Aspies are not eligible for Assisted Suicide at Dignitas.ch

Here is information about eligibility for assisted suidice with Dignitas.ch: http://www.dignitas.ch/index.php?option=com_content&view=article&id=22&Itemid=5&lang=en

Here is a response from Dignitas.ch:

“mental disease” is maybe not a good wording. But, Asperger’s is clearly not a somatic ailment such as cancer, motor neurone disease, multiple sclerosis, etc and so forth, but in fact a psychiatric ailment – which makes things very difficult in view of assisted suicide in Switzerland

 

 

The legal situation in Switzerland as to assisted/accompanied suicide for people who (also) suffer from psychiatric ailments (mental illness) is very complicated. We could fill a book with the details having to do with the law, with court decisions, with several expert expertise, with fierce opposition of psychiatrists and the association of doctor, etc. The core point is: assisted suicide for people who are not terminally ill is not prohibited. However, the prerequisites for someone who does not have a somatic main diagnosis/suffering (cancer, multiple sclerosis, ALS/motor neurone disease, etc.) but also, or rather, a mental, a psychiatric main diagnosis/suffering, are so hard to fulfill, that it is sheer impossible for them to access an accompanied suicide; for us to arrange this.

 

To put it in a nutshell: given that you are mentally competent – which we well presume that you are – we could THEORETICALLY arrange an assisted suicide for you with Dignitas. However, in REALITY, this is a sheer mission impossible.

 

Of the hundreds of requests for a/s by psychiatric sufferers, maybe 2 – 3 per year can be accomplished – and these are Swiss/German ‘cases’ – all documentation in our mother tongue.

 

The core element would be an in-depth report by your psychiatrist, in which he/she would assess your history, your situation and in conclusion, approve of your wish to have an assisted suicide! This, obviously, is something already very difficult to obtain….

 

And, the preparation procedure with Dignitas takes well over a year.

 

Dignitas advocates for accompanied suicide and we feel it to be unjust that quite a number of people are not able to make use of our services, simply because the obstacles are too many. However, as pointed out, we have to face reality.

 

We are sorry that we have little to offer to start with, however, this is what it is for the moment. We recommend that you acquaint yourself with the information provided on our website www.dignitas.ch especially our general info-brochure, available here: http://www.dignitas.ch/index.php?option=com_content&view=article&id=22&Itemid=5&lang=en

 

Finally, may I remind you of the fact that English is a foreign language to us at Dignitas. We are a Swiss organisation and the language spoken here is Swiss/German. But, we try as good as we can to communicate in foreign languages such as English, French and Italian as well – which is an additional effort for us.

 

Here is an excerpt from a subsequent email:

First of all, I should point out that a) I did not mean to offend and that b) I think that in a way, subjectively, there is no such thing as illness, ailment or disorder, as long as an individual does not feel any suffering. So, I totally agree that a person having been diagnosed with Asperger’s (or any other diagnosis) may well lead a happy and productive life. As long as the condition, whatever it may be, does not “get in the way”, does not negatively affect the life of the individual person, there is no problem.

 

We / I do go basically by what the WHO World Health Organisation has set out, in its International Statistical Classification of Diseases and Related Health Problems, 10th Revision, in short ICD-10. There, the definition is quite clear: F84.5 – Asperger syndrome: “A disorder of uncertain nosological validity, characterized by the same type of qualitative abnormalities of reciprocal social interaction that typify autism, together with a restricted, stereotyped, repetitive repertoire of interests and activities. It differs from autism primarily in the fact that there is no general delay or retardation in language or in cognitive development. This disorder is often associated with marked clumsiness. There is a strong tendency for the abnormalities to persist into adolescence and adult life. Psychotic episodes occasionally occur in early adult life.“

 

Of course you are free to disagree with the WHO and the ICD-10 and with Asperger’s being considered a disorder. However, within the ICD-10 classification, it is clearly considered to be a disorder of some kind.

 

However, maybe there are two sides / truths to the coin and it is both: a different wiring of the neurons in the brain as you call it – and a disorder / suffering in the sense of the WHO, from the point onwards that it “gets in the way” and hinders someone to lead a happy and productive life.

 

But, there is no point in philosophy / arguing here and this would not lead anywhere. The point is that if you would want to apply for assisted/accompanied suicide with Dignitas, under the Swiss scheme, you would need to comply with the prerequisites outlined in our info-brochure. And, most important, you would have to provide medical reports, especially an in-depth psychiatric assessment report. Without reports by doctors / psychiatrists, Dignitas would not be able to assess your case, let alone, be able to find a Swiss doctor / psychiatrist who could consider your request for an assisted suicide.

Conclusion: Although people who have Asperger’s syndrome suffer due to lack of acceptance by family and society, we are not eligible for assisted suicide. Why? Because the medical system is advanced in the field of physical medicine… but sadly in dark ages when it comes to understanding the human mind.

You may benefit by reading Phil Wylie’s Psychobiography. Check out phil at phil dot asia!

 

 

What is ‘Late Diagnosis”?

Here is an excellent answer to the question, ‘what is late diagnosis?’

The Difference between a diagnosis and Late diagnosis follows:

A diagnosis is something which give’s perspective and provides explanations. It is a starting point for working with that person to support that persons growth into becoming a balanced and stable human being.

A late diagnosis is when a person has now developed a profile of wrong perspectives and wrong explanations so that person’s perspectives of himself are totally false. This can cause a great deal of fallout, grief not to mention a very severe identity crisis once the diagnosis has been made.

Author: Rod Wintour, New Zealand

Thanks, Rod, this is a very helpful definition.

