We Dont Always Follow The Rules
There are many rules in life which we have to learn that are never taught. For example, we say thank you for a gift regardless of whether we like it, or asking if someone else wants the last slice of anything . The problem is, these subtle social guidelines are everywhere and, more often than not, autistic people break them without a second thought.
Obviously, it is not an autistic persons intention to break these rules, its just that, as the autistic mind works on absolutes , it can be a challenge to understand many of these acts wherein nearly all cases they go against how they would seem i.e. if someone asks how are you? they dont always actually want to hear how you are, they just want you to say fine and then you can move on.
Nevertheless, whilst autistic people arent great at getting the message when the message hasnt been made clear, we are incredible at memorizing what we are told and are brilliant at following instructions to the letter. Therefore, if theres some kind of rule that an autistic person doesnt seem to be following, just tell us. its not like we want to be naïve to this and, whats more, if you know we struggle and arent doing anything about it, well that, my friend, is perhaps more rude than anything we do.
Why Do We Use People First Language
For many entering the workplace and/or places of academia, when the question which this article is based around is raised, they will be taught to use people first language, over phrases such as autistic person.
The reason for this stems from the belief that, if you are identifying someone as a person before their condition, you limit the risk that said person has of becoming synonymous with what they have.
In theory this is all well and good, however, it doesnt take too much digging to see that the problem with this, is that we are not solving the issue of inequality in the workplace, just sweeping the autistic diagnosis under the carpet.
Autism and employment is something I have previously discussed, so I wont repeat myself here. However, I have chosen to mention it as it demonstrates the almost immediate debate surrounding people first language: a debate that has since picked up speed, becoming a major cause for controversy amongst anyone wanting to discuss autism, and consequently a major pain in my Aspergers discussions.
Don’t Perpetuate Stigma And Misunderstanding Around Autism
That said, there’s one thing you should never do.
Taking any of the words used to describe autism to say something negative about a person is incredibly disrespectful. You are taking something that should be celebrated and making it an insult.
The same goes for words previously used to describe intellectual disability getting thrown around as insults.
These words carry with them a history of misunderstanding and stigma. And if you use them in this way, you are helping perpetuate that.
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Derogatory Language Or Slurs
Language matters and the words we use have impact. We strive to use language that respects each member of our community, and the use of derogatory language or slurs is unacceptable and reprehensible. The use of the R-word in any form, especially when describing an autistic person is unacceptable. Using “autism” or “autistic” as a slur or insult is also never acceptable.
A person’s diagnosis should never be mocked. Members of the autism community deserve to be treated with respect and accepted by their communities. A core mission objective of Autism Speaks is to increase understanding and acceptance so that people with autism can reach their full potential.
When It’s Hard To Go Out
Being out with people, in crowds, can be hard for people with autism.
“I like to compare those situations with a washbasin,” says Zehrer. “Every impulse is like a drop of water. It can be a thimble full, a cup or a bucket. For non-autistic people, the water can keep on dripping, it will just run off. But for autistic people, the drain gets blocked.” And their stress levels keep going up.
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Why We Should We Use People First Language
The problem I find with the previous view, is that it doesnt take into account those in the autistic community for which autism isnt something they want to celebrate or highlight.
These are the people who, for them, autism has drawbacks and they may not want to be associated with the thing which brings them complications in day to day life.
Futhermore, even those who do not see their autism as a drawback, may also fit into this way of thinking, as though they believe autism is a significant feature for them, they believe it is not the sole reason for everything they do.
This is the reason I personally use person first language. I believe that, even if a person does identify as autistic, this shouldnt be the first point of call for them. The autistic spectrum is absolutely huge and I dont believe that by stating you are on it, you are giving very much information away about yourself .
I also believe that the moment you state you are autistic, you open yourself up to a range of false assumptions based on an individuals experience of autism. Though by no means do I think this should result in people hiding their autism, but just pushing back this announcement by two words could certainly avoid blindsiding someone with your diagnosis.
So How Should I Describe My Child Or Someone Else’s Diagnosis
If you don’t know which description to use, don’t worry, it’s taken a while but I’ve figured out what works for us and I promise you will too.
