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Stories About Autism

Hey, autism community, can’t we all just get along?

Some of you will know this, and some of you won’t, but there’s a whole autism community out here online.

An autism community made up of parents, professionals, carers, teachers and people on the spectrum, all sharing their experiences, in an attempt to offer advice, support, and friendship.

It’s never been easier for people all around the world to share their experiences, just like I do here. There’s autism blogs, facebook pages, twitter accounts, and numerous Facebook groups where thousands of people interact daily. 

The fact that there is an autism community is amazing, and it’s been a massive help to me during this journey, teaching me so much.

When Jude was diagnosed 6 years ago I tried to learn as much as I could about autism. I read books, attended courses, tried different therapies, diets, anything to find the best way to help them. I knew nothing about the world of autism or the extent of the autism community that’s out there

I spent hundreds of hours online, reading blogs of other parents, blogs of those on the spectrum, differing expert advice, and began to participate in various online communities. I was looking for answers, for support, and for other people who understood what we were going through. When I found the courage to reach out, I found and met others who were in my situation, who just get what’s going on in my life.

In general, I’ve found the autism community to be full of friendship, advice and real compassion for each other. What I’ve learned, and the people I’ve met has even inspired me to make my own contribution to the quest for greater awareness and understanding with this blog.

However, during the last few months, I’ve also come to realize what a minefield the autism community can be.

It’s full of different opinions, which is great, and one of the reasons it can be so interesting. A good, well-argued debate never hurt anyone.

But I never expected to find so much anger and judgment towards people that these differing opinions inspire.

There seem to be so many people firmly rooted in certain camps, unable to accept anyone’s right to an opinion different to their own, full of anger, hate and abuse.

I know we live in a time of the “internet troll,” with keyboard warriors determined to upset others,  I just never realised this would apply within a community discussing a disability that we all have a common link to. 

The recent publication of Steve Silberman’s book NeuroTribes is one such event that has divided opinion. It’s led to people clamoring to support or denounce his work. Again, by itself this is fine, but watching how these debates escalate into personal attacks is sad. 

With the release of In a different key by John Donovan and Caren Zucker the controversy has escalated. It seems impossible to be able to like both books, you either support one or the other.

It also seems totally unreasonable that you could actually like parts of each book, but not totally agree on everything.

Personally, I’m halfway through Neurotribes, and am yet to read In a Different Key, so can not pass judgment. But even if I had completed them, and had strong opinions, why should that make me seek out those with differing views and attack them or even abuse the authors who wrote them?

There are many topics just like this that provoke the same reaction and cause fighting amongst the autism community. Here’s just a few.

Whether you should say someone is autistic or “has autism”:

On one side you have those who believe you should use person-first language, ie ‘Jude has autism.’ This means you put the person first, not the disability. That the person is not defined by their autism, and that it is just a trait of who they are.

On the other you have those who believe person-first language is offensive, and instead you should use the word autistic, ie, ‘Jude is autistic.’ They feel that saying ‘has autism’ means that you can separate the autism from the person, and that it suggests it is not a part of who they are. Using ‘has autism’ is being negative and sounds like autism is something bad, just like saying someone ‘has cancer.’

If you read through my blog posts you’ll notice that I interchange between both. I’m aware of how upsetting language can be for people, and I respect everyone’s right to be addressed how they choose. Whichever I choose I am going to upset someone, but if I was talking with someone who preferred one or the other I would always defer to their wishes. The fact is there are people who are autistic (or have autism) who are on both sides of the argument, so in all honesty, how can you choose which is right?

The fact is there are people who are autistic (or have autism) who are on both sides of the argument, so in all honesty, how can you choose which is right?

This graphic below is from one of my favourite Facebook pages Autism From A Dad’s Eye View. It shows us exactly how it should be. It doesn’t matter what language you prefer to use, it’s the feelings about that person and how you treat them that are most important.

IMG_2558

When Tommy and Jude are able to communicate to me what they prefer I will happily back their choice and use that term when describing them. Until that day comes I’ll carry on using both, and hope that people realise I’m not trying to offend anybody when doing so

The pros and cons of different therapies:

When you type autism therapies into google you receive 16.2 million search results. There’s ABA, gluten-free diets, biomeds, supplements, medication, cannabis oil, creams, essential oils the list is endless.

I’m not even going to begin to tackle the pros and cons of any of these, and unfortunately, there are people out there looking to exploit parents in their quest to make their children’s lives better.

