Three years ago, the CEO of Oglethorpe, Inc., John Picciano, LCSW, sat snoozing in the back of the room while listening to a presentation at a National Association of Social Workers (NASW) Conference called, “Autism, Asperger’s and the Culture of Neurodiversity.” Somewhere in the middle of that presentation, John’s eyes flew open as though a light bulb suddenly switched on in the back of his head. John shared, “I’ll bet there are a great number of patients admitted to our psychiatric facilities who are misdiagnosed and may be on the Spectrum.”
According to the CDC, the current Autism rates in children are 1:68 (Center for Disease Control, 2014). Autism rates with adults are a different story. There are no definitive numbers. A simple search on Google yields articles on the needs of adults, but estimations of the numbers based on new diagnosis are not easy to find. The adult population is in need of services and effective strength’s based programming. What is the best approach to best serve the newly diagnosed adult?
The Autism Project
The Autism Project (currently piloted through one of Oglethorpe’s psychiatric hospitals, Springbrook Hospital in Brooksville, FL) seeks to screen and evaluate patients admitted to psychiatric facilities for Autism in order to provide proper treatment and referrals upon discharge. The program, currently in its infancy, has gathered raw data through the use of the Autism Research Center’s AQ10 screening test (Allison, C Auyeung B, and Baron-Cohen S, 2012). Those who meet the criteria (scoring 6 or above on the AQ10) are then evaluated for Autism Spectrum Conditions (with informed consent) by a trained clinician utilizing the AAA Assessment (Baron-Cohen, S, Wheelwright, S, et al (2001) and (2004) Scott F., et al (2002)). During the month of January, numbers of patients warranting a more thorough evaluation (scoring 6 or above on the AQ10) were over 11%. These 11% carry labels such as Schizoaffective Disorder, Mood Disorders, Borderline Personality Disorder, ADHD, PTSD, and Substance-Related and Addictive Disorders.
Rough estimates prior to January averaged 7.3%. However, a more efficient source to gather raw data was discovered and procedures changed. Though it is still early, it is clear that more services are needed as the number of individuals admitted to Springbrook Hospital with comorbid and/or misdiagnosis is higher than the 1 in 68 (Center for Disease Control, 2014).
In the state of Florida, there is a wait list for services through the APD (Agency for Persons with Disabilities). “Waiver applicants who are in a crisis situation (homeless, danger to self or others, or caregiver unable to give care) should contact the Agency for Persons with Disabilities regional office serving their county” (http://apd.myflorida.com/customers/application). In order for adult individuals to obtain certain services, such as housing and day programming, it is necessary to be registered with APD. The APD lists excellent resources, however, if you are not registered and only waitlisted, there are services that are not available.
Individuals who have been diagnosed with Autism at Springbrook have often been referred to services such as the Division of Vocational Rehabilitation. Vocational Rehabilitation (VR) is a federal-state program that helps people who have physical or mental disabilities get or keep a job. VR is committed to helping people with disabilities find meaningful careers (http://www.rehabworks.org/).
What is Needed
Research is needed to determine the precise numbers of misdiagnosis and/or comorbid conditions. Those numbers could then be reported to federal and state governments in order to hopefully increase the number of available resources for individuals who are adults and newly diagnosed.
The creation of effective programming is needed. Someday the 1:68 numbers will grow up to be adults. A more proactive, creative approach across the board (throughout the United States) is needed to help individuals with Autism Spectrum Conditions lead productive lives with a good quality of life. The need is evident now, with those who are adults finding out they are on the Autism Spectrum. Support groups, social opportunities, psychoeducation, life skills support, and training on issues such as healthy sexuality are only a few areas where there is “opportunity for improvement.”
Trained, compassionate therapists are needed to understand and treat conditions within the context of Autism Spectrum Conditions. For example, a study quoted by the National Institutes of Health regarding children with Autism from ages 10-14 years old reports that, “Seventy percent of participants had at least one comorbid disorder and 41% had two or more. The most common diagnoses were social anxiety disorder (29.2%)…, attention-deficit/hyperactivity disorder (28.2%)…, and oppositional defiant disorder 28.1%…. Of those with attention-deficit/hyperactivity disorder, 84% received a second comorbid diagnosis” (Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., m Baird, G., 2008). One therapist called looking to make a referral because he informed the writer, “I am not qualified.” The writer asked, “Do you treat anxiety?” The answer was affirmative. “Do you treat individuals from diverse cultures?” The answer was affirmative. “Then how about treating anxiety within the context of an Autism Culture?”
Training mental health technicians, doctors and nurses, teachers and related educational professionals, police officers, crisis workers, grandparents, parents, aunts, uncles, etc. etc. etc. to recognize signs of distress without presuming someone is “just being difficult” or “just needs discipline” is also advisable. Speaking to sensory differences and awareness of the impact of sensory overload is necessary. A hospital or school environment is sometimes loud, may echo, and may be a reason for an individual with Autism to melt down due to sensory integration difficulties. Perhaps creating a more sensory friendly environment for everyone would be an easy remedy. Everyone would benefit from a gentler environment. Lower the lights, speak quietly, and “say what you mean; mean what you say.”
Those of us who have worked with children with Autism are now watching those same children grow into adulthood. As the needs of the adult population outweigh the available services, more research is needed that speaks to the possibility that there are undiagnosed adults who are isolating because it is easier than navigating through the social environment. Some of these adults are being admitted to psychiatric facilities such as Springbrook because of suicidal ideation or difficulties with emotional regulation (melt downs). More research is needed in identifying and assisting newly diagnosed adults who were without the services afforded children (such as social skills groups, occupational therapy, feeding therapy, etc.).
The main purpose of this article is to inform, but also it is a call to action for research, program development, and action on a larger scale with our colleagues with Autism charting the course.
Annette L. Becklund, MSW, LCSW, NBCCH, is an Autism Consultant with Oglethorpe Inc, She also has a private practice in Neptune, NJ, and Brooksville, Florida. For more information, please call (732) 292-2929, email AnnetteLBecklund@gmail.com or visit www.AnnetteLBecklund.com.
Agency for Persons with Disabilities. (n.d.). Retrieved March 6, 2016, from http://apd.myflorida.com/customers/application
Allison, C, Auyeung B, and Baron-Cohen S, (2012) Journal of the American Academy of Child and Adolescent Psychiatry 51 (2):202-12.
Baron-Cohen, S., Wheelwright, S., et al (2001) The Autism-Spectrum Quotient: a new instrument for screening AS and HFA in adults of normal intelligence. Journal of Autism and Developmental Disorders, 31, 5-17.
Caron-Cohen, S, & Wheelwright, S (2004) The Empathy Quotient (EQ). An investigation of adults with Asperger Syndrome or High Functioning Autism, and normal sex differences. Journal of Autism and Developmental Disorders, 34, 163-175
Center for Disease Control. (2014). Retrieved March 6, 2016, from http://www.cdc.gov/ncbddd/autism/data.html
Scott, F., Baron-Cohen, S., Bolton, P., Brayne, C. (2002) The CAST (Child Asperger Syndrome Test): Preliminary development of a UK screen for mainstream primary-school age children. Autism6(1), 9-31
Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., m Baird, G., (2008) Retrieved March 6, 2016, Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. As published on: US National Library of Medicine National Institutes of Health from http://www.ncbi.nlm.nih.gov/pubmed/18645422