How to Support Autistic Loved Ones at Home
While ABA sessions can be extremely beneficial for support in learning skills related to communication, self-care, executive functioning, and more, support from family and friends in day-to-day life is also critical. The social model of disability, which covers autism as well as other forms of neurodivergence, presents many of the difficulties experienced by disabled people as “a problem with the society where they live and not as a problem within the person.” This is in contrast with a medical model assuming that disabilities are inherently associated with deficits or problems to be “solved.” Support systems at home and in one’s community ensure that unique individual needs are met, and can help everyone thrive.
I am not autistic myself, and as Shannon Des Roches Rosa wrote in her blog post Eleven Ways You Can Make Your Autistic Child’s Life Easier, “even the purest love can’t always help you intuit how being autistic affects your child’s body, their senses, and how they interact with the world.” As such, I’ve written this post and the list of suggestions below based directly on the writings of autistic people advocating for the supports from which they benefit.
Copyright © 2021 Crompton, DeBrabander, Heasman, Milton and Sasson
Physical and Environmental Supports
Accommodations at home and in the community can include physical changes, like providing a grip bar in a bathroom. Parking spots close to buildings’ entrances accommodate the needs of people in wheelchairs or who otherwise have difficulty walking. Some physical impairments are hardly even perceived to be disabilities, because those impairments are common enough that support for them IS reliably provided at a societal level. For example, I’m becoming more and more shortsighted as the years go on, but it’s pretty easily addressed by simply wearing glasses.
The same principles of environmental supports can be extended to most any kind of physical disability or specialized need. Physical adjustments in your home to help support a loved one with autism might involve use of visual aids and reminders, avoiding certain kinds of lighting such as fluorescent bulbs, or providing access to sensory activities and stimulation like fidget toys or a weighted blanket.
Other supports are more social in nature, as when it comes to communication and interpersonal interactions in general. One wonderful accommodation is the simple acknowledgement that not all communication has to be vocal! Your loved one might prefer to communicate textually, or using a device or tablet application like Proloquo2go. Sometimes, especially in stressful moments, they may prefer not to communicate at all and instead need to take time for self-regulation before resuming a conversation.
In her blog post “A Quick Note on Disability vs. Impairment,” Savannah Logsdon-Breakstone provides a great example of the importance of social supports on a societal level. In a non-supportive environment, people interacting with someone using alternative communication may be impatient or dismissive, or talk to someone else accompanying them as if they weren’t even there. In a much more accommodating environment, supports could include simply waiting for the person to take their time to respond, and not talking over or for them.
Catherine J. Crompton and co-authors wrote an excellent article regarding potential difficulties with communication between autistic and non-autistic people – Double Empathy: Why Autistic People Are Often Misunderstood. In short, complex verbal behavior like metaphors, sarcasm, or talking around problems in order to be “polite” can be difficult for an autistic person to understand. Clear and direct language, especially when asking questions or giving instructions, can be very helpful.
Based on the general principles described above, here are some more specific examples of actions you might take at home to provide loving support.
- Be patient – give extra time for responses when communicating with each other, repeat yourself if asked to do so, and/or ask if it would be helpful to repeat yourself.
- Allow for multiple forms of processing information – provide visual aids such as closed captioning when watching TV together, or a written or picture schedule for guidance during household chores.
- Change the environment in simple ways – sounds, scents, and textures that don’t even register to you may be very aversive to others! Sensory sensitivities can often be fairly easy to address. It may be helpful to provide clothes and bedsheets made from particular fabrics, cook stronger-smelling foods when you’re loved one is out of the house, or have noise-cancelling headphones available during loud home improvement projects. Everyone’s sensitivities are different, so ask what adjustments might be most beneficial, or keep an eye out for what sensations appear to be distressing.
- Be sensitive to potential medical conditions – undiagnosed ailments may be troubling your loved one, especially if they have trouble expressing what they’re experiencing verbally. The Ethics Code for Behavior Analysts requires that BCBAs “ensure, to the best of their ability, that medical needs are assessed and addressed if there is any reasonable likelihood that a referred behavior is influenced by medical or biological variables” because it wouldn’t be reasonable (or ethical!) to try to teach someone to use coping skills when they have something like an ear infection that antibiotics would much more directly address.
- Don’t require social masking – accept, and even encourage and celebrate, behaviors like stimming and echolalia. These behaviors can be forms of communicating distress, in which case environmental or medical variables should be addressed as noted above. However, they are just as likely to be ways of expressing joy or excitement. They may also simply be self-soothing or -regulating.
- Downtime – allow time and space for your loved one to be alone and recharge their social batteries in whatever way works best for them. Socialization at work, school, during therapeutic sessions, when running errands, and even simply with family members at home can be exhausting. Don’t take it personally if they ask for some space!
- Provide structure – do what you can to help make sure that your loved one knows what to expect as the schedule for each day. This can entail simply having a predictable weekly schedule of events and activities, or maintaining a clear family calendar and giving plenty of advance notice if there is likely to be more variability.
These are just a few possible forms of support that your loved one may appreciate. Everyone’s needs are different, so it is important to learn about them individually. Above all, listen or attune yourself to their own needs rather than assuming that they’ll be the same as what yours would be, or even as what another autistic person’s might be.
If you think you might benefit from some extra brainstorming for how to create a healthy support system and provide accommodations in your home, please reach out to us at email@example.com!
Crompton C, DeBrabander K, Heasman B, Milton D and Sasson N. (2021, May 11). Double Empathy: Why Autistic People Are Often Misunderstood. Frontiers for Young Minds. 9:554875. doi: 10.3389/frym.2021.554875. Retrieved from https://kids.frontiersin.org/articles/10.3389/frym.2021.554875
Creative Commons Attribution License Information
Copyrighted graphic originally appeared in Frontiers for Young Minds website. It has not been modified and is used with permission under the terms of the Creative Commons Attribution License (CC BY). This usage does not constitute an endorsement from Frontiers for Young Minds, Crompton (et al.), or any other affiliated party for Waypoints, LLC.
This is a common question for most families of children who might be autistic. Parents across the nation have both
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