The “Silly Dance”

Hand flapping may occur in combination with movement, such as bouncing, jumping and/or spinning. My daughter usually hums while she flaps. Occasionally, she’ll also kick her legs but that has waned. We never really pointed it out to her and she seems to have never noticed herself doing it. Once we tried to get her to realize what she was doing and her reaction was like “I don’t know what you’re talking about”. Recently she shocked us when after hand-flapping she said “I was just doing my ‘silly dance’”. Not only were we taken aback by this unexpected self-awareness but I immediately got hung-up on the name she had for it. I seriously doubt she came up with it herself; someone at school must have. She flaps constantly – is this an ongoing nickname? Is the name supposed to be funny or mean?

I’ve recently met some adults with Asperger’s Syndrome who constantly “stim” (self-stimulation) – flap, tap, bite things, rock, and make various noises – and it was, I’m ashamed to say, an uneasy and uncomfortable situation. I simply wasn’t used to seeing it and it was very distracting. Aside from realizing that I need to be a lot more sympathetic, it seemed like we should probably address this sooner than later in order to help her chances at social acceptance since the world is filled with people who are unsympathetic to those that are different.

Why?

Autistic stimming behaviours are self-learned and are used to either increase stimuli or to help decrease or shut it out. These behaviors along with the testimonies of various autistic individuals, have led researchers to believe that those with autism are either severely over-sensitive, under-sensitive, or both to outside sensory stimuli (hence the term “sensory integration dysfunction”). Typically, hand-flapping occurs when the child is happy or excited. I used to think my daughter also did it when she was anxious although I don’t think that is true anymore. There could be other reasons for it also.

A profound first-hand account of hand-flapping is featured in an article called “A Boy, a Mother and a Rare Map of Autism’s World”. In it, Tito Mukhopadhyay, a 14 year old boy from India with severe autism explains why he flaps his hands like this: “I am calming myself. My senses are so disconnected, I lose my body. So I flap. If I don’t do this, I feel scattered and anxious. I hardly realized that I had a body. I needed constant movement, which made me get the feeling of my body”. Tito’s nervous system receives so little input that he cannot sense a connection with his own body. His hand flapping is his attempt to calm himself and gain a sense of his body’s existence.

Approaches

If the goal is the try to reduce some of our daughter’s more socially inappropriate behaviors, then what should we do (or not do) about her hand-flapping? She obviously needs to do it and it would be cruel to deny her this. Does that override any type of intervention?

What follows is a brief discussion of three different approaches I have comes across. Since all kids are different and have different needs and in varying amounts, I stop short of concluding what is the best way to deal with hand-flapping since what works for one person may not work for someone else. It’s up to you to figure that out and to decide what you think is appropriate…

1. One Occupational Therapist (OT) said that she will probably grow out of it. Given my experience with the adult flappers, I’m not completely convinced of that. Nonetheless, the OT felt that eventually social pressures will force her to change her behaviour on her own. This isn’t very comforting to me either. Although some kids on the spectrum will go through life mostly oblivious to social cues or pressures, my daughter isn’t like that. I’d prefer to intervene and to try to help her than to do essentially nothing and leave it up to insensitive kids to force her to change.
2. A second option, suggested by other parents of autistic kids, is to try to manage it by setting times and places for when the child is free to flap and stim. I could be wrong (it happens a lot), but I don’t think this would be appropriate for my daughter because I think it is a real-time need for her and not something that she can queue up for a while to deal with later. You can check out this story of how trying to manage hand-flapping led to behavioral problems for a child.
3. Finally, another OT suggested that we start getting her to recognize that she is doing it with the ultimate goal of getting her to change her behaviour to a more socially-acceptable alternative. This sounds reasonable but I’m a little afraid that I may do a poor job of it and make her self-conscious or lead her to an alternative behaviour that doesn’t fully satisfy her need. Could she really undo 4 years of flapping and be willing to give it up for, say, a squeeze toy? I think the key to make this approach work would be to take both steps very slow.

Personally, I’m leaning towards the third approach but I want to make sure I got my game plan all figured out first. For example, I need to come up a nice way of pointing out to her that she is flapping without making her think she is doing something wrong. Also, I would need to experiment with different alternatives to see if anything reduces her flapping. I’ll let you know how it goes…

Final Thoughts

Certainly, these approaches do not represent all the possible ways to deal with hand-flapping. I’m interested in knowing what others may have tried – successfully or not – to deal with flapping or other types of stims. For sure there will be many who simply believe that doing anything at all would be cruel. As Eugene Marcus says on his website: “This whole series of ‘treatments’ designed to make me look more ‘normal’ didn’t succeed in doing that, but it did succeed in instilling shame and fear.”

