Adult ASD: Self-diagnosis or Professional Diagnosis?

Part 5 in the I Think I Might Be Autistic Series

Whether you choose to seek a diagnosis or not is a personal decision. As an adult, there’s a good chance you don’t need a diagnosis. You’ve done your research, come to the conclusion that you’re on the spectrum and that’s good enough for you.

This is commonly known as self-diagnosis and when done correctly, it’s largely a well-respected approach in the ASD community. The primary reason? Getting an official diagnosis as an adult is difficult:

  • Asperger’s Syndrome and autism present differently in adults than in children. Finding someone trained and experienced in adult diagnosis can be challenging.
  • Many adults face numerous misdiagnoses before getting correctly diagnosed with Asperger’s or autism.
  • Women in particular are often misdiagnosed because they present differently than male aspies on whom the traditional model is based.
  • Diagnosis can be expensive and an adult evaluation isn’t covered by most health insurance.
  • Diagnosis can lead to bias, stigma and/or create practical limitations, like not being able to join the military or having your parental rights questioned.

So how does self-diagnosis work? First, be prepared to do some work. Self-diagnosis isn’t as simple as taking the AQ and deciding you’re an aspie. Screening questionnaires can be a good place to start, but they’re just that: a first step.

(click on the graphic for a larger version)
(click on the graphic for a larger version)

Here are some additional steps you can take to verify, challenge or test out your belief/suspicion that you’re on the spectrum:

  • Look at the DSM and/or ICD criteria for ASD (DSM-IV-TR criteria for Asperger’s and ASD, DSM-V criteria for ASD,ICD-10 criteria for Asperger’s and ASD).
  • Be sure you understand what each of the criteria means. ASD criteria manifest differently in adults than in children, so look for examples of adult traits when considering whether the diagnostic criteria applies to you. It may also be helpful to think back to your childhood and try to determine whether you met the early signs of autism.
  • Read books on the subject, both nonfiction (like The Complete Guide to Asperger’s Syndrome) and personal narratives (like Pretending to Be Normal or The Journal of Best Practices).
  • Read about the experiences of Autistic adults (scroll to the bottom of the linked post for a list of Autistic bloggers). If possible, talk with one or more Autistic adults. Comparing experiences with diagnosed adults can be validating. Also, there are many Autistic adults online (Tumblr, Twitter, Facebook, bloggers) who are happy to answer questions about specific aspects of autism and being autistic. Just keep in mind that Autistic adults are people too and we have a broad range of opinions as well as differing comfort levels when it comes to sharing our personal experiences.
  • Make a realistic assessment of your AS/autistic traits based on your reading.
  • Talk with one or more trusted persons in your life about your self-assessment. Do they see the same traits that you’re perceiving? Share a list of ASD traits (female ASD traits) with them. Do they see traits that you haven’t considered?
  • If you have access to childhood materials like report cards, school work, a baby book or old home movies/videos, review them in light of the childhood symptoms of AS/autism.
  • If possible (and if you feel comfortable) ask your parents about your childhood. If you don’t want to frame your questions in terms of autistic symptoms, you could simply ask things like “Did my teachers say I [did X or behaved like Y]?” or “Do you remember me doing [X, Y or Z] when I was a toddler?”

As you do your research, keep in mind that not everyone has every symptom. Symptoms can change in severity and presentation over a lifetime, becoming either more or less noticeable with age. In fact, it’s not unusual to find that as you age, one trait (like sensory sensitivities) becomes more manageable while another (like executive dysfunction) increases in severity.

By the time you’ve completed your research, you should have a good idea of whether Asperger’s syndrome or autism is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need (or have a specific reason) to seek out a professional diagnosis, which can be a long and difficult journey.

Even if you choose to pursue a professional diagnosis, you may want to work through the self-discovery process first. Often, getting diagnosed as an adult requires making a solid case for why you think an autism diagnosis fits you.

Weighing Self- vs. Professional Diagnosis

  • Obtaining a diagnosis as an adult can be very difficult.
  • Not everyone needs or wants a professional diagnosis.
  • Self-diagnosis is widely accepted in the autism community when done with diligence.
  • Self-discovery is a good first step toward professional diagnosis if you choose to pursue it.

Next in the series: Seeking a professional diagnosis

Alone

From childhood’s hour I have not been

As others were;

“Alone” ~ Edgar Allen Poe

I’ve spent a good portion of my life alone.

I don’t mean alone in the sense of being unattached; I’ve been married for more years than I’ve been single. By alone, I mean in a solitary state. I’m tempted to say not in the company of other people, but I can be alone in a crowded room as well as in an empty room.