The Nine Degrees of Autism: A Developmental Model for the Alignment and Reconciliation of Hidden Neurological Conditions

The Nine Degrees of Autism is a new developmental model which applies to people who are on the autism spectrum or who have other hidden neurological conditions.

Other hidden neurological conditions served by this developmental model include Dyslexia, Dyspraxia, Aphasia, Semantic Pragmatic and ADHD. The model may also apply to individuals who have Tourette’s syndrome, pathalogical anxiety and Bipolar disorder.

A common consequence of having a potentially hidden neurological condition is delayed self-identification and diagnosis. Some individuals are diagnosed as having a neurological condition during infancy, but many are diagnosed after the age of twelve. Moreover, there are still many middle-aged or older people on the autism spectrum who remain undiagnosed because they were not screened for autism as children.

Without a diagnosis or suitable support, the individual with a hidden neurological condition is vulnerable to adverse environmental issues which inevitably cause mental health issues and identity alignment, which they may experience positively as relief or negatively as a ‘mental breakdown’.

The adverse environmental factors that affect people who have hidden conditions include ridicule, bullying, being treated as inferior, being passed over in the employment market, and exclusion by society. Such detrimental conditions, which arise from a society that is intolerant of neurological diversity, can cause severe mental health issues.

Common mental health issues affecting individuals who have hidden neurological conditions include sadness, depression, insomnia, stress and social anxiety. The main cause of mental illness is societal prejudice and intolerance of neurodiversity rather than the individual’s primary neurological condition.

Identity alignment is the process of revising ones self-identity after identification of a hidden neurological condition. This experience is commonly understood as a mental breakdown, though it can be experienced positively, especially after individuals receive multiple misdiagnoses.

The Nine Degrees of Autism developmental model tracks the individual’s journey from birth through to wellbeing, mastery and empowerment in nine succinctly defined stages. A key advantage of this roadmap is its clarity and simplicity. Also, because it is directed towards a positive outcome, it promotes wellbeing and good health for people who have hidden neurological conditions.

The model comprises three primary developmental states, which are:

- Pre-identity Alignment (dis-ease)

- Identity Alignment (the transitional state)

- Post-Identity Alignment (wellbeing)

Each primary developmental state consists of three secondary developmental stages.

The three secondary developmental stages during pre-identity alignment are:

- The First Degree of Autism: Being born with autistic genes

- The Second Degree of Autism: Knowing that we are different (without understanding why)

- The Third Degree of Autism: Struggling to fit into society (and possibly pretending to be normal)

The first three degrees of autism occur between the individual’s birth and self-identification of their neurological condition. People usually experience these stages as confusion, doubt and struggle.

The three secondary developmental stages during identity alignment are:

- The Fourth Degree of Autism: Self-identification

- The Fifth Degree of Autism: Consideration of accessible lifestyle options

- The Sixth Degree of Autism: Resolution to live with the neurological condition

Identity alignment occurs between self-identification and self-acceptance of the individual’s revised self-identity. The chronology of identity alignment varies from weeks, months or years, depending on the age of self-identification and the availability of support.

The word ‘Diagnosis’ encompasses self-identification and both appropriate and timely post-diagnostic support, without which psychiatric labels are meaningless. Unfortunately, the use of negative medical labels that suggest disorder, disease or illness are extremely damaging because they support toxic stigmas and exclusion of people who are considered ‘different’ by society.

Late diagnosed individuals are inevitably more vulnerable to identity alignment because they have lived longer with a false construct of self-identity. For example, a person who perceives him or herself as normal, healthy and intelligent would need to revise their self-image radically after self-identification of the neurological condition.

 

The three secondary developmental stages during post-identity alignment are:

- The Seventh Degree of Autism: Self-Acceptance

- The Eighth Degree of Autism: Unconditional Service to Society

- The Ninth Degree of Autism: Mastery and unity

Therefore, the final three secondary developmental stages of the model relate to positive health, wellbeing, and service to society. The prerequisite for success during post-identity alignment is positive intent and unconditional service to society.

It is hoped that this model will allay many myths surrounding hidden neurological conditions. The Nine Degrees of Autism is an ideal educational tool for charting the developmental process of neurological conditions. Also, because this model offers a roadmap with a positive outcome, it will facilitate positive mental health of people with hidden neurological conditions.

HELPFUL THOUGHTS

 

After diagnosis we are likely to experience some depression and sadness, particularly if we are without support and lacking financial and emotional resources, because it may be difficult to see a way to survive in the future.

The one-sided DSM, which categorises ASD as a disorder that manifests in numerous impairments without mention of the gifts inevitably compounds feelings of despair and hopelessness. To counteract the negativity surrounding ASD, here are some helpful thoughts:

“Although there is endemic prejudice towards people who have ASD today, there will inevitably be less bigotry in future, when the medical and health professions understand the nature of autism.” In December 1973, the American Psychiatric Association voted to eliminate homosexuality per se as a mental disorder and to substitute a new category titled Sexual Orientation Disturbance. Women and coloured people were also victims of discrimination but now they are accepted by society. Likewise, autistic people will be accepted by society eventually.

“Our situation cannot get any worse, so let’s ‘tread water’ until things get better.”

“We may be able to serve society by helping other autistic adults; such active service may be deeply fulfilling.”

“As we learn more about Asperger’s syndrome (ASD), we will become increasingly aware of our strengths (or gifts) and enjoy the company of fellow autistic individuals.” For example, Sarah Hendrickx lives happily in the South of England without needing to make contact with many NT’s.

 

Let’s acknowledge to ourselves that we managed to survive until today against the odds and without any meaningful support.”

