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.
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.
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.
Seinfeld recently revealed that he thinks he is on the Autism Spectrum in an interview with Brian Williams on NBC’s ‘The Nightly News’. When asked about why, he said that he is ‘never paying attention to the right things, basic social engagement is really a struggle. I’m very literal. When people talk to me and they use expressions, I don’t know what they’re saying‘.
While his revelation may seem positive because of his acceptance of this possibility, I believe that his explanation of the ‘markers’ shows how limited his understanding of Autism is. Sure, he did not shy away from admitting that he may have Autism – a way of saying that having Autism is not a bad thing, but his description is deeply problematic.
His description is a negative one- it included what could be wrong or what one may see as ‘dysfunctional’ in people with Autism. I have always believed that while it is important to acknowledge what people cannot do, it is more important to highlight and focus on what they CAN DO. In addition, the seemingly negative things that he outlined can be seen as positives. ‘Never paying attention to the right thing’ all depends on what one thinks ‘right things’ are. In my experience, people with Autism are exeptionally brilliant at focusing on fine details – the ones that people without Autism cannot see.
Social engagement is not always a struggle. Again, this depends on who is interacting with the person with Autism. Having an open mind goes a long way. Also, I have met people with Autism who have more confidence in public speaking than me.
Being literal, or not understanding sarcasm or implied meaning in language may be seen as a weakness, but trust me, this skill can be taught. The same goes with expressions.
My other issue with Seinfeld’s description is the lack of acknowledgement that people with Autism differ from one another. If you’ve met one person with Autism, you’ve met one person with Autism.
While it may seem like I am attacking Jerry Seinfeld, please be assured that I am not. I just want to explain the improtance of being aware of the complexities and the positives of having Autism. More often, I speak with people who only know how to describe Autism by outlining the negative behaviours and the things they cannot do. I think it’s time to stop that trend. I want us to focus on what they can do and what is great about having Autism.
A mother and his son in Australia is seeking help as they are about to be deported on the sole basis of his son having Autism. The boy’s mother, Maria is a nurse who have lived and worked in Australia since 2007. Upon applying for a visa renewal, the government denied her as her son, who has Autism, is deemed to be a burden to the health care system. (Click HERE to read more on their story)
Please help them by signing this petition. Please.
A recent research conducted by Becerra et al. (2014) has found that children whose mothers were born in the Philippines, Vietnam, South and Central America, and Africa were more likely to be diagnosed with Autism compared to the children of US-born mothers. The research revealed that 7,540 children who were born in Los Angeles County between 1995-2005 were diagnosed with Autism. Compared with children of US-born mothers, the risk being diagnosed with Autism is 76% higher in children of African-born mothers, 43% higher in children of Vietnamese mothers, 26% higher in children of Cntral and South America, and 25% higher in children of Filipono mothers. The researchers have also found increased risks of mental retardation coupled with Autism in the children of foreign-born mothers.
Becerra et al. (2014) suggested that there could be a number of factors that could cause the trend that has been found including highly stressful experiences by the mothers, exposure to viruses, trauma or violence. However, they acknowledged that more research should be done in order to investigate different factors that could affect immigration, and identification and diagnosis of Autism.
Adam Silver and the NBA made an incredible gesture by drafting the former Baylor Bears standout center, Isaiah Austin. Austin has been rated quite highly by NBA scouts and was expected to be picked last night. However, a few weeks ago, he was given a career-ending diagnosis of Marfan Syndrome (what is Marfan Syndrome?).
The NBA draft could have carried on without Silver’s tribute to Austin, but he did it anyway. Silver and the NBA has at least fulfilled Isaiah’s dream of being drafted, even though he will not be able to play a single competitive basketball game again. It speaks volumes on how the NBA wants to be on the forefront of promoting positive attitudes towards everyone in society. We can all remember Adam Silver’s press conference during the heat of the Donald Sterling controversy, right? That and last night’s gesture is an amazing display of compassion, inclusion and a move away from the old, horrible attitudes.
I love it.
Thank you, Mr. Silver!