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And now, to our story...

If you know anything about autism then you’ll know that no two autism-related stories can ever be the same. Just as no sun will rise anywhere in the world with the same beauty and conditions twice. 

When autism is in your life, it changes you.  

It can impact you daily, for better or for worse, in ways we simply can’t describe or compare.  It’s hard to relay to anyone else what our journey feels or looks like, but I’m going to give it a go, but please just remember, it’s through our lens only…

My 15 year old daughter is known to many of you – she’s a force, to say the least. 

The girl’s got serious ambition. She is currently doing her GCSEs – aiming to go to 6th form to step her way towards a higher degree later in social anthropology. And she’s so bloody-minded that I know she will achieve her dreams. Even when every door, like now, is closed to her.

You see, she doesn’t go to school anymore.

Not because we decided to home school. Or because she’s a forthright teen who’s refusing to go.

She can’t go.

Going to school, crossing the threshold even just to get into reception is, in her words, ‘like walking into a burning building.’

Read that again.

It’s like walking into a burning building.

The pain, the fear, it’s all real.

Why would I keep putting her through that every day? It doesn’t make sense.

Her sensory processing explodes, and the closer we get to the building, the harder and longer she will go into shutdown. And the chronic pain doesn’t let up. Out of 10, she’ll start at around a 7. For you and me, only the strongest painkillers will relieve pain.  Check out the Mankoski pain scale…  and remember…

She STARTS her day at a 7.

Sometimes we can get that down to a 5. And sometimes, it climbs up. What does that look like? Well, she can struggle with communication, constant dizziness and nausea, anxiety levels go through the roof, hypervigilance is excessive meaning she’s on constant alert and feeling under threat. The slightest change, ones that you and I do not notice, are vastly overwhelming to her, and can trigger her next meltdown or shutdown – getting to know the difference in those beasts has been a journey in itself. And she can’t talk to friends, because social interaction is painfully difficult for an excess of reasons.

We don’t always know the triggers. You can’t predict it. Each day is different for all of us – but it isn’t without light. Because her humour is as dry as it gets. The difference in her brain wiring and view of the world means she can find things to get that dopamine in ways we never would have thought of. I’m now used to checking in first to see what each different action means, does it signify pain or happiness? 

She was diagnosed with ASD, along with other mental health related concerns, over a year ago. And while one member of the SEND team at school has tried to guide us, fight our corner, and move mountains to make sure she can access education – every child’s right – Suffolk and the school in question falls way short. They have little to no budget. The wait lists are excruciating. The limited assistance provided is at a devastatingly low academic level, it’s clear they don’t expect students like her to flourish. They claim she’s ‘paving the way’ for other students like her, but if she has to found all the support, who supports her? We’re still waiting for support – whatever we have achieved has been because we fought really bloody hard and shouted loud or paid privately. And we know, we’re the lucky ones.

The state of awareness, education, support and acceptance in East Anglia is crippling for all those connected to autism. In her words, any and all awareness about the topic is redundant at best and actively harmful at worst.

If me running a silly half marathon can raise just a little bit of money to help others who haven’t been as blessed as we have then let’s do it.

I am literally bursting with love and pride and admiration for my girl. She is off the charts inspiring. Resilient, much? She takes the crown. Getting up every day, and saying ‘we go again’ – that is real and raw power. Watch out because she will, like many of our amazing children with ASD, change our world for the better.

What will your donations do?

Donations are used to help Autism Anglia continue to improve the lives of people with autism in this  region. From art materials (£50) to sensory equipment (£100), parent training (£500) and IT equipment (£1000).

Did you know?

More than 1 in 100 people in the UK are on the autism spectrum.

Autism is not discriminatory – it affects both sexes, but more men and boys are diagnosed than women and girls – at a ratio of 3:1

Around 700,000 people in the UK are autistic, but only 21.7% of autistic adults are in full or part time employment