For the last several weeks, we have been looking at the diagnosis of autism spectrum disorders (ASD),  the variety of ways in which people view their own diagnosis, whether to pursue the diagnosis when the characteristics are present, and how and when to disclose the diagnosis.

Now for another question…Is ASD a “disability?” Are those with ASD “handicapped?”

More than likely, people have perceptions of these terms that are extremely varied and potentially volatile. To adequately address this question, we need to first look at the abilities of people with ASD. I’ve heard the term, “differently-abled” to indicate those whose bodies or brains function differently than the majority. Certainly, those with ASD are in fact differently-abled. Their abilities often inspire awe and admiration in those who interact with them, from their often excellent memory for facts and statistics, to their ability to view life from a unique perspective, to their tendency to take people at face value, without judging them or forming prejudices.

But do their differences constitute a disability or handicap? Certainly, a practical and legal argument can be presented to enable many people with ASD to receive funding or services designated for those with disabilities. In this sense, ASD technically constitutes a disability, especially when an individual fits the dictionary definition of having a condition that “prevents normal achievement in a particular area.” Many people have benefitted from such services, and in fact, could not function successfully without them. Others function at a level where such services are not necessary (or are no longer needed). Perhaps they would even fit the description for “recovery,” which is an area of current research which I personally find very interesting.

But beyond examining the practical and legal application of the term “disability” to people with ASD, I believe it is also important to view this topic through the lens of social understanding. Years ago I had written an article, “Balancing the social teeter-totter,” where I noted that when the scales are tipped in favor of those who are “neuro-typical,” leaving those with ASD at a disadvantage, we all bear the responsibility for stepping in and balancing that social teeter totter. This is where understanding, strategies, accommodations, and genuine kindness come in. We can all make a positive difference in the lives of those around us, even to the point where individuals with ASD do not have to feel as though they are disabled or handicapped, but where their needs are met and their strengths are celebrated, and they are appreciated for who they are.

Here’s an additional thought to ponder: I once read an inspiring article about Scott Southworth, a US soldier who adopted a young boy with cerebral palsy from Iraq after his tour of duty there ended (Guideposts, July 2008). Although as a young single man, Southworth had been advised against taking on such a huge responsibility, he said he was relishing his role as a dad and an advocate. He summed up the question of differing abilities through his own definition of being “handicapped,” about which he says, “Being mean-spirited or hateful—those are the real handicaps. Love is what matters.” Southworth’s definition shows that there are many people in this world who do not have ASD, but are more “handicapped” than those who do. (I recommend that you read an update on Scott Southworth and all that he has accomplished--and the many benefits he has enjoyed-- through his act of kindness!)

Being helpful and kind can go a long way toward assisting others to live “ably.” It’s important work you’re doing as you promote personal and interpersonal growth all around the world—and many people are benefiting from it!

I have often thought that in a perfect world, a “diagnosis” would not be necessary for people with characteristics of autism, but instead, people’s needs would be met on an individual basis, and each person would be accepted and celebrated for who he or she is. We know that many factors contribute to our current inability to rely on a simple needs-drive-services model, and that the diagnosis is often both necessary and desirable for those who fit the criteria for an autism spectrum disorder (ASD).

Once our understanding of an individual leads to a diagnosis or points to the presence of ASD, often the on-going question becomes, “To Tell or not to Tell?” Who needs to know about the diagnosis? When does the individual himself or herself need to know?

The answer to this question is highly individual, and may change over time (perhaps again and again). Although there is no one answer that can work for everyone with regard to this issue, there are perhaps some guidelines that can be helpful. Some are related to my recent articles about getting a diagnosis, and person-first language:

1. Who needs to know? Primarily, it is important that people have this information if it will create a more supportive environment for the individual in question, and better empower him or her to reach their full potential. If needs are not being met and the individual is misunderstood without knowledge of the diagnosis, this would be an important time to increase understanding about ASD and how it affects him or her (and the social context, whether it is a classroom, playground, home, or workplace), as well as resources and strategies that could help.
2. Does the individual know about his or her own diagnosis? Often, a good time to provide this information to the individual is when he or she begins to question differences (why they go to therapy, why others don’t seem to want to play with them, why no one else knows the names of all the planets or the local train schedule, etc.) Be careful about setting up a situation where “everyone” knows about the diagnosis except the individual with the diagnosis!
3. How does the individual feel about the diagnosis? Some choose not to voluntarily disclose their diagnosis, while others are eager to share this information. Again, when needs are being met, it likely becomes more of a personal issue to be determined by the individual and his or her family.
4. Be sensitive to when and how the information is shared. If the individual is not aware of his or her diagnosis, or is not comfortable having it discussed in public, be sure to inform others only if necessary, and in a way that protects your own integrity and the thoughts and feelings of the person in question. It is important that the diagnosis not be used as an excuse. It is sometimes an explanation for why some things are difficult (or easy), or why a person needs to work harder (or less hard) in some areas than others, but it doesn’t excuse negative choices that they make. It should also not be used as the source of blame for all the negatives in a person’s life. In the cases where this has happened, I’ve seen people who view their diagnosis very negatively, seeing it as the source of all the things they don’t like about themselves or their lives. We can help to avoid a situation like this by watching our own attitudes that we portray toward the diagnosis and the individual with the diagnosis.