“It’s not a crime to be different; in fact, Neurological diversity is healthy for society. However ignorance and discrimination are extremely unhealthy for society.”

“One day our voices will be heard!”

 

Quality of Life for Aspies

This is a post about quality of life and why many autistic people prefer not to live on this planet right now.

Better late diagnosis of Asperger's than never?

Better late diagnosis of Asperger’s than never?

Women, gays and coloured people have probably suffered humiliation comparable to that of autistic people right now – but unfortunately autistic people do not have the social or communication skills to do much about it…. Are we ‘sitting ducks’ in the game of life?

John Lennon and Yoko Ono wrote the song, ‘Women are the Niggers of the World’ in 1972 to a critical audience. However, Harvey Milk et al managed to get homosexuality removed from the American Psychiatric Association’s DSM during the 1960′s… but autistic people have an uphill struggle to achieve equality.

The fact is that we live in a material world – Madonna was right! – so we are evaluated according to our economic contribution to Planet Earth. However, there are many shortfalls with our current system which places economic output as our primary goal.

Have you considered the following ‘madness’:

- Probably the greatest contribution we can give is love towards our children, but sadly this gesture falls outside of the economic system. Loving and teaching young children is the probably the most important job on this planet, yet it is not recognised. Why are there no schools to prepare young mothers for their important contribution to this world?

- The most profitable activities on this planet are unethical, including drug smuggling, human trafficking and war.

There are many other examples of how the economic system limits us, but I think you ‘get it’ already!

Now, I want to remind you that many people who are autistic have above-average intelligent, yet we are discriminated against for being ‘different’ – nothing else.  Please recognise this behaviour as bigotry.

Autistic people have a certain kind of parents. What can we do about it?

- Very little?
- Suicide

Yes, many autistic people commit suicide because our quality of life is so bad, and we are discriminated against. We may not look good. We probably sound appalling. And we are not politically correct. Additionally, we have no allegiance, no group to follow, probably no family to help us … alas, we are probably alone!

What would you do if you cannot find any way to make a mark on the world?

Or, if you cannot find family or friends to support you through a difficult time?

Or, you simply cannot make a living due to your intellectual disability?

Suicide is a logical answer for many autistic people because we are logical beings. Meanwhile, the politicians are focused on getting disabled people to work -  they have no idea what we are experiencing!

WE ARE LITERALLY WITNESSING THE GENOCIDE OF THOUSANDS OF AUTISTIC PEOPLE BECAUSE NOBODY UNDERSTANDS US. CHECK OUT THIS SURVEY.

 

HOW TO RESEARCH YOUR FAMILY FOR THE GENETIC PATHWAY OF AUTISM

Anyone who has Asperger’s syndrome (relabeled by DSM5 as Autism Spectrum Disorder) would benefit by understanding how they inherited their condition. Indeed, autism clinician Tony Attwood believes that Auties need to understand why things happened before we can achieve closure and move on without resentment.

 

The genetic flow of autism in our family tree

The genetic flow of autism in our family tree

Adults who are diagnosed very late in their lives are often unable to discuss these delicate family issues with family members. Over half of the parents of late diagnosed Aspies refuse to discuss the genetic pathway of autism in the family.

There is another important issue which impedes our research. Unfortunately, none of the psychiatrists, doctors, diagnosticians, psychologists or autism support works will help us identify the pathway of autism in our ancestry because they fear upsetting our parents’ feelings … and they are scared of being sued too. This is where the medical profession has a cosy relationship with parents of Auties, and sadly, this cartel is preventing progress in the field of autism.

Naturally, this research is much easier to carry out when we have cooperative parents, siblings and other family members. But there are some simple methods of tracing the path of autism in the family without discussing it with family members.

Tony Attwood suggests mapping out our family tree and ascribing an Aspie percentage for each member of the family. A score of zero would go to a wholly Neurotypical person like Madonna, and a score of 100 to a typical Aspie.

It’s important to realize that autistic families usually experience co-morbidity with other neurological conditions, such as dyslexia, dyspraxia, schizophrenia, Narcissism Personality Disorder (NPD) and Munchausen’s by proxy. Also, autism affects women differently from men. Autistic women tend to be more masculine than most neurotypical women; and autistic men may appear effeminate or androgynous.

There is also a very powerful ‘law of attraction,’ which brings together ‘birds of a feather’. Auties often attract fellow Auties, but we can also attract predatory types who have NPD or even psychopathic Personality Disorder (PPD). Predatory people enjoy inflicting pain on their victims because they lack affective empathy, but unfortunately Auties lack cognitive empathy, so we find it difficult to identify these predators.

People who were diagnosed with a hidden neurological condition late in life (or never) are likely to have developed mental health issues such as social anxiety, stress, depression, and insomnia. These mental health issues can provide us with additional clues.

The following clues can help us to identify the path of autism in our family:

- Evidence of social awkwardness, eccentricity or introspection

- Gender diffusion or androgyny, and sexual deviance

- Insomnia, evidenced by the use of sleeping tablets

- Self-medication using alcohol and other drugs to counter anxiety

- Spouses may sleep in separate beds (or even separate bedrooms) due to sensory overload or tactile issues

- Some family members may have been moved from school to school due to educational problems

- Evidence of special or obsessive interests

Using these clues together with a basic understanding of the usual autistic traits, it can be quite easy to identify the genetic pathway of autism in the family without upsetting anyone or consulting with medical professionals.

ARE AUTIES GIFTED OR DISABLED?

I asked Ex-Sun political columnist Toby Young why the media tends to portray Auties as disabled rather than gifted, and dangerous criminals instead of unduly honest and ethical to a fault.

