Q: I frequently find myself explaining to new acquaintances what Asperger’s Syndrome is. Sometimes the reaction I get is, “I know an adult who is just like that,” or “that could be my sister.” Recently a woman told me that her adult daughter (a twenty-something) has struggled to bond with people all her life, and has narrow fields of interest. She said she’d only heard of Asperger’s Syndrome recently, and learning about it “explained so many things.”
She was torn over whether to recommend her daughter be screened but felt that it was too late and that her daughter would accuse her of meddling. What are the advantages of diagnosing someone with a disability when they’ve made it into adulthood without a diagnosis? Should I encourage them to be screened or can the diagnosis harm them?
A: My aunt — my namesake — has two daughters, one of whom has experienced significant challenges her entire life. She has been diagnosed with AD/HD, and there is a family history of bipolar disorder. On one hand, Katie is a junior in college; she drives, has a boyfriend, and has her own online jewelry business. On the other, Katie has lived at home for the past semester because she forgot to turn in her housing application. She has had three accidents, two of which were less than a quarter mile from her house. Her boyfriend who does not attend college is her sole friend. She spends several days on one piece of jewelry, which she sells at a price that is not time- or cost-effective. My aunt has called my mom more times than I can count to talk about the struggles of parenting a 20-year-old who is going on 12. Several years ago, I sent my aunt a copy of Tony Attwood’s Complete Guide to Asperger Syndrome. The shoe fit. But it is still in the box, collecting dust. Katie has Asperger Syndrome, but she doesn’t know it. My aunt is worried about the effects of such a disclosure on her self-esteem.
I will be honest; it is very difficult for me to listen to my mother recount my aunt’s travails. I feel like everyone is holding the key and doing nothing with it. I’ve made recommendations for therapists in her home state; I’ve offered to fly out in order to help in any way possible. Yes, I admit that not being a parent makes it hard for me to understand the grieving that is involved in obtaining and revealing a diagnosis that changes the life of a child, a parent, and a family. I sometimes seem obtuse, even insensitive, because I want to “get to work” and I don’t always provide the space to grieve. I’ve learned that without grieving, there is never acceptance. I’ve also learned without a diagnosis, there is no personal understanding and personal growth. There is no hope for change and, certainly, no change. There is much self-loathing, feelings of incompetence, and unexplained failures, which can lead to depression and fuel further anxiety. We know that depression and anxiety significantly affect the quality of life of individual on the spectrum; we also know that these co-morbid conditions can be treated with significant success.
For four months last year, I held a different version of the same key; I spun my wheels when there was work to be done. I lived with my body knowing something with was different. I explained it as a bruise, a tender spot, a temporary problem. When I reconciled my fear and my priorities, I had an evaluation that resulted in the removal of a growth from my breast. I personally learned the answers to the questions posed by this Q&A.
If a diagnosis explains “so many things” then how could it not be beneficial? Because that diagnosis is unknown and scary. How could a diagnosis that explains “so many things” be harmful? Isn’t it a badge of success to have made it to adulthood without the diagnosis and the assistance that a diagnosis can beget? Perhaps. What impelled me to be evaluated was not my own inertia. It was my loved ones. They knew what I could not, and they held my hand as I anxiously embarked into the unknown. We can do the same for those whom we think my have a spectrum disorder. Perhaps the process is different, we can suggest they peruse the spectrum literature in private for themselves, recommend a therapist, or e-mail a helpful link, but the result is the same: self-understanding.