We all have the right to say what’s in our minds. However, we should always carefully consider the repercussions of our words. Words can empower, but they can also hurt. Take for example the inconsiderate and vile tweets by Katie Hopkins – a British television personality and columnist:
I really wish Katie would think before she speaks/tweets! Nobody in their right mind should utter, much less appreciate, these kinds of comments. Sort yourself out, Katie!
I am angry. VERY ANGRY. 1 in 88 people in America has a diagnosis of Autism and yet this still happens??? How could they do this?
I understand that not everyone would react in a similar way as these crew members, but I am horrified at their ignorance. I am also aware that the crew’s priority at times like this is to diffuse the situation (if it escalated) in a calm manner. One may argue that they did so by giving the girl some hot food, but they should have left it there. They should not have landed the plane and kicked the family out ‘just in case’ the girl had a meltdown. This is utterly disrespectful. The crew members should be punished for this.
This highlights the fact that people do need to be more aware of what Autism is, how it manifests and how to interact with people who are diagnosed with it.
Below is a video of Jake Barnett in 60 Minutes. He is a Maths and Science genius and he also has Asperger’s Syndrome. I first knew of Jake Barnett through reading his mother’s book, The Spark, which is about the ups and downs that their whole family experienced mainly due to Jake’s Asperger’s. Most of his first teachers did not understand him. His family, especially his mother, fought long and hard to get the best education for Jake. Kristine (Jake’s mother) knew what Jake needed. She knew that Jake’s ceiling is much higher than what professionals have told them. Through the family’s hard work, Jake has ‘come out of his shell’.
We have all heard of #thedress, right? The dress pictured above caused a world-wide frenzy when it was posted on social networking sites. Some claimed that the dress was white and gold, some (like me) were adamant that the same dress was black and blue, while some say it’s blue and gold. Some people have also claimed that they sometimes see white and gold, but can also see it as blue and black at times.
People have argued for days and eventually settled that although the dress was in fact black and blue, we all see it differently. The video below explains why:
Accepting diversity
So how is it that we can accept the fact that people see this dress differently to us, but cannot accept that other people ARE DIFFERENT FROM US?
Why is it so hard for some to accept people from different ethnicities, socioeconomic status, abilities, different sex and sexual orientations?
Isn’t the greatness of this world due to our diversity?
I know I am talking about a small proportion of society who has yet to open their eyes. I am hoping that by using a popular example such as #thedress will help them understand what I (and many others) have been talking about for years.
Talking about Autism in professional contexts should be done with utmost sensitivity and respect towards the individuals with the condition and their families. Having sat through assessments, consultations, education and health care meetings, annual reviews and planning meetings with familes and professionals, I have learned lessons of what to do and what not to do when it comes to talking about the said subject. I am aiming, through this article, to share with you what I have learned over the years.
1. It’s not an epidemic and no one is ‘suffering’ from Autism
Despite what the figures suggest, I do not consider Autism as an epidemic – it has been around for longer than we all think and we just got better at identifying it.
I would try to avoid using any negative terms at all when talking about Autism. Someone HAS Autism, but he/ she is not suffering. I prefer to call Autism as a condition, not a disorder or a disease.
Please note that I do not want you all to turn a blind eye on the difficulties that the individuals and their families are having at any point. Absolutely not! I urge you to acknowledge that. What I want you all to understand is that whatever it is that is happening now can be changed. Focus on what can be done (realistically) to make their situations better.
2. Individuals with Autism; not Autistic individuals
The jury is still out with this one – some actually want to be identified as ‘autistic’, as it is a major part of their identities, while some would like to be referred to as (for example) ‘a girl with Autism’. I always use the latter one, unless corrected by the individual or the family. I feel that by referring to them as ‘individuals with Autism’, I am acknowledging that there is more to them than having a diagnosis – that Autism is only a part of who they are. By doing so, I believe that I am opening up the opportunity for others to truly discover who the person really is as a whole.
3. Avoid using ‘High/Low Functioning’ and ‘severely/mildly Autistic’
I myself am guilty of this until recently. First of all, I know that levels of functioning depends (in a large part) on the individual’s IQ score. However, I began to understand that IQ is only a part of who they truly are.
I understand that levels of functioning may give professionals and parents a common language/ reference point to which they can base an individual’s set of abilities. But I feel like this should be avoided as it is misleading. I have met many people with Autism who have overall IQs of less than 70 but are amazing in specific things. One may be ‘low functioning’ but it does not mean that they cannot (or are not) good at something.
What I find helpful is to look at the overall picture. Try to understand every context, every behaviour, every aspect of the individual’s life. Then, if you need to talk to the individuals with Autism and/ or his/ their families, you should pinpoint the areas in which they have strengths and the areas in which they need to improve. Not only will you be able to offer a much better informed solution (if that’s what’s needed), you may also make the families feel that they were listened to.
4. SHUT UP AND LISTEN!
As professionals, most of us are eager to offer advice. But having spoken to a lot of families over the years, what they appreciate is being listened to – genuinely and empathically. I advise you to take a step back and listen to what they are saying before speaking or making your mind. Clarify what you heard and don’t be afraid to ask questions to ensure that you truly understood what they meant.
5. No two individuals with Autism are the same
I know that you all may have read/ heard this before, but I want you to always keep this in mind. No matter how many people with Autism you have met, the next one would be completely different from the others. Never assume that you already know what to do. I suppose if you want to stay true to this advise, you would follow number 4.
Final comments
All of what I have said may not be a unique revelation to many of you. However, I feel like I owe it to the Autism community to remind you (and myself) of all of them. I know that we all want the best for the people we work with, which is why I am confident that the Autism community is in safe hands.
Please feel free to contact me and/ or leave comments if you wish to discuss anything further.
I can’t remember the last time I bragged about people following me on Twitter, but it’s Dr. Temple Grandin!! I’ve admired Dr. Grandin’s work for a very long time and she has has been one of my inspirations throughout my adult life, so you can’t imagine my excitement when she follwed me!
Click HERE to watch Stephen’s story.
“Stephen has Autism, and has a history of displaying behaviour that challenges. Living at home with his parents and 2 siblings, his family were able to manage Stephen’s behaviour by implementing Positive Behavioural Support. When Stephen left the family to go to School his behaviour deteriorated and he was sent to a hospital, which has now become his permanent home.”
Stephen’s mum, Leo wants him back home. He is currently stays at a Psychiatric Ward 24/7. He is not getting the support and affection that he needs- both of which his parents are able to provide. Leo is campaigning to bring Stephen home. Help her by signing her petition HERE
There are a lot of definitions of Autism around in books and on the internet. But none, including mine, has captured the whole essence of Autism- from its nuances to the best available research evidence and observational data- better than Nick Walker’s.
Click HERE to read it.
What do you think?
Does your definition of Autism differ to his? Let me know!
Yes. It’s another book about Asperger’s Syndrome/ Autism.
Yes, it is a positive one.
I know, not everyone with Autism/Asperger’s are the same.
Yes, I recommend it.
It’s about a parent who accepted that her child is different but rejected others’ advise to allow this difference to become debilitating. This is about a parent and child’s amazing journey in life where they allowed Autism to be a part of their lives. They accepted it, lived with it, and saw its positive side.
Understanding and Embracing Diversity 