It is important to remember that a given individual with WAGR syndrome may or may not have or develop the conditions listed below.
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Coping with Challenging Behaviors
Kelly Trout, RN, BSN
Rhonda Sena, M.Ed
Some individuals with WAGR syndrome have conditions which affect their behavior. These conditions include: autism, autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADD/ADHD), anxiety disorder, depression, and obsessive-compulsive disorder (OCD). Other conditions which can also affect behavior include Central Auditory Processing Disorder and Sensory Integration Disorder. These conditions can cause big challenges for a person and his family. Some of the most difficult of these challenges are tantrums, “rages,” meltdowns, and destructive or aggressive behavior. In a series of articles, we’d like to offer some suggestions for dealing with these behaviors.
The All-important First Step: Diagnosis
It’s hard to fix a problem if you don’t really know what’s causing it. So it’s critical to make sure you have a diagnosis first. Don’t be tempted to skip this step, hoping that your child’s explosive outbursts will stop, lessen, or will just go away on their own. Like most conditions, these behaviors respond best when they are recognized early and treated appropriately.
Important note: individuals who are non-verbal or who have difficulty communicating may express pain or illness through their behavior. Physical discomfort or possible illness should be considered whenever there are sudden or unusual changes in such a person’s behavior.
It is common for parents to be told that their child’s explosive or aggressive behaviors are simply “the way he is,” and that little or nothing can be done. The truth is, a wide variety of positive, potentially successful options for treatment exist.
It is very hard to be told that your child has a behavior disorder, but if you suspect there’s a problem, getting a diagnosis can open the door to services, solutions, and safety for your child and for your family.
Making sure the diagnosis is accurate is also critical. On the surface, challenging behaviors may look similar in children with ADD/ADHD, autism, anxiety, and obsessive-compulsive disorder. But effective treatment can be quite different for each. In fact, sometimes what works for one disorder can make another disorder worse.
Keep in mind that accurate diagnosis is often a process of elimination. This can be very frustrating, but it’s more than worth the time and effort. You can facilitate the process by educating yourself about the signs and symptoms of behavioral and psychiatric disorders associated with WAGR syndrome (http://wagr.org/behavior.html)
The more you know, the more you can help your child’s doctor or therapist pinpoint the problem.
Diagnostic Evaluation
The best method of evaluating a child for behavioral or psychiatric disorders involves a “multidisciplinary team” approach. Such a team may include a psychologist, neurologist, neuropsychologist, psychiatrist, speech therapist or other specialists, as well as the parents and teachers or other caregivers. Some universities and regional or teaching medical centers offer team evaluations, and your pediatrician may be able to refer you to one of these. When this is not possible, specialists can be consulted separately, but a “team approach” can still be achieved by insuring that everyone communicates with each other.
Now What?
Once you’ve got a diagnosis, you can begin to look for the information, professionals, and programs that can help.
Behavioral therapy is available for some conditions, in some communities, and your child’s psychiatrist or psychologist may refer you to such a program. On the other hand, you may have to find this kind of help yourself. Here again, learning about the disorder yourself can alert you to what type of therapy might help and where you might find it.
If your child is school age, his behavior disorder will very likely impact his education. A Functional Behavior Assessment (FBA) will help you and the IEP team develop interventions to address problem behaviors at school. Talk with the school and his teacher about including this assessment as part of his next IEP review or request it immediately if behavior is escalating. Behavior interventions that are specific to his diagnosis need to be included in his education plan.
Finally, many national, regional and local support groups sponsor behavior seminars and training specifically for parents. These seminars and training sessions can be tremendously practical and helpful. Disability organizations, autism support groups, and mental health groups are great resources. Call and ask what they may have available for parents in your area.
Upcoming articles:
Patterns and Triggers, Behavior Modification Therapy, Medications
Remember The Truth
It’s incredibly difficult to deal with a child whose behavior is destructive, aggressive, embarrassing. Tantrums and rages can happen anywhere, anytime, and can make parents feel desperate, ashamed, and reluctant to leave the house or take the child out in public. Remember that you and your child are not alone. Lots of WAGR parents share your challenges, and know just what your life is like. Remember, too, that your child’s behavior part of a condition associated with WAGR syndrome, and not a reflection on you. It’s especially tough to remember these things when strangers (even family members) make rude comments or criticize your parenting abilities. Hold the truth close, gain strength from your fellow parents, and take pride in the progress that you and your child are making.
