Article from Mail on Sunday

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www.dailymail.co.uk/health/article-3715997/So-impossible-husband-actually-autistic-Research-thousands-Brtish-men-gone-undiagnosed.html

 

Original article….

Alarmed by the lack of support available for the wives and partners of men with AS, Justine and Krish Nath set up monthly workshops earlier this year to help them understand and cope with the challenges of day-to-day life.

By Rachel Ellis

 

DOES your husband have difficulty adapting to new situations, take comments literally and struggle to maintain friendships?

Are noisy situations stressful for him and is he clumsy? Does he find reading your emotions impossible, hate conflict and tend to walk away when you’re having a bad day rather than give you a hug?

If this sounds like your husband or partner, it’s possible he’s one of thousands of men with a type of autism known as Asperger Syndrome (AS) – many of whom have never been diagnosed.

AS is not a disease or illness, it’s difficulties making sense of the world socially which makes communicating and interacting with others problematic.

According to the National Autistic Society (NAS), people with the condition have problems in three main areas: social communication (struggling to interpret facial expressions and gestures), social interaction (difficulty making and maintaining friendships) and social imagination (difficulty understanding people’s thoughts, feelings or actions).

However, unlike other forms of autism which are linked to learning disabilities, people with AS are often very intelligent.

The condition is more common in men than women and is thought to be caused by a combination of genes and differences in the way the brain is wired.

According to the charity, AS is a ‘hidden disability’ which means people with the condition can lead ‘normal’ lives – hold down a job, get married and have a family.

Recently the BBC’s Springwatch presenter Chris Packham revealed he has the condition.

However, the unique way they process information and make sense of the world often makes them ‘quirky’, and adapting to change can be very difficult.

Krish Nath, a cognitive behavioural therapist at the Priory Hospital, London, who specialises in AS, said: ‘People with Asperger’s may come across as being a little bit quirky, over sensitive, don’t like to be criticised and reluctant to engage socially.

‘Because of these issues, social anxiety and depression are common because they are often rejected socially.

‘Growing up, they learn to function and survive in the world by having very controlled lives and doing things in a repetitive way.

‘It is often when they go to university, start work or relationship that they become more exposed – they are unable deal with changes or pressures, or take on board another point of view because their approach is set in stone.

‘The world becomes a frightening place and therefore they become preoccupied about protecting themselves and become obsessional.’

Living with someone with AS can be challenging, especially if they haven’t been diagnosed.

According to Justine Sullivan, AGE whose partner Chris was diagnosed three years ago, the strain it puts on relationships leaves many women lonely and depressed, and some are unable to cope and leave their partners.

‘As a single person, people with Asperger’s often function well – setting their own routines and ways of doing things,’ she said.

‘It is when they have to relate to others – start a relationship and a family that cracks really start to appear.

‘There is a massive problem with GPs not diagnosing Asperger’s. People with the condition are very capable, hard-working and clever, and that can mask the real difficulties that they have.

‘Often men only get diagnosed after their children receive an autism diagnosis.

‘That means for years their partners try to cope with their behaviours or choose to ignore it.

‘Many partners feel alone, unsupported and depressed, some take antidepressants, others leave their partner.’

Alarmed by the lack of support available for the wives and partners of men with AS, Justine and Krish Nath set up monthly workshops earlier this year to help them understand and cope with the challenges of day-to-day life.

Support is also available at the website Different Together (www.different-together.co.uk)

Justine said: ‘None of the women who come to the workshops knew their partner had Asperger’s when they met them.

‘They entered the relationship, invested an awful lot in it and projected how their lives would be together – and then found out that the reality was very different.

‘Our workshops offer support for women and try to help them understand that their partners have had Asperger’s all their life – it may even be what attracted them in the first place.

‘Understanding the condition and changing the way you as a partner behave or react to a situation can really help.

‘One woman who came to the group said if she’d been given the information earlier, she wouldn’t have left her husband.’

The support group is set up to help women like Jennifer Green, AGE… from Hertfordshire, whose husband of 27 years XXXX was diagnosed with AS 15 months ago after a lifetime of living with the condition.

‘The impact of undiagnosed autism spectrum disorder on partner is devastating emotionally, physically and mentally,’ she said.

‘In my case, after 25 years of confusion, pain, arguments and increasing isolation, there was little left to celebrate by the time we staggered to our silver wedding anniversary.

‘Why did this man who loved me not speak to me for days at a time? Why were family days out so disastrous? Holidays, even worse.

‘The mild mannered man I married became increasingly angry, critical and withdrawn. He took no apparent joy in sharing the parenting of our child, often going from zero to 100 in seconds.

‘He also took no responsibilty for his own behaviour resulting in patterns of denial, blame, mock. Gradually, I realised he was buried under layers of anxiety and depression brought on by just living.

‘After two and a half decades, I could no longer cope with the rages and silent withdrawals.

‘I had learned to live with no encouragement or nurturing but the anger had finally become too much. We never had people to our house and were no longer invited out by others – there was virtually no fun left.’

