Monday, October 19, 2015

Autism Educational Series—6 Things I Want You To Know about Non-Verbal Autism—"Stories About Autism"

James is a dad of 2 boys, Jude and Tommy, who are both autistic. Originally from London, they now live in a little place called Burnham-on-Crouch, in the UK.
Recently he's decided to use all the extra time he gets during those sleepless nights to write a blog about his family's life called Stories About Autism, talking about the rollercoaster they find themselves on.
If you like his post you can also find him on Facebook, Twitter, and Instagram, where he'd love you to come and say hello! He also had an article published recently on The Mighty.

6 Things I want you to know about Non-Verbal Autism
I’m a proud dad to my two boys, Jude (7) and Tommy (4). I had huge and wonderful plans for what our lives would be like, what being a dad would be like, and the sorts of things that we’d do together.
So far, I’ve not so much had to adapt those plans; instead, to rip them up and start all over again.
Jude and tommy are autistic, having both been diagnosed at 18 months old. It’s a word and a world I knew next to nothing about back then.
The last 6 years have been an eye opener to say the least, as I’ve desperately tried to learn as much as I can about autism to help them have better lives. They have sensory issues to deal with, anxiety, sleep problems, and self-harming issues.  But the one thing that makes all of this more challenging is their communication problems. You see, they are both currently non-verbal. I never once thought that 7 years down the line I still would not have had a two-way conversation with them, or even that I’d never have heard them say 'Dad.' So trying to find a way to understand what they want and how they feel is everything to us, and a daily battle.
Most people who I meet who know little about my boys seem to be shocked by that fact. I explain that they are autistic, but when they discover they are non-verbal too, it takes them aback.  So here’s 6 things I want you to know about non-verbal autism:
1) Non-verbal is not that rare.
Let’s be honest, it’s not the autism most of the world is familiar with. It’s not the Rain Man, slightly strange, gifted type of autism people expect. Instead, it’s the less media-friendly, extremely difficult, severe end of the spectrum that people know very little about.  Yet latest research suggests being non-verbal applies to nearly 25% of people who are on the autism spectrum.
2) Being non-verbal is really challenging.
Think about it for a second.
Imagine being 7 years old, and wanting to tell someone that you really need a drink. You can’t say it out loud; the sounds you make don’t seem to be understood. You can’t write it down, holding a pen is too much of a commitment, let alone trying to make a mark on a page. Every other communication method your parents have tried so far just doesn’t seem to make sense. All you feel able to do is lead somebody by the hand and thrust them towards the area where you think there might be a drink. Maybe if I push them towards the tap they’ll understand, but even that can feel overwhelming sometimes.
If everything you ever wanted or needed during a day could only be achieved with all of this effort it’s likely you’d start to feel frustrated. Frustrated with yourself that you’re unable to find an easier way to be understood. Frustrated with your mum and dad who just can’t get it right first time, every time, frustrated that at times the world seems so confusing. When you have to battle with this frustration day-in-day-out it makes being non-verbal extremely challenging
3) Non-verbal doesn’t mean silent.
Just because Jude and Tommy can’t speak right now doesn’t mean my house is silent.  Far from it; in fact, they probably make more noise than kids who do speak.
Jude and Tommy both vocalise continuously, whether they’re with people or on their own. Their sounds are mainly ways of expressing their emotions, and can be purely for their own enjoyment.  If they’re having fun they’re loud and let the world know about it. If they’re feeling upset or anxious, they’re twice as loud!
4) Non-verbal doesn’t mean they don’t understand you.
It can be easy to assume that because someone is non-verbal that their understanding of language is limited too. Wrong!
My boys constantly surprise me with how much they understand on a daily basis. Just because they can’t say the word doesn’t mean they don’t understand what it means. As long as you keep your language simple and clear there’s a good chance they will know what you are telling them. Whether they want to respond or comply with what you say to them is another problem all together!
5) Communication is so much more than verbal.
Spoken language is only one part of how we communicate together.
Body language, tone, and expression are all just as important. So whilst Jude and Tommy may be lacking in the verbal department, we are able to communicate in so many more ways. They are really able to sense a person’s feelings towards them without the need for words to be spoken. If you spend time in their company, be relaxed, be accepting, and be non-judgmental. They can feel it, and they will want to interact with you when you are giving off these vibes.
You don’t need to talk to them to show how you feel, your body language and expressions are more than enough for them.
6) Non-verbal doesn’t mean it’s permanent.
I’ll never give up the dream that one day I’ll be able to have a conversation with my boys. Right now we’re a fair way behind, but we’re not working to the same timescale as the rest of the world. There’s no rush here. There are hundreds, thousands of stories of people developing language on the autism spectrum, at all different ages of childhood, and adulthood. Whilst we work on finding other ways to help them communicate apart from speech, so that their world will open up even more, I’ll never give up on the dream that one day they will have some spoken language, and we will have a conversation together.
Just because they’re unable to speak today doesn’t mean they won’t speak tomorrow.


    1. James - I love your post, particularly #6! Sounds like you have an extraordinary bond and understanding of your son's needs. I love when parents authentically speak about what life is like and believing what is possible for their children. Thank you for your wonderful contribution!

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