Perkins School for the Blind Transition Center

Is the Label or the Person the Focus?

People who are diagnosed with Autism are often seen first for the diagnosis that they have. Many times programs are developed by organizations that have expertise with the labeled disability. People with autism are often accepted into programs based on this diagnosis. This is not unlike many other disabling conditions, hence the many programs that are available for elders, people with developmental disabilities, people with mental health diagnosis, people with autism, the list goes on. As the saying goes, “birds of a feather flock together.”

Although these programs are not wrong or do not mean to harm, it is just the nature of the program that may not meet the needs of each person involved. When you truly begin to know a person and see them for the unique individual that they are, you may find that the predetermined program may not be the best fit.

To bring this to point, while sitting at a meeting with many Commissioners of our state, a conversation began about the need for proper assessments. Of course, every department in each state feels that they are properly assessing its clientele and has the proper programs to meet their needs. But the real question is, are the assessments for a program, or are the assessments really weighing the needs of the person being assessed? When this question was brought up, it struck a nerve. The reaction was, if we really evaluated what each person needed, they may not fit into the “silos” we have developed.

This is exactly the reason why predetermined programs do not work for all people. Could this not be the cause of why many behavioral problems then begin to rise?

Listening to each person with autism has taught us a lot about how a system can best support each individual. As with each of us, every person with autism has different aspirations, skill sets, histories, communication needs, and goals that they wish to work on and move towards. It is with taking the time to try to understand this, that one can pick up on what is sometimes referred to as authentically important in that person’s life.

I will introduce you to two men who are each diagnosed with autism. Each of their names has been changed. Each person and their story is very different from the other. Their success is in the planning that occurred to get them what was needed, not just what was available. One of the men was previously in a situation that did not work and caused great angst. The other was asking to continue life with a normal lifestyle. The success is with each individual’s journey. The downfall would be if these men had been grouped together.

Steve Learns to Stand Up for Himself

Steve always lived a sheltered life with family who adored him and always took care of him. As Steve got a bit older and moved into being an adult, he began to struggle with standing up for what he felt was right, and at the time it was right for him. After a lot of planning, Steve moved into his own apartment with a combination of paid and unpaid support to equate a 24 hour service.

At first mom was extremely involved, helping to decorate or stopping in unexpectedly. But as Steve became more secure in his lifestyle, he began to hold a line. He would move things that mom brought in and put them where he wanted, saying it was his home. When she walked in unexpectedly, he learned to tell her to knock first and remove her shoes, as this was his home. If anyone tried to put his clothes away he would tell them No! This was important for him to do.

As Steve began to know more people at his housing complex, he began to get involved in community BBQ’s and would take his turn to host one. He would get help from his housemate and his staff to invite people to come over. If mom showed up he would make it clear that this was his party not hers.

Steve went through a tough and embarrassing experience at the State Fair over 20 years ago that left an obvious scar on him that drew negative attention and forced his family to leave. As he would drive by with staff he would say, “I want to go to the fair…I want to go…I can’t go…I can’t go…” Year after year he would say this and every year he would say, “Maybe next year.” After about five years, Steve asked if he and the staff could go together. The staff told him yes and that they could leave whenever he wanted. The day arrived and without anxiety Steve went to the fair and had a great time. After being there for about two hours Steve said, “I need to go.” They quietly left the fair and went back to this apartment. On the way home, Steve shared the following:

“Sometimes it takes me more time…sometimes I can’t just do something the whole day. I can get filled up like a pool of water – but when the pool is full, the water just runs to the ground. When I get filled up with too much stuff going on I get upset and cry. No one understands that just because I get upset and cry it doesn’t mean that I do not like what I am doing. Sometimes, it is just too much – too long. I still like to do things like everyone else. Sometimes everything is too much for me, the noise, the people – I become very anxious and get very upset.”

That day the staff realized: We need to take the time to listen. Sometimes someone with autism cannot tell us what is not working or why. But with listening, gentle support, a deep respect, trust and meaningful relationship, different approaches may bring out wonderful experiences.

Institutionalized with No Potential Seen

When we met Mike, he was institutionalized and had been for most of his life. He was seen as severely autistic, non-communicative, with limited intelligence, and had many behavioral problems. He was destined to leave the institution because of the institution being closed, not because people there saw a brighter future for him. Once out, he moved in with his family and then began to receive support in his new home. One of his supporters felt that Mike was trapped into a web of autism and began to help him to have a voice. His supporter helped him to identify communication boards and devices. This support staff was amazed at the interest and intelligence that Mike exhibited as they began to research what might work for him. Mike essentially made all the decisions, and worked to order the device. Once the device was obtained, a flood of information came from Mike. He was so misunderstood before. He was a man of great strength, intelligence and aspirations for a better life. He was a man who had not had a bit of education who then enrolled in a supported service to audit classes at the local university while he also worked to obtain his GED diploma.

“I want to say this is the happiest I have felt in a long time. Also, I can’t believe that I’m actually excited about the future. The actual thought of attending a university is now a living reality. A benchmark of some sort I am here today. I am very pleased at all of the progress we have made. Eats a person up inside when options are few and far between. I am looking forward to the day when abroad I can live. I mean not abroad but more independently. I think someday, all the world will see we disabled have much more in common than differences.

I want to complete my GED, see the world, and come to have a place of my own and my bachelor’s degree. I want a more active say in what I want and need. I am building for the future and I need consistency on all of your parts, if I am to be successful in school or whatever else I pursue.”

Both of these men, classified with autism, have much to say with the experiences that they have had in their life. They each speak to how misunderstood each of them and others have become. It is this misunderstanding that leads people with autism down a path of overload and behavioral problems. These men do not profess to speak for all with autism, they only speak for themselves from their perspective on what is meaningful to them. The success of their support will only come when the direct care professional is able to earn the deep respect of the person who is labeled and help them down a path of being a distinguished member of their community and not just a client of a system.

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