1 visit away from a possible diagnosis, but...

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Had my third visit today at the Psychologist’s office. Last time I did my 3-hr testing, and today was another hour. The Psychologist says it takes him a week and a half to analyze all the data and come up with a verdict.

My son had his first visit with him today as well and is scheduled for is 4hr test when I come back for my final report in a week and a half.

The doctor said he definitely sees lots of autistic behaviors both in my son and in me. But he said that doesn’t mean he will give me an ASD diagnosis since I have learned how to live with my quirks and can hold my job.

I don’t know how I feel about that just yet. ASD pretty much explains my entire life in a way I had never thought of before. Yes I have learned to adapt, but it doesn’t mean it is not a constant effort I have to put in on a daily basis.

Right now I’m thinking I’m embracing my “many significant ASD behaviors” as he stated, and just going with it even if he doesn’t give me an official diagnosis.

My goal is to be able to know how to help my 9-year old son. Knowing ASD for myself will probably help me have a different insight that can be beneficial in his life.

The waiting part is really a form of torture. Just because I need to see this testing process come to an end.

I need to focus on my son but also figure out myself under the light of ASD. Up to 3 or so weeks ago the thought of me having ASD had not even crossed my mind. I have some thinking to do.

My mom is in a bit of a shock, I think she thinks I would be bothered by the diagnosis or the fact that the doctor said I have many ASD behaviors. I tried to explain to her that his statement actually came as a relief. I don’t know if she understands that.

Thanks for letting me vent...

It's the waiting ... potentially knowing in your heart that it explains so much, and to hear, that you may NOT be diagnosed simply because you appear to be coping .... well!! OK, well, no matter what, you are "aware" that you may well be on the spectrum, and that it explains so much to you about your life up to this point. Hope your son copes alright with the process. I remember like it was yesterday how I felt when my son was going through that. Life was so hard back then. Hope you know we're behind you 100%...

Hugs. What does it all mean? What we make it mean. And it helps to have understanding to do that. So much confusion in our lives.

I would look into whether a diagnosis would be helpful to you at all...if it would allow you accommodations at work, additional therapy coverage under your insurance, etc, maybe emphasize to you doctor that your ability to mask your ASD behaviors doesn't indicate whether you qualify for a diagnosis or not.

But if you don't need/care about that stuff, you probably don't need the diagnosis. Those things are in your medical records, which (at least in the US) are pretty easy to get access to in the event there is a court case against you or something.

You guys are raising all great points. I appreciate your input.

I don’t know that I need a diagnosis necessarily. All the signs are extremely clear. I believe I am autistic. Part of me likes the idea of completion. An official diagnosis would be nice to meet that part of my personality that likes to cross all the T’s and dot all i’s. But I don’t think a “label” would change what I learned about myself over the course of the assessment process.

Unfinished processes are unsettling to me. I need to get to the end of this. Also, my process is nearing the end but my son’s is starting. I need to make sure that he will be ok and get all the support I never did.

By the grace of God I made it through without ever knowing why I was different. I got married, graduated, have a great job. All those things are still unknown for my son. I gotta make sure he has the needed support and stays in a good path mentally, physically, spiritually and socially.

Thank you for listening. Being able to say these things to you guys is helping me a lot.

That's weird to me that a psychologist would apparently say something to the effect of: "You may very well be autistic, but since you've developed coping strategies and can hold down a job you're living life as if you're not so I might not diagnose you as autistic."

That's like saying: "You likely have a muscular or nerve disease that makes it very difficult to walk but you've learned how to walk in spite of your pain so I probably won't diagnose you with the disease (even if you really have it)...."

There are two categories with three criteria in the first and four criteria in the second from what I recall for an ASD diagnosis. A person may meet certain criteria but not enough to qualify for a diagnosis. They may be "borderline". Perhaps that's what he means?

I've just recently gone through diagnosing my child. I'm still recovering. I may be able to write something more useful once recovered.

I agree with Magna. Your doc probably underestimates the pressure you have to put on yourself to function so "normally". He might not be really aware of how ASD impacts the "high functioning" - with exhaustion, anxiety and constant strain on mental health.

On the other hand, I didn't pursue full diagnosis for myself. It's an expensive, stressful process and there is nothing to gain for me. No services for AS/HFA adults. All I needed was the key to understanding myself that finally fitted - and psych help that did not require the diagnosis. My psychologist was the one who spotted it, so she's obviously ASD-aware. My psychiatrist shrugged the idea off but his approach is individual enough to take all my ASD-related quirks and struggles into account.

I hope your son gets sufficient help. And please, do care for yourself, for the sake of your son. You can't give from an empty cup.

Magna and Magz, thank you for your comments. My awareness of ASD has definitely gotten me more concerned about my mental health. I have to be more protective of it moving forward, especially to strengthen my ability to help my son (whether his diagnosis turns out to be ASD, or anxiety, or ADHD, or whatever other D).

Maybe what the doctor meant was that he needs to check if I fit the DSM5 criteria. He saw many of the ASD traits but he needs to look at my tests, to see if what he sees meets all the criteria for diagnosis. I was looking at the DSM5 just now, and item D seems very vague. It says: “Symptoms cause significant impairment in functioning”. This is really a subjective interpretation of how I’m able to adapt. I’m not sure it takes into account the mental strain. It could be looking just at how well the social outcomes look like on the surface.

Isn’t it ironic that someone else gets to decide how our adapting/masking to the NT world affects our functioning?

I've been wondering about this same thing. I am extroverted and want to live BIG so I need lots of support - and I go get it (multiple therapists, friends, lean heavily on my NT spouse). My Aspie-like BFF on the other hand is highly introverted, doesn't want support, so has adjusted her life accordingly: she does very little, has very little stress and has less support (some but fewer therapists, friends, no spouse). So like @magna implied, because one is managing does not mean the underlying factors are gone. One is in "remission" if you will, or otherwise "medicated".

