and getting too much into an 'illness' perspective.