Christine McGuinness: Unmasking My Autism - advice for parents

"A year ago, at the age of 33, I discovered something about myself that has changed my life forever."

Model and TV-personality Christine McGuinness is the parent of three autistic children. Last year she also received an autism diagnosis, something she spoke to Parents' Toolkit about at the time.

Now, Christine features in a new BBC One documentary, Christine McGuinness: Unmasking My Autism, in which she tries to understand what it means to ‘mask’ and explores why she, and many other autistic women, have also been diagnosed with an eating disorder.

If your child is autistic, or you think they might be, a clearer comprehension of the condition can give you a better understanding of your child.

In the programme Christine meets sca Happé, Professor of Cognitive Neuroscience at King’s College London, and Dr Emma Colvert, a Chartered Psychologist specialising in female autism. Both have spoken to Parents' Toolkit to offer advice…

I want to understand why autism has traditionally been perceived as a male condition and why so many women have spent their lives undiagnosed.
— Christine McGuinness

Professor Happé says the way we’ve viewed autism in the past has led to it being missed in women.

"I think one of the problems is we still all carry this bias that when you see a boy who’s struggling socially, you think, could it be autism? But when you see a girl who’s struggling socially, you think she’s shy or it’s social anxiety or something and you don’t think of autism as the first thought."

If you believe your child might be autistic, there are things you can look for. Professor Happé explains some of the signs of autism are, “social and communication difficulties and rigid/repetitive behaviour and interests.”

She has examples of what that can mean and how it can differ in boys and girls…

• “Intense interests characteristic of autism may have a more ‘ordinary’ topic in some females (e.g. horses, Kate Winslet, a boy band) vs males (e.g. trains, electricity pylons, etc) – although the intensity and specificity is still unusual (e.g. she just collects facts about Kate Winslet, doesn’t watch her films; is only interested in one specific breed of horse, all others are boring)”

• “Social difficulties may be being ‘clingy’ to one friend rather than socially aloof.”

• “Maybe fewer or less obvious rigid/repetitive behaviour and interests – 'boy' may walk the playground perimeter, 'girl' may be stuck on a repetitive thought.”

• “On average girls may ‘mask’ or ‘camouflage’ their autism more than boys.”

If you notice these traits in your child, Professor Happé advises that you can speak to your GP and ask for a referral to autism diagnostic services.

As Christine has increasingly come to understand her autism, she's noticed how she can ‘mask’.

Dr Emma Colvert defines masking as, “things people do to hide or disguise aspects of their behaviour that might seem different to non-autistic individuals.” Having a greater understanding of what masking looks like could help you to pick up on autism in a child.

Being dressed with my hair and makeup done is easier than showing who I am on the inside and it’s two completely different people. And it’s contradictory and it’s living in conflict.

Masking can involve a range of behaviours. Dr Colvert explains that one form of masking can be pre-planning conversations, “Some people talk about the fact that they've learned an entire conversation that they're going to use and they'll use it with everybody that they then meet at the office that day, that same icebreaker conversation.”

She says that in females, “Some girls and women talk about finding another individual who they ire socially. And they will set about copying aspects of their behaviour. They’ll dress like them, get into the same interests as them.”

Dr Colvert has seen how masking can mean children behave differently at home to at school. “We get children coming home from school who have masked all day at school, kept it together, their teachers will say they’re a model pupil. And then they'll come home and meltdown and just be so overwhelmed that their parents see a completely different child.”

Letting your child be themselves could help them with the stress of masking. Dr Colvert says, “There’s this move within the autistic community and clinicians to try and encourage people to be their authentic self. But the world can be quite cruel, there can be negative reactions to autistic individuals from non-autistic individuals. What people without autism can do to help is to become more accepting of autistic behaviour.”

Dr Colvert says that because autism can be seen as male, girls can be diagnosed with other conditions.

“There's this idea in society that it's a male disorder. And so what happens a lot of time is that families and schools and GP's will go round the houses trying to find any other explanation other than autism. Often, by the time older individuals come to see me in clinic, they have amassed a huge list of other diagnoses along the way and if only someone could have said, have you thought about autism, should we investigate that?”

As as well as talking about autism in the documentary, Christine speaks about her relationship with food.

Looking back on my childhood in Liverpool, it’s clear that in secondary school my autistic traits and issues with socialising and eating became more apparent, and it was the same for many of the other women I’ve met.

Professor Happé explains, “Anorexia often ‘overshadows’ autism – so a clinician may diagnose anorexia but not dig deeper to see it is anorexia in the context of autism – which may require a different treatment approach. Approximately 25% of females going to services for anorexia may also meet diagnostic criteria for autism, but have never had the latter diagnosis.”

She says that you might want to consider the possibility of autism, as well as an eating disorder, in your child if, “they have also shown long-standing social communication difficulties and rigid/repetitive behaviour and interests that predate the eating disorder. If other family have an autism diagnosis, also make clinicians aware that they should consider autism.”

PEACE, a Pathway for Eating Disorders and Autism, has resources on their website for anyone with an eating disorder and autism, along with for parents and carers.

You can find more parenting advice about eating disorders in this Parents' Toolkit article.

According to Dr Colvert, there can be many positives which come from an autism diagnosis, “There’s you can get, it can open doors to things like reasonable adjustments. If you're thinking about a child at school, we can do all sorts of things to help with examinations and classroom set up.”

“But then there's this other part that a diagnosis brings, which is to help with identity and understanding of themselves.

The amount of people I speak to who say, "Oh, I've always known that I'm different. I've always known there was something different, but I didn't know what it was." It's like, "Oh, thank goodness, at last." There's a reason - there's an explanation.”

Now that she has her diagnosis, Christine is positive about the future…

I'm excited for life now. I want to live as much as possible. I need to live forever cos I've got three little children. But I really need to live for me too. And I want to. I'm not scared any more.

You can watch Christine McGuinness: Unmasking My Autism here on iPlayer.

For further reading - this BBC News article features an interview with Christine.

For further and reading on autism and diagnosis:

National Autistic Society.

Autism Research Centre at the University of Cambridge.

This BBC Action Line page offers links to organisations that can parents.

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