It’s a question that looms large for every parent of a child with autism. I finally feel like I’m starting to understand the realities of living with a child on the spectrum—but how will my child manage autism in adulthood? Will she be able to handle living on her own, or will she need some sort of assistance? How well will he be able to socialize or make a living? Are these even realistic goals for our family?
Understandably, parents of children with ASD worry about the future. Even when parents want to and are able to care for and support their child in adulthood, it’s not always what’s best for the child. Plus, what happens when you are no longer around to care for your child? A child who has always been cared for by you and you alone will have an even harder time transitioning.
For these and many other reasons, it makes sense to begin doing everything you can to build independent living skills for your child as often and as early as possible.
Promoting Independent Living for Your Child With Autism
Helping our children become fully functioning members of society capable of independent living is a common goal for all parents—but it’s a goal that can feel like it’s a long way off for the parents of a child with autism. Parents shouldn’t lose sight of the need to prepare kids for adulthood simply because they are caring for a special needs child. If anything, this reality should make parents more vigilant about integrating daily living skills, such as chores and other heavy work, into their schedule at a younger age and making a more concerted effort overall.
We understand that parents often feel that their child with ASD has enough challenges, or may feel it’s unfair to set high expectations for a child with so many uphill battles to fight, but trying to make life more fair by coddling your child is the worst thing you can do.
Instead, have patience and understanding while still holding your child to a reasonably high standard. Here are a few tips to remember:
Start Early & Start Small
We’ve said this a couple of time already, but the time to start preparing your child for independent living is right now—whether your kid is three or ten or twenty. Begin nurturing the skills your child will need for life outside of your home as soon as possible. If your child is still very young, this can be easier said than done. If you’re in a hurry and your child is fighting you every step of the way, of course it’s easier to just do the task yourself. We understand. But, as much as you are able, insist that your child do the things that he’s capable of himself. Even small, simple tasks like unloading silverware or matching socks can begin to put the building blocks of independence into place.
Work on Self-Care Skills
Perhaps the most important step for independent living is being able to practice basic self-care. Washing, grooming, toilet training, and being able to feed oneself are life skills that most parents take for granted after their children reach a certain age—but children with autism tend to hit these developmental milestones later in life, if at all, and need more practice to achieve mastery. This is why it’s so important to begin instilling an independent attitude in your child at a young age. Make sure you include self-care activities on your child’s schedule frequently, so that these skills become a part of her daily routine. We also recommend that you seek the services of a highly-qualified occupational therapist, whether through your child’s school or through a separate program.
Teach Communication and Community Safety Skills
Second to basic self-care, communication and safety are the top concerns for parents who are trying to guide their children toward independence. Even if your child is nonverbal or minimally verbal, there are practices you can put into place to encourage better communication and to develop language skills. For example, consider aided communication, such as assistive communication devices, social stories which are pictures of each step in a task, or a visit to the doctor, etc., and visual supports, as well as sign language. As best you can, you should teach your child to be able to ask for food or water, express hurt, and be able to ask for a break. Communication goes a long way toward safety, but you should also try to teach your child to know his address and phone number and be able to ask for help. If you live in a city and rely on public transportation, making sure your child has an emergency guide, like the NADTC GET Going Pocket Guide, is a good way to ensure safety while traveling.
Break Big Goals Down Into Smaller Tasks
Often, something that seems straightforward to a neurotypical person feels overwhelming to a person with autism. When teaching independent living skills, try to take on your child’s perspective. You may think that asking your child to take a shower or get ready for school is self-explanatory, unintentionally frustrating your child with a daunting, impossible request. Nobody wants a meltdown when it can be avoided. Instead, think about the ultimate goal and then break it down into discrete, individual tasks—reverse engineering your way back to the larger goal. Rather than telling your child to get ready for bed, for example, ask him to take off all his clothes, put his clothes in the hamper, put on his PJ’s, go to the bathroom, turn on the tap, wet his hands, lather with soap, rinse until all bubbles are gone, put toothpaste on his toothbrush, brush his teeth for two minutes, put the toothbrush and toothpaste away, get a glass of water and his comfort items, etc. When you start really breaking it down, it’s easy to see that a seemingly simple request can take ten or twenty steps. Reinforce these smaller steps with a checklist or visual schedule.
Use Checklists and Visual Schedules
Having a checklist or a visual schedule will help your child establish a clear-cut routine—which can be especially helpful in the morning and the evening. Visual schedules can be particularly useful if you’re trying to cultivate good habits and independence. Introduce the visual supports slowly, starting with easy, two to three step routines. Review each item on the visual schedule or checklist and remind your child to refer back to the learning aid as needed. Over time, your child will become better able to transition from step to step, or even from activity to activity, without much prompting from you. Our occupational therapists have experienced great success using visual schedules with our residential students.
Seek Outside Help—Schools, Vocational Training, and After-School Programs
Always remember that you don’t have to do it alone. In fact, you shouldn’t. Getting your child used to receive instruction and help from trusted adults other than parents is a great way to prepare for independent living. Check out the programs and free resources available at your school and in your area. For a long time, schools didn’t include much in the way of life skills or daily living activities in the curriculum, but that is starting to change, especially for special needs children. Most public schools now have occupational and speech therapists on staff who can help your child develop life skills. Advocate for your child at your yearly IEP meeting with the school. For instance, if you know that your child needs to work on self-care, communication, directions, or money skills, be sure to have that added to the IEP. If you believe that your child will need some level of assisted living in adulthood, start planning for this during high school or college. Many residential programs that cater to the autism community will allow you to register for a couple overnights a week to start to help you and your child ease into the new arrangement.
Even if “independent” living looks slightly different for your child than for a neurotypical child, there are still many steps you can take to make the transition easier. If you would like to find out more about the autism program at Springbrook or request a free, confidential consultation, call us at 864.834.8013.