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.

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 enable 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 people choose not to voluntarily disclose their diagnosis. I know other individuals who are eager to share this information with others. 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 people with the diagnosis need to work harder 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 my Social Incites™ blog or Facebook page.

Thank you all for your continued work in promoting social understanding around the world!

I spend a majority of my time answering questions (by phone and email, and through coaching and 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, if they’re a person with autism), 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 The Gray Center, 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 his/her strengths recognized, applauded, and utilized for motivation, positive peer interaction, and opportunities to offset his/her challenges? And are his/her challenges being addressed in a thoughtful, proactive way? One mom who has visited our office 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/she needs to reach their full potential? If the adults in the environment consistently believe that a person is deliberately acting out, without considering his/her sensory needs, communication and/or learning differences, and emotional or social struggles, then information about the presence of ASD might help this individual’s family, school community, or daycare environment address his/her 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 in a place such as The Gray Center. 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 here, or on my Social Incites™ 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. There are many people who are able to celebrate the presence of autism in their lives!

Last week’s Social Incites™ ended with, “Here’s hoping you and those around you can make the most of everything that comes your way this week…with lots of happiness along the way!” Today I thought I’d share an experience which brought lots of happiness my way last week!

My ten-year-old daughter invited me to a “Saturday Sleepover.” After I gladly accepted, she busily prepared for our special night by washing the sheets (soliciting a little help from Dad in learning to measure the detergent and use the washer and dryer), getting her reluctant brothers to help her re-make the top and bottom bunks, choosing a movie (and getting it ready to play in the family room), putting my pillow on the bottom bunk, and arranging some teddy bears on my pillow. She even made hand-lettered signs that read, “Mom’s Bunk” and “Jenae’s bunk.”

After watching “Facing the Giants,” (I cried through the movie; she said, “Mom, kids don’t get all emotional about things like that”) we ate cookies, brushed our teeth, tucked ourselves into our bunks, and talked way past her usual bedtime. It was truly a precious night. We talked about things that never would have come up if we hadn’t been spending that time together. We grew closer, and we made memories to last a lifetime. Together we created a tradition that we look forward to repeating numerous times!

Here’s my Social Incite™ for the week:

Whether you think you don’t have time for experiences like these, or your child is too old, or too young, or too disabled, or whatever excuse you might have, I highly encourage you to take time this week to do something meaningful for and with someone special in your life. I believe you’ll be glad you did!

When I conduct coaching sessions or consults with families, I frequently hear parents identify that their primary goal for their child is that they “be happy.” When I interview teens and adults for my “Social Coaching for Workplace Success” program, they, too, often respond that what they want most in life is to “be happy.”

Happiness is a wonderful thing. Most likely we would all say that we like to be happy (it’s certainly preferable to being miserable)! Happiness is a gift that should be treasured.

The problem with happiness, however, is in our understanding of it. Happiness is a great feeling, but where does it come from?

If we believe we can create others’ happiness, we will structure the environment and experiences to help them avoid disappointment, difficulty, frustration, and sadness. And when these negative experiences come—as they always will at some point—our loved ones feel as though we’ve let them down. Some go to the extreme of “shutting down,” or even believing that life isn’t worth living.

When happiness is the primary goal for our own life, we risk overlooking the needs of others and our potential ability to meet those needs. We rob ourselves of the joy that comes from persevering through difficulty and frustration, to experience satisfaction and contentment from a job well-done.

The reality is that the things, people, and situations that contribute to our happiness come and go, and even our ability to feel happiness in their presence may be inconsistent. And negative situations abound, threatening to destroy any tenuous happiness that may reside within us.

I believe a better goal for ourselves and our loved ones is to “learn how to be happy.” If we learn (and teach others) that happiness is more closely linked to our own choices than it is to the things others do and say, we can work on developing strategies which govern our positive choices, such as:

-       Managing stress (and our emotions) effectively

-       Thinking positively

-       Identifying our needs, and finding effective ways to get them met

-       Valuing the people in our lives who are the basis our “supportive relationships”

-       Reaching out to others by contributing our time, talents, and other gifts

-       Learning skills to build and maintain effective connections with other people

-       Learning from our experiences (both the positives and the negatives) so that we can continue to make better choices in the future

-       Recognizing the natural “ebb and flow” in life, and dedicating ourselves to continuing to move forward, using each new day to identify and respond to new opportunities

I found this “inciteful” quote online:

The happiest of people don’t necessarily have the best of everything; they just make the most of everything that comes their way.

Here’s hoping you and those around you can make the most of everything that comes your way this week…with lots of happiness along the way!