Autism Awareness: To Diagnose or not to Diagnose?

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!