Autism awareness

For Autism awareness week & because I’m a huge advocate for inclusion across all forms of diversity I decided rather than raise money for a charity I would ask something simple, it will cost no money, I am just asking for your time.

Time to take a step back and educate yourself on something you may not know much about.

Time to take 10 minutes out of your day & understand somebody else’s world. I’d be a fan of us all doing this every week across the various diversity forms however this week my ask is you do so around understanding Autism

What is Autism?

Autism is a lifelong developmental disability which affects how people communicate and interact with the world.

Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. Below is a list of difficulties autistic people may share, including the two key difficulties required for a diagnosis

• Social communication and social interaction challenges
• Repetitive and restrictive behaviour
• Over- or under-sensitivity to light, sound, taste or touch
• Highly focused interests or hobbies
• Extreme anxiety
• Meltdowns and shutdowns

For more information - https://www.autism.org.uk or https://youtu.be/Lk4qs8jGN4U

One in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK & I have first hand experience with my son of the daily challenges e faces.

A typical day in my home usual starts about 3am. That’s the time my son (11) will wake & when he can’t soothe himself back to sleep. I’ll lie with him, offer to read a story, draw or talk but at least 50% of the time he simply can’t go back to sleep. He says “I hate my brain dada”. So we let him watch TV or YouTube/TikTok. I’m sure they are many of you reading this and thinking “ that’s bad parenting. You should just tell him to go back to sleep”.

You see I was one of those parents and I can simply tell you it doesn’t work like that. Everybody is different. Everybody is unique and every situation has its own context. My first takeaway would be don’t judge others for what you don’t understand yet.

He’s learnt to chill in his room in which we’ve put up fairy lights, led lights and lava lamps. We’ve purchased weighted blankets, sensory toys and fleece covers to help his sensory needs.

We’ll get up 7-730 and wake my daughter up (8) for school. We’ll make breakfast for them both which most days is either toast or cereals. As my daughter gets herself ready, me or my wife will begin speaking to my son to see if he wants to go into school.

He’s a school refuser and has huge anxieties around school since an incident 2 years ago which caused him to go into massive crisis. He has an EHCP and a autism worker to help him, however because it’s a mainstream school and the baseline learning is the same for all children it doesn’t meet his needs. Thankfully we have a great TAC (Team Around Child) around him and we’ve secured him a place at a specialist school (Ashcroft) from September, with transition starting very soon, which we're all excited about.

We’re all hopeful as the education is focused on nurturing and much more specific to our sons needs that he will flourish! Again for those of you thinking “why don’t you just make him go to school”. We’ve tried that too.

We’ve physically carried him & experienced his anxiety, his tears and saw him go into crisism, so we decided that is absolutely the wrong thing to do for our son.

Second takeaway; consider how much time, resources, adaptation & support is needed to ensure that the individual is comfortable in their surrounding

What else? Meal times aren’t too bad as he does like a variety of foods, however he can’t sit at the table with the family and if we cook something that has a strong smell that can set him off into crisis. Loud noises too are a huge challenge. Sometimes it’s not even loud noises but lots of noise, imagine a busy supermarket or shopping centre. The smells, the sounds, the expectation. Quite often these are far too much for him. Third takeaway - consider the environment you provide and how it caters for different people’s needs

End of the typical day. Bedtime...... This is a really hard thing for my son as he has huge anxiety about sleep (given he gets up early most days as can’t sleep). He’s prescribed melatonin to help, however often we have to time right when bedtime is. This is in some ways a contradiction to autistic traits. Autistic people tend to love & need structure. Where my son absolutely does generally need structure and time to process what’s next, or upcoming change; when it comes to bedtime we have to adapt to his mood. Is he relaxed? Is he stimming? Is he calm? Then like "trained" experts we go for it! “Right mate time for sleep”. Most of the time we’ve made the right assessment and he settles fairly ok, although we will sit with him to help soothe for anything from 5 to 60 minutes. Occasionally we’ve missed something and he’s not regulated himself enough for going to sleep. This is the most difficult time for him and for us. He goes into crisis. He gets abusive. He doesn’t know what he wants. He gets disruptive. Throws things, tries to break things and in extreme times (not often) he tries to self harm. This is an incredibly hard situation for us as parents. Somebody you love with everything you have needs help but they don’t know what they need or why. Our job is the keep him and everybody else as save as possible, whilst trying to stay calm ourselves. Try not to react by raising our tone or having the wrong expectations of him. I’ve been punched, bite, spat on and pushed. It’s hard not to react but always I don’t. My wife and I make a good team so if it gets too much for one of us we swap, like tag the other in. Eventually he’ll calm and become very calm, remorseful and anxious. I reassure him it’s ok. I tell him how much I love him. I cuddle him and make sure he knows he’s safe. He falls asleep. We sigh and our heart melts for him. Tomorrow is another day and most of the time he has no recollection. We don’t remind him but occasionally he’ll ask “what’s that on your arm” & I’ll say “it happened the other night mate when you was in crisis, but it’s ok”. I think it’s important not to hide this from him however it’s clear he isn’t consciously aware it’s simply a fight or flight reaction. Final takeaway - Assess every situation and individuals behaviour, whilst considering how they feel. What you are asking or about to ask of them, how will they feel. How can you support them and help they succeed.

I wouldn’t feel right to share these experiences without also sharing the love, laughter and joy my son brings to our life. He’s funny, smart, loving and caring. He’s the first to ask you if your ok if you are upset. He’s helpful and kind to others that have their own disabilities. His quick remarks and sarky comments light up our day everyday. He has an ability to know so much about a lot, which amazes me all the time. He gives the best, unconditional cuddles (when he wants to)!

If you’ve read this far I want to thank you. Thank you for taking the time to read a little bit about our experience living with somebody with autism. I’m hoping that by sharing this with you it helps with some real world takeaways you can introduce in order to help others (whether they have autism or not) fulfil their potential, destiny and dreams. 

If you do want to donate please feel free to do so: https://www.autism.org.uk/get-involved/donate