Ahead of her book release, we spoke to the lovely Christine McGuinness about life with three young children all living with autism, dealing with judgemental people and her relationship with husband Paddy.
One in 100 children have been diagnosed with autism in the UK, and while autism is something we’ve probably all heard of, it’s an invisible disability that many of us know very little about. One mum who is very familiar with autism however is Christine McGuinness, who has three children all living with the condition.
In an effort to make more people aware and understanding of the disability, Christine is releasing her first ever autobiography which explores her life as a mum of three autistic children and the journey she has been on since receiving their diagnosis.
“I feel like I'm in the best place in life right now. So it was a good time for me to try and be open and talk about things that I've never spoken about before. Some of the topics that I've spoken about were really quite difficult, and I wouldn't have been able to touch upon those previously.”
It can be a very worrying time when you think there might be something to be concerned about with your child’s development. And if you’re concerned about their speech or the way they socialise with other children, you may be seeking medical advice to see if they have any conditions or disabilities. Christine admits that the diagnosis stage was a particularly tough time for her and her family.
“Even for those that might suspect that an autism diagnosis is coming, you still can't prepare for it. We'd never even heard of autism, we didn't know that it was common. With our youngest child, Felicity, we knew that she was autistic. So when we were going through that process, it was easier, but still hearing it on the day and getting that diagnosis was hard, but you just have to remember that getting the diagnosis doesn't change them. It just helps explain their behavior.”
At the time when twins, Penelope and Leo were going through tests, Christine was heavily pregnant with youngest child Felicity, which added to her stress and exhaustion.
“We had to go through hospital appointments, therapist appointments, food therapy, sensory play therapy, patient therapy, speech and language therapy as our children were nonverbal and all the time we were going to all these appointments, we didn't understand why nobody ever said to us that we're going through this process to try and get some sort of diagnosis.
“It just came as such a huge shock and the actual day itself that we were told was such a long day for children. We were in quite a clinical setting, and the children didn't like where we were as they don't like change. We were in a strange room, with strange people that they didn't know. Once four hours had gone by, they were crying their eyes out, we just wanted to leave, so I wanted to leave as well. Eventually, we were told that the twins were autistic and it was just at the very end of a long tiring day. I think that should be done on a separate day, with just the parents, when you've got time to ask all your questions. When you're told on assessment day what the outcome is, you're tired, you're exhausted, you're emotional.”
It’s natural after a diagnosis like this to blame yourself as a mum - was it something I could have done? Is it my fault? And Christine admits it took her time to overcome these thoughts and feelings.
“If your children have got a diagnosis of any kind of disability or condition at all it's not your fault. Autism is something they’re born with and it has nothing to do with how often I took them out to play dates, or how much you spoke to them, how much they watch television, what foods they ate. I questioned all of those things and it drove me insane. And now I know that it's nothing to do with what I was or wasn't doing - they were born like that. It's in their genes and that's how they are.”
Once the family received the diagnosis, Christine recalls how they were sent away with no support to help them learn more about autism, so it was up to them to learn more about it for themselves.
“You’re sent on your way, being told that your children have got this lifelong condition without any extra support or advice on where to go. So you just have to figure it out for yourself. I threw myself into research online, as I really wanted to understand my children.
“My husband was the opposite. He didn't want to read about it. He threw himself into work as he struggled with the diagnosis. He didn't want to acknowledge that this was it forever. It's been a couple of years now and he really looks into it as much as I do. Both of us are really passionate advocates for autism. We want to understand it. We want everyone else to understand it. And we want people to know that there are some really amazing positives, with being autistic.”
“Our children are funny, they're talented, they’re clever. They can do things that they couldn't do years ago. They talk now, they're having conversations. Their speech is not how it is for other eight year olds, but it's enough for us to have conversations and that's better than being non-verbal, so we try to keep hold of the positives. I just think you've got to keep trying and keep encouraging them.”
Christine hopes her book will help mums going through a similar journey to what she went on with her children and help them know that it’s not their fault, and that mums should never blame themselves.
While all mums deal with mum guilt, it has been particularly hard for Christine to take some time for herself over the years, and she admits she couldn’t bring herself to part with her children when they were younger.
“I didn't leave the twins until they were five. I just couldn't. It was the hardest thing that I've had to do. The first time I left them was actually to go and give birth to the youngest in hospital. I had prepared to leave them for one day with my mum who had been staying every weekend, so my mum knew them and I trust my mum and the kids love her to bits.
“Felicity ended up in intensive care, so I had to stay for a couple of days, so it did make me feel like, okay, it can be done, although it was in extreme circumstances. I didn't have a choice to come home, I had to stay at the hospital, but what that did make me realise is that other people are capable of looking after them.
