Raising Awareness Of OCD In Schools

By Fred Penzel, Ph.D.

A national survey conducted in 1984 indicated that OCD was the fourth most commonly diagnosed psychiatric disorder. Further, current estimates, indicate that about 1 in 200 children suffer from OCD, although this may actually represent an underestimate, as OCD may be underdiagnosed in children, for a variety of reasons. Given these numbers, and the disabling nature of OCD, it would seem sensible for schools to be aware of the disorder, the ways in which it can affect children, how to be able to detect it, and how to keep it from interfering in the education of student sufferers.

In the ideal world, all schools would be fully aware of the disorder and be able to effectively assist all their student sufferers. Unfortunately, this is far from the case. No one would question that schools want to be of the utmost help to all their students; they do. The problem is that despite the advances made over the last twenty years in raising awareness of OCD, there is still a great gap to be filled, and more can and should be done on both the national and local levels to accomplish these goals. If you are reading this section, it is possible that you may be among those parents with a school-aged child who happens to have OCD. When tackling the issue of raising the school’s awareness of OCD, revealing your child’s disorder to your school system will have to be considered. After all, how can you lobby on behalf of your child and other child OCD sufferers if you haven’t come out into the open about this? If you have already come to grips with this, and have informed the school, then this will not be a problem for you. If you haven’t, then there are a few points you should consider before you go any further.

I have encountered many families who were so worried about their child being stigmatized, that they did their best to keep the condition a secret from the school. The fear was that it would somehow appear on their child’s record, would make their child stand out in a negative way, would cause them to become isolated and picked on, and would hamper their child’s ability to get accepted to a college at some later date. In answer to these concerns, let me say that in nearly thirty years of treating children with OCD, I have never seen any of these things happen to any child whose school knew of their disorder. For one thing, even if it somehow did happen, it would be a clear case of illegal discrimination. For another, I have seen far more problems involving children who were struggling in school due to their disorder, unable to get extra help or resources that could have made a big difference, if only the school had been informed. Keeping secrets such as these can only increase the stigma of psychiatric illness. There was once a time when having depression was also treated as some kind of shameful secret. Nowadays, it is common to see commercials for antidepressant medication on the television. As a further indicator of how times have changed, I would just like to mention that one of my own teen patients, with the encouragement of her guidance counselor, recently wrote her college essay on how hard she has worked to overcome her OCD. On the whole, I believe that it is better to share this information with those people who are responsible for educating your child, rather than leaving them scratching their heads and feeling unable to help.

Having said all this, hopefully, you are a person who doesn’t sit around waiting for someone else to see that something needs to be done, and to make a move to do so. Perhaps you will try to make your own contribution to increasing awareness of OCD, and improve things for your own child, as well as others. Your child’s school and school district would be an excellent place to start. The question is where to actually start? The following are some possibilities for you to consider if you are considering what can be done.

• First of all, start by visiting the IOCDF (International OCD Foundation) website at ocfoundation.org to start gathering information. IOCDF is a nonprofit organization that provides resources about the disorder. It supports education, sponsors workshops and seminars around the country, offers a list of local affiliates around the country, provides resources for OCD support groups, and maintains a list of treatment providers around the country. As a member it can help by giving you further ongoing access to information and other advice and resources they have to offer. IOCDF is also working on an information package for schools, and in the near future you can also help to obtain this for your own district.
• Talking directly to your child’s teacher is another obvious place to start. Get the teacher to visit the IOCDF website, and particularly their OCD In Kids website at www.ocfoundation.org/ocdinkids. You can also pass along books and information on the disorder that they can read at their leisure. Another good website, sponsored by the IOCDF Chicago affiliate, is called the OCD Education Station. On a more personal level, you might have your child’s therapist talk with your child’s teacher, and in the process of discussing your child, have them educate the teacher about some OCD basics. If your child is in middle or high school, there will be a number of different teachers you can approach and share information with. The goal will be to get everyone on the same page.
• There are other important school staff members you might also speak to and share information with. This could include the school’s social worker, guidance counselors, and school psychologists. These are all personnel that a child with OCD might have dealings with, and who should be informed about OCD and its impact on students.
• Educating the children in your local schools about OCD is a really important goal. Start by inquiring if there is a mental health unit as part of the school district’s health ed program. When correctly done, these programs can really do a lot to spread accurate information and decrease the stigma surrounding mental illness. If there isn’t, try working through your local SEPTA (Special Education PTA) to lobby the district to include one. If there already is one, see if they include accurate information about OCD. I personally know of several children who identified their own disorders after learning about them in school.
• Find out if there is a local OCD expert or specialist in your area. Your child may already be seeing such a person. Next, see if your district would be interested in having this person present a lecture to interested faculty members on OCD in children. I have done such lecturing for local school districts, and quite a few teachers, counselors, and school psychologists have attended and asked many serious questions. You can even hand out literature from the IOCDF at such an event. Sometimes these lectures can be included as part of the required in-service training that districts offer to their teachers and staff.
• Pushing for an awareness raising day is also a worthwhile project. You might try to get your district to sponsor an OCD Awareness Day. An even better idea would be to have them do it simultaneously with the IOCDFs annual OCD Awareness Day. You could contact the foundation for some help with a project such as this.
• Another goal would be to obtain OCD books and materials for your school libraries. One mother, in Delaware, went even further and got a state NAMI (National Association for Mental Illness) grant to buy children’s books about OCD to be distributed to school and public libraries throughout the state.

So, as you can see, there is a lot that can be done. The above list is by no means exhaustive, and there are no doubt many other things you can do if you put your mind to it. The things you do will not only benefit your own child, but many others out there who suffer from OCD. Get going today!