CORONAVIRUS RESOURCES FOR FAMILIES
Milestones Autism Resources
4853 Galaxy Parkway, Suite A
Warrensville Heights, OH 44128
Phone: (216) 464-7600
By Nathan Morgan and Molly D. Dann-Pipinias
As self-advocates, we understand the difficulties that sensory imbalance can cause us in our daily lives. Learning strategies for coping with our different sensory issues can help us feel our best, be successful in the workplace and find social outlets.
We recommend you first identify what kind of sensory experiences you find most difficult, whether touch, sound, light/seeing, smell or taste. Often we are oversensitive (hypersensitive), for example sound feels much more intense to us. We can also be less sensitive than neurotypical people (hyposensitive). For example, if we need a stronger hug or touch. As we get older our sensory issues may change. Some things may get better while others may get worse.
Understanding what you like and don’t like, and what you can and can’t handle gives you the self-knowledge to succeed. It empowers you to adapt your routines, use tools and accommodations to get the most out of life. It can be frustrating, but through trying different approaches you can find ways to make it better.
We know when we start feeling a certain way that we can’t handle things or we will have a meltdown or other bad reaction. So we have to make decisions about our activities and routine and know when to remove ourselves from a situation when we feel that level of stress that leads to a meltdown. Really thinking about what situations, interactions, sensory issues and feelings lead to a downward spiral of a meltdown can help us get control. It doesn’t mean meltdowns won’t ever happen, but it can reduce them and make us feel better.
The world doesn’t change for us so finding ways to adapt or avoid things that are difficult for you can help:
Taking care of yourself including hygiene and healthcare is a special problem. Keeping good hygiene is important because keeping your job, having friends and a social life, and good health can all be affected. For example, showering, brushing your hair and using deodorant every day is so important but can be hard to tolerate from a sensory standpoint. Figuring out ways to tolerate what you need to do, and what about these routines bother you most, can help you find solutions and compromises. For example, although I don’t like to brush my hair, I know the tangles will get worse. Using tools like a detangling spray and experimenting with different brush, pick or comb options until I find one that feels most comfortable helps. I love the feel of the shower but I know the transition of turning on the water and getting in is uncomfortable for me. Knowingi my challenge helps me problem solve.
You may be feeling uncomfortable in your body. This could be the result of constipation, digestive problems, lack of exercise, nutrition problems, lack of hygiene. You may need to see a doctor to check.
No matter the approaches we try, there may be some things we just can’t handle, for example light shows or fireworks. This can impact our neurotypical friends or family if we can’t go to events like rock concerts or baseballs games that inevitably have fireworks. We can test using special glasses or earplugs and sitting as far away from the main action as possible. Maybe seeing fireworks on the big screen TV is the closest you can tolerate but then be able to comfortably see the beauty of them. Or watch them from inside a parked car with closed windows.
Explaining what you have learned about your needs and how you are addressing them can be stressful. But talking to the family or friends you think will be most supportive can be a great start. Helping neurotypical people understand the intensity of sensory experience on the spectrum may be challenging – try expressing it as imagine if what you heard sounded 100 times louder. Share what those most difficult areas are for you, the strategies you’re using and how that will help you be successful in school, work and daily life. Think about which things are most important to you, are most difficult versus where you can compromise and try to adapt to your family’s needs. You may be able to brainstorm solutions together with them about things that are bothering each of you most.
Sometimes sensory issues can result in a behavior that causes you to hurt yourself, such as scratching, hitting or cutting. This can be a neurological response to an uncomfortable sensory experience. Ask for help from a trusted therapist, doctor or family member.
Learning what you need to feel good and function your best gives you more control over your choices. We know it can be discouraging figuring out the right balance and answers for your unique situation. From our experience it is so fulfilling to find happiness when you can make the choices and plan your routine and career choices that are best for you. This process helps us be strong, confident self-advocates
Making our home a safe sensory experience that we can find refuge in can help us re-energize and then be able to go into the neurotypical world and accommodate to those expectations every day.
Nathan and Molly are self-advocates and professionals working in the community who speak about life on the spectrum. Molly has written and spoken on the topics of relationship, sensory balance and coping strategies. Molly has also presented to medical practitioners on the topic of strategies for supporting patients with autism. Nathan Morgan, LSW, Early Intervention/School Age Coordinator, has a specialty in services for families and individuals with ASD. He has spoken and written about early intervention, college tips, sensory balance, coping strategies, relationships, gender identity and sexuality.
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