Expert: Dr. Sharon A. Mitchell - 6/12/2011

Question
QUESTION: My daughter is 8. We received her diagnosis of Asperger's with ADHD and Anxiety symptoms this past week. Prior to this she was being treated for ADHD.
She is in her 5th year of competitive cheer. As she gets older it is becoming more difficult for her coaches to accept her nuances. It is more of the fact that they aren't used to it and think it is misbehaving vs something she has little control over.

We have asked her coaches this year to meet with us to give them an idea of what is going on. What we don't know is the best approach to share information about her situation with them. I'm fairly positive that they have little or no personal experience with this condition. How do you broach the subject with a coach and share helpful information. Her team this year is an advanced group and is quite large approaching 32 girls between 2nd and 5th grade. She has competed at this level last year successfully with a small team under 20 girls.

ANSWER: I'm impressed that a little girl with an anxiety disorder would be able to do so well in such competitions. This must be something she really wants and you must be truly supportive parents.

What exactly are her nuances? Does she have difficulty waiting her turn, following directions, dressing the required fashion, getting along withnothers on her team, or traveling? Other than the last item, there may not be many accomodations this sport will provide.

What is exactly that you would like the coaches to do? If it's to have more patience with your little girl, then explaining about Asperger's and ADHD might help. Letting them know about anxiety disorders may help them understand why she may become nervous than other girls before competitions.

But even if they understand what may be behind the behaviors they see, they may not know what to do. that is where you would come in with your suggestions.

Kids with autism spectrum disorders often do not take in what they hear as readily as what they see. So, if a move was explained then your daughter asked to be the first person to demonstrate what was just discussed, she may have trouble. But, if she was near the end of the line and had the opportunity to watch many others go through the moves, she might perform much better.

If she is tactile defensive or has other sensory issues, costumes may be a problem. You may need to ensure that scratchy tags are removed. Often in groups, wearing the identical uniform is crucial. this may be something youndaughter mat just have to live with if she wishes to continue to compete.

Do the loud noises bother her? Ear plugs could help and some are quite discrete. sometime weighted products like a vest or ankle weights can make other sensory sensitivities more tolerable, although these items likely would not be allowed under competitive dress.

Is there extra tutoring available is she needs additional time or more individualized coaching?

Will more travel be required as she progresses through the higher levels? How does she react to being in unfamiliar places - driving, eating, sleeping, rooming with others? Does she tire easily and require more sleep than others her age? Socially does she handle the demands of being part od the group?

Social stories may be a technique that becomes more and more important to help her cope.

If the restrictions of competing become more difficult for her to tolerate as the level of competition increases over the next years, would there be a way for her to still be involved with group without competing?

Sometimes kids will overcome difficult situations to participate in something they are truly passionate about. This might have to be a choice your little girl has to make.



---------- FOLLOW-UP ----------

QUESTION: She was diagnosed as high functioning.
Her nuances are:
Attention - Easily distractable. Much like ADHD. That is what she had been diagnosed as prior and was under treatment for for 3 years.

Anxiety - It is around unfamiliarity with situations and large groups of people.
Oddly enough she is right at home out on the stage in front of 1000 people. Put her with 100 people in a room she gets shy. Make her interact with a larger or small group she gets very uncomfortable quickly. Even with long time "friends", team mates, etc.

The main thing we want to do with the coaches is to help give them a better understanding and ways to approach her and what is going on with her. She doesn't always change with instructions given. Like going from round-off, back handspring for the first set of passes to front walk over, roundoff, back handspring. She will forget the change and continue to do the previous set of instructions. When she gets frustrated she tends to shut down.
When she gets scared she will make herself not perform appropriately and may intentionally sabotage what she is doing by for example bending her leg so that she cannot be put up in the air. Or rebounding incorrectly so that the coach can spot her through a back tuck (a skill she is working on learning).

I think I want to try to help her coaches understand that her not listening or playing in the mirror and not looking them in the eyes is not being disrespectful it is that she really has no control over it yet.

I was also trying to figure out the best way to explain the disorder to them in plain english. Not something that requires research to understand

Answer
Attentional issues are common in kids with Asperger's and high functioning autism. It's also not uncommon for kids with Asperger's to have been previously diagnosed with ADHD.

Anxiety is also often part of life for a child with AS. With all autism spectrum disorders, the person will have some difficulty making sense of the world. When things around you are confusing, when you're not sure what will come next nor what will be expected of you and when sounds, smells and touches may be bothersome, it's hard not to be anxious.

