A diagnosis of Asperger’s can be an overwhelming experience for parents and children. Some parents may feel an initial sense of relief at finally finding an answer to their child’s difficulties; at the same time, it also can foreshadow a long and trying road ahead full of therapies, academic difficulties, and social skill building. As clinicians who often evaluate and treat children with Asperger’s, one of the major questions parents frequently ask us is whether they should share the information about the diagnosis with their child. This is a complicated decision that deserves careful consideration.
Children who have been given an explanation and understanding of the label of Asperger’s may feel a sense of belonging after realizing that there are lots of children out there just like them. Rather than feeling stigmatized or defective, they may experience a sense of empowerment in having a community of like-minded children they may find at school, camp, or in various social skills groups or other treatment settings. It can offer inroads for forging connections with others who share similar challenges. Children may use their Asperger’s label as a potential cornerstone for building self-advocacy skills, and it can help facilitate a sense of control in their lives. For some, Asperger’s may be seen less as a disorder and more as a positive and fundamental part of their self-concept.
On the other hand, learning about their diagnosis can also feel oppressive. Children may feel a sense of shame or embarrassment. To some, the word Asperger’s can feel like a disease or a term describing what is “wrong with them.” We have seen children who were exposed to the word Asperger’s when they were diagnosed but avoid saying it at all costs, because of the sense of impairment it represents. In this regard, it can feel like an albatross. They may see Asperger’s as a challenge that holds them back from their potential. Disclosing the diagnosis can present other issues. For example, because children with Asperger’s often have difficulties with the subtle nuances of communication, it may be hard for them to learn when it is appropriate or inappropriate to share the information with others. Furthermore, there is misunderstanding about the diagnosis at a societal level and all too often it is framed in terms of its deficiencies rather than its differences.
We think this is an extremely important yet complicated issue, and one that needs to be dealt with carefully and sensitively to maximize the child’s adjustment to what lies ahead.
This article presents some ideas for consideration, as well as guidelines for parents struggling with this very issue to help them make the right decision for their child.
Psychiatric Versus Medical
For better or for worse, our society feels differently about psychiatric diagnoses and medical diagnoses. Interestingly, many parents feel less conflicted about the prospect of telling their child that they have a pervasive medical condition such as diabetes or asthma then a psychiatric one. So, why the difference? One of the big answers is stigma. Despite how far we’ve come in the field, psychiatric disorders of the mind are viewed and treated differently than those of the body. And even parents of special needs children, while likely more sensitive to the effects of the stigma, are not necessarily immune to them.
This issue is especially complicated when it comes to autism spectrum disorders. There are some in the field who don’t view Asperger’s or autism spectrum disorders as disorders at all but rather as unique ways of perceiving the world that should be embraced rather than cured. All of this makes it even harder for parents to gauge the meaning of the diagnosis and cautious about attributing a label that can be lifelong.
Parents Processing Their Own Experiences
Another important consideration is the parents’ reactions to the diagnosis. One thing to keep in mind is that our children are reflections of ourselves. More often than not, one or both parents identifies with what their child is going through because they experienced similar struggles themselves. There are times where a child’s diagnosis may also bring to light a parent’s undiagnosed condition that has been untreated or misunderstood for many years. Acknowledging their child’s disability may therefore trigger painful memories and powerful defenses for parents which, if left unattended or unresolved, can have a meaningful impact on how their child makes sense of their diagnosis. Therefore, if you are considering having this discussion with your child, we recommend first investing time into exploring your beliefs and biases about their diagnosis. Even if you hold these views close to your chest, your children may pick up on them implicitly. We are big advocates of parents scheduling meetings with a psychologist as a means of processing through their own feelings about their child’s diagnosis before sharing it with their child. These meetings can help parents clarify some of their own feelings and help them formulate a language and description that they are comfortable with in speaking with their child.
Thinking about the Child’s Age and Level of Functioning
Children are diagnosed at various different ages, across different times in their lives. They can be diagnosed as young as two or three or well into adolescence, so the discussion about when and how to talk to a child about the diagnosis will likely be impacted by the age of the child. In addition, the Asperger’s diagnosis can be given to a wide range of children with various challenges and levels of emotional maturity. Some children may be able to grasp the nature of the diagnosis at seven and eight, while for other children, it may seem too abstract, even at 16 years old. Both a child’s age and developmental level should be factors when thinking about disclosing the child’s diagnosis and considering ways to share this important information.
