X Factor winner Sam Bailey recently talked about her son's autism diagnosis on Loose Women, so we caught up with her to discuss it further, in particular what advice she can give to other parents as we head into a new lockdown, further increasing the strain on struggling families.
Please tell us how you found out about your son's autism.
I first learned about Tommy’s Autism back in July. I’d noticed some changes in his behaviour around 4 years ago that got me questioning a few things. For example, his dislike of certain songs and loud noises. After six weeks of appointments with a private doctor, Tommy was eventually diagnosed with both autism and dyspraxia.
Did it come as a shock to you and your family even after noticing these changes?
It made me feel sick to my stomach. Not because of the diagnosis itself, but because it came so late and was so delayed. I feel really guilty because, in a way, I knew there was something not quite right with Tommy’s behaviour, but it went undiagnosed for so long. I could tell he was different to the other kids at school, I just couldn’t figure out why. When we got the official diagnosis, everything sort of clicked and suddenly it all made sense.
I was pretty upset at first, as I think any parent would be, but after two days I’d already bought a t-shirt saying, “I Love Someone with Autism”. I got a huge sense of relief because we finally knew what was going on. In fact, I even made Tommy celebrate his new diagnosis.
You have recently talked about this on Loose Women, so why is it important to you to share your experiences of parenting a child with autism?
I feel a lot of guilt as a parent because of how I used to tell Tommy off for things before being made aware of his autism. I think it’s important for parents of children with autism to understand that their behaviour can chop and change quite a lot and needs to be handled with care. Tommy rarely ever talks back to me because he hates getting into trouble, but he can sometimes have meltdowns and shout at his siblings because he’s so emotional.
I also think its really important to make sure children with autism are not ashamed of who they are. Tommy suffers with quite low self-esteem and so I want to raise as much awareness as I can so Tommy, and any other kids his age, don’t feel alone.
What have you had to change as a result of your son's diagnosis in terms of family routine and time together?
One of the biggest things is going out to eat as a family. Unless its McDonalds, I know Tommy will refuse to eat anything. All his food has to be separated. I have to examine his chips because of they have any marks on them at all, he won’t at them. We’ve learnt not to be angry at him because we understand now. Before, we’d tell him to stop being fussy but now, we do everything we can to support him.
He can struggle a lot with changing routines and starting a new school week, so we need to make sure we’re patient with him to give him the best start to his week.
If other parents are worried about their child, what signs should they look out for?
With Tommy, a lot of his signs were behavioural. This included having low self-esteem and slowly becoming more and more withdrawn. He can struggle to socially interact with people too because he can be so innocent and naive, so he doesn’t always understand how to act in social situations.
He’s also extremely sensitive to “banter” and used to come home from school feeling really upset and saying he was getting bullied.
Do you think there is a lot of misunderstanding around autism?
I think, like with many other conditions such as mental health problems, there’s a bit of a stigma around autism. Tommy has received some comments from other kids at school, with one classmate saying he had a “brain malfunction”.
With enough awareness raised around the topic of autism, I think that stigma will start to fade and more people both young and old will start to have a better understanding of the condition and realise it doesn’t make someone any less of a person.
What advice do you have for parents of children who have been diagnosed but face another lockdown?
Just like Tommy, many children with autism struggle with a change in routine. I think its important to create a safe and comfortable environment and be really patient with your kids as they settle into this new routine.
Lockdown can take its toll on anyone’s mental health, but especially those with autism, so my advice is to be as kind, understanding and supportive as possible.
How can autism put a strain on families?
I think the biggest strain is when you have other children who don’t have autism. They might not understand that their sibling gets treated differently to them, so its important to explain why as best you can. Of course, spending time together as a family can be difficult, especially because children with autism can get overwhelmed in public places and in venues such as restaurants. Everyone just needs to remember to take each day in its stride.
What are the next steps once a child has been diagnosed as autistic?
Straight away, you need to get a better understanding of how you can support your child. Make sure you get all the information you can on how to look after a child with autism. Tommy also wears a “hidden disability” lanyard when we go out. This really helps because people can see that he has a hidden condition and so they don’t say anything.
Once Tommy got his diagnosis, I could tell his school to make sure they were prepared too. Its really great to see how well he’s getting on now we went public with his diagnosis!
You have a number of Christmas projects to help battle loneliness and isolation so please can you tell us about these!
Mental health is something really close to my heart, so I wanted to make sure I was doing all I could to keep people’s spirits high and to create a feeling of positivity, especially around the festive season where some people can really struggle.
I was so pleased with the success of Bailey’s Cuppa Crew during lockdown that I wanted to turn my attention to Christmas time. I’ve been inspired by Tommy to make sure no one feels alone in what’s supposed to be the happiest time of the year, so I’ve started a new campaign, Buddy up with Bailey. It enables people with no adult company during the festive season to team up virtually and share Christmas together.
I’m asking anyone interested to log their details on my fan site so I can start teaming them up straightaway, and, as a bonus, I may even pop up on their call come Christmas Day!
With Britain back in the midst of local lockdowns and many opting not to go to the pub, X Factor's Sam Bailey has come up with a solution and built her own backyard pub. With everything from a fully stocked bar, to darts, a smoking area and Sky Sports on the big screen. We caught up with her to find out how she is settling in to her new local... to read more click HERE