August 25, 2008 3:41 am Published by Francisco Monegro, Ph.D., M.D.
Last week we have the opportunity to attend to a sexuality training sponsored by Long Island DDSO and the
Center for Autism & Developmental Disabilities. In this training we reviewed why individuals with autism need sexuality training and support, how to provide support to them and how to address problematic sexual behaviors. Autism Spectrum Disorder and sexuality is a very challenging topic due to the complexity of the sexual development and understanding of sexuality of individuals with deficits in social skills, communication and sensory issues [e.g. high level of physiological arousal, hypersensitive to tactile stimuli, sex education, interpersonal relationships, same-sex attraction, bisexuality and transgender problems] (Lawson, 2005; Hutt, Hutt, Lee and Ounsted, 1964; Grandin & Scariano, 2002). In our society, this subject is generally not well received and is filled with taboos, which raises ethical, clinical and legal dilemmas for support professionals. Can we respond to consumers’ sexual questions or behaviors? Why do we need to provide sexuality training to all consumers, if some consumers probably will not understand any information that we provide about sexuality anyway? Most of the time we are underestimating our influences and power to facilitate healthy sexuality. As support professionals we should take advantage and use any “teachable moments” (TV shows, movies, songs, magazines) to share information or teach social skills. I think that we should develop a sexuality support plan that facilitates a healthy sexuality instead of simply eradicate the maladaptive sexual behaviors (Realmuto & Ruble, 1999).
Due to the cardinal symptoms of Autism Spectrum Disorder such as an inability to form social relationships, speech and communication impairment and an “obsessive insistence on the preservation of sameness” (Hutt, et al., 1964), autistic individuals may display problems in sexual behaviors such of inappropriate masturbation, inappropriate touching of self or others and poor menstrual hygiene. Keep in mind that autistic individuals are entitled to sexual fulfilment in the same way as anyone else, but the most important component to address the misbehavior is to determine the causes of the inappropriate sexual behavior. The maladaptive sexual behaviors can have multiple functions and triggers such as history of learned behaviors, partner selection, and medical reasons, physiological or sensory causes (distressing or confusing physical changes associated with puberty). According to Hingsburger and colleagues (1991), deviant sexual behaviors “may arise from living in a system in which appropriate sexual knowledge and relationships are not supported.” Dalldorf (1983) has suggested that persistent masturbation in some autistic individuals may be caused due to a lack of alternative outlets for sexual tension and a predisposition for self-stimulatory behavior. Moreover, some studies hypothesize that socially unacceptable sexual behaviors may be related to the core symptom domains of autism (Realmuto and Ruble, 1999.) Dr. Lorna Wing in her book Autistic children: a guide for parents and professionals(1985) reports that sexual development and interest varies with physical development in autism, but in general is delayed. According to DeMyer’s survey of parents (1979), she found that parents of boys with autism believe that their child is not interested in sexuality. However, while the initiation of menstruation and sexual drive are usually tolerated calmly, exhibitionism and masturbation are sometimes problems that manifest. Masturbatory activities is very frequent in autism probably due to the biological implication in Autism Spectrum Disorder [neurological and neurobiochemical](Wing, 1985).
Excessive masturbation in public areas and touching of self or others’ private parts are concerns for support professionals working with autistic individuals, especially when they are in the community. Sometimes these issues become a chronic situation or involve inappropriate targets such a family members or individuals who are lower functioning. In these cases the support professionals need to develop special treatment strategies such as incidental teaching, augmentative communication, teach about relationship boundaries or use antiandrogen therapy [flutamide (brand name Eulexin), bicalutamide (brand name Casodex), and leuprolide depot, etc. – medication used in the treatment of advanced prostate cancer, which decrease libido] (Realmuto & Ruble, 1999.)
We found the research on autism and sexuality somewhat limited, which makes it more difficult to provide the professional support that our autistic community needs in this area. The autistic community needs our support in accepting and understanding their sexual needs and rights, and in teaching autistic individuals appropriate sexual behaviors and how to execute their rights with responsibility.
August 5, 2008 4:59 am Published by Francisco Monegro, Ph.D., M.D.
I would like to analyze a few epidemiological patterns on autism diagnosis’s and treatment that may help to enlighten the increasing incidence of autism.
Epidemiological data collected from online surveys conducted by the Interactive Autism Network (IAN) show that in the state of
Connecticut, 41% of families with a member with autism reported that this member was diagnosed with autistic disorder, in comparison with 35% in the state of NY and 38% in the state of NJ. The tri-state area shows a lower percentage of autistic individuals diagnosed with autistic disorder when compared with the entire nation with 44%. However, the state of NY and NJ show higher percentage of individuals diagnosed with Pervasive Developmental Disorder, Not Otherwise specified (PDD, NOS), 42% and 33% respectably when compared with 29% in the nation,. The state of
Connecticut shows 14% of individuals diagnosed with Asperger’s syndrome in comparison with 10% in NY with and 9% in NJ. However, the state of
Connecticut shows a similar percentage as the nation with 15% of individuals diagnosed with Asperger’s Syndrome. This data indicates how autism spectrum diagnosis’s varies in the tri-state area from the national pattern. Although diagnosis data is reported by the parent and is not based on medical charts or on school reports, this data seems to suggest that in the tri-state area, PDD, NOS represents a difference to the national pattern.
Another interesting parameter is the type of treatment used. We have hundreds of autism treatments available. Many types of treatments have little or no clear scientific evidence to support their effectiveness. In the tri-state area the top treatment has been Speech and Language Therapy with 71% in NY, 70% in NJ and 67% in CT, which are all higher with respect to the national trend of 65%. Occupational therapy ranked in second place with 62% in NY and NJ and 60% in CT, higher than the national percentage of 52%. Moreover, state use of medications such as psychotropic drugs differs from the national pattern of 40%, when compared with 38% in NY, 32% in NJ and 33% in CT. The use of Applied Behavior Analysis (ABA) is greater in the tri-state area (NY 42%, NJ 54% and CT 43%) in comparison with the national pattern of 29%. The state of NJ ranked higher in the use of
ABA than NY and CT.
One way of interpret these diagnostic and treatment trends is to view them as a reflection of state changes in diagnostic practices, such as improved identification, availability of services, and other similar factors.
[Disclaimer: the data presented here is based on information submitted over the internet by parents of children with autism spectrum disorders (ASD) from the
United States who volunteered to participate in the Interactive Autism Network survey developed by Kennedy Krieger Institute and sponsored by Autism Speaks.]