Individuals with Autism: The Real Experts

As a student I was told I was being groomed to become an expert in my field. As a professional, I am asked as to what is my expertise. I started off my college career seeking to become an expert in a field. I bounced around from one professional interest to another. I became discouraged with my ability–both perceived and in credentials–to become a real expert in any field or sub-discipline. It wasn’t until my last semester in Masters program that my view on becoming an expert changed.

Expert VS. Specialist

business-world-4-1165031An expert is defined as “a person who has a comprehensive and authoritative knowledge of or skill in a particular area.” On the other hand, a specialist is “a person who concentrates primarily on a particular subject or activity; a person highly skilled in a specific and restricted field.” The two definitions are similar; so similar, in fact, that many people use the terms interchangeably. I have used the terms interchangeably. However, as I have examined the definitions and worked in the disability discipline, I have begun to see things differently. I now choose to view myself as the latter.

I do not have a disability; therefore, I will never consider myself to be the “authoritative” voice on any disability or disability service. I also cannot say I have a “comprehensive knowledge” of disabilities since research constantly shapes the understanding of disabilities–both in diagnostics and in expected outcomes. I am, however, highly skilled in areas that pertain to disability awareness and services, and strive to help individuals with disabilities, families and communities understand disabilities and succeed in life.

The Real Experts

man-1157776The real experts on any disability are those living with it. Individuals with autism and their immediate family members have the 24/7 knowledge and experience with the disability. I include immediate family members as experts because individuals with autism are not always spot on when judging their skills and capabilities. No matter how much research is done, only individuals with autism will be able to tell you what it is like to live with the disability. Likewise, only a parent raising a child with autism will be able to accurately describe the challenges, triumphs and emotions that are experienced. This is not a new revelation; many professionals, including Dr. Temple Grandin, have advocated for individuals with autism and their families to be more involved in research and planning (e.g., IEPs, Transition plans, assistive technology plans). The question moving forward is whether or not we head in the direction of full inclusion of the real experts in research and decision making, or if professionals keep masquerading as “experts.”

Moving Forward

Specialists like me have an important part to play in disability advocacy and services. Many families need help with resources, services and creating a high quality of life for individuals with autism and other neurodevelopmental disabilities. However, professionals cannot continue to act as the “authority” on autism. Professionals need to recognize individuals with autism and their families as the true experts, and use their professional skill sets to work with the true experts in creating and maintaining high standards and quality of life for those living with disabilities. When we correctly identify our roles as part of the team, then the team can run efficiently; then we can see greater success.

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