When the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is published in 2013, it will no longer list Asperger's syndrome as a diagnosis.
Asperger’s will be lumped together with the Autism Spectrum Disorder. If your child has Asperger's, what will this change mean for his care?
"These concerns are entirely understandable," says Alycia Halladay, Ph.D., Autism Speaks senior director, environmental and clinical sciences. "Under the most current criteria, the label of 'Asperger's' will no longer be used in the DSM-5. However, those who were previously diagnosed with Asperger's will now be diagnosed with Autism Spectrum Disorder (ASD). They should not 'lose' their recognition for need for services. The new DSM-5 criteria will include a category to provide more specific information on verbal ability and intellectual function which is intended to improve the type and scope of interventions that individuals with ASD receive. Therefore, those who currently have an Asperger's diagnosis and received services should not lose access to previously accessed interventions."
Even if your child continues to receive therapy or other special services she currently gets, when the Asperger's diagnosis disappears, what will she call herself?
Sarah Blake, LCSW, provides psychotherapy to patients on the spectrum, and is also mom to a son with Asperger's. She explains, "Individuals with Asperger's, and the people who love them, have given themselves a pet name, 'Aspies' and have worked hard to create for themselves a loving community online and in the real world — and the DSM work group thinks that none of this is important enough to keep their name alive. They have a community now, but in May, they no longer exist."
Whether you love or hate labels, for many people with Asperger's, having a name helps them be included and valued for who they are.
"I cannot even begin to express the relief on Austin's face when the therapist told him he had Asperger's," says Tracie M., a former special education teacher and 11-year-old Austin's mom. "His exact words? 'I always wondered why I was so different.' Having that label gave him something to hold on to, something to tell him that he wasn't 'weird' as the kids at school told him. It really helped him to know that his brain is wired in a unique way and that it was OK. That one little label gave us a way to help him."
"This change in the DSM is definitely going to be a journey in patience for all involved as we watch how it will ultimately play out," Tracie says. "My best advice for other parents would be to continue on as always, advocate for your child, and keep your mind open. Change is hard, but how we respond to that change is what will facilitate if we are successful or not in our endeavors."
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