Blog

When I was pregnant with my daughter, I thought I knew what I was in for. I had two autistic boys already, and I’m autistic too, so it seemed like it would be same old, same old. I expected speech delay, missed milestones, but an inevitable “everything will come around right” in the end. 

Turns out, I was wrong. 

My daughter E is level 2 autistic and non-verbal. This doesn’t mean she can’t talk at all – it just means that instead of words, she uses hand guiding, and says “ee” a lot. She can say a few words like “daddy” and “wow”, but she’s 3 years old, so this isn’t the level she should be at. While it’s not a worry for me (I think talking’s overrated), it does cause concern for her teachers, especially as we live in Spain; learning two languages when you can’t talk is a monumental feat!

E is a very happy child – she plays with her brothers, watches videos on her tablet, and plays on her trampoline as well as running laps around the dining room table. If she’s not a marathon runner when she grows up, I’ll be amazed! 

The difficulty comes when she’s upset. Trying to gauge what has upset her, how to fix it, and navigating discipline are three of the hardest things about having a non-verbal child. When she’s in pain, unless we can see where her injury is, we won’t know what’s happened. It’s the same if she’s angry – unless it’s obvious, i.e. her tablet’s run out of battery or the Internet’s gone down – we spend a good amount of time trying to work out what’s wrong. Even with hand guiding, sometimes it feels like trying to find a needle in a stack of needles!

Now, I won’t lie to you – non-verbal autism is hard. Some days, it’s beyond hard. I’ve spent countless nights on my knees praying to any deity that will listen, begging them to help her say something – anything – just so that I know there’s a chance of her being able to communicate. We have tried to teach her sign language, but the combination of suspected ADHD, plus trying to teach her Spanish Sign Language and British Sign Language, is a hill I’m not really willing to die on just yet.

What frustrates me the most is the fact that I know the ability’s in there – she’s shown that by being able to sing nursery rhymes, by being able to say single words – but trying to get it out of her is a process I wasn’t prepared for. Even though my boys were speech-delayed, both of them were saying a lot more than she is when they were her age. Everyone keeps saying “trust the process” and “she’ll talk when she wants to” … but what if she never does? What if, even as an adult, she just … doesn’t talk? How am I meant to help her then? And what about when I’m gone? It’s an awful thing to be thinking about, but it’s what parents of children with autism sometimes have to think about.

I know there’s every likelihood that she will talk, and I try to put my faith in God and the amazing therapists who are working with her, but most days I sit in a kind of quiet resignation. I’ve resigned myself to the idea that my daughter will not talk because the other option is not to prepare, and risk being devastated later.

On the flip side – because it’s not all doom and gloom – we are extremely lucky with the Spanish education and healthcare system, because they have been instrumental in helping E. She has speech therapy once a week for 1.5 hours with two dedicated speech therapists, who I absolutely adore, and her teacher has been an absolute Godsend in trying to learn about her, her needs, and how to help her. Not many teachers call a meeting before term starts to sit down for over an hour to talk about your child’s needs! Honestly, I can’t thank them enough.

The thing to take away from this, though, is one simple truth. Yes, having a non-verbal child can be incredibly difficult. I’m not going to pretend it isn’t. However, E is a very happy little girl with an infectious giggle, a complete daredevil, utterly fearless, and extremely intelligent. All of that shines through without her speech, so I can only imagine what she’ll be like if she does talk! She’s also a very affectionate and resourceful child; hand guiding in place of speech, cuddles when she senses you’re unwell or sad, and she is so willing to learn that it makes my heart swell with pride. 

Every step, however small, is a step closer to E functioning in a world that wasn’t built for her. 

Nicola was born in 1991 on the south coast of England, and diagnosed with autism in 2012 (when it was still called Asperger’s Syndrome). She later received a diagnosis of combined ADHD in 2022. Nicola has 3 children, all of whom are on the spectrum – two level 1 autistic and ADHD boys and a level 2 autistic and suspected ADHD girl – and is married to a man with ADHD. 

Outside of her personal experience, Nicola worked for 7 years in the healthcare sector, both NHS and private, with a variety of learning disabilities at varying levels. This included autism, ADHD, dyslexia, dyspraxia, and other mental health issues such as alcohol-induced dementia, schizophrenia, and more. She has also spent the last 13 years educating herself as much as possible on autism so that she can better support her children. 

Nicola lives in Andalucía, where she moved in 2023.