I’m normally a very careful and details-oriented person but after 5 months of implementing a casein-free diet for my daughter and 3 months of implementing a gluten-free diet also, my wife and I discovered that we’ve unknowingly been feeding her foods that have hidden casein and gluten in them. It’s brutal enough trying to do this, but discovering that there have been enough infractions to basically nullify the experiment is really discouraging. You could probably get better advice from someone with more credibility than I but I’ve made enough mistakes and learned enough during this painful time to be able to come up with a list that I believe could help others going through the same thing. Here it is:

1. Lower your expectations for success. As stated in the introduction above, it seems as though most autistic people benefit from this diet. Hope is a wonderful thing, but my daughter doesn’t seem to be one of the lucky few getting anything out of this diet. Your child may not be one either.

2. Get it over with. Since my daughter is a very picky eater and pretty much only ate food with gluten or casein in it, I was worried that we wouldn’t be able to pull it off. Like anything, people find a way to adjust and everyone involved did just that. There will never be a good time to start so just set a start date and end date (at least 3 months I hear is recommended) and stick to it. If it works then that’s great. If not, then at least you tried what seems to be the most recommended treatment for autism.

3. Ramp up. Try introducing alternatives and move towards the full diet slowly during the weeks leading up to it. It’s going to take a lot of education and trial and error so avoid the big bang approach.
                      
4. Don’t get hung up on finding substitutes for everything your child used to eat. Not only will it cost you a fortune for alternative/specialty flours and foods, but the taste will consistently disappoint you. I have baked numerous loaves of bread and various baked goods and my daughter rarely would even try them because they either looked or smelled a little different. I can’t blame her – rice-based goods don’t come close to wheat-based goods in terms of taste and texture. Your best bet is to simply increase the good and easy foods like fruits, vegetables and meat that hopefully are already in his/her diet. Be careful of the temptation to introduce junk food to make them feel better and because you can’t think of anything to give them at times.

5. Be diligent. Supposedly a very minor infraction every 5 days is enough to nullify the experiment. Learn to read ingredients and spot hidden sources of gluten and casein. Often you’ll have to call the manufacturer to be sure since gluten or casein could be present in things like modified corn starch, natural flavors, artificial flavors, or even be off-label because although it was used in the manufacturing process, it was not an official ingredient. I didn’t know about vinegar and have mistakenly given my daughter ketchup many times. I have also used vanilla (which is not gluten-free) in numerous baked goods. It may be best to avoid food processed in a facility that processes dairy or wheat products. Look out for cross-contamination in your kitchen also. Kosher symbols are a good guide but I’m not sure if they are as stringent as we are supposed to be. For a list of GFCF items, check out http://www.talkaboutcuringautism.org/gfcf-diet/autism-diet-gfcf-foodlist.htm. Warning – I believe there are items on this list that shouldn’t be!

6. Warn teachers and school staff. Kids like to share and trade snacks and it’s reasonable to assume that a child on this diet may not turn down the opportunity to eat something they shouldn’t when you are not around. Don’t forget about Halloween, Pancake Day, Christmas (or holiday) parties, Valentine Day, Easter, pizza day(s), birthday parties, and any other times food may be served at school. Maybe you could make arrangements in advance to have alternatives available for your child (ideally while not making him/her feel so different). Ask the school to warn you.

7. Everyone in the family should go on the diet. Modeling is very important. It’s easier to get your child to adopt the diet if everyone else if doing it. Not only will this not make your child feel so different but you may find others could benefit from the diet also. I was surprised to discover that my digestion improved when I cut out dairy.

8. Relax. My daughter is more responsive when I am calm and am not putting pressure on her to eat (something I’m not good at). I’ve heard that it could take up to 15 or more attempts to get a child to accept a new food. Follow the old protocol – warn, small changes, no pressure, many attempts, encourage, reward, blah blah blah. Your (extreme) patience will be rewarded.

9. Get help. Getting them to eat – especially picky eaters – is going to be a challenge and will take time. Good nutrition will be a secondary concern initially, so there may be some important nutrional gaps you should address with supplements. We don’t want to do any harm so it may be a good idea to consult a nutrionalist and/or doctor for advice.

10. Educate your child. I don’t know how to explain a “potential food sensitivity” to my 5 year old daughter who doesn’t even know she has autism, but she does get the idea that wheat and milk might be harming her somehow and because of it, she is embracing the diet. She is learning the diet language and even asks to make sure that something doesn’t have wheat or milk in it. Kids are always smarter and more capable than we think.

…

My daughter didn’t have any noticeable digestive issues before we started and we have not realized any significant changes in her because of this diet yet. I am very interested in hearing about some real success stories about people on this diet, particularly, how long it took to notice a difference, what those differences were, and if there were any digestive issues before the diet began.

Good luck!