Socialization is another area that can be hard for someone with ASD. Small groups require social interaction. When your daughter performs in front of a large  crowd, she may go through her routine, but not need to interact; when with a couple people or a small group, more is required of her.

When children are small, their play tends to center around things. As they get older and their social world grows, they may want to stand in groups and talk rather than focus on a common object or game with set rules. This change would likely be harder for your little girl - not impossible, but just harder for her.

Are you using social stories to help your daughter with social skills and new situations? If you're unfamiliar with the term, here is some good information: http://www.polyxo.com/socialstories/introduction.html. Here is a sample soccer social story: http://www.polyxo.com/socialstories/ss0023.html and here are some general social stories you may find applicable: http://www.polyxo.com/socialstories/. Even if none of these apply to your daughter's situations, they give you the idea of how to write appropriate social stories. I'd suggest you buy a binder and keep adding to your trove of social stories. Although the idea sounds simple, social stories really do help. I find that once they get used to the idea, kids seek out their binder of social stories on their own and take comfort from them.

Auditory processing can be another area of weakness for people with ASDs. While her hearing may be just fine, she may have some difficulty quickly making sense of what she hears. This difficulty would increase in the presence of background noise or other disruptions. She may take several seconds longer than other kids to process the oral instructions. I think in my previous answer I suggested that she may do better when allowed to stand back and watch others perform the actions rather than being expected to respond instantly herself.

She may have some trouble with short-term memory, especially sequential memory. Do you find at home that if you give her three instructions, she'll return having done only the first or the last directive you gave her? This may also be true when her coach gives a string of instructions. She may default to something that was previously well-learned or do just some of the required task, the part she remembers.

While these things may be hard for her, that does not mean she can't do them. She can learn little tricks and strategies to help herself. When she's given an oral instructions, try having her repeat those words over and over to herself in her head. Have her try to visualize each move in her mind or herself or the coach doing these moves, in that sequence.

If you can get from the coach the string of moves she will have to learn, make your daughter a visual (a sketch or picture) of the move or move sequence and practice that way with her. Couple the picture with it's label, so she'll gradually associate that picture in her mind with the words the coach utters.

Is there an older, more experienced cheer competitor you could hire to give your daughter private tutoring?

The shutting down, tuning out, not looking and playing in the mirror may be the ways she is telling the adults that she's had enough or is in over her head.

Shutting down shows that your little girl is on overload. Would she be able to work out some sort of signal with the coaches to indicate when she needs a couple minutes break or when she's lost and needs help? I can understand her purposely sabotaging her performance to get out of a situation where she feels overwhelmed. That makes me wonder if this is actually the sport for her.

Often sports that are more individually based work better for kids on the autism spectrum (including high functioning kids with Asperger's), things such as gymnastics, martial arts, figure skating, track and field, etc. where she must concentrate on where her own body is in space rather than her own plus that of her teammates.

If you want the coaches to understand about Asperger's, an unbiased explanation may be best. If you provide written material you'd want it to be short and take no more than perhaps ten minutes of the coach's time at the most. Here are a couple such books that I'd suggest:

- Asperger's Huh (http://www.amazon.com/Aspergers-Childs-Perspective-Rosina-Schnurr/dp/0968447309/).

- What It Is To Be Me (http://www.amazon.com/What-Be-Me-Asperger-Book/dp/1593521995/ref=pd_sim_b_3).

- Can I Tell You About Asperger Sydrome (http://www.amazon.com/Can-Tell-About-Asperger-Syndrome/dp/1843102064/ref=pd_sim_).

While this next one is not a ten minute read, it might be one that you as parents would find useful. I really like it; it was written by a thirteen year boy with Asperger's: (http://www.amazon.com/Freaks-Geeks-Asperger-Syndrome-Adolescence/dp/1843100983/r).

Below are links to a few articles on kids with AS, sports and coaches that you may find helpful:

http://www.metrokids.com/MetroKids/April-2011/Young-Athletes-and-Asperger-Syndro

http://www.forparentsonline.com/page/content.detail/id/500070/Asperger-s-Syndrom.

Dr. Tony Attwood is one of the leading experts in Asperger's  Syndrome. At this next link he goes briefly over the diagnostic criteria for the diagnosis then his interpretation. This might be a one page sheet you could give a coach: http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=62&It.

I hope this is enough information for your initial talks with the coaches.

Best wishes,

Dr. Sharon A. Mitchell