Top Questions to Ask Before You Start
Recently, I have connected with the London School of Childcare Studies and have delivered a series of webinars about Autistic children and our community.
I have received some great questions in regards to how to best take care of Autistic young people.
One of the most common questions that I received was ‘What questions should I ask of the Autistic young person’s parent/carer before I start?’
So here is a starting list of some questions to help you get that conversation going.
What are their interests?
Autistics tend to make deep connections to our areas of interests. We can become quite immersed in these passions and they are incredibly important for our mental health and Autistic joy. Our community refers to these as our deep interests and passions.
Deep interests and passions: terms often used in the Autistic community to convey our great connection to a subject matter or activity. These are something that we have a passion for and we love immersing ourselves in it. Some Autistics explain that their deep interest as so interconnected to their daily life and emotional well-being that it is like an extension of themselves.
An example may be an Autistic person who is passionate about Pokemon and spends time talking to others about Pokemon, plays Pokemon with others and enjoys reading about Pokemon. They become like an expert on Pokemon.
An Autistic young person may be passionate about geology, board games or dinosaurs. You may find it helpful to look up a few bits of information about the topic ahead of time. This way you can join in this enjoyment if the Autistic young person would like to share this interest with you. Autistics tend to connect over interests and this can be a great way to begin a bond with the young person.
How does this young person communicate?
Communication with the Autistic young person is vital in order to be able to take care of them. Many Autistics speak but also many Autistics need non-speaking time or use AAC (Augmentative and Alternative Communication).
Assistive Ware describes AAC as
“Communication devices, systems, strategies and tools that replace or support speech. These tools support a person who has difficulties communicating using speech.”
As the quote implies, communication tools can vary widely and it can be helpful to familiarise yourself with the young person’s communication styles before taking over their care.
To find a growing resource list for AAC users and AAC, you can check out this blog here
Do they have any co-occurring medical conditions?
Co-occurring — a condition that someone can have while also being Autistic.
Raising Children Australia quotes that about three-quarters of Autistic children are diagnosed with another condition. Examples of such conditions may include food allergies, diabetes, hypermobility or celiac disease.
Knowing about any medical conditions ahead of time will give you the ability to learn more about the condition before taking on the responsibility of the young person. You can then be best prepared to assist with medical and potentially medication needs.
Do they need help with self-care tasks?
These self-care tasks may include feeding oneself, dressing and toileting. Society often places pressure to not need help with self-care tasks past a very young age.
We often hear statements like
‘You’re too old for my help’ or ‘Aren’t you a big girl now?’
As mentioned above, Autistics have a higher likelihood of having a co-occurring medical condition. Therefore, they may experience times of more fatigue or pain and therefore need more of your support. In addition, dyspraxia is incredibly common amongst Autistics.
The NHS UK defines dyspraxia as
“also known as developmental co-ordination disorder (DCD)…and it affects movement, strength and co-ordination.”
Therefore, many Autistics may need support into older years.
An important note is that the young person’s support with self-care tasks may not be consistent. Therefore, they may be able to dress themselves one day but need some help the next.
Asking for help is ok. Needing help is ok.
Are there any local or online community hubs?
And by ‘community’, I mean Autistic community. Are there any local activities that provide a place for Autistic young people to come together? Some good places to start looking are at your local library, gaming café or disability charities. These will be places where the young person is more likely to feel included and welcomed.
Having connections within the Autistic community is vital for an Autistic person’s mental health and wellness. These are the kind of relationships in which the young person can be more authentically themselves.
With parent permission and safety measures in place, you may also find online community hubs.
Some examples of highly recommended online groups are:
Who do they enjoy spending time with?
Autistic people tend to create deep bonds with the people in their lives and that includes friends, family members, neighbours or anyone else really. It’s really important to create time for these relationships. Sometimes young people have such structured schedules and they miss these bonding times.
Some Autistic young people have lots of friends while others may have a smaller amount. It greatly varies!
Please note that Online Friends — someone you meet and know only through virtual contact — are totally legit friends. Sometimes it can be hard to find time or access for the in-person meet ups and so online friends provide a great source of daily support.
What are their comfort items?
The day-to-day has so many unknowns and comfort items are a vital piece to our regulation and happiness. Comfort items may be a stuffed toy or blanket or even a stim or fidget tools. Knowing what comfort items the Autistic young person needs will help you ensure these items are available to them. In addition, many Autistic people enjoy taking their comfort items with them out of the house.
There is no age limit on comfort items.
There is no age limit on stim tools or fidgets.
It is very much part of Autistic culture for us to continue valuing comfort items into and through adulthood. We have fun telling others about our favourite comfort and stim items.
What are their sensory preferences?
I think most people are familiar with how Autistic people have individual sensory preferences.
Light sensitivity — prefer sunglasses and a hat most of the time?
Temperature sensitive — prefer their food at room temp versus hot?
Noise sensitive — prefer ear defenders in public and around others?
The list of potential sensory preferences is as long as there are sensory variabilities. It can be incredibly helpful for you to ask ahead of time if there are known sensory preferences.
A quick note — people can be
- Hypersensitive or increased sensitivity: Example — for someone to feel hurt when someone else brushes by them
- Hyposensitive or diminished ability to detect stimuli: Example — a young person not notice that they skinned their knees while playing
What Autistic advocates can I follow that will inform my care?
If there is a good thing about social media, it’s that there are so many fantastic Autistic role models sharing their experiences. Since the Autistic community is incredibly diverse and complex, you can find an immense variety of potential people to follow and learn from.
So the next time you open up those social, feel free to start sending some follows!
In addition, you may want to check out my and Scott Neilson’s book ‘Creating Safe Spaces for Autistic People’. We include key principles, values and approaches to supporting Autistic people as well as lots of signposting to community members.
Now available on Amazon in Full Colour and Reduced Colour versions
Ebook now available and hosted on AUsome Training
What does the Autistic young person want you to know?
Let’s not forget about the most important person here.
Hearing from the young person themself will of course give you insight into building your connection with them.
If you are unable to meet with the young person before starting your new role, it could be great to ask their parent/carer to be a middle person and help move questions and answers between the two of you. Asking the Autistic young person about what they want to share will let them know that you value their opinion and interests.
And again, if you are needing more help in understanding how to best take care of an Autistic young person, us Autistic adults are happy to help answer your questions.
Thanks for learning about the community,
Laura Hellfeld
Sign up to my Newsletter Here
Connect with me on social media
Last modified: 6 January 2025