Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Sensory Integration and the Autism Spectrum: One Woman’s Experience

with 19 comments

Regular readers know that I tend to stick to telling stories about my kids, and my experience raising them.  Our situation differs greatly to those of other families touched by autism, though of course, there are some strong similarities too.  One thing I’m always conscious of is that these are my own words, and not Pudding’s.  She may interpret this whole experience quite differently as she grows.  And sweet little kids with autism spectrum disorders grow up to be adults with autism spectrum disorders.  It is the lifelong part that we sometimes forget in our rush for early intervention.  I don’t want this month of Autism Awareness to pass without acknowledging that fact.

I can’t predict how she’ll be as an adult, but I do know that I’m incredibly fortunate in knowing some remarkable women on the spectrum, like Lisa and Laura.  When Pudding can’t tell me how strange and uncomfortable the world seems to her, I have the benefit of listening to their voices.  It is a gift.  One I’d like to share with you today as I invite Laura to take the stage to talk about sensory integration.  It is an honour to have her here today.  Please give her a warm welcome.
4 Aspies, 1 house, that's...Life in the house that Asperger built

Sensory Integration and the Autism Spectrum: One Woman’s Experience

:walks up to the lectern…shuffles papers…taps microphone:

“Is this thing on?  Oh it is! Ok…ahem… Hello, my name is Laura, and I have Asperger Syndrome.”

:audience responds:

“Hi, Laura.”

“There are a lot of things I could tell you about what it’s like to be an Aspie, the difficulty navigating social interactions, the communication struggles, and the intense focus on special interests.  Today, however, I’m going to talk about the problems with sensory integration.  Scientists are just now coming to understand, and measure the extent to which people with Autism Spectrum Disorders have difficulty properly processing sensory information.  We complain about things that most others don’t even notice.  For many, these things will just be bothersome, or uncomfortable.  For others, however, they can even be painful.  Each of us is affected differently by this.  My problem areas are primarily sound and touch.

I am extremely sensitive to the way things feel on my skin.  I don’t like the feel of flannel for example.  Believe it or not, it feels rough and gritty.  I can sleep on flannel sheets, but only in long sleeved pajamas with pants (made of either cotton jersey or fleece), and the pillow case has to be regular cotton.  I cannot put my face on a flannel pillow case.   Not only is it rough, but it’s too hot.  Also, regardless of the time of year, I must have a heavy blanket or comforter.  I need the pressure in order to get to sleep.  Otherwise, the sheets feel wispy and light.  They brush lightly on my skin, and that gives me the willies.

Light touch on my skin, generates in me the same reaction others have to hearing nails on a chalkboard.  And while we’re discussing chalkboards, I really can’t stand the feel of chalk.  It makes all of the hair on my body stand straight on end, just thinking about it.  My list of tactilely disturbing things is actually somewhat long.  In addition to what I’ve already mentioned there is:

  • The feel of someone softly stroking my hair, arms or back
  • Anything, except for shoes and the ground, touching the soles of my feet
  • Crisp, tight cotton blouses, specifically the sleeves
  • Limp handshakes
  • Someone resting their hand or arm on my shoulder
  • A light breeze against my skin.  On this one, I will actually put on a sweater even if it’s a hot, light breeze just because I don’t like the feel of the air moving across my skin.

There’s more but I think you get the idea.  Essentially, I’m super sensitive to light touch, and things that are tight or rough.

Sound is another area of sensitivity for me, but it is harder to quantify.  I definitely have a problem with things that are too loud, except sometimes “too loud” varies.  I’m always upset by sudden loud noises, and for some reason all of my sound sensitivities are magnified 10 times or more when I’m inside a car.  I can sometimes be affected by pitches that are too high, but I am more frequently disturbed by pitches that are too low.  Some men speak in very baritone, gravelly voices, and it just sends me through the roof!  Just like with touch, my reaction to these is just like that “nails on the chalkboard” feeling.  But that’s not really so bad, is it?  It’s just a momentary flash of the willies, after all, right?  No.  The real problems start after that.

