As a society, we’ve taken some significant steps towards greater acceptance of individuals with autism spectrum disorder in recent years — from mainstream television portraying characters on the spectrum, to large corporations finding ways to better support the community. But despite increasing information and awareness, many people still may not know how to respond to an autism diagnosis in a way that reflects true understanding of the community and the experiences of those on the spectrum.
Even the things that are becoming more commonly known about autism — for example, the difficulty for some people on the spectrum to maintain eye contact or navigate social situations — can be detrimental to the community in the form of generalizations and stereotypes and ignoring an autistic individual’s unique experience.
To help foster more understanding, we asked our readers on the autism spectrum to share things they’ve heard that they wish others would stop saying.
Here’s what the community had to say:
1. “I really wish people would stop saying, ‘Oh, but you’re so normal.’ When people say this, it feels like it is discrediting all the work I have done to get to the point where I am almost ‘normal.’”
2. “‘I won’t have my child vaccinated. The risk of autism is just too high!’ Both myself, my younger brother and my son are on the spectrum. It’s so lovely to hear, on a regular basis, that parents would rather potentially expose their precious children to deadly diseases than have them ‘end up’ like me.”
3. “I wish people wouldn’t say, ‘Oh, but aren’t we all a little autistic?’”
4. “I hate it when people say I’m ‘acting crazy’ and ‘You need to calm down.’ Sensory overload isn’t fun, and even at my age, it still happens more often than not. It doesn’t make me ‘crazy,’ and I’m not overreacting. I just get overwhelmed.”
5. “I just asked my 9-year-old son, and he said he wished others would stop telling him to stop making his clicking noise because he likes the way it gives pressure in his mouth and he feels calm. He wishes other people better understood how he gets calm.”
6. “When I’m trying to explain the anxiety I feel about crowded places and loud noise and people minimize it by saying, “Well, yeah, I don’t like that either.” It’s as if I’m making a big deal out of something so menial, but they don’t get how my sensory sensitivities can cause me physical discomfort and distress. I’m not being dramatic.”
7. “When people tell me I don’t have feelings or shouldn’t/cant have emotions. I most certainly do have emotions, it just takes me a little longer to understand them.”
8. “I wish people would stop saying, ‘Are you sure you actually have Asperger’s/ASD?’ People are so quick to judge someone’s current situation, not understanding where they came from and what it took them to get where they are today.”
9. “‘So and so’s son/daughter has autism, but theirs is much more severe than yours.’ Just because you cannot always see it, doesn’t mean it isn’t happening.”
10. “‘You’re incapable of knowing what others are actually saying, thinking, or feeling’ — said the people who hurt me the deepest throughout my life.”
11. “My personal favorite: ‘Oh, I know someone with autism.’ *Person continues to ramble generic stereotypes like a lecture and ignore you as an individual.*”
12. “‘I am so sorry you have that.’ There is nothing to be sorry about. Autism is another way that the world is looked at.”
13. “‘You must be like Rain Man, then!’ No. I’m legit not.”
14. “My kid wishes other kids would stop using the word ‘autistic’ as an insult.”
15. “A schoolteacher told me my Asperger’s is an ‘excuse.’”
16. “’Can you please look me in the eye?’ No, I can’t.”
17. “My 11-year-old daughter said, ‘I don’t like it when people say I can’t do something. I can do anything. It might be harder and take longer because my brain needs more time, but I can do it.’”
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Writer Anonymously Autistic shares the tools, such as noise-canceling headphones and sunglasses, she keeps with her when going out.
A sensory room or sensory space can really help with a child’s development. A sensory gym in a setting such as a pediatric clinic may have various kinds of therapy swings, trampolines, ball pits, crash pads, barrels, tunnels, mats, rock walls, ladders, ramps… the list goes on. A sensory room (also known as Snoezelen rooms) can have high-tech lighting and fiber optics, projectors, water beds, bubble tubes and wall panels. The purpose of these rooms is to provide a relaxed atmosphere where the person is surrounded by pleasant sensations (unique tactile experiences, relaxing aromas, interesting light effects). While all these things are absolutely wonderful and incredibly therapeutic, providing an appropriate sensory space with sensory stimulation for your child right at home can also be possible.
