MY SON’S AUTISM DIAGNOSIS

HEALTH, MOTHERHOOD, PREGNANCY, BIRTH & BABY'S

Before having children, you often paint a picture of what you expect life to look like with your new family. But sometimes, that gets turned inside out. When Nicola Jeffrey’s son was diagnosed with Autism Spectrum Disorder, she suddenly found herself in the unknown; feeling lost, anxious and helpless. 

But over time, Nicola learned to let go of worrying about the future. She realised autism wasn’t something that needed to be ‘fixed’ and that her son, Scott, is exactly who he is supposed to be.

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  • I really feel that when you have your first baby, it’s like being fired out of a cannon. And when my second baby was diagnosed with autism when he was 3, I felt like I was being fired out of that cannon again.

  • But this time I was blindfolded and had landed somewhere where I didn’t speak the language.

  • My son Scott was a very happy, contented baby but around age two he started having intense meltdowns, what I thought were tantrums at the time. Around the same time his speech regressed, as did his social skills and he would soon be diagnosed with Autism Spectrum Disorder.

  • The label used to scare me, it kept me awake at night. What would life be like for my son, the happy chubby-armed baby who had not a care in the world, who suddenly looked like the weight of the world was on his shoulders?

  • I found myself googling ‘can a three year old have depression?’ in the small hours. I can’t explain how intense the worry was.

  • I look at this photo of the day he was born, the mum who had no clue what was in front of her. The unexpected struggles but also the overwhelming amount of love I would feel for Scott too.

  • The path to acceptance is easier to explain if I break it down…

  • 1. I had to stop thinking of autism as something to overcome. Firstly, it’s harmful to autistic people. Sure, he was diagnosed with a developmental disorder by a paediatrician but it’s really unfortunate that ‘early intervention’ is rammed down your throat immediately upon this news.

  • It felt like an immense amount of pressure during what was a really overwhelming time. There were definitely things and challenges that Scott needed support with, and behavioural therapy improved all of our family’s quality of life. Scott is so much happier as a result and for that I am so thankful.

  • There is something to be said about skills being easier to learn at a young age, but people can learn new skills and learn how to cope with things at any age, there’s no ‘deadline’ as I was made to feel. And people’s worth isn’t about their capabilities. Autism isn’t something you need to fix.

  • 2. Society needs to embrace autism and everything it has to bring. When I learned it was a disability I was shocked, so I’ve really had to address my own ableism.

  • The world needs different ways of thinking, which are capable of scientific discoveries and can offer new perspectives and so much more. But also autism allows us to learn how to care and have empathy for others. We are all unique and that should be embraced.

  • I had to learn to let go of worrying about the future. I have sat in many waiting rooms with Scott over the years, with lots of other autistic children and their parents.

  • There are the young kids being chased by their parents who are completely exhausted and frazzled. I have also seen a lot of autistic adults with their parents, both non verbal and highly verbal. And seeing them and their parents, seeing they were ok, has brought me so much comfort, and reassures me I can do this and Scott can have a really good life, no matter how different.

  • I think the worry about the future is huge for most parents. In the early days, the future was not something I thought about too much because the day to day was so difficult, I just wanted to make it outside without a meltdown.

  • I remember reading a blog of a mum who said the thought of her autistic son never saying the words ‘I love you, mum’ was too much to bear, but for me the bar was so low for how I wanted things to be better. So it wasn’t even on my mind.

  • I could make myself miserable worrying about the future but none of us know what that will look like and there is only so much we can control. I have to just focus on the right now and be thankful for every day.

  • 3. Now this has been the biggest thing for me. In the words of Penny Wincer, who I admire so much, I have had to accept that the world does not owe me a neurotypical child.

  • If someone had said that to me when Scott was first diagnosed, I would have been like, whoa, tough love. As Penny articulates so well, it’s a really important thing to understand in any sadness you feel. And that sadness is actually just about your own expectations. Our children are who they are meant to be and every personality and character is a wonderful thing to be cherished.

  • 4. Develop a thick skin. I have always been very sensitive to what people say and when it’s about your child and when a diagnosis is involved, you feel so exposed and that feeling is so much more intense. When Scott was diagnosed I got so many ‘sorries’.

  • Sorry texts, sorry emails, one text even came with crying face emojis. No. I reject all this now. I don’t want the sorries. Scott is a precious unique individual who deserves all the love and respect in the world. I think the ‘sorries’ are just people trying to show they care and they often don’t know what else to say.

  • If your friend is going through something similar, they are likely exhausted in every way. If you can, offer to help. Not a ‘let me know if I can do anything?’ but a: do you need a lift somewhere or anything from the supermarket? It will mean everything at a time when they are probably feeling quite isolated and alone.

  • Also, I’m sure all the advice and silly comments from people are just par for the course of being a parent. Whilst it takes me a lot of effort, just let it go like water off a duck’s back. It has made me so much happier. Have confidence that you know your child best.

  • 5. I had to forgive myself. When your child struggles, you instantly blame yourself. I thought it must have been something I did that would make him have meltdowns or not talk like other children his age.

  • At my lowest I thought this happened because I didn’t cuddle him enough as a baby. But I know that’s not true. It’s genetics, and learning that set me free. He’s exactly who he’s supposed to be.

  • Nonetheless, I’m only human and you’re not a bad parent if you find it hard. It’s really challenging when your son doesn’t talk. Sometimes I see a teenage boy on the bus and I wonder if Scott will ever be able to manage that on his own?

  • Or I’ll see a boy his age pull his mum’s sleeve to whisper something in her ear. And I wonder if Scott could tell me a secret, what would he say? But any thought like this only lasts a couple of seconds, because I remember that if that was the case, he wouldn’t be Scott, and that is too unbearable to think about.

  • 6. Love doesn’t need words. His nickname is Nature Boy because he loves the outdoors so much and I’ve had some of the happiest moments of my life on the beach together or with him sitting on my lap cuddled up on the sofa at home.

  • You’ve also never truly been hugged until you’ve been tackled by Scott and squeezed within an inch of your life. I am so blessed, and Scott can have a really wonderful life just as he is.

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HELPFUL RESOURCES:

National Autistic Society: autism.org.uk

NHS:nhs.uk/conditions/autism

Child Autism UK: childautism.org.uk

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FANCY SOME MORE?

–  READ The Imperfect Art Of Being A Carer by Penny Wincer, who cared for her mum and now cares for her son who is autistic and has learning difficulties.

–  READ Charlotte Adojan’s list Life In Lockdown With Our Autistic Son and her experience of autism while also trying to navigate a pandemic.

–  READ Awesome Ada And Autism, a remarkable, candid and good humoured list by Clare Wright about her daughter.

–  READ Katherine Kowalski’s list How My Children’s Disabilities Changed Our Lives as she explains how her eyes have been opened to the complexities, fragility and beauty of life.

–  LISTEN to Giovanna Fletcher on But Why? podcast as she discusses work and parenting, and the fine line between holding things together and consciously letting them go.

 

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OR HOW ABOUT WRITING A LIST?

Find submission guidelines here.  All writers and topics are welcome.

 

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** ‘But why don’t I feel happy all the time?’ ‘But why do people die and are they just sleeping?’ and “But why do adults drink beer and what does it do?’ are some of the tricky questions I tackle in my debut book BUT WHY? which is available to order now  and also on audiobook.**

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