Is Toby young disabled?

Is Toby young disabled?

Here is Toby Young’s reply, “I thought the problem was that Auties are too often presented in films and elsewhere as supernaturally gifted, rather than just routinely autistic. Like Tom Cruise in Rain Man. I always thought that was objectionable because it was presenting us with a false reason to reconsider our attitudes towards people with autism. In reality, most Auties aren’t gifted. They’re disabled.”

People who have Asperger’s syndrome usually have gifts and/or special interests as well as impairments. Typically, the Autie’s gifts include above-average ability in the following areas: systemisation, abstract thinking, ‘seeing the wood for the trees’, mapping the big picture, focusing for long periods on ‘mono-tasks’, and making sense of complex data sets. Special interests can be extremely narrow in focus but highly diverse in nature.

It’s probably not necessary to mention the Autie’s impairments because the medical profession and media broadcast them 24/7 – but they include social and communication skills, and vulnerability to sensory overload.

Both disabled and gifted people usually need special support for their condition. Whether society supports or values us influences our mental health and our ability to improve the world in our unique way.

Similarly, if we neglect a motor vehicle and fail to maintain it properly, eventually the vehicle will break down. Likewise, Auties who are valued and cared for tend to harness and commercialise their skills and some leave a legacy behind them.

Autism support worker Sara Heath of AutonomyPlus says that autistic people are disabled by specific events which cause stress and anxiety. So, whether an Autie is gifted or disabled depends upon environmental factors which they cannot control.

“On a good day, with no stress, and when you understand what you are expected to do and are in control, then you are actually enabled and even buzzing! You will have a clear sharp minds, be a high achiever and your autism traits will be almost invisible. Your eye for detail and your tenacity will be an advantage too. You will communicate well and be almost flexible…95% able.” says Sara Heath.

Sara Heath continues, “On a bad day, with lots of stress, and when you do not understand or cannot put what you need to do into the right context – you will become more rigid and inflexible and as the adrenaline rises, the autism traits will become more visible and disabling. Your head will be muzzy and your thoughts cloudy and indistinct, you will struggle to talk and to communicate and to achieve even basic tasks, your perfectionism and eye for detail and your inflexibility will make it worse. 95% disabled.”

It’s society that disables Auties by not understanding us properly and not providing adequate support. Under the Equality Act 2010 a person is disabled if they have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on their ability to carry out normal daily activities.

There are two main viewpoints about people who have Asperger’s syndrome (or Austism Spectrum Disorder): The medical viewpoint and the social viewpoint.

The medical viewpoint is that AS is a disorder or disease, and that Auties are ‘cured’ if they mimic the behaviour of neurotypical (NT) people. The medical model does not take account of adverse environmental factors, such as prejudice and bullying, that causes low self-esteem and mental ill-health.

The contrary viewpoint is espoused in the social model of autism which treats Auties as a different culture who think and behave differently from NT’s, but who do not need a cure because Auties cannot change their neurological condition. The Social Model of autism believes that Auties have both gifts and impairments, and that their mental health can be improved by a supportive and accepting society.

Therefore, the social model of autism does not label the condition as a disorder or disease because it is simply a different way of thinking that cannot be changed. If autistic people are properly cared for and supported they would not experience mental health issues – and they will be enabled rather than disabled.

If society wants Auties to be more productive, people should treat us better. It really is that simple.

Toby Young, who claims that he may have Asperger’s syndrome before the American Psychiatric Association removed this ‘disorder’ from the psychiatrist’s bible ‘DSM5′, believes that Aspies are disabled. How many disabled people apart from Toby Young have worked for The Sun nowadays? And I wonder whether The Sun newspaper just recruits Aspies from aristocratic families – because Toby’s dad is a life peer, known as Lord Young of Darlington.

Interview with Tony Attwood

Interview by Philip Wylie
Date: 24 October 2013

Q1: What are the chances of an undiagnosed Aspie being successful (without self-knowledge of his or her neurological condition)?

The odds are stacked against them (undiagnosed aspies) because they may make unwise decisions made on the basis of their strengths rather than weaknesses or what other people expect. If they have been successful, it has been through a supportive relationship partner who gives them the moral and emotional support, guidance and confidence they needed.

Another related question is how can Aspies cope with the ignorance and prejudice of other people towards people who are different? Some people are kind and supportive, whereas others can become predatory – so the problem is not limited to coping with Asperger’s; the greater problem is coping with other people. People with AS don’t suffer from their neurological condition, but they do suffer from the attitude and ignorance of other people. In my clinic I refer to ‘the Psychology of Predators’. The person with Asperger’s cannot have closure of their concerns until they understand why they are victimized, passed over for jobs, failing job interviews and not being successful in their relationships. I explain the psychology and motivation of other people otherwise there tends to be either negative self-evaluation or anger towards the thoughts and actions of other people. Both ways are not constructive ways of dealing with the situation. Aspies can defuse the anger through accessing knowledge and appropriate information. I describe Asperger’s as a different culture, so Aspies need a translator between the two different cultures. It’s not so easy for people with Asperger’s to avoid the predators because they are literally everywhere, whether in the office or at the church, so it’s almost impossible to avoid them. The predators have an ability to identify relatively vulnerable targets.


Q2: Is AS or autism inherited genetically?

Half of the AS population inherited their condition genetically and it’s possible to see a family line of autism. Secondly, it may involve genetic material, but not inherited. For example, Downs syndrome is caused by genetic material that is not inherited. Then there is another group for which genes are not the cause, but something in utero or early childhood affected the child’s brain. These three pathways need to be recognized.