If you’re not an aspie, this might make you feel sad for me.

Don’t. I enjoy being alone. I know this can be hard to understand. The Scientist often tells me that I should go out more, that it’s not good for me to be home alone all day. One of the enduring themes of my childhood was that I needed to make more friends. It showed up on report cards and in parent-teacher conferences. At one point my parents discouraged me from visiting my best friend, in the hopes that it would force me to make other friends.

Mostly it all made me angry. I didn’t see the point of interacting with a lot of people. Having a couple of friends left me plenty of time to do the things I liked to do alone: riding my bike up to the reservoir, walking in the woods, listening to music, reading, organizing my collections, shooting baskets, rollerskating, throwing a tennis ball against the wall, playing board games.  Continue reading Alone

Taking the Alexithymia Questionnaire

This week for Take-a-Test Tuesday we’re taking the online alexithymia questionnaire.

Alexithymia refers to people who have difficulty identifying and describing emotions as well as differentiating between physical and emotional sensations. It’s not a formal diagnosis, but a way of describing a common set of experiences related to emotional dysfunction.

Some descriptions of alexithymia also include impoverished imagination and a tendency toward externally oriented (concrete) thinking. I found it interesting that both studies I cite below omitted these last two characteristics. Many of you who commented on the emotional dysfunction post last week questioned the inclusion of impoverished imagination, saying that you personally felt the opposite was true. I have to agree with this. My imagination is, if anything, overactive. Perhaps there is an autistic subtype of alexithymia?

Alexithymia is extremely common in autistic individuals. About 50% of people diagnosed with ASD have severe alexithymia, however nearly all people on the spectrum experience it to some degree. Among the general population, about 10% fit the alexithymia profile and parents of autistic children are more likely to be alexithymic than parents of nonautistic children.

When it comes to social communication, the line between autistic traits and alexithymic traits is blurry. Two recent studies (Bird et al, 2010 and Silani et al, 2008) suggest that alexithymia, not ASD, is responsible for impaired affective empathy.

The 2008 study looked at brain activity in autistic and nonautistic people with and without alexithymia. It found a correlation between a person’s level of alexithymia, brain activity in one of the regions believed to be responsible for identifying one’s own emotions, and scores on an empathy questionnaire. This was true of both the autistic and nonautistic participants, suggesting that impaired processing of emotion, not autism, is the source of impaired affective empathy.

The brain uses the same neural pathways for perceiving and interpreting our own  emotions as well as the emotions of others, so it makes sense that if we cannot process our emotions easily, we’ll also struggle to process emotions demonstrated by others..

One question that remains unanswered is why autism and alexithymia occur together so frequently.

Many commenters on last week’s post recognized themselves in my description of my own emotional dysfunction, so I thought it would be interesting to take the Online Alexithymia Questionnaire. While not a clinically recognized measure of alexithymia, it is based on commonly used clinical screening questionnaires.

Pros and Cons of the Online Alexithymia Questionnaire

Pros

  • Self-scoring
  • Provides subscale scores with cutoffs
  • Overall score is presented on a simple visual “severity” scale
  • Includes questions phrased as self-observation (I feel . . .) and other observation (People tell me . . .)

Cons

  • Not clinically tested or validated
  • Unclear how cutoffs were derived
  • Includes questions on topics that are not a part of generally accepted alexithymia definition

Taking the Test

The alexithymia questionnaires used in clinical research (TAS-20, BVAQ) aren’t available online, so I took the Online Alexithymia Questionnaire (OAQ-G2).

Take the test here. There are 37 questions. You have to answer at least 20 to get a result, meaning you can skip any you find overly invasive. The answers for each question become “grayed out” once you make a selection but you can go back and change your answer if you want to.

Scoring the Test

When you’re satisfied with your answers, click the “Evaluate Test” button and you’ll be given an overall score as well as 7 subscale scores. Here are mine:

Test Results: 141 Points.
Alexithymia: You show high alexithymic traits.

