Image: Aspiedent CIC 2021
Autism Profiling: One small step for Aspiedent, one giant leap for autism
Jen Blacow and Elizabeth Guest
18th June 2021
Autism Profiles: An Introduction
I have found myself talking about our ‘Autism Profiling tool’ a lot recently. This is in part because I have become excited about our plans to get it ‘online’, which involves standardising it and then scaling it so that many more people across the world can benefit from it.
It is also because we are currently trying to write a book that explains the framework of the Autism Profiling tool so that other people can apply it. The keyword here is 'trying' - Elizabeth thinks far too ‘nonlinearly’ for her to find it easy to get it on paper!
I am excited because this tool truly has the potential to change people’s lives for the better in an affordable, accessible, and quality-managed way.
But it is a work in progress.
What is the Autism Profiling Tool?
The Autism Profiling tool is a system/framework that we use to get underneath a person’s outward symptoms of ‘neurodiversity’ (e.g. autism, ADHD), to the underlying causes of these outward symptoms.
Outward symptoms are things like:
- Preferences - extreme likes/dislikes (environments, textures, sounds, etc.)
- Preferred study areas/hobbies/interests (often extreme)
- Difficulties that led to a diagnosis (e.g. poor social skills, strange ways of moving/talking, inability to keep up with the development of peers).
Underlying causes of these symptoms include:
- How a person’s senses work (e.g. sight, touch, hearing)
- Styles of thinking (e.g. visual, linear, 3D models, word-based)
- How the person learns and processes information
- Executive functioning issues (e.g. organisation, inhibition, concentration)
- Being over-sensitive to the emotions of others and/or your own emotions.
An autism profile is created by linking the surface symptoms and underlying causes together in such a way that the resulting autism profile explains all a person’s difficulties and strengths. This depth of understanding for an individual is often life changing as it enables them to understand why things have gone wrong for them and provides a way of moving forward into the future.
For example, many autistic people struggle with change. When an assessment is currently done on such a person in school or example, the assessment only usually goes as far as “this person struggles with change, therefore this person should be given plenty of notice to manage changes”.
However, many different reasons may underlie, (be the root cause of), their difficulty with change.
When doing an Autism Profile on somebody, we are looking for the key difficulties that explain all the surface difficulties and strengths.
It could be that the person who struggles with change has fragmented visual perception and therefore if a little change is made to their environment (such as changing rooms), their whole picture of their day changes too, causing extreme anxiety.
Or it could be because the person has slow processing issues. It could take them so long to for their brain to register that there has been a change to their schedule, that they appear to ‘ignore’ the change and continue with their previous schedule or they become so confused they are unable to continue at all.
Of course, it could be a combination of both but knowing the cause enables a programme to be put in place to enable the person to (gradually) cope better with change. Surely this is better than simply assuming that they are unable to learn to cope better with change!
Why is the Autism Profiling tool so important?
Understanding the underlying reasons for the outward issues is key to knowing what aids/intervention you would recommend for a particular person.
In the example above, the recommendation you create for the first person who struggles with change would be different from the second one, as the underlying issues are different.
For the first person, you now know that you need to put things in place to ensure that unfamiliar environments are not sprung on them, or that if this is unavoidable then there is sufficient support in place to help them adjust – such as giving them extra time to explore the new environment.
For the second, you would teach problem solving skills and explore what the person should do under certain scenarios that may occur unexpectedly. This will equip the person to deal better with sudden unexpected changes, but also to be less rigid in their thinking regarding changes that will occur within the next minutes or hours. This will also enable the person to be much less rigid in their plans and to be able to adjust their plans for the future.
To give an example, we work with someone who struggled badly with change because of very slow processing. After teaching her how to think and how to problem solve, she was able to bring forward her plans to move house quickly when better accommodation became available. This would have been virtually impossible for her before we started to help her. A side effect of this work is that this person is now able to have real conversations with people and her relationships with her family are much improved as a result.
Without understanding the underlying reasons for the issue with change, it is extremely hard to know what strategy would work best! You could spend years trying different strategies, only to find that what you are doing makes things worse.
