It’s World Autism Awareness Day!
Though it’s going to be hugely overshadowed this year by the Coronavirus crisis that the world finds itself gripped by, it’s still a day we can choose to recognise and celebrate.
Usually around this day social media is full of people raising awareness by lighting it up blue, red, gold, multi-colours, having tattoos, or taking part in fundraisers.
This is all fantastic, I’m a big supporter of all of this. Awareness is a fantastic start, but this needs to be the just first step. It’s easy to be aware of something without really understanding it, and understanding and acceptance has to be the bigger goal.
Back in 2009 I had no real idea of what autism was. I knew it was a disability and I’d seen Rain Man, that was it. I’d never met anyone who was autistic and I never expected it to play any part in my life.
My first son, Jude, was born the year before, and I was happily settling into fatherhood. By the time Jude was 18 months old he had been diagnosed with autism. Three years later, my second son, Tommy, would also be diagnosed, again at 18 months old.
Autism quickly became part of my everyday life. It became my normal.
To celebrate World Autism Awareness Day, here’s 20 things that I’ve learnt about autism over the last few years that I think are important everyone should know.
They’re all from my point of view as a parent of 2 autistic children, what they have taught me, and what I have learnt from others in the autism community on our journey.
1. Autism is a developmental disability that affects how a person communicates with and relates to others.
This might lead to them being seen as anti-social, which isn’t always the case. They may find it difficult to express what they need and how they feel, which can make life extremely challenging at times
2. Autism is a spectrum.
Whilst everyone with a diagnosis will share some common traits, autism will affect them in different ways. Everybody is different. This may make it more difficult to understand, but it’s very important you do. Treat everyone with autism as you would anyone else, as individuals
3. You cannot tell a person has autism just by looking at them.
Autism is what is sometimes called an ‘invisible’ disability. There is not a certain look. Telling someone “oh you don’t look autistic” is not a good thing to say
4. Autism can affect how a person is able to make sense of the world around them.
This confusion can cause anxiety and behaviours you might feel are strange. Be patient. Try to understand.
5. Not everyone with autism has a ‘special’ ability like Rain Man.
Please don’t assume they do. When someone tells you their son has autism, don’t ask them “ah, ok, are they really good at maths?”
6. Nobody knows the cause of autism.
Lot’s of people say they do. There are hundreds of theories out there, but nobody has a definitive answer. What causes autism is not the most important thing. How we accept and enhance the lives of people with autism is.
7. Hollywood and TV portrayals are not always true
What you see on tv or in films is what it is like for one person with autism. It is not always accurate (although recently much better), so try to realise that everybody’s story is different
8. Somebody having a meltdown is not the same as someone having a tantrum.
There is a difference. During a meltdown a person loses control of their feelings and actions. A meltdown can often lead to self-harming or self-injurious behaviours. Getting angry and frustrated with someone when they do this does not help, what they really need is compassion. Telling someone they should teach their child how to behave is probably the worst thing you can do.
9. Some people prefer to be talked of as ‘having autism.’ Some prefer to be described as ‘autistic.’
You should always defer to their choice of language. If in doubt call someone by their name, I’ve found this to always be the best!
10. Autism isn’t just for boys!
Girls are autistic too. Girls on the spectrum will often present differently than boys do, which has led to many going undiagnosed, or receiving a late diagnosis as they get older. Luckily, the world seems to be catching up, and this is slowly beginning to change.
11. If you’ve met one person with autism, you’ve met one person with autism.
What might apply to that person you already know, might be the complete opposite for somebody else. Just like the rest of the world, every autistic person is unique and should be treated that way
12. Many people with autism have problems sleeping.
Trust me I know. Often it is due to a problem with the production of the sleep hormone melatonin. Bedtime routines that work for neurotypical children don’t always work. Sleep is so, so important for both the child and the parent, finding a way to make things better is crucial.
13. Stimming is ok.
Stimming means self-stimulation, and is used to describe behaviours that someone with autism may display at times, such as flapping, bouncing, rocking back and forth. Don’t try and force someone to stop their ‘stims.’ They help to provide extra input, or block out sensory input when the world is overwhelming. It can be soothing, and allow a person to self-regulate, and find their place in the world. It might not be behaviour that you think is normal, but it’s important for the person who is stimming. Embrace the ‘stim’
14. Making friends can be difficult for someone who is autistic.
Social interactions can be difficult for autistic adults and children alike. Different behaviours and interests can mean that a child or adult with autism can easily be excluded. It doesn’t always mean they want to be alone. Be nice, be understanding. Try to teach your children to be the same. Having a friend can make such a difference.
15. Not all people with autism are able to speak.
Roughly 25% of those diagnosed may never talk. This doesn’t mean that they don’t have a voice and it certainly doesn’t mean their world is a quiet one. You should never assume incompetence due to a lack of words. They are able to listen and understand more than you know, so please talk to them too. Just because somebody doesn’t speak, it doesn’t mean they cannon understand what you say. Love needs no words. Finding a way to communicate with someone without using verbal language can be the most beautiful thing you’ll ever do.
16. Autism can mean at times the world is overwhelming to a person’s senses.
Sights, sounds, touch, smells, that you might feel are normal can all be too much. The processing of these senses can be very different to you or I. This can trigger meltdowns when out in public places. Try and be aware, and rather than staring see if you can help. This video will help you understand a bit more
17. Not all therapies work for everyone
There are hundreds, if not thousands of different therapies out there for someone with autism. What works for one person, doesn’t always work for another. Whilst a pet might calm and soothe one person, for another it might be petrifying. A gluten-free diet might work for someone, but not for somebody else. If it hasn’t sunk in yet I’ll say it again. Everybody is different.
18. Routine is important for someone with autism
Knowing what’s coming next can relieve any anxiety they are feeling. However, the ability to be flexible is important too. Trying to find the right balance is the key.
19. Autism is nobody’s fault.
It’s not due to bad parenting, something that you did during pregnancy, or something that happened after they were born. If you’re a parent stop beating yourself up and wasting any more time feeling guilty. Stop worrying about the cause, and focus on what difference you can make to someone with autism’s life now.
20.People with autism want just what everyone else wants.
Love and acceptance
Hopefully after reading this you’re a little more autism aware. What autistic people and their families need is much more than just awareness. Greater acceptance, inclusion and understanding for everyone on the spectrum is what we need. Now it’s up to us to make a real difference, and lasting change by pushing for exactly that.
Happy World Autism Awareness Day!