The yellow area indicates "some alexithymic traits" and the orange area indicates "high alexithymic traits"
The yellow area indicates “some alexithymic traits” and the orange area indicates “high alexithymic traits”

Difficulty Identifying Feelings: 23 Points <15 – 18> high alexithymic traits

Difficulty Describing Feelings: 17 Points <10 – 12> high alexithymic traits

Vicarious Interpretation of Feelings: 13 Points <8 – 9> high alexithymic traits

Externally-Oriented Thinking: 29 Points <18 – 21> high alexithymic traits

Restricted Imaginative Processes: 19 Points <18 – 21> some alexithymic traits

Problematic Interpersonal Relationships: 29 Points <15 – 18> high alexithymic traits

Sexual Difficulties and Disinterest: 11 Points <10 – 12> some alexithymic traits

The subscale scores in parentheses appear to be equivalent to the yellow area on the slider bar, meaning “some alexithymic traits.” A score below the range in parentheses indicates the absence of alexithymic traits (green area) and a score above indicates high alexithymic traits (orange area).

Keep in mind that the last two subscales, problematic interpersonal relationships and sexual difficulties/disinterest, aren’t specifically part of the formal definition of alexithymia. It’s possible that the sexual difficulties subscale could be impacted by whether a person is in a long-term relationship and feels comfortable with their partner.  Also, externally-oriented thinking and restricted imaginative processes are not always included in clinical definitions of alexithymia. The first three subscales are the best gauge of the core deficits of alexithymia.

I was surprised by my score on externally oriented thinking. This item refers to a tendency to think in concrete, nonintrospective terms. I don’t view concrete and nonintrospective as synonymous, but that could be my autistic brain.

I think in concrete terms, but I also spend a lot of time examining my thoughts and feelings. I might spend more time on the latter because I have to consciously “check-in” with my feelings to identify them. However, neurotypical people may be spending more time considering their feelings as part of decision making or social interaction. My introspection usually tends toward “what the heck is going on?”

The Bottom Line

The Online Alexithymia Questionnaire is the only freely available alexithymia  test. Although not scientifically validated, it appears to be a reasonable “amatuer” measure of alexithymic traits and a useful starting point for better understanding how you process emotions.

Sunday Thoughts on Writing

As promised, here is the second of the blog awards I’ve been tagged for. MCS Gal at Cooking for the Chemically Sensitive tagged me for the Reality Blogging award. Her blog is a mix of practical kitchen/household tips and recipes for those who have chemical sensitivities, so if that’s you (or someone in your family) check it out.

The rules for this one are simple and I’ve pasted them at the bottom. I’m going to prompt twist and use my “7 things about me” to talk about one specific thing: writing.

1. Between my junior and senior years in high school I applied to a summer writing program at Yale. I submitted the required piece of short fiction and soon received an acceptance letter. . . to the nonfiction program. Because my fiction was so good that they thought I should be writing nonfiction? After reading the brief program description, I declined. There was no way I was going to go on “experiential” field trips every Saturday and then spend the week writing about them. That would have required talking to strangers. Seriously.

2. I have always written Autistic characters. I haven’t always known that I was doing it.

3. Early last year, I tried to talk my way into a creative nonfiction class. I was an econ major; the class was an upper division course for writing majors. It sounded interesting and fit my schedule so I asked the prof for an exemption from the many prereqs. I talked up my published short stories and my nonfiction editing experience. “Have you ever written any memoir?” she asked. And my first thought was, who would want to read about my life? I didn’t get into the class. Life is funny like that.

4. I have a phantom word problem. Sometimes I skip over a word when I’m typing–usually a short word like at or not–and when I proofread, my brain “sees” the missing word. It’s frustrating. I worry that people think I don’t proofread, when in fact I often read posts a half dozen times or more before publishing. I read in gdocs, on paper and in the post window. Sometimes reading in a different format or taking time away from a piece reveals the missing words, but not always.

5. When I can’t find just the right word, I worry that the right word doesn’t exist. I worry about this in the way that some women worry that their soulmate doesn’t exist.

6. Over the years I’ve been fortunate to have three writing buddies–Mary, Michelle and Kathryn–talented writers willing to look over my drafts and make suggestions. It’s rare thing to find someone who is closely matched in skill level and willing to slog through hundreds of thousands of words to let me know that I might want to put a comma here or explain myself better there. I can only hope they’ve gotten as much out our writing partnerships as I have.

7. One of my most cherished  possessions is my 1962 third edition of Roget’s International Thesaurus. The words are grouped by ideas rather than alphabetically, which is a beautiful thing. I stole it from a nun. Sister Laurette. I think she stole it from someone else because she inscribed her name over a different set of initials.

My Roget's Theasaurus, yellowed, stained and falling apart
My Roget’s Theasaurus, yellowed, stained and falling apart

realityThere are, of course, rules:

  • show appreciation of the blogger who nominated you and link back to them in your post;
  • add the award logo to your blog;
  • share 7 things about yourself;
  • nominate 5 – 10 or more bloggers you admire;
  • contact your chosen bloggers to let them know.

