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.

 

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Teaching and Learning with LEGO

Parents and teachers of kids with Autism Spectrum Disorders (ASD) including myself, are always looking for different ways and materials to teach many different skills. We want their learning to be as exciting as it is informative to them. In all of my years of working with pupils with ASD, there hasn’t been an equipment/tool most effective than Lego. First and foremost, there are very, very few kids who do not like playing with, or even looking at Lego. They are brightly coloured blocks which is usually associated with FUN and PLAY; not school/ learning. Its association with fun is the most important thing to remember, especially (but not exclusively) when the children are really young, since the lessons can be disguised as play (remember this when your students aren’t cooperating in structured lessons).

So what lessons can we teach them through Lego?

Sorting

Through Lego, we can teach kids with ASD different ways of sorting and grouping things. Lego can help reinforce the lessons they have learned in school. They can sort the pieces by colour, sizes and shapes. Of course, we could extend this by giving them say, 5 pieces and asking them which one is the ‘odd one out’.

We can also use the Lego men and women to teach gender. A lot of young individuals with Autism that I have worked with initially struggled with identifying the gender of their peers, and having them inspect the (potentially) non-threatening plastic faces of the Lego characters have helped them greatly with this issue. Identifying a Lego figure’s gender is of course very different to identifying a real person’s, but learning through these plastic figures is a major step that needs to be taken forward.

 

Counting

Learning to count is always easier when you’re counting something you like. Having children count the pieces that they have or counting with them can help reinforce numeracy skills. Asking questions such as ‘how many wheels does that car in your hand have?’ or how many trees do I have in my hands?’ can be a lot easier for them to answer compared to worksheets. Also, They can put Lego pieces together to build the numbers (see picture on the left).

Fine Motor Skills and Coordination

Many children with Autism have developmental delays in motor skills and coordination. Playing with Lego can help improve these skills. Having them manipulate those blocks by putting one on top of the other and taking them apart can help train their finger and hand muscles to great effect. Also, by using both hands while playing, their coordination could improve. 

Social Skills:

Expressive and Receptive Language

Playing any type of games can help develop children’s language. Expressive and receptive language can be improved by regularly asking questions about the game/ pieces that they have. Also, emplying what Speech and Language Therapists call ‘Sabotage technique’ wherein you withhold something that they want until they say the correct phrase of asking for it (e.g. ‘please may I have the black wheel for my car?’). They can also be explicitly taught to follow instructions while playing.

Sharing 

‘What’s mine is mine’ is often one of the biggest problem parents have with their children. Parents can teach their children how to share by playing Lego with them and modelling different ways of sharing and compromise. Explicitly saying ‘it’s your turn to pick a piece’; ‘it’s OK if you have that piece’; ‘I’ll have this piece instead’ or ‘thank you for giving me this piece’ can help build up the children’s vocabulary, whilst learning what sharing means at the same time.

Imagination and Planning

It may be a hard task to teach a child how to imagine something, but giving them a platform to do so will help stimulate their imagination. Asking them to build a blue tower or a green and white house gives them a chance to both imagine what the house or tower would look like and how they will do it. These abilities vary from one child to the next and tailoring each task to an individual’s skill set is definitely necessary.