Well, if you live in Ireland the word Autism has been causing quite a stir this week, or rather the misuse of the word Autism.
Like many parents, I am pretty naffed off by the blatant ignorance demonstrated by a local right wing politician and her antiquated understanding of what it means to be Autistic, and then to make matters worse, her apology as if it was an insult.
Being uncomfortable in large social groups does not make a person automatically Autistic. Just because a person does not engage in conversation with you does not automatically make them Autistic – maybe they just don’t like you! Jumping when the hand dryer in the loo goes off unexpectedly, does not necessarily make a person Autistic. Trust me, it’s a lot more complicated than that.
Part of the problem in achieving true acceptance of Autism and an environment of meaningful inclusion, is the lack of actual understanding and sometimes a lack of interest in finding out.
1/65 school age children in Ireland are now diagnosed with Autism, so It’s about time we all started trying to understand it a little more. To those of you that already do – THANK YOU.
Monty Python has also been in the news this week, following the death of Terry Jones. So in the words of Monty Python, I decided to ‘always look on the bright side of life’ and try to use this as an opportunity to educate.
As a family, we have never hidden any element of Patrick’s differences. I’m sure that some people think I maybe over share a little too much, but I feel that an important part of promoting understanding of difference, is to talk about it in the mainstream forum, because to us it is our normal.
I am always happy to discuss Autism and ADHD and answer questions or ideas that people have to dispel some of the myths that exist. But there are one or ten, that do make me have to take a deep breath before I respond.
1.Why do you want your child to have a label? Don’t you worry people will treat him differently?
Patrick is not a tin of beans, he does not have a label. He has a diagnosis, this is very different from a label. It helps us to recognise, support and understand how these conditions impact on so many parts of his life, including his communication style and emotional regulation capabilities. It does not however define him. In terms of how people treat him, I am more worried that people will not treat him differently when necessary. His abilities, skills and needs are different, therefore they should be treated with a different approach to help support him being successful and comfortable in every area of his life.
As long as we recognise the fact that different is not less, then there should be no problem – unfortunately we are a long way from many people understanding that particular fact!
2. He doesn’t look Autistic!
What is an Autistic person supposed to look like exactly? I completed a course on special educational need last year and the lecturer described Autism as an invisible condition. She also said that in her experience, children with Autism are often the most beautiful person in the room. As an Autism Mama I couldn’t disagree with her on that one.
With his surfer dude blonde hair, sallow skin and light brown eyes, Patrick is absolutely bloody gorgeous. People often tell me he looks very like me, and although I’m sure they are referring to his rugby player physique, I always take it as a compliment.
But seriously, some disabilities/conditions do come with a physical presentation that is different in some way. But as it is 2020 I think we all should know by now that Autism is a neurological condition that is not visible to the naked eye.
No one ‘looks Autistic’. This comment always implies that your child is in someway defective, and should therefore carry a big sign around to warn people. This is absolutely not the case and is offensive to be honest.
3. He must be brilliant at maths, is he?
Patrick is very good at rugby, annoying his sisters and eating us out of house and home, just like a lot of 11 year old boys. But he doesn’t have the ability to count cards or multiply huge numbers in seconds – he’s Patrick Hayden, not Matilda Wormwood. He was very proud of himself for learning his 8 times tables this week, and we were proud of him too. He got to 8 x 6, not 8 x 425.
Less than 5% of the Autism population have a mathematical super-power. This idea of being a maths genius comes from the 90s movie ‘Rainman’. For many people of my generation this Oscar winning movie was their first introduction to Autism. It was a great movie, and Dustin Hoffman gave an excellent portrayal of Raymond. But, there’s always a but, it made many people think Autism could only present that way.
The most popular phrase in the Autism community is ‘if you’ve met one person with Autism, you’ve met one person with Autism.’ Basically, everyone is different, just like in everyone who doesn’t have Autism! There are of course specific criteria in place to identify a diagnosis of Autism, and I really wouldn’t want to confuse you with the details, and you honestly don’t need to know them all, but just like a wintery snowflake when you get up close, everyone is different (and spectacular).
4. That Child Just Needs A Good Slap (on seeing challenging behaviour).
If a child in a wheelchair slowed us down from entering a building because they were wheeling themselves up a ramp, would we suggest slapping them for the inconvenience? No of course we bloody wouldn’t. So why is it ok to suggest doing the same for a child with Autism or ADHD, they simply have no control over their challenging behaviour. It is their way of communicating the anxiety, distress and actual pain they are feeling.
