Paddy & Christine McGuinness - Our Family and Autism: Advice for parents

Paddy and Christine McGuinness have three autistic children. As they explain in the �鶹�� documentary Our Family and Autism, parenting a neurodiverse child can be uniquely rewarding, but also comes with its own set of challenges.

In the program Christine and Paddy speak to Professor Simon Baron-Cohen, Director of the Autism Research Centre at the University of Cambridge, who helps them to better understand autism. The Parents’ Toolkit has also spoken to Professor Baron-Cohen, as well as the National Autistic Society. Both have advice for other parents of autistic children.

Understanding autism

You might already have some understanding of autism – or you might feel you know nothing about autism at all. Paddy McGuiness shared how he felt, “To be honest, I found this hard to come to terms with. And we’re still trying to work out what it means for our family and our future.”

Professor Baron-Cohen says that understanding neurodiversity is an important part of parenting an autistic child, “Start reading about neurodiversity - which refers to the idea that there is no such thing as a normal brain, but rather that all brains are different, with different strengths and challenges, and none is better or worse than another.”

Dealing with diagnosis

Accepting that a professional has diagnosed your child as autistic can be difficult - something Christine McGuinness shared, “I was convinced she was wrong, because I knew nothing about it. I saw all of the things, I saw all of the signs and symptoms, I just didn’t realise they were different.”

The National Autistic Society says, “If your child is autistic, getting a diagnosis can be very positive. Your child is the same person they’ve always been. But now that you know they are autistic, you can get a better understanding of their needs and the strategies and support than can help them to maximise their potential.”

And this diagnosis can help you as a parent to access the services you need to support your child - exactly which services will depend on what your child needs as an individual.
“Diagnosis can serve as a passport to getting help, such as school support, parent groups and for some children with higher levels of need, an Education & Health Care Plan…” (or in England or the equivalent in , and where there is a .)

“This will help you access support for your child. Support can range from speech therapy, occupational therapy, music therapy and social skills teaching, to extra classroom support” says Professor Baron-Cohen. Children without an EHCP can also access support in school according to their need.

As parents it's important to engage with the professionals who are involved in creating the plan for your child - that way you can feel empowered to seek adjustments if the support your child needs is more than is being offered, or if you’ve been told your child’s needs aren't severe enough to warrant support. If your child has a diagnosis then they must be struggling to some extent, or the diagnosis wouldn’t have been given, so it is good to keep the conversation open.

Celebrate the positives

Paddy McGuinness talking to his daughter

Professor Baron-Cohen points to the science:“Celebrate the positives that autism can bring your child in their interests and passions. Autism is strongly genetic and new research shows that genes linked to autism are also linked to aptitude in pattern recognition and understanding how things work. Many autistic people also have excellent attention to detail and memory for detail and an ability to go into topics in remarkable depth.”

Celebrating the positives of autism is something Paddy has embraced, “When I’m in bed with my son doing his bedtime, the stuff he comes out with because of the autism - I love, and I cuddle him, and I kiss him, and it makes me feel better.”

“There’s nothing wrong with our children or autistic people, it’s everyone else around just needs to understand, the world needs to accept them more.” – Christine McGuiness

Autism – the law should be on your side

As Professor Baron-Cohen explains - there are legal protections for your child, “Know your child’s rights under the : Autism is a disability and people with disabilities have a right to support for their special needs. The Equality Act requires society to make reasonable adjustments to meet the needs of someone with a disability.”

This �鶹�� News article shows how workplaces are acknowledging the importance of neurodiversity.

Mental health

“Address your child’s mental health as sometimes, by the time a diagnosis is made, a child has already started to feel bad about themselves. Counselling and therapy may help as does - for instance - music or other activities a child can enjoy” explains Professor Baron-Cohen.

But that doesn’t mean you should ignore your own mental health. If you are finding things difficult to cope with, you’re not the first parent to reach out for help. Paddy explains how he sought professional help for himself, “I got that down - I had to see a psychiatrist and he diagnosed me with clinical depression. I used to think I’d be the last person in the world who has depression - because I earn a few quid.”

This Parent's Toolkit article can help parents find who to ask and what to do when waiting to access mental health services.

Support at school

A teacher explaining something to a child

Speaking to your child’s teachers is the best way to ensure they’re supported at school.

The National Autistic Society advises that when it comes to schooling, every autistic child is different, “The majority of autistic children (over 70%) are in mainstream school, in many cases with extra support. Others need more specialist education and some attend autism specific schools.”

“Schools have a duty to identify, assess and meet needs as well as keep them under review. For instance, by making sure their teacher(s) and other school staff understand their autism and consider making small adjustments, like ensuring there’s a quiet place to go if they’re ever feeling overwhelmed or using a social story to explain something they’re concerned about.”

This Parent’s Toolkit article may help you: Schooling tips for parents of autistic children

Masking – not all autism is the same

Professor Baron-Cohen thinks parents should be aware of masking. It’s something Christine - who discovers during the documentary that she is also autistic - realised she’d been doing her whole life, “I usually try to mirror whoever I’m around.”

“Some people may try to hide their autism, perhaps because of stigma, and this can lead to anxiety and stress as the person doesn’t feel they can be themselves. This may be more common in girls, perhaps because there is greater social pressure on girls to be communicative and sociable” explains the Professor.

Use reliable sources of information

It can be easy to spend hours sucked into searching the web for advice, but Professor Baron-Cohen urges caution, “Be aware of misinformation about autism. For example, some treatments are claimed to be effective for autistic people’s symptoms but there may be no evidence behind the claim. Always check the source of information and go to trusted sources" these may include charities like the National Autistic Society, Autism Alliance and Ambitious About Autism or government funded sources like Scotland's ”

It’s good to talk about autism

Christine McGuinness talking to Professor Simon Baron-Cohen

It’s easy to convince yourself that no one else would understand the issues you’re dealing with as a family, but there are lots of other parents in a similar position and sharing experiences with them can be helpful.

Professor Baron-Cohen suggests parents should look for autism help-groups and organisations nationally and locally "…to get support from other parents in your area, so you can talk to and other parents and share tips, advice and information.

“Develop good communication to talk to your child about autism so that they know they can ask for help.”

For Paddy, talking about autism has become really important. “If anyone mentioned the word autism to me, I’d be like I don’t want to speak about it, I don’t want to think about it but now I’m finally talking about autism, I just wish I hadn’t spent so much time trapped by the fear of it all.”