Those who live with someone who is on the spectrum will more than likely have unique challenges to work through compared to living with someone who is neurotypical. Each individual with autism has their own set of physical, behavioral, and emotional needs, strengths, and goals to work toward. With that being said, taking care of or living with someone who has been diagnosed with autism can have its ups and downs. It is important to understand how to best care and advocate for your loved one, as well as practice self-care so that you are able to do this to your fullest capacity.
The CDC estimates that about 1 in 54 children has been identified with ASD. This comes from the most recent data collected in 2016, and realistically, this number has increased since. Therefore, it is quite likely that most people at least know someone with autism, and a bit probable that if you’re reading this article, you live with someone with autism. You may even have autism yourself. For various reasons, such as the diagnostic tools used to identify ASD, the education surrounding ASD, and the increased awareness about ASD among the general population, plays a role in the recent elevated numbers compared to the past.
While no one person with autism is the same, what one family experience might look like, will not be the same for other families. However, there are some general tips and suggestions that family members or roommates can follow to help not only the individual with autism but also yourself.
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If you live with a person who has been diagnosed with autism, use these five tips to help your family flourish.
1. Get involved with the autism community
One of the best things you can do to help your family member live life to its fullest is to get involved with the autism community. Organizations like the Autism Spectrum Disorder Foundation can offer significant support, including opportunities to interact and socialize with other families touched by autism. Many people find the chance to talk with others who truly understand what they are dealing with because they are facing similar circumstances priceless. The autism community also offers educational resources and information about various forms of advocacy.
Autism Speaks is another great resource for families. They are one of the leading advocacy organizations in the realm of autism. Their site offers a resource guide where visitors can search for information depending on the state that they live in. Not only do they have resources for individuals with autism regarding participating in the community, but they also regularly hold events and promote ones like World Autism Awareness Day.
Another simple way that families who have a loved one with autism can get involved with the autism community is through social media and apps. The Meetup app is highly popular and lists groups, events, and playdates offered by individuals in and around the community. Furthermore, Facebook and Instagram also have autism-specific groups on the local and national levels to get connected with others who support someone with autism.
Ultimately, it just takes some online research or asking around to find the group of people out in your community that is perfect for you.
2. Encourage advocacy
Advocacy simply means championing a person or cause. When you live with someone with autism, it’s vital that you actively advocate for them by educating the people they encounter and ensuring that your loved one gets the support they deserve to succeed.
This might mean seeing that they have a proper Individualized Education Plan in school or pursuing a new therapy with their physician. It may also look like helping plan and prepare for life outside of school, which includes teaching social skills, life skills, job skills, etc.
On a higher level, you can attend local and national events, join an advisory council or board,
You can also advocate for your loved ones with autism by encouraging them to be their own advocate. Self-advocacy is just as important, and individuals who are verbal and are able to participate in advocacy skills should be explicitly taught why it is crucial and how they can get involved.
Ways in which you can teach self-advocacy:
- Using a child with autism’s IEP as a tool to teach her about self-advocacy and disclosure
- Teaching children or adults about sensory systems and how to ask for environmental accommodations
- Supporting a person on the spectrum in learning how and when to self-disclose
- Introducing a person with ASD to the basics of the Americans with Disabilities Act and other important laws.
- Assisting a child or adult in creating self-advocacy scripts to use a variety of settings and situations.
Advocacy is a huge part of being involved in the life of someone who has autism––or any disability. No matter how you choose to advocate, just make sure you do in some sort of way.
3. Celebrate the good stuff
Living with and supporting a family member with autism can be difficult and challenging––some days causing you to feel defeated. This is normal and everyone will go through ups and downs. When a health or mental health condition seems like it is taking over your life, it is easy to focus on the negative and dismiss the positive.
Milestones that are not reached and tasks that cannot be achieved can seem detrimental, and while it is okay to be sad, angry, or disappointed, there is no need to perseverate on the negative.
Instead of dwelling on the downsides, make a choice to celebrate the good stuff. Acknowledge each new achievement, even a small one, and it will be easier to maintain a positive attitude and appreciate the joys that life brings.
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Individuals with autism have so many amazing qualities! Some of which are their:
- Attention to detail
- Deep focus
- Observational skills
- Ability to absorb and retain facts
- Amazing visual skills
- Expertise in many areas
- Methodical approach at tasks
- Approach to novel experiences
- Creativity and imagination
- Tenacity and resilience
- Accepting of differences
- Integrity and honesty
Practice gratitude on a daily basis and focus on what you adore about your family member.
One important thing to remember is that you must celebrate the good stuff even when there seems to be none at the moment.
4. Take care of yourself
Too often, caretakers are so busy helping those who count on them that they forget to look after themselves. That is a recipe for disaster. Putting yourself first sometimes is not a bad thing; it is a survival skill. If you do not maintain your own health, you will not be able to effectively care for anyone else.
Self-care can look different depending on preferences and access, but here are a few self-care ideas for you and your family:
- Practice self-care
- Acknowledge what you have accomplished
- Focus on the positive
- Continue family rituals
- Discover a new hobby or activity
- Get out in nature
- Give yourself time to adjust
- Make time for your friends
- Explore creative interests outside of autism
- Get involved with the autism community
- Look into respite care
Follow a healthy lifestyle, nurture your own relationships and passions, and be kind to yourself. Live, love, laugh––even if that sounds cheesy! Doing so will set a good example for your entire family and make it easier for you to provide them with the support they need to succeed.
5. Remember that autism is only part of the picture
The quote, “Don’t let your disability define you” is one of controversy. People definitely have differing opinions on this. While some with a disability think the person as a whole should come first and not their disability, some believe that their disability affects their life on such a level that they think how can their disability not define them?
With that being said, let’s just put it like this:
Having any sort of disability does not have to define a person.
Even if the level that a disability affects a person is severe, it is still not entirely who that person is and what they are all about. Don’t let autism become the center of your family life or the central feature of your relationships. Make sure that everyone in the family has plenty of opportunities to be both the center of attention and the supporting cast. Making time to do things both as a family and one-on-one will ultimately improve everyone’s relationships and social skills and strengthen your family.
Tips For Living With Someone With Autism Spectrum Disorder: Conclusion
If you live with someone who has autism, then you have multiple reasons to celebrate and find love and positivity in life. Even though your loved one with autism spectrum disorder faces certain challenges, and you might as well due to the way it affects your family, doesn’t mean that everything in the world has to revolve around the disability.
Finding support, advocating for needed services, maintaining a positive attitude, practicing self-care, and keeping a healthy perspective can help you find more joy in the times you share with your loved one.
Brittany Cerny
Master of Education (M.Ed.) | Northeastern State University
Behavior and Learning Disorders | Georgia State University
Updated November 2021
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