“You've got to compromise with yourself and realise that you are entitled to a little dinner date, or a cup of tea on your own in the local cafe, or for a wash and blow dry - whatever you can do to try and make yourself feel a little bit better. You need to try and just enjoy the free time and not worry about it.
“I remember when they started school, and I sat at home for days just thinking about what my children were doing all the time, panicking and wasting my day. They were being looked after in a safe place. I should have just done something for myself. Now, it's been a couple of years and I'm at that point now where whenever I leave them, I know they're going to be looked after. I know that they can call me at any time. The more you do it, it does get easier. It's difficult, but it does get easier.”
We all know that children can put a strain on any relationship, so it’s no surprise that Christine and Paddy’s relationship was challenging during those first few years after the twins were born.
“The first couple of years it was difficult. We couldn't have time together. We couldn't have a date together. We couldn't have tea at home together because the children's needs were so demanding. They needed all of our time and every single second of our day was with the children. We would often have to separate them into different rooms because they would set each other off with meltdowns.
“As time has gone on, they've gotten so much easier and they now play together, which they didn't do when they were toddlers. So we can now sit and have a conversation, and when they’re at school we can go out for lunch. We still find it difficult to go away overnight together, but we can do stuff during the day, and that's something that we couldn't do years ago. It was hard at the time, but now everything's falling into place. The children are growing up, we’re getting a little bit of free time and it's been lovely.”
Christine has spoken very candidly in the past about the confrontation she faces from members of the public who can often pass judgement on her children. Whether they’re having a meltdown in public or they’re questioning why she is parking in a disabled bay with them, she admits she finds it hard to deal with the comments and stares.
“The looks and the stares and the comments never get any easier. I always know that I can’t take it out on somebody else for not understanding. So if somebody is having a go at me for parking in a disability bay for example, or, if we were to go somewhere wearing a sunflower lanyard where we might get a queue jump or something like that, I know that I have to just keep my focus on the children. I can’t concentrate on other people saying ‘oh, why are they doing that? They're able bodied’ or ‘why are they parked there?’ You can't listen to it, don't take it on but you've got to stay focused on your children.
“They would not be given those things if they weren’t entitled to them. You need to do what you need to do to keep children safe. You can't worry about what other people think. If anybody ever approached me, I would keep calm. Try to educate them. Explain to them that they've got a hidden disability that you can't see.
“I just hope that as time goes on, the more we talk about it more and more people will understand and those things will stop.”
As well as her book, Christine and Paddy have also made a documentary which you can watch December 1, 2021 on the BBC. It’s set to explore they’re life at home and the everyday challenges they face as a family.
It’ll also help viewers learn more about autism and delve into the causes and genetics behind the condition, which is where we see Christine being diagnosed with autism herself.
“We've tried to cover as much as possible, although as we know, autism is a huge spectrum and it affects people differently. There are so many people we spoke to who are unemployed, simply because they're autistic, and something that we want to try and change is the stigma around it and hopefully, have people accept autistic people a lot more.”
Christine’s tips for dealing with those difficult days
It’s normal to go through tough days when you’ve got children with autism. And whether they’ve had a bit of a meltdown or you’re finding things particularly hard that day, Christine thinks it’s important to give yourself a break.
Don’t be too hard on yourself
If you have friends and family around who know your children, then let them take over for an hour while you nip out and have a cup of tea on your own to get some peace and quiet. All children can be difficult at times, and when you've got children with additional needs, it can be exhausting. If you're running on empty, it's challenging for everyone, so don't feel guilty about having an hour to yourself. If you've got a family trust to look after your kids then do it. It's something that I need to start practicing myself more.
Don't try to fit in with neurotypical children
Don't put pressure on yourself to try and go to every birthday party or every event at school. There are some things you've just got to accept that our children aren’t suitable for. Don't try and think that you've got to go on a summer holiday every year because that's what families do. That's what we used to do and we put so much pressure on ourselves to try and do all of the things that other families do, when most of the time, we were upsetting our children. We were trying to be like everyone else, but some things just aren't suited to our family.
There are times when you're in a really challenging moment, when your children could be having a meltdown over something that most children wouldn't have a meltdown about. It might be that the remote control batteries have run out, or they can't find the charger for their tablet, and that can trigger such a huge meltdown for them. Just remember that it will pass. Every day is a new day. It does get easier. I remember people telling me it does get easier and I was thinking there's no way this is going to change, but it does. For me every single autistic person I've met is just amazing, inspiring and kind. I feel very, very fortunate to have my children in my life. They're amazing.
Image credit: James Rudland @thebarn.sussex