Q3: If AS is inherited genetically, wouldn’t diagnosis be facilitated by investigation of the family’s ancestry?

This is useful information for parents of ASD children who want to know about the likelihood of having another ASD child. This is what geneticists call ‘penetration of the family line’. If the genetic markers are identified, my concern is a eugenics approach of cleansing racial purity by getting rid of potential geniuses of the future. Most of the people who made major advances in art and science have Aspergic characteristics. To be successful as a species we need neurodiversity. If we use an analogy with Star Trek, we need Balkans.

Q4: Why don’t we use genetic testing to diagnose Asperger’s?

Simply because we don’t know what are the genetic markers. Research is underway, but it will probably be multiple genetic markers. We may however be able to identify the risk of ASD in young children during their first two years of infancy but doubtful in utero.

At some stage during the primary school years, the child will realize he or she is different. The questions is how the childpsychologically reacts to their perceived differences. In my book, The Complete Guide to Asperger’s, I refer to the internalizers of depression and escape into imagination, or the externalizers who have inflated self-esteem and arrogance, or those who imitate and ‘fake it’. Depression and anger are not recommended. So it’s really to prevent secondary mood disorders and personality disorders. Sometimes it’s the pathway of a personality disorder that leads to the diagnosis of Asperger’s syndrome. The main personality disorders caused are Borderline personality disorder (especially for women), Narcissistic personality disorder, Schizoid personality disorder and other disorders like Pathological Demand Avoidance disorder. How the person sees themselves will determine in part what their pathology will be if they are not give appropriate support and true understanding. A Borderliner is someone who feels a sense of betrayal in relationships when friends move on, intense emotions and intense despair. Quite a few late diagnosed females who have Asperger’s were diagnosed previously as having Borderline Personality Disorder. Narcissistic Personality Disorder (NPD) occurs more in males who have an over-compensatory sense of arrogance. So depression is low self-esteem, whereas NPD is inflated self-esteem. The imitation group (who wear a mask and pretend to be normal) tend to have Multiple Personality Disorder.

People with Asperger’s either see themselves as being defective or superior. It’s very comforting to think of oneself as superior, especially if you have a talent in mathematics, science or art.

Q5: If an infant has attachment difficulties with his / her mother, is this a red flag for autism?

We look to see whether the mother is giving appropriate signals of bonding, interaction and affection. But the child may be reading these signals or find contact aversive due sensory sensitivity. So with Reactive Attachment Disorder we have a parent who creates within the child the isolation and psychological problem due to parenting issues. Here it’s more a matter of the infant reading and understanding the interpersonal signals but also finding touch aversive. Sometimes affection is given in the form of touch which the person finds aversive. That’s what happened with Temple Grandin. She craved affection but when her mother touched her, it was most uncomfortable. That was tactile sensitivity, not an aversion to her mother at all.

The mother senses very early on that her child is different and then makes various accommodations. The differences can be spotted during very early childhood if you look carefully. But you have to know what to look for.

Q6: What are the probable consequences of very late diagnosis of Asperger’s syndrome?

Psychopathology, depression, issues of legal and illegal drugs to self-medicate, stress, anxiety disorders, also medical disorders that are due to stress (such as gastrointestinal problems, headaches and exhaustion), issues relating to career choices and success, and relationship issues. There can also be issues of anger management because you either internalize it and blame yourself causing an implosion, or explode with anger towards others for being illogical or inconsistent. The risk for individuals with such high levels of anxiety and being aware of their social confusion is to reduce anxiety and create a bubble of security and safety through use of alcohol and marijuana. Initially these drugs serve as medication for anxiety but also as a relaxant in social situations (or to be ‘comfortably numb’). This combination of self-medication can be dangerous for people with Asperger’s because in order to cope they need to use their frontal lobe. The frontal lobe is dissolved (deactivated) by alcohol and marijuana. Therefore the part of the brain that is needed for social reasoning is deactivated after using these substances, so their coping mechanism has been removed.

The value of anti-depressants lies in its quality and being less dangerous because intoxication does not occur. The person needs help with emotional management. I would prefer that patients use prescribed drugs rather than misuse legal or illegal drugs. I also advocate psychological support for dealing with emotions.

Q7. What are the likely consequences of not providing adequate support to an autistic child?

What a terrible waste of talent! He or she would lead a life of misery when they could have a good and productive life. We need the Aspies!

Q8. Can mental ill-health be prevented by appropriate and timely intervention during childhood?

Yes. There would be less chance of developing clinical depression, being bullied, alcohol and drug use. One of my great concerns is that the psychiatric services for adults really do not understand Asperger’s syndrome. They need the training as well as the attitude shift and it is rare for a person with Asperger’s to actually benefit from admission to a psychiatric unit. I have never actually encountered a single autistic person who benefited from admission to a psych hospital (and I have been working in this field since the 1970s). Psychiatric units have an adverse affect on people who have Asperger’s because the staff don’t know about AS and they may not understand that Aspies don’t work well in groups. Thirdly, the person is in the company of other people who are emotionally challenging, volatile and extreme, which is very upsetting for the person with Asperger’s. What they are seeing is an asylum in the old sense of the word, and a lunatic asylum is not relaxing. If you are in one, it’s full of people with intense emotions and interpersonal difficulties, and the person with Asperger’s does not know intuitively the ground rules of this new culture. So they feel like they are on another planet: Planet Psychiatric Hospital. I do everything I can to keep people with Asperger’s OUT of psychiatric hospitals.

Q9: Is it fair to judge an Aspie’s behaviour if he is experiencing a mental breakdown or involuntary meltdown?

