This is Part 8 in the I Think I Might Be Autistic series
The morning of my appointment, I was incredibly nervous. My biggest fear was that I would go through this process and be told that I was officially not autistic–that I wouldn’t come across as “autistic enough” for a clinical diagnosis.
Fortunately, it turned out that I’d found a doctor who has worked with adults enough to know that we have many coping mechanisms and workarounds. He didn’t expect me to present the way a five-year-old boy would. He acknowledged that being an adult autistic doesn’t necessarily mean not attending your cousin’s baby shower; it can mean going to the baby shower and spending a good part of the afternoon hiding out in the kitchen (one of his examples).
The Diagnostic Interview
The first part of my evaluation was a diagnostic interview. I turned in my questionnaire to the receptionist and when Dr. H called me into his office, he’d obviously reviewed it. He started off by asking me to talk about why I suspected I have Asperger’s. I was nervous so I rambled around a lot. Looking back, I probably should have looked at my notes and used them as a guide, but my brain was going a hundred miles an hour.
Once my initial thoughts fizzled out, Dr. H. started working through the questionnaire, confirming symptoms I’d answered positively and asking clarifying questions. As I relaxed a little, the conversation became less structured. We talked a lot about my childhood, with the doctor encouraging me to give examples or tell stories to illustrate certain points. Gradually, he began inserting comments about Asperger’s, explaining how some of my symptoms were typical and how they fit into the diagnostic picture.
The interview lasted about an hour. By the end of it, I felt like we’d hit on all of the key points I wanted to talk about as well as some that I hadn’t considered important. Dr. H concluded the interview by explaining that he wanted to evaluate me for ASD, ADHD and Social Anxiety Disorder. The second one was a surprise but I was glad that he was forming his own hypotheses in addition to the one I’d presented.
He then explained a little about how cognitive testing works and about the qualifications of B, the ASD testing specialist who would administer the tests.
The Part Where I Provide Plenty of Autistic Behavior for Observation
When we moved to B’s office, I got a chance to demonstrate two of the symptoms I’d described in the interview: face blindness and delayed auditory processing. Dr. H introduced me to B and she cheerfully said, “Yes, we already met–you asked me where the restroom was when you came in.”
Completely thrown by the fact that I didn’t recognize her, I said “Really? Okay.”
As I was kicking myself for that useless reply, Dr. H asked, “Got plurdled gabbleblotchits on a lurgid zoo?”
I reflexively replied, as I always do when I have no idea what someone has said, “Sorry?”
“What would you like to be called?” he repeated.
I probably could have gone home at that point because not recognizing that I’d already met B, not being able to smooth over the awkwardness that followed, not greeting her with my name, not understanding what Dr. H was saying, being more focused on orienting myself in the room than connecting with the person I was going to work with–in less than 60 seconds, I’d exhibited a boatload classic autistic behavior, much of it as a result of struggling to switch activities/environments, which is in itself textbook.
To her credit, B quickly put me at ease. She spent about ten minutes “getting ready” while I sat, mostly silent, and studied the colorful barcode prints on her wall. Honestly, I wouldn’t be surprised if the time she’d spent puttering around with her supplies was more for my benefit than hers. By the time we started on the cognitive testing, I was feeling reasonably focused again.
Musings of an Aspie 
I smiled as I read this, because I know this. Only a little because of my own behavior, but mostly because of Ted’s. Before I began this comment I went upstairs to my office and pulled the file that contains all of Ted’s evaluations. I thought about the words Louisa used to describe their first meeting when she came to our house, the commencement of his “Diagnostic Interview” if you will. This was 11/16/1995, Ted was 4 and she wrote…
“Upon entering the house, the examiner was immediately struck by Teddy’s inflexibility in regards to the routines of his life. He refused to allow the examiner to cross the threshold of his door, informing her at least three times that ‘it was only for the people that live here.'”
Well, it pretty much went downhill from there! 🙂
It is interesting to hear how the evaluation plays out as an adult. Thanks so much for sharing!
It seems like the interview is superfluous in some ways. It’s the behavioral observation that gives us away. 🙂
I actually had an autistic adult tell me that the simple fact that I sat down and wrote a 10-page essay on “Why I think I have Aspgerger’s” was pretty much enough as far as she was concerned. I couldn’t sleep and I wanted to put my thoughts down on paper so that they would hopefully stop going around and around my head.
