Tuesday 11 September 2018

Autism 101 - What NOT to say!

Over the last three and a half years since L was diagnosed as being on the Autism spectrum, people have made numerous comments about L, and now O, being on the spectrum. Some of these comments have been made by people who are genuinely curious about what autism is and by those who would like to know more. However many of these comments have been made by people who really should know better.

Some of the comments may seem innocent enough, but depending on how they are asked or said, they can hit a very raw nerve. These comments can turn a conversation that is flowing very easily into a very awkward and silent encounter. I've been thinking about this post for a while now - it is one that I have been itching to write as these comments are being made far too frequently.

So without any further ado, here is my Autism 101 - my top ten of what NOT to say to a parent whose child has been diagnosed with autism.

10. "Are you sure the doctors got it right?"

Ummm, yep, am fairly certain that the Pediatrician, Speech Pathologist and Child Psychologist got the diagnosis right. And considering how much money and time we spent during the assessment period - yes that's right, it took six months from start to finish and several thousand dollars for each child - I am 100% certain that the diagnosis is correct. Also, when you take into account the opinions of the Occupational Therapists, Speech Therapists and Child Psychologist's, who also whole heartedly agree with the diagnosis, the diagnosis is definitely correct.

And on the same line, no, we're not going to go and get a second opinion. We've already got three separate opinions. And they all agree with each other.

9. "I know all about autism, my cousin's sister's neighbour's son has autism."

Okay, pray do tell, what do you know about autism? 

There is a saying - if you've met one person with autism, you've met one person with autism. 

Every individual is different. Every person on the spectrum presents differently. You may notice similarities between individuals who are on the spectrum, but how they experience the world around them, differs from the next. I have two children and both present differently to the other. I certainly don't profess to knowing everything about autism - I learn new things every day.

8. "Are they immunized? Because I've heard that immunizations cause autism."

Yes they are immunized, thanks for asking. 

No, immunizations don't cause autism.

And here's where you can read where those research papers were discredited. Good bye.

This is not a conversation that I will have with anyone as friendships can be lost and conversations can turn nasty when the word "immunizations" is muttered. We are all entitled to our own opinion - mine is that immunizations does very definitely NOT cause autism. L was a different baby from birth. O's autism was also present from birth, her traits just didn't stand out to us until she started struggling socially and emotionally. End of story.

7. "Autism is only fairly recent, isn't it?"

This is a comment that I can excuse being asked as while autism has been known about for a long time, it hasn't really been in the public eye as such. Back in the good old days, an individual who was on the spectrum may have been institutionalized or marginalized or seen as odd as there really wasn't a lot known about autism. Albert Einstein, Sir Isaac Newton, Michelangelo, Charles Darwin, Sir Anthony Hopkins, Susan Boyle, Temple Grandin - some where diagnosed early in life, some a lot later and some, if a diagnosis could be made retrospectively, would most likely be on the spectrum.

So yes, in the public eye, autism is fairly recent. But medically, autism has always been present just not well known! 

6. "My children eat what they're given. All children will eat the food when they're hungry, you should try it!"

That's fantastic for you. Your children must not have food aversions! My two children, on the other hand, will not eat when they are hungry. They would prefer to eat nothing at all than eat something that induces a feeling of fear, discomfort and anxety due to the smell, taste or texture of the food that is in front of them.

Believe me, we have tried to make both O and L eat certain foods but some battles just aren't worth fighting. If they are happy to eat baked beans or spaghetti for dinner, at least they are eating something.

5. "So have you tried [insert a diet/medical treatment/parenting class/any other odd solution] to fix them?"

Nope, because my children don't need to be fixed. They are perfect that way that they are. Autism is a part of my children, if it was taken away, they would no longer be them. I love my children exactly the way that they are.
By the way we have had to go on a lactose free, super high iron content, FODMAP diet but not to "fix" autism. This was to try to alleviate some of L's health issues when he was younger. And no, the lactose free, super high iron content, FODMAP diet made no difference whatsoever to how he was neurologically! It did help with some of his health issues.

4. "But they look so normal!"

Oh I'm sorry, that's my fault. I didn't put them in their autistic clothes today! And they have their spare heads on, so you'd never tell.

To be perfectly honest, I really don't know what autism looks like and what normal looks like.

My little superheroes have mastered the art of putting on a mask so that they blend in at school. You should see them when they get home. To their safe place. And explode. Every. Single. Day.

Then you might say "ohhhh…"

3. "My son/daughter/children have meltdowns too - yesterday they had a meltdown over not getting a toy/lolly at the shops!"

This comment is a pet hate of mine.

No, your child didn't have a meltdown, they had a tantrum. There is a huge difference. 

Don't get me wrong, a tantrum can escalate quite quickly into a meltdown. But if your child is talking to you, making demands, can stop and start yelling and screaming at will, that is NOT a meltdown. That is a tantrum.

O and L can both throw tremendous tantrums like every other child their age. They also enter into meltdown mode on a semi-regular basis due to sensory overload, a build up of anxiety, our lorikeet being too noisy, a small change at school, not understanding social interactions ….

Would you like to experience a meltdown? You're more than welcome to visit our house at around 3.05pm every afternoon of the week. I can guarantee that one or both of my little superheroes will be in meltdown mode on any given day.

2. "Oh, but we're all a little autistic, aren't we?"

Nope, just no, and a big fat no at that! I often respond in my head with "and stupidity is a choice, some people seem to abuse the privilege!"

This is like saying "oh, you are a little bit pregnant!" You either are or you aren't! 

Please, please do not tell me that "we're all a little bit autistic." This comment will often get a response of "mmmm" and then a very quick change of subject! We do all have little quirks, we're not all "a little bit autistic."

And last but not least ….

1. "Oh, I'm sorry...."

Why are you sorry? There is nothing to be sorry for.

When you bump into someone in a shopping centre, you say sorry. When you spill coffee over important work documents, you say sorry. When you make a mistake, you say sorry.

When I'm told "oh, I'm sorry," it makes me feel like I should be sad that my children have been diagnosed with autism. It makes me feel as though there is something wrong with my children.

My children are not a mistake. There is nothing wrong with them. They are just a different way of being.

Autism has made me view the world in a different way.

Don't be sorry for me. Be sorry that you don't see the world from my children's point of view!

So what could you say instead?

"What is involved in gaining a diagnosis of autism?"

"I don't know much about autism, can you tell me a little more?"

"I'd love to know how autism affects your children!"

"What's the difference between a meltdown and a tantrum?"

"Is there anything that I can do to help?"

And please be supportive!

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I would love to hear your thoughts on my blog. I do read all the comments that are posted. Thanks so much for stopping by. Jen xx