Neurotypicals have never experienced Asperger’s so their attitude is ‘Pull yourself together!’ or ‘Calm down!’ without realizing that it’s not going to work.

For many years the Aspie has experienced intense emotions and when they receive the diagnosis there is a paradigm shift and a complete re-evaluation of self. The trauma of this paradigm shift affects people in different ways. Some are relieved, others are traumatised if they feel uncertain about the future because most people with Asperger’s find it difficult to adjust to change. However there can be a sense of euphoria after realising that we are not psychotic or mad. But it brings all the emotions to the fore of ‘why do I have to deal with this so late in my life?’ This should have been identified by professionals in the past. How will my life change because now I have to explain myself to people who don’t seem to understand my problems?

People with AS are not good at describing our inner thoughts and feelings to others. Often this means that emotions are swirling around in our mind but we have difficulty grasping them, defining them, and disclosing them to others. Self-reflection. So the person is going through all sorts of changes so they need lots of support. After diagnosis the person needs counselling to come to terms with his or her revised self-image, but often diagnosticians don’t offer such services.

Q10: Can very late diagnosis of AS cause a mental breakdown or traumatic crisis?

Yes. Their whole concept of self and explanation for past experiences – the scaffolding that kept them going – has now gone. It’s a huge paradigm shift with an alternative that they have yet to discover and use constructively. There is a mind-body division – a difficulty of the brain connecting to the physical body – and this will be eventuated during this crisis, so the person is likely to be in a very psychologically confused state, needing support and understanding, which is often not available. The diagnostician should explain why the person was bullied and confused in the past, as well as explaining how their gifts can help them for the future. However, many clinicians in the UK lack the necessary knowledge; they may know how to perform the diagnosis but they don’t understand the Aspie mind.

Q11: In your experience, is at least one of the Aspie’s parents unable to love or be empathetic?

There are three forms of empathy:

- Cognitive empathy (lacked by people with AS)
- Emotional response to the despair of others (people with AS have a lot of this)
- Reaction (not knowing how to respond, fear of failure, confusion)

Like to Love is a new book by Tony Attwood (JKP) about affection.

There is a breakdown in communication of affection. The child may be overwhelmed about affection. Some mothers overcompensate and give more affection, but this strategy does not work. More overwhelming for the child.

Tony is trying to promote psychotherapy for Aspies by Aspies.A new model specifically for Aspies.

Tony Attwood’s website address is www.tonyattwood.com.au.

WHY IS THE INTERNET SO BIGOTED?

1.      Due to the bigotry of the internet – to be fair, the staff at Google probably has no idea about psychiatry – it pays to lie and not be transparent about any neurological conditions we may have.

endemic online bigotry

endemic online bigotry

        The Suffragettes, gays and coloured people have experienced bigotry, but the internet seems to be a dumping ground for misinformation and prejudice towards people who have Asperger’s syndrome, a form of autism.

Let’s take the example of Aspie John Smith who has just applied for a job as an auditor with XYZ Auditors. Gayle, the HR Manageress, conducts a Google search on John Smith to learn a bit more about the prospective employee.

Gayle learns that John Smith has a neurological condition known as Asperger’s syndrome, but she doesn’t know about it so she conducts another Google search to find out what it is. Using the keywords, ‘Aspergers syndrome’, the following webpages appear:

Asperger syndrome - Wikipedia, the free encyclopedia

en.wikipedia.org/wiki/Asperger_syndrome

Asperger syndrome (AS), also known as Asperger disorder (AD) or simply Aspergers, is an autism spectrum disorder (ASD) that is characterized by significant 

Autism spectrum - Prosody - List of people with autism - High-functioning autism

2.    What is Asperger’s Syndrome? Symptoms, tests, Causes, Treatments

www.webmd.com/brain/autism/mental-health-aspergers-syndrome

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Learn more from WebMD about Asperger’s syndrome, an autism spectrum disorder that affects language and behavioral development in children.

3.                               Asperger’s Syndrome Symptoms in Children, Teens, Adults – WebMD

www.webmd.com/brain/autism/tc/aspergers-syndrome-symptoms

 

Apr 12, 2010 - Although there are many possible symptoms of Aspergers syndrome, the main symptom is severe trouble with social situations.

Asperger’s Syndrome - Sensory integration dysfunction

4.                               Asperger Syndrome Fact Sheet: National Institute of Neurological 

www.ninds.nih.gov › Disorders A – Z › Asperger Syndrome

Asperger syndrome (AS) is an autism spectrum disorder (ASD), one of a distinct group of complex neurodevelopment disorders characterized by social 

5.                               Asperger’s syndrome - MayoClinic.com

www.mayoclinic.com/health/aspergers-syndrome/DS00551

Asperger’s syndrome — Comprehensive overview covers symptoms, treatment for a disorder affecting communication, social skills.

6.                               Asperger Syndrome - KidsHealth

kidshealth.org › Parents › Diseases & Conditions

Asperger syndrome (AS) is part of a group of diagnoses called “autistic spectrum disorders” - developmental disabilities that include autism and other disorders 

7.                               Asperger Syndrome | What is Autism? | Autism Speaks

www.autismspeaks.org/what-autism/asperger-syndrome

John Elder Robison, a member of Autism Speaks Scientific Advisory Board, describes his experience learning about and living with Asperger syndrome, which 

8.                               What is Asperger syndrome? – | autism | Asperger syndrome |

www.autism.org.uk/…asperger-syndrome…/what-is-asperger-syndrome.a…

Asperger syndrome is a form of autism. People with Asperger syndrome may find difficulty in social relationships and in communicating.

