Autism: Support needs, Spiky Profiles and my Experience
I wanted to take the chance to write about the levels of support and spiky profiles that are seen with being Autistic. It is a topic of importance to me as the growth of the Autistic community online increases, and it’s likely there is a percentage who are unaware of these terminologies. It also gives me a chance to share my experience as a medium support needs / Level 2 Autistic individual and to connect with other Autistic people and their experiences.
First, let's discuss support needs.
Autistic support needs refer to how much support, assistance and accommodations the individual requires in their day to day life. Currently many places will provide an indicated level of support to an Autistic person when they are diagnosed based on the information discussed in their assessment and Functional Capacity Report. This information will likely include, ability to perform self-care and home care tasks, ability in accessing the community, impacts from the need of routines, repetitive behaviours, sensory profile and special interests, and whether they require the assistance from other people (family, carers ect.)
There are Three Levels of Support, increasing in support needs:
Level 1 Needs Support, Level 2 Needs Substantial Support, Level 3 Needs Very Substantial Support. These are also often referred to Low, Medium, High Support Needs.
But in continuing this discussion further it is important to specify some myths and facts surrounding these levels.
Every level indicates a need for support. If someone is diagnosed with Level 1, this does not mean they require no support, assistance, accommodations throughout their day.
Every Autistic person is going to have their own set of support needs and accommodations that work for them and help them thrive as best they can. The aim of these support levels is not in line with the outdated language of functioning levels. There is no need to keep using “High-functioning” and “Low functioning” as they only get placed upon Autistic people based on the neurotypical standard of functioning, they are not indicative of the Autistic person's abilities and needs and no longer represent what we have learnt of the Autistic spectrum. Furthermore, an Autistic support needs are not set in stone, they are likely to change and shift throughout their life, even in a year, month, week depending on what is going on in their life, environment and other variables. Lastly, it's important to highlight the lives of all autistic people at different support levels and with different support needs. With the growing platform for autistic voices, higher support needs individuals may be overshadowed by lower support needs autistics. “Nothing about us, without us.” must include Medium/High support needs autistic people alongside Lower support needs autistic people.
This can lead into the understanding of ‘Spiky profiles’.
This term refers to the skills and abilities autistic individuals have that may not correlate cohesively or expand into all areas. This is not something that is used officially in diagnosis, in support resources ect. But it has been developed by autistic people to explain that they may have high and well developed skills in a handful of areas while lacking in skills in other areas. For example an Autistic person may be really good with language, writing and literacy but struggle with self-care and require a support worker to help them get ready for the day. This allows us to honour our skills; sharing what we love to do, understanding where we need support, and help feel more positively about our skill set. No matter the level of support an autistic person has, each person has a skills profile that is a representation of themself, and is not something to compare yourself to others with.
Now that I have discussed the topics of Support needs and Spiky Profiles, I'd like to share my honest and real experience and my profile of where I am in my life currently. As I mentioned in the introduction, I have level 2 / medium support needs which was indicated by my diagnosing psychologist. In my understanding, having level 2 support needs feels like being in a middle void between having independence and being dependent, leaving my skills profile very spiky. My support needs expand to a range of areas:
I need prompting to complete self-care and house care tasks, meaning that i shower only a couple times a week, i rarely brush my teeth, i can forget to brush my hair, it takes a lot of energy to perform these tasks especially if i were to try to do them everyday. Furthermore, I need to be prompted to complete house chores fully and there are some chores I cannot do. This is often because of sensory sensitivities and executive dysfunction as well as pathological demand avoidance.
I struggle with leaving the house by myself. There are instances where I have been physically able to, but it is dependent on different variables; is it somewhere I have been before with someone else? Do I know the route? Do I have sensory accommodations and comfort/safe items?
It also takes a huge amount of energy to do so and leads me to be exhausted, needing to rest or I can even become overwhelmed and meltdown / shutdown. Therefore it is in my best interest to have a support person when I leave the house.
This also expands into being unable to work in a standard job like my neurotypical peers. I have never been able to get a job as even an interview is too much for me. My psychologist indicated that even with support, I would only be able to work at most 10 hours a week. Because of this it is my goal to have a job that is not the standard 9-5 work; An Artist!
My support needs also include needing support and guidance in social interaction. I have deficits in my social abilities as Autistic people do, leaving me “failing” social situations. My partner will guide and direct conversations in my place when we are together and socialising with other people. Additionally, I have periods of verbal shutdowns where I am unable to speak. I make use of an e-writer to communicate, i also plan to make communication cards and have text to audio AAC app as options.
The last point i would like to share about my support needs is that i struggle with transitions and autistic inertia, i can often be driven to stay focused on one thing, stuck when it comes to changing or starting tasks, as well as having rigid thinking, being hyper focused on my special interests and overall finding it easier when i have a routine to follow. There are two things that help me when i'm stuck; a support person to guide me into the next task or if i'm alone; music, so there is something that is the same as i change tasks.
My support needs indicate the lower points of my Spiky profile; where my skills aren’t the strongest but I accept that, I accommodate that and then praise my high points.
I am a great learner! I can pick up skills pretty easily especially when they're on the creative side but overall I love learning. I was given the highest award at my high school graduation for Literary Studies, Psychology and Physic! I can draw traditionally, digitally, I can paint and craft, I'm learning to sew and I love to sing and write. I care about people, I'm good at listening and always want to show my love for people. I can cook a pretty good meal or bake yummy sweets most of the time.
Each person has a set of skills that makes them who they are, driven by their passions, interests and what's important to them. Autistic people will struggle in some skill areas, but they are able to balance out when they have the support, assistance and accommodations they need! Autistic people can thrive no matter the support they need. We are disabled but we have strengths too.
Thank you for reading!!
-Kittie