I have Aspergers – Part 2: Getting the diagnosis

For more on this series, go back and read part 1: who I am.

It has been quite some time since my wife first suggested to me that a lot of how I am reminds her a lot of how my son with autism is. It was one of those things that I would dwell on for a while and would come up between the two of us from time to time.

After a while, I decided that wondering was serving very little purpose. It answered some questions but raised a much bigger question and it did very little good in how I would talk to others about autism because I had this big piece of information to share but couldn’t… simply because I wasn’t sure.

So I finally decided to put my questions to rest and talk to my doctor.

Doctor HibbertMonth 1

A very unpleasant visit with my doctor marked the beginning of the process. Don’t get me wrong, she was very pleasant. It was the part where I had to find the words to answer “So what brings you here today?” that made the situation unpleasant.

No matter how many times to run it through your head ahead of time, when you’re sitting there and someone actually asks you… you go “uhhmm…. well… uhhh…”

So I find my way through suggesting that I need an assessment for myself and then need to explain why.

Let me explain. People who don’t read this blog, even my doctor, don’t know that I know anything about autism. I could just see her, in her mind, thinking “oh great, another one who thinks that just because he has google, he can diagnosis himself with anything that it tells him too.”

But it would seem that she did not think that, she understood the reasons and said she would put in the request.

Month 2

I get called into the local hospital, which is where the psychiatrists, psychologists and others of those fields all are.

I get to sit with a young lady who informs me that she has a questionnaire to run me through before they can determine if I qualify for an assessment.

I laugh and say “so this is an assessment to see if I need an assessment?”

Yup.

About an hour into it, still not done, she’s already suggesting that there are some great councilors at the hospital that I could do sessions with or group therapies. There are even marriage councilors that she could recommend… just in case our marriage needs it.

So we continue on and finish somewhere near the 1.5 hour mark.

She basically asked me a lot about my state of mind… if I’ve ever considered suicide, if I would describe myself as being happy, if I get excited about stuff… and on and on and on.

It was clear that I needed an assessment.

Month 4

A doctor comes in from out of town (because there are none here) and gives me some tests.

Over 3 hours of tests!

I did an IQ test, EQ test, AQ test and an SQ test. There was even some other tests that I didn’t recognize.

On top of all of that was the regular observational stuff. He noted that I was able to make eye contact, was quite fidgety and some other things like that.

One thing that I noticed though, that I thought I should mention… some of the tests actually offended me a bit.

I found that, in some tests, alcohol and drug abuse accounted for at least one third of the questions.

Questions such as “has your alcohol abuse affected your relationship with your family?” and the answers would be “rarely, sometimes, occasionally, often, all the time” or choices to that effect.

Where was the option for never? Or… I don’t drink?

Questions such as “has your drug use ever interfered with your job?” seem very one sided when there is no option to say no… only that it has to be to some various degree.

And they were repetitive… as though they were trying to see if you’d answer the same question differently later in the test if it was worded just differently enough for you to not recognize it.

The thing is… when you are answering 300-400 questions and 1/3 of them are about alcohol or drugs… you start to feel like you’ve been judged before the fact.

Is this really how they think it is for autistics? That they’re all alcoholic drug abusers?

Most of the time, I would just scratch it out and actually write “I don’t drink” or “I’ve never done drugs” and just let them figure it out or I would just not answer.

A part of me sat there wondering… if I’ve never been a drunk or a stoner… will I still qualify for an autism diagnosis? Is that how it works with them?

Still though, I just tried to brush it off and say “they know what they’re doing” and did my best to get through.

After 3 hours, I was exhausted.

The doctor told me he’d be back in town in 2 months.

Month 6

Doctor didn’t show up.

He did say he’d call me in month 7 if he wasn’t able to come back in month 6.

Month 7

No call.

Month 8

I call the hospital and they tell me to call my doctor’s office.

My doctor’s office is all shut down for the holidays.

Month 9

My doctor’s office tells me that they have nothing, know nothing and I have to talk to the hospital or the doctor that did the diagnosis.

The hospital tells me that the results should be at the doctor’s office.

Month 10

I sign a paper at the doctor’s office giving them the legal capacity to track down this doctor and get my results.

Month 11

My doctor’s office gets the results and tells me that they will not give me the results until we can meet face to face…. in month 12!

One full year.

However, I ask to be put on the cancellation list and by some miracle, I’m called in… in month 11.

I talk to my doctor and then talk to a councilor that same day and I am told that it is official.

I am diagnosed with Aspergers and Mood Disorder too.

A long year

It’s been a long year… a long several years if you take into account the time that I’ve suspected it before hand.

But worth it. Because now I know.

The process is obviously not the same for everyone, I would imagine most people don’t lose their doctor somewhere along the way.

But still, I am glad that I waited until after I got my diagnosis to tell anyone… and this is why.

After going through over an hour of questions just to be assessed for an assessment, then another 3+ hours of doing test upon test upon test plus observation plus what ever paperwork he had to do once back at his own office… I feel very justified in not assuming that I could diagnose myself.