Yeah, I think that sums it up pretty well. 🙂 The more I learn about Asperger’s and autism, the more I find myself seeing autistic traits in others. I’ve seen others call this their A-dar.
lol thats me exactly. I narrowed my “brief summary of the facts” down to about 10 pages..with extra scribblings all over the edges and got so stressed trying to narrow it more that i gave them the lot. 🙂 My mental health worker laughed and siad i had done the job for them!
OMG! I giggled out loud. I had my initial interview today. Great to get in on a Saturday. I was nervous, my stomach began hurting, I was worried that I would not be who I know myself to be inside, all of the parts that I have hidden over the years, adjusted, tried to keep in check . . . and having said that, I spent all of yesterday (Friday 11.14.14) writing everything I could remember about my childhood (53 now), memories, habits, things my siblings did, what I know about relatives, plus health history and typed it all up and printed it to give to the doctor. Guess how many pages . . . 31. If a 10 page essay is pretty much enough, I must have written a master’s thesis. Thank you for making me laugh at a stressful morning. Actual testing is next in the next couple of weeks, sooner if I can get an appointment because of a cancellation.
Lovely. It cheers me to read your experience. I relate so well!
Thank you! 🙂
As an autistic adult you do not have to hide in the kitchen; other examples including standing up and speaking out – but hiding behind a well-practiced persona. When I meet someone know in a work situation – I deliberately do the following; look at them (at the forhead) and actually in my mind deliberately take a snap shot – I see the camera, look through the lens, and caption it with that person’s name. Does not work all the time; but imprved dramatically
Yes, hiding behind a persona is another commonly adopted option. I’m especially good at this in work situations too.
Gee, I noticed that when I am successful at speaking with other people, I go through a similar process. Because music has been a big part of my life growing up, I see socializing as a form of music. It’s also like hiding behind a persona, because essentially, I’m performing to an audience: the person I’m talking to. So I look at the person, take a deep breath, exhale, and let the words come out. Sometimes the notes are wrong and the rhythm off, but as with performing, you mess up and keep playing.
I had my intake today, and went in with a similar outlook: excited/anxious at the prospect of diagnosis, and concerned that I would not present as “autistic enough”. The questions were not very specific, which is what I expected..that sort of general overview of my family, work, and social life. I proceeded to run-on (as many Aspies seem want to do. I find that I’m typically speaking as fast as my mouth can keep up with my mind, or rather reserved, as I am either distracted or embarrassed by my thought processes.) There was some, though limited, discussion of my childhood, and the social struggles I had. My mind (hence my mouth) would wander, and I went off on tangents a few times, but made extra effort to stay on subject. At the end of the interview, the clinician basically said she did not observe any behaviors that she would identify as aspie, and that she believed my issues to be mood related. I have been previously diagnosed with MDD and generalized and social anxiety, which I believe to be correct. I have also been previously diagnosed with BPD. While I display some borderline traits (self harm in the form of cutting and suicide ideation by history, and a strong need for approval, which I still grapple with). Also a history of mostly short-lived relationships, wherein I was very emotionally dependent. That diagnosis does not seem to fit, as I do not split, and would not even know how to begin manipulating people. The mood disorder diagnoses do not explain away all of my behaviors, thought processes, social functioning, and executive function deficits. When I pointed out the differences between presentation of symptoms between male and female Aspies, she stated that there is no difference. What!? She also described me as “successful”. WHAT!? Like anyone who puts forth any effort at all, I have had some success in life, but rarely being able to hold down a job for >1yr and almost being able to make ends meet for my family of four with no opportunity for upward mobility without returning to school, which I can’t pay for does not fit my (nor my family’s) definition of “success”. I was left with the impression that she has no intention of further evaluating me for diagnosis on AS. I have spent 34 years wasting my potential on fear, confusion, and self-hatred. I understand that this is a process that takes time, and giving up is not an option. It’s clear to me that I will have to go to my next appointment armed with plenty of resources. Any advice on what to say, or the best resources for helping others understand this condition? After taking the AQ and researching the subject, I am at least 100% certain of my diagnosis. Is this static purgatory of menial work, more month than money, and extreme, unending exhaustion my only option?
