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20 Things This Dad Wants You to Know for Autism Awareness Month

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It’s Autism Awareness Month!

Social media is full of people lighting it up blue, posting multi-colored memes, having tattoos or taking part in fundraisers.

This is all great, I’m a big supporter. Awareness is a fantastic start, but this needs to be the 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’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. The year before, my first son Jude was born, 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 our everyday life. It became our normal.

To celebrate Autism Awareness Month, here are 20 things I’ve learned about autism over the last few years that I think are important. They’re all from my point of view as a parent of two children on the autism spectrum. They include what I have learned from them and what I have learned from others in the autism community on our journey.

1. Autism can affect 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. While a lot of people 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 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 “invisible.” There is not a certain look. Telling someone “Oh you don’t look autistic” is not a compliment.

4. Autism can affect how a person is able to make sense of the world around them. This confusion can cause anxiety and behaviors 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 math?”

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.

son with hat that says love

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 I’ve found it to be much better), so try to realize everybody’s story is different.

8. Somebody having a meltdown is not the same as someone misbehaving. 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 behaviors. 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. Try to see the person for who they are. People with autism are individuals who should be treated accordingly.

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.

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 behaviors 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 behavior 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.  Different behaviors and interests can mean a child or adult with autism can easily be excluded. Be nice, be understanding. Try to teach your children to be the same. Making a friend can make such a difference.

15. Not all people with autism are able to speak. This doesn’t mean 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. 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 for each person. This can trigger meltdowns when out in public places. Try and be aware, and rather than staring, see if you can help.

17. Not all therapies work for the same people. 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. While 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 often 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 you did during pregnancy or something that happened after they were born. I would suggest to stop worrying about the cause, and focus on how you can help someone you love face with their challenges.

20. Everyone, autistic or not, wants love an acceptance.

Happy Autism Awareness Month! Now let’s work on greater acceptance and understanding.

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Originally published: April 20, 2016
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