Their lives were transformed 15 months ago when, after seeing an advert for The Curious Incident of the Dog in the Night-time (a show about a boy with Asperger’s), she suddenly had a ‘light bulb’ moment and realised her husband was autistic. He was diagnosed within a month.

‘ALL of the seemingly cruel behaviours could be explained – his anxiety and depression came from living in our neuro-typical world, his withdrawals were shutdowns when overwhelmed by the demands of living in this NT world too,’ says Jennifer.

‘Life has become more peaceful as we read and learn about autism spectrum disorder together.’

Trina Walsh’s husband Bill, 62, was diagnosed with AS two years ago, after three of their five daughters were found to have the condition.

Trina, 46, from Plymouth, said: ‘Living with Bill can be extremely difficult at times – you never know what is round the next corner and how he is going to react.

‘I have lost so many friends and repeatedly I think I can’t go on like this. But I just keep going and picking up the pieces. Things could be very different if I had more support.’

 

For more information about the workshops go to

Giraffeworkshops.co.uk

 

 

How changing your behaviour can help

 

Living with someone with Asperger Syndrome can be challenging.

But understanding the condition and how people with AS experience the world can help you to resolve difficulties, according to Krish Nath, a cognitive behavioural therapist at the Priory Hospital, Roehampton, London, who specialises in the condition.

Tell-tale signs of AS include difficulty interacting socially, poor spatial awareness, difficulty expressing emotions, inflexibility and taking comments literally.

However, everyone is affected differently and a diagnosis needs to be made by a doctor.

According to Krish, simple modifications to your behaviour can make a huge difference when living with someone with AS.

‘The first thing to remember is that your husband or partner has always had Asperger’s – it’s not something new – it just might have become more apparent

‘Also the person with Asperger’s hasn’t changed. It’s their environment that’s changed or their partner, maybe after having a baby, for example, and they don’t know how to cope with it.

‘Asking them to use their initiative and be reasonable and helpful causes problems because they don’t understand what being helpful means.’

Accepting who they are and that they think differently to you, understanding their limitations, lowering your expectations and picking your battles can really help, says Krish.

‘Try not to overreact as this creates anxiety, and shouting will make them shut down,’ he says.

‘Understand also that it may be you or your expectations that are changing.’

Practical tips such as not asking them lots of questions as soon as they get in from work, giving clear instructions, summarising expectations and not having rooms too noisy will help.

However, it’s also important to remember their good sides.

‘It must be soul destroying for partners but there are good sides too,’ said Krish. ‘People with Asperger’s are very loyal. Once they find someone they think they can have a sustainable relationship with, they hang on for dear life.

‘You also need to recognise that you might have chosen that person because of your own vulnerabilities.

‘The dilemma for many partners is that they know something is wrong – often for many years.

‘But they also have lots of good times together and the difficult side to their partner’s behaviour is only exposed periodically. This makes it complex for diagnosing and making decisions about whether to stay or go in a relationship.

‘Many people with Asperger’s are not being managed and their partners receive no support. But talking to people in a similar situation can really help.’

 

CASE STUDY

 

Justine Sullivan and partner Chris, from London.

 

‘WHEN I met Chris nearly 16 years ago, it was his interesting and quirky personality

that attracted me to him.

However, what were fun and even endearing characteristics when we were young and childless, became difficult and frustrating when our relationship progressed to buying a house and having our two sons Connor, now aged six, and Arlo, AGE

Cracks started to appear in our relationship, friends and my family commented about Chris’ inability to adapt to new situations and how he compartmentalised every area of his life.

He was unable to put himself in my shoes and see that I needed help and support at times with the children, he was inflexible and couldn’t do more than one thing at once (and what he did do had to be in a certain order), had a problem with noise and took everything literally (he bought sacks of DVDs after he was told by the accountant he could offset them against tax).

He was also terrible with money – getting fixated on buying certain items which we couldn’t afford but he got into his mind that he had to buy, and got very stressed at times which caused him to have meltdowns. For years, I thought he was bi-polar.

I talked to my GP about my concerns but wasn’t taken seriously, so after some online research suggested Chris see a psychotherapist.

His diagnosis with Asperger Syndrome in 2013 has not changed his behaviour – but it has helped me to understand why it happens and manage my expectations.

I know now that when Chris is feeling frustrated or upset or let down, he will want to be on his own and I give him that space.

I also know that when I’m upset, he will also leave me alone when what I really want is a hug – but at least now I understand why he is doing it.

And if the washing machine and the radio is on in the kitchen and the kids are talking, I know now to turn the radio off so he doesn’t walk out the room because the noise is too much.

To say he doesn’t feel or empathise is insulting – he feels things very deeply and is sweet and very generous man – but he often doesn’t know how to say the right thing at the right time. He can’t read emotions.

It’s not an easy relationship to have at times. Far from it. But I now understand that Chris thinks and processes information differently and I am trying to focus on his good points.

I really love Chris. I know I won’t get what I had hoped for initially from our relationship but the children adore him and we do have good times. He also has the ability to make me laugh so hard I actually cry.’

ends