What I will say is that autism is a vast spectrum, what works for one person doesn’t always work for another.

That makes it frustrating at times, especially when you see or hear about something working so well for somebody else, and when you try, it doesn’t make a difference or even makes things worse.

But if it doesn’t work for you, it doesn’t mean other people who are passionate about therapies they’ve tried are lying, exaggerating their successes, or trying to prove you wrong.

Sometimes methods or therapies aren’t right for our children. If something has worked for somebody’s child and their child is happy, then good for them, we should be happy for them, not quick to attack them or call them liars.

The cause of autism:

Oh boy, this is an explosive one. Google shows 40.4 million search results, so you can imagine the number of theories there are out there. One of the first theories was it was due to ‘refrigerator mothers’ and luckily we’ve moved on since then, although sometimes not too far.

The most explosive one that causes massive in-fighting is the subject of vaccines. There are many parents out there who believe their children are victims of vaccine poisoning, that before they had their injections their children were not showing signs of autism.

Even Donald Trump weighed into the debate recently linking vaccines with the ‘autism epidemic’ sweeping across America.

The other side of the argument cites the lack of scientific proof, and the dangers of not having your child vaccinated. 

This is probably the most abusive argument I’ve seen in the community. I understand how emotive the subject can be, but directing that anger at eachother just seems counter productive.

The spectrum itself:

Because autism is such a vast spectrum and people can be so different sometimes people like to use language that can try to  describe where they fit on that spectrum. Labels such as ‘severely autistic’ or ‘high functioning’ are used in an attempt to help others better visualise their capabilities. 

In the past I’ve used the words ‘severely autistic’ when describing my boys, and on reflection I now try to steer away from that term. I think it helps people who know little about autism picture the complexity of someone’s needs and challenges using labels like this, but I can see how they may also be unhelpful or offensive.

Again, it doesn’t upset me, but being aware of how it does upset others means I try not to use this language.

Parents who wish their child didn’t have autism, and those offended by the people saying it:

Being a parent, I get this one completely.

Would I want Jude and Tommy not to have autism?

My gut reaction is yes, because it would make their lives so much easier

I know how challenging their lives are every day because of autism, the frustration they feel at being unable to communicate, the meltdowns they endure, the self-harming, the sensory issues, so yes I feel comfortable in saying I would take it away if I could. 

I also understand why saying that would be so upsetting to others, as autism is an integral part of their personality and who they are. By saying this I’m saying that there is something wrong with my sons.

So, by stating I wish they didn’t have autism am I saying I wish they were someone different?

No, I don’t think so, that’s not what I mean.

Do I love the person they are?

Yes, unconditionally, and with every ounce of my heart.

Do I wish their lives could be easier, that they didn’t have so many challenges trying to function in the outside world?

Of course I do.

I totally respect both sides of the argument, for me it’s more about the size and amount of challenges my sons face every day, and that I wish they didn’t have to face. The fact is they do have autism, and my life is devoted to helping them find ways to cope, grow, and be happy.

I could go on and on, but these are just a few of the issues I see that regularly lead to in-fighting, anger and abuse.

Now is the time for the community to make things right.

I found what I think is the perfect graphic to describe the problem, on the Facebook page Autistic Not Weird

Autisticnotweird

The author of the page, Chris,  also wrote an amazing article about this topic, which I highly recommend you read

I’m not trying to pretend I don’t read things online and disagree with them, or even get angry about them. I’m not trying to take sides and say who’s right or wrong. I’m not suggesting that some of these arguments aren’t hugely important and that they shouldn’t take place at all. My problem is the manner it is being carried out in, and that it is scaring away the very people who need the support of the autism community the most.

What I’m asking is for everyone to take a step back for a second, pause and really think about what they are arguing about.

What if we invested all of that time, passion and energy into something worthwhile?

What if we focused it all into what brought us into the online autism community in the first place? 

What if we could accept everyone’s right to their own opinions and beliefs?

We’re all in this online space because either you’re on the spectrum or care deeply about someone who is.

We’re all active in this online space because we want to educate ourselves and the rest of the world about autism.

We’re all here because we want to make the world a better place for our loved ones, and help create a more aware and accepting world that the autism community can flourish in. 

Gandhi once said,

“Be the change you want to see in the world.”

If we want the world to be more aware and accepting toward autism, surely we need to start by looking at ourselves, and be more aware and accepting of each other?

