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Tuesday, January 20, 2015

It's Not a Secret: Why Disclosure is Important

From AANE.org
The Asperger/Autism Network

By Lynne Mitchell, MSW
December 23, 2014

In the general culture of the United States the hidden meaning of the word secret is shame, something bad that shouldn’t be discussed. When someone wants to keep “good” information private, it is more likely to be called a surprise.

Asperger's Syndrome is not, and never should be something shameful or embarrassing in and of itself. If someone behaves in an embarrassing way, it is totally different than labeling their whole way of experiencing the world as bad.

As the parents of children with Asperger's Syndrome, we must ensure that the message the children get is that they are not shameful or embarrassing for just being who they are.

Then, as adults with Asperger's Syndrome, they will be more likely to be able to embrace their traits of AS as simply a part of who they are and not as something to be kept “secret”.

There is a difference between not keeping something a secret and hiring the Goodyear blimp to make a huge, ongoing announcement to all who will listen. I am advocating that as the parents of children with AS we see ourselves as having a number of obligations:
  • to understand how our child experiences the world;
  • to share our understanding with our child;
  • to find ways to comfortably share information about our child with the other key people in our child’s life;
  • to help our child learn how to share information about him/herself as desired and as needed.

In many ways these obligations are no different than the obligations all parents have to their children who do not have AS. The main difference for many parents of children with AS is that they do not happen to have AS themselves, and so the experiences of their child with AS are more foreign to them.

As parents, we love our children. It is our job to work harder to “get it” about AS, and then share the understanding with him/her and with others. While s/he is a child parents choose who needs to have a greater understanding of what makes him/her tick. As s/he grows we hope that s/he is able to comfortably make those decisions because of what s/he has learned by watching his/her parents share their understanding and pride in him/her with others.

Disclosure is not one thing at all times and in all situations. In fact it is more likely that disclosure, as it relates to AS, will be different in each individual instance. The point of disclosure is almost always to give someone a more accurate and complete understanding of who the individual with AS is, what his/her strengths are and what s/he may need as modifications to compensate for areas of weakness.

This is also the rationale for the most important disclosure of all, the times the parents sit down and talk to the child himself. There will not be a time for “The Talk.” Rather, there will be a million instances as the child develops when the parents will have the opportunity to discuss what AS is and how it relates to the child. (There will probably be a first time, however.)

For many parents this is a very daunting task. They are frequently afraid of what the child’s reaction will be. They worry about having “all of the answers”. They worry about being too emotional or too unemotional or too exact or too general…

I have good news! This is not a one-time conversation. Each parent will have plenty of times to “get it right.” Disclosure is a process of growth and greater understanding of who we are as individuals. No one learns that kind of information in one conversation or from reading one book. It takes place over a lifetime for all of us, including those of us with AS.

There is no single answer to the question, “At what age do I tell my child he has Asperger's?” The most important criterion is that the parents are comfortable with saying the words Asperger's Syndrome. The parents should feel comfortable with their level of knowledge about AS. In addition, they need to be clear in their ideas of how AS is a positive aspect of who their child is, as well as an understanding of how AS is challenging for their particular child.

For most of our children, talking about specifics is more understandable; thus, “You know how you memorize all of the words to Disney movies without trying? Well, Asperger's Syndrome helps with that talent,” works better than, “children with AS have strong rote memorization skills.”

Similarly, “You know how it is really hard for you to learn to ride a bike? Well Asperger's Syndrome makes it harder for you to learn that skill than other kids, so I give you a lot of credit for not giving up (or I can see why you are so frustrated that you want to give up).” (As opposed to “Asperger Syndrome is usually associated with delays in fine and gross motor skill development.”)

Another common question parents ask is “Do I have to use the words, Asperger's Syndrome?” The answer is, you don’t have to do anything. However, I have found that most children feel a sense of relief knowing that there is a real term for their profile of strengths and weaknesses. That they belong to a group. That they are not alone. That there is a body of knowledge about how to compensate for areas of difficulty. That this is not laziness, or stubbornness, or a character flaw of some type.

We all, as humans, have a sense of relief in knowing that we are not alone. By not using the term Asperger's Syndrome you deny your child that sense of belonging to a bigger picture.

Finally, a common question is, “My child is an adolescent and we recently got the diagnosis. How can I tell a teen?” Well, there are no two ways about it, it is trickier to tell a teen anything, particularly something that has to do with their sense of identity. Although teens are more likely to initially deny or become actually upset with the label, over time all of the rationale for using the label with younger children applies to teens and adults as well.

