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KAREN ANDERSON: Who Cares? column – Be careful before landing someone with a label

By Hector MacKenzie

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Labelling other people is a bad habit.

It smacks of the kind of judgment obvious on social media, with all the negativity that can bring. However, if you are caring for someone, labels take on a multi-layered level of importance.

Many people even try to actively discourage the attribution of a label to themselves or their loved ones because of negative associations, a desire not to be seen as different, or denial of the presence of anything that could give rise to that label.

We first realised that our boy was developing in a non-typical way when he was around 18 months old, and started a quest to obtain a label for him so that we could understand him more and obtain the support he desperately needed to thrive in nursery and then school.

His label is autism but that was not straight-forward. The NHS referred to him as ‘having high-functioning autism’ which sounded impersonal to us and although he does ‘function highly’ in academic achievement and many other areas, some parts of his life are very severely impacted. It can also lead to unfair and unreasonable expectations from people who don’t know him well and that can be distressing for him.


Then there was the conscious decision a few years ago after I had made friends with some autistic adults to change from saying he ‘had autism’ to saying he ‘is autistic’. This may seem subtle, but it is significant to autistic people – they do not ‘have autism’ in the way someone might have a cold or have cancer, autism is intrinsically part of every aspect of their lives and informs actions, thoughts, hopes and desires and how they approach anything and anyone they encounter.

By the way, I am likely to verbally skewer anyone who dares to say that our boy or any other autistic person ‘suffers from autism’! Don’t say it near me or ever! The only thing autistic people suffer from is neuro-typical people who make no effort to educate themselves about autism and make the small adjustments necessary.

One label that has always been difficult for our boy is ‘disabled’. This one only comes out when we are dealing with officialdom as it is frankly depressing for him. So, we generally only say that as shorthand when we don’t want to have to go through educating someone about autism, and on forms like the census.

Why am I thinking about labels just now? Well, the boy turns 20 next month and I can’t say in the footer to my column that I am mum to a teenager anymore – I may never recover from the shock! But I use that to show other carers what stage we are at – through the baby and toddler bit, not quite on the adult bit yet. I am veering towards ‘young adult’ but may settle on ‘in his 20s’ which will buy me 10 years before I must change it again. As they say on the radio – tune in next time to find out!

Karen is Mum to an autistic teenager and campaigns for the rights of unpaid carers to be supported in their caring role and involved in the decisions that affect their lives and the lives of the people they care for.

You can find her on Twitter @Karen4Carers.

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