9.                               Autism New Zealand Inc. – Home

www.autismnz.org.nz/

Autism New Zealand Inc. provides support, training, advocacy, resources and information on Autism Spectrum disorders including Aspergers Syndrome.

10.                            What Is Asperger’s Syndrome? – Medical News Today

www.medicalnewstoday.com/articles/7601.php

                                      

Oct 31, 2013 - Asperser’s syndrome, a developmental disorder, is an ASD (autism spectrum disorder). It impacts on the individual’s ability to communicate and 

11.                            Images for Aspergers syndrome

Notice that all the information listed for Asperger’s syndrome is negative. The natural gifts that come with Asperger’s syndrome are nowhere to be seen. Gayle would conclude that John Smith has a disease or disorder that disables him from functioning or communicating properly. Naturally Gayle would perceive this Aspergic candidate as HIGH RISK, and because she wants to keep her job, she would not recommend John Smith for a second interview.

What should people with Asperger’s do then?

A. Refrain from being transparent on the internet (ie lie)…?

B. Lobby Google and other search engines for an end to this bigotry…?

C. Give up trying to be independent and live off government benefits… NOT!

Interview with Michael John Carley

Interview by Philip Wylie, 16 November 2012

 

Not many people on the autism spectrum are as successful as Michael John Carley, who discovered his Asperger’s syndrome (AS) while on holiday in Mexico in 2000. Michael’s diagnosis at the age of 36 came shortly after he became aware of his son’s AS condition. Since then, Michael has immersed himself fully in the Asperger’s world, founding the New York-based not-for-profit Global and Regional Asperger Syndrome Partnership, abbreviated as ‘GRASP’.

The autism community has moved a long way since the condition began to be recognised and publicised, thanks to organisations such as GRASP. Michael comments, ‘We have done an astounding job at making the world a much more behaviorally permissive place, without which there would be no ‘anti-bullying campaigns’ or tolerance of behavioral pluralism today.’

‘When I was a kid it was totally okay for the hero in the movie to push the Weird Guy around’, says Michael. ‘Later, the Weird Guy was the hero’s ‘tolerated sidekick’; then the Weird Guy became the respected sidekick of the hero. Now, the Weird Guy gets his own movie because cerebral activity – such as solving Fermat’s Theorem – brings sexiness, like something you would see in a James Bond action movie.’

In 2001, shortly after his own diagnosis, Michael took over the Adult Asperger Syndrome Support Group of New York, which grew from a membership of just 13 to more than 300 in two years. In 2003, GRASP was formed from a generous grant and fellowship provided by the FAR Fund, based at the Fund for Social Change in New York City. Now GRASP’s chapter organisation provides 27 facilitated support groups for people on the autism spectrum across America and Canada.

As executive director of GRASP, Michael quips that its membership is severely ‘economically challenged’. An estimated 80–85 per cent of autistic people do not work and GRASP members therefore lack disposable income. So, it is a great achievement that the organisation is still growing and empowers a membership of more than 8,000.

GRASP’s sister organisation, the Asperger Syndrome Training and Employment Partnership (ASTEP), provides training and consultancy for employers and educates them about the benefits and limitations of employing people on the autism spectrum. Certainly, the Obama administration has served ASTEP’s interests by introducing legislation that requires 7 per cent of Federal contractors’ payroll to be allocated to disabled people. Michael’s response is, ‘Awesome! But unrealistic.’

 

Michael vividly remembers the moment when he realised that he had Asperger’s syndrome. He was taking a surfing holiday in Cabo, Mexico, and one evening, against his nature, visited a nightclub. Michael’s book, Asperger’s from the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome, describes this moment: ‘As the doors opened, I was jolted by the sudden acceleration of volume, and by the sight of hundreds of people, mostly young, swaying, gyrating, sweating, and drinking recklessly on multiple floors.’

It was during this moment of sensory overload in the Cabo nightclub that Michael realised with absolute certainty that he had Asperger’s syndrome. The visual freeze-frame of hundreds of twenty-to-thirty-something party revellers, all moving to pulsating bass tones, is etched on his brain. This milestone was a turning point in Michael’s life and within a month he had received a formal medical diagnosis of his AS condition.

That ‘eurekamoment’ in Cabo was essentially exciting for Michael because he knew that he was onto something big. Already an avid reader, he threw himself wholeheartedly into researching his new Asperger’s syndrome identity. Later, after starting GRASP, he would listen to hundreds of unique stories of other people diagnosed relatively late in their lives.

Michael describes a typical scenario of how older people are initially identified as having Asperger’s syndrome. ‘Sally works on a farm and one day she reads a magazine article about Asperger’s syndrome; then suddenly she gets the insight: “Hey, that’s bachelor Uncle Fred!”’ Thanks to the not-for-profits – GRASP, Autism Speaks and The Autism Society of America – an article about autism is published every four minutes in America, enabling more of the undiagnosed population to gain an insight into their condition.

Unfortunately, not all societies are as well informed as America. In some cultures, Asperger’s can even be a life-threatening condition – for example, when the tribal chief pronounces that the individual is possessed by evil spirits and must be killed. With time, these informative articles about autism will literally save lives.

‘There are going to be times of depression after receiving a positive diagnosis of AS, but the overwhelming effect of the self-realization process should be positive’, says Michael. After his own diagnosis, Michael realised that it was wiring in his brain that caused his quirky behaviour, not his character. Instead of carrying on pretending to be normal, or ‘neurotypical’, this valuable self-knowledge enabled him to access various toolboxes (both on- and off-line) to validate his condition. Maintaining a pretence of normality can often be disempowering.

