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Dealing with autism?

2017

Hello,
 
I am a second year student at Mount Royal University in Child and Youth Care Counseling. I am doing my year long practicum at a school that works with Autism and behavioral and mental disabilities. I have been there now a few weeks and am still figuring out how best to approach the situation.
 
I have talked with fellow colleagues and teachers and there has been talk of learning new things such as hand signals and using less words to get points across. I have been trying hand signals and less words and there has been progress however I would like to know more.
 
So my question is what ways can I prepare myself to handle children with autism in the most effective and caring manner? And how to become more comfortable around non verbal communicators while not crossing any lines?
 
Matthew
...

Matthew,

Autism and CYC practice is a very important area to discuss and I think you may find these resources helpful:

*Nancy Marshall's article from RCYC (Volume 30, issue 2) on Disability Rights. She's included a lot of valuable information on our field, disability rights and autism.

*I've also written two pieces on CYC work and autism which can be found on CYC-Online. One is called CYCs and ASDs: http://www.cyc-net.org/cyc-online/dec2015.pdf#page=64 and the other called BIDing and Autism: http://www.cyc-net.org/cyc-online/aug2017.pdf

Happy reading.

Yvonne
...

Hi Matthew,

Thank you for posing this question. I always appreciate when people who don't identify as autistic ask for suggestions. I want to clarify that I am also autistic, and I do a lot of mentoring work with other autistic people (of many ages and presentations)!

The best place to start in any relationship with autistic people, is to become educated about neurodiversity. Basically the movement is built on the idea that some brains (and bodies) are wired differently, and that it's totally okay. Within the human species, we see a lot of biodiversity, so it makes that brains can be just as variant. So, autism isn't inherently a deficit. If you'd like to read more on neurodiversity, Nick Walker is an autistic advocate who runs a pretty great blog: http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

Another thing I feel is very important to stress is this: autism is not a behavioural issue. Yes, autistic kids do exhibit behaviours that are different than allistic (non-autistic) children. But the behaviour that we target is often just a sign of distress. While the source of distress may not be apparent or visible, I promise it is there. The reason it may not be obvious is because, you know, your needs aren't the same as that child's. Not all triggers are universal, right?

Attempting to change behaviour does not alleviate the distress. While it can be helpful to come up with different coping mechanisms, it can also be a band-aid solution.

Some common things that can cause said distress include:

-surprises or unexpected changes (and lack of warning for upcoming change)
-sounds, sights, smells, etc. – even if they don't seem obvious
-lies or going back on agreements
-uncomfortable body sensations (aches, pain, etc)
-being made to do things they are not ready for, or have the attention/drive/energy to do
-being misunderstood

The running theme here, is that autistic people have a very specific, vivid experience of reality. We often live our lives being told – directly or indirectly –that we are exaggerating or imagining things. So, we hold onto the details of our external world very closely. When these details change or become no longer comfortable, it can be overwhelming!

For example: if I am suddenly being asked to wash the dishes without warning, I become agitated and drained. I find it mentally and physically exhausting, so I have to prepare myself for doing it. If I'm not given adequate time to do so, my distress is tripled. Not only do I now suddenly have to do something that is hard on my mind and body, I have the additional load of trying to figure out how the heck I'm gonna handle it now . . . all while trying not to freak out about it. My brain is instantly downloading new information of "I have to do the dishes now", like a computer update I didn't ask for suddenly shutting off all my running progams to make room for itself.

Autistic minds and bodies have different needs, of course. I would agree that using less words is best, but only if that individual child is overwhelmed by verbal/auditory stimulation. I use this formula as my go to: am I giving instructions? Is the task unpleasant or uninteresting to the person? If yes, the fewest words possible are probably best.

If you're working with autistic young people, you may already know what stimming means. For anyone who doesn't, it's the term for the self-stimulating/soothing behaviours autistic people do. And wow, I can't emphasize how important it is for our well-being. These behaviours come naturally to us as an automatic function that keeps us going. As long as the stim isn't harmful, please do not interrupt the stim! Actually, I would encourage stimming. Why? Well, as someone who passes as allistic, I have learned to repress a lot of my stims because of the stigma that surrounds bodies moving in "weird" ways. Stimming is autistic self-care; it is giving the body permission to operate in ways that are healthy for it, and allowing it to let go of the shame we feel for being ourselves.

Ask the autistic child, in whatever form of communication they use, what would help them. Kids often have such great insight into what they need to thrive. We often think we have to teach autistic people how to handle themselves and the world, but we seldom think to even ask. Sometimes the answers will surprise you; sometimes it is the people around that child that must be taught how to handle them. Being so unique and misunderstood in this world is a certain kind of trauma. Being trauma-informed, instead of pathologizing, is just as (if not more) important for autistic young people.

If you honour the core principles of CYC practice – meeting them where they're at, doing with, not for/to, all that goodness – you should do wonderfully.

If you have any further or specific questions, feel free to reach out.

Sincerely,

Falon Wilton

Hi Matthew,

I've worked with children with autism for several years and am beginning a Masters degree with a specialization in ASD. While every school has their own strategies and protocols for students with developmental disabilities (often outlined in IEPs), I have found success in using visuals. Visuals can be used in combination with verbal instruction (i.e. "We are going to the playground" while showing student a visual of the park) or on their own (i.e. a visual schedule). Having a visual provides a concrete example when students have difficulty with receptive communication (understanding). Visuals can also be helpful when interacting with non-verbal communicators as it can give them a voice. Offering the student access to visuals and providing them with opportunities to give them to you (i.e. Student handing you a visual of food means they're hungry).

