Monday 23 October 2017

Talking to children about love in a cold climate

Talking to your children about sex and sexuality is something that parents sometimes find tricky, but add autism into the mix and there is a temptation to put your head in the sand. Norma Costello speaks to some mothers about how they came to understand that adolescents who struggle to make attachments still feel loneliness and have the desire to be loved

Maria Dollard and her daughter Lucy
Maria Dollard and her daughter Lucy
Lisa Domican and daughter Grace

Norma Costello

'I suppose, for a long time, I was denying Lucy has any sexuality. I just wanted to wrap her in cotton wool and try to avoid it, because you always think your child is so vulnerable. You start to see it as a threat, which I know is so wrong," says Maria Dollard, mum to Lucy, 20, who has an autism spectrum disorder (ASD).

Having 'The Talk' is easily one of the most intimidating parts of parenting. For some parents, it comes to a sharp halt with, "They teach us that in school," or, "I know all that already." It's a squeamish affair for all involved, and interruptions are sometimes a way for parents to leave the conversation, breathe a sigh of relief and hope their children get it right.

But for parents of children with autism, speaking about sexuality with their children can lead to myriad conflicting emotions and difficult decisions.

Maria Dollard knows first hand how daunting this can be. Maria, who has three children other than Lucy, says she felt immense pressure choosing the right educational path for her daughter.

"When you have a child with autism you can't get it wrong, you have to get it right," Maria says. "It's just not possible to 'unteach' something. For me, it was a huge worry, especially when Lucy reached puberty. I used to think, 'How will she manage when I'm not there?' Thankfully, we had great help, and Lucy got all the support she needed to be independent, which is so important."

Forging this independence has become a point for HSE psychologist Davida Hartman, author of Sexuality and Relationship Education for Children and Adolescents on the Autism Spectrum.

"A lot of parents think of sex education being all about sex, and may think that it is unrealistic that their child will ever have sex, and so it has nothing to do with them or their family," Davida explains. "But it is hugely relevant. And sex education is not all about sex. In fact, sex is just a very small part of it."

For parents of children on the autism spectrum – who are often overworked and overwhelmed – sexuality and relationship education can seem low on the list of priorities. But this can cause problems for children who might need more time to prepare for the changes happening to their body during puberty.

"In my experience, parents are supporting their child with so many other things that puberty usually creeps up on them unexpectedly," Davida says. "Which is understandable, as they may have only just taught their child to tie their shoelaces, or make a sandwich, and, suddenly, they are dealing with completely unexpected sexual behaviours.

"Unfortunately, when children are not prepared for these changes and are not taught to understand their feelings, behaviours often crop up and parents find themselves firefighting," Davida adds.

While most agree that an 'earlier the better' approach is the right choice, it is also important to take each child individually and make sure parents are fully involved.

Lisa Domican, mum to Liam and Grace, who both have autism, felt reassured when her feelings were taken into consideration.

"I was tremendously lucky to have both children in Saplings ABA [Applied Behavioural Analysis] school by the time puberty arrived," Lisa says. "The ethos is one of dignity and independence, so the programme was personalised to each individual, in order for them to take care of themselves with limited prompting. I was involved in creating each programme for them, and my wishes were taken into account. The school was extremely sympathetic and supportive, and, whenever I got overwhelmed, they guided me on."

Laura Crowley, director of Education Support Services for Shine Ireland, an autism charity, thinks that, despite the private nature of sexuality, parents should feel comfortable accessing resources available without intruding on their family privacy. If they choose to do it alone, parents could end up with behaviours that might be avoided.

"Sadly, I'm not approached as often as I would like on this issue," Laura says. "It's a pity because a lot of inappropriate behaviour could be avoided if help was sought. Parents feel embarrassed and go to the internet instead of talking to someone. This can be detrimental because, by trying to stop behaviours in the wrong way, parents can actually do more damage."

Psychologist Davida Hartman agrees with Laura on this, and feels that a lot of mistakes have been made in the past by well-intentioned parents trying to protect their children.

"I heard of one young woman, who got pregnant because she had been told by her parents that she that she couldn't get pregnant before marriage," Davida says, "and another girl who thought that you could get pregnant just by sleeping beside someone."

Unfortunately, such messages can be confusing for children with autism, and sometimes messages used in regular sex education could rob those with autism of their right to a sexuality and place them in vulnerable positions. Davida feels this is reflected in some well-meaning, but poorly executed learning tools.

"I read one story where a girl was told that only her parents and teacher could tell her who could touch her," Davida explains. "Not only are this girl's individual rights being seriously curtailed, but also she is being left extremely vulnerable to abuse."

Despite the uncomfortable process ahead, Davida feels that, without solid guidance and clear education, a confusion can develop that could lead to inappropriate behaviours.

"If their child is showing sexual behaviours in public places," she says, "the parents absolutely have to tackle it right away. Ignoring it just teaches the child that it is OK to do and, inevitably, the behaviour only becomes worse.

"I have seen this many many times, when a behaviour has been going on for years, with everyone ignoring it, hoping it will go away, until it is deeply ingrained and causing the child to be excluded from most activities out in the community, out of embarrassment and fear of what they will do and what other people will think."

Maria Dollard agrees, and feels parents need to recognise and address inappropriate behaviour even though it can sometimes be a painful and embarrassing experience.

"You have to look at it straight off. I usually try and find the right story from an educational book we use, Social Stories, and I show that to Lucy straight away. Then she is aware there is a problem with the way she behaved. It's not easy and, sometimes, it's an embarrassing situation, but I find it works and that's what's important."