Although the Cabo nightclub experience was Michael’s ‘tipping point’ during his journey of self-realisation, he believes he has progressed through many different levels of personal awareness. As he collected more information about Asperger’s syndrome, he became clearer and more confident about his condition.

On the other hand, self-awareness of Asperger’s syndrome can make us feel lumped into ‘a cold stigmatizing mark of something broken’, says Michael. These inhumane and intolerant social stigmas can be extremely damaging for the individuals concerned and for society too. However, Michael believes that the positives of diagnosis greatly outweigh the negatives. For example, he now realizes that he processes information differently from most other family members.

Michael refers to his previous job as ‘minor-league diplomat’ for America, and luckily it involved meeting people who perceived his eccentricities positively. This is not the case in many professional and commercial organisations, but in Michael’s ‘stupid day-job’, which he loved, people would say, ‘He’s like that because he’s very talented’ or, ‘He’s very smart.’ Discovering that AS explained his quirky behaviour, he says he realised that ‘I wasn’t that smart after all!’

Michael is very modest about his evolutionary path to self-acceptance, believing it is unimpressive compared with the journeys that many of GRASP’s members have made. He also believes that he was lucky in his choice of career and the people he met along the way.

Success is relative, according to Michael, who believes that we should not judge a person by the cards they are dealt, but by how well they play those cards. The baseline for measuring success is your position in life on the day of diagnosis because that is the first day of the rest of your life!

When Michael attended his first autism support group, he found himself in the company of people who were ‘significantly more affected’ than he was. Initially petrified by the group, he began to notice the exaggerated gestures of group members compared with his own nervous mannerisms, which had been pointed out to him during his childhood.

It is generally more difficult and expensive to provide a diagnosis for adults than for children. This is particularly so if there is no contact with parents or other relatives because there is then less evidence available to confirm the genetic path of autism in the family.

Also, though, Michael says that many adults who are assessed later in life for Asperger’s may – through prolonged pain and struggle – have learned to overcome some of the ‘differences’ that are listed on the diagnostic clinician’s checklist. For example, some actively learn to look other people directly in the eye, perhaps after critical comments from peers or family members.

After Michael’s formal diagnosis, his anticipated relief at having such a weight lifted from his shoulders suddenly disappeared. He remembers standing on the sidewalk experiencing a barrage of negative thoughts and describes these moments of sadness in his book:

In that moment of diagnosis, the euphoria I’d predicted and started to feel was quickly metamorphosing into a fast – moving hurricane of negativity – a monumental sadness with the realization that, “Yes, you were all alone your whole life! You do not belong in the same category as these other people! You do not have that sense of shared experience … with anyone!”’

However, Michael, who has always had a strong sense of self-worth, did not remain in that dark place for long. Typically, post-diagnostic depression lasts between two and six months, but Michael’s experience was much smoother than most.

Regardless of the painful emotional reactions and the need to cope with toxic stigmas, Michael is a brazen advocate of formal diagnosis and Aspergian pride. He says, ‘What is truly overwhelming is the flood of new information the diagnosis brings – the new interpretations not only about yourself, but also about the people around you. This is not bad news – this is good news. Maybe the best you’ve ever had.’

Although Michael’s identity crisis was milder than most, it is worth noting that he actively decided to face himself in the mirror – at least partly for the sake of his young son. Surely, having a father who is willing to share a potentially confusing and traumatic journey is the greatest gift an autistic son could receive? Michael’s son was never alone with exploring his condition because father and son took the journey together.

When asked how many fathers of autistic sons are willing to be assessed for the same condition, Michael estimates about 40 per cent. The remaining 60 per cent may or may not understand the condition and be capable of supporting their child through it, but they prefer not to identify with Asperger’s syndrome personally.

Denial of autism by parents and other relatives is common because the condition is genetically inherited and because it is potentially embarrassing, provoking stigmas that are unjust and downright mean. Most of Michael’s family did not want him to seek a diagnosis, and some wanted him to keep the outcome a secret. Michael says, ‘We have to remember that, because of the genetics involved, and because of the new interpretations of the past that will have to be explored, we are not the only ones affected by our diagnosis.’

Michael followed the guidance of autism authors, Dawn Prince-Hughes and Liane Holliday Willey, to maintain a post-diagnosis journal. For four and a half months, he recorded his experiences in a private diary, noting all the changes he went through and the important insights he experienced along the way.

Another way to assist the post-diagnostic healing process is to attend a local autism support group. These groups – such as the ones organised by GRASP – enable adults on the spectrum to share their experiences with one another. However, be warned that group members are highly disparate individuals offering a diverse spectrum of fertile viewpoints!

Very few people with Asperger’s venture far from home, but there are massive benefits of living in a foreign culture. Michael comments, ‘Very often our differences are not looked upon with so much disdain in another culture. ‘He’s a foreigner! That’s why he is different!’ they say. So, you are given more of a ‘behavioral pass’ in another culture.’ One way to escape the negative judgements that arise from bigotry and ignorant stigmas is therefore to live overseas.

Accepting a new identity (or self-image) inevitably involves a crisis and a period of healing until we have fully accepted the change. Michael embraced this challenge wholeheartedly and changed his job from minor-league diplomat to high-level ambassador of an international not-for-profit organisation that represents over one per cent of the global population. His background in diplomacy and as a playwright enabled him to hone his presentation skills and become an articulate spokesperson for the autism community at large. He is passionately devoted to helping autistic individuals accept their differences and ultimately to breaking down all social barriers between autistic and neurotypical people.