Curious

:: Blogtober is a blogging challenge whereby bloggers are encouraged to post every day for the month of October. Many of my post topics have been taken from suggestions by friends and family. In general, expect my posts to be shorter, more random and of inconsistent quality! ::

I was travelling on the train with Spike last weekend and we sat opposite three young teenagers, perhaps 13 years old. As always when we travel by train, Spike was delighted to be there. He chatted to me constantly, asking questions and telling me facts about the stations we passed and the lines we travelled along. I love this Spike. Interactive. Engaged. Wanting to share his enthusiasm with me. His joy was palpable, evident in his excited bouncing, his slightly-too-loud voice and his frequent gasps of excitement.

The children opposite were sneaking looks and not quite managing to suppress their nervous giggles. They weren't being purposefully mean. I could see they were trying to be discreet, but couldn't quite help themselves. There was no adult nearby to explain what they were seeing and to shape their response. They were reacting to a perceived strangeness in my son. It made them uncomfortable. 

I felt sad. Spike was, I think/hope, unaware of them. Too wrapped up in his journey that he waits all week for. I was sad because this discomfort is a precursor to fear. It erects barriers between the observer and the observed. Makes him other. Not one of us. Excludes him. I wanted to - was going to say something, but our stop was coming up and my brain decelerated along with the train. What could I have said? I'm still not entirely sure. My urge was to tell them him how brilliant he is, to let them know that his difference is not diminishing. He is not a half-person. In the end, I hugged him, laughed with him and told him how clever he was for knowing so many cool facts about trains. "See? My son is loved and loveable." A simple, "My son is autistic. He knows a lot about trains, doesn't he?!" would have given them a frame of reference which may have prompted a different, better response. It would also have conveyed that they had been observed, and that they should be more mindful of people's feelings. I will do better next time.

In the main, we don't encounter this sort of thing very often. Perhaps it is because we often pre-empt any concerns by letting people know Spike is autistic. We'll explain that they might, for example, need to make sure they have his whole attention before asking a question. I'm struggling to remember another incidence of unkindness (accidental or otherwise) right now. Isn't that wonderful? I do, though, recall the lovely people - the men and women who chose not to judge or fear. I remember the man who thanked Spike for reminding him to get off the train at his stop, and the man who told Spike that TFL would snap him up when he grows up. The numerous people who took the time to say what a lovely, happy boy Spike seemed. The woman that stopped her car and brought me a pillow from her back seat when Spike hurt himself and had a meltdown on the street. The station attendant who calmed Spike and helped keep him safe when he was acutely distressed and unable to hear us through the fog.

When you are young and autistic, unusual behaviours don't stand out as much and are often tolerated or dismissed. As he gets older, I am keenly aware that Spike is more conspicuous and that people's reactions may not always be so lovely. We are, of course, teaching Spike about social expectations, and how to regulate himself in public. But I think it's fair that we have different expectations for him depending on whether we are riding a week day tube, packed with quietly sullen commuters, versus a train filled with lively, lanyarded fans spilled out from Wembley. They were noisier, rowdier but, on that day, Spike still stood out. And I missed an opportunity to make the world better for him.

I do sometimes hesitate to convey Spike's diagnosis to strangers and take a more practical approach, explaining that he might need more time to respond or that he struggles with games that have complicated rules and will do better with a simple game of tag. This is partly because it is more effective and not everyone knows how to make accommodations for someone who is autistic. But it is also because, being less explicit avoids having to run the gamut of responses that the "autism" word provokes... 

Pity

Don't pity my son. If you pity him, you assume he is suffering and unfortunate. He is a happy boy, with deep passions which bring him joy. He is surrounded by people who love him or hold him in deep affection. They are invested in his happiness. If you pity him, you are writing him off. You are implying that his life is a tragedy and that he cannot be successful (which is a subjective, not objective measure). Don't pity us, either. We have two amazing boys, we are privileged, educated people. We are lucky. Spike is well supported in a way thousands of autistic children in this country are not. Nothing about that warrants your pity.

Presumption

Don't assume you know my son, because you "know" autism. My son is not autism. He is Spike! Human beings are are the most wonderfully sophisticated, complex organisms and we should take the time to get to know each other. When you meet a neurotypical person, you may make certain assumptions about them. I think we all know assumptions are a social short cut and to be avoided but, as humans we are more alike than different. Statistics and probability may see your assumptions borne out, more often than not. But you will come unstuck if you assume things about Spike. Not only is it impossible to map a neurotypical worldview onto Spike's, he is inconsistent - consistently so. You cannot even assume that what worked yesterday will work today. Instead, spend time with him, or speak to the people who know him well. Figure him out. Spike's silence does not mean he wants to be alone. His fidgeting and averted gaze does not always mean he is not listening. Some professionals who have worked with us have been guilty of this. To give them the benefit of the doubt, they may have been unable to go any deeper, too hamstrung by budget and caseload to look at what will help Spike, rather than Generic Child with Autism. Unless you are assuming a desire to be loved, heard and included, don't be presumptive, be curious.

Fear

If you fear my son, you make a monster of him. I have encountered adults who are scared of Spike. There are people who have been a part of his daily life, but find themselves too fearful to interact meaningfully with him. I don't blame those children on the train for being unsettled by Spike's idiosyncratic behaviour. I hope someone will teach them about autism. But adults have a responsibility to educate themselves (and their children). Knowledge defeats fear. He is a child. He will be a man. He deserves understanding.

Curiosity

Be curious! This is the best response to hearing about an autism diagnosis. I love it when people are curious about Spike because I have seen, first hand, the difference it makes to him. Children are often naturally curious and parents, fearing social embarrassment, can be too quick to suppress this natural desire to learn. Let them ask questions! Start a conversation yourself, if you can see your child is confused or anxious. Engage. It makes a tremendous difference to Spike if people ask how they can include him, how they can communicate better with him, what makes him tick. Spike is constantly, relentlessly pulled out of his comfort zone into the neurotypical world. When people take the time to meet him in the middle, it means he doesn't have to do all the work. He is a hard-working kid. In time, I hope he will be able to advocate for himself and tell people what accommodations he needs. Until then, help him out. 

Want to read more? Unravelling my son's love of trains.