How to Talk with Your Child
The decision to share the diagnosis is a deeply personal and heavily nuanced one; a one-size-fits-all approach does not apply. Obviously, there are lots of things to consider. Our view is that in most cases, there is tremendous value in having an open discussion with your child about the nature of his or her difficulties and sharing with them their diagnostic label may be an important part of this conversation as well.
Whether this conversation is being prompted by a recent evaluation and diagnosis, or parents have chosen to disclose this information after keeping it quiet, odds are your child knows something is different about them. In general we have found that children construct all sorts of fantasies and ideas about what is wrong with them and having a candid discussion may actually dispel some of their worst fears. Below are a few suggestions to foster an open discussion with your child:
1) Highlighting strengths and weaknesses: We all have things we are good at and things we are not as good at. It’s pretty easy to come up with a list for each of us. It might be helpful for each of the family members, including parents, to speak about three things they are good at and three things that they struggle with. What is unique about the child with Asperger’s is the level of discrepancy that can exist between different areas. A 10-year-old with Asperger’s may have a reading level equivalent to a teenager in high school but math abilities of a five year old. What can be difficult for the child is the feeling of having such a large split inside of them. It can also be valuable to highlight the feeling of this dramatic chasm between the areas.
2) Using metaphors: Even though each child’s challenges are unique, there are certain characteristics that are fairly common in children diagnosed with Asperger’s. It might be helpful, again depending on the age and maturity of the child, to use metaphors to talk about some of these symptoms. For example, to explain executive functioning difficulties, we may talk about a huge pile of papers, with no folders to organize them. To explain cognitive inflexibility, we may talk about a child’s brain getting “stuck” and unable to move past something. For emotional dysregulation, we may talk about a child whose feelings feel way too big for his little body, and for social deficits, we may talk about going to visit a foreign country and feeling like we have a hard time understanding the language or culture. We have found the use of metaphors particularly valuable in highlighting what it can feel like for a child with Asperger’s dealing with these difficulties. These metaphors can also be used to explain to siblings, family members, friends or teachers when they don’t understand why these children are having a difficult time in some of these areas.
3) Role models: Many role models exist that speak openly and share their challenges. Having your child learn about different role models in pop-culture or sports with specific areas of difficulty who model perseverance, hard work, and embracing their challenges can be helpful. Thankfully, we have many role models in our culture that are open about their challenges, so it might be helpful to find a role model that connects with the child’s area of interest. For example, finding a baseball player with an area of difficulty for a child interested in baseball, or learning about an engineer with difficulties for a child who loves transportation, or an actor on a child’s beloved television show who has shared some challenges.
4) Respect their processing style: Children’s reactions to these talks reflect a full range of responses. Some children will have many questions and want to understand more. They may want to look up what different words mean and feel like they can’t stop talking or thinking about it. Other children will be resistant to talking more about it, and will want some space to process this information in their own quiet way. The biggest gift you can give to your child is to respect his or her own unique self and provide space and an opportunity to think and reflect about this information. You may want to enlist the help of mental health professionals to facilitate the healthy processing of some very complicated information. We very much believe that the understanding and synthesizing of this information is an important part of the developmental process and integral to your child’s forging of his or her unique identity. While it may take time, we believe treating your child with respect and support when sharing this information will help your child to integrate this information and empower him or her for success and self-actualization through hard work, insight, and understanding.
Over the years in diagnosing and working with children with Asperger’s and their families we have been humbled and challenged by this complex issue. As mentioned earlier, there is no singular approach because each child is unique and what will work for one child may not work for another. We hope that this article has stimulated some “food for thought” or ideas about how to empower our children by helping them get to know themselves better.
Shuli Sandler, PsyD, is a Psychologist with Spectrum Services in NYC. For more information, please email shulisandlerpsyd@gmail.com.
Michael Rosenthal, PhD, is a pediatric neuropsychologist with expertise in the evaluation and treatment of children and adolescents from pre-school through early adulthood. He is specialized in diagnostic, developmental, and neuropsychological evaluations of children with ADHD, executive dysfunction, learning disabilities, social cognitive weaknesses, and emotional/behavioral challenges. Dr. Rosenthal is also an expert in the identification and management of children when complex questions exist about autism spectrum disorders. For more information, please email michael.rosenthal@childmind.org.