I had the exact same problem you had, they tried to put the label “depressed” on me (and I was like, yeah that explains why I get fired so often *headdesk*). I don’t wish to do shameless self-promotion but on my blog there’s a letter I wrote for my diagnostician clearly stating all the things that made me think I might be autistic, based on the DSM-V. Yesterday they said that not only was my letter very clear and convincing, but the methodicalness was what made them decide, lol.
Oh, a link might be smart. Silly me.
Also, what you had to go through sounds horrible. It seems like these people really have no idea how emotional this is, how important it is to get some validation and acknowledgement. I really hope your next interview with them will be more positive for you. I know what it feels like to have to fight for a diagnosis every step of the way and my thoughts are with you. Good luck!
It sounds like the clinician would rather give you an alphabet soup of diagnoses than admit that you’re autistic. It also sounds like she’s biased and changing her mind could be a big challenge. Is this your only option for diagnosis? If so, I definitely recommend taking a look at Autisticook’s letter and coming up with something similar to take with you to the appointment. Tony Attwood also has some good writing on the differences between how males and females present. For example, there’s this: http://www.tonyattwood.com.au/index.php?Itemid=181&id=80:the-pattern-of-abilities-and-development-of-girls-with-aspergers-syndrome&option=com_content&view=article
This video also gives an overview of some differences of traits in males and females (it’s a teaser for a longer paid program, but it hits the highlights): http://www.youtube.com/watch?v=8Ea-C6Mr1Qc#t=115
These are both related more to girls than women, but at least they’re by “experts” which is probably what a clinician is going to demand (versus accounts by actually autistic people . . . sigh).
Honestly, if you have the option of somehow getting a second opinion, I think that would be best because the person you saw sounds biased and ill-informed. I’m sorry you’ve run into this. It sounds incredibly frustrating. But you’re right, don’t give up just because you’ve encountered one bad apple.
Thank you, ladies. I will certainly take your advice. Some of the things I read on this site sound like echos in my mind(as do conversations with my husband). Having a good state of mind bolsters my social confidence, and I’m really elated about my(self) diagnosis, so I was in a good mood for the interview. I’d hate to think I’d have to induce a panic attack for my appointment, & I’m not sure I could! Lol. I’m considering a second opinion. The good news is she gave me a deferred axis two diagnosis, so it’s not ruled out, so she may be open to it after I educate her(a psychologist…about psychology). This is part of my calling & my duty. Half of my thesis is going to write itself! Although, clearly, I obsess about the study of human behavior, it’s difficult for me to put thoughts to paper (as opposed to spoken word). But I’m literate. So I can and will do it! This ties into my exucutive deficit/motivational issues, which I’ve identified as my weakest area. I’ve not had good results from antidepressants in the past, but my Dr. put me on cymbalta, which seems to be helping somewhat. He said I might need abilify as well. I would welcome hearing about experiences with medicinal intervention, and whether it has helped. At first, I was resistant to this, but I’ll try almost anything! I don’t think it will be permanent. When I become able to propel myself through space sufficiently, and improve my financial situation, this will improve on its own. Circumstances have a great effect on mood, especially for us. BTW. Ausisticook, there should never be shame in self-promotion if it helps people. Plug on! If you don’t mind me sharing your site, I would be very gratefull to make reference to it. Cynthia, I’ve seen numerous storys (mostly on this site) of people who went into their interview armed with numerous references and an annotated memoir & hand the clinician a diagnosis, which convinced them it was a correct diagnosis, as you ladies did. I will try this approach at my next appointment. If that doesn’t convince her to eval further, it will be time to part ways and look elsewhere. Educating people about this is one of our many gifts to the world. I have a great support system, and am honored to add amazing women like you to that list. Thank you so much. I will keep you apprised. Sort of off topic: it’s not specifically AS related, but have you ladies seen Tom Shayac’ doc “I Am”? This man really gets it, humanity’s place in the universe, and how to fulfill our potential.
Go ahead and share my blog with whoever you think wants to read it! I hope it will help!
