Personal experiences in my first years after diagnosis

By John Counsel

This article was written during 2003-2004 — the two years after I was diagnosed with Asperger’s Syndrome on Christmas Eve 2002. (The best Christmas present I’ve ever received, by the way.)

I wrote it to record my thoughts at the time for my own future reference… and as a possible help for other recently-diagnosed Aspies.

Updates (highlighted in red, like this) have been added from time to time.

I was diagnosed on 24 December, 2002 with Asperger’s Syndrome, a neurological condition on the mild/genius end of the autism spectrum. It explains and makes sense of a lot of things that have puzzled and troubled me since childhood. Now, at last, I’m beginning to see things as they really are.

I feel a bit like Neo, the hero of The Matrix”, played by Keanu Reeves. He discovers — after choosing to take the red pill, which would help him discover the truth, instead of the blue pill, which would allow him to continue in blissful ignorance — that reality is actually a computer-generated illusion. (No, the allegorical reference here to Adam and Eve’s choice of fruits in the Garden of Eden hasn’t escaped me.)

I’m really relieved to have been made aware of reality. On the other hand, I suspect Lynne some-times wishes she could take the blue pill — she feels a bit hemmed in by it all. But, hopefully, she now understands that my frequent, frustrated cry “I’m not a mind reader!” is a reflection on me — or, more accurately, on my condition — than on her, and that my insensitivity and lack of communication were not deliberate or malicious. Still, now we know what we’re dealing with, we can begin to make the changes needed.

Here’s a quick snapshot of what some Aspies are like (there’s no such thing as a typical Aspie. It’s a syndrome). If you know me, you’ll recognise most of these. (Note: all Aspies are different, so this is a very general guide only, and lacking in specific detail.)

  • Highly intelligent. IQ often in top 1%-3% of population. I’m officially in the top 3%. My sister-in-law, Dr Pam Reynolds (Ph.D in statistics), says it’s really 1.5%, but who’s quibbling? A high IQ has nothing to do with common sense and sound choices, which I value much more.
  • Highly creative or highly technical. (I’m creative. Definitely not technical!)
  • Intensely focused on areas of interest. (I’m legendary/notorious for this, depending on your viewpoint. Horror stories abound.)
  • Often obsessive in areas of interest — usually a limited number of areas. (I’m unusually broad in my interests for an Aspie, but tenacious like a ferret once I’m interested!)
  • Tend to be obsessively organised or pathologically disorganised. (Me again. Ironically, I’m able to teach others how to become brilliantly organised and productive, but utterly unable to do it for myself. Another major source of frustration.)
  • Socially inept — miss social and emotional cues, unaware of body language. (That’s me, BIG time. This has had a devastating impact on my family relationships without me ever really understanding it until my diagnosis.)

Love this video showing the classic Aspie/NT dating dilemma… she (NT) wants small talk, but he (Aspie) can’t see her eyes glazing over, etc

  • Function exceptionally well on the objective level, but poorly on the subjective level. (Yep. Me again. I can give excellent advice that helps people in all kinds of ways, yet can’t seem to apply any of it to myself. The frustration this ‘hardwiring deficiency’ causes me is indescribable.)
  • Exceptional written communication skills with encyclopædic general knowledge, but we tend to be unable to discriminate regarding relevance, appropriateness or value of content. If asked a question, we tend to tell everything we know about the subject on the assumption — often false — that the person asking is genuinely interested. I’ve learned skills here over the years as a professional writer, so I tend to be okay on this one unless it’s outside my areas of interest. But I need to do it consciously. I’m forever over-writing and having to edit ruthlessly. I’m notorious for running overtime in seminars and workshops because “they NEED to know this”. I’ve managed to overcome this (mostly) since the diagnosis, thankfully.
  • Often suffer from associated neurological conditions, such as neurofibromatosis — common in all areas of the autism spectrum. (Me again. Neurofibromatosis Type 1.)
  • Often physically clumsy or uncoordinated fine motor skills. (Some of my fine motor skills are surprisingly poor, while others are exceptionally good — in my areas of interest. I was shocked by my clumsiness during the performance assessments in the IQ tests used as an initial screening tool for Asperger’s Syndrome.)

