By Desiree Kaur
In the last 6 years, I have attended my fair share of parent trainings on autism. Some were expensive, some were free and some more affordable. So, when my friend nudged me to join the SPELL Framework training, I was a little hesitant at first. My thought was, how different is it going to be? And then, I reminded myself of the very thing I keep repeating to others, “No one person can know everything there is to know about autism.” Thus, I joined the 2-day training titled SPELL Framework: Understanding and Responding to Autism. It was held on 12 and 13 July 2023, at Toy 8 Playground in The Gardens Mall.
How is SPELL different from other trainings?
Each training, approach or modality has it’s benefits. There is no one approach that is the perfect fit for a family or particular person. Most often, an individual may require a combination of different approaches or styles. With SPELL, there are some rather obvious uniqueness to it.
It is a framework, not an approach
The Oxford Dictionary defines a framework as “a basic structure underlying a system, concept, or text.” SPELL is this, exactly. SPELL is an acronym (which will be covered later); but in essence, it is a framework designed to complement other approaches, style or modalities. It is quite wholesome as a framework which looks at the autistic person in their entirety rather than from their diagnosis or a deficit first approach.
Developed alongside autistics
How many approaches can boast this? The Tizard Centre worked very closely with autistics to develop this framework. Not only has the framework looked at theories from the past and present, it also places a high value on the lived experiences of autistic individuals.
The content is delivered alongside autistics
Part of the requirement from Tizard University is to have autistics co-facilitate the training sessions. In fact, in the session I attended, there were autistic attendees as well. The autistics shared based on their lived experiences and are considered subject matter experts when delivering the content for the SPELL Framework.
SPELL prioritizes the needs, preferences and rights of the autistic person
Most trainings I have attended, tend to look at the diagnosis first. Where the diagnosis is concerned, it still very much goes by a “deficit first” approach. Meaning, there are always checkboxes of what has not been achieved in accordance to chronological age. SPELL, looks at the person first and takes into considerations the persons likes, preferences and sensitivities.
What does S P E L L stand for?
It is indeed an acronym which fully encapsulates how to create an environment where a person with autism can thrive. It stands for Structure, Positive Approach, Empathy, Low Arousal and Links.
S is for Structure
Structure is so important to autistics. It helps them process and navigate this overstimulating world a little better. Firstly, the terminology used here is respectful. Rather than using words like stereotype or rigidity, structure is an appropriate way to describe, how we can make things a bit better for our friends with autism. Part of structure includes the use of Augmentative and Alternative Communication (AAC), be it high or low tech and ensuring necessary accommodations are made so the autistic feels safe wherever they are. Yes, safe – because an overstimulating surrounding or situation is something they may take a long time to recover from.
P is for Positive Approach
One would think a positive approach is self-explanatory, but not quite. In a world where behaviour modification is still heavily promoted as “treatment” for autistics, a positive approach warrants some explanation. The positive approach, must be deemed positive by the autistic. For example, if your autistic friend finds being hugged a violation of their personal space, then hugging them as a greeting is not a positive approach. Positive approach also takes into accounts our words – what we say and how we say it. Especially for our non-speaking children and friends, just because they don’t speak it does not mean they do not understand what we are saying.
E is for Empathy
Do we really still think that autistics lack empathy? I sincerely hope we can put this debate to rest. Just because we don’t interpret their reactions as empathy, does not mean they do not feel it. This works both ways. We in turn, need to show and model empathy to our children. How can a child expect to be empathetic if they have not experienced it? How can a child be empathetic, if it has not been modeled to them? Telling a person who is flapping their hands when they are self-regulating, “quiet hands” or “hands down”, is not being very empathetic.
L is for Low Arousal
Low arousal means different things to different people and in different settings. So, in a home environment it is recommended to take into consideration the persons’ sensory sensitivities and ensure the environment makes them feel safe. Likewise, in a classroom setting. Having a wall or room full of pictures and visuals may looks nice to a neurotypical brain, but can be overwhelming for someone who is autistic. The low arousal, ideally takes into account all of the senses.
L is for Links
Links is where the autistic person is involved in the decisions made for them. While it is easy for parents (like myself too), to assume that we know best for our child, is setting ourselves up for some kinds of disappointment in the long run. We talk about self-advocacy, and it starts from the time they are children. Links means ensuring all parties involved in the the daily life, learning and therapy the person goes for, are constantly connected and in sync on the structures and approaches. Most importantly, the autistic must be consulted on what they want for themselves. This is where I find SPELL to be rather unique. While other approaches may imply this, but it is rarely said explicitly that the autistics choice should supersede everything else.
The attendees
Attendees for the SPELL Framework training on 12 and 13 July 2023 brought together quite a diverse range of attendees. Amongst them were medical doctors, early childhood educators, a horse manager and riding coach, service providers, autistic self advocates and of course – parents.
Also in attendance in their capacity as parents were Khairy Jamaluddin, former Minister of Health and his wife, Nori Abdullah, Co-Founder of We Rock The Spectrum Gym. Khairy is responsible for spearheading the proposal to form a National Autism Council whilst he was Minister of Health, and plans to see this through are currently underway. Nori, through the We Rock The Spectrum Kids Gym, has made available Therapy Through Play trainings for parents in B40 families, free for the last 4 years.
Also in attendance were personnel who work at the Toy8 Playground as they attempt to understand the needs of children with autism, to provide inclusive services to all who patronize their playground. It was truly encouraging to see the diversity of attendees which goes to show, that inclusion is something most of us really want.
In conclusion
The trainer, Dr Zahilah Filzah Zulkifli is a Consultant Paediatrician at Hospital Sungai Buloh. She pursued a Master of Autism Studies with the Tizard Centre, University of Kent and is an Advanced Certified Autism Specialist and licensed SPELL Lead Trainer. The session I attended awarded attendees who completed the full two days with a “Licensed User” certificate. To find when and where Dr Zahilah will be conducting more SPELL trainings follow her on Instagram here or follow The Ark here.
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