I mean, it turned out that my suspicions were right. But still. I am not qualified. That much is so obvious to me now.

If the experts, who attend years and years of school, have read libraries worth of books and go through assessments just like that one on a regular basis are still able to make a misdiagnosis from time to time…. then who am I to think that I could ever get it right just by going on a feeling?

When my son was diagnosed at 2, the doctor made the diagnosis much in the same way I did… I watched his behavior. I could tell that his milestones were delayed and so could the doctor.

But it’s not like that for adults. It’s not that simple.

If you suspect that you have autism, I will take your word for it. Still, I suggest finding out for sure.

No, it won’t change your life and they won’t throw you into services that you don’t need, since there really are none… but believe me when I say that I am very very glad that I didn’t tell anyone until I was sure.

I wasn’t confident of the decision to stay quiet before but after having gone through it all, I am now.

I now have a real answer. And even though I’m still me and nothing much in my life has changed, it is a huge question answered and as strange as it sounds… it’s a big weight off my shoulders.

Tomorrow:

Part 3: Life after an autism diagnosis

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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7 Responses to I have Aspergers – Part 2: Getting the diagnosis

  1. Bill Boutin April 24, 2012 at 9:18 am #

    Hi Stuart;

    I can relate to your story about being diagnosed, sorry it took you a long time. Took a long time for me to, since I was originally diagnosed with a “personality disorder” amost 50 years ago, they didn’t understand much about Autism back then. I have three children that are also on the Spectrum to varying degrees. I was in radio, built my first crystal set at age ten, then moved on to making a tic tac toe playing “computer” at age twelve. I worked as an ET for a while but never got into web design, I can barely make my Facebook page work properly. Since I didn’t qualify for the “DD” programs here, fortunately my kids did though, so I don’t really have any support where I live, I mostly just keep to myself these days and try to connect with people online. I did a lot of advocacy work for mental health as a performing artist, but that pretty much has gone by the wayside here too. Sorry for the long rant, just trying to get to know people in similar situations online and tell my story. Thanks for your time and your good work.

  2. Navi April 24, 2012 at 10:35 am #

    The alcohol questions are part of every mental health assessment. I know I did a research study and there were similar questions, but usually there was a question at the top you could say you don’t drink or don’t do drugs and skip all the questions about drinking and drugs. The problem is actual alcoholics try to play it down so they have questions like “even if it was just a sip,” to account for that. I’ll guess is they probably did both the autism questions (which don’t have substance abuse questions) and a general assessment (which is where they got the mood disorder dx from – most autistics have some sort of comorbid disorder/dual diagnosis – http://www.aadl.org/video/view/86 that’s a video from 2008 that focuses primarily on autism and depression in children & adolescents but other comorbid disorders are discussed in the beginning)

  3. navi April 24, 2012 at 10:39 am #

    (the research study was a family study – and my ex had me help him fill out his portion – it was kind of funny because he was an alcoholic and had a history of substance abuse so I always felt boring when I answered the questions) – for my own mental health assessments, there weren’t very many questions regarding substance abuse, but that’s probably because the physician elected to use a shorter form – there are usually multiple versions of various assessments.

  4. Rachel April 24, 2012 at 6:02 pm #

    I self-diagnosed, but wanted “official” validation. I don’t know that I’d feel the same way now, but that was then, and that’s how I felt. When I thanked the specialist for his work, he said, “Don’t thank me. You figured it out yourself with your own insight. I just gave you the diagnosis.”

    So I feel strongly that a lot of us are capable of self-diagnosing, precisely because we’re adults. We have adapted in so many ways that it’s difficult for professionals to make an accurate diagnosis, and we’re capable of the self-reflection necessary to see whether the criteria fit. Women are hugely underdiagnosed because we don’t “appear” to fit the criteria, so the professionals are often wrong, and their being wrong leaves a lot of women either undiagnosed altogether or diagnosed with the wrong condition. I have a friend who was told by a specialist that she could not have Asperger’s because she had *called him on the phone* to ask for an assessment. Another was told she could not have Asperger’s because she has children.

    So the professionals, despite their book learning, are not always right. The ones who do the best job are the ones who listen to our insights about ourselves and can see past the adaptations.

  5. Alicia Hendley April 29, 2012 at 9:14 am #

    As a clinical psychologist (and mom of a little boy with Autism), I’m SHOCKED by the amount of time you had to wait for feedback and diagnosis. Was this a physician or a psychologist? I know that for psychologists (in Ontario, at least), there are laws against such a wait and complaints can be lodged (something I would have done in your shoes!). Two months? Acceptable. A year? Never. Just some thoughts.

Trackbacks/Pingbacks

  1. I have Aspergers – Part 1: Who I am | Autism from a Father's Point of View - April 24, 2012

    […] Part 2 – Getting the Diagnosis. […]

  2. I have Aspergers – Part 3: Life after an autism diagnosis | Autism from a Father's Point of View - April 25, 2012

    […] For more on this series, go back and read part 1: who I am and part 2: getting the diagnosis. […]

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