Jen Birch squeezes her eyes shut to think. “I no longer feel like I’m crazy,” she says. “I’ve just got different brain wiring and that’s okay.” The fine-boned, reserved 58-year-old has high-functioning autism, – a fact that has divided her life in two: the anxiety-ridden time before her diagnosis and the relief and freedom since.
She says that today life is happy. “I feel like my challenges are mostly over now. It’s a pity I wasted time being unhappy before I knew. But I’m making up for it now,” she smiles.
Previously named Asperger’s syndrome, Birch’s disorder was reclassified as high-functioning autism, part of autism spectrum disorder, in May 2013 by the American Psychiatric Association in the latest version of the Diagnostic and Statistical Manual of Mental Disorders, commonly called the DSM 5 – a primary diagnostic tool used by clinicians.
What is autism?
The umbrella term “autism spectrum disorder” acknowledges the full range in severity of symptoms possible within the disorder. In the most severe cases of classical autism, the person may be totally dependent on others, may be non-verbal and is likely to have global learning delay.
At the high-functioning end, a person can display anything from “normal” intelligence to outstanding brilliance – think Bill Gates or Charles Darwin – with deficits in social behaviour, and generally restricted, repetitive behaviour.
Deficits in social behaviour affects socialising and communicating. The person may not understand the subtle, intuitive social language most people take for granted, like gestures, body language, facial expressions and taking turns to speak. They may struggle with understanding the role of small talk and the wider concept of social relationships.
Consequently, says Natasha Delgarno of Autism NZ, “It can be a very stressful and difficult disability. Often they are putting a huge amount of energy into trying to behave appropriately.”
The second symptom group is restricted and repetitive behaviour. A person with the disorder may be intensely interested in a narrow topic, like timetables, or the names of stars. They may prefer strict routines and change may make them extremely anxious.
Says Delgarno, “This can create difficulty in ‘going with the flow’ and handling spontaneity, which can interfere with relationships.”
Atypical speech patterns are also often present. The person may have a sing-song quality to their voice or they may sound robotically monotone. They may have unusual sensory interests: they may not like to be touched or may be preoccupied with smelling objects.
Developmental delay in these main areas binds people with high-functioning autism, but the manifestation of symptoms in each person is as different as any one person, anywhere, is from another.
Says Jo Lloyd of Autism NZ, “If you’ve met one person with autism – you’ve met one person with autism.”
According to Dr Karen Waldie, a developmental neuropsychologist at the University of Auckland, the physical cause of autism is still unknown.
“It is now widely accepted that the brain in autistic individuals is both structurally and functionally atypical,” says Waldie.
A 2001 study has led some researchers to believe there is an overgrowth of brain cells and a later lack of pruning of white matter in the autistic brain.
“In effect, the autistic individual’s brain is like a tangled forest without the clear paths of connective circuits,” says Waldie.
It’s a subject she is deeply involved in as one of the principal investigators with Minds for Minds, a research campaign initiated by the University of Auckland.
With the tagline “Unlocking Autism Together”, Minds for Minds supports research projects that further understanding of autism and related disorders. They are currently conducting research into why such a high proportion of people with high-functioning autism have co-morbid conditions like anxiety and attention deficit hyperactivity disorder (ADHD).
Minds for Minds’s research complements the work Kev Appleton, child and adolescent psychiatrist and founder of the Starfish clinic in Auckland, is dedicated to. Diagnosis can be the initial step along the road towards a much better quality of life, yet Appleton says the disorder is under-diagnosed in adults.
“Autism spectrum disorder still doesn’t appear to be part of the adult psychiatry training programme, so it seems that only child and adolescent psychiatrists like me have expertise in this area. At the moment it’s as if it stops existing over the age of 18, which of course is just not the case.”
Autism Spectrum Australia (Aspect) estimates that almost 230,000 Australians have autism spectrum disorder. It is likely many of those people remain undiagnosed.
Once a diagnosis has been received, “the most important thing is understanding from family and friends,” says Appleton. Also, support from organisations like Aspect (autismspectrum.org.au) and free online services like austimhelp.com.au can help.
Appleton points out that while autism spectrum disorder itself can’t be resolved, an important part of treatment can be addressing problems that go along with it – anxiety, ADHD and depression.
“Co-morbidities can be improved by psychological therapies such as cognitive behavioural therapy, applied behavioural analysis, mindfulness and also medication. Medication can be a lifesaver.”
Like Birch, Marie Keymer, 41, an English as a foreign language teacher in New Zealand, didn’t find out she had high-functioning autism until she was an adult – she was 29 when her mother gave her information on the disorder.
Keymer (whose name has been changed to protect her privacy) thinks about her disorder in terms of strategies she gathers to compensate for it. Her strategies are lined up like eager understudies, waiting in the wings in case something goes wrong with the lead.
“I write everything down,” she says. Beside her is a battered red notebook, so worn it looks like it has been through the wash. It is three months old.
“Once, in Spain, I couldn’t find the street signs, because they were so tastefully unobtrusive, so I wrote down landmarks to help find my way.”
She has these solutions for multi-tasking, which she says is almost impossible for her;
for communicating; for going places she has never been; for not losing things; for learning new things.
Keymer is philosophical. “The requirements for success in life remain the same no matter who you are. Your job is to overcome the obstacles to get there.”
In addition to their plethora of self-tailored coping strategies, Birch and Keymer have carefully constructed lives in which conditions are right for them to function.
Neither have children. Both have understanding partners – Birch’s is platonic now, but still a mainstay. Both have chosen jobs that play to their strengths.
Birch has made her employers aware that she has high-functioning autism, so they don’t spring surprises on her and can allow for her needs. Aids like notebooks and rote learning replace brain functions like multi-tasking and intuitively learned social skills.
For both, a diagnosis has opened the way to gaining mastery over their different brain wiring. Says Keymer, “If we refuse to face it, it destroys us, but facing it we have a really worthwhile life.”
Tips for coping:
Jen Birch shares her tips for getting the most out of life with high-functioning autism:
Whether it’s rehearsing a trip to a café before the actual event, a conversation with a difficult person, or assembling all the tools needed for a job before beginning, this tip tops the list of meltdown prevention strategies, helping sidestep intense frustration and anxiety.
Writing things down is a quick antidote to the short-term memory issues that often come with the disorder.
A rehearsed phrase like “I need help” or “I don’t understand” can defuse a potentially anxiety-provoking situation before things feel overwhelming.
ONE THING AT ONCE Focusing on one task at a time, and thinking about one thing at a time, helps avoid the brain scrambling confusion that comes with multi-tasking.
A packed schedule is a fast track to high stress, but when high pressure activities are balanced with relaxing ones and downtime, it is much easier to maintain equilibrium.
Charts, checklists, and visual timetables can relieve anxiety by giving cues and reminders of daily planned activities.