I am facing a big life change so have recently upped my resources: scheduled a buddy at work, got a lawyer, and joined a ASD support group (prematurely perhaps), and I have a *third* counselor on call, considering medication. So, yes, I can obtain my own resources. And it's manageable (that's subjective) as long as the support matches the stress, or someone steps in to hold the piñata rope when I am overwhelmed, yell something inarticulate, throw my hands up in the air and bolt from the room.

As aside, I am rehearsing my first assessment appointment: Would you like me to behave and act neurotypical? Because I can do that. Or can I be myself... I'd prefer the latter..."

FYI - Interestingly my RDOS *NT* score is higher than most (90-100), so I am "higher functioning" that way.

SharonB, I understand!

It is so hard as an adult who has learned to manage things at work and be fairly ok among NTs to get an accurate check on part 1 of the DSM5. The deficits exist but are hidden, especially in women.

So many of us fall through the cracks of the diagnosis criteria. Official or no official diagnosis, my struggles are real. I’m the one at the end of the day having to deal with it all.

I’m just now for the first time in my life have been able to verbalize some of the feelings and struggles I’ve had. Not even my husband knew. Not because I didn’t want to tell him, but because I don’t have the vocabulary to explain the emotions and things in my head.

Reading about ASD and the descriptions of people in the spectrum gave me the words to explain to him a lot of things and has opened up a door to areas of my personality that no one had access to before.

It’s a journey. It will take some time to reflect and analyze all of this. But I’ll walk that path at my own pace and I will figure this out.

E X A C T L Y.

Why is he assessing you for ASD and presumably charging you or your insurance for these appointments, if your job will invalidate the findings? If he doesn't believe that autistic people can hold a job, the first and only question on his assessment forms should be "Do you work, or have you worked?" If yes, he shouldn't be taking your money for an assessment. I would report this to the regulatory body of where he is employed.

I'm sorry this happened. I would complain loudly and often. Don't accept his rhetoric or let him convince you that a diagnosis doesn't matter. You wanted an objective diagnosis and that's what you paid him for. Make sure you get a clinical report from him which shows all of your quantitative test scores. If you really seem to be on the spectrum but he denies you because of your work history or coping skills, that needs to be reported. I held a career and seemed successful on the outside until I imploded, had a nervous breakdown and suffered a stroke. I didn't know I was autistic and had no access to any support services. Don't let this happen to you if you are indeed autistic, and struggling.

Isabella, it seems strange, right? But I think he is trying to make sure he can check all the criteria for the DSM5. Item D in the DSM5 states: “Symptoms cause significant impairment in functioning”.

The catch here is that he is going to determine in his assessment if all the symptoms I have cause significant impairment in my life. It seems there could be a huge gray area there when someone is trying to determine what is “significant”.

He gave me 3 questionnaires to fill out at home, a 3hr test at the clinic, and a 1hr test he administered himself.

On the 3 questionnaires, I scored very comfortably within the ASD numbers.
The first one I scored 134 (cut off for ASD diagnosis is >=65), another was 20 (cut off >=14), and the last one I scored in the Moderate Impairment range. I have no idea how I did on the 3hr test, but I’m pretty sure I sucked at the memory portion. I also believe he was testing me for dyslexia.

I guess the key will be in what he considers significant...

I does seem VERY strange to me. The questions on your assessments all measure coping skills (e.g., questions about whether you burn out in social situations, have difficulty with nonverbal understanding, whether you have repetitive behaviours or stims or difficulty with expressive empathy). For you to get the scores you got, you obviously have an impairment of some level. Did you do a developmental history? Did you do the faceblindness test? The reading eyes test?

It's hard for me to compare your assessment procedure because mine was very different. I was e-mailed about 17 pages of questions pertaining to my childhood development, before I even met the doctor. I responded with 188 pages of information which I bound into a book with an index. Yes, overkill. I doubt she even read it all (Lol), but my point is that a person's developmental history is a big part of the assessment alongside any questionnaires you might be given. I didn't do any questionnaires or tests on my own at home. Everything except for my Developmental History was completed during my appointment, in a verbal format. I met the doctor all on one day for more than ten hours and did all of the assessments with her. Some were double blind and I had to answer on a computer. They were sent to a third party somewhere; I think in America.

I know that not everyone has the same testing experience, but my point is that ALL of the tests you did are measuring how well you cope. I don't know how you got scores above the cutoff if you don't have an impairment. It seems counterintuitive to me.

Maybe he doesn't see you as having comorbid conditions such as depression / anxiety, but a person isn't required to have comorbid issues.

I'm curious to see what he says in his final report. If you really think that the scores indicate ASD, you have a right to complain or ask for more testing.

Isabella, that was great info! I especially like the index bit! Perfection!! !

I wrote a 15-page about my significant events, family/friends/interests, etc. Didn’t think of including an index, but everything had bold titles, sections, page numbers...

I walked on my toes when I was a kid, I do have face blindness. I don’t think he tested for it tho. When I started dating my husband it was quite funny.... Anyway. I have stimmed ever since I was a baby, just to mention a few...

I think I may have a touch of OCD and dyslexia. To be honest, unless I am bursting at the seems I don’t think I can tell the difference between me being prepared in advance and me being anxious.... I told him that.

I think he is also screening me for depression and ADHD. I don’t think I have depression, but could possibly have ADD (ain’t got the energy for the H. )

Or like a car mechanic who says "Your car has four flat tyres. Is a miracle it runs. But as you are used to driving like that I don't need to fix them for you"....