Sensing an Overload

Autism is once more back in the popular press – but is the coverage all that realistic?

This week, Paddy McGuinness and his wife Christine revealed that their four year old twins have autism via a beautiful poem to celebrate their birthday. I’m known to dabble in the poetic when I’m not nattering on about science, and I have to say this one is lovely. It summarises what it is like to live with a child on the autistic spectrum and it does so in a way which resonates with many people who have experience of this.

Now, I do not claim to be a qualified expert on the subject of autism. I have, however, grown up with the desire to understand why certain people in my life see and experience things differently to myself, and so have enough experience of autism for me to know more than a bit on the subject. I’ve both got experience of living and socialising with autistic people and I’ve read rather a lot of articles and studies that have been done related to it. Therefore, being the cynical person I am, when the news broke of the McGuinness twins I waited for autism to be splashed all over the press once more. I was right. Magazines and tabloids alike ran features helping parents to spot signs of autism in their children and other such lifestyle tips.

There is nothing wrong with this, really. But I take issue with the fact that it seems as if this is all the popular press cover again and again and again regarding autism. We are overloaded with the same information every single time there is something related to autism they deem worthy of reporting. Facts from reputable sources are all well and good, and I applaud the coverage. But it seems to be portrayed as a scandal or scare that parents must be concerned about. In my experience of living with someone with autism (and the experiences of those who I’ve spoken to who are in similar situations), the issue is never autism itself. Nor is it the individual diagnosed. No. The issue is those who do not know how to deal with an individual with autism. The popular press is fantastic at grabbing an autism story and running with it, but I personally feel that stories celebrating the condition are few and far between, unless it is World Autism Awareness Week or another such event.

I want to clarify now that autism has no known cause, but there are theories surrounding what it could stem from. Certainly, many people have heard of some of the theories surrounding it. Here, I’m just going to highlight some of them briefly.

The main one is, of course, the MMR vaccination. People today still won’t get their children vaccinated as a result of this study. More or less everyone who knows me can tell you that I have a lot of thoughts on this study, having read it and ranted about it multiple times (such as in this blog post). Put simply, the study was fraudulent and riddled with errors. It has been disproven multiple times in far better studies. But because the original ‘discovery’ was so scandalous, people still believe it and not the more recent disproving of it. Please, if you do one thing today, tell someone that the blooming MMR vaccination does not cause autism. Also, if you know someone who won’t vaccinate their child because they’re scared of their child getting autism: feel free to send them to this blog post. Autism is not something which should be feared. It is certainly not a valid reason to not protect your child against serious diseases. Autism won’t kill your child, but measles just might.

Some studies link autism to maternal genetic inheritance. There is no concrete proof, but some think that other genetic conditions which cause defective neurones could be associated with the condition (there are many routes being explored relating Fragile X Syndrome to autism, though this link does not appear to be a definitive cause, but rather a statistical coincidence). Others are exploring the concept that environmental impacts upon a foetus whilst it is in the mother’s womb could play a part in a child being autistic. This isn’t altogether unrealistic, as we know that certain toxins can cause specific effects in children if they are exposed to them in the womb. However, given the sheer complexity of autism and the inconclusiveness in studies, it cannot be stated as fact. Therefore, any newspaper or person who talks of ‘an autism gene’ is not quoting universally accepted scientific fact.

Another area of exploration has been the impact of parental age at conception upon children. Some studies have associated older fathers with children who are more likely to be more intelligent, schizophrenic or autistic. The press particularly enjoyed the ‘geekiness’ aspect, with a range of articles covering the topic only briefly mentioning autism as an aside. And even then it was implied that autism was a negative effect that parents might want to consider if trying to plan when to conceive a child.

This is, in my opinion, where the problems lie. Autism is only really brought up when there are interesting aspects to the article and it is usually portrayed as some sort of problem. I don’t wish to downplay how serious autism is. It really does have large impacts upon the lives of those who have the condition, and also those who know them. This leads the general public having a sketchy view of autism, and being unsure as to where they stand with autistic people and their personality quirks. I appreciate that the experiences of others may be different, but in my family’s case (and the case of others I know in similar situations) the biggest difficulty an autistic person faces when growing up is setbacks largely based on the awkwardness of others in accepting their different needs and abilities. Whilst having autism leads to them not understanding certain concepts, or being a little too honest in some situations, this isn’t a hugely troubling issue around those who have given time to understand. Rather, it is those who are quick to judge that create many of the barriers autistic people face in education or the workplace.

A recent news article I read was especially heart-warming, regarding an autistic man who was retiring after 28 years in his job, when he was told he would only last six months when he first took the position. His mother wanted to highlight how he had achieved more than people ever thought he would when they first met him. In a world where we are quick to judge, those on the autistic spectrum can be written off almost immediately as ‘odd’ or ‘weird’ or some other such term, because they just don’t fit into the expectations people have. When you get to know them, however, and don’t just take them at face-value, they are still just as human as you or I.

Watching an episode of Pointless Celebrities a while back, author Kathy Lette described how her autistic son had inspired her to play the quiz on behalf of a charity which helps autistic people and their families. The quote she used was one which I personally love. “There’s no such thing as normal and abnormal, only ordinary and extraordinary.” I found myself remembering this as I started writing this post, and so did a little research into Kathy Lette and her son, Jules. He is passionate about drama, and now has a recurring role in BBC medical drama Holby City as a young man with autism. I found an interview he and Kathy had done for Autism Awareness Week on ITV show Lorraine, and it was one of the best pieces of media I have seen regarding growing up with autism. Like mother, like son came to my mind, as he too had a cracking quote. “It’s not a label, it’s a compliment if you have autism.” Jules is hilarious. And not in the “haha this person has autism” manner far too many people in society appear to adopt, but in the “haha this guy has a really brilliant sense of humour” manner. He’s the sort of person I definitely would love to have a drink and a chat with. I hope he has a wonderful career filled with breaking down stereotypes that surround the abilities of individuals with autism.

I want to wrap up by summarising what I want people to take away from this post. Firstly, the MMR vaccine does not cause autism, and people need to realise this. Secondly, there are many, many theories surrounding the origins of autism, none of which are proven, but a couple of the more credible I’ve outlined. Finally, and most importantly: in my humble opinion, the media still has a long way to go in regards to having fair and realistic coverage of autism. Society has even further to go in regards to accepting and embracing those in the autistic spectrum.

Those of us who watch autistic people grow up and come into their own appreciate them for their uniqueness. But for every single person out there who does that (whether they’re as famous as Paddy McGuinness and Kathy Lette, or as ordinary as me and my family), there will always be people who misunderstand those with autism. So I’ll close by saying how much I love the new Maori word that has just been coined for autism: takiwatanga. It means ‘his or her own time and space.’ What a beautiful way of describing it. Now can everyone else follow suit?

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