There are two main approaches:
- Person-first : The argument for this approach is that it doesn’t define someone by their diagnosis. It’s not labelling somebody.
- Identity-first : The argument for describing someone as autistic is that it’s an inherent part of their identity and something to be proud of.
Last year autistic speaker Chris Bonnello, through his website Autistic Not Weird, asked 11,000 people how they describe a diagnosis.
Just over half of autistic respondents said they only use “autistic person” while 11 per cent preferred “person with autism”. About a quarter of people were happy to use either.
Almost half of the non-autistic people with no autistic relatives said they only use “person with autism”.
“This does seem to back up the experience of many of us in the autism community, that professionals are taught to use person-first language but those on the spectrum themselves are more willing to claim the word autistic as their identity,” Mr Bonnello says.
“I see the arguments for ‘person with autism’ but I feel tempted to give the comeback that I don’t see my autism as something that is so terrible that it has to be pushed to the end of the sentence as if it’s not part of the real me.”
Mr Bonnello also flags the danger of becoming too caught up in the debate.
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Carry On The Conversation:
What are some autism misconceptions which you would like to clarify? Let me know in the comments below. And, if you want to learn the truth behind autistic meltdowns, check out this article: Exploring Autism: What is an Autistic Meltdown?
As always, I can also be found on Twitter and via my email: .
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Thank you for reading and I will see you next week for more thoughts from across the spectrum.
Is There A Test For Asd In Adults
Clinicians have developed different tests that can help diagnose ASD in adults. These include diagnostic tests such as ADOS 2 Module 4, ADI-R, and 3Di Adult.
However, it is not clear how reliable these tests are for adults. The reasons for this include:
- Researchers who look at the reliability of ASD tests often use a small number of study participants.
- Not many research studies on testing for adult ASD include enough participants from historically underserved groups, such as People of Color or people who are LGBTQIA+. This means the results of studies looking at ASD testing methods may not represent a true population of autistic adults.
- Many clinicians may not be familiar with the signs of ASD in adulthood. This is especially true if the patientâs symptoms are not severe or if the patient also has other conditions, for example, anxiety.
Autistic people may have of co-occurring conditions, such as anxiety or depression, than those in the general population.
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Autism Is Not An Illness
Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.
It’s something you’re born with or first appears when you’re very young.
If you’re autistic, you’re autistic your whole life.
Autism is not a medical condition with treatments or a “cure”. But some people need support to help them with certain things.
We Cancel Plans At The Last Minute
Its always a bit of a gut punch when youre all dolled up ready to head out and, suddenly, your partner in crime cancels. But, whats more frustrating is when that person comes out with some lame excuse for why, i.e. my car broke down whilst I was on the way to wash my hair and I suddenly came down with the flu as my dog ate my homework
In reality, the autistic person in question would probably prefer to have had all the above happened as, the truth is, they likely have been hit by a truck of anxiety. This has been the case for me on so many occasions and, believe me, no matter how disappointed you are with us, we are likely to feel twice as bad about it ourselves.
So, if this happens to you, try and not pile onto our woes and maybe encourage us to open up about the thoughts holding us back. If we mention that we do want to go out, but are anxious about the unexpected, offer us a get out of jail free card by saying something like We can leave whenever you want . Furthermore, if the anxiety really is too much, why not move the evening plans to a lesser packed venue, such as someones home? Fun doesnt always have to involve overpriced drinks.
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Why We Shouldnt Use People First Language:
When looking at why we shouldnt use people first language, its impossible not to mention Jim Sinclair , as it is largely his writings in 1999 which have spearheaded the anti-people first language movement.
In his article: why I dislike people first language a subtly titled summary of why the man with the great name, hates people first language, Jim Sinclair gives three highly detailed reasons for why we should stop saying person with autism:
In the 19 years since these words were written, many have built on Sinclairs points, and now it seems the modern day argument against using person first language surrounds the idea that its not about how we see ourselves, but how we want others to see us.
Simply put, many people who are against people first language now believe that there is a fourth reason for using the opposite: if we put our diagnosis before anything else, we show that the person and the condition are inseparable. This helps to raise awareness of how autism looks and, as a result, progresses general attitudes during a time when autism is being hotly discussed.
