Autism is not a line – when labels are a barrier.

Me and Biggest by a river - A spectrum is not a line

My son said his first word at just over one. It was car. Others followed – by age two he spoke in sentences and followed instructions easily. He was behind physically. He rolled and crawled and walked late, but not enough to warrant concern.

It was only later, only when the physical delays became more pronounced, when his speech became increasingly idiosyncratic, full of repetitions and the need for control, when his thoughts developed enough to be rigid, immovable– only then did we begin to realise that he was different to other little boys.

There are dozens of reports from dozens of agencies that relate to my son. There are labels, written on the page, that that record his disability, his diagnosis, that describe part of who he is.

HFA. Social and communication difficulties. ASD. Asperger’s Syndrome.

But most of these labels do not do much for the way others perceive my son. He has no speech delay but he has other pronounced physical delays, language issues and sensory processing difficulties, which mean Asperger’s does not fit. His behavioural and physical problems are more pronounced than is common with that description. Indeed, many professionals no longer use it because that is true for so many.

Cognitively, he seems to be around average – but it is so hard to tell because he will not engage in tasks like his peers and has a spectacular memory, which makes it easy for him to mask a lack of understanding. Whether he can attend mainstream school, whether he will lead an independent life – we do not know. But to describe him as functioning highly would be a great misnomer. He struggles with almost every aspect of daily life.

His disability is not hidden. Not one bit. Maybe, if you glimpse him for a moment, it would go unnoticed. Maybe, captured in a photograph, you cannot see it. But for anything more than a split second, it is clear to see he is different:

But his charm and wonder are just as visible.

Autistic Spectrum Disorder. Do you know what a spectrum is? Do you imagine a line, with a certain kind of autistic person at one end, and another at the other? Have you heard someone say that we are all on the spectrum but it is just a case of where? You probably have.

But that reasoning totally undermines what the spectrum is.

Autism is not a line. It is not a gradient with those who are productive members of society at one end, and those who are not at the other. It is not a scale with the Einsteins and Grandins and Gates and Coopers of this world at the top, and those who do not speak, those who are shut off, at the bottom.

It is an ever changing, multi-coloured filter through which some see the world. It is a complex array of strengths and weaknesses, infinite variations interacting with infinite personalities. Of course, there are traits that unite, there are the things that make autism… well, autism. But the complexity and variation of autism is something that wider society still hasn’t grasped. The stereotypes are still pervasive because it is so hard to convey that complexity accurately – unless you are living it.

Last night, I sobbed into my pillow, worrying about what my boy will be. Even a diagnosis is not a diagnosis. Those labels mean nothing. They do not show me his future. I do not know how severely his life, or his happiness may be affected. My husband sought to comfort me, as we whispered in the darkness, trying not to wake the children.

“What he will be doesn’t matter. Whether he stays with us forever, whether he will thrive at school, take GCSEs, leave home, or none of those – our only job is to make him happy. To make sure he is the happiest E that he can be. That is all we can do. Happiness is the only thing anyone can hope for.”

And of course, he is right. I cried a little more, suppressing my own selfishness, trying to push away my fears for his future. The hardest part is always the not knowing. But then I smiled, remembering how charming he is, how I love every inch of him, knowing that the only labels I need for him are his name, and the words ‘my son’.

But the world does not see him as clearly as we do. The labels of autism can be a barrier to understanding but we cannot do without labels at all.

I do not know if there is a solution. What do you think?

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8 thoughts on “Autism is not a line – when labels are a barrier.

  1. With you to guide, love & support him, your little guy can do or be whatever he wants. It’s true that society has a long way to go still as far as fully supporting autistic folks, but I do believe we’re making some progress. It’s people like you and actually autistic folks, sharing their experiences that help society learn what life on the ASD Spectrum is really like. Thank you! ❤

  2. Personally I think knowing and sharing the diagnosis of autism helps in some small way, but you are right that they are all individuals and to truly help either we need to share much more detail (or videos like this) or we need everyone else to take the time to get to know our children. Both, ideally. It’s all about education and I know you know loads about that 🙂 We stopped thinking about the long term future a long time ago, for either of our children. No point worrying over things which may not happen. Love the video, he is a cutie, and actually great attention and I’m amazed he wasn’t completely confused by your abstract suggestion of the polar bear – he took that well and went with it! As you say, everyone is different xx

  3. Thank you for your great post, it’s great to read other people who is in the same position as us, although my son is older we still worry about the same things. As a little lad my son was beyond his age with speech and shined but he didn’t walk until he was 3 1/2 as he had hypermobility, and through encouragement and lots of work he walked. Then he was diagnosed with dyspraxia and then shortly after autism. We have battled for years to get him any help. It was like a gradual light in his eyes that wasn’t shining so brightly. His anxieties are so great he doesn’t even get out the house most days so he has to be home schooled, even though it was the very last thing we wanted but he was suffering so badly. He is kind, caring loving and smart but also scared of the world. We worry constantly for him but all we can do is guide him the best we can and show him unconditional love, even when we have reassured him till we are blue in the face that no germ will hurt him, or when after an hour of trying to line his shoes up he still thinks they are not straight and he gets so upset, all he wants is to know we are there for him and I hope any prey every day we are doing our best for him.

  4. I remember those early days so very well. The worry, the waist ifs, the what do I do for the best. No one knows what the future holds, and still at nine we have days when I’m overwhelmed with worry. What I can say though is that so many of the things I worried about in the beginning haven’t come true. Number One has surpassed all of my expectations. Sending love and hope from a mummy who has been there. #SpectrumSunday

  5. I hate labels unless there is a medical need, as a SEN teacher I’d say every single child/adult I’ve ever met with ADSD, Aspergers, Autism has been been very different and a ‘one method’ approach doesn’t work, just as main stream school differentiates for the different learning styles of its students then each child with a disability will have a variety of learning styles also.

  6. Some days I feel it doesn’t matter and other days I am overwhelmed thinking about the future. The future as a young adult and further along. A future without me at some point. I honestly don’t know the answers and try not to look too far ahead. #SpectrumSunday

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