Cure is not a four-letter word

Alison Singer Senior Vice President, Autism Speaks My daughter Lauren-a typically developing child- has a wonderful, dynamic friend named Haley who has been diagnosed with Asperger Syndrome. While Haley is the best reader in the second grade and can argue circles around the school principal, it is gutwrenching to watch her struggle in school every day. She cannot keep friends and is often all alone on the playground during recess. She is prone to violent outbursts and is generally unable to function in her classroom without one to one support. Sometimes the kids, and quite honestly her teacher, seem afraid of her. Her mother suffers every day along with Haley, as she wards off the pressure to administer medications that might calm the unruly, disruptive behaviors, but might also extinguish the brilliant light that has helped Haley excel academically. Haley has a personality and a mind all her own; if she were she my daughter I would be similarly loathe to squash it. Haley needs a lot of support and understanding, but she doesnt need to be cured. Laurens older sister, Jodie, shares the same DSM-IV diagnosis as Haley, but Jodie has classic autism, which falls on the other end of the autism spectrum from Asperger Syndrome. While I have often marveled at Haleys rhetorical skills and quick wit, Jodie struggles to simply string two words together with any communicative intent. Many days it is hard to believe that the challenges Haley faces with regard to her Asperger Syndrome and those Jodie struggles with are related under the same DSM-IV diagnosis. At one end of the autism spectrum we often find lower functioning persons like my daughter who cannot speak, have violent tantrums and can be self injurious, while at the other end we have persons who struggle with very significant, but very different, predominantly social issues. Too Wide a Spectrum? Im sure a lot of thought went into the decision to include Asperger Syndrome as one of the autism spectrum disorders. On a scholarly level I understand that Asperger Syndrome is an expression of the extreme social deficits that characterize all those on the spectrum. Also, I am certainly glad that persons with Asperger Syndrome are becoming able to access support and services if they feel they need them. But the differing abilities of persons with Asperger Syndrome are nothing like my daughters autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum. I have not met a person with Asperger Syndrome who seemed anything like my daughter. None of these persons, however, has ever met my daughter because it is so hard to take her out of the house. It is hard to consider her differently abled because she is not abled. She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure. Without her medication, she cries almost constantly during the day and cant sleep at night. She has frequent seizures. She cannot tell me when she is in pain, or where it hurts. She puts everything in her mouth unless it is food.

At age 9, her favorite game is still this little piggy. Thankfully, recently she has learned to use words to name items she wants and needs, and this has dramatically reduced her violent tantrums. She has benefited greatly from behavioral therapy and from risperdal and depakote but she has a long long way to go. She has a neurological disorder that responds to antipsychotic medication. Her pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life. Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back. Autism Speaks constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure. For this reason, much of our community struggles with the portrayal of basketball star Jason McElwain as the poster child for autism. My daughter cant carry on an impromptu conversation with the press the way Jason did. She cant make a basket. She cant throw the ball. She couldnt sit still to watch the Teen Choice Awards, and I daresay shell probably never receive one. Jason is a hero for all he has accomplished, but the kids who struggle to learn to count, use a fork and say I love you are equally heroic.

Asperger Spectrum Disorder? A good deal of the furor over the word cure may be the result of confusing autism with autism spectrum disorder. There are five diseases that fall under the autism spectrum disorder umbrella, one of which is autism. One of the five, Retts Syndrome, has its own advocacy community. The gene that triggers Retts has been identified and yet the Retts community does not protest when we say we do not yet know the genes that trigger autism, because they are aware we are speaking of autism and not all of the autism spectrum disorders. When Asperger Syndrome groups use the term Asperger it is clear what they are talking about. When autism organizations use the word autism it is often unclear whether we are talking about autism or the entire spectrum, including Asperger Syndrome. Most of the time, we are talking about autism. But for whatever reason, all five disorders are placed together under one diagnosis because the similarities between them are greater than the differences. Perhaps we could take a lesson from other disease advocacy organizations. There are many different diseases that fall under the umbrella cancer, but no one argues that the intervention for leukemia should be the same as for brain cancer. No one says that bone marrow research

is insulting because it doesnt serve the needs of persons with brain tumors. Hope is not a four-letter word At Autism Speaks, we are committed to bringing a voice to all who struggle with any type of autism spectrum disorder. Our goal is to do this by funding science that will find new treatments, and yes, ultimately, we hope, a cure for autism. In fact, in our last round of grants, we funded several projects focused on Asperger Syndrome and high functioning autism. We appreciate that persons with Asperger Syndrome have different needs than persons with lower functioning autism but we all need more options and new opportunities. Our hope is not to alienate but to unite in order to bring greater awareness of autism spectrum disorders to the public at large and thereby greatly increase public funding and private donations for treatment and research, increase access to services and reduce the stigma that is still associated with autism spectrum disorders. By shining a strong spotlight on autism spectrum disorders we can create a brighter future for all those who are affected.