Husband a right old grump? He could be one of thousands who have Asperger's without realising

Asperger’s is a ‘high-functioning’ form of autism where sufferers often have very high IQs

By ANNA MAGEE



When martial arts teacher Sandra Beale-Ellis discovered one of the children in her class had Asperger’s syndrome, she set out to discover more about the condition.

‘I’d seen the film Rain Man, but that was the extent of my knowledge about autism,’ says Sandra, 44, who lives in Herne Bay, Kent. ‘So I bought a book about Asperger’s to read up about it.’

Autism is a developmental disability causing difficulties with communication and relating to other people.



Undiagnosed: Teacher Sandra Beale-Ellis was surprised to recognise some of the traits of Asperger's in her husband, Joe

Asperger’s is a ‘high-functioning’ form of the condition, where sufferers often have very high IQs.

Learning about its classic characteristics — social awkwardness, a love of detail and repetition, and a tendency for obsessions and collecting — Sandra was surprised to recognise some of the traits in her husband, Joe, 50.

Joe, who is the founder of Kent Karate Schools, a string of martial arts academies in Kent, owns hundreds of salt shakers he has been collecting since he was ten, which sit in neat rows in their house. He is also obsessed with castles and runs an online tearoom review site.

Sandra grew more interested, and signed up for a postgraduate certificate in Asperger’s. That was when the lightbulb moment came.

Recognisable traits: The film Rain Man, pictured, was the extent of Sandra's knowledge about autism - until she realised her husband had it

‘One of my tutors said people with autism and Asperger’s often have sensitivity to light, touch, colour or taste,’ says Sandra.

1 in 50: The number of men who have some form of autism



‘Joe hates clothes against his skin and would strip off to his T-shirt and underwear the minute he got home, even in winter. He hates the colour red and bright lights. I’d always called them Joe-isms. Now I realised they were signs of Asperger’s.’

Joe was sceptical, but after two years of persuasion, he saw a psychologist and after a three-hour interview he was diagnosed with mild Asperger’s.

But, incredibly, there was more to come. Though Asperger’s is significantly more common in men than women, as Sandra sat in on Joe’s interview she felt pangs of recognition.

‘It was like a checklist of my own past,’ she says. ‘Like Joe, I love detail, order and lists.

‘I was in the top group for most subjects at school, but I didn’t understand fashion or dolls or boyfriends, so was often left in the corner with my book. I didn’t have any friends.’

In the two years after Joe’s diagnosis, several people on the postgraduate course asked Sandra if she thought she, too, might have Asperger’s.

Sure enough, in October 2010, she had a day-long interview with psychologists and was also found to have the condition.

‘I left the interview and burst into tears,’ she says.

‘I went from feeling upset to angry to confused and sat there crying my eyes out.’

Big issue: There is a lack of understanding among GPs in spotting autism, meaning a third of adults with undiagnosed autism go on to develop severe mental health problems (file picture)

According to the National Austistic Society (NAS), one in 100 adults has a form of autism.

There are 225,000 adults living with Asperger’s, most of whom don’t know they have it because they can get by in mainstream life and hold down jobs.

While autism was first described by psychologist Leo Kanner 50 years ago, Asperger’s wasn’t recognised in Britain until 1994.

As a result, psychologists suspect the vast majority of undiagnosed adult autism cases will be those with Asperger’s who grew up before the disorder was identified.

‘By now, we are getting the diagnosis of severe autism right,’ says Dr Linda Buchan, consultant psychiatrist at the Sheffield Asperger’s Syndrome Service.

‘But adults with Asperger’s are slipping through the net because their symptoms are subtle and they may get by on their intelligence. That doesn’t mean they’re not secretly going through hell.’

The consequences of having Asperger’s and not knowing it can be severe.

‘People can develop depression and panic attacks or what psychologists call meltdowns. That’s where those with Asperger’s use so much energy to act normally that they end up exhausted and unable to get out of bed for days. Even a small change in plans can shake them.’

A recent report by the National Audit Office found eight out of ten doctors admitted they didn’t have enough knowledge or training in autism.

‘There is a lack of understanding among GPs in spotting autism,’ says Sarah Lambert, head of policy at the NAS.

‘As a result, a third of adults with undiagnosed autism go on to develop severe mental health problems.’

Indeed, when Sandra persuaded Joe to see his GP he was met with dismissal.

‘He said to Joe: “Why do you want to know? You’re successful, married, what’s the point?” He didn’t believe adults with autism even existed,’ she says.

But Joe’s diagnosis was a great relief, not least because it explained his sudden, unexplained rages that had plagued their relationship since the couple met and fell in love 21 years ago.

Of the 500,000 adults with Autism Spectrum Disorder, of which Asperger’s is a part, 80 per cent are men.

As is common with many of them, Joe’s condition manifested itself as an anger problem. ‘Joe would lose his temper for the strangest reasons,’ says Sandra.

‘He never hurt me, but his language was hurtful and we had plenty of broken furniture and holes in the walls.

‘In the first few months there were moments when I thought about walking out.

‘Joe’s family have a history of mental illness and I wondered at first if perhaps he suffered from bipolar disorder. But we were so connected from the very beginning that I couldn’t seriously think about being without him.

‘Eventually, we worked out his triggers — tiredness, hunger and stress,’ says Sandra.

‘We arranged our lives so the triggers didn’t happen. The house was always impeccably organised and I stopped wearing red.’

Because Asperger’s in adults is largely undiagnosed, many people may be married to someone with the condition and be unaware of it, suffering rows that could have been avoided with a diagnosis, says Dr Buchan.

‘People with Asperger’s struggle with emotional displays, so their partners often interpret their behaviour as uncaring and undemonstrative. They may find it important to stick to plans and timetables, often becoming upset when their partners want to do something spontaneous.’

In women, Asperger’s symptoms can manifest as extreme passivity or anxiety, says Dr Judith Gould, consultant psychologist and director of the Lorna Wing Centre for Autism in Kent.

Sandra had always been the calm one in the marriage.

‘I didn’t have Joe’s temper, but suffered from nervous anxiety instead,’ she says.

‘Women are much better at masking their symptoms, so Asperger’s can be misinterpreted as Obsessive Compulsive Disorder, shyness, anxiety or even an eating disorder because sufferers may develop obsessions with calorie counting or exercise.’

While it may seem a coincidence that Sandra and Joe both have the condition, Keith Lovett of charity Autism UK Independent says: ‘People with Asperger’s have been known to enter relationships with each another.

‘This may be because the lack of social interaction and cues between them make for a mutual understanding, but there is no scientific evidence proving a link.’

There is no medication or treatment for autism or Asperger’s, but those diagnosed benefit from care, support and therapy such as Cognitive Behavioural Therapy (CBT) to help everyday functioning and training in social skills.

For Sandra, Joe’s diagnosis had a positive impact on her life.

‘I no longer feel to blame for Joe’s rages and feel in control of what is going on,’ she says.

Joe agrees. ‘I realised it wasn’t that I had a rotten temper, but the Asperger’s was affecting my behaviour,’ he says.

‘I have learned to control it and when I feel a meltdown or rage coming, I have time alone or listen to music to calm down.’

Sandra specialises in teaching martial arts to children with autism. ‘Being diagnosed has helped my teaching,’ she says.

‘I can identify with what the children are going through and parents are more willing to open up to me and accept my advice.’

She has learned to love the fact she and her husband are just a little different.