Be an ally, not an advocate

May 24, 2019

Augmentative and alternative communication methods which replace speech or writing has given Sophia a voice, says her mother Rebekah Corlett

MY DAUGHTER Sophia, who is 10 and autistic, uses verbal communication sparingly, and is learning to use an augmentative and alternative communication (AAC) device.

I do not speak for Sophia. I am not her voice, she has her own. I am her ally, not her advocate.

Seek out, listen to and amplify the voices of autistic people where possible – over parents, and over people who refer to themselves as experts.

Our journey starts in 2011 when Sophia was diagnosed with autism shortly before she turned 3. She was our first born so my husband and I initially hung on the words of the experts who told us she would eventually talk. I don’t ever remember being particularly fearful that she wouldn’t talk as she was perfectly good at making her own needs known. People who know and love Sophia know she is strong willed, mischievous and clever in all the best ways.

Our interaction with speech language therapists in early childhood education was problematic – we experienced a succession of therapists who worked with Sophia for a few months before leaving for new jobs – which meant breaks in between, and then having to build a rapport with the new person and effectively going back to square one.

Years 1-3 at school focussed on low tech communication options. Sophia started requesting favourite items like apples, toys and iPad via core boards and pecs cards at school and home.  At age 8 our school speech and language therapist applied for funding for an AAC device through The Talklink Trust.

We waited 18 months to reach the top of the list for an assessment. It felt a very cruel, drawn out process – but one thing I can say for sure about being on this journey is you get used to sitting on waiting lists.

We had a six-week trial of different talkers and apps to decide which suited her communication needs best, settling on an iPad mini with TouchChat communication app.

The impact was instant. Sophia was calmer as she was able to request items independently. She didn’t have to rely on me to guess what she wanted or how she was feeling. Sophia branched out from requesting just her favourite items – and used a bit of creative flair in the process. With no assigned visual for hot chocolate, she came to me one day asking for a ‘Hot Coffee Chocolate Milk.’

Sophia Corlett

Sophia was able to choose between two activities which had previously been chosen for her – park or beach, walk or bike.

Sophia was able to describe her pain when she fell of her trike and broke her wrist. She was able to express her feelings of anxiety and frustration in many doctors’ visits over a six-week period and was remarkably calmer as a result.

Which is my main point. AAC gives Sophia a voice. It gives her independence of thought and action. So, we need not put words in her mouth or talk on her behalf any longer.

As a community we need to recognise AAC as an official form of communication. This will take education, understanding and funding.

Our government needs to better fund AAC – not because it’s a nice thing to do – because it’s a fundamental human right to communicate. Because the UN Convention on the Rights of Persons with Disabilities as well as Convention on the Rights of the Child state it in plain English.

And at a time in our country when we are being encouraged to acknowledge diversity in our communities, I ask you to celebrate neurodiversity in the same way we celebrate diversity in race, gender and faith.

Make AAC affordable and accessible to all wherever they are on their journey with autism. The earlier the better.

When you go out into your communities, especially into schools. Don’t just praise the high achievers. Search out the students with neurodiverse needs and ask how the education system is treating them.

Be an ally, not an advocate for autistic people. Amplify the voices of autistic people. Because it’s time to pass the mic and turn up the volume.

  • Rebekah Corlett is a parent, occasional blogger and most importantly Sophia’s ally.
  • Rebekah spoke at a parliamentary breakfast hosted by Autism New Zealand and Hon Carmel Sepuloni, Minister for Disability Issues for World Autism Day, which this year focussed on Assistive Technology, Active Participation.
  • Augmentative and alternative communication (AAC) is an umbrella term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language.
  • This article first appeared in the Altogether Autism Journal, Issue 1, 2019


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