How Do You Speak Up As A Parent
I’ve lost count of the number of times I want to call someone out on the language they’ve used around autism or disability.
How do you do this calmly and politely, especially if they’re talking about your child?
Shannon Des Roches Rosa has been writing about autism since her son Leo was diagnosed on the autism spectrum in 2003 and she is the senior editor of The Thinking Person’s Guide to Autism.
Shannon says it’s hard for anyone to change habits, especially when it comes to language.
“If people don’t know any better and you say ‘Did you know that this is considered harmful?’ and they say ‘I am so sorry I will try and change my usage’, even if they make a couple of mistakes because it does take time, I understand,” she says.
“I only have a problem with people who have been told that specific words are harmful and then they insist on using them anyhow because then they are disrespecting Leo and his community.”
The flip side of that is that through Patch and autistic community I’ve learnt some beautiful words which are important to them words that celebrate difference, like neurodiverse and neurodivergent.
I use them loudly and often in public, in the hope others adopt them too.
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We Must Consider The Voices Of The Autistic Community
No community is a monolith, and this includes the autistic community. There will always be individual preferences, and it is important to honor the individual on a case-by-case basis. However, when we are talking, writing, and researching about the larger community, we must take into account community voices when deciding what language to use.
Help During A Meltdown
We tend to expect a lot from children with autism. They thrive in environments that are calm, familiar, and supportive. But we often ask them to succeed in grocery stores, airports, and classrooms.
When children with autism are overwhelmed, they can experience meltdowns. Meltdowns can involve:
- Withdrawal. The child retreats to an inner world and stops talking altogether. The child may perform repetitive actions like rocking or hand flapping to self-soothe.
- Tantrums. The child cries, screams, stomps their feet, or curls into a ball.
Parents often become adept at dealing with these episodes, but always ask if you can help. You could ask a restaurant to turn down the music, for example, while a mother attempts to calm her child.
You can also intervene directly. Experts suggest using a gentle voice and simple commands. Tell the child, Get up, and stand next to me. If the child cant respond, stay nearby and let the meltdown work through. When the child seems calmer, try the instructions.
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Do Random Acts Of Kindness
Buy the persons coffee behind you on a Monday morning, buy a young familys breakfast for them, or smile at a stranger. Do random acts of kindness without even thinking and pay it forward. Such small actions can go a long way and make someones day that much better, plus, you feel pretty good afterward, too.
Can Someone With Autism Have A Normal Child
There are a lot of advantages to having children when you are overly egotistical.A parent can get to a deeper level of understanding their autistic child on a deep level if they know it.In the same way as neurotypical parents, onsautic parents have many strengths and weaknesses.If someone has an issue with anxiety, they are still welcome to parent and be good parents.
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Autistic People And Emotions
People often say that autistic people lack emotion. Zehrer can explain that: “Rather than it being too little, autistic people usually have too much feeling. Emotions are stimulations, too. And some don’t know how they feel.”
It’s all just confused. They lack the time to sort through and order their emotions. And on top of that, many autistic people are far too concerned with trying to behave like a non-autistic person, and that costs them a lot of energy and strength.
Listen To The Parents
Just as you surround a child with autism with acceptance, do the same for parents. Your support could mean the world to them.
Advocates explain that parents would love a night off to decompress and get away. If you feel comfortable with the idea, offer to babysit. If you dont, provide a listening ear to a parent in need. Schedule a regular coffee date for decompression and chatter, or set up play dates between your children while you both supervise.
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What Is The Chance Of An Autistic Parent Having An Autistic Child
How does autism manifest itself ocial causes autism? ?Almost all cases are caused by genetics, according to research.Older parents pose an increased risk for autism in their own children.In families with ASD, two to 18 percent of the children have the condition and will have a second child affected.
Is The Term Autists Offensive
Most people strive to be respectful when discussing someone with different abilities. This often leads to questions about what language is appropriatefor example, is it better to say autistic person or person with autism?
Another term you may have heard and have questions about is autist. Where does this word come from, who uses it, and is it offensive? Lets discuss.
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