Thank you for sharing your blog and this great post! It’s like what I tried to share in my 31 pages with the doctor today, only your version is concise with links to resources. I will bring a version of this with me when I go for evaluation, including how this manifests in women just in case he needs it. I was abused as a child and I don’t want that to cloud the doctors judgement that what I am dealing with is simply the results of the abuse. I know the difference and I see me in so many places on the spectrum. Things that I have done, or do, the ways that I think, memory, stimming, much of which I just did not understand or make sense of, then I read someone describing ME, without even knowing me, and then I knew it was not just me, it was not me as off or odd, it’s neurological challenges me. I do feel good that this doctor has been working with adults on the spectrum for 15 years. He’s not a newbie to this.
Ah, so it sounds like the door is open a crack and you might be able to stick your foot in and make her see the light (eep, mixed metaphors!). I do think we have to be our own most aggressive advocates, especially in the diagnostic process. The diagnostic appointments are so short compared to the complexity of a diagnosis and all of the ways we’ve learned to mask our autistic traits over a lifetime.
I don’t have any experience with medication at all but I know that some other folks who are regular commenters here do. Perhaps they’ll jump in and share their stories. Also, I’m not familiar with that doc but I’ll look it up!
Well..unfortunately, I spent about 15 minutes with the above mentioned clinician. It became very clear that she knew nothing about AS or Asperger’s, and didn’t intend to find out. She stated, “you are not going to get a diagnosis for anything that will qualify you for disability”. I was very, perhaps too, honest about my motives for seeking diagnosis-typical: 1)peace if mind, as this diagnosis would make my whole life make sense, and allow for healing my family–very necessary with my parents and siblings. 2)To get on disability. This is not with the intention of mooching off the system. Truth is, I didn’t get a fair shake the first time around with my education. It wasn’t anyone’s fault. I behaved In irrational ways, especially under the high pressure of the clinical setting. The instuctors observed this behavior, and, somewhat understandably, did not wish to sully the college’s good name by graduating a nurse who has panic attacks on a med-surge floor. I did very well in my psych rotation, and have always had a keen interest in behavior. I understand there is something the SSA has called a medical/vocational allowance, which I hope to pursue to advance my education. I have contacted my employer’s Employee Assistance Program. Hopefully this will be a better resource as my employer serves adults with Developmental Disabilities. I’m down, but not out. Your kind words have helped me greatly. Please keep me in your thoughts.
Yeah, I was afraid that she already had her mind made up. I wonder if the result would have been different if you hadn’t mentioned qualifying for disability. *sigh* If you have a disability, it shouldn’t feel like a crime to get a diagnosis so you can qualify for services. Good luck with the Employee Assistance Program. I hope they can help you get on the right track and are more understanding.
I would find a psychologist with experience in diagnosis of ASD at all ages. They are sometimes hard to find but well worth the effort. You want to have confidence in the diagnosis regardless if the conclusion is ASD or not. Many psychologists are not taught to be really good diagnosticians beyond the basic diagnoses. Adult ASD is not a basic! There is an adult module of the Autism Diagnostic Observation Schedule-the gold standard instrument that should be a component of a thorough adult ASD assessment. A thorough adult evaluation should also include (whenever possible) a parent interview, spouse or partner interview, and a review of any available school records. ASD shows up across different contexts of a person’s life. An evaluation should look at all of those contexts. Good luck.
I thought someone may find information about the process in Germany interesting, so here is the first post about my diagnosis:
http://asperoomies.com/?p=59
Thank you for sharing the link here. You went through quite an experience!
So I’m reading Twirling Naked In The Streets (thank you for writing it – I’m a native New Yorker too – upstate, but not been home for a while) and again seeing myself, and remembering things I had forgotten. Thank you Jeannie! I have to ask this question because I keep seeing it referenced. Is it something with us as Aspies or those on the spectrum that so many of us seem to have this habit of talking about getting dropped off on this planet??? I can remember from my earliest childhood talking, to myself, or looking up at the sky, most especially the night sky, and either singing Twinkle Twinkle, or outright asking, why did you leave me here??? This is not what I remember. I don’t remember home like this. I’ve had more than one conversation over the years about being dropped off here without the instruction manual. Who does that! This place needs a manual. It is a funny commonality that I have seen-read as I find my “people” here on this blog, on other aspie blogs, and in quite a few of the aspie books I am reading.
+1 for the Vogon poetry reference