“How bad is he?” The reason I am raising money for the NAS

“How bad is he?” The reason I am raising money for the NAS

The internet makes it straighforward for us to believe certain things. It is easy to confirm our biases, to surround ourselves with people and information that correspond with our own views. It has never been so easy to judge others – from behind a keyboard we see a little snippet of the story, a mere flash of someone else’s life, and we decide that we would never behave that way. We would never have that view. And so divides become wider – everyone exists in their own bubble, surrounded by what they want to hear.

A dangerous situation.

Of course, the internet is capable of achieving wonderful things too. If I imagine how my son’s diagnosis could have progressed without the information and support I have recieved online, I see a very different picture to the one that exists. I think it unlikely that we would have support or a diagnosis at all, in fact.

And there is no doubt that the internet has spread awareness in a way that just would not be possible without the ability to send huge amounts of information, quickly and easily, to billions of people all over the world. The internet is a wonderful and terrible thing. On balance though, I believe that it is a force for good.

But we all have a responsiblity to ensure that it stays that way, to spread awareness, and information, and support – not hate and division.

Autism awareness and acceptance is extremely high in my little internet bubble. Obviously, I follow many other bloggers who write about the same issues. My own friends and followers read my blogs. For those with little direct experience of autism, if they are on my friends list, then they are likely to be people who share my values. They are people who would listen to me, before they made any judgements about me or my son.

And then, every once in a while, something happens that makes me realise just how far we still have to go. Something happens that makes me realise that the very worst stereotypes about autism are still very much alive and well and are still being propogated by the general public – or even worse, those that deal with autistic individuals in a professional capacity.

“How bad is his autsim?”

“What kind of bad behaviour should I expect?”

These words were said in front of my son. The person speaking was talking about him as if he were not there, as if he could not hear or understand. The words were said by an individual who was about to spend the day with my son in a professional capacity, someone I was expected to leave him with for the whole day.

The questions were asked before the person had been given any information about my son save this – he is autistic and they would be supporting him for the day. I was not meant to hear them.

How bad. Bad behaviour. My stomach flipped. Bile rose in my throat. I looked over at my son, who did not look like he was listening – but I know he always is.

Luckily, the other professionals in this situation were excellent. I spoke to someone instantly and the situation was dealt with right away. Things were rearranged so that my son would spend the day with familar faces who I know admire and appreciate him.

Do you assume that autistic children behave badly? Ask yourself, even if you label bad behaviour as something else in your mind, even if you consider it challenging, even if you just assume that anyone dealing with them all day is going to have a really tough job, managing anger, dealing with violence? Would you assume that?

Now, imagine what it might be like for you if everyone you encountered, all day, every day, assumed that about you. Imagine how it might feel, to have everyone – in actions, in words, in attitude – treat you like you are a problem, like you are bad. Imagine that everyone you met assumed that spending the day with you would be hard work, an unpleasant task.

Sometimes dealing with an autistic individual is hard for the person caring for them. Of course it is. My son has episodes where he lashes out. He has hurt people. He has screamed and wailed and run away and kicked and thrashed. He has sobbed and sobbed for hours and there has been nothing I could do but hold him.

And he has also had days where he has been dizzy with excitement and laughter. There are times when he has been thrilled by fossils, obsessed by a new book, times when he will tell you about a new passion, over and over, times when he will tell you joke after joke and collapse with giggles. There are moments when spending time with him is pure joy.

Small boy looking up at ceiling and smiling in the Rotunda at Croome

I acknowledge that there are many who face greater challenges than my son, that there are some for whom those flashes of joy are harder to tease out, many who feel frustrated more than they feel excitement and wonder.

But one thing is for sure, if I was surrounded by people who assumed that spending time with me will make them feel miserable, I would probably feel pretty angry and frustrated too.

Many people still make assumptions about autism.

That is why I keep writing – until everyone understands.


This Autism Awareness Week (26 March – 2 April 2018.) I will be raising money for the National Autistic Society’s 7k for the 700k campaign.

There are over 700,000 autistic people in the UK. This World Autism Awareness Week NAS are asking people to walk, run or cycle for 1K a day for a week. That is 7 kilometres in support of the 700,000 people living with autism.

I have decided to aim higher and walk and cycle 7k every day for the 7 days of Autism Awareness week – that is 49km total in the week.

If you, like me, believe that we need to keep campaigning until everyone understands, I would be so grateful if you could support me. The Just Giving Page gives suggested amounts but any amount would be greatly appreciated – there is no minimum. You can find out all about my campaign and donate here:


The NAS will use the funds raised for brilliant projects like the Too Much Information campaign, and to support autistic individuals all over the country.



1 Comment

  1. 3rd March 2018 / 11:18 am

    I liked your post. I won’t be contributing to your efforts because I’m already involved through my grandson. Like your son, he has times when caring for him is challenging but lots and lots of times when he is totally delightful. And also, he is more than aware of what people are saying – plus (as I imagine is the case for your son) he reacts to invisible signals from people who are worried about interacting with him. There is so much misunderstanding and we all need to continue to fight it. Thank you for your summary of the situation.

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