Note: You’ll find more detailed features in Gillberg’s Diagnostic Criteria (opens in a new browser tab or window)

Here’s a quotation from the web site of Families of Adults Afflicted with Asperger’s Syndrome Inc that helps put it into perspective from the viewpoint of family members:

Asperger’s Syndrome is a newly recognized (1994) neurological condition. It shares many of the same characteristics as autism, although people with Asperger’s Syndrome do not always have the accompanying disabilities. Those afflicted with this syndrome often have difficulty understanding what those around them think and feel. As a result of this, they often behave inappropriately in social situations, or do things that may appear to be unkind or callous. Many Asperger sufferers have a difficult time in planning and coping with change, despite above-average intelligence. This manifests itself as a notable lack of ‘common sense’. There are many nuances to how this condition affects the lives of those afflicted as well as the lives of their families.

It is the spouses, siblings and children of those afflicted with Asperger’s Syndrome whom we are trying to reach. Especially those whose relative has not been correctly diagnosed with Asperger’s Syndrome until well into their adulthood.

One woman wrote:

“Is anyone listening?… We, the families, with our blistered hearts and souls and damaged psyches, are the end-product of undiagnosed and untreated Asperger’s Syndrome. How many families are suffering out there? The feelings of rejection and loneliness play a major role in the lives of the Aspergers family. You and your feelings are not recognized by the afflicted person.”

Asperger’s Syndrome is often associated with another neurological condition, Neurofibromatosis Type 1, with which I was diagnosed eighteen months before. Sadly, none of the specialists I consulted made the telltale connection at the time that may have changed the course of our lives. But they didn’t and we’re left to deal with the aftermath as best we can. That’s life. As the Japanese so wisely say, “Fix the problem, not the blame.”

Update 4 February 2004

I’ve finally discovered why nothing was said to me when I was diagnosed with Neurofibromatosis Type 1. I wrote to the neurologist who diagnosed me, Professor Chris Bladin, Associate Professor of Neurosciences at Box Hill teaching hospital, asking if there were any professional impediments to such a recommendation, and I received his reply today. 

I was stunned by his simple explanation.

I’d made the connection in early January 2003, shortly after my diagnosis for Asperger’s Syndrome. I wondered what the chances were of having two neurological conditions that weren’t related in some way, so I searched the Internet and found dozens of medical and research sites to support the link between Autism Spectrum Disorder and Neurofibromatosis Type 1.

My mistake was in assuming that this link was common knowledge amongst neurologists and clinical psychologists. It isn’t. That looks like changing now.

Letter from Professor Christopher Bladin, confirming the link.

In August 2002, shortly after Lynne and I announced our decision to separate, I was feeling down and decided to watch television while I ate lunch (I’d worked from home for years — another common Aspie attribute). I flicked the TV set on to find that it was on ABC-TV and the Telstra National Press Club Address was about halfway through. The guest speaker was a clinical psychologist from Brisbane, Professor Tony Attwood, an internationally recognised authority and author on Asperger’s Syndrome, which I’d heard of but knew very little about.

ss-npc-TonyAttwood-200208-h

I listened, intrigued, as he answered a request from a journalist to give a “snapshot” of a typical adult “Aspie” in precise detail. The only thing missing was my name! I was shocked at first, then excited as I realised its possible significance.

Within minutes I’d gone on-line and tracked down more information, some contacts, and made an appointment with a specialist for late September. This eventually led to a formal diagnosis on Christmas Eve, 2002.

Asperger’s Syndrome is characterised by high IQ, high creativity or technical ability, intense focus (often misdiagnosed, as in my case, as Obsessive-Compulsive Disorder, which it’s not), we’re often highly successful in our areas of interest — and socially incompetent to some degree.

It’s not a mental illness.

It’s a syndrome, which is about effect — behaviour — not cause. It’s to do with our “hardwiring” — possibly caused by whatever causes Neurofibromatosis Type 1. The neural pathways develop differently to those of normal people. We’re different, that’s all. The nearest I can come to describing my diagnosis is that, one day, I woke up to discover that I’d been living with aliens all along. The Invasion of the Body Snatchers took place long before I was born. (Like other autism spectrum conditions, Asperger’s Syndrome is genetically transmitted.)