The parents are having a hard enough time trying to deal with that behaviour without having to deal with ridiculous advice from a gang of arse holes. I encourage people who may have this attitude to try a new approach, something along the lines of “that child needs a good….:
- Samaritan to help their parent out
- Run around to get rid of their frustration
- Support system in place to help make like easier”
Because those ideas actually help!
5. All People With Autism Will Scream if Subjected to Loud Noises
I run a youth club for young people with Autism. Last year on a particularly busy night, I made the not so wise decision that we would make pizza. Many of my friends are still waiting on the cup of tea I offered them the last time they called my house, because I have a very short attention span. I forgot I had put pizza in the oven – the fire alarm in the youth club went bonkers.
Based on popular belief about Autism, the whole room should have gone bonkers. But the group barely even noticed. The only person running around having a meltdown was me!
Now this is not to say that loud noise, bright light, strong smells and various other sensory experiences aren’t truly painful for some people with Autism, but it isn’t everyone and every sensory experience. Some Autistic people are sensory seekers, including my son, and in times of stress seek out loud noise or a lot of strong touch, such as squeezing. If you see Patrick in a corner with his headphones on, he is probably listening to Metallica on full blast – another influence from his Daddy.
My suggestion would be, to ask each individual Autistic person what causes them anxiety and do whatever you can to reduce that sensory input. Also remember that sensory overload doesn’t always present with an immediate reaction. In my own personal experience, Patrick’s sensory overload builds gradually and he will only allow his reaction to this to be set free when he feels safe – usually at home.
The best advice I can give anyone is get to know people with Autism in the same way you get to know people who don’t have Autism. We can all do better at understanding how to make everyone more comfortable in our world.
6. Autistic People Don’t Smile
I have no idea where this one came from. But in my experience it is crap. I know many, many Autistic people and they all smile, laugh, experience joy and fill me with joy to be around them.
In fact I see many Autistic people finding the magic in every day, the little things that so many of us have become immune to. I watch a video on Facebook like week of a beautiful Autistic child enjoying bubbles, finding the absolute and purest joy in them.
7. He Can’t be Autistic Because…..
Unless you have a PHD and have qualified as a a Clinical Psychologist, you really do not have the right to say that. If a person has a diagnosis, I can guarantee you that was not arrived at quickly, easily or without immense stress from that person’s family. It was a lot of reviews, assessment, observations, meetings, soul searching, sleepless nights and a million conversations in the parents’ head about should they even seek an assessment. Are they letting their child down by doing it or not doing it?
Please never question a person’s Autism diagnosis – when you feel a person isn’t Autistic. All it means is that person does not meet your expectation and poor understanding of what Autism means. To the parent you are questioning their abilities as a parent, and trust me they persecute themselves enough on that one.
ASD stands for Autism Spectrum Disorder. Autism is a spectrum, it can present in a gazillion different ways. Just like every neurotypical person, every Autistic person is different, unique and has so much to offer the world.
8. Girls Can’t Be Autistic
Statistics vary but approx 80% of diagnosed Autistic people are male. Many experts feel that percentage is incorrect and that a lot more girls are Autistic, they just mask (cover it in a conscious or unconscious way to fit in). A lot of late diagnosis are for women.
9. Why is he doing that, he looks stupid and annoying – you need to stop him
Usually referring to stimming – short for a ‘self stimulatory behaviour’. This often presents as rocking, spinning, pacing, hand flapping, screeching, tapping – again unique to each Autistic person. If it seems stupid you, then you probably are stupid. If you find it uncomfortable to watch, leave. If you find it weird, inappropriate or offensive, then you’re offensive and need to get over yourself. I’m sick of sparing the feelings of people whose opinions are harmful or offensive, deal with it! The world belongs to Autistic people as much as it does anyone else.
Stimming is an absolute necessity to many Autistic people, to reset their internal sensory system in times of immense stress, to calm, to soothe. It is as natural and necessary as breathing and if you force a person to stop, then you are actually physically abusing that person. The only time I would attempt to stop a stim is if it were harmful to the person or a risk to themselves and others, but if you have to stop it, do it calmly and gently. Talk through with the person why you are doing and how you will work together to find a calm place.
10. Autistic People Who Don’t Speak Don’t Have a Voice.
Oh but they do, you just have to listen harder. Communication is not just about words. Every person has a right to have voice heard, even if it isn’t spoken.
Non verbal people communicate in so many ways, you just need to take the time to find out how.
So, here endeth the lesson, if you stuck with me to the end, thank you for the respect you have shown to my son by wanting to learn more. Now go forth and multiply the number of people who know this stuff.
Thank you and good night…………………………