All of my sensitivities, once triggered, lead directly to incredible feelings of physical discomfort, and increased stress and anxiety.  In some cases, this can be resolved as easily as taking off the offending article of clothing, or leaving the room.  Other times, however, it begins a cycle that can be difficult to stop.  Once my anxiety starts to rise, I become more sensitive.  That leads to more reactions, which is followed by more stress and anxiety.  As this continues, I get increasingly cranky, which then leads to increased difficulties in some of those areas I’m not talking about today, navigating social interactions, and communication struggles.  It’s this spiral, caused by my hypersensitivities, that causes me the most trouble.

Not all sensory integration problems involve hypersensitivity, however.  Some involve being less sensitive than average.  In my case, I’m hyposensitive to taste.  It’s not that I can’t taste, it’s just that I don’t taste as well as everyone else.  For example, it’s been determined that I can’t taste bitter at all.  This actually proved to be a good thing for my mother who had her hands full with everything else going on with me.  Unlike, many on the Spectrum, my lack of tasting ability meant that I wasn’t ever a picky eater.  My mom put the food in front of me, and I ate it.  Not all hyposensitivities however, work toward the greater good.  There are some, like my daughter, who don’t feel pain as acutely as they should.  This can lead to dangerous consequences that require an incredible level of diligence on the part of caregivers and loved ones to prevent.

Issues like these are dealt with daily by people on the Spectrum, and those who love and care for them.  It is my sincerest hope that sharing this with you here today might help someone better understand a loved one, or feel less isolated in their own experience.  Thank you.”

:takes papers…leaves stage:

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Written by Spectrummy Mummy

April 14, 2011 at 6:55 am

19 Responses

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  1. Thank you for this insight! Every bit helps me try to understand how I can help my kiddo!

    Cgregoryrun

    April 14, 2011 at 7:25 am

  2. Great Blog! I always say that the worse part about being Jay’s mom is that I can emphasize with him but I can never truly understand what he goes through and how he feels things. Information like this really helps towards me understanding my son more. Do you find that your sensitivity to things changes as you grow older? Example, when Jay was a toddler we would spend 25 minutes just putting on his socks because if they were not just the right way he would freak out. I thought it was the seams that were bothering him and bought seamless socks… but still we had the problem. But one day… it just suddenly ended. That was the same day that he was able to walk on grass barefoot. Before then he just could not tolerate the feel of grass on his bare feet. Anyway, I wonder if it is that you become less sensitive to things or you just learn behaviors on how to deal with it. Would love to have your take on that.

    • My sensitivities haven’t really changed. I’ve always been sensitive to sound and touch etc. But my vestibular processing has declined in the last 10 years or so. I’m not really sure why that is. But I now experience a vertigo kind of sensation in certain situations where I never did as a kid. Also I can remember LOVING to spin as a kid. I could and would do it all day long. Then one day at 11 years old, I was spinning on the tire swing and got sick. Never could pin again after that. 🙂

      I definitely think that as the kids grow they can learn to cope or overcome especially with OT. I wasn’t diagnosed as a child. (It wasn’t possible due to the criteria) So I didn’t get the benefit of that. Also, I think it’s common for certain senses to dull as we age, so I wouldn’t be surprised at someone becoming less sensitive to things.

      Ha! Look at that. I told ya I was a rambling long winded Aspie. 🙂 Thanks for the kind words.

      Laura

      April 14, 2011 at 9:57 am

  3. This was really good to read, thank you for sharing this

    Casey

    April 14, 2011 at 9:26 am

  4. Beautifully said, Laura. As you know, my sound sensitivities are my greatest challenge, and I have many of the same difficulties with touch as you do. When my husband lightly kisses the top of my head, I want to scream! (I don’t, but I feel very irritated, to my dismay.) For years, I thought I had some old unresolved thing from my past that made me want to yell, but it’s just my nervous system defending itself. I know he’s being loving and affectionate, and I want to just beam at him, but my sensitive neurology has other ideas.

    I think that the sensory sensitivity is the source of a lot of acting out in kids. But things get better as we get grow, because we’re able to name the experiences and ask for what we need from others.

    Great post!

