MANAGEMENT of INTERSEXUALITY:
Guidelines for dealing with individuals
with ambiguous genitalia

by Milton Diamond, Ph.D. and H. Keith Sigmundson, M.D.

REFERENCES

We have purposely kept our references limited to facilitate use of these guidelines and reduce

complexity.

1. Diamond M, Sigmundson HK: Sex Reassignment at Birth: A Long Term Review and Clinical Implications. Archives of Pediatrics and Adolescent Medicine 1997; 151(March): 298-304.

2. Leo J: Boy, girl, boy again. U.S. News World Report, 1997; 17.

3. Gorman C: A boy without a penis. Time, vol. 1997, 1997; 83.

4. Angier N: Sexual identity not pliable after all, report says. New York Times 1997 14 March 1997; A1, A18.

5. Benjamin JT: Letter -to-editor. Archive of Pediatric and Adolescent Medicine 1997; 151.

6. Fausto-Sterling A: The Five Sexes: Why Male and Female Are Not Enough. The Sciences 1993; 1993(March/April): 20-25.

7. Diamond M, Binstock T, Kohl JV: From fertilization to adult sexual behavior. Hormones and Behavior 1996; 30(December): 333-353.

8. Quigley C, De Bellis A, Merschke KB, El-Awady MK, Wilson EM, French FS: Androgen Receptor Defects: Historical, Clinical and Molecular Perspectives. Endocrine Reviews 1995; 16(3): 271-321.

9. Imperato-McGinley J: 5-alpha-reductase deficiency. In: Bardin CW, ed. Current Therapy in Endocrinology and Metabolism, 5th ed. St. Louis, Mo.: C. V. Mosby, 1994; 351-354.

10. Donahoe PK, Crawford JD, Hendren WH: Mixed gonadal dysgenesis, pathogenesis, and management. Journal of Pediatric Surgery 1979; 14: 287-300.

11. McGillivray BC: Genetic aspects of ambiguous genitalia. Pediatric Clinics of North America 1992; 39(2): 307-317.

12. Wright NB, Smith C, Rickwood AM, Carty HM: Imaging children with ambiguous genitalia and intersex states. Clinical Radiology 1995; 50(12): 823-829.

13. Clemmensen LH: The "Real-life Test" for Surgical Candidates. In: Blanchard R, Steiner

BW, eds. Clinical Management of Gender Identity Disorders in Children and Adults, vol. 14.

Washington, D.C.: American Psychiatric Press, 1990; 121-135.

14. Meyer JK, Hoopes JE: The Gender Dysphoria Syndromes: A Position Statement on So-Called Transsexualism. Plastic and Reconstructive Surgery 1974; 54: 444-451.

15. Diamond M: Sexual Identity and Sexual Orientation in Children With Traumatized or Ambiguous Genitalia. Journal of Sex Research 1997; 34(2): 199-222.

INTERSEX SUPPORT GROUPS

For addresses or contact with groups outside the United States contact one of the groups below.

AIS (Androgen Insensitivity Syndrome) Support Group of the U.S.

A support group for those with AIS, also their family and partners.

4203 Genessee Ave. #103-436

San Diego, CA 92117-4950

Phone: (619) 569-5254

email: aissg@aol.com

Ambiguous Genitalia Support Network

A support group for parents and others.

428 East Elm St. #4D

Lodi, CA 95240

CAH Support Groups

For individuals or families with congenital adrenal hyperplasia

National Adrenal Diseases Foundation

505 Northern Boulevard

Great Neck, NY 11021

Phone: (516) 487-4992

web site: http://medhlp.netusa.net/www/nadf.htm

Congenital Adrenal Hyperplasia Support Association

1302 County Road 4

Wrenshall, MN 55797

Phone: (218) 384-3863

H.E.L.P. (Hermaphrodite Education and Listening Post)

A support group for parents and others affected by any sex differentiation disorder.

PO Box 26292

Jacksonville, FL 32226

web site: http://www.isna.org/faq.html#anchor643405

email: help@southeast.net

Intersex Society of North America

A peer support and advocacy group of and for intersexuals.

PO Box 31791

San Francisco CA 94131

email: info@isna.org

web site: http://www.isna.org

K. S. Associates (Klinefelter syndromes of all variety)

A support and education group for families and professionals dealing with Klinefelter syndrome.

P.O. Box 119

Roseville, CA 95661-0119

web site: http://www.genetic.org/

email: ks47xxy@ix.netcom.com

Turner's Syndrome Society of the U.S.

A support group for those with Turner's syndrome, their family and friends.

1313 Southeast 5th Street (Suite 327)

Minneapolis MN 55414

Phone: 1-(800) 365-9944

Fax: (612) 379-3619

web site: http://www.turner-syndrome-us.org

GENERAL SUPPORT GROUPS

National Organization for Rare Disorders (NORD)

Support and educational group for those concerned with any rare disorder:

P.O. Box 8923

New Fairfield, CT 06812-8923

Phone: (800) 999-NORD

Fax: (203) 746-6518

http://www.pcnet.com/~orphan/

Our-kids

Support group for parents of children with any sort of special need:

web site: http://wonder.mit.edu/our-kids.html

PFLAG (Parents and Friends of Lesbians and Gays)

A support group for parents and friends of lesbians and gays.

1012-14th Street NW, Suite 700

Washington, DC 20005

Phone: (202) 638-4200

email: PFLAGNTL@aol.com

SEXUALITY/GENDER/INTERSEX COUNSELORS

Appropriate counselors might be contacted at one of these national organizations.

American Academy of Clinical Sexologists (AACS)

P.O. Box 1166

Winter Park, Florida 32790-1166

Phone: (800) 533-3521

Fax: (407) 628-5293

American Association of Sex Educators, Counselors and Therapists (AASECT)

P.O. Box 238, Mount Vernon, Iowa 52314

Phone (319) 895-8407

Fax (319) 895-6203

Society for the Scientific Study of Sexuality (SSSS)

P.O. Box 208, Mount Vernon, Iowa 52314

Phone (319) 895-8407

Fax (319) 895-6203

Society for Sex Therapy and Research (SSTAR)

Secretary: Blanche Freund, Ph.D., R.N.

419 Poinciana Island Drive

N. Miami Beach FL 33160-4531

Phone: 305 243-3113

Fax 305 919-8383

top | article references

home ~ about me ~ intersexuality faq ~ intersexuality vocabulary ~ articles
real people ~ bulletin board ~