But as Tony Attwood said at the conclusion of his address, the world needs Aspies. We tend to be the movers and shakers — and even consciences — of history because of what and who we are. If human progress were left to the rest of mankind, according to Professor Attwood, “we’d all be having a wonderfully social time around the fire — in the caves!”

aspies-attwood

Asperger’s Syndrome wasn’t officially recognised until 1994, despite Dr Hans Asperger’s original articulation of the condition in 1944, and is still often misdiagnosed. It’s difficult to diagnose, especially in adults, because our high intelligence leads us to adapt ourselves and mask our condition, especially if we’re creative. It’s now estimated that as many as 1 in every 300 people has this condition. The vast majority are males (although the majority in my family are female)..

Undiagnosed Asperger’s Syndrome is now being recognised as a major cause of marriage break-down because of our lack of ability to read emotional and social cues, such as body language and oblique verbal hints, and a tendency to not communicate due to our intense absorption in whatever holds our interest at the time. We may also have an aversion to being touched or having our personal space invaded, which isn’t conducive to intimacy in personal relationships, especially marriage.

We tend to find it difficult to differentiate between what’s meant literally or figuratively, and we often suffer neural overload in social settings — we may shut down (going to sleep, avoiding crowds, or simply “freezing up”) or we may explode emotionally because of the extreme stress. We can’t handle small talk or understand the subtle nuances of normal social interaction.

Paradoxically, we’re often outstanding communicators in textual environments, like writing, on the Internet — especially email and social media — and we can often pick up subtle nuances of meaning and behaviour there that we’d never recognise face-to-face.

If you’ve seen Jack Nicholson in “As Good As It Gets”, you’ll see a pretty accurate portrayal of some-one with Asperger’s Syndrome. The role has been erroneously promoted as a person affected by Obsessive-Compulsive Disorder (OCD), and it certainly shows a tendency to that condition, which isn’t unusual in some Aspies. But the overall portrayal is representative of much more than OCD. People affected by that condition don’t experience the same level of stress in social situations. The giveaway is the infamous scene with Helen Hunt in a waterside restaurant in Baltimore. Jack is totally stressed out by the pressure of coping with small talk — a classic Aspie trait, not OCD. And his inappropriate responses in social situations are also classic Aspie. Interestingly, he’s a successful writer of romance novels, despite his social and emotional ineptitude… again, classic Aspie behaviour. His compliment to Helen Hunt is also typical Aspie, both in the nature of the compliment itself and the conscious, tortuous process that produced it.

Very familiar stuff to me.

With the diagnosis has come enormous relief and a very clear direction in which to move. I’m fortunate to be only mildly affected, and I’m apparently exceptionally self-aware. I’ve managed to draw many accurate conclusions about my own behaviour and I’ve learned to deal with most situations where there’s a risk of misunderstanding. Of course, a major in educational psychology helps, even though it didn’t help me in time to save our marriage.

As I suspected, total frankness works best, and I’ve even managed to resurrect some old friendships that had fallen foul of my sometimes destructive behaviour in the past. (Aspies can’t deal with uncertainty — we’ll even destroy a relationship, just to remove the uncertainty that’s causing us stress, which is incomprehensible to most neurotypical people.)

For now, I enjoy dialogue and getting to know new people. I prefer the company of women to men, with some notable exceptions in both cases. I’m not into the male pursuits of football, cricket, cars, fishing, drinking, pubs, etc. Nor am I a party animal — that’s just not part of an Aspie’s make-up.

In early 2001, when I was creating a family web site, I wrote a reflection on myself and my often unusual behaviour. The diagnosing clinician told me, after he’d read it, that he could almost have diagnosed me conclusively from the observations on that page alone. For a glimpse into the perceptions of a mild, self-aware Aspie, you can view that page here.

