I need to help people visualise what Autism looks like | AUTISM AWARENESS

When the fabulous (it’s really the only word to describe her!) Stacey Leigh was looking for guest bloggers during World Autism Awareness Week, I knew I had to do it. As a Mum to a 3 year old severely autistic little boy, I’ve always thought about blogging to share my story. I’m not entirely sure why (I don’t know if anybody will find it remotely interesting!). I just have this feeling that I should do whatever I can to raise awareness, and help others - whether they have experience of autism or not. Autism shouldn’t be feared, or judged, or ridiculed, or ignored. It should just be better understood.

I’ve never written anything about my son Theo in the 3.5 years since he’s been born, so I really struggled knowing where to start. So much has happened in that relatively short time, an incredible rollercoaster of emotions and life changing experiences. How do I sum this all up in one post?! “Think about what you’d like other parents to know about autism. What would you like the world to see”- those were Stacey’s suggestions.

Ok, so if I want to increase understanding, I need to help people visualise what autism looks like in everyday life. Let me talk to you about Theo...

Theo is a beautiful (of course, I’m biased), happy, playful, funny little boy. He’s tall enough to be mistaken for a 5 year old and has the most amazing spiral afro curls and golden skin. He has a smile that can light up a room, and a laugh so contagious that nobody can stay mad about anything when he’s around! In many ways, he’s just a normal little boy who craves the things that make him happy.

Theo was diagnosed with Autism Spectrum Disorder, Global Developmental Delay and Epilepsy when he was just 2. He has suspected ADHD and Dyspraxia. All these medical terms and acronyms sound overwhelming. The reality is overwhelming too.

The first myth I’d like to dispel is that autism is caused by bad parenting, or ‘refrigerator parenting’ as I’ve shockingly heard it called. This upsets me on so many levels. Firstly, scientific evidence completely disproves this theory, and secondly every single autism parent will be beating themselves up with these irrational thoughts anyway (was I not healthy enough during my pregnancy? do I not spend enough time with my child? am I selfish for going back to work?). Judgement from others is the last thing they need.

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When your child is first born and the midwife places that little tiny bundle of joy in your arms, announcing ‘you have a beautiful, healthy baby boy/girl!’ there is an overwhelming sense of happiness and relief. My baby is healthy. My baby is perfect. Our biggest fear as parents is that anything could ever be wrong with our precious children. That was no different for me. Theo was born a healthy 7lbs 2oz after a relatively straightforward water birth. However, as the amazing newborn bubble passed and the weeks/months went on, I began to notice that something was very different about Theo. He was a difficult baby. He rarely slept. He cried all the time. He constantly needed me to comfort him (he was pretty much attached to my boob for the first year of his life – I can’t even explain the exhaustion levels!). He began to miss milestones. He demonstrated unusual behaviours. He generally seemed like he was struggling to cope with the world around him. Despite being brushed off as paranoia by others, my instincts were telling me that something was wrong. 

As the 6 month mark approached, the niggling term ‘autism’ was buzzing around my head like a persistent bumble bee. I kept trying so hard to push it to the back of my mind. Not him. Not my son. He is ‘normal’. He is perfect. I won’t let this happen to him. I couldn’t even say the word autism out loud. I spent hours researching the signs/symptoms, and it was honestly like reading a description of Theo. The evidence was overwhelming from a very young age. There was a constant cloud of dread hanging over me. I would cry myself to sleep, praying that I was wrong, praying that I was a paranoid Mum and was overanalysing everything (as usual!). I prayed that he’d have a sudden spark of development and would start doing all the things the other kids were doing. That he would wave, clap, point, give me eye contact……..say ‘Mum’.

It never happened. Eventually, just before Theo turned one, I put on my bravest, toughest Mum face and took Theo to the doctor. The words came flooding out of my mouth uncontrollably (the poor doctor) and despite being a GP and having very little experience with autism (shocking) – he shared my concerns and immediately referred us to a paediatrician. Theo was officially diagnosed when he was two years old.