My advice around how to be more comfortable around non-verbal communicators is to be aware of their limited communication abilities but to still provide as many opportunities to be inclusive as possible and treat them as you would other students. It's important to remember that just because they don't talk doesn't mean they aren't aware of their surroundings and what other people might be saying. It is also important to be more in tune with their body language as you will be able to tell how they are feeling and some of their needs based on non-verbal communication.

Hope this feedback helps!

Kind regards,

Bethany


All of that is important. I found visuals worked very well. I worked with one EA who turned the visual schedule Into a I pad program and you clear the schedule as you go. Also be consistent. 

Sean N.

Hi Matthew,

Well, I was about to pipe in that the advice from my esteemed peers Falon and Yvonne would be very valuable here. I see they have beat me to it! I refer you to Falon's very important advice and the articles Yvonne refers you too.

I will also leave you with this- our language and labels speak volumes. I am absolutely certain you are a caring and wonderful CYC practitioner, as am I. Sometimes we are not aware of the impact of our words. I used to say things like "she is struggling with autism", "how do I manage them?", etc. When we say things like "handle, deal with or manage them", we are 'othering' them and perpetuating the stigma that they are exhibiting behaviours due to their 'unfortunate condition or disorder'. This is not true. Nor is autism unfortunate. As Falon said, their behaviours come from distress. But they also come from our well-intentioned, oppressive practices that persuade them to conform.

Everything you need to know about caring for autistic young people is within the 25 characteristics of Child and Youth Care and the BID model (*see Yvonne's article). Trust yourself, your instincts, and your CYC skills. Most importantly, listen to them. They do not need to be verbal for you understand what they are trying to tell you.

Nancy

Bethany – your points around visuals as a means to communicate are very important. I would like to add that learning and teaching basic sign language is an incredible tool as well. Read any of Leon Fulcher's words about being culturally safe and inclusive will give you a very nice CYC perspective that can be applied to autism. Looking at autism as a culture, rather than a disorder, can transform your whole practice!

My only word of caution with visuals is make sure the child knows what the visual means. I have seen some Picture Exchange Communication Symbols (PECs) that are very vague- like "help me" or "play" or "friend" that were drawn by non-autistic (allistic) adults and may really make no sense to an autistic young person. I prefer to use real pictures. If you are into using tablets and phones- there are apps you can download that let you import the pictures for immediate use. For example- https://itunes.apple.com/ca/app/first-then-visual-schedule/id355527801?mt=8

Falon – I loved your last paragraph ending with: "Being trauma-informed, instead of pathologizing, is just as (if not more) important for autistic young people". I would definitely agree it is more important. I feel this is particularly true when practitioners are brave enough to look closely at our own practices to ensure we are not perpetuating their trauma by asking them to conform without reason.

Great discussion. I hope some of this helps Matthew!
...

A number of you, in this discussion thread, have mentioned that the Characteristics of a CYC Approach, or the core principles of CYC practice, offer help / support for those working with people with autism.

It would be wonderful to read an article which connects the Characteristics of Relational CYC Practice with your experiences with the people with whom you work. And yes, I have read Yvonne's article on Bidding and Autism (awesome) and Nancy's writings (also awesome, indeed!)

So, what about it – how about some of you getting together to write such an article – it would be a gift to the field.

Nothing like a public challenge, eh?

Thom
...

Hi Thom and everyone,

Well, my classmates and I started one in the Fall that just needs to be tidied up as we have learned so much since then. Stay tuned!

Nancy
...

Well, I do love a good challenge.

I recently did a presentation that touched a bit on this  – but it would be really cool to explore what engaging with autistic young people, as CYCs, can look like. Instead of intervening to correct behaviour or creating allistic-centred "teachable moments" ... what if we educated ourselves on the neuro-culture of autism? What does autistic bonding look like?

Nancy, Yvonne  – I'm sure you have some excellent ideas, too!

Thanks for the prompt, Thom :)

...

Hey everyone,

Sorry for the delay, I've been doing a bit of globe-trotting this summer!

I am grateful for this conversation and the amazing dialogue going on from everyone. I think when it comes to autism, CYCPs have a lot of ground to cover but many of us are starting to express how important it is to value and respect those who identify as autistic. I think it's especially important that we listen to what the autistic community is saying about their preferred language, approaches and skills...we don't do this nearly enough! Relational CYC work and Neurodiversity blend so well together...let's make sure we're implementing these philosophies as CYCPs in the autism field. I believe these approaches are the best way to build strength-based relationships with autistic children and youth, and they follow an anti-oppressive and anti-ableist model.

Thom, your enthusiasm for where the conversation could go inspires me... hopefully we can meet your challenge!

Thanks everyone,

Yvonne
...

Falon,

Your idea on on neuro-culture and autistic bonding sounds brilliant. I would love to quote you on this in future. Your perspective as an autistic CYC is such a value to our field. Thank you for taking the time to join us in this conversation!

Nancy
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