15 comments

  1. Susan - February 25, 2016 8:38 pm

    Here, here!

    Reply
    • James Hunt - February 27, 2016 10:56 am

      Thank you Susan 🙂

      Reply
  2. Thomas Sutcliffe - February 26, 2016 1:49 pm

    Excellent piece.

    Reply
    • James Hunt - February 27, 2016 10:57 am

      Thank you Thomas, appreciate it 🙂

      Reply
  3. An imperfect mum (Catie) - March 7, 2016 1:27 pm

    Oh yes, I hear you! I didn’t realise that I was walking (or rather typing) my way into such a minefield. My blog is all about positivity but unfortunately I have had a few very negative/angry comments from people pushing their agenda. Sad that we can’t just support each other and value others’ opinions.

    Reply
    • James Hunt - March 7, 2016 7:22 pm

      Sorry to hear that. Unfortunately, it will happen, I’ve had a few too. I’m happy to debate opinions, but if it’s abusive then it’s easier just to ignore.
      Whatever you write will upset someone.

      Reply
  4. Lady Nym - March 7, 2016 5:53 pm

    I especially agree with the debate over which terms to use. It is interesting and useful to think about whether we’re being helpful/offensive/accurate with the language we use but it does feel like we’ll offend someone whatever we write and it does get to the point where that can be off-putting. It is important to keep writing about ASD and it’s a shame if people don’t for fear of using the wrong term because the language around it is so controversial.

    Like you, I use a mix so I’m either appeasing or offending everyone equally…

    #SpectrumSunday

    Reply
    • James Hunt - March 7, 2016 7:20 pm

      Exactly. The most important thing is that we keep talking about it. Whichever language you use you will upset someone

      Reply
  5. Mummy here and there - March 9, 2016 7:15 pm

    Greqt piece tis a totat mindfield. People.get so caught up with language and they can forget about the disability. I don’t get involved too much as it can get quite hairy. Someone somewhere will disagree and likewise somepne disagree. X #spectrumSunday

    Reply
    • James Hunt - March 18, 2016 8:13 am

      Unfortunately you’re right, someone will always disagree, and you can’t please everyone. Which on it’s own is fine, it’s the abuse that seems counter-productive!

      Reply
  6. Clare - March 12, 2016 9:03 pm

    I LOVE this James! I am not really in with the online autism world, for some reason I haven’t gone looking for it. I think it is through fear of people being so judgemental and pushy with their opinion. I see things that upset me, but that is because I feel a certain way about that particular topic for example the suggestion that there is a specific cause for autism. One day we may have real answers but for now I am not going to stop vaccinating my children or thinking I could have done something differently during my pregnancy that would mean Hayden didn’t have to struggle through certain aspects of his life. You have put this post together so well, without being obvious about your opinions on each subject. Trolls are horrid, and I hope I don’t have to experience them ever about any part of my life, but I know I am exposed to that with ‘what I do’. Just like all areas of parenting, with autism included or not, we should just really work harder on supporting each other! Thank you for linking up to #spectrumsunday I really hope to ‘see’ you again this week xx

    Reply
    • James Hunt - March 18, 2016 8:15 am

      It would be great if we could all support each other wouldn’t it! As I said, debate is fine, and can make positive changes, it’s the ‘trolls’ that are the problem. Don’t be put off though, there is so much good in the autism community, especially learning from autistic adults, that can really help parents. You just have to find a way to filter out the bad stuff 🙂

      Reply
  7. Stephs Two Girls - March 17, 2016 2:23 pm

    Oh gosh, yes, agree with everything you’ve written. We’re also 6 years after diagnosis so have had the same time to read and digest all the arguments – and to realise that everyone is different, but some are more single-minded and sure they are right than others 😉 great to have found your blog! Love that first graphic, had missed that one!

    Reply
    • James Hunt - March 18, 2016 8:16 am

      Thanks Steph. By now it is all of the same arguments, so we’ve heard them all before. I just try to filter them out, and focus on the good you can give and receive from the autism community 🙂

      Reply
  8. Gary Jesch - April 4, 2016 11:37 pm

    Well put, James. So far, our community website has not attracted the voices of those who make things controversial. While that may come with a broader reach someday, it’s kind of nice right now to be the mellow ones. Feel free to take a look and maybe you’d consider posting some of your articles there.

    If you have a RSS feed for this site, let me know and I will be happy to connect us to you.

    thanks much,
    Gary Jesch

    Reply

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