If you have created an autism profile for a person, you can get straight to the heart of the matter and provide a helpful solution quickly and much less traumatically. It can be very traumatising being given adjustments that are not appropriate for your actual issues, and also very damaging to receive a one size fits all approaches to problems just because the outward ‘symptom’ is the same.
This is the basic concept of our Autism Profiling Tool. The above examples are fairly straightforward. However, issues can get quite complex and some will be explored in more detail in the book.
Our idea is to share this tool so that anybody with autism or neurodiversity, or someone who is supporting somebody with autism or neurodiversity, is able to create an autism profile for themselves or others. Using the autism profile they should then be able to determine which strategies are best suited to them or an individual they are helping or caring for.
If the situation is too complex, then we will be on hand to help out (probably for a fee).
We have worked with many autistic/neurodiverse adults who have never got close to their potential in life because they have never understood exactly what their underlying difficulties are.
After an autism profile has been created for them, they are able to piece together why they have the symptoms/difficulties they have and can begin to move forward.
Ideally, people need to get an autism profile in childhood before they go out into the world of work/adult life, etc. Ideally this needs to happen at the latest before they make choices after GCSEs.
This is so that they can avoid making mistakes in terms of study and career choices, which are incompatible with their underlying difficulties (profile). Instead, they can find something they both excel at and will be able to cope with despite their autistic difficulties.
Note: they will develop from childhood over time so top-ups may be necessary.
This will save so many people so much heartache and grief further down the line when things inevitably fall over for them. It will also enable more financial security.
If we can scale it and make it more accessible, this could potentially change millions of lives. It is cutting-edge stuff.
Currently, we have to administer these profiles in person and it takes many hours of work and comes at a price. We cannot do more than perhaps four a month, at a push.
The potential benefits of scaling this tool are massive. They include:
- Far quicker diagnosis of actual issues and implementation of correct interventions, than ever before.
- Linked to this, having actual issues addressed as opposed to ‘trial and error’ techniques, therefore avoiding the trauma of unsuitable autism interventions.
- The ability to individualise the approach to making recommendations for autistic/neurodiverse people, but on a large scale therefore it is cost-efficient.
- The profile report, which is produced can be shown to teachers, employers, and even trusted and reliable peers so that the autistic person can get off to a better start when making new relationships with people in mainstream environments.
- This ability to inform exactly what software is likely to help, rather than a one size fits all approach to prescribing software. For example, mind mapping is often given as a standard for everyone. This is OK for people who can see the bigger picture but inappropriate to those who work from the detail up. Currently, any ‘neurodiverse’ issue at a disability needs assessment gets met with one solution - mind mapping! This is unless the individual knows and is able to tell the assessor what their difficulties are and what they need, which they would if they had their profile to hand.
- The tool can be used on everyone and will work for anyone, not just autistic people
- The tool could be used first to identify whether it is worth somebody going for a diagnosis of autism, for example.
- The tool can separate actual symptoms by their cause. I.e. It can separate issues to do with personality (usually trauma-related) and cognitive and sensory issues (not usually trauma-related).
- For the right reasons, you could even administer it to somebody else without telling them, by answering questions based on your observations of them. This is so you can get a rough picture of how to work with them better/what might be causing someone’s difficulties.
Where are we at with development?
The tool has been designed and used by us for some time. What we need now is to get it out of Elizabeth’s head and into a format that can be utilised by other people.
The idea is to deliver training on how to administer the tool once it is available for people to use.
We have started developing an online system for one aspect of the autism profiling tool (the sensory checklist), which is somebody else’s work - that will be put online for free. The person who designed this is consulting with us in this process.
When we have done this, it will be time to start putting the rest of it online, so as to have the complete autism profiling tool available as a product.
What do you think and can you help us?
What do you think? Does this sound like a good idea to you? Can you see the value as we can? And do you know anybody who can help us?
We are likely to need funding and support to get this off the ground. Therefore, if you know anybody that might be interested in investing in this or helping us make this dream a reality and ultimately making millions of people’s lives better, please let us know.
We would love to be in a position where we could let this tool do its job online, whilst we make other big jumps in whatever work we choose to apply ourselves to. This might not be in autism, it might be something else, but it will almost definitely be focused on helping people or will go towards the social good. For example, Elizabeth would love to be involved in creating learning materials for people who think in a wide range of different ways.