Throughout this year I have had many people asking me why I chose The National Autistic Society as one of my charities to support. My struggles with depression and O.C.D are well documented and fully cement my desire to represent both HomeStart Deeside and Mental Health Aberdeen. My advocacy for NAS however is a way for me to say a “Thank You!” to my beautiful friend Natalie, who has helped me more than she will ever realise on my journey, not only this year, but for years before, and I know that she will continue to be a rock in years to come. Natalie has her own blog – Rainbows and Lighthouses – and I asked if she would do me the honour of writing a guest blog post here to tell her own story, and to let you all see why The National Autistic Society is a charity of huge importance to me…
Guest Blog – 30 Things for 30 Years. By Natalie – Rainbows & Lighthouses
I was so honoured when my beautiful friend Victoria asked if I’d like to write a guest blog for her 30 things for 30 years.
Victoria and I first met a couple of years ago, when I was suffering from PTSD after the traumatic and premature birth of my second daughter. After her own perinatal mental health struggles, her loving nature had lead her to reach out to the local midwives in the hope she could set up a support group and they had given her my number.
She knocked on my door one day and I broke down and sobbed to a total stranger. She sat with me, listened to my story and for the first time I felt truly heard and understood. She told me about her own experiences and I didn’t feel alone anymore.
In that moment, I knew I had to help her with the support group as I could not allow other women to be sat in their homes feeling the way that I was feeling – like there was no way out.
That encounter lead to us founding Deeside Pandas and a friendship that will last a lifetime.
I can remember the first time that Victoria told me what she was planning to do for her 30th Birthday (her 30 challenges to raise money for charity during her 30th year). She told me that she had an important question for me…. and asked if I would be okay if she chose an autism charity to benefit from her challenges and asked if I would help her choose a charity. I cried. In fact I’m crying now just remembering that moment.
See, not long after we first met my eldest daughter was diagnosed with autism. Victoria was so supportive during this time, and when she asked if she could support an autism charity she made me feel heard and supported all over again. The fact that our story had touched Victoria enough for her to do this meant the world to me.
On the day my daughter was diagnosed, I had been expecting it, as over the previous 12 months my daughter had regressed developmentally. She had lost spoken language, no longer interacted with us, and was showing several red flags which indicated an Autism Spectrum Disorder. That day of the diagnosis was the day I realised that our future wasn’t going to look like everyone elses.
So in deciding what I was going to talk about for this blog, I thought I’d shine a light on autism so that you have an insight into what this looks like in reality for us.
So what do I want people to know about autism?
The current prevalence of autism is classed at 1:100 in the UK. In the US it is 1:60 and indications show it may well be closer to 1:30 as many people go through life undiagnosed due to a reluctance to put a label on children. This means that it is far more common than people think. As a result, there is a significant chance that a child in your child’s class has autism. The rate of diagnosis is growing at an alarming rate which means there are probably environmental factors that are increasing the prevalence of the condition.
It is a hidden condition, which means that you can’t always tell if someone is autistic. It is a developmental disability that affects how your brain works. According to the National Autistic Society, it is incurable and affects people in a variety of areas including:
People with autism can have difficulty in interpreting both verbal and non verbal communication like gestures or tone of voice. Some may not speak, or have limited speech but will often be able to understand more than they can express. Others may have good language skills but struggle to understand social norms and expectations. They may struggle to read or understand the feelings or intentions of others. They may find it difficult to make friends, despite wanting to.
Some people with autism can struggle to handle changes to routine. For example my daughter has to walk certain routes to certain places, or eat things in a certain way. It can be very distressing for her if there is a significant change to her “norm”.
Often people with autism struggle with over or undersensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, my daughter is a sensory seeker, which means she has an unusally high pain threshold and seeks sensory stimulation from impact or spinning.
For my daughter, I want to share some things that I think would be helpful for parents of children to know so that they can help their children relate to her and others like her.
• She may not respond to you but that doesn’t mean she doesn’t want to play. Let her be involved in her own way.
• She may not speak but that doesn’t mean she doesn’t have something to share.
• She may not understand social norms. She is exploring and trying to make sense of a world which can be triggering for her.
• Just because she doesn’t react doesn’t mean she doesn’t feel.
• Just because she doesn’t communicate it doesn’t mean she doesn’t understand.
• Just because she doesn’t sit or give eye contact doesn’t mean she isn’t listening. She just needs increased sensory input to be able to process simple things like listening.
• She needs routine, struggles to handle change and needs time to process things.
But most importantly
• She shows us NEW ways to communicate and NEW perspectives to view the world.
• She has potential.
• And she will change everyone she touches.
As a thank you for choosing the National Autistic Society as one of her chosen charities, I have offered to join Victoria in one of her challenges and next month we will be cycling the entire Deeside Way together. So if you feel called to donate some pennies to support us I will love you forever.
And finally…. To Victoria…. I couldn’t be prouder of you. Thank you for being such a rock to me, for choosing to support something so important to me, and for making me snarf my tea pretty much every time I see you. To lots more laughter and magic together.
<3 You are an inspiration.
Written by Natalie from Rainbows & Lighthouses (www.rainbowsandlighthouses.com) @rainbowsandlighthouses.