When Adults Don’t Know They Have Asperger’s Syndrome

02 Nov

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.


Posted by on November 2, 2010 in ASD in the Grand Scheme


6 responses to “When Adults Don’t Know They Have Asperger’s Syndrome

  1. Petri

    November 2, 2010 at 1:53 PM

    As an adult with AS, I can only say: for deity’s/humanity’s sake — do tell! Anyone telling about their suspicions or thoughts, won’t be hurting anyone as long as they do it with some tact. In fact, not telling equals to deprive a person the opportunity to grow, it denies self-confidence as failures amount to huge messes with seemingly no other explanation other than personal failure. Would any parent, relative or friend want this for their loved ones?

    For me, it went something like this: When I was a kid, I was referred to a consultant psychiatrist, who conducted an interview, diagnosed me with AS and then promptly quit, without explaining what AS was, nor how it applied to me, leaving both me and the referring psych people alone trying to make any sense of this label I got. It was then rejected, as no one understood it (or its value as a tool to help me), and I continued my twisted and terror-fraught dance with the world, healthcare and my own best-guesses of what made me so miserable.

    Then, many years later, I met people who had AS. I met people who had read up on the subject. And most of all, I met myself, as the facts about AS began to sink in – providing me with a light of sorts to shine on the dark corners of my life. The moral of the story: tell the person, but don’t just leave them alone with it. True, some people do for various reasons reject the notion they might have an ASD, and sometimes for good reason, but most I think will be able to see themselves whether and how it applies and explains to them who they are, if given the opportunity to not only understand what was wrong, but also what they can actually do about it.

    (As a side note: I’m not a native English speaker, could you tell me what “Pookie” means? Or is it just a random name? Also, could you make them not show up with the images enabled in the RSS feed, I’d be happy personally. Not that they aren’t spot-on, evil or bad, but they do remind me of very much sadness, and I’d like to be able to choose when to take part of these “snapshots” for days I feel I can handle them well. The rest of the blog is just such a good read for me I just don’t want to miss the rest of it due to this issue 🙂 )

    • Petri

      November 2, 2010 at 4:21 PM

      (Ah, nevermind the last part in parentheses, I saw a link about it in the top of the page just now, which didn’t show in my RSS reader. Now I know why they are so spot-on… but still, if you could, perhaps they ought not be displayed directly in one’s RSS reader.)

  2. Tam

    November 5, 2010 at 6:04 AM

    Sorry I didn’t get around to commenting before now. As you pointed out, it was very interesting that we posted about the same basic subject on the same day. (I linked my post here if anyone wants to read).

    I, of course, agree wholeheartedly.

    I’m sorry to hear that you had to go through the incident you used as an explanation here, I hope all is well on that front now.

  3. Tam

    November 7, 2010 at 9:23 AM

    You know, I left a comment here the other day and it seems to have completely disappeared. I’m not sure what I said, now.

    I probably just mentioned that I do think it’s cool we blogged the same basic point (though from different angles) on the same day 😀

    I’m gonna link my post to my name on this one in case anyone wants to read it, crazy long, though.

    Petri you make a good point about not leaving people alone with the diagnosis. I’m sorry that happened to you.

  4. Mouse

    November 8, 2010 at 10:16 PM

    What are your thoughts on self-diagnosed adults? I’ve thought about getting an official diagnosis and I find that I tend to say things like, “I’m almost definitely an Aspie,” instead of saying it without qualification, but it’s very hard to find someone who diagnoses adults here, I’d be unlikely to disclose to HR, and I already have a lot of coping mechanisms in place.

    • S Williams

      September 16, 2013 at 4:21 AM

      I asked my psych and therapist about AS and was told, “If you are, you are extremely high functioning. Knowing wouldn’t make any difference, and it’s expensive. If it makes you feel better, you can ‘self-diagnose’.” …. I’ve been trying to figure out why I feel the way I do …. and really wanted a definitive yes or no ….. because I’m analytical that way. Should I take their silence as a “yes?” or a “go away, you’re not making sense again?” …. Did I forget to mention that I’m paranoid, severe OCD, depression, anxiety, ADHD, memory and focus impaired?


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