December 2009 Update

A few days ago I made another breakthrough connection that had bothered me all of my adult life. I’ve always struggled to learn as a student. The phrase “if you want to really learn something, teach it” has been my catchphrase ever since I graduated as a teacher. In other words, if I wanted to learn something more effectively, I had to find a way to teach it to someone. Only then could I manage to understand the concept, principle, methodology or skills needing to be taught/learned.

During a discussion about Asperger’s Syndrome and its effects with my youngest daughter, Esther (20, and also an Aspie), I made a comment about how Aspie’s typically perform poorly on the subjective level, but outstandingly on the objective level — and promptly realized that this explained my own learning difficulty: as a student I function subjectively, struggling to apply the lesson to myself… something for which I lack the necessary neural pathways (or “hard wiring”). But as a teacher, I function on the objective level… able to view the thing being taught at arm’s length, in proper perspective. It doesn’t apply directly to me in that context, yet I learn it as a by-product — a consequence — of having to teach it to someone else.

I can’t begin to tell you how exciting this discovery has been to me. It led me, immediately, to a cascade of breakthroughs in developing new systems and programs in my training business, which I’d been struggling to resolve for several years. I plan to explore this new insight in much more depth in coming months. I get the insistent feeling that this could be a significant breakthrough for many other Aspies.

2015 Update

In recent years there has been much written and said about autism being caused by vaccines, originating from research published in 1998 by Doctor Andrew Wakefield, a British doctor whose research was revealed as fraudulent in January 2010 and thoroughly discredited — but not without giving rise to the Anti-Vaccine movement that has led to the deaths and suffering of unknown numbers of children and the rise of several diseases, including measles and whooping cough (pertussis).

More recent research into possible causes of autism have shown significant promise, including the discovery in 2014 that the normal “pruning” of excess synapses on the neurons of neurotypical children — which appears to help prevent neural overload — doesn’t occur in children with autism, as shown in these images:

This discovery also suggests a common cause for autism and Neurofibromatosis Type 1 — which causes tumours to grow around major nerves (extremely painful when inflamed) and external tumours to grow as extensions of nerve endings outside the body, as either skin tags, moles or similar fleshy growths.

This also supports a possible cause of neural/sensory overload in autistic children: too many sensors to be able to cope with the passage and processing of information to the brain.


© 2003-2017 John Counsel. All rights reserved.

Resources  

Aspie Brains compared with Neurotypical Brains

comparative-brain-activity

Gillberg’s Diagnostic Criteria for Asperger’s Syndrome

Note: It bothers me that Gillberg makes no reference to the subjective/objective dichotomy affecting so many Aspies. In fact, every Aspie with whom I’ve raised the matter has confirmed that they have the same or similar kinds of experiences as me in these areas. I plan to pursue this further.

1. Severe impairment in reciprocal social interaction

(at least two of the following)

  1. inability to interact with peers
  2. lack of desire to interact with peers
  3. lack of appreciation of social cues 
  4. socially and emotionally inappropriate behavior

2. All-absorbing narrow interest

(at least one of the following)

  1. exclusion of other activities
  2. repetitive adherence
  3. more rote than meaning

3. Imposition of routines and interests

(at least one of the following)

  1. on self, in aspects of life 
  2. on others

4. Speech and language problems

(at least three of the following)

  1. delayed development
  2. superficially perfect expressive language 
  3. formal, pedantic language 
  4. odd prosody, peculiar voice characteristics
  5. impairment of comprehension including misinterpretations of literal/implied meanings 

5. Non-verbal communication problems

(at least one of the following)

  1. limited use of gestures
  2. clumsy/gauche body language 
  3. limited facial expression 
  4. inappropriate expression 
  5. peculiar, stiff gaze

6. Motor clumsiness: poor performance on neurodevelopmental examination

(All six criteria must be met for confirmation of diagnosis.)


Links to Asperger’s Syndrome Resource and Support Sites

Asperger’s Disorder Home Page – R. Kaan Ozbayrak, MD

Asperger’s Syndrome Support Network

Families of Adults Afflicted with Asperger’s Syndrome

Professor Tony Attwood — author, therapist.


This list will shortly be expanded and updated  

Asperger’s Help Australia

https://www.facebook.com/groups/aspergershelpaustralia/

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