Very Late Diagnosis of AS Guidebook

The guidebook, very late diagnosis of Aspergers by Philip Wylie has been published by
Jessica Kingsley Publishers.  Feedback has been excellent:

Very late diagnosis of asperger syndrome  by philip wylie

Very late diagnosis of asperger syndrome by philip wylie

“I feel extremely grateful to have found your book. After reading about 25 books I came across yours and everything came together. I had been very confused with the terms in the DSM as well as my own preconceived notions from movies. Your book was certainly the most important book I have ever read in helping to understand myself. I bought extra copies of your book and gave one to my Thai psychiatrist, and am sending one via Amazon to my 72 year-old  brother who lives alone in the Texas Hill Country. As you know, after reading your book I contacted Sara Heath and she has been great. I have attached my assessment letter from her following our four hour Skype conference and numerous emails.” Mark D, 10 October 2014

http://www.evenbreak.co.uk/blog/

http://www.facebook.com/JKPAutism/

http://www.amazon.co.uk/Diagnosis-Asperger-Syndrome-Spectrum-Disorder/dp/1849054339/ref=sr_1_1?s=books&ie=UTF8&qid=1413012740&sr=1-1&keywords=very+late+diagnosis+of+aspergers+syndrome

 

 

Are Aspies Socially Inept?

The belief that Aspies are socially inept is not completely true …  perhaps  half true and half false in my opinion because:

- NT’s generally think that brown-nosing = social skills and Aspies tend to find it difficult to ‘act friendliness’ with certain types of people just because they have power etc

- Reluctance to play the social game is often perceived as inability to play that game

- Anxiety and anger cause our communication to be angular rather than smooth (and you will appreciate this as an artist) yet these emotions are caused by non-acceptance by NTs

- NTs and Aspies are different cultures with their own communication styles, yet NT’s judge us as ‘socially inept’ for not mimicking the NT social skills, yet we are perfect at communicating in our own cultural style. It’s like Aspies judging NTs as being socially inept for not communicating and empathising with our way!

- Aspie social / communication style is direct, open, truthful and without the tiring mind games … I think this style is okay!

Can you see anything in the above perspective? I can see why people think as they do, but it’s not completely true!

BETTER LATE THAN NEVER

BETTER LATE THAN NEVER: The Long Road to Self-Realisation
By Philip Wylie

My diagnostic journey has been a tortuous one, but I am delighted to know myself so much better! A colleague recently suggested that my diagnosis was a gift from God and I agree.
boehner crying
Since my ‘self-identification’ (a term introduced to me by Dr Luke Beardon which is more apt than ‘diagnosis’), I have learnt more about myself in two years than the previous 51 years of my life. Moreover, research into my ancestry and family genetics has revealed several extremely sinister family secrets.

Although I worked as a Finance Director and Company Secretary of a private bank, I resigned due to Mafia money laundering issues. As you probably know, many Aspies have a bee in their bonnet about ethics! Afterwards, I found it difficult to survive in UK so, in 2003 (at the age of 43), I became a ‘refugee’ in Southeast Asia.

While living outside of UK, I have seen myself much more clearly. Facilitator Dr Altazar Rossiter, who I recommend highly, rationalizes my experience as follows:

“I think that living outside the UK (disconnected from the debilitating cultural matrix you learned to define yourself within) will have helped you in coming to understand yourself better. I know you’ve always questioned the insanity you experienced here. That particular brand of insanity is called ‘Englishness’. It is an energy matrix that defined your existence as you learned to make an identity for yourself. It’s not necessarily better or worse than any other, but living outside it enables a clearer perception of it.”

I believe in synchronicity. Everything in my life fell apart at the precise moment I read an article in my professional Accountancy magazine about Aspergers, written by fellow Chartered Accountant Mark Lever, CEO of the National Autistic Society. I had just fallen out with an employer in Cambodia, a place where it is extremely dangerous to have disagreements. And I had lost my money and my business.

I experienced a ‘thorough’ mental breakdown. However, on the positive side, I immersed myself in research about everything Aspergers! Several people judged me as being obsessed about Aspergers and my parents never believed me.

As a writer and journalist, I decided to write a guidebook about my extreme experience of very late diagnosis of Aspergers. In January 2012, I managed to get a publishing contract for the book with Jessica Kingsley Publishers. Nineteen months later, in August 2014, the book was published; that’s quite a long time, but be aware that I had some massive mood swings during my identity alignment experience! I am indebted to my editors for their patience and understanding towards Mr Angry!

I discovered many useful online tests for Aspergers, which I listed and explained in my book. My online research lead me to my dear mentor Sara Heath of Shropshire Autonomy who provided me with a pre-diagnostic assessment for Aspergers after a 90-minute video interview. A year later, I obtained a formal diagnosis for Aspergers.

I was extremely fortunate that my aforementioned colleague Mark Lever offered me a research job, which enabled me to return to Thailand. I did not feel safe after my employment blunders in Cambodia, so I had to escape!

One major mistake I made after self-identification was confiding in Mr Wrong Person who I thought was a reliable friend. Mr Wrong Person broadcast my diagnosis to everyone in Thailand, so when I returned to Chiang Mai nobody would return my calls. My social life was non-existent.

Before I sign off I want to let you know about two other projects that you may find interesting: a UK autism survey with Sara Heath of Shropshire Autonomy: http://www.shropshireautonomy.am55.co.uk/__sites/45/survey-report/late-diagnosis-survey-v7.pdf. Also, I am writing a book about a new developmental model for autism called The Nine Degrees of Autism based on my experience: www.ninedegrees.pw.

For more info about my book about late diagnosis, check out: http://www.jkp.com/catalogue/book/9781849054331

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.