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The day we received her diagnosis: (autism spectrum disorder) ASD

My phone rings and it's my youngest daughter's daycare, "Penny won't come inside, we think she is scared of the air conditioner". 

This day. I will never forget this day, or this phone call. Now you may be thinking, this seems trivial. How can a call about an air conditioner ring alarm bells? Well. It was the day that solidified my gut instincts that there was something 'different' about our little Penny. It was the start of our journey to realising our baby girl has special needs. 

I, for months, was communicating with my husband that Penny seemed to find certain 'normal' tasks challenging, and that her toddler meltdowns weren't 'normal' (I use this term loosely). But, what is normal? I hear you. Call it motherly instinct, or the fact that I am very aware of the special needs community after growing up with a brother who suffered from an ear infection at just 2 years old, and never recovered leaving him severely brain damaged. Either way, I JUST knew our Penny was struggling and I needed to take action.

What next, you ask? Well it all seems like a blur really, as I sit here quietly on our couch with a peppermint tea and write this journal entry; two and half years on. I wasn't going to share this (a lot of people hesitate to share such personal thoughts). However, before experiencing this for myself I had some of the same misconceptions that many people have about (autism spectrum disorder) ASD. And, I wanted to address those misconceptions and help raise awareness and understanding. So. What I did next is write incidents down. This could be exhausting. Actually, it was exhausting. Who wants to document negative or unusual moments about their child? No one, especially their mother. I tear up thinking about this. I feel like I was robbed of documenting those wonderful milestones I was able to do with my eldest. Instead, I was in a constant state of stress and concern.

Every 3 months I would book in to see our (very caring) GP who specialises in paediatrics and share these said 'incidents'. This offered us a reprieve. A reprieve because I could step out of my own thoughts and share my concerns with a supportive professional who put my mind at some level of ease. I used to ask 'am I overthinking this'? Does this seem 'normal' (again, I use this term loosely) to you? But, deep down I knew things weren't right and we needed help.

It took us close to 2 years to get Penny's diagnosis, (autism spectrum disorder) ASD. I think a lot of people assume it's a quick examination, or a few specialist appointments and VOILA, you have a diagnosis. It's most definitely the opposite. Especially for a young child. I also want to preface that I am speaking from my own personal experiences.

The day we received her diagnosis: I remember this day so vividly. I balled my eyes out. I sat beside our softly spoken Developmental Paediatrician as she read out Penny's results, and tears quietly ran down my face. I am crying as I write this now. It's just a lot to comprehend. It shouldn't be called a 'disorder' in my eyes. In so many ways it's a blessing. But, our world isn't made for (I believe) neurodivergent people. As parents we feel this overwhelming sense of protection for our babies, and this felt completely out of my control, hands and heart. How do I articulate this feeling for you? It's a chest pain. An actual heart ache. Your mind races through their life...how will they go to school? How will they socialise? How will they look after themselves without me? How will I, as their parent, protector, and carer know what's best for them when I don't even know what they need right now? 

I walked back to my car, numb. I called Mum and sobbed, not being able to catch my breath. Mum: "Can I do this?" I know you're thinking - how can you ask that question, your Penny's mother. However, I have watched my mother care for my brother for over 30+ years, and it is NOT EASY. I have seen firsthand how exhausting caring for a special needs person is; parenting is hard enough as it is, let alone caring for a loved one who cannot care for themselves. No matter how much you love your child. Please understand this. 

Fast forward 2 years, and here I am documenting my thoughts because we've come a long way. We can identify Penny's struggles: sensory issues, restricted/repetitive behaviours and social interactions. But, Penny is also very joyful, loving, incredibly clever and very humorous...she also loves animals (especially dogs). I feel grateful that we got her diagnosis when we did, and have been able to support her in ways that I never thought possible. I count my blessings every single day that we were chosen to be her parents. But, we also have incredibly challenging days. And, I also want to share that if you see a Mummy or parent, who is clearly having a 'difficult moment' please choose kindness and not judgement, ask if they need help. They don't need your advice, they just need support in a moment of need. 

Please understand that when someone says "but she doesn't look autistic", that Autism isn't actually something you can see. And although autism is diagnosed by a series of symptoms, they are also not always present. 

We (team Penny) have unique challenges, i.e transitioning: I have literally sat on the floor at a multitude of shops while Penny has a complete 'meltdown' because she is too heavy for me to physically carry out of the store and we need a moment (hour) for her to process a situation. This is very hard to explain..."she is just having a tantrum, isn't she?" No. No she is not, it is not the same as a tantrum. Trust me. I have had many strangers say to me "gosh you've lost control of her ''. And, in that moment an unwarranted negative comment is NOT helpful. at all. Should I say, 'oh yes I have, I am such a horrible mother'. Is that the response you are looking for?

And, while I sound like a whinging parent, this is definitely not a 'pity party'. Life is messy. Life is a rollercoaster. For every up, there is a down. And, like many parents, we are doing our best to navigate life with a daughter on the spectrum. A spectrum so vast that you cannot box people with ASD into a certain mould. The term “spectrum” is used to emphasise that autism presents differently in every single person. People with autism have a wide range of challenges as well as abilities

I thought if I listed out a few statements that we have struggled with in the past few years - it may bring awareness of what not to say to an autistic person, parent or carer. 

  • ‘You don’t seem autistic.’
  • ‘You’re so high-functioning.’
  • ‘We’re all on the spectrum.’
  • ‘Girls aren’t autistic.’
  • ‘Everyone seems to be getting diagnosed these days.’
  • ‘You don’t act like my brother/sister/nephew/cousin with autism.’

  • Things you could say or ask: 

  • What interests you?
  • How can I help?
  • Do you need support?
  • Is there something I can get for you?
  • Would you like to talk about it?


  • Signing off with love, Bek x
      2 comments

      Absolutely amazing Bek. You are a true inspiration to all mums. Penny is so blessed to have such supportive and proactive parents in you and Pete and a gorgeous, loving big sister in Wendy. Thank you for sharing your journey.

      Jessica

      Oh Bek, how brave of you to post this blog, you are an amazing Mum and Penny is a blessing. ❤️❤️❤️

      Kristie Langley-Gliddon
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