Autism Society records most keynote and concurrent sessions at their annual conferences. You can see and hear those recordings by purchasing full online access, or individual recordings.
I am now in private practice overseeing two programs that provide direct systems navigation support to adults with Asperger Syndrome. Within this practice I have learned now insufficient this training is to the “real time” support of adults with AS. Most of my training focused on mental illness which, is in fact often a co-occurring component with an ASD however the mental health model is inappropriate in relating and supporting adults with AS as it is not representative of the core developmental disability issues.
Other than clients who have endured co-occurring trauma, most of the individuals with whom I have worked in practice and have met in community are quite capable however, without proper, disability specific supports and partnership to access services, they are just as disabled as their more obviously impacted autistic peers.
Further, their communication difficulties leave them unable to access services.
They face discrimination and abuse from others in the disability community who believe they can use intellect to bypass their differences. That is illogical and ineffective.
Thus, case management must look different for this population. Crisis looks different. And succeeding looks different. The following steps are necessary and essential to achieve personal wellness with AS.
Step One: Assessment. Individuals require a comprehensive and quality evaluation that will not only diagnose but express how autism impacts the individual in whatever environment they are attempting to navigate. Sadly, financial limitations prohibit most from obtaining this foundational information. Social workers can help find “back doors” to diagnosis. They can also help the individual articulate the reason for diagnosis.
Step Two: Integration. This step is one that is ongoing in nature but the diagnosis that appears on paper must become part of the individual’s conscious existence. They must use the diagnostic expressions to learn how they live with AS. This requires ongoing feedback without criticism.
Step Three: Engagement. The individual must learn to be among his/her peers with AS. This community can be quite empowering and supportive. However facilitating such a group is not without challenges.
Step Four: Engagement beyond the autism community. With group support and individual coaching, the individual learns to consider how the rest of the world operates. This includes disclosure to friends, family, employer and others. Scripting, coaching and role-play is the key.
It’s important to note that these steps may not happen in sequence. The sequence could be disrupted by a poor interaction with someone or the seduction of what appears to be a fresh start- a new identity. But there is no escaping it and living in authenticity is the key to emotional wellness.
Other external needs:
Individuals with AS need community.
Individuals with AS need excellent mental health support.
Individuals with AS require case management that is uniquely designed to address their needs and incorporates a systems navigation (hand over hand direct support) to access it
Individuals with AS need quality medication consideration and management.
Individuals with AS may require mental health support to overcome trauma and abuse (sometimes intentional/ sometimes due to a lack of understanding)
Individuals with AS must be offered the opportunity to define “success” for themselves. Being on disability but volunteering in a meaningful way may be a great “success” for one individual. Obtaining a Doctorate may be “success” for another. Leaving room for diversity and individuality is key to helping them to achieve.
As social work professionals, we MUST provide systems advocacy support to our peers who are in such dire need of this information and for expansion of adult services for individuals who experience extreme cognitive impairment without intellectual impairment.
Content Area: Education
Dena Gassner, Ph.D., student
Director Center for Understanding