In the name of Fear… of Autism

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.

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Rosie King’s TEDMED talk about her Autism

A Professional’s Guide to Talking About Autism

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.

 

That moment when…

 

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!

Towards an improved understanding and acceptance of Autism

Today’s Daily Prompt: What change, big or small, would you like your blog to make in the world?

I want my blog to add to the growing sources of information about Autism. A lot of people with Autism are misunderstood since much of the popular beliefs about the condition is influenced by the media and out-dated studies. While a lot of these sources are correct and positive, they often fail to account for the differences between individuals with Autism.

Having worked with, taught and befriended people with Autism, I have become aware that Autism manifests differently. Each individual with Autism has his/ her own set of strengths and areas of needs that are unique to them. This reality tends to confuse people with little or no experience of Autism- ‘how can they have the same diagnosis but be completely different from each other?’ To be honest, I don’t know why this is the case. Nevertheless, what I found useful was to get to know each individual and respond to their needs and strengths accordingly.

By sharing my opinions, what I have read, listened to or watched, maybe I could increase people’s awareness, understanding and acceptance of Autism.

A gentle reminder

 

…or unless SOCIETY tells them not to.

A Story That Needs to Be Told: Stephen Andrade-Martinez

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

Worst Teaching Assistant in the world?!

43 year old Teaching Assistant Rachael Reagan has been found guilty of Child Cruelty after authorities have found that she has been abusing a seven year old girl in school.

It has been reported that Rachael taped the child to a chair, shut her in her storeroom and tied her shoes with her shoelaces. She also stuck Post-it notes to the child’s fingers to stop her from sucking them. She was also reported ti have kicked her student and called her names.

I wonder how this TA got away with doing these cruel things for ao long!

Click HERE for the full story

Employ People with Autism or Miss out!

Autism LinkFest

Autism: How new therapies are helping people with ASC – find out newly developed therapies that may help people with the condition. Be aware that not all of these therapies have been evaluated!

Food, clothes, transport, beds and ovens: the aid schools are giving UK pupils – poverty is everywhere. Schools find it difficult to ignore the signs of poverty in students, and are doing the best they can to help.

Girls and Autism – How does Autism affect girls and what can be done about it?

Preparing for Halloween – how can we prepare people with Autism for halloween?

I am not Kelli Stapleson – a brilliant piece written by a mom with unconditional love for her child

What can be done for adults with Autism? – there are not a lot of studies, provisions or help available for grown ups with Autism. The system seems to forget that kids with Autism grow up to be adults with Autism. What can be done?