Sensory Overload, Awareness and Autism

My 10-year-old autistic daughter, Emma, woke up in the middle of the night crying. Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack. Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood. I "got it" in a way that until now I had not.

For years, Emma has periodically complained about her ears. When she does, we rush her off to various doctors and specialists, only to be told that there is "nothing wrong." But those words are being said by neuro-typical doctors and specialists; and to a neuro-typical there is, indeed, nothing "wrong." But Emma is not neuro-typical -- what appears fine to us does not feel fine to Emma. She is particularly sensitive to the changing air pressure. She feels unbearable pain in her ears. We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado. Emma loves swimming. She particularly loves jumping off the diving board and swimming underwater. I could be wrong, of course, but my guess is that the pressure is worsened with those activities.

Last night, by the time I'd woken up and gone to her, my resourceful husband Richard had already calmed her down. When she saw me, she came to me and wrapped her arms around me, her cheeks still damp from her tears. She preempted me by saying, "Ah, baby. I know, I know. Your ears are hurting." Her voice sounded almost exactly like my own. She was using the words I use. She was saying those words with the same tone I say them.

I held her for a few seconds before following her into the bedroom. I urged Richard, bleary-eyed and exhausted, to go back to bed while I sat with Emma. "Have to go see nurse Mommy," Emma said, stroking my arm. "Go aaaaahhhhhh!" Emma made a pretend cry. "Mommy come! Mommy come. I need help! AAAAAHHHHH!" Emma continued in a soft voice, reenacting what had happened just moments before. "Daddy says -- you have to blow your nose. Oh, I know, I know it hurts." Emma nodded her head up and down. "Mommy's here! It's nurse Mommy!" Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb.

As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair, I wondered what must it be like to feel the sudden shock of pain caused by something you cannot see or stop. No matter how much you cry out for help, it isn't lessened. I tried to imagine. How upsetting to be the only one feeling it. How disorienting. As I sat with her, I tried to become aware of any pressure in the air. I could feel it in my ears, not painful, but uncomfortable, building the more I concentrated. I noticed how my heart beat as the pressure increased. I could feel some anxiety with my growing awareness. I took a few deep breaths. What would it be like if I felt this all the time? How distracting it must be. What if I felt this, but much more intensely? What if I felt this pressure, but the pain was excruciating? How terrifying it would be, all the while hoping someone could remove what was causing the pain.

Only I couldn't.

For more on my daughter's journey and mine through her childhood of autism, go to: Emma's Hope Book.

For more by Ariane Zurcher, click here.

For more on autism, click here.

 

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Comments

[stemcellorg]

04:58 PM on 04/05/2012

This is a lovely demonstration of how caring parents really struggle to empathise with their neuro-atypical children; thank you Ariane. It might interest you, and your readers, to know that Rutgers University Cell and DNA Repository (RUCDR) has established a stem cell repository on behalf of the National Institutes of Health in order to help scientists study myriad neurological disorders including autism. http://stemcelltreatments.org/stem-cells-for-autism/ Perhaps it won't be too long before being told by doctor after doctor that 'nothing's wrong' will be replaced by an atmosphere of understanding and positive action.

[Ariane Zurcher]

06:30 PM on 04/10/2012

Thank you for providing the link.

[Andrew Raymond]

08:23 PM on 04/04/2012

As an Aspergers person and a late diagnosis, I haven't even been considering how sensory overload is affecting my life until relatively recently. But one of the most significant things I've found is that I'm VERY sensitive to 'disorganized' noise -- such as you encounter when shopping. I've found that wearing earplugs to do the grocery shopping, while it doesn't completely alleviate the social phobia, it certainly reduces it to a much more manageable level. Even when I find myself overtly anxious, I have found that my impulse purchases have been much reduced.

[Ariane Zurcher]

10:41 PM on 04/04/2012

It's interesting that you say this. I am just reading Rachel Cohen-Rottenberb's memoir Blazing My Trail - in which she talks about having to do the exact same thing. I've never thought about the idea of anxiety in relation to impulse purchases, but it makes a great deal of sense.

[Andrew Raymond]

12:21 AM on 04/05/2012

Yes, over the years before I was aware of Aspergers, I developed a number of addiction-type self-soothing behaviors, including spending. :-).

In talking with other autics and aspies, other big sources of overstimulation are brushing teeth and showering.

[artistic1025]

12:23 PM on 04/04/2012

If you have a child with developmental Disabilities in Florida, and are looking for a reputable organization to place them please look at reynagrouphome.org
If this organization does not impress you I do not know what will.

[haferba]

11:19 AM on 04/04/2012

It is a torture to watch my sensory-seeking son battle with the anxiety/pain/discomfort. It is devastating to my child and his family that insurance companies will not cover sensory therapy unless they are forced to, and even when forced to by law, they are able to capriciously restrict access to therapy. All this means more pain physically and emotionally for the sufferer and their family members.

[Ariane Zurcher]

12:54 PM on 04/04/2012

Thank you for commenting. I am always surprised now, when I hear of any treatment, methodology or intervention that does NOT take into account the massive sensory issues our kids are so overwhelmed by. Until more awareness is brought to this, insurance companies will continue to ignore the need and will refuse coverage in getting those needs met.
Ugh.

[Indiegirl99]

02:01 AM on 04/06/2012

I am not on the spectrum but when I was young, I was diagnosed as having severe autism. I did not talk, make eye contact etc. What I believe I did have was extreme sensory integration disorder or something similar. Normal talking voices could feel like screams in my ears, my cloths were constantly scratching and itching me. The whole world assaulted me and overwhelmed me and so I retreated deap into myself. When I was 3 my mother found a speech therapist who thought she could help and one of the things she did for me was to help me deal with sound. My memory is that the desensitized my hearing but its been so many years and I was so young, I am not sure exactly. Anyways, once my sensory issues were being dealt with, I began to talk and interact with the world. Now you would never guess I had any issues as a child. My one remaining problem is that I can not tune out noises. If the neighbor's dog for instance is barking, I will hear every single bark while everyone else doesn't notice beyond the first couple of minutes. Certain sounds can also drive me crazy like a weed whacker but other than that, thankfully my sensory issues are gone. I wish you good luck with your daughter!