Again, this is a highly individual topic. Everyone likely has his or her own guidelines for disclosing a diagnosis to other people. If you’d like to share information that might be helpful to others, feel free to do so on our Facebook page!

Thank you all for your continued work in promoting personal and interpersonal growth—and autism awareness--around the world!

Throughout my career, I have spent a large amount of time answering questions (by phone, email, and coaching/consulting sessions) from people all around the world. These questions often center around a desire to gain information about their child (or the child in their classroom), the need for help with a particular situation (either creative ideas or resources they haven’t tried before, or a new place to take their child to access resources), suggestions for educating others about their child (or themselves), or ways to involve their child or young adult in more meaningful ways in their community.

Often, I am contacted by parents of children (of a variety of ages) who are just recently being evaluated for the possibility of an autism spectrum disorder (ASD). Sometimes they question whether they should pursue a formal diagnosis.

Naturally, this is only a valid question if the child (or young adult) meets the criteria for ASD. It would not be responsible to advocate giving an individual a diagnosis that does not correctly describe his or her developmental history, and current level of functioning (including strengths and challenges). At Social Incites, LLC, we do not do evaluations or provide diagnoses. However, I often walk parents through the following thought process, hoping that it helps them to make the decision that is right for their child:

1.     Is your child being met at his or her current functioning level? That is, are her strengths recognized, applauded, and utilized for motivation, positive peer interaction, and opportunities to offset her challenges? And are her challenges being addressed in a thoughtful, proactive way? I once had a mom in my office who is thrilled with the services her daughter is receiving from her school. The school has created a social skills group which meets regularly, a counselor is meeting frequently with the child and her teachers, the child has a supportive peer group in her classroom and on the playground, and is doing well academically in the classroom. This mom does not feel a need to pursue a formal diagnosis at this time for her daughter, even though she shows many signs of having ASD.

Addressing an individual’s current functioning level in an effective way is of huge importance, given the opportunity to possibly guide a person toward “recovery” from autism or at least, reaching his or her full potential, and/or increased access to social and academic success.

2.     The second thought concerns a “common starting point.” This is closely related to the first point (in fact, a common starting point often leads to a child being met at his or her current functioning level). Does everyone working with the child have the same (or similar) understanding of the child or young adult, and the assistance he needs to reach his full potential? If the adults in his environment consistently believe that he is deliberately acting out, without considering his sensory needs, communication and/or learning differences, and emotional or social struggles, then information about the presence of ASD might help his family, school community, or daycare environment address his needs more effectively. On a more personal level, I knew a young man who realized he had Asperger’s Syndrome after reading a newspaper article about the diagnosis. He commented to his parents, “This is me, isn’t it? And all these years I thought I was just stupid.” He had never been told that he was on the autism spectrum; this information may have saved him from years of self-doubt and a feeling of isolation. Once he knew his diagnosis, and was able to research it and meet other people with similar interests and abilities, he enjoyed a much more positive self-image!

Not only does a common starting point benefit the individual with ASD, but it can also benefit others working on this person’s behalf. Teachers (and other professionals), parents, and employers can attend conferences, read books, or consult with others who have experience working with individuals with similar strengths and challenges. I know one family who has been told that their child has “a brain disorder.” Although his profile seems very similar to those diagnosed with ASD, these parents have no one to connect with to share experiences, no books to read, and no other kids for their child to form friendships with who have the same diagnosis. Rather than having the benefit of using common knowledge about autism and what is most likely to be beneficial to this student, teachers instead approach the situation “from scratch,” looking to develop teaching strategies that might help a child with “a brain disorder.”

Can an individual’s needs be met without a formal diagnosis? Most certainly! Is this always the case? Unfortunately, it is not. The question of whether to pursue a diagnosis will need to be made on a case-by-case basis, and possibly be re-evaluated on a regular basis (as needs and abilities change, understanding of the individual increases, and adults rotate in and out of the person’s life). And certainly, there are people who have “recovered” from autism and no longer need to tell people about their diagnosis, as well as people who would prefer not to receive the diagnosis in the first place. (I’ll write more about that next week!)

Feel free to weigh in on this discussion on our Facebook page! Your experiences and opinions may prove helpful to individuals who are currently struggling to answer the question, “To diagnose or not to diagnose?” in their own life.

Special thanks to those of you who are making a formal diagnosis less of a necessity! Your flexibility, willingness to meet each individual at his or her current level of functioning, and desire to communicate with others in that child’s life, are greatly appreciated! Thanks, too, to those of you who are helping to make a diagnosis of autism a less negative experience for those who receive it. As I wrote last week, there are many people who are able to celebrate the presence of autism in their lives!

