Fwd: Gray Center SUN News: To Diagnose...or Not to Diagnose?

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Welcome to SUN News--a weekly update for The Gray Center Social Understanding

Network!

Staff members at The Gray Center spend a majority of our time answering

questions (by phone and email) 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, we are 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, we 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? Several weeks ago we

had a mom in our 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 (as I shared a couple of weeks ago), 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 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 on our SUN News blog at

http://graycenter.wordpress.com. 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!

Laurel Hoekman, Executive Director

The Gray Center for Social Learning and Understanding

www.thegraycenter.org

P.S. No one is required to have a formal diagnosis in order to access the

programs at The Gray Center! Watch our web site for information about new groups

forming for the fall, our autism film series, which begins at our Lakeshore

Office this THURSDAY (with a showing of " Normal People Scare Me, " ), and a wide

selection of books and DVDs which can help parents and professionals (and

individuals on the spectrum) gain a better understanding of the strengths and

challenges of ASD, as well as strategies to help! Find out more at

www.thegraycenter.org.

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