And now, in keeping with my theme, I’m going to tag some bloggers who I admire as writers. Don’t feel pressured to do anything with this, folks. I know one of you isn’t even blogging any more. This is my way of saying I like what you write and I also like how you write it.

  • Aspie Writer who is blogging her excellent memoir, Twirling Naked in the Street. I don’t comment on it nearly enough but I’m always excited to see a new installment pop up in my reader.
  • Adrienne at Eat Me, Drink Me, Bite Me, because it was her honest, gutsy blogging that planted a seed in my head.
  • Unstrange Mind who is fearless and whose courage makes me want to reach deeper.
  • Ariane, who writes at Emma’s Hopebook, where amidst the smart, thoughtful commentary you will find beautiful sentences like this: “Different sized flakes whirl about as though unaware that gravity will eventually win out.”
  • Lori at A Quiet Week in the House, who I am putting last because once you go look at her gorgeous artwork, you will forget to come back here.

I Think I Might Be Autistic (Part 4)

This is the 4th part in an ongoing series about being diagnosed as autistic at the age of 42.

Mourning the Loss

Eventually reality set in. I’m autistic. 

Not the happy “Yay! I’m different! I’m unique! I’m special!” autistic.

More like “Holy crap . . . I’m defective . . disabled . . . challenged . . . never going to get any better” autistic.

This was when the mourning began. Once the bright shiny new this-explains-everything stage wore off, I started thinking about the other side of being autistic. I wasn’t going to “outgrow” my social awkwardness. I wasn’t going to wake up one day and suddenly have a balanced emotional life. The challenges I faced weren’t imagined and they weren’t going to magically disappear. They were with me for life.

This is me. This is always going to be me. Forever.

Talk about hard realizations.

The questions that arose were mostly  variations of “how would my life have been different if I wasn’t autistic?” As I tried to envision taking away this or that autistic part of me, it became obvious that Asperger’s was responsible for a lot more than what makes me weird. It’s responsible for many of my strengths, too. Take it away and I’m no longer me.

That person I was mourning? She doesn’t exist.

Mourning the Loss

  • Don’t be afraid to acknowledge your anger, disappointment, sadness or other negative feelings.
  • Recognize your strengths along with your weaknesses.
  • You’ve always been autistic and always will be. However, that doesn’t mean you can’t work on learning social skills, developing coping mechanisms or changing your lifestyle/environment in ways that support you.

girl

Healing the Child (or Younger Self)

Growing up undiagnosed is hard. There is a lot of pain that comes from knowing that you’re different but not knowing why. Asperger’s gave me an explanation, but more importantly it gave me a starting point for healing that scared, confused kid inside me.

As I worked back through the more difficult aspects of my childhood, I felt like I was somehow mothering my younger self–revisiting each moment, looking at it in a new light and telling that younger version of me that it wasn’t my fault, that I’d done the best I could, that to expect more from me in the absence of support would have been unreasonable.

I wasn’t “obviously” autistic as a child–girls manifest ASD traits differently than boys in many cases and Asperger’s didn’t exist as a diagnosis in the 1970s.

I was, however, a handful. I was overly smart, easily bored, very curious and constantly in motion. Consequently, I got a lot of guidance from adults on how to behave properly. This reined in my more problematic behaviors, but it also made me feel like I was forever in danger of doing something “wrong,” especially when I “wasn’t trying hard enough.”

Being able to look back at my childhood and see that my behaviors were a result of my brain chemistry and not a result of “not being good enough” allowed me to begin to heal some of those lingering insecurities.

Learning more about Asperger’s helped me understand that I was bullied not because I was weird, but because I was socially inept. Reading about selective mutism gave me an explanation for my largely silent elementary school years–the ones where I never spoke in class unless forced to. Finding information about how ASDs manifest in girls shed light on why I had so much trouble maintaining friendships.

Each new bit of information absolved me of some perceived failure as a child and helped me begin healing some very old wounds.

Healing

  • Learning more about Asperger’s/autism in children can help you understand challenges you faced in childhood.
  • As an adult, you can choose to forgive the people in your life who hurt you as a child.
  • It may help to imagine your adult self sharing your new information with your child self as a way to offer comfort or explanations for unhealed childhood wounds.
  • If you find yourself having distressing reactions that are difficult to cope with, consult with a mental health professional or a trusted friend/mentor for help.

Coming next: Self-Diagnosis or Professional Diagnosis