Parenting a child with autism is about learning to adjust the way you view the world, and adapting your life to meet their needs. When Theo looks at the world, it’s muffled, clouded and overwhelming all at the same time. He can’t see clearly, or hear clearly because too many things happening at the same time cause confusion in his head. Everything is too much for him. Theo has to have set routines so he knows what to expect. He seeks sensory stimulation to help him cope. He likes loud noises, bangs, sounds, music – it helps to reassure and focus his mind. He like strong smells, tastes, textures. Theo has developed stimming behaviours and repetitive actions to give him stability and calmness. He flaps his arms, spins things (and spins himself!) shouts loud noises, throws objects, touches the wall repeatedly, opens and closes drawers in a certain order, bangs his head on the wall…..

See that’s the hardest part about his behaviours. He has no concept of social expectations, or of pain or danger. He will repeatedly bang his head against the wall so hard that it could seriously injure him, and this gives him a rush of adrenaline that he desperately seeks. There are no words to explain how upsetting that is. He will pick up every item he sees and put it in his mouth to explore the sensation. He will run into a road, or reach to touch something very hot. His behaviours can be both socially inappropriate and incredibly dangerous. He can never be left alone.

Theo can’t talk, and has extremely limited understanding of any words/phrases. Combine that with a headstrong 3 year old who knows exactly what he wants, and the outcome is extreme frustration. This is often manifested as meltdowns and aggression. He will hit/kick/bite/pull my hair/throw things in desperation. He will throw his whole body to the floor kicking and screaming. I mentioned that Theo is big for his age. He’s also very strong – he can really hurt me, and is very difficult to control, which is so upsetting for both of us, and anybody around us. 

The point of me describing some of Theo’s typical behaviours is not to complain about how difficult it can be. For all the autism parents out there, I hope you can relate to some of what I’ve explained and know that we’re all in this together, doing our bloody best. For anyone else, I’d like you to understand why some children may behave a certain way. Assuming that they’re just ‘naughty’ or ‘undisciplined’ kids is hurtful. In some ways I’d give anything for Theo to just be ‘naughty’ and not be dealing with the world of stress and confusion in his innocent little head. His actions are vital coping mechanisms, not disruptive behaviours. 

Despite all the challenges, my perception of autism has changed so much over the last 3 years. I no longer have that feeling of dread or fear. Understanding autism is an incredibly enlightening, enriching experience if you approach it with the right attitude. It undoubtedly makes you a more compassionate person.

Yes, I could sit here and list all the things that Theo is unable to do, and more of his challenging behaviours that are almost impossible to cope with at times. But I can also tell you about the everyday miracles that I see in my son. Once you have learnt that children with autism are just wired differently, it opens your eyes to another world that you could never see before. Who creates social norms and why are they right? What is normal? Why are certain behaviours or likes/dislikes seen as normal and others weird? Surely we are all just different and should be more accepting of our diversity? 

When Theo achieves something that seems minor to the lay person (he recently learnt how to kiss me which was HUGE!), it literally feels like a miracle. It’s like I’ve stepped out of the pressurised world of ‘normal’ parenting where it can be a competition to see whose child can do what first. Instead we focus on what is so much more important, whether or not Theo is happy. We appreciate every single moment that he is happy and every tiny development that he makes. I never compare him to others – he is unique. I won’t pretend it’s not hard (sometimes incredibly hard) when I look at other children Theo’s age and feel a huge sense of loss for all the things Theo isn’t able to do, but I know that I just can’t think that way. I have to be strong for him and I have to focus on all the positives and amazing steps Theo is making against the odds. At the end of the day we all just want the best for our kids.

 So in answer to Stacey’s initial point – I would like people to understand that behind every ‘tantrum’ or ‘badly-behaved’ child, there may be a whole world of things going on. Autism is a spectrum, which means there are kids much less extreme than Theo (who can talk, interact, socialise) but still face these daily challenges in coping with the world around them. Their ‘weird’ or ‘naughty’ behaviours may be the only way they can cope with a situation. Please don’t judge. Not the children and not the parents. You never know what somebody may be battling. And to all you autism parents out there – you ROCK and I bloody love you, you bunch of superheroes!!

 

Chloe xx

Instagram - @chloelouise.2