More Than Words

Today is the European day of Speech and Language Therapy. Each year it has a different theme and for this year, it is Autism Spectrum Disorder (ASD). So, I thought it would be fitting to use today to share with you our story and journey (so far), and to spread some light on what it means to have a child with Autism who requires significant support with developing speech and language skills.

So many of us, as parents, take for granted our child’s spoken language. We take for granted their ability to express their needs, tell us what hurts so that we can fix it, and tell us that they love us. But what is it like when a child to be unable to do those things?

During my daughter’s first year, she was a happy, hugely sociable, chatty little lady. She would blow kisses to anyone who walked past, her first word was mama, and she could name all the animal noises! I remember the Health Visitor’s words as my daughter toddled out of her check-up, waving and saying bye – “you’ll have no problems with her!” she said.

However, shortly after her 1st birthday, my daughter’s development started to regress. She eventually lost all her spoken words, began to turn into herself (not responding to us / playing with us) and rarely giving eye contact. I remember so clearly as one by one we lost all the games and interactions we used to have with her. Things that other parents take for granted, like singing, reading books, and playing peek a boo. It was so painful to feel like I was losing her like that. To miss her while she was right there front of me.

My daughter received her ASD diagnosis at the age of two. In ASD, regression of this kind, occurs in up to 20% of children1.  The rest may struggle with social skills and speech from birth, while others may develop spoken language in a more typical fashion, and experience other difficulties with social interaction. It is estimated that 25% to 50% of children diagnosed with ASD never develop spoken language beyond a few words.2

For a long time, I personally found this regression difficult to handle. I was desperate to find a way to help her to talk again, and to get her to see me. She was incredibly frustrated, at being unable to communicate her needs, so she would have extreme meltdowns.

It became difficult to engage with her, teach her basic concepts and understand what she needed from us. Simple things like childhood illnesses became a source of extreme anxiety as she couldn’t express what hurt or what she needed.. and as a parent I had to constantly analyse every single sign, symptom and reaction to try and establish what was going on inside.

Thankfully, as parents, we are attuned to what our children want by reading their cues from the moment they are born… and we have always worked hard to try and find ways to read her behaviour. But it is terrifying knowing that I won’t be able to be there for every interaction she has going forward. It makes it difficult to trust other people to take care of her, and can make the simplest of exchanges extremely challenging.

For a long time I pushed, desperate to cling on to the little girl that used to interact with me. But the biggest and most helpful shift occurred when I realised that to move on, I had to accept that my child may never talk again, and to love and appreciate her exactly as she was now. To not put pressure on her to be anyone other than who she is in this very moment. And as soon as I made that realisation, and removed my expectations of her… everything shifted.

We commenced Speech and Language Therapy from the age of 2 and it has been fundamental in helping her to develop and for the two of us to find new ways to connect and communicate with each other. So much pressure, in today’s society, is put on our words. But in fact there are so many different ways to communicate, that we all largely ignore.

One of the most mind-blowing things I learned from our therapists was the speech and language development pyramid (below3).

Pyramid showing skills required for speech and language development

Where, initially, my focus had entirely been on regaining my daughter’s speech, our Speech and Language Therapist showed me how there are so many skills that a child needs to master in order to be able to effectively communicate verbally. These skills are represented as layers in the pyramid.

Each layer of the pyramid supports the higher layers. The first level of the pyramid is attention and listening, a skill my daughter had also regressed in. As this is the bottom layer, it directly impacts all the skills above it! So we knew where we needed to start.

We  found ways to develop this through the use of intensive interaction. This involves getting down and being present with a child and joining them in their world before expecting them to join us in ours. In joining my daughter in her world… rather than pushing and forcing her in to mine, she was suddenly able to really see me… and see that her actions could have an impact on me.

When my daughter started at nursery, intensive interaction was hugely important to me, as having worked so hard on it at home, and seen real progress, I couldn’t bare to think about this progress being hampered due to the lack of interaction she would get in this busy environment. This kind of approach and support can literally be the difference between your child seeing you and connecting with you…and not.

It’s really important, when your child is preverbal (a phrase I much prefer to non- verbal as it implies potential), to be accepting of all communication. That means not asking your child to change, but YOU changing what you understand to be communication. It is about opening your mind and using your eyes instead of your ears to hear. All behaviour is communication. And for a preverbal child, a small gesture, eye contact, even a cry can all be a request. And it is important to be aware and respond to these cues, to encourage your child to communicate further.

I have always loved learning new languages… and it has been eye opening, inspiring and a steep learning curve to find my own way of communicating and learning our own language with my daughter. Not every tool and approach works for every child. She may not have been able to verbally tell me she loves me… but we read each other and I can see it… and it is simply unlike any other connection you can have.

At the age of 5, through continued therapy, my daughter is showing incredible progress in her language, and is now able to say a few sentences, and has developed a huge vocabulary compared to where we were just a year ago. She can express some basic needs, is beginning to comment and actively seeks to learn the words for things. The most beautiful thing of all is to hear her sing. I value and appreciate every single word that comes out of her mouth. Something that is again easy for others to take for granted.

Many children with autism are visual learners, and there are some amazing tools that you can use to help them understand and learn verbal communication. We have benefitted from the use of communication tools such as Gemiini, PECS, Pixon and Makaton. In fact, just last week Erin signed her first Makaton signs (two years since we started!). The key for all children with autism is perseverance. Even if you don’t think it is working, if they aren’t getting it right away, keep going! Because our children are absorbing things even when it doesn’t seem like it!

When I think of what I would ask others to do when communicating with a child with autism, I think about a quote I saw today on social media. It said

“If you want to know how to treat children with special needs… look at their siblings”

The way my youngest child automatically relates to her sister is just beautiful to see. She naturally does intensive interaction (without any training from us). She naturally tries to join her in her world, even if she gets absolutely nothing in return. Communication is defined as a two way process. But my youngest gives and gives just to find a way to connect with her big sister. It really is more about being open to receive whatever they are able to share with you, with no expectation of what that may be.

Lastly, I’d like to share the key things I have learned on our journey in finding new ways to communicate with my daughter….

  • Just because she may not speak does not mean that she does not listen
  • If she doesn’t respond, it doesn’t mean she doesn’t understand
  • She is still aware of what is going on around her, in fact, she is often much more attuned than the rest of us!
  • She deserves to have a voice… even if she is unable to use her own verbally.
  • And she has so much to contribute.

References:

  1. (Bradley C.C. et al. J. Dev. Behav. Pediatr. 37, 451-456 (2016) PubMed)
  2.  Patten, Elena; Ausderau, Karla K; Watson, Linda R; Baranek, Grace T (2013). “Sensory Response Patterns in Nonverbal Children with ASD”. Autism Research and Treatment. 2013: 436286. doi:10.1155/2013/436286PMC 3727194PMID 23956859.
  3. CK Speech Therapy (www.ckspeechtherapy.com)

Comments 2

  1. Beautiful! I love reading about your journey. You’re talking about your specific situation, but the wisdom and insights can apply to all of us!

Leave a Reply

Your email address will not be published.