 

April is Autism Awareness Month. There are many activities centered around raising awareness and funds, both locally and far away. I hope, though, that those who watch or participate are able to see the scope of our efforts as being about more than a diagnosis, but instead, as being about people who are uniquely gifted and have so much to offer our society!

If you’re familiar with my Social Response Pyramid(TM), you know that according to this model, everyone has his or her own starting point when responding to input. This unique starting point is comprised of what the individual knows, feels, expects, believes, remembers, etc. The immediate individual context (MY CONTEXT) is a combination of interests, abilities, challenges, learning style, memories, past experiences, personality, birth order, ability to integrate sensory input, and medical, physical, or emotional differences or diagnoses, including an autism spectrum disorder.

Each pyramid represents a unique person. For example, a person may be tall, of average build, with dark hair, enjoy sports, have experience working with computers, be somewhat shy and quiet, a bit of a perfectionist, AND have autism.

At one time, I believed strongly in the need to identify such a person as a person with autism, NOT an “autistic person.” I feel sad when I hear parents or teachers say that they have “normal children” and “autistic children,” implying that one is better than another. Over the last many years, society has been working to emphasize that first and foremost, an individual is a child (or teenager, adult, or person), and secondarily, the individual has a condition that some view as a disability.

At one point, I became aware that not everyone agrees with the push toward person-first language as it relates to those diagnosed with ASD (autism spectrum disorder). In fact, there are many such people who argue strongly for the consistent use of the term “autistic” to describe themselves, as opposed to referring to them as people with autism. (This appears to be similar to the movement toward “Aspie” as a designation for individuals with Asperger Syndrome). Like me, they believe that autism is an intricate part of who they are; that it cannot be separated out as distinct from who they are as people. But they argue that the rest of us are simply trying to be politically correct in calling them “people with autism.”

I applaud the desire of these “autistics” to educate people as to their uniqueness and individuality, and their eagerness to embrace the characteristics which identify them as being on the spectrum.

The problem is, we live in a world where autism still isn’t generally accepted as unique and positive, and so using the term “autistic child” can be misconstrued and misapplied to other diagnoses by people who are NOT sensitive to the nuances of these terms. In other words, we should not endeavor to set an example for people who might again begin using terms such as “Down Syndrome child,” “diabetic child,” or even, viewed negatively, “autistic child,” losing the ground we’ve gained in promoting their personhood before examining the issues that they may face. We also cannot assume that everyone with ASD feels the same way, and would choose to be known as an “autistic person.”

It’s interesting to reflect on this issue. I’m aware that I’m resistant to the term “autistic” because I feel that it singles out those with ASD as being different from everyone else, rather than first acknowledging their similarities to other people. But the research I’ve done indicates that those who wish to be known as autistics WANT to be different from others; they do not want to be compared to other people, but instead wish to be known by their unique designation.

Over the years, my personal stance on this subject has been consistent with my desire to promote social understanding. I now acknowledge BOTH sides of the issue—and the rationale behind each side. From there, I think it should be up to an individual whether he or she prefers to be knows as an “autistic,” or as a “person with autism.” For those who prefer not to be connected officially—in any way—to the term autism, I’ll write more on that topic next week!

Thank you to all of you who are working to promote social understanding! I continue to learn from you, and am a better person because of it!

Can you imagine either of these scenarios?

-       Karen has announced that she is planning to run in a local 5K race. As the date approaches, she spends each day sitting on the couch, watching TV, playing video games, and snacking on popcorn. Although race day is looming, and she has never before run a 5K, she says she’s not worried—she can’t imagine not being successful at this endeavor!

-       Tom is 15 years old. He has just completed a driver’s education course where he sat in class for six sessions, watching videos and studying a booklet of “rules of the road.” When he emerges from the final class, his parents hand him the keys to the family car, and wish him well as he heads out on his own for his first drive. They’re confident he’ll be a safe driver!

I’m guessing you identified that neither Karen nor Tom is likely to be successful at reaching their goals.

Learning to be a safe driver takes a lot of practice in addition to knowing the rules, and competency needs to be proven before someone is able to drive alone. Becoming a safe driver cannot happen without experience on the road!

Similarly, no one can prepare to successfully run a race without consistent training.

I believe it is also true that social skills cannot be gained in isolation from other people and without on-going opportunities to practice. Almost weekly, I am introduced to young people who are supposedly looking for employment, but are spending their time alone at home. They do not have friendship groups, they are not taking classes, and they are not volunteering in the community. Like Karen, they spend their days watching TV and playing video games, yet they (and often their parents) expect that as they look for employment, they will somehow have the skills to succeed at interviewing, securing an offer, and getting along with supervisors and colleagues on the job. Like Tom, some people assume that social skills can be gained by reading books about “social rules,” or watching videos about social interactions. These are not bad strategies, but they cannot truly prepare a person for the experience of getting along with other people in real-life situations.

We all need both opportunities and skills for connecting with others in meaningful ways. Do you need to get more connected this week, or is there someone in your life who needs your encouragement, support, and practical assistance in this area?

Best wishes as you practice “social” as you go about your life this week!