    Rachel

    April 14, 2011 at 9:38 am

  5. Thanks for sharing Laura! It’s really important for everyone to hear your story!

    Karen

    April 14, 2011 at 10:10 am

  6. Two of my favorite women in one stop!!

    Laura, this was incredibly helpful to me because I did not really think about the fact that once the offending sensory culprit was removed, it could lead to a cycle of increased anxiety that becomes difficult to get out of. I just figured if I removed the offending sensory matter it should be over. This is extremely helpful because it will give me more patience and understanding to help my son. Thank you so much for this!! You opened my eyes a little more today. 🙂

    solodialogue

    April 14, 2011 at 10:21 am

  7. Laura, you are a gift. I am so grateful for all the insight you give me! Thanks. Again.

    Grace

    April 14, 2011 at 10:58 am

  8. Laura—what you offer me is a gift—the ability to have a peek into my son’s world, how he see’s it and how things affect him. Your ability to articulate what its like for you helps me understand and in turn, help him. I value your insight deeply—thank you–L

    Lizbeth

    April 14, 2011 at 11:46 am

  9. Thanks for this post. Sending it to a friend.

    smallbitsfs

    April 14, 2011 at 12:58 pm

  10. Two of the people that I look to for insights all in the same place? It’s like this post is my Reese’s Peanut Butter Cup!
    Laura – you have always given me amazing insight into my son’s world. I love every word that you write, and this is no exception. Thank you Spectrummy Mummy for sharing her here!

    akbutler

    April 14, 2011 at 7:17 pm

  11. I have ADD and we have sensory issues too. I CAN sleep on flannel sheets but I HATE it, especially on the pillow. I, too think that flannel feels scratchy. I also have hyposensitive taste so I like big flavours and I will eat anything as well.

    The only thing that gives me the willies to talk about is those wooden spoons that come with ice cream, or wooden popsicle sticks…in my mouth…UUUGGGGHHHHHHH. Gross.

    I hate the feeling of my upper arm lightly brushing someone else’s skin to skin and i don’t mind a light breeze but I HATE fans that go back and forth because I can’t have the air be intermittent. Teeny tiny ribs on things make me nuts when they touch my fingertips and my starbucks cup always has to have a sleeve cuz I hate the feelings of the cups. Light rain feels like needles on my face and body…or like light spray from a spray bottle. I had to wear a TIGHT shirt to school under my clothes in highschool or else I felt my world was falling apart…I was ADHD then.

    There’s loads of sensory things that I DO love too…I’m constantly sensory seeking.

    I don’t feel that anxiety that goes along with it. It bugs me and that’s the end of it. I can’t imagine having to live with the anxiety that it gives you.

    My son who has autism is the person who showed me my own sensory issues, I have a lot. He has more and is WAY more affected by it.

    Blessing to you and thank you for sharing with us. Great post. The world needs to know about sensory issues!

    The Informal Matriarch

    April 14, 2011 at 10:33 pm

  12. Thank you all, so much, for the warm reception. You’re all very kind.

    Laura

    April 14, 2011 at 11:04 pm

  13. That was brilliant as usual Laura….thank you so much for mor incredible insight!
    I can see a LOT of my Harley listed in those sensitivities. He hates a lot of the same things that you do.
    And seeing what an amazing adult you’ve become gives me wonderful hope for the future 🙂

    Fi -From the Madhouse-

    April 18, 2011 at 3:05 am

  14. I’m so grateful to have found someone’s “experience,strength and hope”. I who have been raised in the “family disease” of alcoholism, drug addiction, food addiction, various emotional and pervasive developmental disorders “know as few others do”.

    I have recently entered into a relationship with a woman who strongly presents numerous sensory spectrum issues. Coming from my family background I feel at home and uniquely qualified to be in this relationship. I told her when she commented on her “querkiness” that “I feel more myself when I am with her than when I am by myself”. Years of family recovery and faith in a Power Greater Than Myself tell me this is not out of a sick need to enable or control. My own neurology is totally unique. If I could sell tickets to inside my mind my family wouldn’t have to work till the end of time. Three ring circus is an understatement.

    I told her three words I don’t think she ever expected to hear. I pray for the strength to “always do the next right thing.” Thank you so very much.

    Shoreboy

    May 16, 2011 at 10:42 am

  15. Sensory comforters for autistic children can be in the form
    of something fun, like the Cuddleuppets (as shared by Wendy at her Savette.com
    website). You can sneak a peek at these soft & snuggly comforters at http://handi-dandi-crafts.com.

    Will K

    February 6, 2014 at 6:13 pm


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