Instead of worrying about finding a “space,” I suggest focusing on the space you do have. If you don’t have a large room, don’t worry. Small spaces can be just as effective, and there are ways you can make it work. Simple and cost-effective options are available and can help your child self-regulate, de-stress and provide necessary sensory stimulation for sensory seekers. Read below for some helpful ideas!
1. Instead of installing expensive swings, your child can get their vestibular stimulation from bouncing on an exercise ball, sitting in a rocking chair or jumping on a mini trampoline.
2. What about lighting? You don’t need high-tech lighting equipment to do the trick. You can add a relaxing glow to your sensory space by using some Christmas lights, net lights, string lights, battery-powered candles, glow sticks or lava lamps. Lighting is such a powerful thing. It influences us in subtle ways and can change the way we feel. For example, fluorescent overhead lights that emit a cool tone can make us feel uncomfortable. Warm, soft lighting can make us feel relaxed. Don’t be afraid to use lighting to create a relaxing atmosphere and comfy ambience.
You can even include a light table into your sensory space. Check out this post on how to make an inexpensive DIY light table.
3. Have a variety of tactile and sensory items. I would recommend dividing them up into little bins or individual storage containers. If you have too many items lying around, it can be visually over-stimulating, and then your child might become uninterested. Instead, I suggest keeping the unused toy bins out of sight and introducing select toys one at a time into your child’s sensory space. Rotate the bins as needed, this way your child won’t get bored (or overstimulated by a mountain of items).
4. Sensory crash pad! Why not create your own? A very simple DIY solution is to take a large zip-up duvet cover and stuff it with pillows, blankets, large stuffed animals, etc. Zip it up and let your child safely jump and crash into it. *Note: Crashing into a crash pad, jumping, climbing, crawling, pushing, pulling, lifting objects or any sort of weight-bearing activity can be great for providing proprioceptive input. What’s proprioception? The sensations from our joints and muscles that underly body awareness. When we give our body this type of sensory input, it can help improve body awareness and can be organizing and calming for the body.
5. Therapeutic scents. You don’t need a fancy machine that sprays out various aromas. You can simply take some essential oils, dab it on a cotton ball and let your child smell it. Playing with scented play doughs is also a way to incorporate some “aromatherapy” into your sensory space! Lavender scent can be calming and help with relaxation.
6. A cost-effective option for building a private “snuggle space” for deep pressure is taking a play tent or even a blow up kiddie pool and filling it with blankets and lots of stuffed animals. Make sure your child is burrowing into all the fluff safely and with supervision.
7. Tactile wall. You can create your own textured wall or board using household items. I’ve even seen a wall with old CDs glued to it (smooth, shiny side up) which makes for interesting visual stimulation. Check out Pinterest for more DIY tactile wall ideas.
8. Instead of an expensive massage mat or vibrating equipment, a simple handheld massager can provide your child with vibration sensations. A vibration massage can be organizing and alerting, giving a child that extra sensory information to “wake up” their muscles. It can be therapeutic and calming for a child who is a “seeker” and gives them the sensory input they crave. You can give your child a vibration massage by turning it on and rolling it up and down your child’s back, arms and legs. If your child does not like the sensation of the vibrations, never force it. Instead, you can try keeping it powered “OFF” and just use it to give a gentle rolling massage. Homedics makes wonderful massager that I often use with my pediatric clients. If you’re a Sensory TheraPLAY Box subscriber, you’re covered because the Homedics massager was included in the January box. If not, you can find these massagers here and here.
9. Music? You don’t need a state-of-the-art sound system. A simple stereo or mini inexpensive sound dock to play music over is a wonderful option. Or, simply play some songs on your phone to have as background noise in your sensory space. Music can change the way we feel. Songs with a steady beat can be calming and effective in lowering anxiety for some people. Our bodies respond and “sync up” to the music. Native American, Celtic, stringed-instruments, drums, and flutes are excellent at relaxing the mind. Nature sounds, and sounds of rain, light jazz, classical and easy listening music are calming as well.
Best of luck to everyone incorporating sensory activities and items into their homes! As you introduce different sensory items, you will learn more about what your child’s sensory preferences are by observing what they gravitate to and enjoy. Many times, seeing what helps a child self-regulate is a matter of trial and error and pure exploration. If anyone has created their own sensory room or has addition DIY sensory advice, comment below and share!
Christina is an OTR/L and owner of Sensory TheraPLAY Box, LLC, the monthly sensory box for children with autism and/or sensory needs.
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