Please Don't Call Yourself an "Autism Mom"

"Is a man not entitled to the sweat of his brow?

... 'No,' says the man in Moscow, 'it belongs to everyone.'

I rejected [that answer]. Instead, I chose something different."

~Andrew Ryan, BioShock

There was an article that ran today in the Huffington Post. It's titled, "Why I Call Myself an 'Autism Mom.'"

A few paragraphs in I was already cringing. This mother starts off admitting she was told that the term "autism mom" is really offensive (and it is - I'll get to the reasons behind that in a minute). She acknowledged the problems...and then went on to argue that she should be able to use the term anyway because of what she thinks it means.

That's issue one. If you're trying to show support for a person or a group of people, and that group comes to you saying, "Please don't do that, it's harmful to us because [insert reasons here]"...the appropriate response is to apologize and not do it again. By persisting in calling herself an "autism mom," she's hurting the very group she's trying to support.

Issue two: She tries to compare it with calling oneself a "soccer mom." The problem here is that "soccer mom" refers to a mother whose children play soccer, and she tries to support their passion. It's not in any way equivalent to saying that "autism mom" means, as this mother argues, that she is "not afraid of the word 'autism'" and tries to support her autistic child.

Soccer is not a disability, and it's not lifelong. If your ten-year-old plays soccer, within a few years one of two things is going to happen. Either he will be able to pursue soccer without needing as much support from you (in the form of driving him to games, making sure he has time to practice, and so on), or he will simply get tired of soccer and move on to something else. Regardless of which it is, you will not be a "soccer mom" forever. Parents of autistic children aren't in that position.

The third issue is this little quote: "I never want anyone to assume that I somehow think my son's autism is about me." But, see, that's exactly what calling yourself an "autism mom" implies.

The community dislikes the term "autism mom" for two reasons. The first is that, plain and simple, you are not parenting a developmental disorder. You're parenting an autistic child who has complex needs, desires, thoughts, and feelings.

(What I especially don't understand is when you insist on referring to your child - as this author does - as a "person with autism," but then turn around and call yourself an "autism mom." Isn't that a bit contradictory?)

That leads into the second reason the community doesn't like this term. By calling yourself an "autism mom," you're claiming a term that isn't yours.

I have autism. I'm always going to be autistic. That means that when I walk into a room, my autism comes with me. I can't ask a babysitter or respite program to watch it for a weekend, a night, or even a few hours. When it was time for school, I didn't get to send my autism by itself and be away from it for 6-8 hours, five days a week, thirteen years in a row. And my autism will never leave for college, move out, or be placed in a group home one day. I will have it until the day I die.

I'm not denying this mother loves and supports her child. I don't know her. But I do know that there was a time in her life when autism didn't apply to her.

She argues that "neurotypical parents of children with autism need to be able to identify other parents in the same circumstances." I quite agree. You're absolutely, one hundred percent welcome to identify yourselves as just that - parents of autistic children.

But it's just not possible to respect your autistic children without respecting autistic adults. Autistic adults approached this mother to tell her that the term "autism mom" is disrespectful and hurts all of us - and she spit in their faces. She wrote this article to tell those autistic adults, in essence, that her opinion was more important than theirs.

So, to the author of this article, let me ask you something. Is that the way you want neurotypical people to treat your son when he's ready to advocate for himself? Is that the kind of response you hope he'll get?

If not, how would you like them to answer him?

50 Ideas for Sensory Input

"The way [any two autistic people] feel is different,
so they play differently.
Their world perspective is different,
so their system is different."

~With The Light, volume 1

Sometimes your regular methods of stimming just aren't enough, and you need more ideas as to how to regulate sensory input. This is often referred to as a "sensory diet," and can be beneficial for sensory seekers (people who don't get enough or the right kind of input from daily life) as well as sensory avoiders (people who get too much of that input). Here's a list of 50 ideas for anyone who isn't sure where to start.

Disclaimer: Don't expect any and all of these to work for any given autistic person. What works wonderfully for one person might be torturous for another. Finding the most helpful sensory experiences usually requires a bit of trial and error.

1. Jump rope.
2. Bounce on a trampoline...
3. ...or exercise ball.
4. Hit a punching bag.
5. Set up appropriate lighting and make shadow puppets.
6. Play flashlight tag with a group.
7. Use a straw to blow bubbles in milk or another drink.
8. Build a snug fort out of blankets or couch cushions.
9. Chew gum.
10. Eat sticky or hard to chew foods, like peanut butter or caramel.
11. Lie under a weighted blanket. (If you don't have one, try layering blankets on top of each other.)
12. Play with kinetic sand, Play-Doh, or "slime" made by mixing cornstarch and water.
13. Go swimming.
14. Take a bath. Bubble baths provide an extra sensory experience.
15. Climb a rope ladder.
16. Experiment with yoga poses that put pressure on different areas of the body. (Here's a list of ideas to get you started.)
17. Be massaged.
18. Carry a stack of books or other heavy items. (Make sure not to make it heavy enough that it could injure you. The recommended limit is 10% of your body weight.)
19. Rock in a rocking chair.
20. Play in a ball pit.
21. Use a foam roller to exercise...
22. ...or have another person roll it over you. If you don't have someone able or willing to do this, see if you can get access to a squeeze machine (sometimes called a hug machine).
23. Lie or swing in a hammock.
24. Bang on a drum.
25. Play the xylophone.
26. Put on a body sock.
27. Finger-paint.
28. Dance. Switch up the music if it isn't meeting the level of stimulation you need.
29. Ride a bicycle...
30. ...or skateboard.
31. Do jumping jacks or donkey kicks.
32. Play tug-of-war.
33. Sing.
34. Turn on a lava lamp and watch. Being in a dark room heightens the effect.
35. Play in a sink or large bowl of soapy water.
36. Shake a snow globe or glitter jar. (If you don't have one, you can find instructions on how to make a glitter jar here.)
37. Bury your hands in a container of uncooked rice, dried beans, or flour.
38. Spin on an office chair, or use a toy that provides the same movement (like Sit 'n' Spin).
39. Do wall push-ups.
40. Apply or spray strong fragrances, like essential oils.
41. Give or receive a tight hug.
42. Turn somersaults...
43. ...or cartwheels.
44. Ride or be pulled along on a scooter board.
45. Push someone in a wagon.
46. Lift weights.
47. Do a handstand.
48. Try wheelbarrow walking.
49. Drink soda or carbonated water. Anything that fizzes in your mouth will do.
50. Bounce a ball against the wall.

This isn't a complete list by any means - there are a huge number of ways to regulate sensory processing. If it feels right to you and isn't harmful, that's all that matters.