|
 |
|
|
|
|
|
|
|
|
|
This article is intended to assist mental health and related professionals who encounter people with Tourette Syndrome (TS) in their practice. It will provide an overview of Tourette Syndrome and the biopsychosocial issues faced by individuals with TS and their families. Implications for mental health practitioners will be presented.
It is important to keep in mind that the impact of TS on an individual with the disorder varies greatly and is influenced by many factors. Some of these variables include: the severity of the disorder; how others around them have reacted; the ego strength of the individual; when they were diagnosed; and the familial, peer, educational, and medical supports that have been available to them.
Tourette Syndrome is a neurological disorder characterized by tics-involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. There is a history of both multiple motor and one or more vocal tics, although not necessarily simultaneously. The tics occur many times a day nearly every day or intermittently throughout a span of more than one year. The tics change over time in number, frequency, type and location, and wax and wane in severity. The onset is before age 18.
There are medications available to treat TS for those individuals who find that their symptoms significantly interfere with their functioning. Some may choose medication if their tics cause physical discomfort, interfere with activities, or if they experience ridicule and rejection from others. They may seek guidance from medical or mental health professionals in deciding whether or not to take medication.
Many people with TS have additional problems such as: obsessions; compulsions and ritualistic behaviors; Attention Deficit Disorder with or without Hyperactivity; learning disabilities; difficulties with impulse control and sleep disorders. Mental health professionals treating an individual with TS should assess whether referrals are needed for an evaluation for diagnosis and treatment for any of the above conditions.
Sometimes individuals with TS have special educational needs which may necessitate an Individual Education Plan (IEP). If the public school cannot adequately meet the child's educational needs even with an IEP in place, then parents may need to pursue other approaches, consult with an advocate, or consider a special school. Mental health professionals can play an important role in helping the family obtain the most appropriate education for their child. In so doing they have an opportunity to educate school personnel and others about TS.
Individuals with TS and their families often seek help without a good understanding and acceptance of the disorder. Often they view the disorder as a psychological rather than a neurological condition. Because of this, guilt and blame has often developed over time, rather than understanding and compassion. This often is reinforced by schools, employers, other organizations, as well as individuals the person with TS and their families encounter.
It is therefore crucial for mental health professionals working with this population to educate the individual with TS, their family and often the organizations that play a significant part in their lives.
CHILDREN AND ADOLESCENTS WITH TOURETTE SYNDROME
The self esteem of the TS child/adolescent can be adversely affected when the child, family or peers take a negative view towards TS symptoms. They may blame themselves for having tics, and feel out of control because they can’t stop them. Those who can suppress tics at times, may feel confused as to why they can’t suppress them all of the time.
Part of individual and family counseling should entail educating the child/adolescent and family about the neurological nature of TS. This helps to decrease the child’s negative feelings about themselves and assists the family in supporting the child more effectively.
Due to limitations the child may have, parents often find themselves more involved with their child than other parents. In turn, their child may be more dependent on them due to the impact of the disorder. These dynamics can sometimes make separation difficult during adolescence and if not addressed, can create difficulties for the adolescents in becoming an independent adult. Practitioners can assist TS adolescents and their parents with this separation process.
Because TS is a genetic disorder, parents often feel guilty about having passed it on to their child. They may need help letting go of these feelings. Sometimes a parent realizes they have TS as a result of their child’s having been diagnosed with it. If a parent also has TS, they may need help understanding and dealing with their own disorder and separating their issues from their child's.
Mental health professionals may need to assist with other family dynamics. For example, family members may be annoyed at a loud vocal tic the TS child has. Is it reasonable or is it blaming the child to ask them to tic in another part of the home if others need quiet? Family sessions can be helpful in negotiating these kinds of issues.
Sometimes there are sibling issues that need to be addressed. For example, the sibling without TS may feel they get less attention than the affected sibling. They may feel overly responsible about not causing “problems” for their parents because they feel the affected sibling is draining them. Mental health professionals can help the family plan a course of action.
At school, staff may misinterpret the TS child’s/adolescent’s tics as negative behavior. The tics themselves may create obstacles in learning. Mental health professionals can assist the family in educating staff about the disorder and interventions they can make to help the child if needed, such as a designated place to tic privately if desired by the child; unlimited time for tests; an IEP (Individualized Educational Plan), etc.
Peers may be teasing and rejecting the TS child/adolescent.. They may need help developing strategies to deal with this. Sometimes helping them role play how to explain their TS to peers, empowers them to speak up. Once their peers understand the disorder, the teasing may stop.
Groups for children and adolescents with TS can help them to improve social skills, to have a supportive peer experience, and to feel less socially isolated. The group can help members to see that they are not alone in coping with TS and that others are struggling with similar issues.
Groups for parents can provide an opportunity to learn more about the disorder, how to manage TS and related issues affecting their child, share information, and meet others experiencing the same concerns. Parents also make connections, exchange ideas and resources, and “refuel”.
ADULTS WITH TOURETTE SYNDROME
Many adults today were not diagnosed with TS earlier in life due to a lack of awareness at the time about TS. It can be difficult for an adult to change the negative impact this may have had on them for so many years.
Relationships with family may be problematic if the diagnosis was not known earlier. This may have led to negative family dynamics compounded thru the years which can be difficult to undo without professional help.
Peer relationships may be poor, particularly if there is a history of having been chronically teased and rejected by peers. Support groups for TS adults can be very helpful in providing a positive peer experience.
Mental health professionals can play an important role in helping adults who have been significantly negatively impacted by their TS. They may be unsure about whether, or how to tell peers their diagnosis, worried they may risk rejection. Adults with TS may worry about job discrimination. They may be experiencing distraction on the job from tics, and are unsure whether to tell their employer about their TS. Referrals to vocational programs may be helpful for some TS adults..
For those TS adults who have difficulty becoming independent from their parents, mental health professionals can help them take steps toward living on their own, learning how to manage money, obtain vocational assistance, and develop mature peer relationships..
Couples therapy can assist with helping spouses understand TS and associated disorders as well as addressing marital conflicts that may have developed as a result.
There is a significant role mental health professionals can play in assisting individuals with TS and their families in coping with the impact of the disorder. It is hoped that this article has given the reader some encouragement to work with people and families affected by TS, and assistance in clarifying ways they can be helpful.
Emily Kelman-Bravo, LCSW, BCD
Emily Kelman-Bravo is the Director of TSA’s New York City Counseling Program, which is funded by the City of New York and provides counseling to individuals with TS and their families as well as offering support groups. For further information about the Counseling Program please click here.
©2007 Tourette Syndrome Association, Inc. 42-40 Bell Boulevard / Bayside NY 11361 / 718-224-2999