Women on the Spectrum RAWRing for Quality of Life

Touch Me…No! Don’t Touch Me.

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The other day I had one of those life altering epiphanies, the kind that leave you sobbing for air and unable to stand.  I do so enjoy weeping in public, but some days you just have to run with it and let the tears flow.  Although, now that I have your attention, I do have to admit that they were really happy tears, this is actually a very good story–a story of empowerment and revolution and turning things around at last.  I’m sharing it here, my friends, because it was one of those watershed moments where another piece of my ASD identity clicked solidly into place.  I fervently wished I had only known then what I found out a few days ago–and so I share it to (I hope) shorten someone else’s journey.

Let me ask you first, if you’re on the spectrum, how are you with being touched?

I’m a sensory-seeking ASDie, and have always been touchy-feelie to the point of everyone else’s annoyance.  Yet, when it comes to receiving touch, it has always been on everyone else’s terms:  when I could be touched, where, how often, the quality of that touch.  My endless hunger to touch and be touched meant that I was always left needing/wanting more, and willing to compromise just about anything to get it.  My issues with selective mutism and Alexithymia make it difficult to explain what I am feeling physically or emotionally–especially when attempts to do so either offend the other person or lead to misunderstanding (“I didn’t hurt you, I barely touched you!”).

Now, take that a step farther, and realize that people will generally deny and attempt to discredit your unusual claims that their touch hurt or burned or prickled or tickled.  “It couldn’t have, I just did this!”  And they do the thing that set your sensory system on edge one more time.  *SHUDDER*  Anytime I attempted to explain to someone that their touch burned or hurt, I was always told that couldn’t possibly be what I felt, and had my experience subjected to correction.  If I begged for deep pressure, I was told that would hurt, and shown a nice, pleasant light touch–which tickled or burned.

What did I learn from a lifetime of this?

I learned that touch and pleasure was often painful.  I learned to confuse the two in my brain.  I also learned that if I wanted to be touched at all, and not cause confusion, argument or retreat of my partner, that I would accept whatever touch I was offered–even if the searing pain of it threatened to cut me in two.  I learned that touch was always on everyone else’s terms–which also set me up to be abused.  Let me be clear, there were times when I was.  Sometimes that abuse was perpetrated innocently–without the intent of harm.  Sometimes not so much.

What I didn’t learn was that touch could and should be pleasurable.  That someone could be taught to give that gift to me with my input, guidance and help–and that I could direct such things.  I could direct and control that touch to keep it feeling okay in my body.  I could give consent to touch, but I could also revoke it at will, and should if things didn’t feel good.

Sitting in the middle of my pediatric massage for autism class, I received touch for the first time from a person who:  sought consent before touching me, checked to see that consent hadn’t been revoked when things started to get intense for me, understood my sensory issues, only touched in a way unlikely to bother them, and changed her approach as I directed.  For the first time in my life I was in control of receiving touch, my boundaries and sensory issues were respected and honored.  I was heard and accepted.

Of course I cried.

Over the last several days, with some distance and continued processing, I’ve realized how very important professional massage can be for myself and ASDies like me, but most especially for women on the spectrum.  Social pressures to conform are different for girls, even when it comes to the management and health of our own bodies.  All little girls should be taught about safety, boundaries, and consent as a component of their own health and hygiene.  ASDie girls (and women), might need to have those things modeled and practiced.

When touch is stripped of interpersonal pressures and emotional complexity, as it is during a massage by a licensed, professional massage therapist, then the important issues of consent, boundaries, exploration of pleasant touch versus irritating touch, and how to communicate about those issues are much easier to handle.  Adding the additional difficulty of managing relationships, hurt feelings and pressure to meet another person’s desires in the midst of trying to figure out all those very essential skills of good touch hygiene is simply too much to take in all at once when sensory issues may completely impede processing.  Relationships and touch are already complex and confusing, but add in the fact that touch is likely jamming all the sensory circuits at the same time–and you’ve got a recipe for disaster.

I think all ASDies should have professional massage by licensed therapists who have been trained and understand the issues with ASDies and touch.  It will help everyone.  As a woman fully aware of social, sexual and emotional double standards with women and sex in our society, I think it is absolutely necessary that women on the spectrum receive this kind of training and attention.

It is a pity that I had to almost get to 50 before I had this experience, but I’ve cried out my sadness over that.  Really, they were happy tears, because it can only get better from here.  The tears have dried and now I’m just passionate that we all have a chance at this, especially our young women.

If you have an experience or comment to share on the topic of touch or massage, I’d love to hear from you.  Please leave me a comment!


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One thought on “Touch Me…No! Don’t Touch Me.

  1. I really found this post well written and very true! Thanks for sharing. If you click on the link for Autism on my blog I also have a few articles…otherwise I hope to catch some more of your posts in the future:)


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