Although teens often have a gut reaction that having AS means that something is “wrong”, there is also a sense of relief that the child is not imagining things. For years the teen had no way of understanding why the lights in class hurt his eyes so much, and yet no one else even noticed. If he did speak up he was seen as a complainer or a liar or a troublemaker. Thus the others around him did not validate his reality and he began to isolate himself from others, or became angry with others in anticipation of not being understood.

One way to tackle the issue of disclosure to the child with AS is to use children’s or young adult novels that have a central character with AS. (See list below.) The plot may involve three magical wishes or an alien landing in suburbia, but the experiences of the central character are colored by his/her AS and thus give the reader a gentle, matter of fact way to begin to explain what AS is and how it effects someone day to day.

As the child listens to you read the book, you can gently, matter-of-factly, point out similarities and differences between your child and the child with AS in the story. Your child may not agree, and may or may not extend the conversation. However, the conversation has begun. Something called AS exists. Other kids have the diagnosis. It is just a part of life. It is NOT a secret.

These novels, or one of the growing number of biographies of people with AS, are also a great way to introduce the concept of AS to siblings or classmates. The discussion of “the character has AS and so does our classmate” does not need to be heavy handed. Kids will see the similarities. A discussion mayor may not begin spontaneously. The point that you’re trying to make is that AS is a fact of life, a way of being, and a way of understanding some individuals better.

Another way to pursue disclosure for children with AS is to appeal to their tendency to enjoy non-fiction and fact based learning. Books that explain concepts such as social communication, theory of mind, and great rote memory may be helpful. Once the concepts are described in a general way, parents can help their child apply these ideas more specifically to themselves.

No two people are the same. This includes any two people who have AS. Characteristics will also change as the child matures and develops. When you first talk to your child the conversation may focus on awkward motor skills and an amazing amount of knowledge about Pokemón.

A few years later the conversation may focus on an incredible understanding of mathematical concepts and a difficulties in organizing homework, a bedroom and a desk at school. Later still, the conversation may focus on the feat of being on the honor roll in high school combined with incredible anxiety about poorly handled job interviews.

What is AS and how does it affect me? That is the question. The answers are amazingly positive and hopeful as well as unsettling and regrettable. The important message here is that it is essential that your child be told about all aspects of who s/he is so that s/he can ask her/himself this question. It is the only way for hi/her to truly understand who s/he is, accept her/himself and advocate for her/himself in the world.

Be brave. Be creative. Know your child. Be comfortable with your own knowledge of AS. Draw on your excitement about your child’s strengths, and the hope offered by a better understanding of your child’s differences.

The following suggested reading list is meant to be a guide to some of the books that can be used to introduce the concept of AS and begin the discussion of your child’s diagnosis.

Suggested Readings
  • Disclosure and Asperger’s Syndrome: Our Own Stories, edited by The Asperger’s Association of New England
  • The Curious Incident of the Dog in the Night-Time, by Mark Haddon
  • Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, by Stephen Shore, Phil Schwarz, et al.
  • Asperger’s and Self-Esteem: Insight and Hope Through Famous Role Models, by Norm Ledgin
  • Asperger Syndrome, Adolescence, and Identity: Looking Beyond the Label, by Harvey Molloy and Latika Vasil
  • Pretending to be Normal, by Liane Holliday Willey
  • Freaks, Geeks and Asperger Syndrome: A User’s Guide to Adolescence, by Luke Jackson
  • Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, by Stephen Shore
  • Asperger’s…What Does It Mean To Me? by Catherine Faherty
  • Asperger Syndrome, the Universe and Everything, by Kenneth Hall
  • Blue Bottle Mystery, et al. by Kathy Hoopmann
  • Buster and the Amazing Daisy: Adventures with Asperger Syndrome, by Nancy Ogaz

About Lynne Mitchell

Lynne Mitchell, MSW has been a clinical social worker for the last 16 years. She worked for 8 years for a therapeutic day school where she helped design IEPs and classroom programming to met the needs of various student populations, including students with AS.

More recently Lynne has been providing classes for parents and educators regarding how to best understand and meet the needs of children with AS. She is the parent of four, including a middle schooler with AS. This is the fourth year Lynne Mitchell has taught her very popular parenting classes at AANE.

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