In this blog post, we are sharing one family's experience of supporting a non-speaking autistic child and learning about communication in new ways.

We know that every autistic person, every family, and every communication journey is different. There is no single experience that represents everyone. We hope this story offers reflection, connection, and encouragement, whether it feels similar to your own experiences or very different from them.

by Jade Page

Over the past decade, I have been fascinated by how differently my two boys and nieces have developed communication and speech. 

The majority of children simply pick up language and start talking. When you have children who don’t speak, have a speech delay or communicate differently, it opens up a whole different world. Unfortunately, this tends to come with judgment, isolation and limited understanding. 

Non-speaking does not mean quiet or nothing to say

I have two autistic boys with communication differences. My 10-year-old uses verbal language. It is mostly echolalic speech, which is the repetition of words or phrases that are now mostly in context. My 12-year-old is non-speaking or pre-verbal, depending on your preference for labels. Over the years, he has picked up a few words that he can say – yes / no and numbers. However, anyone who doesn’t know him would struggle to understand - apart from ‘yes’, which will be his response to any question (his brother always gives the opposite response).

In all honesty, it took me a long time to be comfortable with him not speaking; a large part of that is how the world responds, or should I say ignores, people who don’t use verbal speech.

I have learnt far more valuable lessons from him than I had learnt in the previous 30 years. One of the most important was learning just how little speech is needed when we communicate, but you do need to learn to listen differently.

Becoming Isolated 

One of the hardest things for any parent to do is to voice concerns and ask for help. Which is why it is particularly damaging that concerns once shared are so often dismissed or diminished by others. I noticed my son was different fairly early, but I struggled to express how and what was different. 

The support network around you seems to rapidly shrink. Partners, parents, and friends all seem to say or do the opposite of what you need. You just want help but end up with lots of doubt. You might get responses like ‘boys are always delayed’, ‘he will catch up’ or ‘you're worrying about nothing’. I now understand that they didn’t see what I was seeing yet, but it still hurt feeling so alone with my concerns. Having to push professionals to take concerns seriously just made a difficult journey harder.

I still get silly questions like ‘when will he speak?’, but I can brush them off in a way now that I really couldn’t previously. It is incredibly isolating when your child has additional needs and even within SEND and the autism world, you can feel further isolated with a non-speaking child. 

Supporting a child with communication differences

So many people will have opinions on the approach you should take (yes, I’m also guilty of this). It is so important to understand that every child is unique and therefore requires an individual approach. The more complex your child's needs are, the more important it is to trust your instincts. I would often take advice from well-meaning friends, family or professionals and later regret not trusting my instincts. After trying pretty much every technique, device, and approach, we have settled on the total communication approach.

Alternative communication

Alternative Augmentative Communication or AAC is any method of communication used instead of or in addition to speech. This can be high-tech or assistive devices as well as low-tech methods, such as gestures, visuals and text. Many speech therapists or AAC users have preferences and suggestions based on what works for them. I learnt a lot about communication from all of these approaches. For us, a combination of all of these has helped on our communication journey. They all helped us to better communicate with each other and supported my son in developing his comprehension. 

Total communication approach

The total communication approach values all methods of communication; it values pointing, facial expressions, visuals or assistive tech equally. I wish this was understood and respected by everyone. 

When my son comes and stands next to me, looking longingly at my chocolate biscuit, I know he wants one! He also knows I know it! So I respect that communication, and we use a mix of intuition, body language, eye gaze, visuals, pointing and providing processing time.

The total communication approach and focusing on communication above speech has worked so much better for us. 

Visual Aids

I am a huge fan of visual aids; I really believe everyone benefits from visuals. A visual aid is anything that shows something visually even written text. So often, we rely on telling people things, when showing or writing it down makes so much difference. 

I wish I had understood visual tools in more depth early on. So often we would be told to use social stories, visual aids or schedules. What was lacking was being shown how to use them properly. It is really easy to avoid simple mistakes when you understand the purpose. So often social stories get pulled out after a child is dysregulated, but if they had been given it earlier, we may have avoided the distress. 

‘He will read before he speaks’

I was working with a speech therapist when my son was around five years old, and she was wonderful with him and clearly had experience with similar children. She understood him so well, saying, "he will read well before he can speak." And how right she was, he can read and is now starting to type (this is still developing, but he can certainly find what he wants using YouTube).

Until this point, I was still a little caught up on which developmental milestones he had met, what he was supposed to be able to do at his age. I appreciate these systems are in place as they work well for many children, but when your child is different, it's so unhelpful. I am very grateful to those who have been able to remind me that my kids have their very own developmental pathway, and the best thing we can do is make no assumptions about what they can or can’t do. 

Everyone who is waiting for him to speak is missing out on the most wonderful boy who loves building LEGO sets and playing games with people. He just needs you to encourage him to join and let him know you want to include him. My niece is brilliant at this, always assumes competence and pulls him along for the next activity. He loves it, she is guiding him, but more importantly, including him because she enjoys his company. 

It breaks my heart how many people dismiss him due to lack of speech; people talk about him rather than to him when he is right in front of them. I understand it is hard to know how to communicate with him, and that when someone doesn’t respond it can feel odd to talk to them, but at the very least say "hello".

I spent so much of my life focused on people’s words and missed so much more in terms of communication. We communicate so much in our actions, body language, feelings and emotions. The best thing we ever did was reduce pressure to speak and learn to communicate differently together. 

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Thank you to the families and individuals who continue to share their experiences and help us build greater understanding of neurodivergent communication in all its forms.