As parents try to educate and prevent inappropriate behaviour, they are faced with a growing danger in peer situations.

As technology welds itself to teenage life, says Davida Hartman, the lines between reality and fantasy become blurred.

"In the same way that children with autism may have difficulties separating fact from fiction in, say, Superman, adolescents with autism will have difficulties when it comes to pornography or other sexual imagery," Davida says.

"Boys may learn messages about how to treat women that will leave them vulnerable to being accused of possibly illegal behaviour. And girls? I would be frightened to think about how vulnerable they would be if the only lessons that they learn about sexuality and sexual relationships are through pornography."

Laura Crowley agrees with Davida, and is working to help those affected by images they do not understand.

"We've had some children come in who've been very upset by what they have seen," she says. "This is why we reiterate internet safety, and focus on the difference between reality and fantasy – something they struggle with."

Lisa Domican, whose son Liam is now 16, maintains tight controls over what he is exposed to and regularly checks that he understands what he is watching.

"We maintain a level of supervision around our kids that a typically developing teenager would probably find intrusive," Lisa explains. "So, we have a lot more control over what they are accessing online.

"When a search on YouTube brings up an inappropriate edit of a video – we can see it and shut it down. Liam is allowed to watch 15-rated movies, which might have some swearing, implied sexual activity or mild nudity.

"When a scene appears, I will ask Liam what he thinks is happening just to gauge what his understanding is."

Despite some help being available, Ireland is, sadly, behind its European counterparts in sex education across the board. This can put parents in a difficult position when they feel they have limited support available, and leave children confused and upset. Davida Hartman feels it also shifts the focus onto the negative aspects of human sexuality.

"When I suggested to one principal that a boy in his school needed work in this area, he told me not to worry about it, that he would do what he did with all the boys once every year: show them pictures of penises infected with STIs and 'that would scare him off sex for life.'

"Leaving aside the issues of an individual's rights to a healthy sexuality, this completely misses the aims of sex education to start with," Davida says.

"It also does not take into account the difficulties that children with ASD have in connecting bits of information together and seeing the big picture.

"That boy would probably have left that class with some vague notion that STIs are horrible, without joining the dots as to how he could possibly avoid one."

Stories like this show just how far we have to go in providing our children with access to decent sex education.

As teenagers and adolescents struggle with the pressures of the technology age, now is the time for open and honest dialogue on sex – a dialogue that should start at home and continue in school. For children with autism who might have problems with interpersonal skills and communication, this is the very issue that could reach crisis point without support and appropriate education – something that Davida Hartman has seen too often.

"One of the main problems is that parents are doing the absolute best that they can in a system that does not value or promote sex education. A system that usually only introduces the issue to them when their child has touched someone inappropriately and something needs to be done about it."

Maria Dollard feels we need to rethink how we support children with ASD. Telling a child to do what the other children do can make them vulnerable to abuse, and demanding affection can take away a child's independence, and right to their own feelings and opinions.

"A child's independence is so important," Maria says. "For a long time, children were taught to copy and imitate behaviour. We were saying, 'This is how we want you to behave', with no consideration for the child's individual feelings. We could be setting them up to think they can't say no.

"I want us to start focusing more on autonomy. The idea that a child can say, 'No, I don't want to give Granny a kiss,' when Granny walks into the room. It's giving a child their independence like anyone else."

Lisa Domican feels the cornerstones of any educational programme should include independence and dignity, and this is something that, unquestionably, should be provided for children to have happier, healthier adult lives.

"I believe in my children's right to dignity and independence, and this is something we should all be working towards."

 

Cut off from experiences

Mum-of-four Maria Dollard, left, feels that, despite providing her daughter with a solid sexuality and relationship education, 20-year-old Lucy, far left, is now cut off from relationship-building experiences that the rest of us take for granted.

"As a parent of a child with a disability, you often place other things much higher on the priority list than relationships and sexuality, but that's exactly the area people with autism face difficulties in.

"Before Lucy turned 18, she was able to go to the local youth club. When she was there, she developed a small crush on one of the boys, but it was very childlike. So you could say I feel conflicted, even though I want her to do more things, I'm still so worried.

"Like a lot of children with autism, once Lucy left school a whole support structure disappeared. The experience was like falling off a cliff.

"Children with autism spectrum disorders have various constitutional entitlements, to arrange speech therapy and things like that, but it all stops when they leave school and become adults.

"One day, Lucy was listening to music – a singer called Ryan Adams. I looked over and saw tears rolling down her face. When I asked her what was wrong, she said: 'Lucy's sad.' When I asked why, she said, 'Lucy's lonely.'

"It really hit me then how wrong I was to assume Lucy doesn't have the same feelings in this area as everybody else. It's also particularly sad because the nature of her disability means she finds it hard to engage with people.

"I'd love Lucy to have a social life outside of her parents; she's entitled to it. It's like any of my other three children, you don't know if they're going to reach the right person, but at least they'll have opportunities to meet people and engage in different activities.

"Years ago, I helped organise a summer camp with a mixed group of kids – some with autism. I was waiting for them to come out of the changing rooms one day and Lucy didn't come out with the others. Finally, I went in to find out what was up. Lucy was sitting there smiling while another girl painted her nails.

"It was such a rare opportunity with her to do those simple, girlie things she loves, and to explore that side of her personality."

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