Encouraging and developing self-advocacy in our children and why the language we use matters

Image shows the sea in the background, with a close up seagull to the right with its beak wide open, below the beak and centred on the image white text reads 'How to talk so kids will learn how to speak up for themselves'

I really, really, really, don’t like the term ‘special needs’. I don’t particularly like the term ‘special educational needs’ much either, and can get a bit twitchy when the acronyms are used as prefixes, for example ‘SN child’ or ‘SEN child’. Urgh, it’s the ‘special’ bit I think. Scotland uses ‘additional support needs’ which grates less, and additional feels more neutral than special, but ASN is phonetically a bit too close to the old ESN acronym for ‘educationally sub-normal’, which was particularly awful.

‘Special needs’ is often used as a way to avoid using the words disabled and disability when describing, err, disabled children. Referring to adults as having, or being (WTF), ‘special needs’ seems reserved for those with learning/intellectual disabilities, when it’s typically used to pity and infantilise. The way that ‘special’ has become used as a way to insult and demean suggests to me it’s time for a re-think.

I’m aware that ‘special needs’ and ‘special educational needs’ are also used to describe children who aren’t disabled. It’s probably helpful to have an umbrella term for both transient and enduring support needs, particularly in schools. I think my preference would simply be ‘additional needs’ and/or ‘additional educational needs’. Both seem more accurate and less loaded and possibly harder to corrupt into terms of abuse. Maybe.

But, what bothers me most is that the language we use to describe disabled children, and to explain disability and support to disabled children, can make developing self-awareness and self-advocacy harder. I know that not all disabled children will be able to advocate for themselves, but for those that will, or those who might, I have some suggestions:

Use words that they’ll use as adults

Think about the words that adult services and adult self-advocates use. My son was diagnosed with Asperger Syndrome when he was 6 years old, but we’ve interchangeably used Aspergers, autism, autistic and autism spectrum/autistic spectrum. I’d like to say this was a brilliant bit of forward-thinking, but it wasn’t, it was purely accidental and largely resulted from my own dithering around the person-first language I’d been trained in and the identity-first language that felt more personal and powerful. Alongside using the word disabled, and other terms that are specific to what disables him, he’s developed a broad and varied vocabulary, not just to choose for himself, but so that he isn’t stymied when he encounters someone who uses different terms.

My hope is that as he approaches adulthood he is reasonably well-equipped to engage with both professionals/service providers and with other autistic and disabled advocates and activists. This would be so much harder if he’d only heard us describe him as ‘being special’, having ‘special needs’ or if, like some parents, we’d never even told him his diagnosis.

Don’t minimise or rely on cutesy words

Words like autism and disability continue to scare some parents. It’s understandable given that the discourse of child development uses words and phrases like ‘risk’ and ‘red flag’ (and delay, disorder and failure) to describe and highlight anomalies (I view anomalies as a neutral term, different not less and all that). Parents, teachers and clinicians often skirt around language, avoiding those apparently scary words, and try to use what’s seen as more child-friendly language to describe children. For example (and this is not exhaustive!):

Aspie

Autie

Fidgety

Shy

Special

Highly sensitive

Indigo child

Twice exceptional

Sensitive

Quirky

Different

Fussy

Spectrummy

Wriggly

Slow

It’s not that we should never use these words, I just think they shouldn’t be the only words we use. It’s a bit like teaching children anatomical terms for their bodies, we need to provide children with the correct terms to describe themselves as well as their bodies.

(Also, try to avoid using words which suggest naughtiness or nastiness, even if you think they can’t hear or understand you)

Model advocacy

Try not to hide what you do to advocate for your child from your child. As far as is possible, involve and explain what you are doing and why, especially as your child gets older. Whether it’s sending an email to school, making an application for extra support, asking for help, or filling in a disability benefit claim, talk about it and involve your child, as one day they might or will need to do these things for themselves. Involving and engaging children in their support and reviews not only reminds professionals that there’s a real child involved, it also gives our children a chance to be a part of the process and learn new and useful skills.

If you are autistic/disabled yourself, or have any support needs, talk to your child about it. I am guilty of unintentionally hiding how hard some things are for me, but I’m trying to be more open and honest about what supports I’ve had that have helped me live, work and study better.

Encourage challenge

Don’t be a doormat, show your child that you will stand up for yours and theirs and other peoples rights. If they spot an injustice help them address it, write an email together or go and complain. Discuss what’s going on in the world and explore the sorts of things ordinary people have done and can do to make a difference.

Don’t force compliance

This is probably my biggest worry with many of the interventions used for autistic children. Whether it’s ABA or social stories or emotional literacy, or whatever school and professionals are offering, we need to check and double check that our children aren’t being taught or conditioned to ignore their own discomfort. Teaching and supporting self-advocacy and autonomy, and especially bodily autonomy, is vital. For more on autonomy, see this post.

Final words

The words we use to describe our children become the words they use to describe themselves. These words and the language we give our children to describe themselves matter. Hopefully, our children will be adults for far longer than they will have been children, so getting the foundations right, giving our children words and language and skills which empower them, which make them feel good about themselves, perhaps which enable them to find their community, and which help them self-advocate, matters.