Growing Up Different: Temple Grandin’s experiences with autism (and mine)

The whole article speaks to me about my experiences raising my autistic son, but this section especially:


I pulled away when people tried to hug me, because being touched sent an overwhelming tidal wave of stimulation through my body. I wanted to feel the comforting feeling of being held, but then when somebody held me, the effect on my nervous system was overwhelming.

Small itches and scratches that most people ignored were torture. A scratchy petticoat was like sandpaper rubbing my skin raw. Hair washing was also awful. When mother scrubbed my hair, my scalp hurt. I also had problems with adapting to new types of clothes. It took several days for me to stop feeling a new type of clothing on my body; whereas a normal person adapts to the change from pants to a dress in five minutes. Many people with autism prefer soft cotton against the skin. I also liked long pants, because I disliked the feeling of my legs touching each other.

Squeeze Machine

Many autistic children will seek deep pressure. Many parents have told me that their children get under the sofa cushions or mattress. I craved deep pressure stimulation, but I pulled away and stiffened when my overweight aunt hugged me. In my two books (Grandin and Scariano 1986 and Grandin 1995), I describe a squeeze machine. I constructed to satisfy my craving for the feeling of being held. The machine was designed so that I could control the amount and duration of the pressure. It was lined with foam rubber and applied pressure over a large area of my body.

Gradually I was able to tolerate the machine holding me. The oversensitivity of my nervous system was slowly reduced. A stimulus that was once overwhelming and aversive had now become pleasurable. Using the machine enabled me to tolerate another person touching me. A partial explanation for the lack of empathy in autism may be due to an oversensitive nervous system that prevents an autistic child from receiving the comforting tactile stimulation that comes from being hugged. I learned how to pet our cat more gently after I had used the squeeze machine. I had to comfort myself before I could give comfort to the cat. It is important to desensitize an autistic child so that he/she can tolerate comforting touch. I have found that if I use my squeeze machine on a regular basis that I have nicer images in my dreams. Experiencing the comforting feeling of being held makes nasty or mean thoughts go away.

My son was a very happy, huggy baby and toddler. Then at about age 2, the typical time for autistic differences to become obvious, he started showing signs of sensory hypersensitivity to noise, light and textures as his speech acquisition slowed. By the time he was 4 he no longer wanted to be hugged much, and definitely didn’t want to be kissed, but I used to insist on hugs several times daily anyway, knowing that it was the only way to desensitise him at all. (And he still did snuggle into them happily at times, if he was upset about something else.)

By age 6 he insisted on no hugs. At all. It broke our hearts.

But to physically dominate him into forced hugs would have felt like we were assaulting him, so we acquiesced. I continued to work on desensitisation by actually massaging him, getting him to lie down and I would rub his back, or one limb, quite firmly. He could cope with that, even enjoyed it, because it wasn’t his whole body being enveloped by a hug.

At age 10, a time when he was especially anxious and sad about not having friends, we had a talk which I can’t remember in detail, but I just told him what hugs meant to neurotypical people (a term he was just starting to understand with respect to autistic brains processing stimuli differently). I told him how much his daddy and mummy and sister missed getting hugs from him, because it was a sign of affection that actually stimulated good chemicals in the brain, and that made people feel good about getting hugs and also feel good about the people who give them hugs. I told him if he could get back into the habit of hugging, even just a little one-arm hug, then he would get those good chemicals inside his brain too, and it would make him feel happier.

He decided to give it a go. I cried buckets that night when he gave his Dad a good-night hug for the first time in 4 years.

A few days after he made a point of having goodnight and goodbye hugs, he told me I was right: they did make him feel better, thanks for that, but I still don’t want any kisses mum. I promised to do my best, but could he try not to get too upset if every now and then during a hug I forgot and gave him a little smooch because I loved him so much? He decided the occasional smooch on his hair would be OK, because he didn’t really feel it there. I gratefully took that concession and haven’t abused the privilege.

He’s thirteen now. We get and give hugs at every parting and most greetings. They’re still slightly stand-offish hugs, his body angled away from full chest-to-chest contact, but they are real and frequent affectionate hugs.

And since starting high school, he’s got friends. He’s so much happier now than he was during the period he was refusing hugs. It was so worth persisting with tactile desensitisation, and I’m so glad my physio training meant that I knew how important it was.

Categories: health, Life, relationships

Tags: , , , ,

6 replies

  1. I’ve always found the subject of autism fascinating, since I read _The October Child_ (one of those school magazine type books). What interested me when I started reading what you’d written above was how the distinction might be made between a supersensitive child and an autistic one — or are they possibly part of the same spectrum? It struck me that some of the characteristics you mentioned above might be shared by a shy or shrinking violet-type child.
    But anyway how difficult…and how lucky your son is to have a physio for a mum!

  2. Tigtog, it’s difficult to read this without shedding a tear. Thank you so much for sharing it. I know very, very little about autism and I hope you share more. (I’d always presumed autistic people didn’t, in fact, experience emotion very much!) I can only imagine a million little heartbreaks you must have experienced. Great to learn he’s happier and has friends.

  3. The hypersensitivity is an interesting issue – there are certainly people with sensory hypersensitivity who aren’t autistic, but when it’s clustered with the combination of communication difficulties and abnormal empathic response it’s a strong diagnostic sign.
    As to experiencing emotion, it’s really only the most disabled autistics, those without language and who totally avoid interaction of any type, who appear to be largely emotionless, although they certainly show fear and anger in unfamiliar or frustrating situations, and severe autists even laugh at pleasurable sensations. Their lack of expressing other emotions may be simply due to insufficient interaction to provoke other emotions, and of course lacking the language to express themselves.
    The impression of a lack of emotion in higher-functioning autists is actually a lack of affect, and it’s tied into the abnormal empathic responses: tests have shown that autists simply don’t get the same emotional response from other people’s facial expressions. An angry face provokes only a weak neural response, whereas in neurotypicals the empathic response to facial expressions provokes a large neural response. This neural response to facial expression works for all emotions, and is part of why people enjoying each other’s company tend to mirror posture and expression.
    So, with a brain that simply doesn’t fire in the same way in response to a smile or a frown, autists don’t mirror such expressions back as promptly or subtly as neurotypicals do – they either underdo or overdo, either of which makes others uncomfortable, and gets in the way of forming friendships.

  4. My brother quite likes hugs too now, but we have a photo of him as a toddler being held by me (his big sis) and screaming, which was pretty much the way it went for years. We didn’t know anything about desensitising but thankfully my parents persisted with physical affection with him and it seems to have paid off.

  5. Thanks for this post, Tigtog – it’s really interesting.
    Temple Grandin is a most interesting thinker/writer (I believe, mostly from second hand knowledge, rather than know from reading her. For my sins.)

  6. Kate, I think a lot of parents/families persist with physical affection because it’s fairly obvious that unless it’s imposed the autistic child will never become comfortable with it (apart from the normal natural affectionate impulses all families have anyway).
    Where my training helped me is I knew how to isolate desensitisation stuff to just one limb at a time so he wasn’t overwhelmed and it didn’t feel like an assault, which is something harder for the average bear to figure out.
    Temple Grandin’s writing provokes neurotypicals to examine their sensory experiences differently as well as providing points of recognition for fellow autists. She’s an important and distinctive voice.

%d bloggers like this: