MIXED EMOTIONS: Mother and Son Response to the DSM-5 Change

Thursday, February 2, 2012 View Comments walknowforautismspeaks

Editor’s note: In this blog, Wills and Monica share their feelings about the possibility that planned revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will cause him to “lose his diagnosis” of autism. As Autism Speaks Chief Science Officer Geri Dawson explained in a recent statement and webchat, preliminary reports may have overestimated the number of individuals who would lose or be denied a diagnosis under the proposed new definition of autism spectrum disorder (ASD). Autism Speaks is proactively working to determine how the new DSM will affect diagnoses and to ensure that no one affected by autism symptoms loses the services they need. Stayed tuned.   -- 

This is a guest blog post by author Monica Holloway, who wrote “Cowboy & Wills,” and her son Wills, a 14 year old on the spectrum. This post has 2 parts – first is Wills' reaction to the DSM-5 changing, and then Monica’s reaction to Wills.
 

Wills writes… (Monica’s note: Wills watches the evening news every night for current events, and we were watching together when this (the DSM-5) was announced as a possibility. As you can see, Wills has taken it as fact, even though we've talked to him about this. Wills is being mainstreamed in the Fall. This was in place long before Wills saw this newscast.) I have been on the autism spectrum now for fourteen years. Ending a fourteen-year journey through such hardship, fear and compulsiveness seemed to be unheard of. To see that goal finally come into view is truly unbelievable. Little by little, I inched my way off the spectrum, overcoming so much fear and anxiety. Now to possibly be considered “not autistic” simply over joys me. Nearly ten years ago, I was diagnosed with autism.

That marked the start of a ten year long marathon that might be coming to a close in the near future. When I saw Brian Williams say that “Aspergers might not be considered autism,” I jumped for joy along with everyone with Aspergers, I assume. That announcement meant the world to me, and I will remember it for the rest of my life. There are pros and cons involved in no longer being autistic. Like special needs schools. I am now too advanced for my special needs school. I will likely go to a different school in the fall. Another is, special needs services and counseling. But I think that these are helpful to anyone. For the hundreds of thousands of people with Aspergers, we finally did it!

Monica’s writes… As Wills’ mother, I find his take on the possibility of changing the DSM to not include Aspergers Syndrome (Wills’ diagnosis) incredibly heartfelt, as well as heartbreaking. Through endless conversations and therapy sessions, we felt that Wills was comfortable and accepting of his diagnosis. It's painful (and yet understandable) to  see that he has been hoping to come off the autistic spectrum. He is vocal and positive about his autism, often speaking to younger groups of children about his experiences. We saw him confident in who he was. Wills is fourteen years old.

If this had come up when he was first diagnosed (we had him in therapy when he was eighteen months old), he would not have received the services that have been instrumental in his improvement. As a young child, Wills was considered “high functioning,” but he still had many social, academic and personal issues that were debilitating. He was unable to stay in a classroom without a shadow, use a public restroom, interact with his peers, sit through any kind of school assembly, balance on a bicycle, hold a pencil or pen properly, sit in a restaurant —and the list goes on. My worry is that children like Wills will no longer be eligible for the services he received—the very services that gave him a chance at living his life as a relaxed person, fully integrated into society. I was surprised to see that Wills was so relieved to hear that he might not be “autistic” anymore, and that this was a great accomplishment to him. And in so many ways, it is an incredible accomplishment. He’s worked very hard, but I know other children and other families who have also worked just as hard without the same results.

Who can say why some children improve while others continue to struggle? And that’s not to say that Wills no longer has issues. There is plenty to work on. He continues in his social skills group, speech and language therapy, and sees an educational therapist to keep himself up to grade level. But these are not life-altering problems. His improvement is a miracle to me—a miracle that I want other families and children to experience. My son is my heart, and I want him to be proud of himself whomever he turns out to be. If he is (or is not) considered diagnostically “autistic,” it’s irrelevant in terms of the way I see him, but it is obviously not irrelevant to the way he sees himself. I'm proud of Wills for writing about his true feelings. His happiness and self-esteem are critical, of course, to his leading a happy life- which is all we want for our child. There is, as I said before, work to be done.

Have you had these conversations with your children and family? Tell us what you think by leaving a  comment and by sharing this post.