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Some individuals with WAGR syndrome have developmental disability, disorders of behavior and/or psychiatric conditions.
These conditions may include:
Anxiety Disorder
Attention Deficit Disorder (with or without hyperactivity)
Auditory Processing Disorder (also called Central Auditory Processing Disorder) - CAPD
Autism
Autism Spectrum Disorder - ASD
Depression
Developmental Disability - also called Learning Disability [UK] Intellectual Disability [Australia, Europe, Canada] and Cognitive Impairment)
Obsessive-Compulsive Disorder - OCD
Pervasive Developmental Disorder - PDD
Pervasive Developmental Disorder Not 0therwise Specified - PDD-NOS
Sensory Integration/Sensory Processing Disorder - SID or SPD
These conditions may be mild, moderate or severe, and some individuals with WAGR syndrome may have a combination of two or more of these conditions.
For more information on diagnosis and treatment of these conditions:
Anxiety Disorder:
Anxiety disorders in children and adolescents:
http://www.nami.org/Content/ContentGroups/Helpline1/Anxiety_Disorders_in_Children_and_Adolescents.htm
The Children's Center for OCD and Anxiety
WorryWiseKids.org
online newsletter & resources
email: contacts@worrywisekids.org
web: http://www.worrywisekids.org/
Attention Deficit Disorder:
Children with Attention Deficit Disorder: http://www.chadd.org/AM/Template.cfm?Section=Understanding
Autism/Autism Spectrum Disorder/Pervasive Developmental Disorder:
The National Institute of Neurologic Disorders and Stroke:
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
Autism Support Network
Box 1525
Fairfield, CT 06824 (USA)
Tel: (203) 404-4929
Fax: (203) 404-4969
info@AutismSupportNetwork.com
http://www.autismsupportnetwork.com
Auditory Processing Disorder:
The National Institute on Deafness and Other Communication Disorders:
http://www.nidcd.nih.gov/health/voice/auditory.asp
Depression:
The National Institute of Mental Health:
http://www.nimh.nih.gov/health/publications/depression/complete-index.shtml
Obsessive Compulsive Disorder:
The National Institute of Mental Health:
http://www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/index.shtml
Obsessive-Compulsive Foundation
PO Box 961029
Boston, MA 02196
Tel: (617) 973-5801
http://www.ocfoundation.org/ocd-in-children.html
Sensory Integration/Sensory Processing Disorder:
WebMD:
http://www.webmd.com/mental-health/features/help-for-sensory-integration-disorder-in-kids
Sensory Processing Disorder Foundation
5655 S. Yosemite St., Suite 305
Greenwood Village, CO 80111
(303) 794-1182
http://www.spdfoundation.net
References:
WAGR Syndrome: A Clinical Review of 54 Cases. Fischbach BV, Trout KL, Lewis J, Luis CA, Sika M.
Pediatrics 2005; 116: 984-988.
WAGR syndrome. Clericuzio C. Management of Genetic Syndromes, Cassidy SB, Allanson JE, Eds.
John Wiley & Sons; 2005: 645-653.
Auditory interhemispheric transfer deficits, hearing difficulties, and brain magnetic resonance imaging abnormalities in children with congenital aniridia due to PAX6 mutations.
Bamiou DE, Free SL, Sisodiya SM, Chong WK, Musiek F, Williamson KA, van Heyningen V, Moore AT, Gadian D, Luxon LM. Arch Pediatr Adolesc Med. 2007 May;161(5):463-9.
Pax6 3' deletion results in aniridia, autism and mental retardation. Davis LK, Meyer KJ, Rudd DS, Librant AL, Epping EA, Sheffield VC, Wassink TH. Hum Genet. 2008 May;123(4):371-8.
Last Reviewed: April, 2009
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