The Person With Autism

The Whole Self Center sees a person with autism as a person first.

Over the years, I’ve looked for ways to explain what “seeing the person first” actually means. For me, the first layer of meaning speaks to the truth that because human beings are individuals, there is no one, sure-fire method to support a person, any person, to learn or change. Certainly with autism, the two famous statements are: “if you’ve met one person with autism, you’ve met one person with autism” and “if there were one strategy – behavioral, medical, psychological, educational… that worked for every individual, we would all be using it.” Consequently, The Whole Self Center’s point of view is to focus on what specifically works the individual in question. No one can be compared to another person 100% no matter how alike they appear. For example, we might question the validity of supporting an individual to use a certain type of communication system that he/she has clearly resisted for many years just because an agency uses that method. Additionally, it is likely children, adolescents, and adults with autism have been exposed to numerous theories, models, strategies, and interventions that are said to create change in – even cure – autism. But what if the theory being promoted that isn’t right for the individual? Another approach is to explore a strategy or combination of strategies that seem to be addressing the person’s individual needs.

There is another way of understanding the phrase “seeing the person first”. Are we seeing the person first and seeing autism second? Some would say that if we view autism as separate from the person, we are negating the fact that autism makes up the identity of the person. Families tell us otherwise. Families tell us that they know “there is a person” in the eyes of their child. In those moments, they see beyond autism and experience who their child “is”. The more we hear statements like this, the more we experience the children, teens, and adults for and as ourselves. With this perspective, The Whole Self Center’s understanding of autism continues to evolve. To explain this better, think of the number of times we as typical individuals (those of us without autism) say “use it or lose it” when talking about our typical brain. We know we need to stimulate the typical brain and keep it active in order for it to function efficiently. The point is that whether we are saying it outright or not, we see that there is a “me” who is stimulating “my” typical brain.

There is evidence that the autistic brain is distinctly different in appearance than the typical brain. There is evidence that people with autism learn best when we break down larger tasks into a series of smaller tasks so that over time the person can understand how the smaller tasks sequence together to accomplish the larger skill. Most service providers, teachers and care givers also know the importance of offering children with autism repetitive communication and functional tasks… again and again. Often you’ll hear them say that they are helping the person’s brain become re-wired as if there is an unspoken understanding that the autistic brain processes information differently than a typical brain. So if the autistic brain is “different” than a typical brain, it’s clear that we need to engage the autistic brain differently. However, The Whole Self Center would say that though we engage an autistic brain ‘differently, we do not treat the person with the autistic brain differently. Every human being is naturally entitled to the equal respect. Why would any one treat a person with an autistic brain differently than anyone else?

There are times when caregivers, parents, teachers, teacher’s assistants become noticeably angry at a person with an autistic brain. After weeks of directing the person to complete the same repetitive task, caregivers can become more than just frustrated if the individual hasn’t “mastered the task” or “reached the objective”. We’ve all experienced moments when we view the person with autism being resistant, oppositional, passive aggressive – or aggressive, regressed, low functioning, or deserving of losing a privilege. We might also take the person’s behavior as a personal affront to us; and therefore, our tendency might be to get back at the person. From The Whole Self Center’s point of view, these perspectives come as a result of a caregiver’s resistance to see past their perceived “duty” to fix what’s wrong with the mechanics of the brain of a person with autism. From this perspective, adjusting the mechanics of the brain is what is guiding their interactions with the individual. Why not look to the individual first and find ways to support that individual to use his/her autistic brain to the greatest ability possible? With this approach, it is natural for us to adjust our expectations of an individual as we engage him/her as the person begins to discover what is making sense and what is not.

There is a person beyond the mechanics of the brain – beyond an autistic brain – beyond a typical brain. Cultures define this “beyond” nature as consciousness or conscience or mind or soul. Rather than separate out a mechanical brain from a person, The Whole Self Center’s point of view is that a person AND his/her brain (whether typical or autistic) is a WHOLE SELF. There are definitely times when an individual needs repetitive mechanical tasks that we direct him/her to do outside, but from moment to moment we also need to honor the person using the mechanics of his/her brain. Honoring an individual doesn’t mean neglecting to set boundaries for the person or to identify a person’s responsibilities. On the contrary, we are honoring an individual’s ability to think, to make choices, to understand, to be creative, to struggle, to be challenged, to learn, to evolve, to express him/her self as a person… and to enjoy and engage in the stages of life the way that is right for him/her as a Whole Self.

We’ve likely all experienced moments when we witness an individual with autism show us a spontaneous, unexpected, and un-programmed response in his/her behavior or communication. The Whole Self Center’s point of view is that in those moments, it is that the person who is able to use his/her autistic brain in a way that goes beyond what we believed his/her brain could mechanically perform. In those moments the WHOLE SELF – the person and his/her autistic brain – reveals itself to us. The best way to understand this point of view is to remember that all human beings have moments when they behave in ways that feel easy, and natural. They are better able to think, learning feels easier, and they are able to function without stress and without as much effort. Psychologists call this experience being in the flow. Although the autistic brains and typical brain is different, the person using an autistic brain is no different than a person using a typical brain. Both are human beings.

If we only focus on the mechanics of the brain, we neglect to remember the person standing in front of us. The most important aspect of this WHOLE SELF perspective is that the more often we look in the direction of the person, the more likely the person can feel more relaxed, safe, and calm enough to use his/her autistic – or typical – brain more effectively. Moreover, as we focus person, he/she is better able to feel capable, rather than in need of fixing. By supporting the person to continue to realize his/her capabilities, we are also supporting the person to develop self confidence. In this process, the person not only learns new skills, he/she begins to understand that using the brain (autistic or typical).

Recently I had the privilege of meeting a volunteer coordinator at a library in Anne Arundel County Maryland. The Whole Self Center had been for 5 years providing Intensive Individual Support Services and Family Consulting to an adolescent who was now a 21 year old adult. We supported Michael to learn how to use an ipad to communicate, and because he shelves his “Thomas the Tank Engine” DVD’s perfectly, we asked him if he wanted to learn how to shelve library books. Then, for 4 months, we brought home stacks of library books practiced the science – and art – of alphabetizing books. Upon meeting Michael – who is nonverbal and seemingly detached from his surroundings - you probably wouldn’t suspect that Michael had many skills. The librarian, however, immediately gave Michael a chance. Not only did she speak to him in exactly the way anyone would be spoken to, she also assumed he was competent. She directed him to a cart with books and asked him to sort them. Michael completed the task. Though there weren’t any volunteer positions available at the time of the interview, the librarian said she was so impressed with Michael that she created a position for him. He’s now volunteering at the library one hour a week.

I told the librarian how much I appreciated her willingness to spend time with Michael, and I commented on the respectful way she interacted with him. And this is the point. She said, whenever I meet a person with any type of disability, no matter how they appear, I know there is a mind in there. Call it mind, call it soul, call it person… we call it The Whole Self.